Monday, March 24, 2014

Looks like we're staying in "Holland"

It's funny, it's been almost a year since I wrote my last blog and in that year we have come so far!!! ...but the subject matter is going to be the same. I feel like every family I have ever known who was affected by a disability only gave me a glimpse of this life no matter how well I thought I knew them. I have even lived with and taken care of children and it STILL didn't prepare me for this parenthood experience. I always thought "if I happen to have a child with special needs I will be just as thrilled and maybe even excited for the privilege and unique experience". Well, here I am and I feel like a big fat hypocrite. My mind tells me everything I have always believed and have been convicted of as true; it doesn't need to be "fixed", it should be embraced; it is a privilege; the only disability in life is ignorance. Every single belief I have ever held has been tested and continues to be stretched in new directions and my emotions and instinct completely contradict what I know to be true. No one tells you or could ever prepare you for the contradictory feelings that a mother experiences every time their child misses a milestone or tanks an assessment or sees progress but is then met with the progress of a same-age peer. I have heard all of the reassurances, we have wonderful support and very well meaning friends and family. Sometimes they help and sometimes you just have to appreciate their intent and love behind what they say.
        So what's different now? Nothing is different just more knowledge and more to adjust to. Why do I choose to share this? It helps to write it out and if it helps one other mom who is scouring the internet looking for answers or comfort then it will have been worth it. There is power in connecting with another mom who "gets it". the people in your life who "get it" are treasures, they are precious and there is no amount of love or words that can be expressed in return to measure how it feels to be understood.
         When I last wrote I shared a piece about a metaphor about traveling and being surprised by the destination. it just isn't what you were prepared for and even if you're willing to go to Holland, if you were planning on Italy then you will be surprised and you will need to time adjust. I have news, the adjustment is ongoing and there are continuous surprises. I think that Holland (at least for our purposes) must be a very unexpected place with new things around every corner. In the spring of 2013 we won the hard fought battle to get some sort of diagnosis which helped us in many way, the best is that our insurance actually started to help out with her costs because they didn't cover developmental delays. This spring (2014), Faith went through transition testing. This is the first round of testing that might be the first of a long line of assessments that you will have to take in stride and keep in context. These assessments are the first to say "after all of your early intervention and hard work you still need more tools" or "well done, you did it you learned the tools you will need to make it on your own for now". These tests are the first that will determine if your child qualifies for their first experience with special education, in our state we only offer preschool if the child qualifies for special education, those kids get to go to public preschool.
         Here's a crash course in special ed qualification (I'm pretty qualified to tell you this because I'm getting ready to graduate with this exact degree!) Every child develops at their own rate but most form a pretty consistent chunk that we call "normal". To qualify for special education you get testing in all sorts of areas; cognitive, speech, motor, behavior, etc. For a child to need special education they must demonstrate enough of a variation to affect their ability to learn and benefit from a classroom setting, we call these variations deviations. Children in special education have (at minimum) 1.5 deviations in two areas or 2.0 standard deviations in 1 area. There are some nuts and bolts that complicate things but this is the basic formula for your purposes. Now, a deviation is a BIG gap, there is a whole lot of variation within the "normal" range. Kids who are 1.5-2 deviations from the norm are in the 2-6% for development in the area that has been tested compared to their peers. So if you took 100 kids and gave them all the same test which at this age consists of a play date with some block stacking and shape sorting and colors and some ability to demonstrate understanding to what is being asked, if you took all those kids, the last 6 ones MIGHT need extra tools and definitely will receive more follow up and the last 2 definitely get more tools (special education).
      We just went through 3 different assessments, speech which measures expressive and receptive language skills, cognitive, and motor skills. Faith has 1.5 standard deviations in motor skills, 1.5 - 2 standard deviations in speech, and 2.4 standard deviations in the cognitive assessment. So, the good news is that she definitely qualifies for preschool. She would have qualified on speech or cognitive alone.... So where does that leave us? It means we're still in Holland and I'm not sure we get to leave. I actually was surprised by one of these test results and we are still adjusting to the idea of it. Honestly it seems like as a parent of any child and especially as a parent if an interesting child you never stop being surprised. I have a couple of ladies who have been fantastic sources of support and they tell me that the unknowns don't really stop but you get used to having the unknowns and you can kind of adjust better to it all over time. You get better at being surprised and a sense of humor helps :-) Sometimes when I just say the facts out loud it feels like I'm speaking a foreign language, it feels like it doesn't fit and it feels like it doesn't make sense. But most days we have our own "normal" and we just take one day at a time, we just keep our eyes on the Lord and let him him drive this crazy bus since he knows where we're headed. We celebrate our victories just like any family and we try to keep things balanced, we do have 2 other children who are also wonderful and they deserve as much attention as their sister.
       Life sure is funny sometimes and sometimes it seems like a really crazy ride but overall I wouldn't choose anything else. God doesn't give me anything I can't handle WITH HIM and in a lot of ways I feel like our interesting bits are an opportunity to reach out and connect with others.

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