Our journey with SPD

 I feel the need to share my son with the world. I guess mostly because in sharing our struggles I feel like maybe there is one other mom out there who might say, "wow I'm not alone!" This is largely the way I have felt for the last four years. But before I get in to that let me introduce you to my son.

This is my son, I call him my bear. We will refer to him as P for all intensive purposes. He is four going on 18 most days. He was speaking in full, clear sentences by the time he was 17 months old and was explaining life things to me long before I thought he could even comprehend words like ridiculous and absurd. This little boy can take toys apart and put them back together and explain to you why it works and how it could be improved to do more things. He blows my mind at how his little brain works and the things he remembers. Someone told me to write down the things he does because one day I would forget. Now I look back at those things to remind me how blessed I am to be given the child I was, and how I desire to be his advocate in life and the best mom I can be.



When we brought P home from the hospital we were amazed by his determination. He knew right away what he liked and what he didn't. And he wasn't shy about telling us. To be honest I thought that everyone's baby's were the same. We couldn't go to stores in a different order then what I had told him, I couldn't run up to him and swoop him up in my arms without him having a melt down. He would fight me over the clothes he was wearing, the way his socks fit, changing his diaper. My mom said he was "strong willed"  and everyone told me that I should feel blessed to have such a smart kid! Let me tell you, every time I heard this I wanted to poke them in the eye. Not because their intentions weren't kind, but because how do you come back with that and say, "well ya I wish he was just middle of the street, plain, ol' normal." That makes you sound like mom of the year...



It actually wasn't until P's little brother came along that I truly noticed that maybe what P was going through wasn't "normal". I mean his intelligence wasn't "normal" this was clear very early on, but it was our day to day dealings that just didn't add up. Someone told me it was because I wasn't strict enough, so I started spanking him more (this made things 10X worse). Someone else said it was because he wasn't around other kids, so I decided to go back to work so he could be in a child care environment. This worked while he was in a home center, largely because his caregiver was AMAZING and had experience working with special needs. She could handle him in ways that I didn't think were possible. She could redirect him, ask him to do things, even send him to timeout without fail. It was inspiring, and some days made me feel like a total failure. Then the summer drew to an end and we moved him in to a center that I thought was everything a childcare center should be. It was clean, and they said they used all of the same things we did at home! This center was a disaster and that's a whole other post.....It was while he was at this center though that I decided that this wasn't just him "being defiant", so I called STRIDE. This is the center here in town for development for kids from birth to five. Mind you we had gone and done his 1 before 2 evaluation at 20 months and when the woman asked him to sit in the chair and point to where his ears were he said, "I can't, I left them out there." Yes, this was my 20 month old....

While we were at his eval we met with four women in a nice and quiet room. They asked him lots of questions and played with him. We had to end the eval early because he felt too sick (this happens a lot when he is overwhelmed). They met with Nick and I both together and separately.  We both took surveys and were not allowed to look or answer together. They came to his childcare center and to our home to see how he did in different environments. I think even they had to be shocked at what a different kid he was there compared to at home. After a several week period they called and said they had his "results" ready. We met with C the counselor/social worker and one of the occupational therapists, and that is when they said it....

P has a disability.

I bawled. Partially out of relief that there really was something going on and mostly because I saw a flash of a hard life for him. A life full of people not understanding or wanting to understand what he was going through. And a hard life for me, as his mom. To be the advocate he needs and the mom he deserves. This day will be forever engrained in my memory, from the clothes I was wearing down to the smell of C's office. C handed me a tissue and began to go over the evaluation. The words were there in front of me, the way his teachers described him, "unable to play with children his own age, cannot switch activities, often acts out in defiant ways, can't do circle time, is a disruption". There is was, everything I never wanted to hear said about MY child. Wasn't parenting supposed to be butterflies and roses? Weren't my children never going to be the "bad" kids?

The explained to me what Sensory Processing Disorder (SPD) was, pretty much the wires in his brain linking his sensory abilities together were in a traffic jam, and apparently lots of extremely intelligent kids deal with it. This was why he was scared of swings, had to wear tall socks, couldn't eat food at "normal" temperatures, why standing in a line made him panic. The list went on and on, he made sense to me for the first time in four years. You can imagine the amount of crying I did through this discussion. But I felt like I was given real hope. Not the band-aid kind of "oh he's just a boy" but genuine words of encouragement for him and for me.

So tonight is the open house for STRIDE. We are going to meet his teacher and begin what I'm sure will be one heck of a journey. But we've taken that first single step and my heart is so full of hope. Hope for the little boy that he is and the amazing man I know he will become, and hope for myself.