The Beginning

This is an excerpt from an email I wrote to a friend who was wondering how we knew about Jack's autism. Someday I'll elaborate on all this but I just wanted to get it out here for now. 


I first began thinking something wasn't quite right around 6 months of age. I really didn't know, Jack was my first kid so I thought I was just being crazy. He would do this thing where he would ball up his fists and shake his whole body. When I first saw it I was scared he was having seizures. But he wasn't. And the dr. said not to worry about it. As Jack got older he just didn't play with his toys like I thought he was supposed to. Instead he would put everything in perfectly straight lines and just stare at them. He wasn't very interested in toy cars, but when he did play with them he was fixated with their wheels, just watching them spin for long periods of time. He never looked us in the eyes, often just staring off behind us. He would zone out, sometimes staring at the wall, and be completely unaware of anything going on around him. Including us. We knew he could hear us calling him because often times noises would completely freak him out, sometimes noises we could hardly hear. It was entirely confusing. When we left DC my pediatrician kept telling me that they couldn't test for Autism until the age of two (at that point I had begun researching on the internet and was fairly certain that was what we were dealing with). Jack had only a couple words that he would say over and over and over again, didn't call us anything (no mommy or daddy), and spent much of his time alone playing by himself, lining his toys or his favorite, lining up all of his shoes perfectly in order by color. 
After we got to Hawaii I was bound and determined to get some answers. After seeing several pediatricians at our clinic on base I was finally able to obtain the referral I needed to see a developmental pediatrician. The most wonderful and scary thing I had ever done. After all, this could mean that this was a reality. It took about a month, and about 4 meetings but we finally got the diagnosis- just as I suspected, Autism. At that point Jack had about 10 words but they weren't used correctly and often were just repeated over and over. He would echo us but very rarely used any sort of spontaneous language. It was hell at that point. At two years old kids absolutely know what they need and want and having no language or ability to convey it resulted in massive tantrums. Sometimes completely out of control. The day that cemented my reality actually came right before our final appointment when we received the diagnosis and we had been in the boys' bedroom and Jack went off. He screamed, hit, kicked, ripped at my clothes and face for close to an hour. I was home by myself so I had to put Liam in his crib (screaming because he was totally freaked out) and bear hug Jack so I could try to calm him. Eventually we both collapsed into a heap on the floor, him quietly crying in exhaustion and me crying out of complete defeat and desperation. 
Once we got the diagnosis things took awhile but we hooked up with Early Intervention and had all sorts of assessments done. We found out that Jack was about 15 months developmentally (his highest score was 20 months and lowest about 10 months) at 25 months old. We immediately received a 'skills trainer' that came in each day for 2 hours and worked with Jack on everything from beginning to use sign language until he began gaining words to shapes, numbers, identifying objects and so on. We also got physical therapy, occupation therapy, a speech therapist, and a preschool teacher. We had a huge team but we were so lucky to have them because from there we were able to pin point what we needed to do and how to do it. 
It was a long road (which we're still very much on- and always will be) and things always get worse before they get better. But today Jack is an incredibly brilliant 3.5 year old. He's in a special education preschool now where he will be until he turns 5 and can go to kindergarden, at that point we'll decide (along with the school) whether Jack will be put into a regular classroom or continue in special education. We're incredibly fortunate that our insurance company covers ABA therapy and we receive a tutor for about 2 hours a day after school. He continues to gain ground everyday and I'm so in love with this kid!! I wouldn't change him for the world, although Autism is something he (and us) will struggle with for the rest of his life it's also been an incredible blessing. He's the goofiest, quirkiest kid, but I wouldn't change him for anything!