The Inspiration behind Special Needs Living Magazine - Living with Autism & Epilepsy

T H E I N S P I R A T I O N B E H I N D S P E C I A L N E E D S L I V I N G M A G A Z I N E

By Hannah Wagner

It’s with tears of happiness that I can share Jordan’s story with you in honor of his 9th birthday. Thank you to my dear friend Hannah Wagner for taking the time to interview me and write our story. It has been a glorious nine years, we are miles further than I ever thought possible in his special needs journey, and we know there will be many more milestones to come. I hope sharing our journey will have an impact on you, or bless someone you know.

We will never give up fighting for you, buddy! You’re such a blessing in our life!

A letter from one mother to another Told by Jamie McCabe to Hannah Wagner

Jamie,

I’ve thought a lot about how to write this and I’d like to do things a bit differently than I usually would when writing a story about someone’s life. Writing in the third person seems too impersonal. I want your life and Jordan’s story to become very personal and real to others, even if it’s only while they read these words. For that reason, I will be writing directly to you. I hope that people can put themselves in your shoes, feel the things you’ve felt, and see the world through your eyes. I hope they can feel the empathy and compassion that I felt for you as you opened up and shared your pain with me. And I hope that you will be able to see yourself from a new perspective, too, one where you know beyond a shadow of a doubt the incredible mother that you are.

Jordan loves bath time, but he really loves getting in the bath with his clothes on after we just got him out and dressed.

Justin, Jamie, Jaylin, Jordan and Jade

A traumatic birth

We’re sitting by the water at Eagle Creek Park, and I start by asking you to tell me about the very beginning. How was your pregnancy? How was his birth? You tell me that the pregnancy was normal, that you trusted the process and the doctors. For example, you got the flu shot because you were told by your doctor that if you didn’t, you would risk harming your baby. This was, of course, the last thing you wanted. So you were compliant, despite having been given no specific pros and cons with which to weigh both sides of the question and reach your decision, something that you now wish would have been clearly expressed. But at the time that was ok with you, because that’s what doctors are for, right? To guide you where they know best.

As you approached your due date, your doctor brought up being induced. She told you that many women decide to go this route and that it’s very convenient. Again, you tell me that you were given no pros or cons to weigh and that today you wish you would have been given more information. Had you known more, you might have made a different choice. But as this was your first child, you did what your doctor recommended.

Jordan with his mom, Jamie

Jordan with his sisters, Jade and Jaylin

As it turned out, induction did not suit you or Jordan. After nearly two days in the hospital, and being given Pitocin and Cervidil, there was hardly any dilation. I can feel your exasperation as you tell me how difficult it was to wait without any results. The doctors told you that you could go home and wait, or that they could break your water for you to speed things up. At this point, I know you were anxious to meet your son, and so you elected to stay.

After last year, we thought this was a very fitting shirt.

Your labor was jump-started with your water being broken. Contractions became intense and you began to push. The pain heightened, and you were given an epidural. You stood up (something you tell me that the interns all found very alarming, and which, by the way, was not something you signed on for – having multiple interns in your birthing process, watching and learning from such an intimate moment of your life) and pushed with all your might… for hours. Not two, not three, but four and a half hours. Today, you can see the insanity in this situation. Why did they wait so long? Why did they let you push without any aid or change in direction when your baby clearly wasn’t arriving as was intended. Finally, the doctors decided it was time for a C-section. But then there arose a new issue entirely. You pushed so hard and so long that your baby boy was stuck.

Jordan loves playing in the mud over summer after it rains

Your mom went with you to the operating room and videotaped what she could, so while you couldn’t see everything then, you have since watched it all. You were cut open, and the doctor reached through the opening to try and pull Jordan out while the nurse tried to push him back in by his head. You just felt a constant pulling and tugging. You do remember that the nurse was calling for more help and slipping on blood.

At long last, Jordan was freed from your body. But something wasn’t right. You pause and the tears reach your eyes and your voice tightens as you relive the horror. He made no noise, no cry. He was blue, still, unresponsive. Jordan’s APGAR score was 1. Just 1. His head was bleeding from the pressure of being stuck for so long. “Finally,” you tell me “he made a couple of little whimpers.”

The aftermath

At first, you and Justin didn’t ask many questions. You were beyond exhausted and in a state of shock. You both just wanted him to be okay. He spent a couple of days in the NICU, which were very challenging days for you, healing in multiple places in your body and walking back and forth from one part of the hospital to the other, just to be able to nurse your newborn.

Finally, he was released and you were told that he had cephalohematoma, which is a collection of blood between the baby’s scalp and skull. The doctors described it as something he would heal from, and you were given your first ray of hope. You were relieved. Things would be okay. You followed up with a specialist and believed that Jordan would make a full recovery and all would be well. Your fears were assuaged and your trust in the medical community remained, despite your trauma.

You took Jordan to all his well-child check-ups and gave him all his shots (36 immunizations in 18 months). You discussed your fears about so many shots in such a short period of time with your family and were reassured that you, and your two siblings, received all your shots with no complications. You did, however, take note of the drastic increase in the number of vaccines since you were a child (where Jordan had 36, you had 8 or 9) and you tell me that something about it all just didn’t feel right. But just like the flu shot and the induction, this was what the medical community said was normal and healthy, and so you obliged.

Jamie holding the very first issue of Special Needs Living that she was able to bring to the community in November of 2020

Jordan’s development

Two days before Jordan’s first seizure, a couple of months before his second birthday, you took a video of him. In this video, you asked him to point to his eyes, his ears, and his nose, which he does. You felt that he was growing and learning at a normal rate. His pediatrician was aware of a couple of nuances in his behavior, but nothing stood out as a cause for concern. But when his seizures started, everything changed.

Jordan was diagnosed with epilepsy, and you became connected with First Steps, a program here in Indiana that intervenes early to help parents ensure their children have the support they will need throughout their life with whatever developmental challenges they may be facing. Then, as if that wasn’t challenging enough, he was also diagnosed with autism. This was something your mother had wondered about. Being an advocate for children’s mental health had her around many children and she knew what to look for. But just because she thought that his obsession with tires and spinning objects and his need to constantly have something in his hand could put him on the autism spectrum, it didn’t make you worried. Besides, you only had one child and had nothing to compare him to and just believed that he loved his toy cars.

I would have thought the same thing if I had been in your position, and I honestly would not have wanted to even consider the possibility that my child wasn’t developing normally. But then it became an unavoidable and very real diagnosis for you. Jordan was autistic, seemingly non-verbal, and epileptic.

Shattered dreams

Jordan getting an in home EEG test done

Even though we’re sitting outside on a sunny, beautiful day as you tell me these things, I can see the weight of the grief you’ve been carrying since you first realized that Jordan would never have a normal life. You tell me how you grapple with anger, frustration, and even guilt. Jordan is almost 9 years old at the time of our talk and cannot point to his face the way he could when he was 22 months old. You say to me through your tears, “You don’t have a child who can do something and then not do something and not think…that it could be something that he was injected with that caused that.” I know what you mean. How did he slide back in his progression? Why would he lose his ability to perform these basic identifications of his own body? Was it something he was given in his early years?

I can only imagine how it would feel to begin to rack your brain for any way you could have avoided this, anything you could have done differently or better. You wish there could be a definite culprit, not only to know how and why this happened but so that you could begin to forgive whoever was responsible. But instead, you tell me through tears of anger that you don’t even know who to forgive. How difficult it must be to heal when you’re not sure where to begin.

You tell me that every day you are reminded of what he cannot do. Fears plague your mind. You wonder things from as simple and logistical as “Will he still be wearing diapers when he is 40?” to questions as gut-wrenching and devastating as “Who will take care of him when we aren’t around anymore?” Your mourning is constant, the grief never-ending. And yet… you manage to see the good in it all. You’ll probably never have to have the sex talk with him or worry that he’ll get mixed up with the wrong crowd and make poor life choices.

You know you’re not alone and, in fact, you’ve brought other families with special needs children into your house to support and love them. You’ve turned your pain into a purpose and launched a special needs magazine that connects the community to share stories and resources. But what I find most inspiring is how you find joy in his joy. You know he doesn’t need the coolest toy or the latest video game to be content. As long as he has something in his hands and space to be, he is happy. You tell me, “He has brought me and Justin closer to God by seeing God through him.”

Research and healing

Amidst your grief and the process of accepting a life you never expected you have maintained a fierce desire to give Jordan his best possible life and to bring him healing in any way you can. I believe it was also part of your healing to do research and find answers and try different things that could help Jordan.

You came to realize that Jordan has a MTHFR gene mutation, making it difficult for his body to detoxify. This was something that was tested and confirmed by doctors, and you knew to look for this because your brother has it as well. This led to you buying your own hair test and reading a book on how to successfully administer and read the test. Through your test, you found that Jordan had mercury and lead poisoning. To confirm and discuss, you sent the results to his autism pediatrician, who responded by saying that he saw no issues. You highly doubted his response and felt frustrated by his lack of confirmation, but were vindicated when he followed up with you just a few days later.

Coincidentally, this doctor was already scheduled to attend a training on how to read hair test results just after you reached out to talk about Jordan’s. After this training, he confirmed that you were, in fact, correct. Jordan did have mercury and lead poisoning.

You did more research and found something called “chelation therapy.” Through this process, you administered pills to Jordan every three hours for 72 hours a week for 52 weeks straight. These substances, these chelators, bound themselves to the heavy metals and carried the mercury and lead out of his system in a way that his body could not do for itself.

And this is where you started to see miraculous changes. At about 20 weeks in, he finally began to make direct eye contact with you and Justin, something he had never done before. You tell me the fog lifted. I remember when I first met you and you had been doing this therapy for several months already and you told me that he said “I love you” to you, something you’d never heard from him before. He started paying attention to his surroundings and listening with intention and even began to engage in play with his little sister.

Jordan in his new adaptive stroller. Having this has been so helpful when going places, since he is an eloper.

Another method of healing you’ve tried for Jordan is stem cell therapy with Destination Regen, with stem cells taken from umbilical tissue, which also yielded extraordinary results. Jordan used to run off and away whenever you would venture outside, but after the therapy, he started following directions and staying close to you. He stopped darting away and now can enjoy a walk with the family. You tell me of a time when he actually turned around and got into the car and sat down in his seat when you told him to, and I can sense the pride and joy in your heart. To see him hit these milestones is good for your soul. You know that what you’re doing is working, and you’re seeing his life improve because of it.

Finally, you’ve even been able to help his seizures. Of course, Jordan has been on anti-seizure medication for quite some time, but that just didn’t seem to be enough. He would still have episodes and you knew in your heart that there had to be more you could do. You were led to Wholestic Nutrition, where they did a very thorough and complete food sensitivity test. You already knew he

Jordan leaving hospital after having seizures at 22 months old

was gluten intolerant, but you found out that there were so many other foods to which he had mild to moderate sensitivities. From the time you started this new regimen to the time of this interview, Jordan was seizure-free –for over four months. The new lifestyle of constant food prep took time and commitment and dedication that was taxing and difficult for you, but you persevered and saw the rewards of your labor. You were even told that he was finally free of mercury and lead poisoning. Your determination never ceases to amaze me.

Informed consent

Jamie, I know you’ve struggled with having any sort of faith in the traditional Western-medicine community since Jordan was diagnosed, and I don’t blame you. Your research gave you due cause to believe that the high number of vaccines Jordan was administered could have contributed to his autism and seizures. Perhaps if you had been told from the start that he had a gene mutation that made it difficult for his body to detox, you would have fed him differently or asked to review the list of ingredients in the vaccines he was administered. Why aren’t children tested for this gene mutation before being immunized? Why weren’t you given more information about the flu shot you were given while pregnant to know what their possible negative side effects could be? Perhaps if you had known more about the potential risks of induced labor, you would have waited for your body to naturally enter labor instead of forcing the issue with drugs and breaking your water. Perhaps all of these things could have made a life-changing difference. You will never know, and that is crushing. The issue at hand boils down to informed consent.

You were not given the right of informed consent. And who knows, maybe even with all the information available you would have made the same decisions and the same results would have followed. But at least today you would have the peace of mind of knowing that you truly were told all there was to know. But you put your faith completely and totally in a medical system that didn’t give you the information you deserved to make your decisions, and this has consequently led you to a point where you feel like you can no longer trust the general narrative, and you wonder why you weren’t given all the facts.

Unfortunately, many people who have experienced a tragedy live their entire lives this way, wishing they had known more. If they could have only known that there would have been a semi flying through that intersection at that time that would hit their car and leave them paralyzed, they would have left five minutes earlier. If they could have only known that their children would slip away at dinner and wind up unconscious in a pool, they never would have gone to that party. These are things no one can know, no matter how much information they are given.

Jordan in his ball pit on his sensory play mat

But with the medical community, things are different. Because there is so much that we have not studied or do not know ourselves as patients, we rely on our doctors and nurses to present us with all the information available to empower us to make choices for ourselves. But when we are treated without that individual time, care, and attention, that right is taken from us. I am so sorry this happened to you.

Jordan having his in-home EEG test done, hanging with his sister, Jaylin

I can see and understand why 2020, Covid, and the resulting vaccine would be very, very difficult for you to handle. This vaccine was created faster than any before. We have no long-term studies and we are asked to take a leap of faith, to do our part to help eliminate a global pandemic. Those of us who are hesitant and cautious are labeled as selfish and insensitive to others, and those of us who are excited and relieved are labeled as sheep and gullible. There is no winning here. The pressure placed upon our society to comply with a form of medicine that you genuinely believe has harmed your child is heartbreaking to you.

Jamie, Jordan, and Justin

That is why I believe Jordan’s story is so important. Not to sway people to make a decision one way or another, but to remind people that they have the RIGHT to do the research, ask the questions, and 38 take the time to make their decisions. Ultimately, they have the freedom to make their own choice based on what they believe is best for their bodies, and the right to take into consideration all of the facts their doctor can present them with, so they have the peace of mind of knowing they made the decision for themselves.

I wish I could go back in time and give you the flu shot insert. I wish I could go back in time and research natural vs. induced labor with you. I wish I could go back in time and give you a doctor who would ask you all about your child, do genetic testing, and establish a personal connection based on trust and openly shared information before they would ever tell you what would need to be injected into your baby boy. Not because I’m 100% certain it would change the trajectory of what actually happened, but because it would bless you with the real experience of what personalized health care can and should be in this country.

Not the end

Jamie, we believe in a good God, and you said to me yourself that “this is not our forever home.” One day everyone will be given new, gloriously remade bodies, free from sickness, disease, and imperfection. We will all be completely and perfectly restored. You know this is coming, and while it does not always make the day to day life easier, it is a promise we can lean on. God keeps His promises. He chose you to be Jordan’s mother because He knew you possessed the qualities Jordan needs more than anyone else on this Earth. Ultimately, no matter how the medical world has helped or harmed you, you are still the very best mother for your boy, and he is the very best son for you. Rest in that. He is 9 and thriving because of your ability to let God’s healing and love flow through you. I don’t think you stop often enough to think about all that you’ve done for your son and appreciate the person God has made you to be. Every time I see Jordan, he is happy. Even if he’s had a difficult day of seizures, there is a sense of contentment in him that can only come from knowing deep down inside that his mother is here, sacrificing her life to take care of him always.

As a mother comforts her child, so will I comfort you. Isaiah 66:13a

Let this birthday be as much for you as it is for him. God’s love and healing doesn’t just flow through you to Jordan. It lands on your soul, too.

If you would like to share your personal or family story or to nominate someone else to be in an upcoming issue of Special Needs Living, email us at SpecialNeedsLivingIndy@n2pub.com.