07 September, 2008

On Special Needs Advocates

Much has been and will continue to be written about Sarah Palin. For my part, as a liberal democrat, I really have nothing to add for her politics. I just don't agree with her or McCain. I believe that the policies of the current administration have damaged this country and that the current republican ticket is more of the same.

What is interesting to me about Palin is her last child, Trig. He was born in April with Down Syndrome. In her speech to the RNC this week she spoke directly to me and other parents of children with Special Needs and said, "you will have an advocate in the White House.".

Well, I suppose that might be interesting to see. From what I am reading about her, she is a career woman and even in that, she has taken Trig along with her out and about. I'm not prepared to comment on her parenting cause I'm not one of her kids and I can't assess what kind of mom she may or may not be. In the end, it's none of my business.

What is my business is the idea that she might be an advocate for people with Special Needs. From where I sit, I'm gonna call bullshit on her suggesting she has the credentials for that role. An article in the New York Times indicates that this has not been part of her history as yet as the Governor in Alaska. There's more there, this is a recommended read.

First, I've been struggling with this blog and how to proceed. It was an effort for me to be able to process my son's surgery back in May. I've put up a few posts since and have been getting feedback that folks are still enjoying reading what I have to say and are interested in Samuel's life and continued growth and recovery.

Too, with this nomination of a parent of a child with Down Syndrome, I've had a couple of folks ask me about this and what I think about it. So, here goes...

As I said earlier, I call bullshit on Palin being an advocate for us parents and our kids with Special Needs. I say this because I don't see how she can. She's busy on the campaign trail and from what I can tell, her husband is too. At the same age Trig is now, we were busy taking Samuel to early intervention. Early intervention
(EI) is a wondrous thing for all kids that are identified and placed in such programs. I say this from first hand experience.

We took Samuel to EI twice a week for his first three years from when he was 2 months old. Rowena and I had the good fortune to work at a place that allowed us to take the time to work at home one day a week so that we could both participate. I would take him on Thursday's one week and the following week on Tuesday. Rowena would alternate the days with me.

These classes helped us learn how to stimulate him and work with him. We learned that instead of wiping his mouth like you would any other child, generally away from the mouth, that we should wipe inwards towards his mouth to help stimulate the muscles and improve oral muscle tone.

We did all kinds of things each week, and we always shared what we did after each class with each other so that we were consistent with how we worked with him. It is a constant effort that continues to this day. I notice that Rowena and I *still* wipe his mouth, when we need to, towards his mouth, not away from it, because we just don't know how to do it any other way now.

After early intervention, Samuel went to a pre-school program for a couple of years until he was of age to begin Kindergarten. When Samuel was born, I apparently told one of our pastors at the time that as our son, our responsibility to Samuel was to help him be the best Samuel he could be. So we sought to have him included (see: http://en.wikipedia.org/wiki/Inclusion_(education) )in the regular kindergarten class environment.

When Victoria was born, I began speaking Spanish to her exclusively at birth. I did this until she was in about 6th grade or so. When Samuel was born. we wanted to do this, but didn't know enough about Down Syndrome and learning, etc. We asked the social worker who was assigned to us at the hospital. She told us we might try to teach him a few words, but that it might confuse him.

We asked the nurses, who didn't really know. We kept asking folks we came across. We finally asked his pediatrician who said to us, "Of course you do. You treat him the same way you treat Victoria. If we see it causing problems then we'll rethink it." Or something very close to that. That's when we finally realized that we were asking because we didn't like the answer we were getting. Our instincts told us that speaking Spanish to him would only be a good thing.

That's what we wanted to hear and that is where and when we started our journey as Samuel's advocates.

So, we followed our pediatrician's advice and that is how we have treated him all along. Our expectations of him are very high, and therefore our view of what and how he should be treated / managed in school are along the same lines.

What Sarah Palin can't do for us as parents of Special needs, is to understand what it all really means. She and her family will never know what it means to have to fight with the school district to get such a placement. She and her family will never likely have a school psychologist tell her that as "the professionals", they knew what was best or her child. The Palins will never have to deal with a principal who doesn't support their efforts at something different than what they knew. They will never have a lawyer attend an IEP meeting to assure that their rights are not violated.

Sarah Palin will *never* be in a meeting with teachers that is supposed to be about process, have it turn into specifics about her child, seek to exercise her rights, and have the Director of Student Services threaten to call the police and have her arrested because she began to record the meeting.

I'm not advocating that pain for anyone. However, I think that as a parent of a child with special needs, having made the choices she has made for her and her family, make such experiences for her, hence her ability to be an advocate for parents like us, virtually impossible. This journey for them as a family is just beginning.

Does that mean if you are a parent of a child with Special Needs that you shouldn't vote for her? I don't know. I know that because she has a child with DS that it doesn't really mean anything to me. I just think that she shouldn't be dangling hope to parents like me that she will be an advocate for what matters to families of kids with Special Needs. I'm not sure she has that credential just yet. Let her and her family live in the shoes of folks like us, where you need a village to help make things happen.

No, having been blessed with your lovely son Trig is not enough Governor Palin. Live the life. Be the parent. Be the advocate for your child. Then, come talk to me and let's see what may be done. I'd be happy to advise you on the issues that face you on your return to Alaska as Governor to help the families of children with Special Needs there. I don't trust you with the deep and critical role you propose for yourself: an advocate for my son.


OhKate said...

I hope, for the sake of Special Needs children everywhere, that what she says is true.

I think, however, that this was just a mercenary political ploy much like Palin's appointment itself. The way she used her son as a speech prop really, really bothered me. That, more than almost anything else about her, made me question her motives.

It's very easy to pull on emotional heartstrings. It's easy to say things you don't mean in a political campaign to instill false hope.

Palin is, first and foremost, a politician. She is a wife and mother after that. I wouldn't hold your breath.

Erin O'Brien said...

Thank you so much for a very pertinent as well as personal post.

People use the term "walk the walk" all the time, but few are actually taking the steps.

The photo of Samuel is beautiful.

Erin O'Brien said...

Wow. This is sinking in.

The nerve of Palin trying to think she could fool people who are so intimate with this subject.

I am very glad you wrote this. I am sure it voices the sentiments of special needs parents everywhere.

Trée said...

Very well written and well argued. Thank you for sharing.

Anonymous said...

Homerun! Thank You!

Linked here from the Erin O'brien blog.

Worked with "Special" population as MSW in Tennessee for 7 years. Have seen the bureaucratic bullshit. Palin is all smoke and mirrors. She is exploiting Trig to boot. I thought exploitation of a disabled child for personal gain was a crime. Where are the DCS workers?

Give 'em hell Samuel!


Chato said...

I'm glad this has resonated for some of you. It's important to me. To the extent you are able, please share the article far and wide!


Diane Vogel Ferri said...

An Amazing post. I am a special education teacher. On my blog post of Sept. 6 I wrote "It's a great PRO_LIFE statement to have a disabled child, but it doesn't mean as much unless you hang around to raise it." I thought of families like you who have devoted every waking minute to their children. How will she do that? god bless. Diane

carol Anne said...

I feel you blog is heartfelt, but how do you know he's not in IE? It is less then two weeks since she was announced as VP. If he traveled during that time, he missed what I consider the equivalent of a family vacation. Is that so horrible?

This child will have a father at home. How lucky for Trig to have a parent at home.

As for Sarah Palin not being an advocate and not understanding the struggles, would Obama or Biden? Wouldn't she still have a better grasp then them of what a SN child would need in school and life?

She tripled special ed. funding in the state of Alaska.
So far she seem to be walking the walk.

I am undecided this election, but I may take my chances with her.

Anonymous said...

"An article in the New York Times indicates that this has not been part of her history as yet as the Governor in Alaska."
Not true

Jamie said...

The NYT has the facts wrong.
She doubled or tripled the funding in Alaska.

This child will have a Dad with him, that's wonderful.

Martin V said...

Thanks for the perspective that you bring to the table!! I have read this a few times over now and posted it all over my facebook to almost everyone that's worked at Camp Costanoan for the past 4 years and have been getting such a wonderful response from it. Messages such as:

"What a great comparison of peoples lives and their concern for their children. Having a child with special needs means putting that child first on the list, Sam's father is an example of that."

I know we all feel the same way you do about this issue and it's more powerful coming from someone they actually know and is the father of someone who has affected their lives so much.

Thank You,
Martin Velasco