Issue #26 – Exploring Different Disabilities – Ari’s Story

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Exploring Different Disabilities

Ari’s Story

By Leah Cohen

 

In today’s society, special needs get categorized into disabilities recognized globally. You have autistic kids, kids with Down syndrome, you’ve got cerebral palsy, muscular dystrophy and cancer. All, commonly heard of with support and community helping these kids. Summer camps devoted to kids with cancer, schools dedicated to autism, and organizations geared specifically for kids with Down syndrome. But what happens to the kids who are what I jokingly (because we need to laugh sometimes) refer to as ‘mixed breeds’? The children who have rare disorders and diseases. The medically complex, medically fragile variety who are also Intellectually disabled and handicapped. Think of it like hanging out in an all-inclusive resort – all included! Where do they fit in when the time comes to choose the right school or summer camp?

Allow me to introduce my courageous son, Ari! My mixed breed who just wants to belong and have a place in this world to truly be all he can.

Ari has a rare chromosomal disorder called Trisomy 9 mosaic. Here is our family’s story; it is my hope that other families will gain strength and knowledge from Ari’s journey.
Most children born with Trisomy 9 mosaic are considered non-compatible with life. In simple terms, a fluke during development resulted in an extra chromosome 9. A set of three instead of two. But here is where it gets interesting. Each kid with a mosaic version has a different percentage in their body of the extra chromosome. In Ari’s case, 80% of the blood they tested had the third number 9. Complete Trisomy 9 babies typically do not survive birth. However, because each child is born with the percentage in different parts of their body their medical and special needs vary. Our discovery into diagnosis was Hashem’s way of preparing us and giving Ari a chance to fight and become the warrior he is today.

I knew from day one something was not right. Call it a mother’s intuition, but I knew our lives as we knew it were about to change.  As I reflect on the timeline I realize more than ever that Hashem was on our side with this one. Not knowing our baby’s diagnosis until nine months old saved his life. His low oxygen at birth should have resulted into an automatic tracheotomy. However, since thinking he was a typical baby, the nurses just watched him and let him sort himself out – saying he just needed time to figure this world out. His bottle feedings took hours for mere ounces! He would turn blue and the nurses would advise that I just take the bottle out – he needs to regroup himself – he’s brand new. So, I did what I was told and in the end a feeding tube was avoided for the time being, giving Ari a chance to learn how to eat. In actuality this was not the case and at six weeks old Ari stopped eating, it was just too much work for him. He had failure to thrive and a cough that tore at your heartstrings that no doctors or specialist seemed to understand. All this led to the diagnosis at six weeks old of Ari having no suck, swallow and breath reflex. This was clue number one. Feeding therapy started the next day and we taught Ari how to enjoy food and breathe!!! His cough, though, just kept getting worse and his newfound breathing was taking a bit. Finally, a pulmonologist ordered a chest x-ray – one that turned our lives upside down and introduced us to the medically fragile world of hospitals. They came to us that day as I held my six-week-old son and told us the x-ray showed a tumor on his spine, maybe cancerous, maybe not, but it needs to come out now! It’s pressing on his trachea and that’s why he’s coughing. An ambulance will be here soon to transport Ari to a neurosurgeon. On cue, panic attack number one …. all was silent in my head as I tried to grapple with the words the doctors tried to tell me. All I could do was think of my little yingele, my little nefesh’le laying in my arms in his Gap overalls about to face the unknown. Oh, how much I loved him! Everything went pretty fast from then, a CT scan was ordered before transfer and we were told that since they needed to intubate Ari for this, chances are he won’t come off the respirator. I kissed his little punim up and down, taking in his tiny features. Clue number two was about to come into focus. They wheeled Ari out and his tiny lips were trying to suck on a pacifier. No tube?? What’s going on?? ‘Hashem is Good ‘my Bubby Rochel likes to say, and this was my first glimpse of hope! It was not a tumor. The doctors explained what they saw was an opening on the spine and different anomalies up and down the spine – including a syrinx – a collection of fluid on the bottom. It was not good news but to us it was the best news! It was not a tumor and it would all be sorted out down the line, but for now he was okay! We just celebrated that and were thankful the doctors took swabs to conclude that Ari had whooping cough. The right medication and nebulizer treatments, and he began to regain his strength. As we recovered from this ordeal Ari continued with every therapy possible. Once calm, we scheduled an MRI to investigate what it was they saw on and around his spine. Spina Bifida Occulta – the spine has many openings and kinks but nothing was protruding from his skin; it was enclosed. This resulted in tethered cord syndrome. Would Ari ever walk?! It was not even discussed because they needed to untether the cord ASAP! After Ari’s surgery things calmed down a bit and it was time to investigate all the clues. We still did not know whether he would ever walk or even have control of his bowel and bladder. His low muscle tone and other disabilities started to show despite the intense intervention, physical and speech therapy. Our primary doctor mentioned to us that all of this hoopla sounded “syndromey” and under his guidance we sought out a genetics specialist. Within a week of his blood test we got a call with the results and I was back with the silence in my head I felt on that day in the hospital less than six months earlier. But this time as I looked at my happy son, I made plans! Lots of plans! I knew in my heart and in my soul that this might be his diagnosis but it will not define him! We followed orders and went to every specialist we needed to see that kids with Trisomy 9 mosaic need to be followed by.  Each one was in awe of our almost-one-year old who had defied the odds and had begun to thrive! Ari was rolling over just after his first birthday, sitting up by 2 and a half and at 3 taking his first steps!!!

Step by step, we conquered together as a family, the world of the medically fragile and special needs, learning new terms and medical jargon like Hydrocephalus and Arachnoid cysts, and building an army that would become Ari’s Army! Therapist and doctors, family and friends became our community of support. And we settled into our new routine!

Today Ari is 16 years old! He is in high school and thriving! It’s been 16 years of surgeries and hospital “vacations” but it has also been 16 years filled with humor and grace. Ari now has a G-tube for all his medications and it was the best decision we made. At the age of 11 Ari developed nocturnal seizures. With all the new medication and his oral issues, it became not only necessary but a way to keep him healthier and out of the hospital, because we now had access to administer fluids for dehydration and whatever else he needed medicinally. It was a game changer. Ari eats all types of food, but of course pizza and pasta rank supreme! I think until today his feeding therapist still has our original list we made when he was a year old, of all the foods we hoped he would one day be able to chew. Ari has surpassed it times a million!

Ari is non-verbal but his communication is more than we could have ever imagined! He has hearing loss and needs to wear hearing aids, but coupled with his ADHD and OCD he doesn’t like to wear them, as it gives him too much over-stimulation. However, he does have a sign interpreter and is completely fluent in American Sign Language. Thanks to modern technology Ari has spent all of elementary and middle school in an AAC program – Augmentative and Alternative Communication, practicing all modes of communication. He can navigate a communication device like a boss!!

All in all, Ari is a mentsch and has compassion and love for all the people who surround him day in and day out. We could not get by without our friends from Chai Lifeline South East. Through all the ups and downs they have been our right hand!

Now that you know Ari, I will share with you why I agreed to write this article. Besides raising awareness and giving chizuk to others in this situation, we, as a community need to have a better understanding and support for kids like Ari who are ‘mixed breeds’. Here is just one example – when choosing a summer camp for Ari where do I send him? Camp for kids with autism is amazing but cannot handle his medical issues; camps for kids with medical issues – one needs to be cognitively at an even level with the other campers. Camps for kids who are cognitively disabled are not equipped to handle the intense medical needs thereby making the ‘mixed breed’ like Ari… not here or there. This is our test at this point; finding where we stand in the world of special needs and the medically fragile. But for today, as of today, we are doing our best to give Ari the best of both worlds.  He is happy, he is lovable beyond! And most important he knows his place in our family – He is Ari Cohen the Brave!