Susan's Blog

Friday, October 30, 2009

Weed and Feed — But Cut Out the Screed

The issue for autism parents should not be what they did and did not try. That should not be a divisive factor in our community. Why judge? Why not assume that each parent is doing the best they can, with the small margin of exceptions? How can someone judge from the outside what the inside of my family — or my kid — is like? In fact, how dare they?

Some of the comments in my last post just blow my mind. I can’t imagine equating advocacy in the State House with giving up on my kid. It just doesn’t make sense. I also can’t imagine making the broad statement that “most parents” don’t have the time to advocate like that, to give up time to sit in some representative’s antechamber. How the hell does anyone know what other parents do and don’t do with their time? I took my lunch hour to do that. Sometimes I make a trip into Boston specifically to meet with my state rep about Nat and others. If he’s in school, why does that mean that I’ve chosen the wrong way to spend my time?

I just think we all need to tend our own gardens a bit, and work more towards understanding how to solve problems, rather than think that we have all the green grass on our side of the fence.


A-freaking-men. What works for you and yours might not work for somebody else. People need to get that their beliefs about autism are not gospel, regardless of what they may think. Screaming at and belittling people who do not believe/think as you do rarely gets results. Some of my autism mom friends totally and completely disagree with me re: treatments, etc.. So what? We're still friends, because it's not my place to judge them on how they choose to help their child, and vice versa.

I find it so odd that becoming a special needs parent caused me to become more open minded, and yet for some the opposite is true. I don't understand how that happens.

Oh well. You keep on keeping on, Susan.

— added by ASDmomNC on Friday, October 30, 2009 at 6:35 pm

I totally agree! We have enough people judging us who've never "walked the walk". Judging each other is stupid and a waste of time.

— added by Jenn on Friday, October 30, 2009 at 7:58 pm

"I just think we all need to tend our own gardens a bit, and work more towards understanding how to solve problems, rather than think that we have all the green grass on our side of the fence."

I disagree. I think we need to figure out how to pool our resources and build a community garden. Magic beanstalks, magic bean peddlers, and small gardener clans insisting that resources be spent on their favorite variety of magic beanstalks or magic beanstalk research don't help one iota in the big picture. The key will be developing shared understanding of the best choices for long-term planting and production for the community as a whole. That ain't gonna be easy, as much of that shared understanding will need to involve science, and probably even more will need to focus on social models of disability.

— added by Anonymous on Saturday, October 31, 2009 at 2:49 am

Amen. Bravo. Hallelujah.

— added by Penny on Saturday, October 31, 2009 at 7:51 am

I get peeved at the Aspies in the Hub and ASAN b/c they don't want a cure. What's a cure?? You take the child to school, they receive OT, SLP and PDD supports and therapies, to the playground, read to them, take them swimming, to the fair…. everything we do with any child is learning and therefore and education and therefore in their opinion since they may learn to live within regular society from it, they may learn to speak… this is wrong?? That very much upsets me.

It wouldn't matter what choices I make or don't, they won't like it.

It doesn't matter what choices I make or don't, other children with full Autistic or NLD children won't like it.

I like you have decided to become part of my children's solution. That means joining organizations like Community Living, being part of my MP's "team", seriously debating being part of the SEAC (special ed adv. council) for the school board or even running for trustee when they are in h/s… playing "politics"… then that's what I'll do.

Ignore them… they aren't worth your time nor your energy.

— added by farmwifetwo on Saturday, October 31, 2009 at 8:34 am

@anon: Lobbying legislators for change is all about community planning. But in the end, each parent is going to have to decide for their own child how to take care of him, no?

— added by Susan Senator on Saturday, October 31, 2009 at 8:38 am

@Susan: Lobbying legislators for change *is* all about community planning. At issue is the greatly reduced effectiveness of the potential of such lobbying when some of the most vocal (but not necessarily the largest) factions (in community with way underdeveloped shared understandings) prioritize goals that aren't likely to lend the most appropriate long-term opportunities and support for autistic people (vaccine research, insurance reimbursement for dubious treatments, etc.)

"But in the end, each parent is going to have to decide for their own child how to take care of him, no?"

No, that is a short-term reality. It is important, as quality of life for any child and parents, in general, is probably improved with appropriate educational resources, supports where necessary, and access to opportunity.

In the real end, most kids will greatly outlive their parents, and what will really matter is the relationship between autistic people and society. Will they be accepted? Will appropriate lifetime supports, where needed, exist? Will society care about the quality of life and opportunity for autistic people? Will society work to foster the development of self advocacy as well as community societal advocacy for autistic people?


Absolutely no one is saying that autistic children shouldn't receive education, or develop communication/life skills, etc.

It's true, there is disagreement about the ethics/goals of specific teaching methods, and medical insurance reimbursement for educational services, etc.

A plea to "Ignore them" is probably not an admirable or effective community-building tactic, and this is precisely my point. The community as a whole is not likely to benefit from your contribution until you express willingness, desire, and actions that seek shared understandings and mutual goals.

— added by Anonymous on Saturday, October 31, 2009 at 1:49 pm

Hi Anon Again —
I actually think we agree more than disagree — except for two places: 1)FarmWifeTwo is not wrong. She has her opinion and experience that about what has worked for her child and others she knows. Even when parents outlive their kids, they still had to push for what they thought was right for their kids. There should never be one deciding voice for what parents can and cannot do for their own children. This is America, after all!

2)Yes, some of the louder factions do get heard the most by the Legislature; that is always true — even if it is not fair — in any issue, not just autism. But that is precisely why the others — like me, like you, like Penny, ASDMomNC, and like FarmWifeTwo — have to push back, by writing, by educating others, by finding whatever time they can to get their message across.

And FarmWifeTwo, thank you for telling me to ignore them. I always try to ignore and then educate those who feel they must be hurtful in order to be heard. That is never necessary.

In general, I believe that people do listen, but we have to be realistic in our expectations. We have to push for supports and accommodations and acceptance, but we also have to educate ourselves and do what we believe is best for our own children. That is a parent's right and responsibility.

— added by Susan Senator on Saturday, October 31, 2009 at 3:02 pm

Ignore is probably the wrong word… just let it slide would be better.

I firmly believe that everyone, no matter what the dx, the culture, the colour, the religion, etc is entitled to be the best they can be. I unfortunately have found that the higher functioning autistics want the lower end muzzled. I'm sorry but when your NLD child (10yr old) one day flat out tells you he's "Not autistic, his brother is"… IMO tells me that I shouldn't listen to them, and instead to him. He does not wish to be autistic (he doesn't know he has a LD let alone NLD… he's never been told), he wishes to be himself and he will be no different than any other child… actually, he already is… the gains from a non-verbal 3yr old, echolalic 4yr old to a "normal" 10yr old… WOW!!! And no, he was never in ABA or any other such programs. Just educated, with speech therapy pd/private.

When his brother (8 yrs) autistic disorder cries and says "R, go", when he can't go to camp, can't stay at a friend's house, can't stay at Scout's, he does go to swimming lessons and loves it. I cannot find Autism "glorious", nor that I should just accept it, nor that I should tell him to "get over himself and deal with it".

We've been in ABA – 10mths… we'll never go back. But for those other autistics who tell those that wish to be NT "to get over themselves". When those autistics tell me I'm acting like those in the KKK did. I lose all respect for them and their cause.

I have no intentions of doing a brain transplant for either child. But they are going to get the best chance, the best start, the best education, the best speech therapy, the best swimming lessons, library programs, Scouts, Karate… I can find.

The brain can rewire itself… sometimes all the way… sometimes not… If my youngest should end up in care… so be it… I can live with that, and I'll find the best placement I can or lobby to make one for him. But at 8… there's a world out there… and we're going to live in it.

— added by farmwifetwo on Saturday, October 31, 2009 at 3:16 pm


"1)FarmWifeTwo is not wrong."

I did not attribute any degree of correctness/incorrectness to Farmwifetwo. My judgement about "ignore them" is broader, and applies to the need to foster shared understandings, which such a statement has the real potential undermine.


"Ignore is probably the wrong word… just let it slide would be better."

Bravo. "Ignore them" can be taken as encouragement to actively exclude by some. Your clarification is appreciated.

— added by Anonymous on Saturday, October 31, 2009 at 4:42 pm

Anon, it really does feel like everything I've said is like what you're saying. In general, my post was about how people can be so mean when others are really trying to help. I was worried that at first you were one of those, but now I see that you're not, and I'm glad.

— added by Susan Senator on Saturday, October 31, 2009 at 5:01 pm

And I completely agree that there should be supports and acceptance — but we also need therapies and treatments and the right education and to accept each other (the parents) as well for a complete harmony. At the State House, I was lobbying for the supports and accommodations (Day programs and Group Homes and Job supports…) and here on my blog I work on the need for accepting each other.

— added by Susan Senator on Saturday, October 31, 2009 at 5:03 pm

Anon – FWIW, again it's only my opinion and I by no means judge anyone by the choices they make. I have enough trouble dealing with my own parental guilt, and my coulda, woulda, shoulda list…

1. ASAN needs to stop attacking Autism Speaks. They will get no where and parents who are looking for help will feel that ASAN is attacking them personally, and not helping them. In childhood parents are looking for services, therapies, IEP's, dx's… they can't look past the next 6mths… let alone long term.

2. ASAN needs to stop catering to HFA and Aspies. As Sarah (Cat in a Dog's world) complained AS has lots of money and ASAN doesn't. Did ASAN think the Aspies that work for NASA, Microsoft, Apple, Google, Universities, Silicon Valley were going to lose their identities and become "Autistic" or "Aspie" for the "greater good". They aren't, nor are they going to give you any $$$ or have their names linked to your cause.

3. ASAN needs to stop believing in the falsehoods spread by other Autistics. Michelle Dawson claims to have put Disability/Autistic Rights into the Cdn Charter of Rights and Freedoms. This is a lie. The reason she won her Human Rights case was because Disability rights are already enshrined in the Charter…. long before she had her day in court.

4. ASAN needs to start listening to the parents like Susan, Kristina Chew and Harold Doherty. ASAN may not agree with them, but they need to start listening to them and other parents as to what our long term needs/goals for our children are and work towards those goals. To call us names, to tell us we can't speak for our children/adults, to simply brush us off with a "well just give them some more supports", will not get us on side of your cause. We, as parents will make gov'ts listen to our needs, we will lobby for them, we will do what we feel is right, we will brush you aside if you simply refuse to work with us… We have the financial resources to make your cause become our cause (ASAN's and the Parents) or…. we'll use our resources, to simply further our own.

That's no threat… that's reality.

— added by farmwifetwo on Sunday, November 1, 2009 at 9:46 am

Susan, you had an infestation of John Best, jr (Foresam, many other aliases), banned at many blogs for his vile ways.

— added by Liz Ditz on Sunday, November 1, 2009 at 10:19 am

%d bloggers like this: