I had a son who was the sweetest kid you have ever seen. Every time I sent out pictures, people would call and say that he had the best smile, the cutest dimples, the greatest hair, he looked so happy, etc., etc….

My son talked our ears off since he was about 5 months old. He said his first words then: cat, fan, dad.

He never stopped. He was a very happy child until, well, until what, I don’t know. He started changing and it was so subtle at first that we didn’t really see it happening. He was about three, I guess and still amazing us with how smart he was, how many big words he knew. He sounded like a little adult with a high pitched and adorable voice.

When Brett was almost three, we had another son. We knew before he was born that there were some problems and were consumed by these. Charles was born with Down Syndrome and a congenital heart defect that would need to be repaired. It was a lot to deal with, but we felt like we were handling it okay. Our oldest son began having some anxiety, but we attributed it to our own rubbing off on him. “ Kids are intuitive “ we told ourselves, “ he’s just reacting to us “.

The first ritual that we noticed was when people would leave, when he was about four. He would have to be looking out the window, waving and blowing kisses. It sounds cute, but was more scary because he would get so frantic over it. It wasn’t your normal sadness with someone leaving. But again, we were so focused on the rest of the family, that it seemed of little importance compared to the rest of the stuff. Our second son was about 13 months old at the time and we had another son, who was 2 months. Needless to say, a lot of things went by unnoticed as we tried to get through our daily lives.

In preschool, I thought Brett would find his niche and hopefully a few playmates. I couldn’t wait for the teachers to call and say how bright he was. I signed him up for 2 days a week and then spent the entire year trying to figure out why he was the only kid who needed to bring his blankey to school, why he was still not entirely toilet trained, why he was the only one standing by the window waving and blowing kisses. Why can these other mothers drop their kid’s off and just drive away? It was very frustrating, but still, I had no idea what I was dealing with. I thought it was a phases ( like everyone said ) he’ll grow out of it ( like they all said ). I never thought Autism, until he was about 6.

Brett spent two years in Kindergarten, not because he was slow, quite the opposite. He had a huge vocabulary and tons of background knowledge, but he couldn’t follow two step directions and couldn’t remember the routine. He wouldn’t look to the other kids for cues, he would just sit there.

By the beginning of first grade, he had been diagnosed with ADHD. It seemed like this was part of the problem, the ADD, but not all of it. He could seem off in his own world, but if the teacher asked a question he would know the answer. He was listening, just not looking.

At this time and for a while before, Brett had become a sad kid. We had him on the ADD meds to help with his attention, but when we realized that attention wasn’t really his problem, we took him off them. He had become the opposite of the child he was when he was a toddler. Instead of joy, he was filled with fear and anxiety. He was always nervous, was a terrible sleeper and was talking about hurting himself and how he wished he could go to heaven.

We sought the help of a psychiatrist, hoping that she would have a solution. We found one that came highly recommended and went to our first visit. We left with a diagnosis of Asperger’s ( which we suspected) and a prescription for Paxil. We were so desperate for Brett to be Brett again, that we were willing to try anything, though I was very wary of using such a strong drug on him. He was only seven and small for his age at that.

Within two weeks of taking the new meds, Brett had changed yet again and this time it was far worse than the last time. He began threatening kids and teachers, spitting at them, cursing, throwing things and basically turning into a total nightmare. Brett had acted up at home before this, but what was happening now at school was brand new. This child who had never gotten so much as a timeout in three years was now spending virtually every afternoon in the principal’s office.

We marched into the doctor’s office after Brett had been on the Paxil for about two weeks and demanded answers. Is it the medication? Should we take him off of it? Because now I was reading about kids whose brains had become permanently altered by the drug. It had made many of them violent and psychotic.

She suggested that we lower the dosage, which we did for a few weeks before taking him off completely. I cannot remember if we just stopped it cold at that point, but I do remember that I wanted to, but had heard that could be dangerous as well.

At about this time, we enrolled Brett in a Behavior Disorder clinic at the hospital. It was basically an out patient psyche ward for kids. He lasted one half day. They called me to pick him up after about two hours saying that they couldn’t control him and that he had kicked a staff member. He was seven and about 40 pounds at the time and they couldn’t handle him??? I picked him up and gave the staff an earful. Why the fuck were they there except to help kids like Brett? What would they do with a teenager in this position? Tie him to a chair? I was furious, frustrated and very, very afraid for my son and his future.

Brett has not been on any kind of medication in three years. After all the incidents he had in first grade, we took him out of his home school and put him into a school that had a behavior disorder program. It was a small class, and most of the kids were either diagnosed with Autism or Asperger’s. It’s so fucked up to me that kids with these kinds of issues have to be placed in a behavior class, as if they don’t have enough hurdles to get over, now they are being labeled behavior problems. Despite this, Brett thrived in this school. He made friends, he gained self confidence and was turning back into the kid we recognized as Brett. He still had some anxiety, but most of the rituals ( now it was light switches , hand washing and saying “ Thank you! “ over and over again ) had vanished. He was at home, he was comfortable.

By the end of third grade, last year, we had begun transitioning Brett back into his old school. As wonderful as his current placement was, it was only a short term fix that we had made last two and a half years. He had gotten the tools to survive in the “real” world of his regular school and like an abandoned bear cub, we were now ready to send him back into the wild.

He’s had many ups and downs this year and for the most part it has been positive. He is in a self contained class, but goes into the regular ed classes for his strong subjects and is getting ready to be fully mainstreamed with support.

Today, he gave me a hard time about going to school, which is hardly unusual for him, but this time he was crying and carrying on and still in his pj’s when the bus pulled up. Since I had no car and no other way of getting him to school if he missed the bus, I screamed at him to get dressed and half dragged him out the door. Subtlety never works with Brett. He doesn’t get it. As he approached the bus that his brothers had already gotten on, he threw a rock at it. The bus driver said something and Brett said “ Why don’t you just shut your mouth? “. She was speechless. I ran back up the driveway shivering with the zero degree temperature and anger.

What is happening??? Are we going through all of this again??? I am so afraid for my son, his future and my other kids. How does it affect them when they have to walk on eggshells around him? When he gets all the attention? I thought having a son with Down Syndrome would be the hardest part of parenting for me, but it isn’t. Having a son with something that you can’t define, that you can’t seem to help, that makes you feel you are losing your son to some faceless monster is so much worse.

Help me Help me Help me Help me Help me Help me Help me Help me Help me Help me Help me Help me Help me Help me Help me Help me Help me Help me Help me Help me Help me Help me Help me