Beautiful and totally worthwhile, and sensitive to toxins.
Last week, in the news, I happened to catch this article:
Before I go further, I want to state that the ORIGINAL url for the article read as follows:
“a-potential-end-to-down-syndrome-leaves-parents-torn”
That’s what my bookmark says, but I guess it was too shocking, and so they changed the URL, claiming they “upgraded their content system.” (Yea, right.) NOW, the opening line reads:
“A major breakthrough in Down syndrome research could one day correct the genetic disorder.”
Correct? Because obviously DS is a MISTAKE. (Grrrr!)
“ELIMINATING” DOWN SYNDROME…
Before I go banging my head about this, I want you to know that this has been very much on my mind the last 2 weeks. I was reading an article about a women who was upset to learn her unborn fetus had Down syndrome, but got on a support group while she was still pregnant, shocked to find so many pregnant women happy and thrilled to be having a baby with Down syndrome. (She’s now happy with her child.)
That felt kind of, well, weird to me, and IMMEDIATELY the guilt struck me, that because, while Amelia has brought me tons of joy, in no way has Down syndrome ever made me dance and sing with glee, I must be a terrible mother.
Geez.
Well, I’m over that – DS is what it is. It brings difficulties, health issues (which we, blessedly have dodged so far), learning disabilities, and very often, early onset Alzheimers. Call me prejudiced, but I’m not ready to jump up and down in joy yet. Amelia, however, is an awesome child, who is really struggling with her difficulties (how painful it is that I can see her starting to become aware of them), and no, I’m not going to be gleeful about them, but I AM going to do my best to help her cope, deal and find ways to work around anything that can’t be fixed.
That said, to say that Down syndrome needs to be fixed, cured, remediated, eliminated, or whatever, with genetic handling smacks of eugenics and feels just wrong. (And please note, I am NOT talking about the dangerous medical conditions associated with it.) I can’t easily explain why I feel that way, except to say I believe God makes no mistakes, and that people with DS have as much value as anyone else.
…BUT “EMBRACING” AUTISM…
Now, if you took I said above and replace it with the word “autism” – which produces limiting and disabling behaviors, many of which I believe, can be healed with biomedical intervention or homeopathy and food intervention – and I will get the slap down. As if it’s PERFECTLY FINE to say we can (and should) eliminate Down syndrome, but to even intimate that you can heal autism, you are a horrible, prejudiced human being.
Someone needs to explain this to me. More than ANYTHING, this twist of a double standard makes me honestly think there must be something to the whole toxin-related, pharma-related, GMO-related cause for autism, and that powerful, financial, government-backed sources are trying to slap down this opinion by witch-hunting those who would dare say a negative thing about autism. Leave that negativity for Down syndrome – which by the way, actually IS uncurable, since it affects the genes.
…THEN NORMALIZING IT
Last week, I read another Autism Warrior Mama complaining that the Subaru commercial where the kids throws his clothes off normalizes it. Now to a parent like me, this kid OBVIOUSLY has SPD/autism. I have to agree with the mama – I had a really uncomfortable feeling watching that ad. When you have a child with autism who will not wear clothes, it’s not funny or light or normal, and it’s certainly NOT a solution to have spare clothes in the trunk. It’s also noticeable that the kid is that “cute” age, but what happens when he grows up? Or in our house, with a girl, who all you can think about is, what will happen when she develops breasts?
I think about this EVERY FREAKING DAY. So don’t make light of it, don’t make it “no big deal,” and please, don’t sell cars with a disability that as a parent, I have absolutely no solution for and which will be damaging to my child in a few years if it’s NOT resolved or cured.
I’m optimistic anyway, despite the judgmental attitude of the world at large. What do you think? Is it ok to eliminate Down syndrome? Is it ok to think about curing autism? Is there a double standard employed here?
Perfectly made and totally worth it but sensitive to toxins.
Jolene says
My son with autism has made AMAZING gains with a restrictive diet so i do not dispute the science behind that. I believe in it. David Suzukis video “the autism enigma” shows decades of scientific research to prove that toxins play a role. I dont believe its the ONLY role though. Autism also has a genetic component. And while i am glad to see people take a role and asking the questions, as a mom of a child with Autism i am concerned when so many believe that a ” cure” is as simple as a shot or a pill or a change in diet.
An article i read last week stated that people with Autism ” grow out of it”. It then stated in the same article that this was mainly due to interventions and therapy. So they did not ” grow out of it”. They learned how to handle the symptoms and developed skills. Doesnt mean that they no longer have Autism.
Its frustrating when part of the medical comminity treats autism like a disease to be cured and psychiatry treats it like something that is hopeless. I believe there is a middle ground. It affects both physical AND cognitive function. Maybe.. Just maybe.. Working together these entities would see that medicine ( science) AND therapy( like CBT and ABA) can have a very positive outcome.
Gina B says
That’s a very good point, Jolene! Yes, there usually is a genetic component. I have mixed feelings about when the symptoms of autism disappear, but almost always there is a middle ground. I don’t know why humans have such a hard time accepting that. I just wish one side would not demonize the other (and it goes both ways, at times).
Colleen (Souffle Bombay) says
Gina, it is amazing you are as passionate and aware of all of this as you are. The world needs more advocates like you!
Gina B says
Wow, thank you Colleen! It’s only because I know the pain involved for parents, and that they DON’T need to have that much pain.
Janeane Davis says
I believe that God does not make mistakes and that He created science and scientist to cure things. I don’t have any other words for the Downs Sydrome vs Autism debate.
Gina B says
I’m with you partially, but with science, like all other things, man has corrupted it. I would love to feel that way about science – I did for many years – but now I am coming around to what’s in nature is what can heal.
Aida Ingram says
I think there is so much we still have to learn, especially when it comes to autism. I think in some ways they are still trying to figure it out, and that by itself is a presents a number of problems.
Gina B says
Aida, I totally agree! They claim no one knows what causes, but there are correlations with toxic events and vaccine changes, and curative therapies with food and heavy duty biomed and oxygen therapies. To shrug and say, “Who knows why” – THAT is dangerous and the equivalent of sticking your head in the sand, I believe. I’m also not saying genetics doesn’t play a role – it does, but the evidence doesn’t bear out that it’s genetics alone.