A Little Unique...

Yup, unique... for a couple of reasons, the first of which is a disclaimer...

This post itself is unique because I've been intentional about posting light-hearted fare here to date. I don't know that this will be the last time I deviate from my norm, but it is the first... and we'll see how it goes. I was long to be talked into blogging at first and I decided from the start to avoid using it as my soapbox, not that there's anything wrong with that, I just wasn't sure that I wanted to have a "conversation" like that with the world. (Did you catch the Seinfeld reference?) Instead, I decided to use my blog to find the humor in my life - and that's been helpful - to focus on how humorous life can be rather than the monotony... but I digress...

The other unique part is that what's on my mind today is my eldest son Trevor, and well, he's always been a little unique. It's how God made him - he's been that way from the very start, as we learned that his brain is simply wired different than the average bear, though being our first it took us a little while to really recognize that. He is a joy and a blessing and a wonderful example to us all, but his life is far from easy. While he's grown and changed and defeated so many obstacles over the years, I can't help but hurt for how difficult life can be for him and wonder what the future holds for him...

Sure, we're all unique and all my kids are unique and I hurt for all of them and the very difficult challenges that they face. My other three children are adopted and struggling with the loss that means in their lives, two of them are of a different race and they have all that to deal with and one of them is in psychotherapy dealing with attatchment and anger issues and I hurt for them as they hurt too, and someday I think I'll write a post for each of them as well. It's not that I hurt more for Trevor than for the others, simply that he is the one whose struggles are at the forefront of our lives at this particular time.

Trevor is a different kind of unique. He's a child that is "atypical". When he was first born he was freaking out the nurses in the hospital because he was making eye contact. By the time he was six months we could tell he was very smart, like he was not able to move but he could figure out how to get the toys he wanted by pulling the blanket toward him... you could almost watch the gears in his head turning as he figured out daily life puzzles that way. We were starting to realize lots of differences between Trevor and typical babies though we still didn't really SEE it. At his 9 month check-up his pediatrician said he was concerned that he could not hold a bottle unassisted and that he would not bear weight on his legs yet. Well, more than that, that he wouldn't even put his feet to touch a surface unless forced. I remember how "cute" we thought it was, how he'd pull up his legs like a frog.

So the initial developmental testing began and we were still clueless. Thankfully, Allegheny County, PA (where we lived at the time) has a fabulous early intervention plan where therapists come to your house to test and if you qualify therapists come to your house to have therapy sessions as well... all free! Of course he qualified for physical therapy at first. It was the strangest thing because it seemed like he was born without any typical instincts. He learned to sit up, pull-up, stand without support and walk, but it had to be taught to him by a physical therapist. He hated physical therapy but he learned quickly.

Along the way with the early intervention new things came to light and more therapy began. After he literally choked a few times and us jumping up and sweeping his airway, we found that he didn't know how to chew, swallow or even recognize food in his mouth. We went back to baby food until the occupational therapist had taught him the skills necessary for eating, which he picked up quickly in typical Trevor fashion. Mind you to this day he is still an extremely picky eater, not even liking kid favorites like macaroni and cheese, but he knows how to eat at least! He also qualified for speech initially, though one day he woke up and started speaking in full sentences, so that was able to be over after it barely started.

Along the way we learned things about Trevor that I don't think we understood really at the time or didn't notice. He was super sensitive to hot and cold anything - air temp, water, food. Bath time was a huge challenge. Forget Swimming. Simply playing outside - he was terrified of grass, sun. He ate meticulously - Trevor had the pincer grasp at a young age and he would feed himself one pea at a time. He hated sand, paint, being wet or dirty. I remember the therapists talking about how they all thought that he was showing classic signs of Sensory Integration Dysfunction (SI) or Sensory Processing Disorder (SPD), but I think I just thought I don't care what you call it sonce he's getting lots of therapy and making lots of improvement.

Lots of improvement. Eventually, while always delayed, Trevor learned how to do the things he needed to, like walk and talk and eat. Eventually he even caught up such that his delay was less than the 25% needed to continue therapy services. Sure, he still struggled with grass and sun and being dirty and wet and touched and all of that, was still so uniquely Trevor, but that's what we thought - there's Trevor - he's just so Trevor!

...until his first year of preschool was coming to a conclusion. That class didn't really take volunteers, and Trevor was always so bright he knew a lot and would come home singing the songs. His teacher saw God in everyone of the kids and, like us, saw Trevor as uniquely Trevor. And then came the end of the year celebration - the day I will never forget - the day I looked and saw more than Trevor's uniqueness, but saw his absolute pain. My parents were in town that day and it was crazy getting there on time and none of us have ever been great in remembering cameras and in typical fashion we'd forgotten all recording devices that day, and I have to say I'm somewhat grateful now for the image of that day is plenty seared into my brain like it was yesterday without photographic evidence to serve as reminders. However, I also wish now, sometimes, that I DID have a video camera and documented that day for not only future therapists and doctors, but especially for future teachers and school administrators. I want to say "Look, look! Look how far he's come and the progress he's made! Please, help us move forward instead of backward!"

So on that day, I looked at my son and saw the crippling way his unique brain was making things that should be fun nothing short of painful. I became aware of what was going on in that room - not simply a celebration but an attack on all senses at once. Trevor was obsessed with the ice cream he heard they were going to make. I tried to get him to talk to friends but he refused. I tried to get him to complete some activities with me but he just wanted to make the ice cream, but it wasn't time for that yet. He sat covering his ears, sometimes rocking, sometimes staring into space, angry, he just wanted to make the ice cream. I watched as every other kid in the room laughed and ran with each other from station to station and parents talked and watched and smiled and I became aware of the vast difference between the typical child and my son. I saw for the first time the whispers and glances from the other parents, the pitying looks that I'd never noticed before. I forced him to the stage for presentation time and he wouldn't go but I made him and he just stared. He couldn't name any of the other children and they all had gone around naming each other. When it came to the singing part of the presentation he didn't participate at all, though I knew he knew the lyrics because he sang them all at home. Instead, he sat alone, way off to the side and played with his hands in front of his eyes - self-stimulating. My first child's first preschool celebration and we both couldn't wait to get out of there.

There started the pursuit of more therapies, and diagnosis and the rest of it. I started learning about SI/SPD and since I remembered his first therapists talking about it that's where we started and he was indeed diagnosed with SPD and began therapy of which he has on and off since then. And I learned about the connection between SPD & autism spectrum disorders and took him to a psychiatrist whom he still sees to have him evaluated there. Officially, he does not have autism, though he functions in many ways like a child with Asperger's Syndrome. While he does have obsessions, use scripting, have difficulty in social situations particularly with peers, an absolutely scary amazing memory and self-stimulates (like playing with his hands in front of his eyes and spinning toys etc), he also has two things that are not typical of autistic children, and that is that he is very good with eye contact (freakishly good as you recall - from birth) and while he has great difficulty expressing his own feelings, he very much understands that everyone has feelings and he very much does not want to disappoint, let down, or hurt anyone else. I've learned though, that the therapies that seemed to have helped Trevor progress as well as he has so far - especially those that help him socially, are therapies designed for children with Asperger's Syndrome. So, officially, he has Sensory Processing Disorder of the sensory sensitive type which results in an Anxiety Disorder.

Honestly, I know its subjective - these diagnosis - and I could go elsewhere and they would call him autistic or something else. I don't really care what you call it, I just want to do whatever I can to get him the therapy he needs to continue moving forward and adapting to his uniqueness and finding his unique place in this world. For the most part, we've done that. He's doing amazing! That doesn't mean its gone (its how he's wired - it will never be "cured"), it just means that the reality is getting more hidden. Does that make sense? See, this is the thing I'm learning about neurological disorders... they are sometimes hidden, they are not always as obvious and in some ways that means you will never fully win. What I mean is this, when Trevor hadn't made the progress that he has now, it was obvious, and while I got stares, you learned to ignore them. I remember standing in line at a department store checking out and he was making noises and looking at the "line starts here" sign from all angles - he was in a sign obsession at the time. The store employee and others in line looked at us like we were from Mars. Now though, he holds it together better. If you don't spend the time really paying attention to the way he visibly braces himself in a situation where he may get touched, or listen carefully to what he's saying and realize its none of it original material but scripted from a conversation he's overheard, a book, a movie, a tv show. If you think he'll just tell you how he's feeling and think when you ask him to do something he won't just do it to please you and then go home and vomit later, you don't see it. You don't see the meltdowns, the times he retreats into his own world, the tears, the vomiting, the nightmares, the night-terrors, the sleepwalking/talking, the not eating, the not being able to enjoy the beach and the snow and the paint and the movies etc. The struggles within him from wanting to do what typical children do and knowing it should be fun, but the reality of it being downright painful for him.

Herein lies where we are existing now. Understanding his desire to be typical, to not be in pain, to try to please. Yet understanding that the reality is we're not there on all things and he can't self-regulate in all ways and as his parents we have to help him adapt in healthy ways before he naturally finds unhealthy ways to deal with his pain. Where we agonize over every field trip and swimming lesson, and just every day at school. And every day at home. Where we try desperately to explain the situation to a teacher that thinks he's fine aside from the fact that he has crazy parents. Where we struggle with what to do - knowing that it is imperative that he learn to adapt to his situations (like school) for him to be successful in life and not wanting to shelter him too much, with the other side that if going to school is causing THIS much pain and regression is it worth it? Its agonizing sending your child away each morning not just shaking in fear but to a teacher who is unwilling to try to work with just even understanding his fears and therefore helping him to make healthy adaptations. However, if I pull him, he IS unique and social situations outside of immediate family are near impossible to get him to engage in - does he not retreat into his own world too much then? So, we fight the battle, hold our breath, hope for a better situation next year, and if not hope that we find a way to foster the socialization and adaptations outside the home in another viable way and just keep him home.

So that's it, dealing with SPD, anxiety - neurological disorders is not easy, its what's on my heart of late as I watch my son struggle, and its not humorous, and its not a funny little thing but its where we're at at the moment. And I know that he will continue to improve, because we will keep fighting and praying. And I'm thankful for all the fantastic progress we have made. And I'm blessed with the sweetest spirit of a child that anyone could have. And most days I don't dwell on the fact that its often challenging to have a conversation with my son that isn't about his latest obsession, but while I'm in this fight, I'm reminded of where we've been and where we are and that throughout it all, God has never given us more than we can handle, and He's held Trevor in his hands and that in the end - whatever comes of this latest bump in the road - we will continue to make progress and move forward and be blessed by Trevor...