The hard part about the early stages of developmental delay is that, if you are a new parent, you really have no idea what is happening. We turned to friends, family, and even our pastor for help. We heard a number of different thoughts on the subject, as everyone is free with the advice when it doesn’t involve them.
On delayed speech, we heard:
“Oh, he’ll grow out of it. Some kids develop more slowly.”
“Just leave him alone and he’ll be fine. Let him grow in his own way.”
This next one was my personal favorite.
“Well he doesn’t need to speak because you do everything for him.”
Right. That one made so little sense I didn’t know what to say. Mostly, though, I tended to believe people like this in spite of my concerns. My wife wasn’t satisfied with those answers, and kept digging. I am a go with the flow type, so tend to take things as they come. It sounded reasonable to me that my son might need to grow a little more to hit this milestone, but it didn’t make sense to me on another level because he met or reached his other milestones early. It also bothered me that he could label with words, but not form sentences. I am an avid reader, and the written word is literally one of my favorite things in life, so the thought that my son might not share this love was unbearable to me. That was probably the start of my questioning, although it was on a somewhat subconcious level at that point.
There was also the sleep issue. We tried all kinds of ways to get him to sleep in his own bed. We tried the “Ferber Method” which is basically ignoring your child’s needs until he gives up. I had some problems with it, even after reading the book, and my wife really had problems with it. Still, we were desperate so we gave it a try. After a few nights of hearing him scream himself hoarse, we decided that the Ferber method was not going to work. One of our pediatrician’s nurses suggested taking him back to bed every time he came to our bed. I did that for about 3 nights, until my wife and I were so delirious from lack of sleep we just let him sleep with us. That fight went until after he turned 3, so you can imagine how hard it was to handle things during that period.
Raymond’s diet started changing too. He had always loved milk, but was going through over a gallon every 2 days. He also ate cheese like it was going out of style. However, we couldn’t get him to eat fruits or vegetables anymore. Raymond ate pears, apples, bananas and grapes shortly after we started him on solid foods. His grandmother would eat fruit with him every day at lunch, and it really hurt her feelings when he stopped eating fruit with her. It was a nice healthy tradition, and she couldn’t figure out why he had changed. We talked to our pediatrician about it, and she told us it was normal for kids to go on food jags, and to quit eating foods they liked during this time. We agreed with her after our visits, but we kept coming back to it because it didn’t seem right. We both knew he needed more nutrition, but didn’t know how to get it in him.
Finally, at Raymond’s second birthday, Kelly’s sister took her aside and talked to her about speech delays. As I mentioned in an earlier post, my wife and I fought about it, which is our method. Then we talked about it, and finally called PE-ID for an evaluation. The intake officer told us point blank that we needed to expect to hear that our child had autism, and that sent me spinning. I literally felt the rug get yanked out from under me, and the first thing I tried to do was put the rug back.
In hindsight I can see how big an asshole I was. I was irritable, defensive, hurtful to my wife and downright miserable in general. However, I felt like I was fighting with my wife for the future of our son. What I was really fighting for was the future I had imagined for our son and our family. I became somewhat withdrawn in social situations, which was a distinct drawback since my job requires a great deal of social interaction. I felt so down that I couldn’t face these people, and it made it really hard for me to do my best work. On the other hand, what I did excel at was research, because I could throw myself into it and really get out of my life. That was really what kept me sane, I think. Work, at least some aspects of it, was a haven for me to get away from it all. I did do a good job for my clients, which still astounds me. I guess my work ethic is stronger than I thought. However, its hard to focus on selling real estate when your son has a problem that no one can give you a good answer about.
We continued vaccinating. I know, we had our convictions and we shared them time and time again with our pediatrician, but she continued to defend the vaccines and the schedule. She gave us untold hours of advice on how to deal with the sleep issues, the feeding issues, and the language. After the autism statement was made, we took Raymond to see her the next day. Her statement to us was “He does not have autism. He has a developmental delay, but this does not seem to me like autism. Normally autism has physical ailments as well, like poor diet and digestive issues, which he doesn’t have.”
However, his diet was getting poorer. Also, we began having problems with his stools. They began to vary between super hard and almost constipated to loose like diarrhea. I know some folks don’t like “poop talk” but it is an essential method of determining gastro health. Even today we check Raymond’s stools to see if there are any issues. We were watching the autism unfold and nobody would tell us about it! Naturally, no one from PEID was going to say the word “autism” to us again. My angry phone calls made sure of that. Even after we enrolled him in the Pre-K program in our local school system neither the teacher nor her aids would mention autis. When we asked about it they said “Well, he has some delays but we don’t diagnose anything. We’re teachers, not doctors.”
Pre-K was a good thing for Raymond. We went through the eval process with the school and felt really comfortable with the teachers. Raymond responded to them well, which was more than he did with most folks. As he started attending class a couple days a week, I was happy that he had opportunities to be social. That opportunity was an area we felt we had really let Raymond down.
Kelly and I both felt guilty, and partially blamed his lack of speech and social interaction on ourselves. He wasn’t in day care, so had no opportunities there, and we didn’t really join a play group. Luckily, when we realized he needed that boost I found a group of friends who had already formed one. We began going to that every week, and it was really one of the few social situations where I felt comfortable. All the kids were around the same age, and since they were in their twos it was too early for the bullying or cliquishness common in elementary school. Raymond again did well, although he didn’t play “with” anyone. He was still only doing parallel play, not interactive or shared play. That really bothered us.
As we were doing these things to help Raymond, we were also learning how to talk to him in order to elicit language. First with PEID, and then with Raymond’s Pre-K teacher, we were taught to create obstacles in order to force language. This is somewhat counterintuitive, because as a parent you want to help your child. However, with a language delay, one needs to inspire the child to use language to overcome obstacles. This was an important concept, and one that would really help us break through to Raymond later on.
I’m going to stop here, as I feel like this is a pretty long post. Let me end it with some of my personal emotions during this time. When I was with Raymond and he was progressing, it was great. That and being immersed in work were my happiest times. If not, I was somewhat surly, argumentative and annoyed. I didn’t want to believe what I knew in my heart to be true. I was drinking every other night just to get to sleep, which naturally made me more irritable. I built a tower of denial, and wondered how long I could live in it. It was the darkest time in my life.
