So… one thing you’ll notice about this blog? It focuses on what we ARE doing not what we ARE NOT doing. I figure the list is shorter. After all it isn’t as if we are jet setting across the atlantic, taking on deep-sea diving, mastering chess, etc etc. There are about a billion things going on all over the world that we are not doing. It’s way more streamlined to make a list of the things we are doing… and honestly it’s far more inspiring and far less depressing. LOL!
I think that the people in Alyssa’s life do a darn good job in rejoicing in all of her triumphs, remembering how far she’s come, and not letting the things she can’t do slow down the celebration of the things she can. However, the reality is that celebrating the amazing leaps and bounds she makes annually, monthly, and even daily? Well… those just don’t get her the services she needs at school. Intro… “whatsheisntitis”… also known as the syndrome that requires us to pick apart what she isn’t, to compare her to the standard kid, and really? to paint the bleakest picture we can. Why? Well, to be blunt… the worse off you are… the better your services are. It seems a bit crazy but as is standard… reality is a bit crazy.
Luckily? These reviews are only biannual. Sadly? They don’t get any easier. Why aren’t they easier? Well most notably due to the fact that we aren’t lying on this paperwork. We aren’t making stuff up. This? is reality. It’s just… well to us on a normal day? It isn’t so very important how close Alyssa is to acting like a typical 4-year old. What is so very important to us is how close Alyssa is to being her very best. The problem comes in when the IEP rolls around… that isn’t what is in writing. What is written is how she’s measuring compared to the textbook 4-year old. It’s pretty obvious if you’ve met Alyssa that she is not a typical textbook 4-year old.
Now, don’t get me wrong. I’m not in denial every day outside of IEP day. I know that a typical kid Alyssa’s age is running, jumping, talking, etc etc. I don’t live in a bubble or under a rock (although my knowledge of pop culture often disputes that fact 😉 ). I know what a typical kid her age is capable of. The thing is? I also know how very little that the world thought this little girl was capable of. Yes, there was the mourning of the little girl who I thought I was going to have… but the reality? This little girl? Well, she’s cause for celebration way more often than the little girl I thought I was going to raise. It’s a matter of… we knew very early on that we weren’t going to be raising a typical kid, that she wasn’t going to race through milestones at lightening speed, and that she’d have to WANT to work to get over the hurdles in her life. From the time Alyssa was diagnosed Neil and I looked at that as a blessing. I know, again with the crazy 😉 , but what a blessing to be given… to never take one tiny milestone for granted. What we didn’t know early on? Was what this little lady was capable of, how huge of an impact she’d have on the world around her, and how MUCH determination she would be filled with. That? was the surprise of it all. That? is the true blessing of it all! She may not fly through milestones… she may set her own pace… she may do things in her own time… but dangit… she does what she WANTS and she is filled with joy doing it!!
It’s not easy…dangit sometimes it is just plain HARD… but the reality is? God doesn’t set us out on this tough path alone. As much as I know all that I’ve typed … as much as I know what’s on that paperwork doesn’t for a millisecond change the little girl it’s written about… it doesn’t make it any easier to swallow having to look at the “whatsheisntitis.” As I read through the draft of her IEP today I felt the tears fall. No matter how much you are aware of all the legalities it doesn’t stop the mama bear from brewing and making you want to go: “GIVE HER TIME!!” I cried for a bit, reached for my phone and sent a text to a dear friend… with nothing more than “I hate IEPs!” You know what’s forever amazing to me? How God knows what I need to hear and somehow? who I need to hear it from. After a few texts my soul started to calm. Then Neil got home and in his amazing way listened, spoke gently, reassured me that it was OK to feel what I was feeling, and hugged me until the tears were all gone. As I calmed I got a text from my friend that said “We all need to hear the truth now and again when we feel the walls taller than our faith.” That? Right there? Will stay with me forever. Such an amazing sentiment and so very very true.
The truth about this situation? As much as tomorrow is not going to be fun, exciting, or positive… it will lead to fun, exciting, and positive days. It will wrap our amazing little girl in all of the care that she can possibly have each day. We have decided that she’s not going to the IEP. That will be a first for us. Everyone that is going has met her and interacted with her for a while so we don’t feel like she will be a “number” to them. That was why it was vital to us she go to the first couple. However, we know she’s starting to understand more and we don’t for one minute want her to feel as if we are focused on what she’s not doing. So, tomorrow I’ll go… I’ll deal with a good dose of “whatsheisntitis” and then? I’ll come home to my family and we will return to our regularly scheduled programming. Why? Well… because focusing on what she isn’t doesn’t change who she is … it just takes time away from celebrating it!
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