The following is a personal story written by Juliet, an ambassador of MyAutismTeam, the social network for parents of children of all ages with autism. Below she shares the story of her family and her son Tristan. If you are a parent of a child with ASD, go to MyAutismTeam and connect with other parents who ‘get it.’ Thousands of parents from all over the country are here to share not only their stories, but their daily lives: the good days, bad days and the triumphs!
He was extremely colicky as an infant. Midnight car rides almost every night, he slept no longer than a couple hours, at most, during the day, and began digestive issues as young as two months old. Literally, my husband and I were tired and grumpy all the time hoping this stage would someday be behind us.
Tristan, now 4 years old, hit all his major milestones up until two years old, but there had always been something a little peculiar about my little guy. He spoke a few words here and there but nothing distinguishable to a non-parent. When Tristan was excited, he would jump up and down flapping his arms. And we just said to ourselves, “oh, how cute! He loves to watch football!”
At 3 years old, when most parents begin preschool preparation I was racking my brain telling myself, “I don’t think my little guy is ready. Actually, I know he is not ready.” My biggest concern and the anxiety he demonstrated the most was being around others – children, adults, and even family. Socially, I knew he was behind – way behind.
Outside of routine trips to the store ,such as Costco, refusing to be separated by Mommy and the check-out counter, or regular phrases such as “I’m scared” when approached by anyone other than an immediate family member– it was the sum of these situations that my husband and I realized we had to make something happen on our own.
I immediately met with Tristan’s pediatrician, I should note that my concerns were not new to her either, but I pressed it further and she supported our request. Our next visit was with a Pediatric Neurologist about an hour outside of town who instructed us to contact out local regional center. After some research of my own, I also decided to contact our local school district to get him tested for academic purposes since he was of school age (being 3 years old).
The tests and evaluations were moving on the fast lane, it was continuous evaluations for 3-4 weeks. Lucky me, and lucky for my son he loved puzzles and games. So he was having one party after another for a month. Final assessments came in both from the regional center and the school district within days of each other and both were in agreement that my son had PDD-NOS, known as Pervasive Developmental Disorder – Not Otherwise Specified. It was extensive-wordy diagnosis with an awkward title but we now had an official diagnosis for my son.
In my son’s case, he exhibited most of the elements of being autistic but because of the mildness of his characteristics he did not have Autism, but better put he had Autism Spectrum Disorder. We shared the diagnosis with the school district who then discussed possible therapies to help Tristan begin moving in the right direction. They laid out two possible therapy sites both using applied behavioral analysis (known as ABA), and even set up visits for me to the two locations. After the visits, it was clear which would be the best fit for my son.
In order to move forward with the ABA at Applied Behavioral Consultants, ABC School, they had to conduct their own evaluation of Tristan to create a personalized program to fit his areas of needs. Over a period of a month, ABC School finally concluded their assessments and they began Tristan on a “slow start.” A “slow start” just meant he would begin half day and gradually add on an hour or so until he was able to manage a 8am-3:30pm schedule at five days a week.
Let me tell you mom and dad – the first week was, of course, the biggest transition. Which meant every morning; I would hear my little guy declare, “no school Mommy, no school.” And for many days, I would do my best to console and reassure him that everything would be ok. Even though, I too had doubts. Not because I didn’t think we were making the right decision but more else that I too was scared as we were taking this journey together…blindly. As soon as I would drop him off at school, there was clinging to the legs, clothes, screaming, crying – some of that from Mommy too. Yes, the first couple days I sobbed as I held my daughter’s hand walking to the car hearing my son screaming from inside the building.
But all that eventually ended and now almost five months into his ABA therapy – my Tristan is doing amazing. He was evaluated for occupational therapy (it was recommended at the beginning of the school district evaluations but has improved drastically since then and so was deemed not needing occupational therapy at this time) and she had relayed that he was “the most developed child she had seen in the last ten years.”
Just over this last year, I have come to realize more clearly how blessed and gifted that my son is. Because of his love to learn, he has exponentially grown in his academics even at four years of age. And now loves school! In the fall, we enrolled him in a mainstream pre-kindergarten, so with the balance of both ABA therapy and pre-k he is doing wonderfully!
We are so grateful for the amazing specialists, teachers, doctors, and individuals who have had an impact, both big and small, in our lives to create this journey that we’ve been on with our son. Autism Spectrum Disorder has become a blessing in disguise and is a part of who my son is. And we wouldn’t have it any other way.
If you are the parent of an individual with autism you can join MyAutismTeam for free at http://www.MyAutismTeam.com.