Of Changing the Fight
Thursday, June 27, 2013
This is an incredibly difficult blog for me to write because it involves admitting one thing I've denied for years: something just isn't right with my son.
Please don't misunderstand me. LittleDude is a happy, energetic, incredibly smart 4-year-old boy. I love him (and his little brother and my husband and God) more than anything in the entire world, and whatever lies ahead will not change that. In so many ways, he's a perfectly normal little kid... but in so many ways, he's just not.
For years, one word has floated in the back of my mind, and I've ignored it, reasoned it away, and even berated myself for inviting trouble where it didn't exist. That word is autism. So many times, I've said, "When he goes to school, they're going to try to label my smart little boy as slow or autistic or something when HE'S NOT. He's just a smart, stubborn little LittleDude, and I WILL FIGHT FOR HIM." But what happens when you realize that all the things you've reasoned away as being normal for your kid might add up to something that's just a little different -- something that doesn't make him anything less than the stunningly perfect ball of energy that he is but that just means he needs a little extra help? What happens when you realize, as a parent, that the very thing you've been fighting against -- perhaps to the point of (unintentionally) hiding it from his pediatricians -- might just be the one thing you need to fight for in order to fight for your child? Well, what happened first was that I binged on a package of fun-sized Hershey Bars that I'd bought as potty rewards for said 4-year-old. Fortunately, it was a small package. But then I got busy.
To be fair, I don't really know if LittleDude will qualify as being anywhere on the Autism Spectrum. It's incredibly difficult to find good resources on what should concern a parent of a four-year-old. Of the few things I found, LittleDude exhibits very few characteristics. He exhibits more of the characteristics found on lists for younger children -- and exhibited them even more so when he was younger. What issues we have had, I've worked very hard with him to help him "catch up," so the differences aren't always so apparent. In fact, to most people, LittleDude probably seems completely normal.
So many things about him are entirely atypical of even a mildly autistic child. But so many things about him are entirely atypical of a child without any problems either. I suspect, if we are faced with an ASD diagnosis, we will see him diagnosed at the extreme high-functioning end of the spectrum, meaning he would probably be diagnosed as being very, very mildly autistic. Just as likely is that he won't be diagnosed as autistic at all. I'm not sure which possibility scares me more. I've spent so long denying there could be a problem with my perfect little boy, fighting against any label that might cause people to judge him, that I almost don't know how to feel now that my fear is that he won't be labeled -- at least not officially -- and get the help he needs.
So, it's time to do something. Today, I e-mailed LittleDude's pediatrician to inquire about a referral to a developmental pediatrician. Hopefully, I won't be waiting as long for a response as I waited when I last sent an e-mail about an issue with Squeaky. To say that all this sequestration/furlough stuff has messed with the quality of medical care military families are receiving is an understatement. (Seriously, it was two weeks before my last e-mail was even opened. By that point, I'd gone another route to resolve the issue.) Moreso, I'm concerned that I'll have to fight for the referral because I've denied such a referral before.
After e-mailing his pediatrician, I started researching techniques on helping an autistic child cope with some of LittleDude's delays. Again, I found it was very difficult to find information specific to a high-functioning autistic child, but in absence of another option, I'm choosing to be proactive and apply what I can to our situation while leaving the rest.
For tonight, I just want to play with my little boys -- sit nearby while LittleDude doesn't allow me to touch his carefully arranged trains and watch Squeaky as he experiments with his newfound ability to roll across the floor to get to whatever he wants. Tomorrow, I'll try to make a more detailed list of what characteristics LittleDude does and does not exhibit and continue to figure out how I can help him -- whether or not anyone else will. But tonight, tonight, I'm just going to enjoy my little boy.