Sunday, April 11, 2010

Why Such a Stigma??

As if this life with autism was not enough, it seems that there is a huge stigma (ok, not SEEMS, there is) added to moms that have to use medications. We are looked down upon, criticized for our decisions(did not go GFCF, did not try the right supplements, gave up too soon) even more harshly than others. Let me just get one thing straight. I never, ever, thought that 2 years ago my son would be on medication. We DID cut out diary, ate organic food, gave him Cod Liver Oil, DHEA supplements, vitamins, we tried clay baths to help him 'detox', and I am sure I am missing some other stuff we did. We even tried some supplements that were supposed to calm him and make him think clearer. What happened? He went psychotic. He was WORSE. He peeled off the baseboard in the bathroom, he tore through the drywall, peeled off the paint, and destroyed nearly every door in our old house from the constant banging. Despite all of the above mentioned treatments, he was still non-verbal autistic. The only supplement that offered reprieve was his melatonin-at least he could sleep through the night. However, as time wore on and he got older, his stimming got worse, and it seemed like we would have these manic episodes that would last days. I don't think anyone living in our house at the time of these episodes would doubted us. It was horrible. It was not a decision we took lightly-and I don't think ANY parent does. But, not all autism is 'recovered' through special diets or supplements, and we are doing what has worked best to date. That does not mean that we are now totally resigned to medications to help-we are not. We are still pursuing chiropractic care, and possibly some other forms of natural therapy. I am trying to go with what Nick really likes-and that is pressure. We are in the mindset of doing what works for my son. Why is there such a stigma with meds? If it works, then it works for that child. Moms should not begrudge other moms for doing what works for their kids. We already have enough to deal with, we should all be supporting one another in this journey-not tearing each other apart.

Ok, off my soapbox now. We had a great weekend (and this post was NOT directed at anyone-just general) and I think we even made some new friends! Nick spent all day outside today. Barefoot, and just immersed in doing whatever came to his little mind. He was happy, and we heard lots of his silly talk. I went to Barnes and Noble to order the new book by Susan Senator. She was nice enough to include some stories from families, and we just happened to be one of them. The book is called "The Autism Mom's Survival Guide". Once I get it, I will post some more about it. I loved her first book "Making Peace with Autism". That was the first book where I could relate. Up til then, the kids I had read about all appeared to be higher functioning, or offered hope of miracle like 'cures' through special diets and such. This book was REAL. She was telling it how it really is, and how she finally came to accept autism. I often wonder why these talk shows cannot have someone like her on them? I am sick of certain celebrities being looked upon as autism experts. I would love to see someone like Dr. Temple Grandin, or Susan Senator, or Donna Williams, or Dr. Simon-Barron-Cohen....just ONCE! Try giving those people some quality air time...not those celebrities who shall remain nameless.

Wow, this turned into some sort of a vent! I am watching my darling 6yr old propel himself around the dining room table by sitting in his little Tonka Dumptruck. He is flapping his ears and holding a Spiderman sticker, and jibbering to himself. He is happy, and so are we. Isn't that what it is all about?

6 comments:

Michelle said...

Oh Amy. I am so sorry you have to feel you are being judged harshly for your decision to try medication. You are clearly doing what you know is best for Nick and your family. The media leads people to believe that if you just follow the right diet, plan, etc, then you can cure the disease (Damn Jenny McCarthy and her big mouth!).

So happy he had a good day!

vanwolf said...

LOL! I was one of "those" moms! We too used biomed, and I thought, "how can you put your kid on those mind altering drugs" Well...biomed helped with speech, social skills and eyecontact but never the aggression and hyperactivity and that was what was holding Gage back. Also I found through research that the suppliments that were supposed to calm increase dopamine production where risperdal decreases dopamine production...so thats probably why our guys didn't do well with them. I too will still seek some natural way to try to address this chemical imbalance however, we needed help NOW and the meds do that.
The books sound good, but personally I've been trying to escape from reality with some good fiction. However I loved Horseboy.

Emma said...

I wrote a similar post when we first started meds a few weeks ago. Truthfully, no one has come out and said anything mean to me about it. People who know me can clearly see it is the right decision. We are not doping him up, we are taking the edge off to try to help him learn. THe uncomfortable stuff comes when people who don't know me well wan tto talk about our treatment plans. WHen meds come up, often it is a conversation ender. "Oh, ok". A lot of people, people who aren;t dealing with severe Autism, have been romanced by "recovery" stories. I am still hoping and working for the best for Sam but not all kids recover.

I think of it this way - If my son didn't make enough insulin, I would give him some because it would help him survive. If he was deficient in a vitamin, I would give it to him. Autism is a neurological issue. That means that there is either a structural problem or a neurotransmitter problem. Our MRI ruled out any obvious structural issue so now we work on neurotransmitters. Risperdal affects Dopamine. It is the same neurotransmitter that seems to factor into Parkinson's. If he had Parkinson's no one would question using meds.

Tyler Xaviar said...

Although I do not walk in your shoes, and my child is high functioning, I understand a lot of the stress that comes from the idea of medicating. I deal with it for him and his immune system and asthma issues, and I think in the future it will come up for pdd-nos and adhd issues. I tell people "I think he will need to be medicated in the future for ADHD." I get all jumped on. Immedietly. Mouths gaping open. If you know me, you know I have a hard time putting antibiotics in his mouth and a mask on his face for breathing. The issue is real. There isn't always a magic cure. Sometimes medications HELP.

We as parents have enough self doubt and worry, wondering if we are doing the right thing. We don't need people breathing down our necks criticizing or harrassing us with millions of other alternatives, much of which we've tried. We will ask if we want an opinion. Otherwise, if you disagree, fine, but keep it to yourself and respect others decisions.

You are right, it is a sigma.

I'm so glad to hear that the medication is helping. That is proof, right there, that you made the right choice. Good job.

Sorry I got carried away on your post here. I've dealt with a lot of harrassment and stress around the topic of medications and it really upsets me.

Amy said...

Thanks for your support ladies! It really meams a lot. It is just a shame that us moms are judged so harshly. I can't even imagine what it was like in the 50's and 60's when that a*hole Bettelheim blamed everything on the mothers. They had not only family and friends blaming them, but also doctors! I can't even imagine that. I too, was thinking I would never use medication. But then, the reality started sinking in that this was not getting any better, and something had to be done.
I am excited about the chiro. as they also have a nutritionist on staff as well. So, I am not completely cutting out any more natural help. We have his first appointment on Wed. to discuss the X-rays they took 2 weeks ago and get a treatment plan. YAY!

M said...

No one WANTS to put their child on medications! Hell I dont' know anyone who wants to be on meds themselves!

I'm a big fan of never say never. I admit I used to wonder WHY some people chose meds so fast (I still wonder sometimes) but that goes well beyond autism and into everything as simple as an ear infection because I'm THAT person.

But cod almighty, especially having seen firsthand in MYSELF the difference medication can make for chemical difficulties? I think it is far more cruel to deny your child a medication that can help them out.

It's a spectrum. There are a zillion different ideas and cures and treatments and concepts. And basically? I've never met a single person who does it the same as anyone else but in the end we all want happy, healthy, functioning kids HOWEVER it happens.

So please. Keep your head up high knowing you are doing what is best for your son and your situation. That is what matters the absolute most. <3