December 16, 2007 by Marj Hatzell
Ten points if you can correctly guess the above lyric…
If there’s one thing I’ve learned about the Autism World over the past few years, it has to be how frickin’ political it can be. You’d think that folks would be content to learn the most they can and then make educated decisions based on that information in order to do what is right for their family. Autism is a hot topic. Everyone out there has a method, a cure, a therapy or a book to sell you. And parents, being vulnerable and desperate for a “normal” child, will try just about anything. And by anything I mean drugs, supplements, vitamins, diets, hyperbaric chambers, funky therapies, mainstream therapies, air purifiers, shots, IVs and the like. Then there are the theories about what causes it and what you should about. You know, vaccinate them. No, don’t vaccinate them! Put them on the GFCF diet! No, don’t! Try seizure meds! No, Try meds for mental illness! Autism is a disease! No, it’s a disorder! No, It’s a disability! No, it’s a community!
Blah, blah, BLAH. You see, I’ve never subscribed to the belief that it can and should be cured. I do not believe there is anything “wrong” with my child. I do not believe we need to dunk him in holy water and do voodoo to chase out the evil spirits. I certainly do not believe that I need to chelate him or give him extra oxygen. I do not care what caused it, I just want to know where to go from here.
See, I’ve tried the miracle cures. Some would argue I didn’t do them long enough. I didn’t intend to cure Bugaboo (or Bug Boy, whom I’ve also tried with a few things) but instead wished to improve his quality of life. At one time I would have done anything to hear this sweet child’s voice. The thing is, it was there all along! I just wasn’t listening. He’s telling me everyday that all I need to do is love him. Nothing more, nothing less. Love him, unconditionally. Accept him, unconditionally. Just enjoy him. Don’t cure him. There is nothing that needs to be cure because he is perfect the way he is. I won’t argue that. Bugaboo is perfection and love and sweetness. He is sunshine on a cloudy day. He is innocent and good. There is nothing evil about this child. Please do not misconstrue what I relay to you, he drives me up an ABSOLUTE FREAKIN’ WALL on a daily basis. But he is teaching me some tough lessons about life and I am ready to learn them.
The thing is that Bugaboo (and Bug Boy) do have medical difficulties. They do have Neurological issues that need to be addressed. They have seizures, reflux, chronic infections (including ears), chronic allergies and food sensitivities, hyptonic muscles, balance and coordination issues, visual perception difficulties, sensory issues and sleep disturbances. Nothing major (ha!). But we’ve gotten to the point where we are now trying medication with Bugaboo and may someday try something with Bug Boy, if we get to the point where he is out of control and counseling and therapy isn’t making enough of a difference. Neurological disorders do not go away by themselves. If you had an infection, you’d go to the appropriate doctor for treatment and possible medication, right? Well, the same goes for Neurological conditions. When you have a child with such severed ADHD that he cannot sit and eat a portion of a meal and cannot settle down to sleep at night without being restrained and has to be locked IN HIS OWN BEDROOM so he cannot escape and has to be constantly monitored and locked in the yard and house so that if his parents have the audacity to go to the bathroom while he is awake then you consider all possible avenues. And medication was our last resort.
So, how is it going? Bugaboo is on seizure and reflux medications and they are working great. Unfortunately, the miracle seizure drug also causes even more hyperactivity. After a few months of dealing with anger issues (and head banging and hand biting) we tried a mood drug that worked in about two days. We just about had our child back. Here we are six months later and while we do not regret the mood medication, it didn’t do exactly what we though (slow him down just a hair so he can stop and smell the roses!).
A few weeks ago we saw our favorite Neurologist (whom we now pay out of pocket for, and it is expensive, but worth every penny because it FEELS RIGHT to go to him and it NEVER FELT RIGHT going to other Neuros. He just gets our kids.). We reviewed Bugaboo’s and Bug Boy’s behaviors, health, status, etc. We discussed the next step for Bugaboo and we were unanimous (as in, both Daddy and Mommy and the doctor) in our decision to start an ADHD medication to attempt to slow this child down. He is getting bigger, more active, more impulsive and more dangerous. We are petrified we will lose him, it is that bad (Y’all, he climbs in the fireplace while it is lit. He takes food off the stove while it is cooking. He gets in the bathtub fully clothed and turns the water on himself. ). Once we made the decision to put him on an ADHD med, we first had to wean him off of the current sleep med (the one that took him from 4 hours of sleep a night to nine when the melatonin did not work!) because the other meds would also help him regulate his sleep. We weaned him off and a week started the ADHD med. And…
Well, it’s hard to say. He was sick just about all week so he was lethargic and cranky for most of it. Friday there was a dramatic change. He woke up smiling, sat and ate breakfast, tried eating off of a fork for the first time in three years, played with the other kids after school and (probably most exciting) hugged and kissed my mom and repeatedly smelled her sweater, since she wears MORE PERFUME THAN A FRENCH HOOKER and it normally bothers him to the point that he won’t go near her. Except she has been here twice this week and he has smiled at her and loved on her. A miracle? Not really. Improvement? OH YEAH! I’ll take every little inch we fight for. It’s the small battles that win the war, after all.
I do not regret the medications. Believe me, it breaks my heart that I have to give my not-quite-five-year-old child medications to help him function but at the same time I know he cannot function to his potential without them. We are going to have so many ups and downs with him that this is a minuscule detail compared to everything else. There is no shame in my child requiring medication. Heck, I’ve required them from time to time and may soon be starting a new medication (for S.A.D, long story!). If it helps him then I feel like I am doing the right thing. I am getting to know my child for the first time in his five years. Besides, this FEELS right. How could it possibly be the wrong thing to do for him?
You know, I get this weird feeling that when he DOES begin to speak, I will suddenly regret ever wanting him to START talking. After all, he is related to his brother and me and no one ever accused us of reticence…