Autism Parent’s Association - Malta
APA Newsletter May 2015
Inside this issue: Message from Omar!
Up Coming Events
Events So far
Autism and Preparing for Summer
A real life story from a sibling of a person with Aspergers
Summer Playdates for Kids with Social Issues
Book Review “Bright Not Broken: Gifted Kids, ADHD and Autism”.
Message from Omar! Dear Parents, We truly hope you are well. Another exciting issue of our newsletter awaits you, since a lot has happened since we sent out the previous copy. As always, our team is constantly engaged with various entities, companies and organisations to make sure we stay on top of the pack when it comes support and innovation. We are please to inform you that we are now full official members within Autism Europe and that will help us get a broader perspective on what is happening ashore and what awaits us in the near future. Throughout this issue you will find a lot of information on activities carried out over the past couple of months especially it highlights the numerous activities we’ve had in April. As we’ve done last year we’ve participated in the Light it Up Blue event in collaboration with The Marigold Foundation. We would like to take this opportunity to extend our gratitude to Mrs Muscat for her great support in making this happen. As always, we will push Autism on the forefront of our agenda and make sure we advocate for tolerance and understanding, secondly we will share our experience with other foundations and several associations who like us bring “Autism” on their priority list. May we take this opportunity to wish you a merited summer break. We truly hope you’ll spend quality time with your loved one’s. Best wishes from all of us at APA. Thanks and as we say “Help us help you.” Omar Farrugia President - APA.
Up Coming Events - Dates to be advised...
Family & Friends BBQ
New on the Spectrum
Day by the Pool Meetings with KNDP
A suggestion meeting will be held for all the Autism Parents in order to give everyone an opportunity to put forward suggestions and views for the future. What do you want to see from the Association? Come share your thoughts! Page 2
Attention Ladies! Its almost time again!
Events so far…. January to May January Events 08/01/15 Meeting with Hand in Hand Malta; 22/01/15 Boxercise Activity for the parents
February Events 07/02/15 Autism Parents Associations Annual General Meeting held at KNPD
March Events 10/03/15 Valerie Brincat obo APA on “Eli & I” on Net TV
of the European Parliament 26/04/15 APA’s Annual Autism Fun Day at Attard PrimarySchool Grounds 28/04/15 Meeting with Private Secretary of Minister Michael Farrugia 29/04/15 Meeting with Antonello Gauci (CEO of Inspire re: Summer School)
May Events 02/05/15 Omar Farrugia President of APA attended two day Conference in Barcelona to complete procedure for APA to officially become full members of Autism Europe.
13/03/15 Valerie Brincat obo APA on Niskata on TVM 15/03/15 Walk Now for Autism. Thank you to our sponsor ARtech Malta and Gaetano Mifsud Ltd for the fresh fruit. 30/03/15 “Malta Llejla” on Net TV Speakers Valerie Brincat and Doreen Mercieca of Inspire
April Events 31/03/15 L’ Arka ta’ Noe Visit 01/04/15 Light it Up Blue @ MCC— Valletta; 07/04/15 Dak li Jghodd” - One TV. Speakers Valerie Brincat, Chrysilla Buhagiar (parent) & Lisa Francalanza (Autism Support Team). 11/04/15 Program on One TV with Melanie Magri discussion re: Inclusion, Residences in the Community and Independent Living 16/04/15 Autism Awareness talk with Year 5’s of Birzebbugia Primary School 21/4/15 Educational Talk re: Sibling Psychology by Connie Magro, Stejjer Socjali by Miriam Cassar and Malta Service Dogs Foundation 21/04/15 Meeting with In Alto Mare 24/04/15 Meeting with Dr. Miriam Dalli member
06/05/15 Victoria Secondary School Gozo organize an Autism Awareness Day and fundraise for APA making fresh fruit salads and smoothies to sell. 07/05/15 Bjorn Micallef, 18 year old with Aspergers gives Autism Awareness Talk for St. Thomas More Girls Secondary, Sta. Lucia 08/05/15 Valerie Brincat gives Autism Awareness Talk “The Parent’s Perspective” for St. Thomas More Girls Secondary, Sta. Lucia 17/5/15 APA participates in Spring Festival organized by LEAP Qawra to raise more Autism Awareness 18/05/15 “Dak li Jghodd Teens” on One TV. Speakers Valerie Brincat, Petra Peel and Dr. Rita Micallef 27/05/15 Meeting with MEUSAC re: EU Funding possibilities. 28/05/15 Meeting with Ministry of Education re: Equipment Aid (Mente) for ASD children in schools. 29/05/15 Meeting with His Eminence Mgr Charles Scicluna
Autism and Preparing for Summer – Part 1 – Sensory Issues
Most people look forward to the summer, but it can be an awkward time for people with autism. Not everybody likes the hot weather anyway, but if a person`s senses are heightened – as is often the case with autism – then a lot of difficulties can come along with the heat. This doesn’t mean that summer has to be impossible for autistic people, but it is good to be aware of these difficulties. One of the major issues is sun cream. For someone who has sensory issues this can be an absolute nightmare. Not only might it feel absolutely disgusting to have sun cream applied, but the person has to have it rubbed on their entire body potentially. The feel of this is one thing, but it is not simply a passing feeling – they may be able to feel it on their skin for the entire day. Sun creams can also have a strong smell to them. It can be the equivalent to somebody who doesn’t have these sensory issues having to smear mud all over their face and body, and having to leave it on all day, and every hot day for the duration of summer. This isn’t to say that people shouldn’t put sun cream on just because it is difficult for them – the consequences of not doing so could be serious, and could even extend to skin cancer. But it is worth remembering, if an autistic person doesn’t want to go outside much during the summer, this could be one of the reasons why. Most people would put on a pair of sunglasses without even thinking twice, but for people with autism this can be very difficult. Some people find that the glasses feel heavy, odd, and even painful on their face. And other people hate the strange distorted view of the world this gives them; everything will appear tinted in a certain colour, or darker than it actually is. This is obviously the point of the glasses, but doesn’t make it any more comfortable. As soon as the heat appears everything changes; people flood out on to any bit of grass they can see, men suddenly decide it`s ok to be topless in the street, and when somebody
First of all there are smells; this might not sound pleasant, but in the heat everything and everyone smells. Bins in the street develop a stronger smell as the heat gets to their contents, people take on a particularly nasty smell at this time of year – equal parts sweat and sun cream. This might not be overly noticeable to everybody, but if somebody has a
heightened sense of smell it can make being around people very difficult. Things instantly become noisier when it gets hotter; more people decide to be outside. The likelihood is the neighbour’s gardens/ backyards will be full of people having barbecues. Children will be playing in the streets, and overall there will be more people around making more noise. The light is so much brighter. The sun reflects off surfaces, and lights up rooms, and places that would otherwise have been darker. This sounds very minor, but if an autistic person does have sensory issues then even the most minor changes can be serious, and difficult for them to accommodate. So with all of this is it any wonder that people with Autism don’t always want to go outside in the summer? With the assault on the senses that summer can turn in to, it`s not really surprising that some of them choose to spend the majority of it indoors. Not all people with autism will do this of course, or some may feel compelled to, but not want to. Further though our newsletter we will attempt to give some tips, and advice that will hopefully help people with Autism, and their families to tackle some of these sensory issues.
A real life story from a sibling of a person with Aspergers The guilt of non-participation. By Alice. I should probably start by saying that my story is unfinished. I'm 20 years old and my brother is 23, he was diagnosed with Asperger syndrome when he was about six and every day I hope for a silver-lining that is yet to appear. I've always been very sociable, and I'm writing this story to any other siblings, or anyone for that matter who has felt the same guilt that I have - the guilt of nonparticipation, as it were, in my brother's AS. When we were younger I went to my local grammar school, while James was sent away to a specialist boarding school about 90 miles from our house - something that killed my mother at the time, even though she knew it was for the best. James was bullied and often felt isolated, while I was popular and surrounded by a close group of friends.
What I would like to say to other siblings is that we cannot blame ourselves, as I have often done, for any suffering that our siblings are - or have - felt in their lives, and that we can make a difference. Even though James isnâ€™t in a good place right now because he craves the relationships that I have so easily made, I will continue to do everything in my power to make him a happier person, as I know that I use my experiences, and my skills to teach him skills of his own. The fact that we cannot fully understand AS does not mean that what we are doing will not help. Has there been heartache over the years? Yes. Would I change my brother just a tiny bit? Not for the world.
Even though we have always been very close, I was lucky enough to have made my own friends and it tortured me to see that my brother did not. I still feel terrible about going out of the house to spend time with my friends, knowing that James is sitting at home watching a DVD, bored out of his mind but too fearful of rejection to leave his comfort zone. I also feel that there is nothing I can do to help, and it is the feeling of utter helplessness for siblings which baffles and angers me as I write this. With every ounce of rejection in his teens it seems that a little glimmer of light inside of James faded, and we have all been trying to re-light the spark inside of him for years.
Sensory Solutions – Sun cream
This does not mean that the summer can’t be enjoyable for people on the Autism Spectrum. Sensory issues exist, but there are ways to deal with them. It is impossible to promise that all these solutions will work for everybody who tries them, but they can be helpful for some. When it comes to sensory issues and sun cream somebody with autism might think about dressing in a way that mini-
It doesn’t have the same thick consistency as many difficult for them to restrict the times of day that they go out, but they should try their best to do so. If they accept that putting sun cream on is a reality of going out during the hottest parts of the day then they will either have to do this, or go out at a cooler time. regular sun creams. Even though it generally might still need rubbing in, the application can be easier. • One application a day sun cream – Obviously this would be the ideal choice if somebody has to wear sun cream as it means instead of having to keep applying it they can simply put it on each morning, but it will need reapplying after going in the water. So while it might be good for everyday use, it might not be any different than regular sun cream when it comes to holiday use.
mises the amount of sun cream they have to put on. For example, long sleeved but light tops, three quarter length shorts, and trainers instead of sandals or flip-flops. This doesn’t take away the unpleasantness of putting on sun cream, but it does make it less of an issue as it is going on less of the body. If the autistic person applies their own sun cream they might draw up a list of things they enjoy doing in the summer, perhaps swimming or walking or even just sitting outside to read. They could then decide if they feel they would rather not do those things, or put up with sun cream, and be able to do them. If it is a parent trying to persuade a child to put on sun cream then it is important to explain to them that they won’t be able to do certain things unless they do wear it, and to respect whatever decision the child makes. So the parent might say `if you don’t wear sun cream we can’t go to the park. The child might decide that they don’t want to put sun cream on any way and that they are willing to not go to the park because of this. So the parent, instead of reacting and trying to persuade the child, should simply accept their decision whenever possible. Of course there will be times when this isn’t possible, and in this case the following tips might help. • Scent free sun cream – it is possible to buy scent-free sun cream. A quick on-line search will bring up several results, such as Green People, who offer scent free organic sun cream. It does tend to be a bit more expensive, but it might be worth it.
Spray-on sun cream – sometimes spray-on sun cream can be easier for autistic people to deal with.
• Let the child rub cream in – the autistic person might find the feel of the sun cream difficult, but adding to this the feel of somebody`s hands rubbing on them might make it unbearable. If they rub it in themselves they can take their time, and do it as gently as they want – they don’t have that physical contact with another person which can be uncomfortable, or even painful. • Create a routine around applying sun cream – this might be something simple like putting sun cream on at a certain time in the morning before the sun is at its strongest. An example might be: get up, have breakfast, put on sun cream, and get dressed for the day. It might be worth having some sort of visual aid for this – a chart with items on that can be ticked off, or just a list that the child can keep by their bed. This page has focused primarily on sun cream because this is one of the biggest and most difficult issues to overcome. Many people will avoid the sun altogether simply to avoid having to put sun cream on. And its application can be a difficult, and even tortuous experience for many autistic people. While there are no easy answers, hopefully the tips contained here will help to ease some of this stress and difficulties.
This is a blog from the Autism Daily Newscast written by Paddy-Joe Moran, a nineteen year old author of two books and blog writer with Aspergers from the U.K.
6 Tips to Help Your Child Avoid Summertime Meltdowns Summer can be a challenging time for children with behavioural and social issues due to a more relaxed schedule and loss of social opportunities. As a result, many children can become more prone to meltdowns. The following six tips and strategies will help parents keep kids calm and free from meltdowns once the school year is finished. ing applied to their face and neck. 1. Keep A Schedule Whether it’s a written schedule or one with pictures for younger kids, your child with special needs will feel calmer and safer knowing what is coming next. During summer break, it can be more difficult to give your child a concrete schedule since activities can be short-lived or even spontaneous. For the parts of your day that are openended, try adding a block of time to your child’s schedule called “open play” or use a question mark to indicate the time slot has yet to be filled. Discuss the schedule regularly and provide information for spontaneous events as they arise. For example, if you decide to go out for ice cream, let your child help you draw or write it in the schedule. Always let your child know which events will take place outdoors and which will be loud or crowded. For kids with neuro-behavioral disorders, more information means better transitions and less meltdowns. 2. Have A Family Meeting Before you attend parties, parades, or other fun events, have a quick family meeting so your whole family knows how long you plan to stay and how you expect them to behave. This will benefit neuro -typical children as well since any child can get overstimulated from summertime excitement.
3. Make Sleep A Priority Continue to make your child’s sleep schedule a priority even in summer. While you may adjust your schedule to accommodate a later sunset, it is still important to establish consistent sleep and wake times throughout the season. Revert to your school schedule two to three weeks before school begins again so your child is well-rested and ready to learn.
4. Plan Ahead Children with significant sensory sensitivities may require a little extra planning to enjoy summer activities. For example, you may need to bring along ear plugs if you will be in a noisy environment or sensory fidgets if the child is expected to sit still. For sensitive kids who need to wear bathing suits or other potentially aggravating attire, bring along soft, comfortable clothes for them to change into as soon as possible. Be prepared by knowing your child’s specific limitations and how you will handle them if the need arises. Be proactive to stay ahead of sensory sensitivities instead of waiting for meltdowns to begin. 6. Be Inclusive If your family members have food sensitivities or allergies that prevent them from eating summertime treats, plan ahead to offer alternatives like allnatural candy or a gluten-free treat from home. Children with neurobehavioral disorders like ADHD and Asperger Syndrome often feel different already, so make an extra effort to include them in as many festivities as possible. Keeping kids calm and focused this summer isn’t out of reach. A little extra planning and preparation can help your child with a neurobehavioral disorder enjoy all the fun things summer has to offer while minimizing stress and meltdowns. .
How to Navigate Summer Playdates for Kids with Social Issues initially focus their efforts to connect and communicate on one friend. While group play dates may take some of the pressure off and seem more fun initially, ultimately it’s easier for a child who struggles with making friends to focus interaction on one person at a time. In this way, potential bullying behavior or someone feeling left out is avoided.
Don’t Be Quick to Intervene As the school year comes to an end, a child’s opportunity to socialize with peers becomes more limited. For many children, summer is the time for pool parties, sleepovers and summer camps. However, if a child struggles to connect socially, they may find summer to be a difficult and lonely time. The following tips will help these children find more social opportunities this summer.
Start Planning Now
Confidence in personal relationships is half the battle for children with social issues. Parents’ first instincts are usually to intervene and “fix” any issues by stepping in when play dates start to become problematic. Instead, it’s important for parents to give their kids time to work through some of these social issues on their own. It will not only boost self-esteem but will also teach them how to work things out for themselves.
Children should be encouraged to reach out to school friends and plan summer play dates before the school year ends. That way the connections they’ve already made with classmates are still fresh, making it easier to segue way into summer.
Focus on Activities If a child is socially awkward, its never more apparent than when boredom strikes, putting unnecessary pressure on a friendship. Making sure there is plenty of activity to keep kids busy during a play date will help kids with social issues. It’s also a good idea to have a backup activity in case the first one falls flat. These “Awesome Summer Fun 101” activities on Pinterest offers lots of ideas for summer activities!
These are articles posted on Brain Balance Achievement Centre, a growing franchise in the USA who help children with learning and behavioural issues.
One Friend at a Time It’s important for a child with social struggles to
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Book Review Bright Not Broken: Gifted Kids, ADHD and Autism. by Diane M. Kennedy & co-author Rebecca S. Banks w/Temple Grandin
Parents with lots of experience and brilliant ideas are ready to answer your questions!! Hope to see you there…. Facebook
The future of our society depends on our gifted children—the population in which we’ll find our next Isaac Newton, Albert Einstein, or Virginia Woolf. Yet the gifts and talents of Autism: Valerie Brincat - 7928 5438 some of our most brilliant kids may never be recognized because these children fall into a group known as twice excepAutism (0 to 8 years): Carmen Abela - 9946 4269 tional, or “2e.” Twice exceptional kids are both gifted and Asperger Syndrome: Petra Peel - 9925 8845 diagnosed with a disability—often ADHD or an Autism SpecDiets & alternative therapies: Vira Bonavia - 7903 0687 trum Disorder—leading teachers and parents to overlook the child’s talents and focus solely on his weaknesses. Too often, Gozo: Joanne Sciberras: 9955 1337 these children get lost in an endless cycle of chasing diagnostic labels and are never given the tools to fully realize their own potential.
Contacts: Parent Support Aides
2015 Memberships are due!
Membership renewals are due every January. So for those of you who haven’t sent in their renewal or if you would like to become a new member, we kindly ask you to fill the application form that is being sent with this newsletter and send it to the address noted in the form together with €10 for your 2015 membership. All money collected from memberships and donations received go towards the Association’s expenses, which include the printing of leaflets and the organization of activities for parents and children. Financial statements, outlining all income and expenses for the past years will be presented at the Annual General Meeting, and published on the APA website.
Bright Not Broken sheds new light on this vibrant population by identifying who twice exceptional children are and taking an unflinching look at why they’re stuck. The first work to boldly examine the widespread misdiagnosis and controversies that arise from our current diagnostic system, it serves as a wake-up call for parents and professionals to question why our mental health and education systems are failing our brightest children.
Donations Donations are Welcome and appreciated. You can help us by sending cheques payable to Autism Parent’s Association P.O.Box 30 Marsa