Friday, February 03, 2006

Great expectations

Bud and I were running late for gymnastics class today, so by the time we arrived the others were already busy bouncing, swinging and tumbling. The class has grown a little and we've missed two weeks because of illness, so I didn't recognize the two moms who were sitting in the middle of the room engaged in an intense and animated conversation. Bud and I scurried past them and got engrossed in the balance beam and bounce house, and I forgot all about them.

A little while later, one of the moms approached me. She lives in a town near me and her son (18 months younger than Bud) will be starting Kindergarten at his school in the fall. She told me that she is staring to look into which Kindergarten teacher is "best" so that she will be able to get her son into that class, and that she was going to "push for full-day" Kindergarten (our district has half-day sessions.) She asked me if Bud was in for the full day and I told her that he isn't and that, in fact, I don't think he could handle full days of school right now. Sometimes three hours is overwhelming for him.

"My son needs full days," she said definitively. "But I probably won't get it. I never get anything that I ask for."

She pointed to the mom she had been talking to earlier. "She's an advocate. I'm going to get her card. She lives in ThisTown - that's in the best school district in the state. Our district is terrible."

"Really?" I asked.

"Oh, yeah," she said. "Her son gets xyz hours of This Specific Intervention every week. It works great for him. It would work for my son, too. I know it would. Does your son get that?"

"No, he doesn't, " I said. "I haven't asked for it. I -"

"Well I have," she said, "and they told me he doesn't need it."

"Well, I think that This Specific Intervention is not right for all kids on the -"

"Have you ever tried it?"

"No, I -"

"Yeah, our district is terrible," she said, and walked away. I got the sense that I was being dismissed as an uninformed-and-gullible-parent-being-played-by-the-system as I saw her make her way back to the advocate mom to get her contact information.

I thought about the interaction all the way home. Our district is terrible? Can that be? Am I naive and gullible? Am I nonassertive? How is it that this mom who has been dealing with "the system" for 18 fewer months is so much more certain of what her son needs, what the district will fight her on, and how she is going to make her case? Do I have low expectations? Should I be putting up a fight about... something?

Because here's the thing: an hour before we left for gymnastics, I was in a team meeting with all of the people who work with Bud at school - his teacher, the classroom aide, the inclusion coordinator, the OT, the SLP, the learning specialist. They meet every week to discuss his progress, compare notes, test hypotheses, and develop strategies. They invited me to join them - this week, and any other week - and they involved me in the discussion and listened to what I had to say. And I left feeling great.

But as I drove home from gymnastics, I replayed the team meeting and all of the other meetings and conversations I've had with these folks and I wondered, have I done what I'm supposed to do as a parent? I've never brought in a list of specific requests that I want them to meet. Have my expectations been high enough?

The more I thought about it, the clearer it became. No, I've never suggested to the team that Bud needs blahdy-blah intervention for zippidy-do hours each week. But I've communicated my expectations clearly and consistently:

I expect you to know my son.

I expect you to learn to recognize the nuances in his behavior and to take advantage of the teachable moments that the nuances provide.

I expect you to expect him to change, to grow, to learn, to become.

I expect you to delight in his humor.

I expect you to make him feel safe - safe to be himself, safe to take risks, safe to make mistakes.

I expect you to be insightful, thoughtful, and creative.

I expect you to structure his school experience in a way that builds his sense of competence and confidence.

I expect you to be flexible, to try new things, to tweak what sort-of works, to set aside what doesn't work, and to go-go-go with what works while it works but not when it stops working.

I expect you to know your stuff, to keep current, and to share what you know.

I expect you to have high expectations of Bud, and expect that you'll provide high levels of support to help him meet those expectations.

I expect you to be vigilant about not letting him manipulate you... but I expect you to be delighted inside that he has tried to.

I expect you to see his strengths and his gifts, to encourage and feed them, to help him show them to others, and to help him develop a sense of pride.

I expect you to see Bud when you look at Bud, and expect you to know that autism is just one part of who he is.

I expect you to love him, love him, love him.

The team that works with Bud meets my expectations consistently. They don't have all the answers. They don't even have all the questions. But they collaborate, and they try, and they really, really care.

So, perhaps I'm naive, perhaps I'm gullible, and perhaps our district really is terrible; all I know is that I am terribly, terribly pleased.


kristina said...

Even thought your questions may not be about This Specific Intervention they are about Specific Bud Intervention. And they're working, no? So they are the questions that need to be asked (I esp. like the one about the district not having all the questions.)

I know we can never cease to ask enough questions for our kids. It was clear how much everyone in our district loved Charlie and it became increasingly clear how--my heart skips a bit--it was not enough. I don't know, love can be a bit blind, love impels us parents to never be satisified because our expectations are sky-high. Keep asking questions!

MothersVox said...

You have been blogging for a long time . . . for a year or so . . . I have just started to make my way, with pleasure, through your story from the blog start . . .

And you have been thinking about all of this for even longer . . . the treatments, the alternative treatments . . . getting Bud what he needs. So I don't think you are deluding yourself that he is getting great attention at his school.

Every once in a while I go to that place myself . . . the dreadful place of the maybe-ifs . . . maybe if I had pushed for one of the widely pushed for behaviorial treatments that M would be in a "better" spot--passing for NT.

Or maybe if I had insisted that she go on this diet or that diet, that she would be in better spot.

Maybe if I had dropped everything--my work, dissertation, all else that was going on--when we got her first Dx . . . maybe then she would be in a better spot.

But somehow deep inside I know that's not really true.

She's had good support and care. A little more speech therapy could have helped. Maybe some earlier interventions around perseverations of all kinds. But she really seems fine. Even her ever ambiguous Dx may have helped her, in the long run.

Although the other mom at the gym may have appeared to be discerning, I suspect that the person of real discernment is you.

What I heard in her--through your description--was the panic and desperation of the person who is still only 18 months in and doesn't know that it is a long haul, with many twists and turns. Someone who doesn't know that one specific therapy may not hold the "cure."

What I heard was her anxiety. Perhaps it kindled something of that in you?

Alana said...

Your expectations are great...and appropriate, and beneficial to Bud. There is a letter and a spirit to what is supposed to be...many parents get caught up with the letter,but through time and expereince, learn the importance of the spirit, just as you have. Sounds like an amazig team that you have developed, and I give you and Bud all the credit for that!

Susan Senator said...

Beware of uberparents! They are everywhere, in the autism circles (the ones who brag that their kid lost their diagnosis because of all their hard work, or the ones who crow that their kid is now totally mainstreamed). Well, look, they have a right to be proud, but you should never feel like you're not doing enough!!!! Every kid, every family is different, and we don't really know why some do better than others. It could be an intervention, but it could also be pure development. It could be that one kid does better one year than another. My kid does better in the spring than in the winter. (I think!)

Your expectations are sound and your love for Bud is wonderful and moving. Don't ever doubt yourself! (Easy for me to say, I am in a strong mood today -- check me out tomorrow! :-)

Estee Klar-Wolfond said...

I was saying something similar in my blog a few days ago -- of nevering know if we're asking the right questions, doing, or not doing the right things for our children. The worry, the idea that we may have "missed the boat" on one of these decisions feels too crticial and it makes us as parents feel terrified.

The only answer is to go with what feels right. The autism "market" hits this vulnerable part of us hard. Diets, various interventions...nothing is "proven." Day to day work, teaching and all that stuff we do to help our kids must be the right way.


The Jedi Family of Blogs said...

Right On, MOM-NOS! Yes, we can never stop advocating for our kids or become complacent. But we simply can't be experts in every field of expertise that our kids need. It's hard & scary to have to trust our guts to know if the members of our village are doing a good job & know their stuff, but it's essential. Even someone with a degree in speech or OT would need another opinion as to their own child's needs- our job as parents is bigger!!

I have also run into parents who are compensating for their anger/fear/disappointment by becoming super-advocates & I find they do as much damage (by alienating potential allies) as those who do not advocate at all. I end up feeling so sorry for their child/children... how will they hever get a handle on their lives if they are always being told what they are or aren't?

Octobermom said...

The husband and I just had a parent teacher conference at India's school and I tell you, of all the things we talked about with her team, the thing that stands out the most is "she's a sweet, wonderful girl and we just love her". Its so impportant for us as parents to know that the poeple working with our kids genuinely care.

I feel on the defensive often about the type/amount of therapy that India gets. "Oh, you should push fo 40 hours of ABA" or "Oh, make sure she gets more therapy in addition to her full day at school too". I'm sure they mean well but I wish people would just accept that no one knows what's best for India better than I do and that if I'm happy with it, they should be too.

momofjenmatt said...

Hi I have just joined this blog after leaving xanga. I am trying to find other mom's who blog, and although I met some wonderful people on xanga I soon got disguted with xanga not the parents I had (" met" ) and decided to try something else. Anyway I serached for other moms on this blog and found you. You sound like a wonderful mom who really advocates for her child. I hope you come visit my site some time.

Anonymous said...

you are such a wonderful mother to bud in all ways, advocating for him, learning from him, always seeking the best way to approach all things with bud by first considering WHO bud is, and your school system sounds as if they have been respectful and attentive and creative and insightful and responsive. doesn't sound AT ALL naive to me!! i think that mom must have just been experiencing a moment (or longer) of fear. it happens. we all love our kids and fear letting them down and being let down by those who are meant to help. she just sounded panicky to me and some of it jumped off and tried to jump onto you. but look! it didn't work! you list of what you expect from the school system is brilliant and inspiring.

Anonymous said...

We need to be both confident and questioning. As long as we keep evaluating an questioning our approaches and results, we can keep making adjustments, but only when they are needed. I think its a much bigger risk to not ask the questions.

Anonymous said...

As mothersvox said, I heard anxiety. Anxiety so fierce it blocks everything out, even the response to her own questions.

When you first get that diagnosis, you are so helpless. You just don't know what's available, let alone what's good and what's bad.

So you bounce for a little while. Inside your own head.

I hope we all end up realising that the expectations you set out are the ones that matter.

Connie Deming said...

(Absolutely everything kyra said!)
Your heart and soul are tenaciously wired to your beautiful mind.And it sounds as though Bud has absolutely everything he will ever need: insightful compassionate loving caring focusedd human beings ALL around him. How wonderful! I hope you never ever second-guess yourself, knowing that the perceptions of others mirror their OWN fears and disappointments, OR their own love and strength. Your heart is firmly planted in the wise truth of the matter! Take it from a mom who's dealt with the trolls of the system (not that they're ALL trolls, thank heaven!) for 21 years.

Bella Mundi said...

I've been wanting to comment on this post for a while. I've been lurking on your site for a while, and I think it is amazing. I teach students with autism, so it is great for me to hear a parent's perspective, and it really helps me to connect with the parents of my students.

This post, in particular, encompasses everything that I try to do each day in the classroom. My personal favorite is the one about manipulation, because I always get so excited when my students start to work the system and cause trouble, or are smart enough to try new ways of getting things they want but know they can't have. It's an odd thing to get excited when they lie or deceive, but it shows real growth and development.

And for what it's worth, I would take Bud in my classroom any day.