Autism parents stealing blog ideas while throwing Molotov cocktails at each other
I read a tweet this morning asking parents of kids with Autism (which I will from now on refer to as “autism parents” because it’s way less wordy and I’ll give you, the reader, the benefit of the doubt that you’ll know I’m not implying that it’s autistic parents I’m referring to (and yes I know I just ended a sentence with a preposition, but I can either choose to be grammatically correct, ala “Eats, Shoots & Leaves” or I can write how 99.99% of people speak. I’m choosing my battles)). ANYWAY, this person was asking people what meds they use for their kids who have asd’s (autism spectrum disorders) and why they like them. And I thought, “Perfect blog topic! I’ll totally highjack that woman’s train of thought and take it for a big ol’ ride!!” At least I admit my thievery. Ya know, the whole honor-among-thieves thing.
If you ever want to throw a Molotov Cocktail into a group of autism parents at your next cocktail party (cause you know, us autism parents are a MAINSTAY on the party circuit), just throw out the whole “If you knew anything about autism you would totally medicate your child”, or “You’re going to hell in a hand basket if you give your child drugs”. I mean seriously, in the disability world we just kill each other over this stuff which is quite frankly, hilarious to watch. Did I just say that? No, I mean it’s just tragic, so sad to see parents fight each other. Seriously? If you get caught up in that battle you deserve what you get. Hope you’re good at emotional first-aid, cause you’re gonna need it.
Which is why I think this topic is perfect for this blog (and I use that term loosely while apologizing to real live bloggers out there who actually know HOW to write and do bloggy things, but who accidentally found my little corner of the blogosphere. If you’re still reading this, go wash your eyes out and take two aspirin and then go find one of those brilliant “mommy bloggers” and pretend you never saw this train wreck). As a total aside here (we’re so far off the beaten path, we’ll never get back), did you know the reason no one reads this blog is that apparently readership of “home school blogs” is totally passe now. Done. Over. No one’s reading them anymore. Who knew? Okay, well maybe some people are reading them, ya know the good ones that are actually worth reading (e.g. every other one but this one). But seriously, readership is down because it turns out apparently, that lots of home schoolers are actually doing the educating of the children in their homes instead of reading all about it all day everyday. And isn’t that just like me to be TOTALLY late on a trend? I wear clothes until they start to fall off my body or begin to show too much of my total awesomeness to strangers, and I didn’t even catch on to the whole the-24-tv-show-is-visual-crack until it had been on for like seven years. And then of course, me being all OCD, I had to spend like the next six months watching it on DVD and pretty much carried on complete conversations in 24-ese with everyone for months. Still do in fact. What you mean it’s been cancelled? (I just thought Keifer-my-other-husband was doing his whole Jack Bauer thing and was able to be on two network shows at once). ANYWAY, geesh, what is it with me today? I have the attention span of a gnat on crack. But there’s a reason for that……get to it in a minute.
SO, that whole tweet got me to thinking about the do-I-medicate-for-autism-behaviors-or-not? question. It’s a super hot topic for me but I wish it wasn’t. I wish I could say I’ve got all the internal issues all resolved and I’m comin’ down from the mountain to share it all with you. Ta Da!! Come to the Mighty Gigi Of Oz and I will tell you sumpin!! But the truth of the matter is that it’s a hot topic for me today because yesterday, for the first time in quite awhile, my daughter got into a loop, which turned into a full blown family meltdown with me wishing I could die in the middle of it three times. It was a loop she couldn’t get out no matter how much talking, encouraging, redirecting we did with her (and we no doubt used too many words but there comes a point (which we nearly always miss with her) of no return and you can’t get her to leave you alone so you can catch your breathe. It’s a NASTY soup I don’t recommend trying. SO, after I had multiple meltdowns on top of my daughter’s uncontrollable swirling, I finally left the house for a few hours, presumably to go look for another Mother Of The Year tiara since I had stomped mine to smithereens. Target was all sold out, ya know this being Mother’s Day week and all. SIGH.
The whole episode was very reminiscent of a period of time a few years ago when we started seeing things that went way beyond anything I had ever read about “typical” autism-like behaviors (most kids with autism have rigidity issues, emotion regulation and difficulties in controlling themselves at times). I won’t get into the details of the hundreds of hours of uncontrollable raging, arguments for absolutely NO reason, and hysteria that seemed to bubble up out of nowhere and refused to go anywhere for DAYS. It was ugly and it was almost non-stop. Up until that point as faithful vegetarian-tree-hugging-Jesus-loving-natural-living-freaks we had done everything in our power to stay away from drugs. I barely took aspirin for headaches. I felt like a failure that all the herbal concoctions, vitamins and oils we were using were not touching these outbursts that were enveloping our family (not just “trying”–we faithfully used tried and true herbs and tinctures that lots of kids find almost-instant relief with). Here we were a family that ate whole foods (nothing out of a box, no chemicals or dyes, except for the occasional Costco fruit smoothie, lots of fresh fruits, and hello, we’re vegetarians, so LOTS of veggies!), we made sure our kids were very physically active (we lived less than three miles from the beach in the beautiful South Bay area of Los Angeles and were bathed in sunshine 24/7), and we home schooled both our kids (our daughter in particular), to keep her days manageable and quiet. And yet we were living in an out of control inferno.
In the end (or the beginning I suppose, depending on how you look at it), it was either try the pharma-thing or we were going to admit her to a children’s psych ward. It was that bad. Instead we landed in the emergency room one Sunday and were prescribed something to put out the big flames. Six long weeks later we had our first meeting with a child psychiatrist who took less than 10 seconds to quietly ask us if we had ever heard of Asperger’s syndrome. “Ya think? Uh, ya, we’ve got that base covered…..it’s all this other stuff that is completely destroying us!” We were absolutely lost. I said I was ready try anything but I was openly hoping that the drugs would fail, that we would find the “real” answer elsewhere, so I wouldn’t have to feel like I failed my child by turning to psychiatric meds. Because like SO many other parents in the U.S. I believed that putting your child on a drug equaled failure. I was just copping out, not wanting to deal with the REAL cause of her out of control behaviors (no doubt my ______ parenting). I just wanted to put a band-aid on everything and pretend it didn’t exist. I can come up with LOTS more self recriminating things I told myself (and still do at times) but I think you get the point. I think I thought that because LOTS of high profile child rearing experts and celebrities tell us everyday that we’re failing our children when we turn to Big Pharma. For ANY thing.
So I’m here to tell you……If you’re doing the whole Gluten Free/Casein Free, bio-medical route, and you have a DAN! doctor that you just love, and your child does great with Valerian, B12, melatonin, liquid magnesium, etc….you are an awesome parent! Good on you!! You’re on a path of finding a viable solutions to the various autism-driven-behaviors and I wish you only the best! I really do. I know lots of herbs and vitamins out there DO work for 99% of kids on the autism spectrum and will be happy to give you ideas if you need some. We still use them. If you choose to try one of the psychotropic meds out there, I say to you, Great job!! You’re an awesome parent! No doubt you’ve come to this decision after countless hours of study and consulting with wise parents in your circle of friends and advisors. You are most likely fastidiously monitoring your child’s progress and changes very closely and you maintain a very healthy and frequent line of communication with your doctor. You are aware that EVERY drug has side effects and you have chosen this path after careful consideration.
Relax. Breathe. Know that the path you’re on is yours and yours alone and you’ve come to be on this path after careful research and study. If you’re a Christian Believer like me, no doubt you’ve spent countless hours crying out to God for His wisdom, for His voice to be heard above the cacophony of tantrums and out of control behaviors, and you’ve come to your decision because you feel it’s best for now. We’re not on an easy road, we parents of kids on the autism spectrum. Rarely are there big signs and clearly marked detours for us to follow. Most of the people we share this parenting journey with are completely ignorant as to the challenges we face everyday. We owe it to ourselves to trust our instincts and intuitions to get us through the decisions we have to make today and to give our fellow autism parents enough credit that they’re doing their best too.
- Posted in: #autism #homeschooling #Asperger's