Tuesday, March 29, 2011

A post from June 2009

This post was previously posted on our now private family blog, it was dated June 12, 2009. This was roughly 5 months after Shelby's diagnosis of Sensory Processing Disorder.

  This is the face of SPD… Sensory Processing Disorder. If you saw her on a good day you would never know there was anything ‘wrong’ (and I use that term loosely because frankly… I think she is perfect). But if you saw her on an off day… you would write her off as the biggest brat and me (or my husband) as the worst parent on the face of the earth.

I am sad. I am angry. I am ungrateful. I am confused. I mourn. But mostly I am frustrated.

My child has sensory processing disorder. This disorder is not as uncommon as people think (it just seems that no one famous has told us their child suffers from it so therefore it doesn’t exist). There are several tools and therapies that can help a child who suffers from this life altering disorder. The therapies and tools that can help with this disorder are expensive, hard to find and mostly NOT COVERED BY INSURANCE.

I watch my daughter struggle daily because of things that other children pay no attention to. For example…today she was at the park she was able to climb the bars up to the top of the slide…but once she got to the top, she realized that the ‘floor’ that she was standing on was a grate (covered in rubber and posed no real threat to her safety). This grate cause my child who just moments before had the biggest smile radiating the greatest sense of accomplishment --- 6 months ago she would have never been able to pull her body weight up with her arms to climb the rungs of the ladder), now had her paralyzed with fear…because she now knew she wasn’t (in her mind) on solid ground.

She loves to swing high, run fast and spin faster. She wakes up rip raring to go and doesn’t stop until she literally drops exhausted from the way her ‘engine’ has been driving her all day long. Her bones are light and thankfully flexible, her tendons are so loose she sprains her ankles and wrists several times a day – but thankfully does not get injured--, she goes so fast that her little body can just not keep up with her, she falls daily—several times in fact, she CRAVES touch and cannot get close enough but needs to be in control of just who is touching her. She is fearless but is so scared.

Today I crumbled… today I cried… and I mean sobbed in the hospital hallway. You see Shelby had recently had to be ‘re-evaluated’ because SPD isn’t a ‘recognized diagnosis’ with our health insurance or our public school system—side note, if Shelby were to be labeled with her mild CP (yes Shelby does in fact have mild CP caused from a brain bleed prior to birth) or as autistic (which she is not... most children who are autistic do have SPD, but a child/person can have SPD without being on the Autism Spectrum) then our insurance or school system would not be able make us jump through hoops or do the damn dance that we have to, but because we have her ‘only’ labeled as SPD she is screwed—she has to undergo more than average amount of testing to make sure that she still ‘needs’ therapy. Well today I got the call from our AWESOME occupational therapist that our insurance had finally finished evaluating – it took them 3 weeks mind you--- 3 weeks she was not ‘allowed’ to go to therapy session—so that we could come in for therapy today. When I arrived I was given my copy of the report that the OT had sent to our insurance. It was because of this report that I was sobbing in the hallway of the hospital. If you read this report you not knowing my child you would think …. I don’t even know what you would think. It was just so much worse on paper than in real life. And it wasn’t even what was written… it was the fact that a lot of it is true. I won’t go into the specifics because that is obviously her story and since she is 3 she may not want it shared with the entire world… but it made me sad.

She is so much more than ‘just’ an SPD kid. Shelby has been a fighter from the very beginning of her life—since conception really and will continue to be...with Chad and I at her side. She (we are fairly certain) is the polar body that should have not fertilized. – Ok.. prior to fertilization my egg split in what is considered a polar body twinning, well in 99.5% of cases the polar body is supposed to die off… but in our case we were lucky enough to ‘get’ a Shelby out of the deal—she is the twin that wasn’t growing for awhile, she is the twin who’s placenta keep partially detaching, she is the twin who thought it would be fun to have decreases in heart rates and not respond AT ALL during non-stress tests during our pregnancy. She is the baby who thought it would be fun to not do anything that was expected of her…ever. She is our Shelby… she is a perfect and unique gift from God and she is ours. We are blessed beyond words to have her (and the rest of our children as well) in our lives.

As for my anger… I am angry that others think they can judge her because of an off day. I am angry because I and Chad have known since the very beginning that ‘something’ just wasn’t the way it was with our other children and were ignored--- time and time again. It wasn’t until the amazing Dr. Goldstein entered our lives did things start to click and make sense. Dr. Goldstein has been a godsend for Shelby and for us.

I have made it my mission to make myself SHELBY’S VOICE… and the voice of every other parent and child who is suffering from Sensory Processing Disorder. The treatment that my daughter, and other SPD children receive is NOT RIGHT … it is discrimination. It is my mission to make people aware of SPD and the children and families that it affects...it is my mission to make sure that MY CHILD, and ANY CHILD and FAMILY who is affected by SPD recieves the help they need.... I may not be famous... but I sure am LOUD :)


If I had a quarter...

I wish I had a quarter for every time someone has called my sensational child a brat, I’d be rich and none of us would be worrying about how to pay the out of pocket expenses for our multiple therapies, medications, appointments etc.

When our daughter, Shelby, was given her alphabet soup (this is what my husband uses to refer to her multiple diagnoses, SPD to be one of them) I used to think that the reason people didn’t understand about Sensory Processing Disorder was simply because no one knew anything about it,that  it was rare and uncommon…especially in our neck of the woods. This was in 2009. A lot had changed since 2009 in the areas of SPD and ASD.

I set out on  a mission to learn as much as I could about SPD and share it was as many people as I could. I have been able to learn a lot thanks to the amazing authors, therapists, and other families with sensational children. I feel like I am ‘doing my part’ in educating the world about the uniqueness that is my daughter and the thousands of children like her. I felt like a success.

With this feeling also comes the feeling of failure because the people who should understand my daughter the most…don’t.  Our families, very few of our family members have taken the time to listen to what my husband and I have tried to tell them about Sensory Processing Disorder, in fact most of them would be funding our therapies if I in fact did receive a quarter for every time someone called her a brat, or told me “If you’d just spank her, she’d fly right”.

It is our families that cause her the most anxiety… the people in this world who should love her the most and accept her for the awesome miracle that she is, are the ones who understand her the least and are the first to call her a ‘brat’ and some very special family members have even gone so far to use the “r” word (at a family function in front of her and our other children mind you).  It is these people who should be the ones supporting us in this excursion of life that cause us all the most pain.

But my amazing miracle of a little girl hasn’t let that get her down. In the 2 years since she received her diagnoses and began therapy she has met the goals that we have set for her and often flew right on by what we have expected of her. She has slowly climbed out of the dark hole that she was falling into and has once again returned to the amazing blue eyed happy girl (most days) who smiles and communicates with us all.She has come from babbling words that no one could understand, even us as her parents, to talking your ear of and making complete sense.  She will now initiate a conversation with a stranger (probably not the safest choice, but it’s better than the screaming that used to happen when a stranger would look at her). She has gone from missing at least one day a week of school because of the lack of support and understanding of the teachers to this year looking forward to school every day, and in fact cries on no school days (THIS IS HUGE).

But these struggles do not define her… anyone who meets Shelby leaves with a smile on their face…even if she is having an off day…. She is an amazing sensational child and I am so lucky that I was chosen to be her mom… and I thank my stars every single day for her and her amazing siblings…

People often comment on if she will ever be ‘fixed’… and as most of us know, she isn’t broken, but I can tell you she has fixed me for the better.