I have never really posted a good account of how we got started on this journey, and at this point I think it would be helpful to the new visitors that are coming to the blog. I suspect that many people are coming after watching the coverage on NBC and asking themselves, “could my child be autistic”. I write this with you in mind.
My husband Scott and I gave birth to our oldest son Webster in September of 2000. He was born 7.5 weeks premature and spent the first month of his tiny life in the NICU learning to breathe. Despite his rough start, he grew to a healthy little guy, and when he was only 9 months old we discovered that, Surprise! We were having baby number two!
Given the problems I had in going to term with Web, everyone was quite alarmed when I began having contractions with Chandler at only 5 months. I was ordered to bed and put on Terbutaline. After several weeks of not moving, I developed gestational diabetes and needed insulin to control it. I managed to stay pregnant to 36 weeks (to the day) and Chandler was born perfectly healthy.
At three weeks old, just three days after being vaccinated, he developed colic, which I have heard is common with ASD children. The only thing that soothed him was white noise, so I made a sound file with vacuum cleaner noise and looped it, and then would set him next to the computer speaker and turn it up until he stopped crying. He also had trouble controlling his body temp and would get flaming hot even though he was not really sick. We would strip him naked and cover him in baby wipes and call him Fire Baby.
All of this subsided after a while and until about 18 months he was a happy quiet baby who made lots of eye contact, played with his brother and sang the theme song to Maisy.
Around 18 months, on Halloween to be exact, I had a really hard day with him, and couldn’t really figure out what the problem was. I am fortunate to have a great group of girlfriends, 7 of us were pregnant at the same time and all the kids were born with in 6 months of each other. Chandler being the oldest of the pack.
We decided to dress the toddlers up in costume have a little parade through a retirement home near by, much to the delight of the elderly residents. It turned out to be a rough day for me. When all the kids happily followed their moms down the hallway, I was chasing mine who was heading out the door. When all the kids stayed in the day room where their mothers were, mine went down a hallway full of empty rooms and ran into the last door he could find. When I caught up with him it turned out that there was a bedridden man in that room who was quite tickled that the little alligator had paid him a visit. I figured God had told Chandler to head down that way so that he could have a little holiday cheer.
The rest of the day was exhausting. He would not hold my hand and walk with me like the other kids did, he would not let me carry him like the other kids would. Chandler wanted his own special tour of the place, and he didn’t really care if I came with him or not.
Afterward, we all gathered outside for pictures. I couldn’t hold him still for them and eventually gave up trying to wrestle the alligator.
That night we went to a party at the neighbors. There were a bunch of older kids running on hardwood floors, and things got very loud. As things got louder, Chandler got more upset. While his older brother was running in circles and laughing his head off with the other children, Chandler eventually became completely distressed and I couldn’t comfort him, so I took him into the back bedroom. As soon as I shut the door, he took a deep breath and flopped onto the bed as if to say, "thank God we got out of there". It was clear that he could not handle what was going on in the living room. Later that night when things calmed down, we tried to take a picture of our boys with the neighbor girls, but despite them being the only ones left in the house, he just could not handle it.
After Chandler's diagnosis I went back and watched home videos to find out when things started changing for him. We had a gap in our video's between my older son's birthday in September and Halloween. It was clear that he had changed sometime during that time. After watching the videos I checked his shot record and found that Chandler had been vaccinated just before the gap in the video, five weeks before Halloween.
From then until Christmas, I noticed that he was harder to handle than my friends kids were when we were in public, but kept telling myself not to compare him to others, or to his brother. I was getting worried that his speech was not really coming along. Scott and I had agreed that he was going to be a quiet guy like his daddy, and we would have to take special care that he did not get overlooked. Especially when his brother had such an “in your face” style when it came to his own needs.
We did and so we always knew what he wanted, even when he didn’t “ask” for it.
I am a former family therapist. I have an M.S. from Johns Hopkins in adolescent and family therapy and, I had one autistic client when I was doing social work in the foster care system in Baltimore during my schooling. Although not specifically trained in treating autism, I was certainly more than familiar with it and qualified to screen for it. In January it started creeping into the back of my mind here and there, but I told myself to quit diagnosing my son and let him progress on his own time. (I have tendency to diagnose and classify my friends and family, my own little obsessive game) At the end of January, I dropped him off in the nursery at church and as I was walking in the door I thought, “please cry when I leave so I know you are not autistic”. He didn’t cry. I told myself not to be paranoid, that he was probably fine, but if he was still not speaking more than the three or four words he had by his second birthday, in March, I would look into it.
In February my friend Julia, Chandler’s god mother, was over for a visit. She began to talk to me about how much she loved Chandler and wanted to connect with him, but that she was finding it difficult. She said, “I have a friend whose son was having a few problem, but they got him some extra help and he is doing great now”. I thought, “Shit, she sees it too”. Up until then no one had mentioned that they thought anything was wrong. I asked her if she was talking about autism and she said, “Oh, are you already thinking about this issue?”. I told her that I was taking him in for his 2 year appointment in a month and was going to see if his doctor saw any cause to worry.
It was a casual conversation, and she handled it very gracefully, but when she left I felt like I had an elephant sitting on my chest. I knew sitting on this any longer would be irresponsible of me. So I got out my DSM and read the diagnosis for Autism, then went online and pulled up the screening questionnaire that docs use when they suspect it and watched him very carefully over the next two weeks and every day felt more panic and depression. I waited a week to mention things to Scott, and even then did so really slowly. He was not worried, and reminded me that his mom kept saying that, “Scott had done that when he was a baby too”, about almost all of Chandler’s quirks. And since Scott was fine (just very, very shy growing up) Chandler would be too.
I talked to Webster’s god father, whom I trust immensely, and as he is a doctor, asked his advice on proceeding. He suggested I not mention my concerns to Chandler’s doc when I went into the appointment initially, and see what the doctor picked up on. That way I could know that he would have some objectivity and if he suspected it, I would know that I didn’t plant it.
Well we were only in the office about two minutes before his doc started asking me the screening questions for Autism, which I answered with specific examples rather than generalities. He said that he would like him to see a specialist that evaluated children’s speech “and other things”. He gave me her number and asked that if I had trouble getting an appointment, to call him and he would make sure I got in quickly. Neither of us mentioned our autism suspicions.
I decided at that point, I was not going to be the first one to say the “A” word, to any of the professionals, until they said it to me.
I called her that afternoon, and although her voice mail message said it could take up to a week to get a return call and a month to get an appointment with her, she called back that afternoon. She said she had talked to the doc and she had a cancellation the next day and wanted to see him. She asked me questions that I answered again with specific examples, and at one point in the conversation she said, “it sounds like you know what we are talking about”. I answered that I was a former therapist and familiar with problems that some children had and left it at that. Then there was a long awkward pause, as I am sure she knew that I knew, but didn’t understand why I didn’t finish up the thought. But I was determined not to call it Autism until they did.
So we went in to see her the following day and after about 20 minutes with him, she sat me down and began to talk to me about his development problems, his speech delay and that he seemed to be lacking some of the basic skills that lead to speech. She again stopped and asked me about my therapy background, and gave me the chance to tell her I suspected Autism, rather than her having to drop the “A” Bomb on me. But I still let it be awkward rather than lable him myself. So she finally got to the place in the conversation where you tell the client what kind of therapy that “autistic children benefit from”, and my heart just fell into my stomach. Even though I already knew, I still wanted her to say it was his hearing that was defective, not his brain.
I managed to keep it together until I got to the car, then spent a long time sobbing. I eventually went to the store and bought the book that she recommended and went home.
When I came in Scott asked me how it went. I couldn’t really answer him, so I just put the book on the desk in front of him and started crying. He gave me a hug for about a second and then started acting strange for him.
You see no husband in the history of marriage is as good as mine at taking care of his wife when she is sad. He should teach a class on it. No matter my level of distress, Scott can absorb it and it doesn’t rock him. He usually just holds me until I am better.
But at this moment, he gave me a begrudging one second hug and said, “I am gonna go hug Chandler” in a very strange tone of voice and left me sobbing on the couch. At that moment I realized that Scott had gone bye-bye. I fortunately had the presence of mind to make the decision that I would just have to be OK with whatever he did over the next few weeks seeing as he was much less prepared for this diagnosis than I was.
He floated around in a haze for a couple of days, and when I asked him his thoughts on how we should proceed, he couldn’t really answer. A few more days went by and I told him that I was starting to make decisions for Chandler with out him, and I wanted to give him a chance to give me his input. He said that he still couldn’t wrap his brain around the whole thing, and that he trusted me to make the right choices. He just spent a lot of time hugging our baby.
Somewhere during the course of the first week we got into a conversation that again compared Chandler to his daddy. It struck me that over the last several months I had been saying that the two were so alike, so that if Scott was normal, then Chandler must be normal too. Turns out that they are so alike because they are both on the Autism Spectrum. I met Scott in high school when he was 15 and terminally “shy”. He was sweet, but awkward and a bit nerdy and seemed to talk at people more than with them. He had a big crush on me, but he was of little interest to such a social butterfly as I.
We didn’t date until 10 years later. I had not seen him for 3 years and was surprised at what a bright, well-balanced, good looking man he had become. A very different guy than he was at 15. I always just thought of him as a very late bloomer.
The more we talked, and looked at Scott through the ASD lens, the more clear thing became. Eventually I went to bed and he stayed up all night reading everything he could on children and adults with Autistic Spectrum Disorders. In the morning his said his whole life made sense all of the sudden.
It still took him another two weeks before he could join me back in our world. I didn’t press him, just asked how he was doing and let him alone to process, then one day he re-engaged and started talking with me about what to do for Chandler.
It has been a year since then and it has been quite the emotional roller coaster. I think it was only last month that I started to begin to feel normal, but I certainly don’t feel all the way “normal” yet. It is a really hard truth to balance.
It is very hard not to live in the past and think, ‘If I had only ______, then he would have been fine’ and not to worry about the future, Chandler’s life, the effect on Webster, our finances, our marriage and on and on. The only way to keep from being overwhelmed is to just deal with Today. To trust that God has made Chandler, and all of us, just the way he wanted us to be, and do the best we can for Today.
Ironically, the best teacher on how to do that is my beautiful son, Chandler. One of the gifts of his autism is that he is always “in the moment”. 5 minutes ago was so 5 minutes ago. An hour from now is not even on his radar. He does not regret, and he does not worry. He is just happy to be jumping up and down.
We are so blessed to have a son to remind us of the joy of living.