Trying To Find the Words

It's not as easy to spill your guts online as I had once thought it would be. For that matter, it's not easy to just talk about the day to day business of life. One thing that some friends/blog critics like to point out is that I generally suck at getting my blog updated. So, once again, I find myself shamed into trying to make the time to do this. It's just been such a crazy past 6 months in our family that I find it liken to bathing....enjoyable when you can get around to it, but only necessary when it's truly necessary. TMI??

So, I suppose that I should just start at what's been eating away at most of my time and energy...turns out that we're one of "those families". You know the ones...we're the ones that have to come up with new and original excuses as to why our child isn't speaking more than a few words at almost 3 years old...the ones that get to be thoroughly embarrassed in front of friends/family/strangers/innocent bystanders/rude bungholes when our child starts tantruming in public when he isn't able to make it through a grocery trip without hitting the sensory overload threshold. Yep. We're parents of a dear wonderful, beautiful, smart, talented, intense boy on the Autism spectrum.

The diagnosis has not been officially made as of yet, but his psychologist is currently referring to his form of Autism as "Pervasive Developmental Delay, Not Otherwise Specified". In other words, "He has some major signs of Autism, but not all. Therefor we really don't know what it is, but we're going to call it Autism, and treat it the same." It's also jokingly referred to as Autism Light.

The last 6 months have been a roller coaster of ups and downs. He's made remarkable progress. He's using several words now in proper context, however they are what's commonly known as Echolalia. Several therapists strive to teach these kids how to respond properly to questions..."yes, no, please, thank you, etc", and it is helpful for them to know how to respond to questions. And it is amazing to have your otherwise voiceless child to be able to tell you something. But it definately knocks the wind right out of you when you have a doctor look at you and say, "You know he's just repeating...like a parrot...he's not really communicating." Sigh....that one comment, after months and months of 3-4 therapies a week knocked me into a funk that I wasn't sure I'd come out of. In fact, it hit me so hard, that I refused to even repeat it in full to anyone. This is the first time I've used the full quote....and it still stings. Like a parrot. Ouch.

Nonetheless, I can see the progress made with each week. The eye contact is much better. He's listening more. He looks at me now when I call his name (70% of the time, anyway). He called me "Mom Mom" and I really think he meant it. The tantrums have lessoned significantly. However, we still have to watch in over-stimulating circumstances...too much light, too much noise, too much chaos can drive him into a major freak out session, just as it would any over stimulated toddler. But for a kid with Autism, a grocery store trip under bright florescent lights, with lots of piped in music and noise from customers and speakers can be more than he can stand. A simple shopping trip is no longer simple. I can count on one hand the number of times he has come with me to the store. Looking back, even his first year, I was compensating for his symptoms then. Able to ignore the signs with a quick and easy excuse for whatever symptom was showing up at the time.

Still, there are days when one of the therapists will refer to something he's doing as "stimming" (a repeated motion that an Autistic person will do to self stimulate or self sooth) and I think to myself, "Is that stimming? Or is that just a 2 year old kid that likes spinning around?" There are days that I look at him and think, "He's fine. He's just slow to talk." But my gut knows that there's something else happening.

I thank my lucky stars that he's not showing the same nightmarish symptoms that I have read about...seizures, completely losing himself in his own mind, violent outbursts, complete loss of communication skills... We thankfully caught it early enough to slow down the progress significantly. But I can't help but wonder if there will come a morning that I will go to get him out of bed and find him there, but gone. Lost. It scares the living daylight out of me.

So, it is my hope that this can become a new way of me getting out some frustrations and stress when needed. I tried keeping a journal, but I hate my handwriting. It's horrid. So I think I'll give this another try. I also vow to talk about the happy things in our family as well. In fact, I'm about to leave this blog to go out and play with my 3 beautiful children. That way I can come back in and tell you all about the fun we had in the Springtime sun.