I don’t know why, I just feel it is time to tell this story. Blogs are self promoting places and since this is my place, this is the place I feel safest sharing this.
Sade: He was born in the winter of 2000. My first born. He came into this world perfect, 10 fingers, 10 toes and a head full of hair. He was such a cute little guy and looked like a little old man. It was love at first sight. It wasn’t long after we brought him home that the colic started, every night for 3-4 hours he would cry, nothing helped. I remember Stewart being at work (he worked nights and loooooong hours, thank you military) and just rocking him, crying right along with him. We bonded during that time, I felt such a closeness with him, the colic was difficult to get through but he was such a sweet little baby it didn’t matter.
He was always an independent baby, I joke now that if I hadn’t breastfed him I would have never gotten to hold him. He was also very stiff, we used to have to bend him to get him to sit down or put him in his carseat, he was in a constant state of erectness. As he got a little older little things started to stand out. When he would play he didn’t play like other children, instead he would line things up by size and color and if you messed up his line of cars or sippy cups there was hell to be paid.
It was around the age of two that my mommy sensors started to ping. I would take him to playgroups and feel jealous because there were children younger than him that could speak better, and seemed so advanced compared to him. I actually made an appointment with a psychologist to voice my concerns, I was told kids develop differently and to not worry about it, he was fine. But I wasn’t completely convinced, this was a toddler that would figure out the child locks and escape, would push out the screen and climb on the roof, that if you let him loose in a store would run off never to be found again. He once got loose in the commissary and they had to close it while the whole store searched for him, we found him hiding on a shelf in the bread isle. But, the doctor said he was fine so I pushed my worries and concern to the back of my head and started to think there was more wrong with me as a parent.
Fast forward a little, we welcomed Ethan into the world and then moved to California. Not much changed, his vocabulary was still off. He could identify every dinosaur in his dinosaur encyclopaedia but could not ask for juice. He could do a difficult maze without issue but couldn’t hold a fork. It was then that a friend of mine, someone I admired and looked up to greatly, pulled me aside and told me that he needed to be evaluated. I was relived to know that the issues weren’t just in my head. She gave me some numbers to call and we got the ball rolling. He started speech therapy a couple of months later.
During this time it was kind of weird, they tested and evaluated him. I watched my younger son Ethan’s vocabulary surpass that of my older sons. Ethan understood and learned yes and no before Sade did, it was weird for lack of another word. We were later told by one of Sade’s therapists that having Ethan was the best thing we could have ever done for Sade because it gave him a peer to learn with. After several months of testing and therapy we had a big meeting. In this meeting they gave me tons of information on something called Pervasive developmental disorder. I had never heard of it, I had no idea what it was and said so. The speech therapist quietly said “its autism”. Immediately I got defensive, it can’t be, he’s social, everyone is his friend, he can make eye contact, he was my little boy and there couldn’t be anything seriously wrong with him there just couldn’t!
I took the paperwork she gave me and went to the library, I checked out books and googled my little heart out. I quickly learned and realized that it described me son really well. I set up an appointment with our pediatrician. That was a funny meeting, he looked at Sade, said “he just made eye contact so it can’t be autism”. I gave him some of the reading material the school had given me, he looked over it and admitted he knew almost nothing about autism and sent us to UCLA.
UCLA: It took us nearly 9 months from the time we made an appointment to get seen. During this time he continued therapy at the school for speech and adding on social skills and occupational therapy. Our first appointment was about 2 hours. My mind is kind of foggy about that appointment, I remember on the way home Ethan being very sick and it turning out to be pneumonia, I think I blocked out that day because it was so stressful. What I remember though was taking him into a room and us watching from another while they played with him talked to him and then did some other tests. Then we went home and came back again 2 months later. They did a little more testing the second time and then came back again 6 weeks later.
The last appointment, we go into a little room and they sit us down. The doctor looks at us and says “you guys already know right? You aren’t going to be surprised when I tell you he is definitely on the spectrum?” She then hands us a 17 page diagnosis outlining his disorder.
It was then that it all became real. I had two very conflicting emotions, the first was relief, I wasn’t a horrible parent that couldn’t “control” my child, I wasn’t a failure like I had thought, there was something different about him that made him behave in curious ways. And two, I grieved, I got this diagnosis and I realized that my dreams for him had changed. No longer was it when my son gets married, but if he gets married. Not when my son graduates from college, but if he will graduate from high school like other kids. I realized my son would never be the president or a number of other things that I had always hoped for, my dreams for him were gone. I read this poem called Welcome to Holland over and over again reminding myself it was all alright, that things weren’t bad, just different.
Sade at this time was 3 and a half almost 4. He had meltdowns that would last for hours on end. He would injure himself yet seemed indifferent to pain, he even broke his own arm during a meltdown. He barely slept, we used to have to drive for an hour nightly to get him to sleep only to have him up at 3 or 4 in the morning after not going to sleep until midnight. I learned how much patience I really had and it was tested over and over again. There were times I would shut him in his room to avoid him hurting himself or anyone else and then just sit by his door crying. I spent a lot of time of my knees praying for help and guidance just trying to get through a moment. His communication was improving though. I still remember the first time he told me he loved me, he was 4 and a half and it was after I tucked him in and told him I loved him and he said it back. I remember looking in his eyes and knowing he understood and meant what he said. That moment made every difficult moment vanish, it made everything, the tantrums, the painting the walls with poo, everything worth it.
We were in Florida about this time and I honestly cannot say enough good about the school we had there. Our IEP meetings could last 2 hours because they were so thorough trying to make sure he had everything he needed to succeed. He had a tutor that would follow him around and help him in anyway he needed. They placed him in an inclusion class because like most kids on the spectrum he was a mimicker and we hoped he would mimic the other children in his class.
It was in Florida that I watched him blossom. He seemed to grow so quickly and learned quickly as well. We had set backs though. He had panic attacks over things and ended up on medication for them. He still had a temper and once called 911 to tell on his dad because he lost his Nintendo DS (we still get a giggle out of that). His social skills were still lacking, we would have play dates and he would play for a little while and then go and play by himself. He still does this actually. He would have sensory overload often and would meltdown. Water is one thing that has always calmed him down and living 5 minutes from the beach was an amazing thing for him. One of the big milestones came in Florida. Ethan was around 3 putting Sade at 5 and was throwing a tantrum over not being able to have another Popsicle (the horror). He had thrown a massive tantrum that lasted for a long time. I got busy doing house work and noticed he had calmed down, I went and checked on him and Sade had gotten a Popsicle for him. At first I was upset, I had just spent way too long listening to a tantrum over the damn thing and he had undone it all, but then it clicked Sade had shown empathy, something he had never done before and he did it naturally. It was an amazing feeling of soberness that I won’t ever forget.
While in Florida we had our third boy Drew. It was funny watching Sade interact with Drew. I brought home this little baby and Ethan was so snuggly with him, holding him, rubbing his head when he cried, Sade was awkward. He would poke at him or pinch his cheeks, he didn’t know how to react to a baby we had to teach him something that should have come naturally. He did learn though and now is quite good with him.
When he was 8 we left the military and moved to Utah. Sadly the schools here weren’t like the one we had in Florida. They immediately took him off his extra therapies and I watched him slowly fall behind. We moved again and into a better district, they put him back on his therapies but he still has some catching up to do, he seemed to lose a year during that time, I’m still a little bitter about it.
It’s been really cool to see the kind of person he has become. He is 10 and a half now. Long gone are the meltdowns and injuring himself. Now we get back talking and obsessing (the back talking I realize, is completely normal). If we tell him no on something he will pester you about it for weeks, constantly, obsessing over something asking you about it over 200 times a day, no exaggerating there. An example of his obsessing is when he learned about dust mites in school, he was terrified of his bed and we kept finding him asleep in the bathtub because he was so scared of them. Buying a dust mite mattress protector helped thank heavens. Puberty scares me, a lot, I’ll cross that bridge when I get there. He has a great personality and a quirky sense of humor. People after learning he has aspergers remark that he seems fine. And he does, most of the time. We call him the poster child for early intervention. There are many times when I forget he even has aspergers but then he does something that reminds me again. He has overcome so much to get where he is now, he has worked his little behind off to be who he is and I cannot be more proud of him.
He knows he has apsergergs, we told him about a year ago when he started to notice he was different. Now he’s actually pretty proud of it. When the girl from Florida was lost in the woods a few months he watched the news obsessively and kept saying how she was like him. He knows things other kids don’t. He knows about the weather, sea-life and dinosaurs. He won’t read fiction unless forced to for a book report. He loves facts and information.
There are little things that remind me, like that he will only let me kiss him on the cheek for bedtime. He has set forth rules about his personal space. I don’t cross over into his space, I let him make the move, this is what he has asked me to do. And really, its okay because we will be walking in the store and he will hold me hand or sit next to me on the couch or just tell me one day that I’m the best mom ever. I’ve learned to make it work, affection on his terms and honestly it means more to me when it happens. Lately he is a lot more forth coming with affection, hugging relatives and holding hands, it warms my heart. We have ups and downs, peaks and valleys. Aspergers is a roller-coaster, one moment you are on the top looking down anticipating the thrill and then suddenly you at the bottom wondering how you got there and how you can get back up again.
It is a journey we have been on and not even close to complete. It does seem to get easier or maybe we are just more comfortable with it all. I’ve been asked if I would cure him if I could and I can’t really answer that. I honestly don’t know where the Aspergers begins and my child ends. I love his quirkiness, and his vast knowledge of all things Star Wars, dinosaurs and the weather. I look forward to the journey he has ahead of him. At times it seems he has to work twice as hard to get half as far as other kids his age, but he puts forth the effort and amazes me at the things he can accomplish. I hope that I can help others that are on this journey, that some how our experience can be an inspiration to others. If any of my 12 readers ever need an ear or advice I will do my best to help because we are in this together and without support we won’t make it.
Side note: I realize Sade doesn’t have typical Aspergers he is more PDD-NOS but for ease of explanation and his level of being very high functioning, both us and his psychiatrist consider it aspergers. Also I realize I am probably missing many important parts to this story but its getting long, I may add to it later.
