I have gotten some comments on the blog I posted about Autism and Joy in particular touched me. I do not claim to be an expert and there are people out there who have been through hoops to get their kids diagnosed. There are parents that have children who live with severe Autism. My story is one of hope and I wanted to tell it in hopes that it might help Joy and others like me. I will probably be long and of course I am only writing it because I wanted people to know what it is like to deal with the unknown. To have to face the truth that something is terribly not right, but you do not know what to do.
My boys are triplets and were 9 weeks early. I tried 9 years to have kids and two miscarriages later I was blessed with my boys, I had a hard pregnancy and was on bed rest for 10 weeks before they were taken early because Ethan was not thriving.
Matthew seemed fine as a baby. I noticed that he had low muscle tone and was real loose and floppy. He was the first to roll over and the first to crawl (well sort of). He army crawled and as the others learned to do it on their hands and knees, he never could. Those were the last things he ever did first. They began to sit up without props, but NOT Matthew (he could not seem to hold himself up). They began to pull up on furniture and hold on about 10 months old, but Matthew was just starting to sit up unsupported. They all said words like (bye bye, momma, dada, bite bite). At 12 months they were walking along the furniture but NOT Matthew. At this point I was getting worried and EVERY doctor told me that they looked at them by there corrected age (subtract how premature they are until age 2). Matthew was a little behind for a 10month old….at 12 months old. At 14 months Jacob and Ethan let go and started walking….Matthew was not even pulling up on the furniture, something the other 2 started 4 months before. The doctor humored me and asked a physical therapist to look at him. She said he was delayed BUT because he was born 2 months early there is room for this to correct itself. The child who had never crawled on his hands and knees DID that day for her. One time, just to make me out to be a paranoid nutcase. She said at the beginning of October, “If he is not walking by Halloween call me”. One week later he pulled up on the furniture and a few days before Halloween he let go and walked. SIGH….RELIEF…..JOY!!!!!! I WAS over reacting after all. Or was I?
For a brief moment in time I was happy and the world was right. I had become so aware of everything Matthew did or did not do that everything was a comparison now. If Jacob and Ethan did something Matthew was about 2 months behind them. Other things started to creep up though. He never slept great but now he was waking up at night and banging his head into the baby bed while humming. I mean hard, like someone was banging on your front door with their fists. All night long I was up and down, at least 5 times from midnight to 7am. I would talk to him, change his diaper, and put him down and within 45 min he was doing it again. While all of this was going on I noticed that he stopped talking, the more I noticed Ethan picking up on words the more I realized Matthew had stopped saying anything. He would cry, throw fits and hit his head on the floor or a wall, and I did not know what he wanted. He could not tell me and I went through a process of elimination every time he did that. I would check his diaper, get him some water, a snack….anything I could think of until he found what he wanted and stopped. I noticed he would not eat any foods that were textured(chicken if it was stringy, rice, oatmeal, anything what was not smooth, or anything that was sour or tart). He was scared of the mixer and hair dryer ( he literally went screaming in the other direction and the sound of any loud noise, Into a corner and covered his face and ears and just cried). He looked like no child I ever saw, he had real fear on his face. He liked cars and would lay on the floor and watch the wheels as he rolled them in front of his face…..for hours. He did not respond to his name and would not look at you unless you held his face to yours and forced him to look in your eyes. All or this was taking shape from 12 months to 17 months. I noticed a lot of things started at about 16 months, the month after he started walking.
At 19 months I changed doctors, and the first visit he did not say “He has a corrected age of 2 months, he is fine”. He listened and when I told him I thought he was Autistic he did not flinch, nor did he say he wasn’t, nor did he encourage me in the idea. He said to me, at this age it is very hard to ACCURATELY diagnose a child, but he has to have language. He ordered speech and occupational therapy for him. He told me to contact TEIS, which is Tennessee’s state run early intervention program. I thought finally I will figure out what is wrong with him and get some help. That was in February, by May I was still playing tag with the case worker and by July I was real pissed off. He had evaluations by the therapists in June and they were bad. At 23 months I was told my son had the occupational skills of a 12 month old and the speech of a 10 month old. His hearing was fine, perfect, better than an adult, hence the loud noises bothered him. OMG I cried and cried. He was a year or more behind and every day counted, but no one was doing anything. Six weeks or so after that evaluation I received a call from one of the therapists that evaluated him. She said we have sent the evaluation and I just wanted to let you know that there is nothing we can do unless the case worker refers him. I was furious. I had been waiting on her, she would not return my calls, when she did it was always excuses about paper work and junk. I called her supervisor and was not pleased with her either. I told her I wanted that woman off my case and within 2 days another worker contacted me. She had his therapy started the next week. I went 2 times a week for 1 hour a day for integrated speech and occupational therapy from August to December of 2007. They were wonderful with him, and some days he participated and some he would not, but they were wonderful.
I remember other things about Matthew as well and this is a good place to talk about them. Matthew is a stubborn kid. Half of the time you would think he CAN’T do something and then the rest of the time he just WOULDN’T do something. I would tell him not to do something and he would look at me out of the corner of his eyes, smile and slowly reach to do whatever I said NOT to do. Them, quickly he would do it and laugh or take off running. The one Autistic characteristic Matthew never has seemed to have is unloving, he loves to be cuddled and loves to be the center of attention. He has always been happy, almost too happy. Everything is a game to him, NOTHING is ever serious. It is almost like he is missing a part of his brain that tells him things are inappropriate. He is loud and animated most of the time and if you want to hold his attention you have to be animated and silly, then he gets to laughing so hard he still is not paying attention half the time. Matthew is sweet and caring and good to his little sister most days. He is selfish too though, he will not share and we went through a long phase of biting, hitting, and kicking (every time he did not get his way). Everyday he surprises me, he is always different, Moody or happy, to never know what you will get.
In December of 2007 I learned that Matthew had gotten a spot in Signal Centers, a school for special needs. I was so happy. He would get therapy there and it was worked in with his play and learning. He would be around some other kids. Some things I had trouble with were, it was only 2 days a week, from 8 to 12. I thought how will that help him, he should be there more. The families were low income (as was I, but still it is hard to not be able to afford private care). The neighborhood was not great. He had never been taken and left before without me. I worked but my mom comes here to watch them so his routine was never interrupted. I was so scared to leave him, because his behavior had gotten so bad. Therapy had done some good but not much, He still did not say 3 words maybe and the tantrums were just as bad. We were not able to go out to a store or a restaurant without something setting him off.
I would have done anything to help him at this point so I put him in the spot and it turned out that I could pay a small fee and the would keep him until 3pm under their aftercare program. He stayed in his class and took a nap, they fed him (when he would eat) and I picked him up at 3. He loved it, he did not immediately start getting better, but he made social progress before any speech. He finished out the 2007/2008 year there and had a few days of summer program with them. The new school year started and he went to a head start type class with other kids with disabilities. At 3 he was allowed to go full time, BUT this meant I had to put my 3 year old on a school bus. I hated it, but he loved it. It has worked out well, because between work and school I could not get him there and pick him up every day. When he started this year, he said maybe 6 words, spontaneously. Matthew’s attention has gotten much better, his language is taking off, and he is closer to the other 2 in motor skills now. Some days he is like a light switch. Most kids practice things until the master them, but Matthew watches people and one day he does something for the first time and it is almost perfect. I will never forget the day he ran up to me and said “Mommy” the first time. it was just about 4 months ago when he was 3 1/2. I had not heard it since he was about 11 months old, and truthfully never thought I would hear it again.
In 18 months my son has went from 3 words to a fully functioning child. He still lays in the floor and rolls cars in front of his face, he still does some inappropriate things, he still throws fits(but not nearly as bad as when he had no speech), He is ever unpredictable, and our lives revolve around his some days instead of EVERY day now. I wanted HELP for Matthew, I thought a diagnosis would get me that. He has never been OFFICIALLY diagnosed, and as long as he is getting the help he needs it is not important to me. I believe he is Autistic, I believe he has OCD and ADHD as well. I think I am one of the lucky few that for what ever reason is seeing progress. I think Matthew must have a mild case or I got him help early enough. I am aware that there are people who do not believe you can “recover” from autism, and I am not out to debate anyone on the topic. I believe there are varying degrees and I thank GOD everyday for the progress Matthew has made. The school thinks he may be ready for kindergarten on time and that is my hope.
I hope by telling a small bit of what my experience has been it will help somebody understand or even find comfort in knowing someone else that has dealt with the uncertainty. Thank you for reading and to learn more about Autism and spectrum disorders check out the links below. They are some places I have found info and might help with information or services in your area.
What is Autism?
Autism Society of America
MSNBC Early intervention