Finally Some Answers

I've delayed in creating this post since Thursday after Kyleigh's evaluation with EDIS, though I know many have been curious as to what came of our appointment with the developmental pediatrician for a handful of reasons. Now I feel the time is right (since we've caught immediate family up to the situation) and I'm ready to discuss what we've found and it's implications. After a good observation and interview period with the doctor, who is a vast improvement on the last one we saw a little over a year ago, Kyleigh has been diagnosed with Asperger's Syndrome. This is a condition that is considered (by some but not all specialist in the field) to be part of the Autism Spectrum, or an Autistic variant. What really distinguishes Aspergers from Autisum is the severity of symptoms and communication where Aspergers children have a lack of verbal delay. While children with Aspergers are proficient in verbal communication , which in Kyleigh's case is way beyond her developmental age, they have difficultly if any ability to speak in the ways of non-verbal communication (body language, tone, nuances, etc.) The symptoms vary and it's not uncommon for a child with Aspergers to appear to be a quite normal child who behaves rather strangely. In Kyleigh's case, she is prone to uncontrollable emotional outburst, in ability to process emotions, social awkwardness, very limited eye contact (a concern I've been raising since she was a baby), obsessive compulsive tendencies, extreme sensory sensitivity, and serious rigidity in concepts (difficulties with abstract concepts) and motor coordination issues. That's just really the tip of the iceberg with Kyleigh. Some many of her quirky behaviors tie into this condition, even more than I had initially expected. Things like her amazing memory, the extreme limitations to her food preferences, her extreme dislike for certian textures and noises, the areas we have trouble in with her school (such as handwriting), all of these things take root here, in fact, most if not all of Kyleigh's mannerisms can be explained with this diagnosis.
So where does that bring us? This week the doctor's report should be back so that I can have Kyleigh enrolled in the Exceptional Family Member Program (EFMP) and into the special education pre-k program at the elementary school. Once we get her on EFMP we will find out what services Kyleigh is eligible for such as occupational therapy. There are lots of different things we'd like to try to help her with the skills she needs to work on right now and again it comes down to us see what we can gain access to with our resources being limited. Our plan of action is to start with the focus on her education as with the prospect of Kindergarten looming very close ahead we, us and her doctor, feel that if we don't do something she is going to struggle in a classroom at best. We're also still educating ourselves. Developmental disorders are complicated and no two children are affected exactly the same with some of them. It will be slow moving to start but at least we finally have a direction to go in, and for that I'm more thankful than I can say.
Before our appointment ended the doctor asked me if I was okay. At the time I thought that was a pretty odd question. I mean, I've been fighting tooth and nail for over a year now to get someone on the professional level to listen to me, to recognize that Kyleigh is not like other children, and it had finally happened. My greatest hope had come in that I had gotten an answer to a question I had proposed a thousand times that had fallen on deaf ears and cynical attitudes. I wasn't over joyed that my child was diagnosed with a developmental disorder, but I was kind of elated to have that resolved and have a method to go forward and seek out the care we need for her. Apparently, I'm not the norm in this. I jumped immediately across the grief cycle to acceptance. And I'm not naive enough to believe that everyone is accepting this as readily as me. I've heard it all for years now, that there is nothing wrong with Kyleigh, that she'll grow out of these behaviors, that things will change, that it's "just a phase". Well, rest assured that this isn't the case. And I also know that there are some folks who think we've been looking for a problem and seeking there to be something wrong, creating this in our own minds. Let me say to those people that the very idea is distasteful to me and that I can't imagine anyone who would wish any kind of hindrance onto the child of their enemy, much less their own. And I also want to say, to those who don't support this diagnosis, who will continue to believe that "there's nothing wrong with that girl", that you haven't been here. The fact is, and forgive me if this comes across harshly, not one of you have been here with us. No one else has been watching this unfold as I have. So before you jump in with your judgments from your limited view consider the possibility, and consider how it feels for Kris and I to know that our family is not behind us. I know that we will still be criticized and that everyone will have their own opinion regardless of what I say, but it's just something I wanted to say, so there it is!
And that my friends, is the nutshell version of the turn in the road we're taking. I can't predict the future and no one can make any guarantees as to what lies on the path ahead. I do know that I will be thankful every day that my little girl is so high functioning, looking for what it is that I'm supposed to learn from this (God doesn't make mistakes), and doing everything in my ability to make myself more aware of what I can do for my kids and working to give them every advantage I can. Because that's what mom's do and I'm resolved to be the best one that's in me to be.