I’d like you to meet Jesse. He’s an amazing six year old boy that has fought hard to be where he is today. At his 12 month appointment I told his pediatrician that I was concerned that he wasn’t even attempting to speak. I was told that he was a boy, he was an only child, and that he would talk when he was ready. The same thing happened at his 15 month appointment. At his 18 month check up, I was still concerned and also pointed out that his toenails were curved upwards. They looked like little cups. I was told that it was a normal part of development and to quit worrying. The doctor even waived his file at me and said “This is one of the healthiest kids we have in the practice! Quit worrying!”
Two weeks later, Jesse had a seizure while sitting in my lap on the living room floor. I called the doctor’s office and described what happened and was given an appointment with the first available pediatrician. We saw a doctor I had never seen before but he immediately agreed with the concerns I had about Jesse’s lack of speech. He ordered a full round of tests in order to find out what caused the seizure and put in a referral for speech therapy. Even at his speech evaluation, I was told there was no way he was autistic. Between 18 months and 2 years, Jesse declined developmentally. While there was some small progress made in speech and we had started using sign language to communicate, more and more behaviors were popping up that caused a concern. In September, my husband came from for R&R to celebrate Jesse’s 2nd birthday. While out to breakfast one day, we ordered Jesse a pancake and when I cut into it he had a total and complete meltdown.
At his next speech session, I told his therapist about the meltdown and showed her his toenails. They were curved upward because Jesse was toe walking. I remember her nodding and I knew it was time to push forward with getting the diagnosis.
It’s amazing how this all lined up for us. That doctor that I saw after Jesse’s seizure was a developmental pediatrician and an autism expert. Within two months we had completed the evaluations and been given the official diagnosis of “Infantile Autism“. I was told to immerse him in therapy and hope for the best but to be prepared for the worst. I ignored the part about being prepared for the worst and began to prepare for battle.
Jesse added ABA therapy, Occupational Therapy, Early Intervention, and also began a developmental preschool that included him in a class with typical peers. He quickly became the busiest two year old I have ever met.
I’ve had to learn to find my voice. Sitting back and letting things happen were no longer an option, I have a child that can’t advocate for himself so I had to learn how to do that. I’ve had to argue with therapists when I felt they were out of line, I’ve had to request meetings with principals and directors and wave laws around in front of them so they knew they couldn’t just let Jesse slide through the system. The picture I attached was included in a letter sent to Congress in a plea for them to include ABA therapy coverage for all military members. I have become an advocate for Jesse as well as the autism community in general and happily support others that are on this journey.
Jesse is currently in a mainstream kindergarten classroom. He’s reading, writing, doing math, has a quick sense of humor and the greatest laugh I’ve ever heard. He loves everybody, especially babies, and happily hands out hugs – even if you don’t want one. We are still using ABA therapy, speech therapy, and occupational therapy and he’s now the busiest 6 year old I know.
It’s important for you to know that he’s also the happiest 6 year old I know. He struggles with textures when it comes to food and clothing and he’s very sensitive to loud noises or crowded situations. He becomes over stimulated easily and doesn’t know how to properly bring himself back to center. He wants to be a friend to everybody and doesn’t understand when that feeling isn’t mutual. He wants to hug everybody he meets. He repeats scenes from his favorite shows at inappropriate times and he’ll talk forever about dinosaurs if you let him. He needs warnings when the situation he is in is about to change. He’ll learn quickly weather or not you really mean no if you say it so say what you mean and mean what you say. He claims to be allergic to homework and naps. As of right now, he wants to be a lion when he grows up – since he knows he is going to get “fur” and larger teeth, it just makes sense. He loves to run so much that they use it as a reward at school. When he finishes his math, he gets to run laps! He loves the beach, the sun, the sand — three years ago he wouldn’t touch sand, now he makes sand angels every chance he gets. He ate turkey on Thanksgiving for the first time last year, and yesterday on Easter he ate ham for the first time. His milestones might happen later than most, but they are happening and I know they will continue to do so.
But he’s happy.
If you are interested in sharing your journey with Autism to help raise awareness of the diversity of the Autism Spectrum Disorder, please email your story and pictures to april @ picturedmomentsbyapril dot com. Thank you!