Hellobee

I have blogged a little in the past about my special little Drake, and the challenges that made him so different and unique. At the start of this year, I decided it was finally time to get Drake evaluated; something I have thought about on and off through his short life, but talked myself out of many times as I held onto hope that it was just a phase, he would grow out of it, all little boys act like this. But slowly I’ve accepted the idea that this is not a phase, he isn’t growing out of it, and most difficult of all to accept…no, not all little boys act like this.

When Drake was about 8 months old, I enrolled him in the local Gymboree play classes. I was excited to take him and looked forward to interacting with other moms and letting Drake play with other babies his age. At first Drake never really noticed the other babies, but that was fine; he was young they were all parallel playing at the time. As the months went by we became more familiar with the routines and faces. Many of the other babies started to notice one another and interact, and Drake still stayed on the outer fringes, preferring to play alone with my assistance and only joining in at the end for the parachute which was his favorite. It was fine he was still young and other kids were still playing alone as well. We stayed with Gymboree until Drake was over 2, and in that time he never seemed to connect with the other kids, preferring to play on his own or interact in his own unique way.

I was working at the time and found him a new babysitter when his old one moved away. His new babysitter had a son who was only a year older than Drake, and she also watched another little boy the same age as Drake. Little by little I started to notice how the babysitter’s son and the other little boy she cared for would greet each other at the door for drop off; how they would chatter to one another in their toddler language; how they would run off gleefully to play. Many times when I dropped Drake off they would eagerly rush to him at the door imploring him to play, only to have Drake brush by them to get to the TV where he would point to the Baby Einstein DVDs.

Over time I became more curious about Drake’s interactions and would ask his babysitter if he would ever engage with the other boys. She told me that sometimes after they asked Drake to play, he  would move his own stuff closer to them so he was near them, but not necessarily playing with them. When they went outside, Drake would always bring a book along so that after he ran around a little he could come sit down next to his sitter and look at his book. One time at drop off her son even came up to me and asked, “How come Drake doesn’t talk to me when I talk to him?” I could only reply with “I don’t know sweetie… maybe he just doesn’t feel like talking right now.”

I started to pay attention more and it just seemed that whenever we went out to places with other children, whether the park, the library, etc., Drake always seemed too wild, too aloof, too lost in his own world. Even when he interacted with the other children, he always seemed strange and a bit awkward.

When it came time to sign Drake up for preschool, I had a lot of trepidation. I had just given birth to Juliet at the time, and really considered not sending Drake to school at 3. I was worried about how he would adapt to a school setting, how we would manage getting out the door in time, but mostly how Drake would manage in a social setting with other kids. It had gotten to the point that whenever we went to the park or library and it was empty, I felt relief about not having to watch Drake so closely. As soon as another child showed up, my anxiety rose as I would watch Drake be Drake and fear him hurting or upsetting this other child. I’d constantly monitor him until it was time to leave, or if the other child blessedly left first. On our first day of preschool orientation, Drake jumped, crashed, and  scribbled on everyone else’s art work. As the other children worked quietly at their seats, he raced around the room.  I was sure we were going to be kicked out.

And then we hit four and it seemed like all of the issues that I had been observing started to crash down on us constantly. At home we would have meltdowns about the sun setting, Juliet eating faster than him, little things that could set off a chain of tantrums and meltdowns and tears that never ended.

At school his teacher would pull me aside after class and tell me Drake was having some issues with friends; how he would walk through the middle of the circle when everyone was working rather than walk around them; how he would snatch; how he would lay about during circle time. Little by little these incidents started to stick out more. I really started to wonder if this was normal. Did all other parents of 4 year olds have to deal with the same issues? Were their children crying that a puzzle piece they had played with just hours ago was suddenly on the floor and they could no longer enter the room because of that puzzle piece? Back and forth I wrestled with these thoughts. Was there truly something more to this? Was something wrong with my son?

After a lot of back and forth, and denial in some ways, I finally decided that it might be best to get Drake evaluated. In my heart of hearts I wanted nothing more than to be wrong, and that they would tell me I had a perfectly normal 5 year old who was just a little immature perhaps. I hoped nothing short of time would help ease all the fears I had, but I had my doubts I would ever hear those words. It really hit home for me at a birthday party as I watched Drake playing a game of tug of war. Drake stood facing the complete opposite direction as his team, pulling against them for the other side, despite my numerous attempts at redirecting him to face the right way and pull with his friends. That moment really showed me that maybe something was going on inside Drake that was bigger than just immaturity and being five.

It took a little time to get an appointment — specialized doctors like the one Drake saw are hard to find, have waiting lists out the door and often many don’t accept insurance. Even up to the moment of the visits, I wondered if maybe I was wasting everyone’s time. But then came the diagnosis — Sensory Processing Disorder.

What is that? I can truthfully say I still don’t fully understand it myself. It’s a very new disorder with many different layers, and I hope to blog about it as I learn more about it, as well as how it relates to Drake and how he sees the world.

Since Drake started kindergarten, my fears have only been heightened as I send him off every day on his own to a place that I can’t observe. Public school was a very jarring experience coming from preschool, where I was able to talk his teacher daily, see his classmates and gauge their feelings toward Drake. I opened up a early dialogue with his kindergarten teacher and she has been wonderfully communicative with me as we learn more about Drake and what makes him tick. She has implemented some new strategies to help him with many of his issues of awareness, boundaries, and time management, and I am so thankful he has such a dedicated teacher who is working around his needs.

And then on back to school night I received the best gift of all. We happened to run into Drake’s former bus driver that night. Drake’s bus route was cut in half that week as they hadn’t been arriving to school on time, so the bus driver no longer had him on her route. Apparently when Drake would get on the bus, he would start to sing nursery rhymes on the way to school. The other kids got into it and soon the whole bus was filled with singing, which the bus driver said was so sweet. That day when she made her route, the other kids soon noticed Drake wasn’t on the bus and asked for him. They were all disappointed to learn he wasn’t going to be riding with them again. She said how much they would all miss him. I won’t lie and say I didn’t cry a little later thinking about how this sweet woman would never know what that story meant to me. It touched on all my fears and worries for my sweet boy, and gave me some solace in knowing that he was ok when he leaves our door everyday on his way to school.

This has been a very long journey in the making, and it’s also been a very emotional one for me as Drake’s mother. One on hand I finally feel validated after battling with the struggles we have had parenting Drake; it’s reassuring to know that there is indeed a reason why we were all floundering. On the other though, it’s been hard for me to accept this reality, that my son is not “normal” or “neurotypical” as they call it. As a parent it’s hard not to mourn that dream of the life you had for your child, long before your child was ever even born.

I look ahead and worry for the challenges I see coming for Drake. I wonder if he will have friends, will he ever marry, will he have children, a job? It’s hard to see your child struggle and not be accepted or liked, though Mr Chocolate points out these things might not matter to Drake. But I worry about the looks and stares he might get for his behaviors, since he looks like any other little boy.

The future seems so uncertain right now. I look at his sisters now, especially Juliet, and remember Drake at the same age and wonder if I had only seen the signs sooner, as Juliet is clearly developing in a very different way than Drake did at her age. In my most irrational periods, I wonder if I could have done something differently to prevent this outcome. Was it something I ate or didn’t eat when I was pregnant with Drake? Should I have tried to stick it out longer with breastfeeding? A myriad of scenarios spin through my mind and the guilt and worry can consume my every thought some days.

And then as I was researching online to learn more about sensory processing disorder, I came across this video. I cried. Drake will always be Drake and that’s fine. I never want him to feel like he needs to be someone other than who he is already. My wish is just that through therapy and modifications we can better understand him and his needs, so we can adjust things to help make life easier for him to comprehend, and to fit in as best as he wants.

Sensory processing disorder will never define Drake. It can be a facet of him in the same way artist, animal lover, brother, and loving son are, but I will never let it be the only definition of who he is. He is Drake and that’s all he ever needs to be.