My son Jackson is 14 years old. In his 14 years, he has learned very basic communication. I want (rice) milk. I want chicken. Push me (on swing or stroller). He can use a device to say these things, but he can speak them too. Those who know him well can usually understand. When he can’t be understood, the device helps.
Besides having autism, Jackson is medically complicated. He has had multiple surgeries, hospital stays, and medical issues. Jackson has a seizure disorder, colitis, chronic allergies, chiari malformation, low growth hormone, kidney surgery, a weakened immune system, and more. He is no stranger to medical professionals. Because he cannot effectively communicate, it is always a guessing game trying to figure out what is wrong. Usually a fever or behavior outbursts are the tip off. By the time we know what it is, it is usually pretty bad. Not knowing what is wrong with Jackson, if/when/where he is hurting, is one of the most difficult aspects of his autism. The heartbreak that comes along with knowing that my son is suffering and cannot tell me-- it can be unbearable. I am his mother, my job is to take care of him. When I don’t know what to do I feel like I have failed him.
We have tried for many years to teach him how to articulate pain. His speech therapists, his special education teachers, my husband and I-- we have all tried countless ways to teach him to alert us when something is wrong, with little progress. It is so hard for him, as is for many individuals with autism, to express something that can be so abstract.
Yesterday, Jackson was in a great mood. Happy, laughing, all I could ask for. When Jackson is happy, everyone is happy! It is January, and the New York weather makes it difficult to keep him occupied. He doesn’t like to be out in the cold, and so weekends are hard. I asked him if he’d like to go for a ride in my car, just to get out for a little. He got his sneakers, and then he replied with something I wasn’t sure I understood. I handed him my phone so that he could type it for me. This is what he wrote:
Huh? What does that mean? It didn’t make sense. Jackson was fine, no signs of sickness. He was in a great mood, eating, drinking, playing, all good. He must mean something else. I asked him again what he wants, same reply. His aide and I shared a confused glance, and she went to get his device. It has icons and categories and can make it easier for him to express himself. She gives him the device, and he automatically goes to the keyboard. He writes this:
I am so confused. I’m probing him with questions. What will the doctor check? Does something hurt? Jackson, what do you want? The answer remains the same. I. Want. Doctor.
Okay……. so I guess I’m going to the doctor. Of course it is the weekend, and off hours, so we can’t head to our regular pediatrician. But there is a nice pediatric walk in nearby, where Jackson went a few months ago for an ear infection. I feel silly going in with Jackson who seems perfectly well, but I go. I want to respect his request.
We get there, and they ask what is wrong. I explain that he is mostly non-verbal, but has requested the doctor on his device. I don’t think anything is wrong, but would like them to just check his ears for me. While we are waiting, he uses the bathroom. He comes out of the bathroom happy and jumping around. I think maybe he had a stomachache and that is why he asked, but still we wait to see the doctor. He’s eating his snack in the waiting room as we wait. The doctor remembers him from last time, and makes sure she talks directly to him, which makes me happy. She checks his ears and talks away. No infection, no fluid. Ears look good except for a little wax stuck in one, which she clears out. That must have been it.
She looks in his throat quickly and says it is a little red, let’s do a culture just in case. I don’t think it is necessary, but I’m happy she is being thorough. It takes a few attempts, but they do the culture and we wait. Me and my happy boy.
The doctor comes back a few minutes later and tells me that the culture is positive. Jackson has strep. Strep!!!
I am shocked. My eyes are filling with tears. Jackson knew that his throat hurt and that he needed to go to the doctor. He was able to TELL ME to take him to the doctor! I would have never ever known that he wasn’t feeling well that day. Nothing was different, nothing. Normally, that strep would have been there for days until it was a raging infection, until he had a fever, until he couldn’t eat, until he was miserable. Then I would have figured out that he needed a doctor, not knowing he had been in pain for days. But today, at 14 years old, my son told me for the first time ever, completely on his own, that he was sick. That something was wrong and he needed to go to the doctor. He had strep throat and he figured out a way to tell me.
For Jackson, this is life changing. Although he couldn’t articulate to me what was wrong, he knew that the doctor could help him. He felt pain, and he used his words to tell me what he needed. He advocated for himself. I am so proud. My heart is so full it feels like it is swelling out of my chest.
This is huge for Jackson, and gives me so much hope for his future.
Does this kid look sick to you?
I never would have known. But he did!!
Always have hope, my friends. Always.
Michele Iallonardi is mom to three incredible boys, Jackson, Bennett, & Luca. She is on the Board of Directors for the Nassau/Suffolk Chapter of the Autism Society of America, and is the Publisher of Hauppauge-Smithtown Macaroni Kid. Michele has a Master's Degree in Early Childhood Special Education. She lives on Long Island with her husband Ralph & their boys, and enjoys serving the autism community, busy days, and dancing in the kitchen. She can be reached at Lumardi@verizon.net.