I am used to Jude being looked at in a funny way. Children are one thing, they don’t know any better. But adults DO. Jude looks like any other child, actually more handsome than most :) but he behaves oddly. For example, he might sit there banging two toys together – he sometimes makes strange noises or he might have a massive meltdown – at the shops for instance. Sometimes I feel 300 pairs of eyes on us – all watching us, all judging us for being disruptive and difficult. I have struggled for years to accept my reality. I have been sad, angry and in denial. I have prayed everyday for certain challenges and losses in my life not to be ‘my real’.
Then one day, I woke up and realised that I need to stop fighting the truth and rather embrace it. I realised that although my journey is a lonely one and no one really understands what I go through on a daily basis – we all have our struggles and we all feel helpless at some point in our lives. What if this has all happened in order for me to try and give just a small amount of hope and light to all the other people out there? To give a little bit of strength and courage to a person who really needs it, and to plant seeds of empathy that may one day blossom into a more inclusive, kinder world for Jude. And so I decided to share my journey…
Thisbookisdedicatedto
YOU the reader. No matter what happens and what you are going through, it will be OK! Have your cry, punch the wall, scream into that pillow then dry your eyes and move along because SH!T needs to get done. And no one else is going to do it for you!
To my love, Wayne Marc Miller (WMM) for accepting me through all my madness, tears and pain and loving me unconditionally. I still can’t believe you wrote a chapter for this book!!!
Jude, wow is all I can say. Who would have thought my child would be my biggest teacher in life? Grateful.
Taye Reece you rock our world. Thank you. We hear you, we see you and we love you.
D, Jude’s second mommy, sometimes his first. Without you I wouldn’t cope. Thank you will never be enough!
Nix, for pushing me to do this. Your help and guidance will always be remembered.
My Jo, thank you for being such a warm generous soul in my life. “Hey Jude” wouldn’t have happened without your guidance, your patience and your A-type personality. Thanks for bringing out my raw and real …I’m forever grateful.
To my family, Dad, Ta and Boy, where would I be without the three of you? Dad, there is no one kinder and braver than you. There is nothing you wouldn’t do for your loved ones. We are beyond blessed! Ta and Darryl, no matter how far away you are, I feel the love and warmth and I cherish every moment we get to connect across the miles.
Mom, my guiding light, my butterfly I know you are always with me.
To my Mom in law ESK thank you for giving me the best gift ever - WMM and for loving the boys the way you do. You are an amazing “ganny” and nothing is ever to much for them and us. We appreciate you so much.
Paula, you became so much more than just the editor of my book. You got me, cried for me and with me, understood what I wanted to get across, and you saw so much in “Hey Jude” and just believed.
I am forever grateful. Thank you will never be enough.
To all my people, my village. Thank you for listening and your unconditional love.
To anyone fighting an invisible battle….. I SEE you.
Introduction
I often used to think that it would be encouraging for others if I could let the world know about Jude. Then Covid hit the world like a tidal wave and we were literally locked up in our houses, our kids were online and much time was spent on social media. I saw many posts on how many people were struggling – especially those with special needs children. I had an epiphany that I should write a book about the ins and outs of our life since having our Judey boy.
If anything, perhaps it could allow others to know that they are not alone - and for those who don’t ‘get it’, perhaps they could find it in themselves to be more empathetic. So I made the decision to put my thoughts onto paper and to share our story. It hasn’t been easy and it’s taken me a while, but I finally did it. This book will give you some sort of an insight into our hectic but beautiful life and it will allow you into the world of my 10 year old son Jude Ashton. The most energetic, sweet, happy and beautiful soul.
When you look into the face of a child, you are looking into the face of tomorrow. That means that the challenge, the responsibility, and the honour of our children’s tomorrows are upon us today. So whether you are the parent of a child with disabilities, you work with special needs children or you believe that every child has the right to live their best life, I hope you will join me in creating a kinder, more understanding, more inclusive world for all children.
Let me introduce myself. My name is Jacqui Miller. Born in Johannesburg – South Africa. I love telling people the story of how I got my name. My mom and dad were on the way to the hospital when they stopped at a robot. A bunch of beautiful jacaranda flowers fell onto the car and the decision was made to name me Jacqui! Otherwise known as Jax, Jaxy, Jaxson. My dad says he never told me this story! I’m convinced he did or that it was a dream that I haven’t forgotten.
I wear many hats - wife to the best man on earth, mommy of two magnificent boys, daughter, daughter in law, sister, granddaughter, niece, friend and teacher (in no particular order). I grew up in a happy home with my mom Serena, dad Jules, an older sister Taryn and a younger brother Darryl. I would say we had a generally normal upbringing. My mom and dad both worked, we got a great education and we never went without. Life was good and we had nothing to prove to anyone. I always had friends and enjoyed school. I was always more of a social butterfly as opposed to a bookworm.
My favourite game to play growing up was ‘mommy mommy’ and I knew I always wanted to have my own kids and couldn’t wait for that day. I really loved my teachers from nursery school upwards and this is what also inspired me to become a teacher myself. I’m generally a people pleaser and literally worry about something before it has happened, so yes, I kind of live on eggshells. I am a worrier by nature, I need to know that everyone is safe and okay. I revolve my life around doing things for other people. Perhaps it’s a distraction from my own life – I’m still trying to figure that one out.
I met Wayne when I was 20 years old - in 2004 at a bar my friends and I used to visit frequently. We dated for 4 years and then got engaged in 2008. Wayne and I have been together for about 19 years. Married for 14 years this coming June. I had “known” Wayne from when I started high school. He was in Matric – it was the year 1996. We didnt take notice of each other back then. To this day he says that he remembers me with mousy brown hair and braces, saying “hi” to him. Funny, I don’t recall him at all. Must have been in his dreams.
Fast forward a few years and I was out of school. It was around 2004. I used to hang out at a place in Norwood (the good old days) and I was a regular. I was there at least a few times a week. It was here that I became friendly with Wayne and his mates. One of his friends had asked me out, which I kept putting off. He just didn’t seem quite right for me. Wayne had apparently taken my
number from this mate. Then one afternoon, I got a message on my phone saying “Jax, what time should I fetch you this evening?” I was like - that’s weird who is this? I didn’t have this number in my phone. So I said “sorry to be rude but I think you might have the wrong Jacqui, who is this?” “Oops, I am so sorry I was meant to message my friend Jackie. I’m taking her to a movie tonight, so sorry.”
(Yeh right)
We landed up going for dinner that week and as they say… the rest is history. We got engaged in Plett 2008 at the Beacon Isle hotel. It was a really special proposal and a memory that I will always keep very close to my heart. It was the beginning of …. well…everything.
I wish I remembered my mom more clearly. The most special lady. A heart of gold and the kindest nature. My mom was calm and collected. She taught us to never sweat the small stuff in life and never go to bed fighting with your loved ones. Mom taught us to always think of others and to be grateful for what we have. There is always someone less fortunate in this world. My mom loved family time and nothing was more important to her than family. She was patient and always believed in us and encouraged us to pursue our hopes and dreams.
She was forgiving, calm, organised, friendly and warm.
We have a very small family. The reason being is that my mom and her sister Mandy married two brothers Jules and Russell – So you can imagine how close a family we were.
I got engaged on the 20th of December 2008. The excitement was real and we could not wait to plan my wedding. Prior to my big day, my mom would be making a salad for supper and then we would sit down to eat and as we were about to start, there was no salad. It was left half made in the kitchen. “Oops sorry!” She would say she got distracted and we would laugh it off, get the salad and carry on with dinner. I would get a call from her weekly nail appointment lady to say, “Is mom coming today? She is not answering my call and she hasn’t pitched up for her nails?”
My mom had an autoimmune disease called Yuppie Flu, another name for it was chronic fatigue syndrome. It started around 1987. My mom was always tired, she always needed to have a rest in the afternoon, she had aching muscles and suffered with migraines like I do. I remember her always saying to me “when you have kids, your migraines will stop”. She was right. They did while I was pregnant but came back straight after each of my boys were born. Those two pregnancies were bliss! So we put it down to her Yuppie Flu and assumed she was just exhausted.
2009, the build up to my wedding which was taking place in June was so very exciting. You can only imagine the hype. Like every bride, I couldn’t wait for my big day. Everything was basically organised and set up, I just needed to find the perfect dress. But the whole experience leading up to it all was just odd. My mom was so not “present”. Just not that keen to get involved, not so keen to come dress shopping with me. This was SO not like her. She was never a shopper but when it came to being an involved mom she was always around and always happy to help and be a part of whatever was going on. I had asked her to come along to see a dress with me. She said she was tired and wanted to stay home and rest, so I got on with it and took my sister. I picked the perfect dress. I had organised my wedding with the help of my sister and my mother in law and it was the very best day of my life!
My mom really was not herself and the next few months were a worry for us all. My sister’s wedding was 6 months after ours so we were all very busy, focused and excited for that and had something to look forward to. Two weeks before my sister’s wedding my Zaida (grandfather) Mike (my mom’s dad) passed away. It was a really tough one. I was extremely close to him. I will always treasure the fact that he was able to be at my wedding – dancing away with his brandy and coke and having the time of his life.
After the wedding celebrations we had time to really focus on our mom. My dad took her to see some doctors and they actually thought she had a very bad case of depression. My dad was convinced it was something more but the psychiatrist at the time thought differently. My mom used to cry a lot during this time. She was not a crier at all! She was always tired and just forgetful and a lot of the signs pointed in the direction of a depressed person. She was put onto medication, but nothing seemed to help and she seemed to only deteriorate. She seemed completely removed and had become even more forgetful. She was no longer the Serena that we all knew and loved. It was such a scary feeling. To look at her everyday and not be able to help was the worst feeling in the world.
As the months passed, our concern increased and my dad being the protector that he is, knew in his gut that mom was not right and her brain was not functioning as it should have been. He got a close family friend of ours who is a doctor to help us get an urgent appointment with a geriatric specialist. The appointment was set for the 29th of June 2010.
In the evening of June the 28th 2010 our other special Zaida Alec passed away peacefully. We were all around his bed in the hospital when it happened. It was heartbreaking and also was 6 months after our other Zaida so it was still raw. Both sets of grandparents had been married for over 50 years! My grandmothers are both still alive today, one is 94 and the other is 88.
The appointment for my mom arrived but my dad couldn’t go as he had just lost his father the night before. It was imperative that my mom still go – as we had been waiting to get her in. I stayed home and got the house ready as everyone would be coming to sit shiva. (In Judaism, after loss, family members gather at one location to mourn and be together for 7 days and people come through to pay their respects to the immediate family members.) My poor sister had to take my mom to that appointment at the geriatric specialist alone. I remember opening the back door of my parent’s kitchen and unlocking the gate when they got home from the appointment and seeing my sister’s face and swollen eyes, I knew….
Early Onset Alzheimer’s Disease – Memory loss, difficulty planning and solving problems, difficulty completing familiar tasks, difficulty determining time or place, difficulty finding the right words, vision loss, misplacing items often, difficulty making decisions, withdrawing from work and social events, experiencing personality and mood changes lots of confusion, depression, anxiety and fearfulness.
It literally takes everything away from you. My mom was 47 years old when she was diagnosed. She still had her whole life ahead of her. This revolting, terrible disease stole everything from her and from us. My parents had a beautiful happy marriage, they were together for 32 years! We saw an instant shift with my dad – I mean who can blame him? My mom did everything for him, he was super spoilt in a great way. My mom’s life revolved around my dad, she absolutely adored him.
My mom’s focal point and biggest ‘interest’ was her family and keeping everyone happy.
Now everything changed. From my dad not being ‘able’ to make a piece of toast, he became a gourmet chef – with the help of Mary, our amazing goggo. (Our nanny) My dad now had the responsibility of making sure my mom was looked after properly –bathing, feeding, medication, resting and even applying her makeup.
Between my dad, Taryn and I, we ensured that my mom was immaculate (as she had always been), ensuring she continued to have her hair and nails done weekly. Taryn and I enjoyed giving mom a makeover. She used to have to dress in a certain way for work, which we hadn’t been too fond of. My mom was the function coordinator for a charity organisation. She worked there for 15 years. She was the most efficient, hard working and organised person. She could arrange an event and seat over 5000 people in the blink of an eye. It wasn’t as if she was dealing with an easy crowd, and yet she always came out with a 100% success rate. The end of her career was rather disappointing. She had given her all to this establishment and when she was no longer able to give as she did, she had to go. I remember it clearly, we had to call her bosses up and say “don’t you think it would be nice to show her some respect and give her a farewell party and thank her for her amazing 15 years of dedication?” So against my will I went with her to this “arranged farewell”. A very sad ending indeed.....
On the 29th of June 2010 my mom was diagnosed with Early Onset Alzheimer’s Disease and OMG is all I have to say. Our lives had been completely shattered and torn apart.
The hardest part of this diagnosis was that my mom knew that she was losing her mind at the beginning. She knew that she wasn’t ok and that she wasn’t going to be ok. Imagine knowing that you can’t get better that something is eating away at your brain and nothing and no-one can stop it? How scary, how heart-breaking is that!
The years passed and my mom was deteriorating. She was really getting worse by the day. Our Gogo Mary and my dad were amazing with her thank goodness and also had a night nurse to help out later on as she didn’t sleep much. I spent every afternoon with my mom and she spent every morning with a very special close friend of hers who would drive her around, take her to shiurim (talks on Jewish wisdom), shopping, just keep her company and who never ever gave up on her even though she was never the same person and wasn’t always easy to be around.
It’s funny how people are always around for the good times, but when bad times come, there are very few who stick around. We will always be eternally grateful to the ones who stood by our side and who never gave up on our mom.
I found out I was pregnant in 2012, I could not wait to tell my mom. This is what she had been waiting for! At fi rst, when mom heard the news, she gave me the biggest hug, clapped her hands. She was over the moon and wished me mazeltov. However, she soon forgot about this…
When I had my beautiful Jude in January 2013 my mom’s wishes and dreams came true. All she ever wanted was grandchildren, from the day I met Wayne and she knew I loved him she said, “Come on already! I need grandkids”. My children really lost out on knowing the most amazing Bobba (grandmother) and person they would ever have met. Kind, gentle, a really beautiful person who was always positive, always surrounded by good friends and just a mensch, never a bad word said, always saw the good in others.
When Jude was born my mom was already 3 years into her disease and her mind was not great, I didn’t feel comfortable to leave her alone with Jude, she wasn’t driving, she couldn’t help me with him (such a heart wrencher as I know she would’ve been completely hands on). But she spent every afternoon with us and loved her little bubbi so much. He used to say “bobba” when she arrived and her smile would light up the room. She was obsessed with him. My mom actually felt really comfortable around Jude. He became her little ‘friend’ and didn’t ‘judge’ her. He never asked her questions like others did and she was never put in an uncomfortable situation when she was with him. He made her happy! Every afternoon I remember playing with Jude and my mom in the playroom and my mom was having so much fun. One day she started crying and said to me “Wow you are so lucky you have your own family. One day I hopefully will be able to have kids of my own and a family just like yours.” That day was the de fi nition of the ugly truth. I knew for certain that my mom was ‘gone’.
My mom and I were very close, she trusted me and knew me. I don’t think she always knew that I was her daughter but she knew I was someone important to her and she loved having me around her. I tried to spend most of my time with her but then as Jude got older and he got “sick” it just all became too much for me. I didn’t spend the time that I used to with her, but I made sure that I still visited her everyday – even if it was even for a few minutes. I needed to see her everyday.
years after he passed on. I have heard lots of stories about him. Ashley was always surrounded by people and loved to live life to its fullest. He would be so proud of his unbelievable son today!!!
On the 21st of January, I couldn’t stop cleaning the house. I needed to be as busy as possible. I made Wayne a delicious dinner – as a 37 week pregnant Jewish wife would do. We then got into bed to watch some of my favourite shows. I then of course started to moan about all of my aches and pains – again, as a Jewish 37 week pregnant wife would do. The clock strikes 12 am - the 22nd of January – My waters broke at 37 weeks.
I suddenly awaken feeling like someone has just thrown buckets of water all over me! I screamed for Wayne and then realised it was my water that had broken. No one warned me about this! Of course Wayne had to shower and get dressed up for the occasion while I stood there as my water flowed out of me. In the interim, he needed to gather towels for the car trip – so that I didn’t mess his car as any Jewish boy would do. My little Jude was getting me ready for what lay ahead… We make plans and G-d laughs.
On the 22nd of January 2 am 2013 (which happens to be my sister Taryn’s Birthday) the most perfect prince arrived weighing 2.6kg, wrinkled and with strawberry blonde hair (with a hint of red - don’t ask) and it was love at first sight.
Despite latching easily, I breastfed him for only a few short weeks before my milk supply waned and I was told “you are just a bad cow”. Switching to formula was such a huge weight off my shoulders. There was a lot going on with my mom at the time and so for Jude to be able to be fed with a bottle if I wasn’t around was a great relief.
Jude’s Bris( ritual circumcision of male babies usually 8 days old) was a beautiful big affair. He was the first boy born into the Miller family. He had lots of people from near and far at the TAC (Killarney Country Club). Of course my sister arranged most of it, from delicious food, coffee bar, sweet and chocolate station, awesome table décor and balloons. I had the best nurse around. She was very well known, an absolute life saver. The Guru on babies and my saving grace. I called her 100 times a day, she took every call, she was just my person. I remember her saying “Go and mingle with your guests. I’ve got this! Go say hi and thank everyone for being there.” All I wanted to do was be with my baby 24/7 but I left him sleeping and “enjoyed” what was left of the bris.
The name Jude means “praised” and his second name is Ashton which is after Wayne’s late father Ashley. It’s always been so hard for me that I did not meet him. We started dating two
We were so in awe of our baby boy. I did try and breastfeed for a few short weeks but as mentioned my milk supply dried up and so began the quest for the right formula. We went through around 100 formulas and landed up on AR (anti reflux) formula.. but of course, it was the hardest formula to get hold of. Jhb was obviously sold out. We went as far as to phone the head office and we had to have it shipped from Durban. So even from the very beginning, nothing came easy with our Judey boy. At the same time, he was just the cutest and most loveable little child.
When Jude was 21 months, his development was on point. He had begun talking and communicating as he should have. November 2014, Jude was around 22 months. Jude presented with terribly high fevers, was lethargic (and then not sleeping so it became a vicious cycle), wasn’t eating or sleeping and we couldn’t get a conclusive diagnosis. He cried constantly and eventually broke out in a rash, when the paediatrician and his locum at the time settled on Roseola.
Roseola is a very common virus found in young children. It is a generally mild infection that usually affects children by age 2. It occasionally affects adults. Roseola is so common that most children have been infected with roseola by the time they enter Nursery school. Two common strains of the herpes virus cause roseola. The condition typically causes several days of fever, followed by a rash. Some children develop only a very mild case of roseola and nevershowanyclearindicationofillness,whileothersexperiencethefullrangeofsignsand symptoms.
Roseolatypicallyisn’tserious.Rarely,averyhighfevercanresultincomplications.Treatment of roseola includes bed rest, fluids and medications to reduce fever. We felt relieved that they had gotten to the bottom of it.
It had been 2 weeks of going back and forth to paeds, locums and anyone who we thought would be able to help us. That night, Jude’s fever spiked once again. At this point Wayne and I were exhausted, emotionally and physically, the lack of sleep coupled with the fear of our child still being sick had us beside ourselves. We stayed up with him the entire night and raced back to the paed first thing in the morning and this time we refused to leave the hospital to go home to another sleepless night with our son still being so ill.
Jude was not eating or drinking, he was severely dehydrated. Despite being heavily pregnant with our second baby I moved into the hospital, where we stayed for the next 8 days. My motherly instinct told me that something was not right and there was more to this. I was adamant that we needed further help.
no viable veins which made this process even more shocking and he was poked and prodded all over, and held down while they tried to draw blood. He was completely traumatised by this so much that he lost his voice from screaming so much.
I remember on one particular day Wayne was kicked out of the ward for crying and shouting. By this stage we were shattered and I completely lost it, raising my voice and using a few choice words. I told the staff to get away from my boy and locate someone who would put an end to his pain. In marched a tattooed angel from the neonatal ward who managed to calm Jude down enough and draw blood to test. The test revealed that his platelet count had reached 1 Million. In children, a normal platelet count ranges between 150 000 - 450 000.
This was extremely dangerous and can be fatal. I got a second opinion from a great doctor who picked up the issue immediately and put Jude onto a immunoglobulin drip. The paediatrician at the time was called off the golf course that day and was made to come in – he then diagnosed Jude with – Kawasaki disease.
Kawasaki Disease-: condition that causes inflammation in the walls of some blood vessels in the body. It’s most common in infants and young children. Early stages include a rash and fever.Symptomsincludehighfeverandpeelingskin.Inlatestages,theremaybeinflammation of medium-sized blood vessels (vasculitis). It also affects lymph nodes, skin and mucous membranes,suchasinsidethemouth.Kawasakidiseaseisusuallytreatable.Initialtreatments includeaspirinandintravenousimmunoglobulintherapygiveninamedicalfacility.
But… Jude did not have kawasaki disease. I came to the conclusion that the paediatrician we had unfortunately chosen was not the right doctor for our son. Something was seriously wrong! My boy went into the hospital as one child and he came out a totally different one and it pains me to say this, but none of us have ever been the same. I have been waiting from the day Jude stopped speaking for him to speak again.
It is for sure 8 days I’d like to forget. They were some of the hardest, most traumatic days of our lives and somewhere in my subconscious I also feel one of the worst mistakes I have made by keeping him there. Twice daily he was held down while he had blood drawn, he had
We have had “promises’’ from schools to say: “do not worry, it’s coming” to “he has got this – it will come” Well… we are still waiting! We have met and spoken to many doctors – most from abroad. We have put Jude on protocols for speech, various sleeping protocols. We have done numerous blood tests, urine tests, MRI’s, EEG’s, stool samples - you name it, we have done it. We have sent tests to the USA and proceeded to have zoom consults with various doctors. We have waited weeks on end to receive specific medication. We had to find ways and means via friends of friends to bring this to South Africa for us. We have eagerly commenced with the recommended medication and protocols. from Vit B injections, suppositories, new supplements, eliminating medicines, getting the best probiotics, oils and supplements for good gut. We have even tried
CBD oils. If you’ve heard of it (or not) – we have tried it.
I have found that we are very limited here in South Africa. In my experience, I see how people do not know how to adjust to ‘different’. I see how adults are so ‘awkward’ around a ‘different’ situation and hence, their children lack the EQ to interact with others that are not like them.
In saying this, we have been blessed to be a part of some schools, who have the most amazing facilitators and have been with us on this journey. Some of these facilitators became more like family and definitely helped us get to where we are today. However, I still feel in my heart that we need more! Jude needs more.. He needs to be more independent and self-sufficient. We need to prepare Jude for this world… to be able to cope and to - Please G-d - one day be able to look after himself as best as he can. We are at a new school now, which we moved to during this whole covid period. It has been a good move for Jude. The school is really run so well and the principal is very much on the ball. She is connected to each and every child and involved in each child’s programme and progress.
I have met some wonderful people along the way, who also have special needs children. It is somewhat comforting at times to know that I’m not alone. However, each one of our stories are different and our children are unique in their own ways. I know that what may work for one is not always right for the other.
Every now and then, I wake up in a panic and I begin to question myself. Although I know in my rational state that I really am doing all that I can, the anxiety takes over and I begin questioning… Where are we now?
Where should we be?
Have we done enough?
Is he in the right hands?
Am I doing all that I can?
Could it be better?
Will Jude ever talk?
I know we have explored most options. I know we will continue to look for more answers. We do not know where our journey will end or if it ever will. One thing is for certain, we will continue to fight and ensure that we give Jude the best life that he could possibly have. I guess for now all we can do is carry on and never give up. Only G-d knows the answers!
The new normal
Jude only came out of hospital the 2nd week of December 2014. I was now 8 months pregnant and we felt that going away would be something that we all needed and definitely a change of scenery. We did consult with our doctors beforehand, and they thought it would be a great idea. Jude however was very distant – he was no longer my happy go lucky child. He was no longer singing and dancing, his speech had completely deteriorated. He did not want to eat. I was beside myself.
My friends and family assured me it was due to the trauma that he had been through and I just need to give him time to come around. But… I knew this was not the case. My motherly instinct said otherwise. Jude stopped eating all of the foods he used to after he came out of hospital. He used to enjoy most foods and especially his granny’s cooking – stews, spaghetti, butternut, avo and so on. When he was sick he stopped eating “normal food” and lived on plain pasta and peanut butter sandwiches.
February 2015 my son would finally start at the school where I had been teaching for years. I was elated that my son would get to experience the love and nurturing of this school – my happy place. I knew he would be in the most capable hands. I had been waiting for this day forever. It was early February and the day had arrived. Jude was 2 years old. I was about to pop with Taye. Jude was at school for the duration of 2015. His teacher at the time was a very close colleague and friend of mine. They called me about 6 months into Judes time there. They were concerned about his hearing amongst a few other things.
They said that he doesn’t turn around or respond when they call him or even if the door shuts closed. He does not like to participate in ring time or play with other kids. He prefers doing his own thing. At the time, this didn’t bother me too much as I thought it could just be age appropriate. They said that he “does not respond to his name being called and does not react to any exterior noises around him”. I actually made a joke about it – I said he probably has selective hearing. I even went into the classroom and whispered: “does Jude want chocolate?” and of course, he responded. But of course, being the mom that I am – I would never ignore this and so I took him for a hearing test to a very renowned paediatric audiologist. The test was 100% and his hearing was perfect.
But since the whole episode had happened with Jude, slowly but surely our little boy started ‘fading away’. From him talking, calling me ‘mama’, to pointing at objects, playing peek a boo, to
naming his favourite farm animals to knowing all of his colours, to asking for his botty and asking for uppy when he was tired, to calling his grandparents bobbi, zaidy and ganny.
We all realised he was not ok and something was seriously not right with him so we decided to take him to Dr B , (doctor one) a neurodevelopmental paediatrician. Only to find out she was full and had no space. We heard she was the best and Wayne was not having anyone saying NO to us. So of course I called to set up the appointment and the receptionist said “I’m so sorry Mrs Miller she has a waiting list of about 6 months”. So politely I said ok please add me onto the list and please please if anything comes up let me know, I’m really in a terrible state (sure she gets this all the time). Wayne then says to me “this is bullshit’ and called the receptionist and said “Hi I am Wayne Miller, we need to see Dr B urgently and I will phone this number everyday for the next three weeks until you give me an appointment. We have heard she is one of the best and right now that’s what we need and true to his word always, he called every morning at 8am so the receptionist started to answer the line “Yes Mr Miller’’ and eventually after those two weeks I think she made a plan to fit us in as Wayne was so annoying.
After every doctor/specialist appointment we had each and every doctor said that Jude had a receptive and expressive language difficulty. He presented with a very marked Apraxia of speech. We didn’t even know what it was, so we started speech therapy on the 1 May 2015 and we’re currently still at speech therapy.
I was pregnant with Taye when Jude got sick. I had around 13 weeks to go. Taye was born on the 23rd of February 2015, a dark and handsome second little miracle born to the Miller family. Jude was pale and fair and Taye was dark and had brown hair. It was just love at first sight and I know I was more relaxed with Taye. If he cried I could leave him for more than a second. Nothing was going to happen to him. He was either hungry, tired or needed a nappy change. Anyone could hold him, he wasn’t going to catch a disease and it’s ok to ask for help and I was allowed to go to the toilet on my own!
Taye was born in a very difficult time in all our lives, my mom was very sick at this point she couldn’t even hold Taye without help, her mind wasn’t good at all, it was truly heartbreaking and Jude was still not “ok” from his hospital stay and whole “illness” etc. So I was blessed to have Taye between all of this ‘chaos’. When he was born, I remember coming back those few days after my caesar and Jude was so cross with me he didn’t look at me for two days. I enjoyed some time with Taye as Jude started at my school at the end of January so at least he was in a happy safe environment. Jude loved going to school and adored his teacher and assistant teacher which was the biggest relief.
One Saturday in March 2015, this memory will stay as clear as day always and forever – my dad phoned me. This was odd as it was Shabbat (Jewish holy day of rest). He had asked if I could come over to help him with my mom. He had been up the entire night with her and just needed to get some rest. My mom had gotten worse and her brain was unable to shut down and switch off. Poor darling went for days with no sleep which of course meant the same for my dad. After a couple of intense hours being with my mom, I returned home. I walked in to find my husband sitting on the couch crying. “What is wrong? What happened?” He told me to sit down.. my head began to spin.
Wayne had been on Dr Google. “I think Jude has AUTISM,” he said. At that very moment, my entire world froze. I felt as if I was drowning and my whole world came crashing down into a million little pieces. It was April 2015 and my mom had deteriorated dramatically. She had stopped eating, she couldn’t take her medication properly anymore, her body wasn’t working properly and she needed full time care, which she wasn’t getting enough of at home.
We had to make the hardest decision of our lives. One that was not a quick and easy one, one we thought we wouldn’t have to ever make. We had to put my mom into a home. My Dad, sister and I went to see a few places. One or two were not even an option for my mom. We landed up going back to the first place we saw. When we walked into it, we found it peaceful, calming, and had a good relationship with the owner of the place. She understood our needs, and our expectations were met. I saw my mom everyday when she was there besides the first few days they had to settle her in.. She was always dressed beautifully and hair and nails were always done. My mom always had the most beautiful hands and long fingers! Something I think I also inherited from her.
Saturday the 16th of May.
It was an extremely strange day from the moment I awoke. I had dropped my hubby at his office around 9:30 am to fetch his car as he had left it at work the evening before. My sister and I were taking the kids to play in the garden and visit my mom that morning. As I was leaving my husband’s office my sister called and said where are you? I said I am on the way to meet you at mom? She said, “Please can you rather fetch us, I don’t feel like going on my own today”. I said with pleasure it was weird because my sister lives on the Sandton side and I’m in the opposite direction. I did wonder why, but for my sister I didn’t care and was happy to do it. As my sister
got into my car we had just about driven out of her complex when my phone rang and it was the home where my mom was staying. I thought it was weird but answered and the owner said “Your mom has taken a bad turn and is not well. You need to come.” I thought that was bizarre. I saw her yesterday. She was fine, absolutely fine, well not fine, but she was not sick!
My sister ran her daughter back into her house. I called my husband to meet me outside the home to come take Jude, as I didn’t want him to come inside. At the time, my dad kept Shabbat (Jewish holy day of rest) and was ironically staying with my sister that weekend. We really didn’t think my mom could be so sick, so we told him to stay home and as soon as we got there we would call him. As we walked into my mother’s room, we knew it was not good. We phoned our dad and he got there in a matter of minutes.
It was the strangest day ever, that call, that walking into her room looking at her grey, beautiful face and hearing that her breathing was alternating between a loud rasping breath to quiet breathing. I have heard that towards the end of one’s life dying people will often breathe only periodically with an intake of one breath followed by no breath for several seconds. I stood there looking at my mom thinking “Is this the end? But I saw you yesterday! You were not ok but you certainly were not dying!!! I looked at my sister, the tears rolling down her face and my dad too. I asked the sister on duty at the home if I could lie down and hold her. She said do what you need to. I’m giving you all some space and time.
My mom had suffered with this horrific disease for seven years and as much as we needed our mommy and never wanted to lose her, her mind was stolen all those years ago and she was “gone” at this stage. Even physically she wasn’t able to walk properly, chew and swallow food. Her brain was totally destroyed from this monster of a disease which we hate more than anything. So I climbed into the bed with my mom and my dad and sister around us and I held her and whispered in her ears, “It’s ok to go. We were so lucky to have you as our mommy, you will be loved and treasured forever, you can now be at peace.” Eventually her breathing stopped. She took her last and final breath........
I pray that she felt all of the love and care from us on that day and that she left here knowing how incredible she was and how much we appreciated this incredible lady. As it was the Sabbath we had to sit with my moms body until after sunset when the Chevra Kadisha (which literally means Holy Society, are a group of Jewish people who care for the deceased to prepare them for burial. This is seen as one of the most important Mitzvot (good deeds) you can do, as the deceased person cannot thank or repay you for the help you gave them. My younger brother got onto a plane that evening from Israel to join us for the funeral.
I wish I could say that I remember my mom – the mom who gave birth to me and raised me to be the person that I am today. It’s kind of funny, as I know she is completely a part of me and I am very much like her, yet I feel as though the bad memories have outweighed the good. I’m struggling to get back to who she was. I’ve realised that over the many years, I built up a wall – to keep me going and functioning. Now the hard part is going to be for me to break it down piece by piece. It was such a relief to know that I didn’t need to see her like that anymore but why did she have to get such a horrific disease in the first place? It was the hardest, most terrible seven years for myself and my family to watch and see my mom like that. Sitting and watching the person you love more than anything fade away.
I once read a poem that stuck with me.
IUNDERSTANDbyJoyRembert
Howdifficultitmustbeforyou
Towatchmebecomelessofthepersonyouonceknew
Mybodyishere,butmymindisnot
Thethingsweonceshared,Imayhaveforgot
Thiswillbethelongestgoodbye
Forthemindofthepersonyoulove,isslowingandwilldie. IwillnotactorbehavelikethepersonIoncewas, butpleaseremember,it’snotsomethingIhavecontrolof, I’msorryforthisburdenIputonyou. Therewillbesomeroughdays,withtearyeyesandheartsofblue. Butlettheloveofsomanyyearscarryustherestoftheway, becausethisisnotforeverandoursoulswillmeetagainoneday.
This is the first of the five stages of grief. Other versions of denial are avoidance, confusion, elation, shock and fear. It helps us to survive the “loss”. In this stage, the world becomes meaningless and overwhelming. Life makes no sense. We are in a state of shock and denial. We go numb. We wonder how we can go on, if we can go on, why we should go on. We try to find a way to simply get through each day. Denial and shock help us to cope and make survival possible. Denial helps us to pace our feelings of grief. There is a grace in denial. It is nature’s way of letting in only as much as we can handle. As you accept the reality of the loss and start to ask yourself questions, you are unknowingly beginning the healing process. You are becoming stronger, and the denial is beginning to fade. But as you proceed, all the feelings you were denying begin to surface.
It was so hard with Jude because we went from doctor to specialist to paediatricians to healers. You name it, we did it and only one person, who happened to be the principal of the school that Jude attended, said that he is Autistic. We know it is just a label. I know today I’m ok with it but at the time it’s the last thing you want to hear. It feels like someone is digging a knife into your heart.
It is common to experience anger after the “loss” of a loved one. We are trying to adjust to a new reality and we are likely experiencing extreme emotional discomfort. There is so much to process that anger may feel like it allows us an emotional outlet. Keep in mind that anger does not require us to be very vulnerable. However, it tends to be more socially acceptable than admitting we are scared. Anger allows us to express emotion with less fear of judgement or rejection. Unfortunately, anger tends to be the first thing we feel when we start to release emotions related to loss. This can leave us feeling isolated in your experience and perceived as unapproachable by others in moments when we could benefit from comfort, connection, and reassurance.
We still go through our stages but the anger has faded somewhat. What will it help? Am I angry at the doctor who didn’t give Jude the correct medication when he should have? Obviously. Am I angry at myself for not getting a second and third opinion when I could have? Yes. I am angry because this all happened and a part of me will always be.
When something bad happens, have you ever caught yourself making a deal with G-d? “Please G-d, if you heal my son, I will strive to be the best person and mom I can ever be – and never complain again.” This is bargaining. In a way, this stage is false hope. You might falsely make yourself believe that you can avoid grief through a type of negotiation. If You change this, I’ll change that. You are so desperate to get your life back to how it was before the grief event, you are willing to make a major life change in an attempt toward normality. Guilt is a common wingman of bargaining. This is when you endure the endless ‘what if’ statements. What if I had left the house 5 minutes sooner? The accident would have never happened. What if I had made Jude go to the doctor two weeks before and not taken no for an answer when they sent us home the first time or maybe the bloods could have been done sooner and he could have been saved?
Depression is a commonly accepted form of grief. In fact, most people associate depression immediately with grief – as it is a “present” emotion. It represents the emptiness we feel when we are living in reality and realise the person or situation is gone or over. In this stage, you might withdraw from life, feel numb, live in a fog, and not want to get out of bed some days. In our case we had no choice. There was this little thing who needed us more than ever and there was no option of staying in bed, curled up with tissues, chocolate, tea and watching a movie that makes you want to slit your wrists. The world might seem too much and too overwhelming for you to face. You don’t want to be around others, you don’t feel like talking, you experience feelings of hopelessness.
But you can try to remember what you are needed for, that you are so loved, your son and family can’t do this without you. So have your bed days, have your coffee dates with mates, drink that wine, do whatever you need that makes the day a little easier and gets you through it. One day at a time.
The last stage of grief is acceptance. Not in the sense that “it’s okay my child is Non-Verbal” rather, “he has Apraxia, but we are going to be okay.” In this stage, your emotions may begin to stabilise. You re-enter reality. You come to terms with the fact that the “new” reality is that your son is probably “never coming back” – and you’re “okay” with that. It’s not a “good” thing – but it’s something you can live with. It is definitely a time of adjustment and readjustment. There are good days, there are bad days, and then there are good days again. In this stage, it
does not mean you’ll never have another bad day – where you are uncontrollably sad. But, the good days tend to outnumber the bad days. In this stage, you may lift from your fog, you start to engage with people again, and might even make new relationships as time goes on. You understand your loved one can never be replaced, or changed but you move, grow, and evolve into your new reality.
We realised that we needed to see what was going on in Jude’s brain and so we were fortunate enough to get in with Dr. A (Doctor Two) a paediatric neurologist. The first step was to do an MRI and an EEG. The MRI was vital and should have been done sooner than it was, /Unfortunately the EEG was not successful as Jude struggled to keep still with a million wires stuck on his head. We had to then do an overnight EEG at our house a few weeks later but we needed to wait for him to get over this hospital trauma.
We arranged for this lovely lady to come to our house. We had to ‘drug’ Jude. Once he was fast asleep, they connected the wires to his little head and luckily for about 12 hours the EEG was read correctly. The results came back clear – no signs of epilepsy and we were told there was nothing to worry about.
In 2016 I came to the realisation that things were becoming more difficult for Jude at a my school and he was struggling to manage. This absolutely broke my heart, but after much research and help from others we moved him to a speech and hearing school. It was a fantastic school and we were so thrilled to be there. We had amazing therapists and a wonderful teacher who adored Jude. We were introduced to an entire new world. We had to go for hearing tests which wasn’t as simple as it sounds. Jude could not sit still so eventually we had to redo the appointment and Jude had to be sedated. The test took an hour or so and it turned out he had perfect ears and hearing was crossed off the list. Jude was not deaf but why was he not responding to certain things?
Jude loved his new school and was very happy to get on with the day and was always smiling when he was dropped off in the morning and picked up at hometime. It was going well (or so we thought). He was attending Occupational Therapy twice a week, Speech Therapy and we were hoping it would all come together.
Things were not going as well as we thought. We were called in for a Parent Teacher meeting and it really was a tough one. They said to us, Jude has settled beautifully. He is trying his hardest but we feel this might not be the right school for him! We were like “What do you mean?” They said Jude cannot sit in a ring with other kids, he plays on his own, he is “far away”, he doesn’t retain things. We feel Jude might be on the “spectrum”. They were confused. There were some things he knew and some things he could do which were great but other stuff which they felt he should be doing at his age which he couldn’t.
So now a decision was made that Jude required intense one on one teaching and in January 2017 he started at another school. This was a special needs school for children on the autism spectrum.
about, I was just so desperate to get answers! A lot of the time things came up about Jude having a brain injury from the high fevers he experienced when he was sick.
When it comes to Social and Emotional behaviours for your “typical” people social communication is instinctive. People with ASD want so badly to socialise but it can be so challenging because it is a cognitive process not an instinctive one. For example: it would be like reciting your 13 timetables and having a conversation with 5 people all at the same time. The mental gymnastics required are exhausting. Those on the spectrum feel their own emotions very deeply and are very empathetic so it can be overwhelming. This empathy means that they make very good friends and are also very trustworthy, loyal, honest and very kind.
Therepetitionofphysicalmovements,soundsorrepetitivemovementsofobjects. Itisaphysicalexpressionofcommunication,suchasexcitement,anxiety,exhaustion,andalso sadness.Itcancalmandorawakenthesensorysystem..
Anxiety
Mostpeopleonthespectrumhavesomeformofanxietyandworry.Fromgeneralsocialanxiety toananxietydisorder,itunfortunatelyisaconstantcompanion.
Communication
The abilities in communication for people on the spectrum are as diverse as their individuality. Autistic people have the same desire to communicate as anyone else but you need to change howyoulisteninordertohearthem.
The information sent from your senses to your brain can be hypo or hyper or confused due to synaesthesia (production of a sense impression relating to one sense or part of the body by stimulationofanothersenseorpartofthebody).Thiscausesalotofchallengesforpeoplewith ASD. When their sensory experience becomes overwhelming it can often cause a meltdown whichcanbeexplosiveorimpulsive.
In between all of this I was always taking him for more tests and I was constantly reading up on stuff. I took him for Body Talk sessions numerous times, to healers, to reflexology, to homeopaths you name it, I tried it. I did some whacko stuff which at the time, my husband didn’t even know
This school assessed Jude from the inside out. It seemed like we had a lot of work to do with him. We were very overwhelmed and started the next chapter of our journey with Jude. Having a child who is non verbal is a living nightmare. It was much easier when he was smaller.
At the first school Jude attended, the speech therapist introduced us to PECS cards. PECS stands for the Picture Exchange Communication System. PECS consists of six phases and begins by teaching an individual to give a single picture of a desired item or action to a “communicative partner” who immediately honours the exchange as a request. The system goes on to teach discrimination of pictures and how to put them together in sentences. In the more advanced phases, individuals are taught to use modifiers, answer questions and comment. PECS were successful to a point but still not good enough for Jude. I took pictures of everything in his world - in our house and every place he knew and had photos printed. Some were stuck around the house, some were in a file. It was good for a few weeks but didn’t work out!
The second school introduced us to this App on his iPad a few years back called Touch Chat which has been a life saver for us all. TouchChat is a full-featured communication solution for individuals who have difficulty using their natural voice. TouchChat is designed for individuals with Autism, Down Syndrome, ALS, apraxia, stroke, or other conditions that affect a person’s ability to use natural speech. Touch chat definitely opened our eyes to a brand new world and helped us in so many ways. Jude’s previous school had told us about this app but it was not cheap and we were hesitant at first. But it was worth every cent and it truly has helped us understand much more often what Judes wants and needs. How it works is to enable the user to produce spoken messages, words, phrases and messages using digitised speech.
Everything in Jude’s world and what he knows and has learned is on there - from colours to numbers to letters to his family to teachers, his therapists to locations that he is familiar with, to all the food he eats to the animals he knows, the toys he plays with, the rooms in our house literally everything in his world. How this works is there are pictures on the app and it talks to you as you touch it. As you learn more so you can keep adding. You can construct sentences on it.
Touch chat has a library of over 10 000 symbol stix(is an evidence-based symbol communication tool), four pre-programmed vocabulary organisations, spelling with basic word prediction and it can all be customised to suit the individual’s needs. Jude’s `whole world” is on there, everything he wants, and that he knows, including all the people who are important to him and that he needs to know and that he trusts. The bonus is you can keep adding as you go along so if I find
a new snack he’s into we add it then he can ask me if he ever feels like it again so I know to get more.
If he wants to go outside, if he needs the toilet, if he wants pasta, if he wants to be picked up, or to play running games, or he wants to swim, or to sleep he will ask us. There are times where he is so frustrated he doesn’t want to use the iPad as it’s not close to him or he’s in a mood and just wants what he wants and expects us to just know what he is screaming about. That is so challenging for him and all of us. What is the hardest part of this whole non-verbal life we are living is feelings and emotions. Jude cannot express the way he feels. When he is sick he can’t say “mom I have earache.” He knows his ears and he knows that if you bump yourself you will be sore but cannot understand it and put it together.
Jude attends private speech therapy three times a week where he does Prompt training (which stands for Prompts for Restructuring Oral and Muscular Phonetic Targets). This is used to restructure the speech production capabilities of children with a variety of speech disorders. It is a tactile-kinesthetic approach to speech therapy, which means that the speech-language pathologist uses touch cues on the client’s face (vocal folds, jaw, lips, tongue), to support and shape correct movement of these articulators. Both his speech therapists and facilitators used it on him. I found it difficult to follow PROMPT and even after watching numerous videos on it, I struggled doing it with Jude.
It is all definitely helping. We are finding Jude is improving cognitively daily but we are so worried for his future. Where to from here? Is he ever going to speak? Where is he going to land up? I don’t want him in an environment, which is one-on-one teaching forever. When will things change?
Jude cannot talk but understands SO much his frustration level is through the roof and so is ours. He has amazing facilitators who are like family to us, who work with him everyday from 8am3pm trying to catch him up and get him to where he should be.
ABA (Applied Behaviour Analysis) focuses on one-to-one therapy and each program is designed specifically to the deficits of that specific child. The second school was and still is an amazing place and has been the best thing for Jude but I don’t want him to be there forever.
his body works like clockwork and boy he knows!
We struggle every day. Some days are so rewarding, others are completely exhausting but wow do we love him! I don’t think there is a kid who gets kissed and hugged and loved like Jude. His family, our friends and everyone who knows him adores him. He is a mommy’s boy and he follows me all over. He is super bright, he has so much love to give, his smile literally melts my heart. He has a warm loving nature, loves to be around people especially kids, enjoys outings and loves swimming and nature. His younger brother Taye is his biggest teacher. He is so amazing and patient with him and he is such a super star. I know things could be worse and we are so blessed in so many ways but it’s hard and it’s exhausting and we want our boy to talk and to tell us when he has a nightmare, or a sore tummy, or is scared or is excited or just to say “I love you”.
In April 2023 we had quite a scare which highlighted this exact challenge. I didn’t realise that kids’ teeth still fall out at 10, sometimes older. Our helper D called me while getting Jude ready in the morning and said “Oh wow Jude’s tooth is out! It’s nowhere!” She was so upset that he didn’t have the tooth, she so wanted the tooth fairy to come. I didn’t even know he still had baby teeth. I didn’t even know it was loose, poor boy!
I was shocked and messaged my cousin who is a brilliant dentist and sent her a picture and said “Please tell me this is ok, and not a big tooth!” Thank goodness she replied, “All is good, it’s a baby one”. We looked all over, accepted that he might have swallowed it and moved along. Then I had a chat with Jude explaining to him that he needs to bring his iPad to me and show me his tooth is bothering him. I know he hears me and seems to understand what I am saying, but does he really?
Having a child on the spectrum is tough, everyday is a battle. You also don’t know what you are going to get. Is he in a good mood this morning? Has he woken up crying? If yes, the day will probably be a disaster. If he wakes up, opens the curtains and comes out of the room himself, we know it’s probably going to be a good one! We have a strict routine! Jude knows when it’s snack time, lunch time, bath time and bedtime and G-d help us in this house if things are not ready as
Two days later Jude decided to wake up at 4am which isn’t abnormal for him. He barges into our room, grabs his iPad and goes back to his bed to watch. Around 6am he starts shouting for our attention which can only mean one thing, he’s hungry. It’s more of a scream or moan than a call. I go into his room and it looks like a crime scene. There’s blood all over his pyjama top, his cushion is covered and all around him are red splatters. I screamed for Wayne, shaking while looking all over him, saying “Jude, what happened my boy, where is sore? I looked all over his head and body and then I looked down and lo and behold, there were another two teeth! They had to have been loose? I sent my cousin another message this time with a picture attached and said “OMG what the hell please just tell me they also baby teeth”. Yes they were and they had to have been loose for him to yank them out like that.
It’s all just so hard, not knowing they were loose and bothering him, for him not to be able to call me when that happens or even just to acknowledge that there was blood everywhere and not
come tell us or scream for us. Heartbreaking once again. By the way, while I’m frantically looking for where the blood might be coming from…Jude opens up his ipad program and asks for “OATS”!
The latest MRI that was done in the hospital overnight in early 2019 indicated scarring in the region of his frontal temporal lobe. His neurologist and some other doctors who we have dealt with in the USA are quite sure that during his stay in hospital those years back he had some form of encephalitis that was not picked up and might have been the cause of all of this. The scarring on his frontal temporal lobe is a major problem as it interferes with personality, thinking, planning, motor execution, executive functions. Frontal brain injuries create personality changes and cause very poor problem solving skills which he needs in everyday life.
Jude is so bright and knows and understands so much even though he can’t express it. It is all he knows but it’s totally heartbreaking to watch and so frustrating for this poor little angel to not be able to communicate like we can and just be able to say “Mommy my tummy hurts” or “I’m scared, I need you”, or “stop kissing me please!”
When Jude walks out the door in the morning or once we drop him off at school, I always say a prayer or just take a deep breath and hope for the best. I pray that people are kind to him. I pray that he is looked after the way that I would look after someone’s child. I pray that he is not getting bullied or that another kid or adult is not hurting him in any way. I hope that when it’s snack time someone watches him in case he chokes and he can’t shout for help. I hope that someone checks that he is clean after using the toilet. How do I know? I don’t and I won’t. It’s all in G-d’s hands.
APRAXIA
Childhood Apraxia of Speech (CAS) is an uncommon speech disorder in which a child has difficulty making accurate movements when speaking. Apraxia is caused by brain disease or damage. The brain is unable to make and deliver correct movement instructions to the body. Thebrainstruggleswithlip,jawandtonguemovements.Othertypesaffecttheaccuracyoflimb movements,responsetoverbalcommandsandfacialmovements,suchaswinking. Treatmentmayincludephysio,speechandoccupationaltherapy.
Apraxiaiscausedbyadefectinthebrainpathwaysthatcontainmemoryoflearnedpatternsof movement. The lesion may be the result of certain metabolic, neurological or other disorders thatinvolvethebrain,particularlythefrontallobe(inferiorparietallobule)ofthelefthemisphere of the brain. The main symptom of apraxia is an inability to carry out simple movements, even though a person with apraxia has full use of their body and understands commands to move. Peoplewithapraxiamay finditdifficulttocontrolorcoordinatemovementsvoluntarily.
Theseindividualsmayalsohavebraindamagethatcausesaphasia,alanguageimpairmentthat reduces the ability to understand or use words correctly. In CAS, the brain struggles to develop plansforspeechmovement.Withthisdisorder,thespeechmusclesaren’tweak,buttheydon’t perform normally because the brain has difficulty directing or coordinating the movements. With apraxia of speech a person finds it difficult or impossible to move his or her mouth or tongue to speak. This happens even though the person has the desire to speak and the mouth andthetonguearephysicallyabletoformwords.
To speak correctly, your child’s brain has to learn how to make plans that tell his or her speech muscleshowtomovethelips,jawandtongueinwaysthatresultinaccuratesoundsandwords spokenwithnormalspeedandrhythm.CASisoftentreatedwithspeechtherapy,wherechildren practisethecorrectwaytosaywords,syllablesandphraseswiththehelpofaspeech-language pathologist.
Jude’s case of Apraxia is severe and we are not sure if he will ever talk. It has been years of trying everything, from therapies, to having bloods tests, to every medication out there from from all around the world, to local to stuff, having consults with doctors in the USA who deal with thousands of kids like Jude, to giving him Vitamin B injections every third day in his little bum because we heard that could help. You name it we have done it.
Being that Jude is unable to communicate clearly about his day, people he interacts with, whether he’s happy, sad or hurting leaves me with a recurring nightmare - if someone was torturing him, I wouldnt have a clue and I couldn’t save him. What I would like people to know - and as a mom I am asking you to teach your children - to be kind, to be strong and to speak up when you or they see an injustice. I need you to watch out for my child and other vulnerable children like Jude.
I’m not perfect, far from it in fact, I have had to develop coping skills as a special needs parent from when you get an initial “diagnosis” and dealing with both grief as a parent and guilt as a parent. Being a parent of a special needs child is not something that I would have signed up for. Parents with kids on a spectrum take on so many roles in their child’s education and everyday life. You need to first recognise and pursue a diagnosis as hard as this is, and as terrifying as it is. Then a suitable program needs to be found for your child in terms of skills , schools etc. We are not just parents at home we become teachers also, I had to do monthly training to bring skills that were taught at school, home so Jude could generalise his skills.
There are some days that are downright difficult and feel as if we live in a zoo, and things are hectic and we are all over the show and there is so much stimming going on and loud noises that just don’t go away and you totally feel like your head is going to explode. There are days where
Jude is as calm as ever and he can play outside for hours and you won’t hear a peep, and there are other times where there has been a change in his environment, or something is going on in his gut, or some inflammation in his brain, or we have changed supplements and this can set him right off and he can babble away from 7am-8pm on top of his voice all day non stop. It is exhausting and totally draining and he does not understand that enough is enough and STOP IT NOW or else mom will crack!
All Jude expects is breakfast as he wakes up. He is exhausted when he wakes up in the morning, due to the pills he takes so we either carry him to the kitchen or he will hesitantly walk. He either eats gluten free oats or gluten free toast with almond butter, we alternate every day. Once breakfast is over he goes with D (our helper) to his room to get dressed and brush his teeth. Then back to the kitchen to take his morning medication which mainly consists of vitamins and supplements.. Then he does his hair and goes straight to the car. Whether we are ready or not it’s tough he will go and wait and if we take too long, boy do you will hear all about it!
The guilt comes in when we so badly want to go to a friend’s house as a family on the weekend but we’re nervous how Jude will be. Or maybe he woke up in a bad mood that day, or maybe the food there is not right for him (even though you have packed a million things for him) he still wants what everyone else has, or maybe he will just break something in the house. Truth be told, we’re blessed with the best friends and the least judgemental people in our lives but it’s not fun, we are on edge all the time and Wayne and I find it easier to just be home.
Pre-covid we did find an amazing caregiver who came some Saturdays to play with Jude so we didn’t have to miss out on some important function or to just take Taye out and have some respite. It is constant back and forth communication. If Jude needs the toilet, if he wants something to eat, if he wants to go outside, you have to say “what do you want to show me on your iPad?” He will type “ I WANT” then, food column, Apple. Then he will go to the fridge once I have said yes and I will make him say “apple” after me. Then he washes and dries the apple. This is with everything. Opening and closing the doors, washing hands, going to the toilet, ready for sleep, wanting a snack, and the list goes on. It’s draining all day. It’s never ending.
The truth is, for years following Judes illness, we yearned for him to start speaking. I’d ask each new doctor or therapist we met, “but will he ever talk?” I was a new mom, and I wanted to hear his sweet voice again so badly. What I didn’t realise is how many different ways there are to communicate and boy we have tried most of them.
doesn’t mean they don’t understand you either. Of course, I still hope and pray every night that he will talk one day, and we’ll be able to hear his voice more and more, but fundamentally, I want him to be able to express himself fully, through the speakers of an iPad or with that sweet, little voice.
Non-speaking communication is a pretty amazing thing at times. Jude communicates mostly with sounds, squeals and screams - with a few words, like hi, bye, mama, ball, up, go. He points a lot and brings things to us and brings us to things. He places his hands on ours and guides them in certain ways and he touches our lips and uses his hands to turn our faces to see things when he really wants to get our attention.
He uses his iPad to show us pictures or videos of things he wants to tell us about. He does some typing. But only words that are important to him. Like balls and oreo, which is his favourite food and a few others - but those are the most important to him.
He had some words. They come and go. That is his apraxia. You might not understand him, but I know every word because we spent hours, days, weeks, months and years practising. I’ve placed his fingers to my own lips to feel the vibration of my sounds. Every sound is a gift because I saw the mountains he had to climb to get them. Every year we thought he would talk. That’s what I told myself and others said so along the way too. We longed for this. I am asked all the time if I wish that Jude talked. I won’t lie. I would love words. I will never stop wanting them.
When Jude started ABA therapy, I learned of all the ways someone can communicate, and my desperate yearning to hear his voice evolved to merely wanting him to communicate. Jude is at the stage now where he can ask for food, sleep, swim, his favourite toys, his family members, his favourite tv show etc. It is not nearly enough for both him and us. We are at a very hard stage and age and frustration is building as each year passes, Jude is trapped.
There’s more to communication than words. “Nonverbal” doesn’t mean no communication. It
When Jude got out of the hospital everything changed but the one thing that was evident and a major scare and problem was his eating. Meals were a disaster. Before Jude fell ill and was hospitalised he was generally a “good eater” he ate a little bit of everything, he enjoyed most foods. Loved his granny’s cooking from stews, to spaghetti bolognaise to Avocado and cream cheese, butternut and didn’t mind trying new things. During those three weeks of him being ill he hardly ate anything and we were lucky if we could get liquid down, he was just so miserable and so ill.
I remember the day he was given his immunoglobulin drip and his fever finally came down and his platelet count was normalising. I asked them for some french toast in the hospital and for the first time in nearly three weeks he lifted his weak little arm and started nibbling on it. I sobbed happy tears for the first time in so long. So much changed after that, Judes diet consisted of bread and peanut butter, pasta and cheese and macaroni and Pediasure. It was a complete disaster and a huge stress. His brain was not getting what it needed.
When Jude started at School 3 we were introduced to the “world of Autism”. We were shown that a healthy brain and healthy gut will result in helping your child get better. They told us “he needs protein, he needs a gluten free diet, he needs to be off dairy!!” I was like, are you crazy? That’s everything he eats. They asked, “Do you want him to be better?” So that’s where our food journey began.
We did an intense feeding program for a year which was run by the most brilliant lady! After so many tears and lots of cooking we succeeded and today Jude is the best eater in the Miller house! Immediately we saw a change and he was more switched on. His eye contact was so much better - it was a miracle.
Whatisafeedingdisorder?
-Difficultieswitheating/drinkingthataffectweightandnutrition
-Food or fluid refusal
-Food or fluidselectivity
-Possiblebehaviouralproblemsduringmealtimes
-Skill deficits
At Judes previous school he had a team of angels (our facilitators). They told us about a feeding program that would help us get him to eat, but said it would be tough and that they need my full commitment and you have to be ready for it. I said “anything that will help, let’s go for it!”.
We had no idea what we were getting into but I also knew my child knew what he wanted and you could stand upside down, you could offer him the world’s biggest ice cream or chocolate if he would just eat something healthy it was NOT happening. I sat down with the head of our team at that time and she explained what was going to happen in the next few weeks ahead but wanted to know if we had a preference of food we wanted to start with. I was quite desperate at this stage to get some nutrients into Jude asap so I thought let’s start with chicken - plain bland chicken.
This went on for months and months! We did a protein, then a veg, then soup, then a fruit, then A feeding program was designed specifically for Jude and what he needed.
The therapists started small, by small I mean the tiniest bit of food on a spoon and if he took the food successfully, chewed and swallowed it without gagging he was reinforced.
A reward chart was designed for Jude using pictures of his favourite item, which is a ball. Jude was given a picture of a ball that was out on his chart every time he had taken and successfully eaten that one bite of food.
A therapist sat with him, laid out the reward chart, had the food in sight as well as a timer. The therapist put a small amount of food on the spoon and told Jude to take a bite and a timer was set to see how long it would take Jude to take the food off the spoon.
If Jude didn’t take the food or if he had gagged the whole process was then repeated until he took the food and ate it and earned his reward on his chart.
The therapists went through a variety of foods, only presenting one food at a time until he was successfully eating that certain food and then they would move on to another food.
Once Jude was eating a variety of foods the program changed to teaching Jude to few himself. The process was presented the same way but this time Jude had to take the spoon himself and feed himself also getting the same reward.
Once Jude was successfully feeding himself across the foods that were originally presented to him, he was exposed to all kinds of foods and that’s how Jude started eating again and feeding himself another protein etc etc. It was tough for him, for the facilitators, for us as I knew how
hard the day at school was but I knew that if this child didn’t get any nutrients into his body fast he would be “lost” in his little world forever.
Slowly but surely Jude started coming around. His eye contact was getting a little better. He responded better when people called him. He just seemed more with it. Sure you have all heard about the connection the Gut and the Brain has and how important it is to eat healthy in order to feed your brain. There is such a strong connection between the two. Chemically. The gut also connects with the brain through chemicals like hormones and neurotransmitters that send messages. The chemical messages that pass between the gut and the brain can be affected by the bacteria, viruses, and fungi that live in the gut called the gut microbiome. Millions of nerves and neurons run between your gut and brain. Neurotransmitters and other chemicals produced in your gut also affect your brain. By altering the types of bacteria in your gut, it may be possible to improve your brain health.
He is on a Gluten free diet. We do allow him to have ‘cheat days’ like we all do but we can see his behaviour changes immediately when he eats the wrong things. It’s so hard! We can’t just decide we’re going out for lunch or to just go sit at any restaurant. Will Jude be okay there? Is it appropriate for him? What food is there? Will he have a meltdown? Let’s rather stay home!
I had bumped into a cousin of ours randomly (or as they say by chance) in a shopping centre one afternoon. I had not seen her for years. We had a catch up on how our families were and one thing led to another and she told me to contact her regarding Jude. She is a very spiritual learnered lady and had some amazing insights and helpful tips regarding getting him off dairy and on to almond milk. She actually came to my house and helped me change his room around to a more calming space. She also helped with some toilet training tips which along with his school at the time came together and worked out so well, so together with my special cousin and school these changes were massively positive on Judes journey.
Jude also struggled with cutting his hair and brushing teeth. The brushing of his teeth was a non negotiable and we had to hold him down every day and night to get it done. I remember my dad once visiting and he came storming into the bathroom to see what had happened to Jude as he thought something really bad, but in fact it was Wayne brushing his teeth. On numerous occasions we have had to apologise to our awesome neighbours for all the screaming and shouting.
getting anything done and this special lady being completely traumatised she just couldn’t do it anymore and to be honest neither could we. So the school introduced us to a desensitising program which went something like this.
We were asked to bring a hair razor, hair scissors and a gown all to school. For about two weeks the facilitators got Jude to hold onto the razor, switch it on and off, hear the sound, and feel and play with the scissors. They also practised Jude wearing the gown for a few minutes each day. It would be timed and of course went up all the time. Once he was able to tolerate all the above they would then get into the car and drive past the Barber shop in Norwood where we used to go. They did this for about a week. They would stop outside and look in the window. The following week they would park the car then go into the barber shop say hi to the Barber sit on the chair play in the shop swing on the chair, this also happened for about a week. Then finally around a month later Jude Wayne and the Facilitator went to have their first haircut. Was it perfect? No. Did he cry? A little. But oh my word it was one million times better and he just got better and better each time and got rewarded at the end of every haircut. These facilitators saved our lives and helped us in so many different ways they are angels all of them. I do miss each and everyone of them.
Jude also struggled with having his hair cut, the shaving part and the cutting of the scissors freaked him out. We used to have this amazing lady come to our house to cut Jude’s hair at home but after holding Jude down and getting hair, snot and everything else all over us and barely
An acute respiratory illness in humans caused by a coronavirus, capable of producing severe symptoms and in some cases death. It originated in China in 2019 and became a worldwide pandemicin2020.
Lockdown was an absolute nightmare for both us and the kids as well as everyone around the world. But for special needs kids even more so. Their routine and their life as they knew literally came to a halt. The very first lockdown was when Jude was still at his previous school. After a month of having him at home he was climbing the walls. Online was not an option. We were all struggling so I phoned the school principal at the time and I said we need a plan here. We need some structure, we need something before I run away. She said she would get back to me as she always did and helped when we needed it. She came to the rescue and lo and behold one of the five facilitators we had at the time moved into our spare room for the next six weeks! This helped us so much. Jude had his “school” day for 5 hours every day, weekends were normalour facilitator had “off”. She joined us for meals when she wanted to and Judey was getting the stimulation he needed and we were getting the help and time that we needed as well.
These are some of the ways that we tried to make things more manageable at home.
Regular bed and wake-up times, meal and snack times, screen time, chores, and other household routines.
New routines to include school work, breaks, and exercise.
We helped him take control by giving a couple of choices. For example, we let him choose what to eat for lunch. When doing school work, we asked what he wanted to do next. Visual schedules and to-do lists helped him know what to expect, while timers and 2-minute warnings helped with transitions.
We learned that having a set routine and clear expectations help lower the anxiety that can happen when things change.
screaming on top of his voice and biting himself on the arm and wrists. We learned to find ways to help Jude to express feelings.
To help kids work through strong emotions, try:
Talking together
Doing crafts
Writing (if they able we “type on ipad)
Playing or acting out fears
For kids who are nonverbal, use augmented (or alternative) communication devices Try calming activities, such as deep breathing, music, or watching a favourite video throughout the day.
Exercise also can help ease anxious feelings.
Getting covid with a non- verbal child was tough. “How do you feel Jude? Have you lost your taste? Is your head pounding like mine? What are you feeling?” It was a very stressful few weeks. You ask Jude are you sore in your head? He will point to his head.
Tummy sore? Point to his tummy. When he sticks his fingers in his mouth is it because his teeth are sore, his throat is sore, what is wrong? Why are you screaming, are you frustrated, or are you feeling sick?
Those weeks being at home, out of routine, no school, no time-out were tough for Wayne and especially difficult for Taye. For Jude it was hard at times like when he was out of routine or sick but besides that, I don’t think he was unhappy at all.
That July, I had booked a trip for Jude and I to go and stay with my family in Melbourne, Australia. The reason I booked this trip is because my family immigrated there 35 years ago. It is the only aunt, uncle and fi rst cousins that I have. (My dad and his brother married my mom and her sister) My cousin Talli who is now 41 studied Disability Studies and Augmentative communication. After some time, she began training as an ABA (Applied Behaviour Analysis) therapist with consultants from Autism Partnership in America who at the time were working in Melbourne. For many years she worked as an ABA consultant and therapist overseeing ABA Programs. For many years she worked as the Inclusion and Learning Support Coordinator in a mainstream preschool setting and more recently as the Head of Inclusion at a mainstream school supporting children from the ages of 2 in a preschool program to children in grade 6 in their last year of primary school.
Kids with autism who feel frustrated, worried, or scared may have more repetitive behaviours (like hand flapping or rocking), tantrums, and other challenging behaviours. Jude started
Talli looks after kids like our Jude and is so brilliant at her job and is very well known in her industry. Talli has many resources and knows many doctors and therapists dealing
with kids similar to Jude. Jude and I had got our visas and had a whole programme set up for us. We were meant to go for approximately 6 weeks. We planned to meet a bunch of specialists and therapists. The aim was to get further help and some new and improved ideas and guidance in the “right” direction. The trip unfortunately never happened. #F*%$@ -You – Covid#
My disappointment was immense. I have since realised that it clearly was not part of our journey. Well not for now anyway…
Jude went through a non-sleeping phase for years, so Wayne and I used to take turns when we could try to get a few hours in, otherwise we really were zombies the next day and both had to get up for work. It was much harder on Wayne because I’m lucky in the sense that I can fall back asleep when woken up. Once he’s up, he’s up!
So, I’m a big migraine sufferer which I have mentioned before. I often take a drop (and I mean a drop) of CBD when I really have a bad migraine or need a good schlof (sleep). That night it was Wayne’s turn to sleep on his own and mine to climb into bed with Jude praying for that miracle he would sleep through!
We watched a movie and then Wayne said he’s taking some of my oil to relax him and hopefully let him sleep a full night. “Great babe,” I said, “ONLY one drop.” He said “yes yes i know”. He then said to me “I needed to take a drop more as I spilt it all over my top and don’t think any even got in my mouth”. The truth is the one drop should always go on your finger first not from the dropper into your mouth as you could always land up taking more than you should. Anyways Wayne should know this by now. We said our goodnights and I climbed into bed with Jude and Wayne into our bed around 10pm.
11:30pm I hear a very strange sound coming from the passage. I truly thought it was a dream. I checked Jude he was fast asleep thank the lord, and put my head down. Then again a strange sound “Heeeeeeelllllllpppppppppp!”. Very weird but I’m the lightest sleeper ever so I jumped out of bed tiptoed out of Jude’s room, opened the door and there on the floor was Wayne who had leopard-crawled to Jude’s room to wake me up!!! WTF is this? “What is wrong?” I said. I started to panic. He was drenched from head to toe. I thought he had just showered in his clothes but it was sweat. He said to me, “we need an ambulance or someone to help, I think I’m dying”. Now this is a problem. Wayne is tough. It takes alot to even go to the GP. Thankfully he never gets sick!
I tried to lift him up but that was not happening. I was in a panic. I pulled this dead weight to our bedroom and was screaming at him telling him what a moron he was for taking too much oil and comforting him at the same time feeling anxious. Anyways I managed to get him back onto our bed and I called Hatzollah (Jewish ambulance service). It was a hard phone call to make. I was so embarrassed at the time but they said it’s common and definitely not their first time. They
came to the rescue as they always do and said he was completely dehydrated. He was on a drip for the night and had to stay over in hospital. He vomited for 24 hours and was a complete and utter mess.
All we wanted was a quiet peaceful night and some sleep! Turned out he had taken around 4mls of this stuff, not 1 little drop. Thankfully he has learnt his lesson and is very careful with our ‘stuff’ now. What we put ourselves through just for that one night sleep!
Holidays are tough. Weekends are tough. I won’t lie when I say I prefer routine for both Jude and I and I know Wayne feels the same way too. Before lockdown we had help every weekend so Wayne and I could go and spend some time together and just escape the madness for a few hours. I make it sound like we live in a war zone. We don’t but when you have a non verbal child and all they do is stim and make noises and it continues from the moment they wake up at the crack of dawn until they go to sleep, eventually you feel like your head is going to burst or you are going to snap.
Stimming refers to self - stimulating behaviours usually involving repetitive movements or sounds. Almost everyone engages in some form of self-stimming behaviours. You might bite your nails, twirl your hair around your fingers when you’re bored, nervous or need to relieve tension. Most people are not even aware that they are doing it and for most it’s a harmless behaviour, you are also able to recognise when and where it’s inappropriate. In people with Autism or on the spectrum stimming might be more obvious. For example it may present as full-body rocking back and forth or flapping of hands. The issue is that it can go on for long periods and most of these people are not aware - well they have less social awareness - that the behaviours are actually bugging and disrupting everyone around them.
Picture someone tapping their foot loudly next to you all day, or humming, or your electric fence, or house alarm, or an ambulance noise or police siren going off all day everyday on top of you and just never stopping. Well that’s what it feels like. It’s constant, it’s draining, it’s another level of frustration. Jude loves balls and another form of stimming for him is bouncing a ball or throwing it. He loves that feeling of the ball coming back to him. His ball skills are unreal and we have tried to redirect them so he is using those skills in an appropriate way not just chucking them but throwing it into the hoop or kicking into the goals. His eye-hand coordination is unbelievable. The bouncing of the ball is not a bad stim at all - it’s the humming and noises that come with it.
Getting back to holiday. So when Jude’s routine has changed and things are not normal in his eyes, the way in which he copes is babbling away, all day, from am to pm, non stop. It is exhausting mentally and emotionally for us and probably for him too. We do stick to the same place and have the same home which we go to and he is used to it and he has his things and we bring all his weighted blankets, his cushion, his toys, every ball under the sun and whatever else he needs to feel safe.
Holidays are insane, just so exhausting we don’t get to rest. It’s hard as we are in a complex and a communal pool. People are there to relax and it’s constant noise. It’s screaming and throwing itself all over the show when he’s hungry. He gets to the point when he realises he’s been playing for so long he’s starving and he freaks out. He’s not little anymore. It’s not ok seeing an eight-year old rolling around and screaming. So we then move to the beach which is fab and spacious and Jude is fearless. The sea is scary and rough and intimidating but not for Jude. The further out the better it is. I sit and watch as I’m no sea swimmer unless I’m floating in the Mauritius crystal clear waters and can see what is in front and underneath me. He comes to sit, eats something, rolls in the sand then runs back into the sea. So up one of us (Wayne) has to get again and this continues for around two hours. We often start at the beach then finish at the pool, it just depends on the mood of the day. A lot of the time we have to apologise as he will just go up to any arb person in the pool who is playing and throwing their kids because he also wants to be thrown into the air. Some are understanding and go with it, others find it weird, we just read the cues and go from there.
So holidays are definitely not holidays. They are a change of scenery and we do love it and love the sea air. It has a way of calming us a little and just being away from the everyday rush and madness even though it still is both in so many ways! We Just came back from an April break it is now 2023 and we had a good time. Wayne being the amazing dad he is took Jude away a week earlier as he had quite a bit of work to get done in KZN. So off he schlepped Jude with him as Taye was still at school. It was hard having separate Pesachs for our family but we did what works best for us and that was Jude being by the sea and Taye having a Seder (ritual feast at the beginning of the jewish holiday of passover). Besides being hungry all the time and a lot of tears Jude behaved and loved swimming in the sea and getting dunked and smashed by the waves he was in his element. Wayne was a rockstar dad and I stayed far away from seeing that, I am a nervous wreck at the best of times near the sea and I just couldn’t watch it it was frightening. Jude was living his best life!!
January 2021
In December we went to our paediatric neurologist for our checkup. We try to go at the beginning, middle and end of the year and of course we call her when we need to in the meantime if need be. I had been told by Jude’s principal at school at our last feedback that he is so impulsive, he cannot sit still for more than a minute and this is hard and it’s putting strain on his ability to do more in the classroom. So together, we decided to go the Ritalin route. I was never really against it and know from being a teacher if it works it works and can do wonders for a child. We started him on it and started with the 10 mg dose twice a day once as you wake up and then again they give him the second pill mid morning.
I was quite nervous and I know once you start on these pills you never really come off them. Jude also takes Risperdal at night which had increased his appetite so we were told his appetite might decrease which I wasn’t unhappy about to be honest. He was eating us out of house and home! So we started him on the Ritalin and all seemed quite good. There was not so much hyperactivity, jumping up and down or screaming for food. Things seemed quite cool and calm and peaceful. Wow, this stuff might be working. Besides being quiet Jude lost his appetite.
I was told he probably wouldn’t want to eat much. I was like “ya right” not my child. Jude’s teacher at school even came running to my car one afternoon and said “Ma’am I think Jude is really not well but he has no temperature and he is not crying”. So I said, “ then what is the matter?”. She said to me, he would not eat anything today at school, I am so worried about him. Previously, Jude was eating everything on site. I would have to buy more snacks and leave them in the principal’s office because he was so hungry and ran out of food. By 11am he had eaten up his lunch and snacks for the day. So of course then I was like OMG from overeating to now starving. Being that Jewish mom, I checked in again with the doctor to make sure that it is normal behaviour. I remember her saying to me “don’t forget by around 4pm when the meds start wearing off, have food ready and waiting for Jude as he is going to be starving and need to eat immediately. He will not understand what hunger pain is and not know to ask on his iPad what he wants. So when he starts going crazy or having a meltdown the reason is he is starving!”
What we didn’t realise was that Jude would swap one behaviour for another, so instead of eating all the time Jude now constantly needed a wee. So just about every 30 seconds to every minute, sometimes 2 minutes on a good day he weed! It did not matter where we were, what we were doing, when he needed to wee he needed it. As soon as the tablet was given in the morning, not even 20 minutes later it began. He would go make wee number one, then a few seconds later another one, and this carried on and on and on.
We have a beautiful flat in Umhlanga which we love and it’s our home away from home. The kids are comfortable there, Jude is so happy, when he arrives he knows he has his own space and room and everything that he needs. So in December 2021 we decided to let D (our helper) have a long well deserved break and boy she needed one. She was exhausted. She is with the kids all the time. Jude is hectic as you all know and so we thought, he has grown up it will be ok to go away on our own. IT WAS NOT OK AT ALL. We were going to possibly drive down to Durban for the holiday but that changed fast when this whole behaviour started so we booked tickets and I flew with the boys and Wayne drove down with all our luggage. I went for around three urine tests. All were clear. When I called our doctor she said this is not a usual side effect and we need to keep an eye on him or we would have to make a change in the new year.
The aeroplane ride down was not too bad. He only went four times in the 45 minute flight. I think people must have thought these people are definitely sick. I did explain to the air hostesses what was going on but we had such turbulence on the way down that Jude vomited which he never had done. I was saying the Shema( Jewish prayer) over and over again to please not let us die, so between the weeing, the vomiting and the turbulence, the start to our holiday was unbelievable.
We got settled and holidays began, things were quieter and calmer than the previous year. He wasn’t screaming and humming and making noises and disturbing the peace of the complex but he was weeing all the time every minute. On the beach, at the pool, the shops, you name it. It became so difficult to run up to the flat that eventually I just let him hide behind the umbrella on the beach and do his thing, I let him go on the grass in the plants, in the pool, wherever. But even though he did, he still felt like he needed to go to the house himself and go to the toilet somehow that made him feel better so we left it open for him to come and go as he pleased.
There were days where it was just easier to be in the flat all day or most part of it so that’s what we did. Wayne and I would take turns. I would feel so down a lot of the time, I was actually happy to stay home with him. We had amazing friends there with us whose kids kept Taye busy which was just the best thing ever. What an exhausting few weeks. I sound like a real brat I know, but wow I was tired.
Holidays without help are a thing of the past. Wayne, Taye and I need to try and do some “normal” stuff together like outings, go for meals in peace without getting up every two minutes, go to braais when invited without having that guilt on our heads. We need to start living a little more. We have also come to realise this is only getting tougher, I thought maybe easier as he gets older but as he does get older more problems arise and more issues come out. The saying “bigger kids, bigger problems” obviously is true.
December 2022
We have just had the most magical December/January family holiday in Mauritius and Umhlanga this year. Judes medication was sorted out beforehand. He was so beautifully behaved and we actually bonded and had the best time together!
of tablets and supplements. I feel we have a great team, GP, neurologists, geneticists, therapists, psychiatrist we have a whole bunch of brilliance in one.
I was so nervous to go away as 2022 was one of the hardest years behaviourally and I was very close to breaking point. He surprised us all and we loved every second with him! When Jude is happy the Miller house is too.
We went to see an amazing Geneticist before we went away. She read into all our previous tests, DNA, OAT(organic acid test) urine, new and old blood tests. She looks deep into his medical history and results and tells us what Jude is lacking, what he needs more of and makes up protein powder with a mix of some of the vitamins and minerals. Other stuff is given in the form
The best dad, best husband, works so hard, will fight for his family until he gets what he wants. Remember when they told us we would have to wait around 4 months to get into a doctor they said could help us and Wayne called them every day for three weeks until the secretary could not take it anymore?
He is the most loving, kind, warm, sensitive, passionate person. When he loves you, he loves with his whole heart and will do absolutely anything for you, but if you hurt him or are not loyal he will cut you out forever. He is the hardest worker I know, fights for what he believes in, loves his job and is so good at it. He is a huge Liverpool fan and had such hopes for him and Jude to play soccer together from the day he found out he was having a little boy. He got matching soccer kits and was so looking forward to sharing that dream with his boy.
Wayne spends hours playing with Jude, they have their own special games, most of them are just hiding under blankets or lots of cushions. This could be for hours at a time. Wayne has the patience for this, not me. By the time the evening has come I’m irritable, tired and done! Wayne is also much better and calmer at putting Jude to bed. Not sure what he does but it takes him around 15 minutes on a good day, half hour on a bad one, and me much longer. I think Jude can just sense my exhaustion and mood at the end of every day.
Thank Goodness he has now learned to put himself to bed and that gives us some time together in the evenings. Wayne is my calming person, he takes over and settles things when I have just had enough. Wayne can also lose his cool but takes alot for him to do so and at times he really finds it hard with Jude especially when Jude is having a “bad” day, screaming, or making lots of noises, or just very loud. It goes right through us and it’s just too overwhelming and gets us both uptight.
Jude makes a very, very loud screaming noise if someone or something bothers him and Taye absolutely hates this. It scares him, he has to block his ears, he cries and screams and the more he screams the louder Jude gets and then the whole house is either crying or gone a bit cuckoo. My dad always said to Wayne when we got married “happy wife, happy life, don’t ever forget that.” For us, it’s happy kids, happy life. When Jude is happy and content and having a good day so are we all, if he is not, it upsets the entire household, and most of the time we don’t know what the cause is.
Wayne is an only child, he is a son in a million and looks after his mom and has for years. His mom brought him up all alone and wow she did the most amazing job. Not sure how she did it, full time job and all but she did and passed with flying colours! My mom in law is the most amazing granny to my boys and there is nothing she wouldn’t do for any of her boys and for me and we are so very lucky!
Wayne’s father passed away many years ago. He lived in CT and unfortunately I never met him. Wayne tells me how much I would have loved him. I see a lot of Wayne in his late Dad Ashley and Jude second name is Ashton which we named after him. Taye is the splitting image of Wayne too. We truly have a beautiful unique love for one another, we just get each other, we allow each other time and space when needed. We know when the other has had it. We love spending time together, we love the same music - well most of it .That heavy rap I can do without! We love tv, eating out and love our family time and being home together. We really are content and we work.
Wayne always asks me why I constantly talk about Jude? I’m sure all the moms would agree with me, but what’s the first and second question asked when speaking and meeting someone for the first time? “Oh wow your kids are so cute, how old are they”? and the second one which I always say in my head “please don’t ask it please don’t ask it.”
“What school do they attend?”
And then it comes. Oh wow I’ve never heard of this place or where is it…
And that’s how my story always comes out. Well, he’s at a special needs school...
Men “what do you do?”
I think the last question that’s ever asked by one male to another is do you have kids.
Yesterday was the best day of my life… Imagine knowing that TODAY, an ordinary day, is the best day you’ll have for the rest of your life!!?
We will get into that, but allow me to briefly take you into my childhood. I grew up in a middleclass family. Now a middle-class family in South Africa, is probably better than most middle class families throughout the world, or certainly up there. Due to the abhorrent Apartheid regime we grew up in, “middle class South Africa’’ comes with a home, generally big enough that every member of the family has their own bedroom, a swimming pool, either your own, or one of the complex of townhouses you live in, you have a maid, or domestic worker as it is politically correct to say, who does your ironing, cleaning, making of the beds and even cooking for you. In the “old days” they stayed in what was called ‘servants quarters’. Imagine that?!!!! It’s pretty up there with first class luxury throughout the rest of the world.
I come from a broken home, where my mother and father were very much estranged. My mother is a tough, complicated woman, who suffers with many neuroses, and debilitating OCD (Obsessive compulsive disorder). It’s gotten worse as the years have gone on. In those early days she was a successful entrepreneur, who mainly ran a thriving recruitment company and did well. She wasn’t home much as she worked a fortune, so I grew up and spent a lot of time with my schoolmates and my mates who lived in the area. I am an only child and didn’t have siblings to interact with. I never had a family life, a family unit, it was just me and my mom, and some first cousins who we saw fairly regularly.
My dad was gay. ‘Coming out’ in the early 80’s couldn’t have been easy, but from what I can remember he was fairly comfortable with it and didn’t shy away from it. He was gay but you wouldn’t immediately know, as he wasn’t a queen, or at least not around me. He lived in Cape Town and I saw him a few times throughout the year and maybe spoke once a week by telephone. I lived with my mother in Johannesburg which is a few hundred kilometres away. Whenever I was with my dad, I enjoyed the time we spent together. He was quite strict. He would make me stand every time an adult walked into the room, and would pull out a chair for a lady - that sort of thing. I guess trying to instil good manners. We would always visit family members, he was excellent with that. We would be forever visiting this aunt and that cousin. He had a large family and always made time for them. I guess looking back he was probably a proud dad, I gather, growing up and being gay he never imagined he would have a son. I suppose he used to show me off to a
degree, which looking back now, I understand.
My childhood was a dichotomy of relative ease and immense struggle. The reason I explain the above about my childhood is to illustrate just what a complex life it was to try and navigate through. I had a life where my mother sacrificed everything to give me a good life. The good life was to go to a TOP private school, and interact with some of the country’s top and wealthy individuals, yet it was extremely difficult growing up in that world, and knowing you didn’t really fit in. We had some years where we had no financial issues, or at least they weren’t apparent to me, and some years where we barely scraped by. I remember one such instance where my mother and I had to lay on the floor in the dark under the bed, while the sheriff came to confiscate goods as my mom hadn’t paid a debt because she was always trying to survive.
My mother ran into such debt trying to give us a better life, that by 18 years old, I had applied to the courts to be an emancipated minor and could sign and open accounts for myself to try and shield the burden for her. I bought my first home at 18 years old as I was considered a ‘major’ and was working for Coca Cola who had just come back into the country and my salary was good enough for me to get a bond or mortgage. I even took on some debt for her for some or other business idea which never took off and it took me years to pay off that debt! The day I started working at 18 as a waiter was the day I started to provide for my mother. Even as a waiter when I would earn R100 a night, it would all go to her, every single last Rand.
Through the years, my mom and dad would always fight, I remember my mom always telling how wealthy my father was and how it used to frustrate her that he never paid more maintenance, that was the constant fight between them. My father came from a prominent and wealthy family in Cape Town. His grandfather – Benny Gillis - was the mayor of a small town called Oudtshoorn, and was a tobacco and ostrich farmer. He moved away with his wife and settled in Cape Town. I remember visiting their home in Camps Bay and they had butlers who wore white gloves and they rang a bell whenever they wanted something. Such a contrast to the life I lived with my mom in Johannesburg!
I felt I was fairly popular at school. I suppose I was interesting to my school friends, as I was a different guy - I had parents that didn’t live together. I hit a growth spurt early on and at 14 I was the same height I am now. Basically I went from being the tallest kid in my grade to fairly average height once I finished, this together with the fact that I didn’t want people to tease me or talk behind my back that I had a gay father, I was somewhat of a bully. I guess I put on this bravado and would tell anyone that my dad was gay, in order to take away the stigma. With my relative ‘size’ and my confidence I felt that if everyone knew and that I made a joke about it, no one would dare tease me. It was my way of dealing with it.
To this day, it still haunts me the way I treated some kids. It didn’t matter to me if they were older or younger, I would ALWAYS stand up for me or a friend and would never back down from a fight. This gave me the reputation of a kid not to mess with, but if I could take it back, I probably would. I had these two completely separate personalities, almost two lives. My school life where some would say the class clown, class bully, the guy that would infuriate some teachers, I would always be in trouble with teachers, and yet sometimes would be so kind to them that they loved me.
I would carry a teachers’ bag when I saw her struggling and no one could see - then would put bricks in it if it made the other kids laugh, a complete separate world. For a large part of highschool I dated a girl who never knew that side of me, the naughty, bully side, when I was with her I was the perfect gentleman, if she had seen that side of me she wouldn’t have dated me. As I said above I was relatively popular, part of my personality is one of immense loyalty, it’s something that is indescribable if you don’t know it or feel it. I was so loyal to who I thought were my friends, that I was ambivalent and nearly rude to kids that I didn’t feel were my friends. Again, always two sides to me.
To my friends I was the trusting loyal friend but to someone that wasn’t my friend, I imagine I was a terrible person. I always preferred the Wayne that dated the girl in school, the guy I was when I was with her - that was the real me. The tough, naughty, loud mouthed guy was never really me, it never sat quite right. Towards the end of highschool the kids that I was friendly with and to whom I was so loyal started to move away from me. Who could blame them? Eventually the person I was got tiresome and I wasn’t someone you wanted to hang around with. Luckily I always had the friends that lived in my neighbourhood. They too never saw the ‘other Wayne’ and we’re still best friends to this day - that’s close on 40 years as best friends.
I’ve always been attracted to a ‘type’ of girl. I’m sure some psychologists could tell me exactly why. I’ve never bothered to ask. That type is generally blonde, petite and most importantly the “good girl” the “sweet girl” the kind of girl that is homely. My wife, Jacqui is exactly this. She is classy, caring, honest and absolutely beautiful. With the most beautiful, captivating, blue eyes you have ever seen, people often stop her to look into them. I remember meeting her and thinking she is really pretty. That was my initial thought. We hung out as friends for a little bit, but I soon realised that she had all the qualities I was attracted to.
By the time I realised Jacqui was for me, nothing or no one else really mattered, she was the one I was going to spend the rest of my life with. We have been married now for nearly 14 years, and I honestly and sincerely mean this, I couldn’t be happier or luckier. Many of the women I know change in some way after kids, who can blame them, you have a human that lives inside you and for whom you are responsible for the rest of your life. Jacqui has remained true and hasn’t changed who she is. I couldn’t imagine my life without her. Without Jacqui there is no Wayne, she makes me want to be a better person and I dedicate my absolute everything to her. NOT because I am a love struck teenager, because that is not the relationship we have, but because I love her with every fibre of my being. I would die for her without even blinking. G-d gave me this blessing and I reward her daily.
The day we were married was the best day of my life. I remember everything of that day like it was yesterday. One of my two wedding songs for the day was a song by Savage garden “I knew I loved you before I met you” which still plays true. One of the verses is “I think I dreamed you into life”. I always always knew the type of girl I would end up with.
Being an only child and not having any siblings, I always wanted to have 2 boys minimum. Two sons and I wanted them to be close in age so that they would be best friends for life. On the 22nd Of January 2013, Jude Ashton Miller came into our lives. Many of my mates who I have chatted to over the years, have varying degrees of when they loved their kids, and when they fell in love. Some say after they speak and can have a conversation with them, some say when they’re old enough to have some sort of relationship with, and some like me, fall in love immediately. None of these scenarios are right or wrong. I fell so hard, so deep and so much the minute I held my boy in my arms, something like I have never experienced. For me it was like a punch right in the gut, an all consuming and overpowering all inescapable love. When he was a baby, I would try breathing his air, just to be a part of him. I loved this little kid so damn much.
When I met Jacqui I was not fully over my ex, who had not been Jewish. – I thought I would try start a fling with Jacqui, get my mind off of Caroline and start dating again. I Thought Jacqui would be a nice distraction. A beautiful, kind Jewish girl, that was more my type. I actually tried to hook up with her early into our friendship and luckily she wasn’t having it. As I said, a good, clean, caring girl. JUST my type.
Jude by all accounts was a difficult child. He has always battled to sleep, even to this day he doesn’t sleep well. When he was born and during those first few months, we thought he was just a bad sleeper. He would wake up at around 4:00 am every morning and he and I would lie together on the couch and ‘talk’ for hours before we had to start our day. I would tell him exactly what I wanted for him, what grades, what football team he would support, when he should get married, what degree he should study, how he must find a woman just like his mother, I had everything all planned out. But as the saying goes, life never goes according to plan.
At the time of writing this, Jude is just about 10, we haven’t spoken to one another for what feels like an eternity, but is probably the greater part of 8 years, when he contracted a terrible virus and it brought on what we think is called Apraxia. He is nonverbal and his life will forever be a challenge.
I choose to look at his challenge as a blessing and I thank G-d that he gave me this blessing. I think relationships change over years they have to, I imagine even a parent and child’s relationship changes throughout the years. As kids develop as kids, get older your dreams for them can change as they get stronger in one thing or another, and with that so can your relationship, your love of course shouldn’t change but your relationship surely will. My love and relationship with Jude hasn’t changed one iota, to me, we have the same relationship as when he was born, he hasn’t changed one bit. We still cuddle, I still get to smooch him, whenever I want, I still even help him get dressed and I am ok with it. Our love is based on nothing more or nothing less than pure and clean love!!!
Do I wish he could talk back to me, challenge me, tell me his thoughts? Absolutely, for now he can’t. For now I continue to do my best for him and live in the hope he gets to say a speech to me at my 80th.
So why was yesterday the best day of my life? It was the day before I knew Jude was sick and would forever struggle. It was an ordinary Saturday, we had a family friend’s son’s Barmitzvah, I took Jude with me to the service. Jude couldn’t sit still in Shul, so I walked him around the shul grounds, my brother-in-law and very close friend, Jarred brought his daughter who is 19 days younger than Jude and Jude’s first cousin, we played outside on the grounds and Jarred was speaking to Gia, my niece and she was responding. Jude was running around on his toes, flapping his hands and not really listening to me. I had suspected something was wrong since he fell ill with the aforementioned Kawasaki disease.
When it was time to go, I was dropping Jude at home and also took a friend’s daughter Jade home, she was a month older than Jude. There was me and 3 kids in the car, all of the same age. I found myself conversing with the 2 girls coherently but Jude was nowhere, he seemed like his mind was floating above him and his body was just going through the motions. I KNEW something was wrong. I couldn’t breathe. I wanted to vomit. I needed the toilet. I was crying. I was in a panic.
I drove home, Jacqui was out attending to her dying mother and I started with Dr Google. I typed in his new behavioural mannerisms, and everything that was coming out of the computer screen, felt like a punch from Roy Jones Jnr - my all time favourite boxer. I knew Jude was ill, I knew he would never be the same, I knew my life had forever changed.
I think about that day often, I hate that day, I despise it, I wish I’d never had that day, but life as we know, doesn’t happen like that. So that is why an ordinary Friday - the day before - where I can’t remember a single thing that happened other than I awoke, brushed my teeth, went to work, went home, and went to sleep, was the absolute BEST day of my life, the day before I absolutely knew my Judey would forever be in an uphill battle…
People don’t always talk about siblings, the ones who are asked to be strong, adapt to the unexpected, and grow up a little bit faster. The ones who learn to love a little differently, listen a little more carefully, and advocate for themselves a little more loudly. The ones who learn resilience. This chapter is for Taye.
People ask us “Where did you come up with such a name?” Well the meaning is “one who has been seen” but that’s not the reason. Not sure if anyone knows the extremely good looking actor “Taye Diggs”? Ok that’s not the reason either. We actually wanted to call him Jaye. We wanted a 4 letter name like Jude, with a J. But we were out one night with my sister and brother in law celebrating my sister’s birthday and of course we shared our choice of name with them. Well that’s what friends/sisters do, and they were like “NO, it just doesn’t sound right! You can’t do it, it does not work, but instead of Jaye what about Taye? We love it, it’s also four letters.” We were sold - Taye it was.
Taye is the kindest, most nurturing sensitive little soul with a heart of gold. He has a very difficult time with his brother and I’ve seen that as he’s getting older the harder it gets. All he wants to do is play, run around playing imaginative games, build, have someone to watch movies with. He loves life and small things make him happy, and also the smallest of things can set him off too.
Taye Reece is actually our “first” second born child. He is kind, compassionate, caring, highly sensitive, smart like his dad, handsome and a mini version of Wayne. He loves to dance and sing, a little 7 year old boy who has had to grow up pretty quickly. I often think that it is Taye who has taken the most strain. He loves Jude so much, but also finds it tough having a brother who can’t talk and interact properly with him. I feel that he really lacks that type of sibling interaction.
It was of course easier when he was younger, but as he gets older more questions are asked and it is not always very easy for him to understand.
Why do his friends have siblings that talk?
Why do his friends have siblings who play?
Why can Jude do certain things and I can’t?
It is very challenging for Wayne and myself – life has revolved around Jude. He throws things, shouts, jumps out of windows, jumps into the pool, cries when we don’t sit with him. Most times, it’s just too exhausting and so we give in. Naturally, Taye is also needy and also wants attention.
I know that I should be more fun, more energetic, happy to play superhero games and hide and seek but I’m just so tired and don’t feel like it and then I feel guilty.
Being a sibling of a special needs child, Taye has had to deal with very big emotions every single day. A special needs sibling needs someone to focus on them as well, try to help them forget all the stresses and frustration. To remind them that they are so important and indeed SPECIAL. It took me a bit of time to realise that Taye needed someone to talk to and some extra attention. A pair of safe ears, a person to vent to, a person who can try and explain the various sets of emotions – anger, love, envy, sadness and so on. A lunch date with mommy is sometimes all that is needed, a trip to the shops with daddy perhaps – whatever it is, it’s just time away from the chaos and stress.
It’s such a fine line, as Taye does not always show his emotions in a constructive way. Which is completely age appropriate and understandable. A laugh could suddenly turn into anger, tears or slamming of doors. Others may judge and perhaps even ‘suggest’ he needs discipline. But people can’t judge until they are in it. From my experience, I believe that siblings of special needs children actually need – timeout with positive reinforcement, so it is not a punishment. It is exactly as it’s called – time out from ‘reality’.
One night as we were lying in bed we discussed the day as we always do. It’s always a high and a low of the day. That one day, Taye said the one thing that made him happy that day: “I had yummy ice cream” (anything with sugar) and the low of the day: Taye said that the one thing he felt sad about, “he wanted to be just like Jude, then he wouldn’t get in trouble. Whew! That really hit me hard and actually broke my heart. It was a wake up call and made me think about how I needed to shift things and make some changes in my life and especially at home. So Taye, now you have my full attention and I have woken up and realised that special-needs siblings can feel like their needs are always taking a back seat to their sibling’s needs.
Try to reserve part of your day for just your typical child or children. Maybe it’s at bed time, or when you’re washing dishes together or when you can get to watch a movie or take them for an ice cream. To recognise and make it clear- “I’m proud of you.” We often celebrate the accomplishments of our kids with disabilities because they are fewer and far between. But our typical kids need to know we’re proud of their accomplishments too. And that we aren’t only proud of their actions, but also their attitude. We’re excited when they win the trophy at school for being kind and helpful, and we’re also proud when they make friends with the new kid at school or help with some stuff around the house.
“Why did G-d give me a brother who can’t talk?” Taye asks me often. My first answer was “I don’t know.” Together we came up with lots of reasons, like how it made us more compassionate and maybe because G-d wants us to show the world how to be kinder? But “I don’t know” is what I needed to tell Taye and to reassure him that he and I didn’t have to figure it all out.
“Let’s make a plan together.” This is important to say when you find yourself saying, “Not right now” too often. The answer may be “Not right now,” but there will be a time you can do what your typical child is asking you to do. Make a plan together to do it when it’s best for all of you. “I understand how you feel.” When those negative feelings arise, like embarrassment or frustration, I need him to know those feelings are ok to have. We as parents will never shame him for how he felt. We show empathy and understanding, which we ourselves had to learn.
“I’m sorry.” I’m sorry we aren’t living a plan A life (and the truth is, no one is). I’m sorry your brother’s limitations limit you too. I’m sorry your brother was having a hard morning and we’re running late. We can help our kids focus on the positive, but they also need to know it’s ok to not feel ok. To let them know how grateful we are for them, say “Thank you.” Just to know that you are seen and appreciated also. Find something each day you can say thank you for, for help around the house, for extra patience, for being ok with leaving early. If you look, you may find lots of things you can say thank you for! (And you might even get a few thank yous in return!)
People don’t always talk about siblings, the ones who are asked to be strong, adapt to the unexpected, and grow up a little bit faster. The ones who learn to love a little differently, listen a little more carefully, and advocate for themselves a little more loudly. The ones who learn resilience.
It’s such a hard balance. Siblings learn resilience and tough life lessons very early on, but I believe they come out stronger because of it. If you want to know how to treat a child with special needs, just check with any siblings, they know the way. Taye is super protective of Jude and will immediately stop anyone for reprimanding him or doing anything that he does not approve of. He has had to learn very quickly how to step up, show up and be the “role model”. I feel sad for him and want him to know that I don’t for one second know the difficulty he goes through on a daily basis, how hard it is not having that brotherly bond and someone at home to play all his fun games with. These siblings develop some very valuable characteristics, endurance, strength, resilience, empathy , kindness, and generosity. These precious siblings become so much more than just that, they become a voice , an advocate, caretaker, a friend and a helper.
To make them aware that you feel the same as them and that none of us have the answers.
If you are the parent to a special needs or medically fragile child you are well aware of the ways in which the extra needs of the one child stretches into every area of your life affecting even the
smallest details of your family. Undoubtedly, the siblings of these extra-special kiddos deserve a gold medal. Their life often changes in such a drastic way due to the needs of their sibling(s). And it’s not that we feel sorry for them necessarily, but we as parents understand the impact that this journey can have.
It’s always about Jude. Taye please change the channel for Jude he’s crying. Please can we eat first then bath because Jude is screaming and starving and I can’t take it. It’s always about Jude. Our world revolves around him. If he’s already in a mood or having a bad moment the timer won’t help we then have to try to ignore him until he eventually stops.
What I realised in lockdown is that Taye is just like a first child. I’m still learning how to cope and deal with him and his changes but he really is one beautiful kid with a heart of gold and we are lucky!
Taye I want you to know that every single day, no matter how unpredictable, I still see you and your amazing self.
It is so important to have family and friends for support and comfort in both times of joy and distress. Studies have shown that having supportive relationships is a strong protective factor against mental illnesses and helps to increase our mental well-being. It is also hard for people to be here for you as you don’t know how to cope yourself. Just be honest, let people in, even for a chat, a coffee and a vent. I’m blessed with a village. I have had some amazing mommies, mentors and people who have guided me along our journey.
Sometimes, we don’t always realise how much love and support we have around us. I see it and I appreciate it. At times I still feel all alone on this journey but I am blessed to have so many people to count on.
TARYN
My older sis by two years, my number one forever person and my go to for everything. She’s been a mother figure to me for many years. She is the most organised human on this earth. The most humble, charitable, giving person. We were pregnant with our firsts, 3 weeks apart. Jude was born 22 January and Gia 10th of February. We spent the first few months together. It was really amazing and the kids loved each other.
We did everything together at the beginning and had each other to chat to all those sleep deprived hours. Both being first time mommies, we knew nothing, but we had each other as our mom wasn’t “around”. At times, it’s been difficult that our kids were born a few weeks apart. Both were healthy and happy. Jude spoke before my niece, walked before her and now she is years and miles ahead of him.
You can’t compare - they are two totally different little people but sometimes it’s so hard, when milestones start. Like getting a school uniform, Starting big school, seeing all the “normal” stuff a Typical child does. But there is no jealousy. I love my niece and nephew like my own. It’s such a deep love but do I wish it was Jude sometimes? Yes!
My relationship with my sister is unique. We have a love like no other, we never ever fight or argue, we just get each other. She’s that person I call immediately when something is wrong, if something happens, or just because someone just irritated you and you need to bitch and moan, yes she’s that person, and have I mentioned her closet? Taryn has helped us so much with Jude in
terms of all our admin stuff, she looks into new ideas and she is in charge of our “Jude file” we call her our “case manager.” She has all documents, paperwork, medications on file etc and helps as much as she can which we are so grateful for. Sometimes when you are in so deep into you cant see much and she truly is the Yin to my Yang.
Taryn and her beautiful family left to go and live overseas on the 24th of October 2022. This was one of my hardest days and challenges I have ever had to face, and boy have I had my fair share. I miss her and pine to hug her. We speak at odd hours a few times a day. It’s not good enough but we are blessed we can.
I have the most amazing bond with my brother. He has the most magnificent family who I adore and we all get on so well. We are so blessed that all our spouses and the three of us are extremely close. We have a very unique and special relationship. It’s devastating that my sister and my brother both live overseas. My baby Bro has grown up so fast, he has lived in Israel for the past 11 years. He went to the Army in Israel, he studied there, and has made a beautiful life for his family. I am so proud and I look up to him.
It doesn’t get more raw and real than this. My tribe.
My strength when I’ve been too weak. My sunshine on those cloudy days.
My smile to hide my pain
Best friends are very special people in your life. They are the first people you think about when you make plans. They are the first people you go to when you need someone to talk to. You will phone them up just to talk about nothing or the most important things in your life. When you are sad, they will try their hardest to cheer you up. They give the best hugs in the world! They are the shoulder to cry on because you know that they truly care about you. In most cases, they would take a bullet for you, because it would be too painful to watch you get hurt.
Wild nights that turned into early mornings
Laughing until we cry.
Moments of - WTF
A good friend will bail you out of jail. A true friend will be sitting right next to you saying: “Man, that was fun.”
We have shared in SO MUCH together, it’s difficult for me to try and put it all into one chapter.
Young, innocent and naïve heart breaks and tears.
Stalking stints – how did we ever think those guys were the one?
Growing up and realising that shit got real.
Marriage
Divorce
Death
Birth of our children
Celebrating in every single milestone
Trust, Loyalty, Unconditional love no matter what time of day or night
There are those friendships that pass by like ships in the night, who meet for a moment and then sail out of sight with never a backwards glance of regret. Then there are those friendships who sail together through quiet waters and stormy weather helping each other through joy and through strife. Those are the kind of friendships that give meaning to life.
My Sisterhood.. The wind beneath my wings
It is quite hard not to be sometimes. Our most recent holidays were rough. We added medication to try to keep him more focused at school and to suppress his appetite once again and it’s been a shocker. He is making sounds all the time and noises it’s really hard not to stare at him and to act normal – even we as his family feel uncomfortable and want to run away. He can’t help himself though. Our psychiatrist did say that he might get some tics from them. It’s been 10 days of absolute hell on earth and not for another day can we continue. She told us to persevere until the end of the month, but as of today I have taken him off the meds and it will probably take a few days to get out of his system. It’s relentless, it’s exhausting for both him and us. From telling him to shut up then hugging him to say it will be alright, to all of us putting earphones into our ears to help us try to cancel out the noises. Jude usually makes sounds here and there, but they are “normal” to us. This is NON-STOP.
Interacting with special needs kids can be a daunting task. It’s totally natural to feel nervous and unsure about how to approach them or how to behave around them. It’s so important to remember that even though they may act differently or sometimes look a little different they are human just like you and I and they should be treated with kindness and respect. Speak to them in a calm and friendly tone and avoid talking down to them or using baby talk. And for goodness sake don’t shout at Jude he’s got 100% hearing and is not deaf!!!!
Special needs kids might also take longer to process information or respond to questions, and in Jude case might not be able to respond verbally. So don’t ask him questions like, “how was your day?” Rather say, “was it a fun day?” He can then nod, or he can say mmm. Or ask if it was a thumbs up day or thumbs down kind of day?
Focussing on their abilities and strengths instead of focusing on their disabilities could encourage them to express themselves. Jude’s hand-eye coordination is really brilliant and he is amazing with ball skills. So one way to get his attention is to throw a ball to him or play with a ball yourself which will spark his interest. Most parents and caregivers are so happy to share information and provide support and guidance about how to interact – so go ahead and ask. I personally would love people to take an interest or engage more with Jude.
One of the easiest ways to intentionally practise positive non-verbal communication is to improve eye contact. I find that I need to speak at Jude’s level or else he does not really listen and will run away from me. I use a lot of gestures and make him look at me when I’m talking to him. I am constantly repeating myself, and I use whatever I can – pointing to things, making gestures, writing, drawing, humming or singing. And don’t forget to listen– good communication is as much about listening, as it is talking.
Try to treat special needs kids as your equals. If a person with a disability doesn’t understand you, try to accommodate them instead of giving up. Be mindful of your communication. Use simple language and be a little clearer and more direct. Talk to them in an age-appropriate way. It is a struggle and I still battle with Jude after all these years but the moment you let them in they will be able to feel it.
It’s very hard to not be weird around a non-verbal person and I have my moments where I still battle to understand what Jude wants and needs and what he’s trying to tell me.
When it comes to approaching someone with a disability, children may be better at it than their parents because they are less inhibited. Some adults, especially those without previous exposure to people with disabilities, may be more timid. They’re worried about appearing intrusive or insensitive and they may not know what to say or do.
South Africa is an extremely hard place to have a special needs child. There are no inclusion programs in our schools. You have your traditional schools, and your remedial ones, but none of them cater for special needs kids or children with disabilities - and certainly not for nonverbal kids. We are blessed to have a few schools to choose from but the issue is you are putting like with like. If special needs kids were included or able to play alongside your typical child, or included in a social class maybe for an hour a day or even brought into your typical schools on a weekly basis maybe both the special needs child and the typical child could both learn from this experience and each other?
We’re lucky in that Jude has never had issues with touch and getting close physically to family and friends, in fact he likes a good hug and deep pressure and is happy to give a fist pump or a high five. Some kids struggle with sensory issues and personal space and boundaries so we have to respect it.
A disability is only one characteristic of a person. People have many facets, likes and dislikes, strengths and challenges. Some children can be born disabled or become disabled from an accident or illness. You can’t “catch” a disability from someone else. Just because someone has a physical disability (when a part or parts of the body do not work well) does not mean they necessarily have a cognitive (or thinking) disability. I know kids who can’t walk but boy can they talk. Jude can run and climb and has amazing hand-eye coordination but cannot talk. No two people are the same — some differences are just more noticeable. Jude is as handsome as ever and when you look at him you see this beautiful 10 year old boy. Only once you get talking to him and he “ignores” you or doesn’t look your way or a funny noise comes out his mouth would you know that something is up.
We have to try to create inclusive spaces as much as we can. Whether it’s in your workplace, community, or social circle - strive to create inclusive environments where everyone feels welcome and valued. This also benefits the family members of the special needs child. To be honest most of us are ‘weird’ and have our own quirks and ‘odd’ ways. I think feeling weird is more normal than we think these days. A huge part of the difference between ‘good weird’ and ‘bad weird’ is how warm and friendly other people think you are but it can be difficult to know how friendly you seem. Body language helps to let people know how you are feeling. I think we all feel weird and shy around people who are different. I know with Jude he couldn’t care less what you are feeling as his brain works differently to ours! So try to be yourself, smile and always, always be kind.
A lot has changed since I first started writing this book in lockdown. My Aunty Michelle (my dad’s sister) passed away in February 2021. My special grandmother Bobba Lola who was Michelle and my dad’s mom, passed away June 2021 at age 94. What a time. Such heartache and loss for us all. We were all an extremely close bunch.
In September 2022 my other Bobba (granny), my late mom’s mom passed away. She was my everything and we were extremely close. We spoke twice a day everyday. I did her shopping, took her to all her appointments, and ran there if anything was wrong. I saw her every week and so did my boys. They loved visiting her. During lockdown we would stand on the other side of her gate chatting, singing and dancing. In summer we got Bobba iced smoothies and in winter she liked biscuits and hot chocolate.
We moved schools. Taye started Grade 1! It freaks me out that my baby is not a baby any more! He had a great year. It wasn’t so easy moving from a small environment where he was so loved and known by everyone to becoming this little fish in a huge sea. He did have an amazing, nurturing, kind teacher which made it so much easier for us all.
I also decided to move Jude to a new school the day my sister emigrated. How is that for a tough day? The first bonus, it’s a two minute drive from home which helps Wayne and I immensely. Secondly there are amazing extra murals that are done during school hours which also helps as previously, he had to do them after hours and he was exhausted after a long day at school. His therapies are also done in-house. We used to have to go before and after school which was also stressful for us. This new school seems to offer so much for our special kids and a school is being built now for older kids in high school which is a struggle to find here in Johannesburg.
We are so limited in our country with regards to schools. There are no inclusive programs like overseas where kids with disabilities, kids who are non-verbal, kids who don’t fit in or who are not able to start at a typical school from when they are little. Our kids are not included in anything unfortunately but I have come to realise that sometimes, it’s probably better for them anyways.
Opportunities to thrive are not always distributed equally. Children with disabilities are likely to experience obstacles to the full and equal participation in our society that they deserve. But there are so many things that can be done to help children with disabilities thrive both at home and in the larger world outside their front door! Whether at home, at school, or in the community,
the environment can have a significant impact on the functioning and wellbeing of children with disabilities. Tailoring the environment to the child’s specific needs can dramatically increase the child’s overall quality of life! There’s so much more we can do.
People often ask me: how do you cope? I’m often told how strong I am. I’m not sure if it’s strength or if I’m sometimes just exhausted or numb. I have realised that you have to try and look at the positive side of the situation. This is what we have been given. Is it fair? Of course not. Some days are worse than others and some days are a little easier. But it is what it is. I have to just keep going! A very wise person said to me: “You’ll cope because you have to.” And that’s what anyone would do. Calling us ‘special’ or alluding to our great qualities makes us different, sets us apart, and we don’t want that at all.
For those folks parenting a special needs child, you are a hero. You may not leap buildings in a single bound or run faster than a speeding bullet but you are a superhero nonetheless. Everyday, you manage situations that a regular parent would think are impossible. You stretch tight muscles, remember pills, inject and infuse medicine. You hold hysterical children during horrendous medical procedures. You deal with tantrums and meltdowns. And most often manage not to have a tantrum or melt down yourself. You encourage your child to do things doctors told you they would never do but you never gave up hope. You are a therapist, nurse, doctor, friend and confidante. You are no regular parent. You are running a marathon. If you want to stay in the race, you eat, drink and even pee while running. But our marathon will go on for the foreseeable future and beyond. So remember, you don’t need to win, just make it to the end. The guy who comes in last place in the marathon, he took breaks, he stood and drank some water, grabbed a quick bite and then got back on the road. Give yourself those moments—however brief—that are for yourself. Goodness, you might even get to pee in peace every now and then.
Being a parent of a child with a disability carries with it unique responsibilities, stressors, and rewards. It requires an extra dose of emotional resilience, perseverance, and resourcefulness. Powered by the same (or an even stronger) drive to nurture, protect, and empower their children as parents of kids perceived as a Typically abled. Find a therapist or life coach who can help you work through specific challenges and issues; soothe, manage, and reduce your fears and anxieties and provide a space for you to grieve, rejoice, or process anger.
with Jude as long as he’s in his routine and things are the same for him he will manage without us.
And remember you are not alone. There may not be anyone else with the same set of symptoms as your child but there are people with similar challenges. Find those people. I have never met anyone with all of these same challenges as Jude but I have a strong network within each separate diagnosis. We have made some friends along the way - not many though - and I hope we’ve provided them with some useful information and helpful tips and advice. I sometimes have to pop onto one of my Facebook or whatsapp groups and I’m immediately reminded, I’m not alone.
It’s difficult to say what thoughts go through my head on a daily basis. Sometimes I laugh, sometimes I cry and sometimes I’m just absolutely terrified of what the future has in store. I have to keep believing that G-d has a great plan and we need to keep believing and having faith in all that we are trying to do for our boy.
We don’t know what tomorrow has in store for any of us. I need to know that when we are not here one day that Jude is in the right hands, in the best safest place for him…. only time will tell and only G-d knows until then we keep doing our best, keep pushing him to his best…
Who knows what the future will bring, where we will land up. Will we ever find the reason why Jude lost his speech in the first place? So many unanswered questions. One thing I do know, we will never give up hope. There are days where I feel I could just run away, but that will never happen. We will continue to fight this fight. Our gloves are on and we are ready.
I remind myself everyday: What makes you different is what makes you beautiful.
If you struggle with speaking up for yourself or your child, you may want to focus some of your energies on learning how to be a more vocal and effective advocate. Try your best to have some guilt free time out , a manicure, coffee with someone or alone. If you can, the best thing is to get away - even to a hotel a few kms away just to binge watch your favourite series or sleep! Whatever you are comfortable with but try to do it with no guilt or as little as possible. I know
Jude. Our Judey boy, the one with a heart like no other, the one that has gone through so much in his 10 years. The one that smiles and is happy go-lucky and gets on with his day. He’s the kid who you can give a ball to and he’ll play for hours. He only knows good. In his world, evil and bad is when we don’t have his meals ready on time! He’s that kid who can play outdoors for hours, who stares at the trees and listens to the birds chirping away. He can swim for hours in the pool and the sea. He still watches Barney over and over again and copies the moves to a lot of his songs.
When you were born I prayed that you would come out healthy and my birth would all be good and it was.
Then I prayed for you to sleep and you sort of did.
Then I prayed for you to start talking and you did.
Then I prayed it wasn’t something serious when you got sick and that you were minimally affected.
I prayed that you would catch up to your peers.
I prayed you’d make a friend and get invited to a birthday party.
I prayed you’d learn to throw a ball (and wow you are amazing) and drink from a cup (you eventually did)
I prayed for words and that you’d learn to play and hopefully someday you’d acknowledge your brother.
And when it eventually got really hard and I could see that you were struggling greatly, I prayed for your peace.
I pray for guidance to unravel your mysteries.
I pray for patience too.
I pray you’ll be safe and that the people I trust you with will be kind to you. I pray for your happiness and your health and that we could find your joy.
Whatever that may be.
Now I am more thankful these days. I’m thankful you are such a happy kid.
I’m thankful you smile so much these days, I’m thankful you eat so well, thankful you love your brother and us all. I’m thankful your body is calm and this morning you said “school” so clearly when dad dropped you off. I’m thankful for you kid. And for the lessons you teach us.