It’s been 12 years since I brought home my precious baby boy home for the first time. The years have gone by so fast. As I look back on the years behind us, I get a little scared. I can’t help but think that the older he gets, the less time he will have me and my husband to take care of him. My son is autistic. Raising an autistic child hasn’t been easy. He’s come a long way in 12 years, but still has a long way to go.
My son is on the severe end of the autism spectrum. I didn’t know this in the beginning. He wasn’t diagnosed until he was five years old. We spent the first two years of my son’s life visiting specialists, being threatened by his regular doctor, and crying. A lot of crying. I also spent a lot of time isolated. It was difficult to go out in public with my son.
I can remember days and days of being alone with my son, no one to talk to. My husband worked nights, and slept during the day. We had a few hours together each day. My mother-in-law was living with us, but she worked during the day. I was living in a new town, no friends. It was me and my son. My crying son.
That is one thing that I remember vividly. Hours and hours of him crying. He would be hungry, but wouldn’t eat. He was, as I was told, “colicky.” I did all of the mom tricks. Wrapped a blanket around him and walked him around the rooms. Sang to him. Rocked him. Nothing would work. I just had to wait for him to cry himself out.
Then he would get tired, and wrap a strand of my hair around his fingers. Slowly, the crying would go to sleep, cuddled in my arms. That would also be the time that I could feed him. He would drink from his bottle while sleeping in my arms.
It took some time before I found out why he would refuse to eat while awake. During his well-baby checkups, the doctor would write “failure to thrive” on his records. She blamed me. Threatened to call Social Services. I told her to go ahead. If I was at fault, I wanted to know. If there was something in my home that was at fault, I wanted to know. She never called them.
I got lucky at one of the doctor visits. Instead of seeing his usual doctor, we saw someone new. She thought that there might be a physical problem creating this feeding issue. She sent us to an ENT. The ENT did a quick exam and had an answer immediately. My son was only breathing with one nostril, and that nostril was unusually small. The other one was completely closed. She said that it was why my son didn’t want to drink from his bottle. Doing so would close up his one nostril that he was breathing from. Luckily, he didn’t need surgery to fix this. Just time. Eventually, his nostril opened up on it’s own, and my son was breathing normally.
It wasn’t until my son was almost 9 months old that I really saw how different he was from other children his age. I knew he wasn’t meeting his developmental milestones. I was in denial. I kept telling myself he is fine, and just needed a little more time. He wasn’t crawling the way other babies were. He did a back scoot. He would use his head and feet to scoot around the floor on his back. He had been babbling, but stopped. He was manipulating small toys with his fingers and hands. I thought that was terrific, it didn’t even register that his actions were so repetitive.
My sister had a baby girl that was turning a year old. We went to visit her,(she lived in a different state), and it was like being hit with a ton of bricks. This little girl, my niece, was so mobile. She had no problem holding her head up. She looked at you when you were talking. She responded, by action, to simple communicative commands. She played with toys and was walking. All the things that my son didn’t do. I didn’t want to say it out loud, but I new there was something wrong.
I changed doctors a couple times, and finally found one that wanted to get answers for us. She sent us to specialists. There were long waiting lists, and one specialist would recommend another, and so on. In the end, my son ended up with having to have eye surgery and tubes put in his ears. His ears were clogged up to the point that he wasn’t hearing anything, and his eyes were not aligned properly.
After these were fixed, I was expecting to see changes in my son. No one gave us a diagnosis that explained why he was developmentally delayed. It was hoped that it was his hearing and eyesight that were the cause. It wasn’t. The developmental specialist that ended up seeing him diagnosed him as “Globally Delayed.” That was it. No reason why.
At two years of age, my son wasn’t talking, walking, or feeding himself. He didn’t make eye contact when we talked to him. He didn’t respond to his name being called. He was in his own world. Loud noises upset him. New toys that made noise would send him into a crying rant. New people were not allowed to hold him or touch him. Therapists came and went. Then, at 2 ½ years of age, he was accepted into a special daycare center. We had him on a waiting list for a long time.
Within 6 months, he was walking. I thought it would never happen. I was so shocked the day that I first saw him walking independently. My husband and I were in the living room talking. My son was in the other room, crawling around. I looked over, and he was walking towards us. I was so happy for him. If he could do this, he could do anything.
How many times have I told myself that over the years? Too many to count. How many times have I told myself that he will never learn something? Also too many times to count. He never learned how to talk. I don’t think he ever will. We have found other ways for him to communicate, but he has his preferred way. Make us guess. Or lead us to something, bring us something, smile, and laugh. He has a communication device that he doesn’t like to use, but he will. It’s a coin toss whether he uses it to communicate his actual thoughts, or is just selecting pictures to get us to leave him alone.
At 12 years of age, my son can dress himself, but can’t bathe himself. He can feed himself, but can not cook himself anything or fix himself a drink. He isn’t able to do most of the self-hygiene things a child his age should be doing. He isn’t able to write, but can fold a wash cloth. He will sit at the computer for hours looking at YouTube videos, but don’t ask him to type something into the search bar. We have a touch screen, and he uses that to navigate around the internet. He’s figured out that previous searches are saved, and where to touch to pull up a previous search.
With all of the progress my son has made, there are so many things that he can not do. Things that he needs to be able to do on his own. Things that he needs to be able to do in order to become independent. Things that his parents won’t always be around to do for him. This is scary for me. How in the world is my son going to be able to survive without us? Time goes by so quick. I just want to slow it down.
(Written as a guest post when I was taking a break from blogging. I’m so glad I am back. – update 7/5/12)