Susan's Blog

Thursday, January 2, 2014

What do we mean by “the best?”

It is true — I hope it is true — that most parents work hard to get their children what they need. But do we sometimes shoot ourselves in the foot with our high standards? I’ve wondered about this for a long time. Back when Nat was still in school and I was a co-chair of the SEPAC (Special Education Parents Advisory Council), I heard a lot from parents about how the supports just weren’t “good enough.” Their child was not progressing the way they thought he should. All the parents nod, understanding, because we, too have often felt that the schools were strapped by the budget and so they could not provide enough of a given service: (ABA in the home, one-to-one with a classroom aide, a particular curriculum, etc.) Because of this mediocre reality, our special needs kids do not evolve to their fullest potential and we wring our hands about it. Rightly so, because we love them and we are their best advocates.

But — we also learn at some point that nothing is perfect, and that we have to negotiate, prioritize, and compromise. In Nat’s case, our school system was generous enough to send him to a very good private ABA school, and I never had to fight for that. But there were several things wrong with this: First, the private school could be very rigid and not always able to do just what he needed, but rather, they would follow their behaviorist dogma instead. Or they were too risk-averse to try something new that I just knew he could do. And finally, I live in a town with an excellent school system and a beautiful neighborhood school where both my younger sons went, and I wanted Nat included. I wanted the school to do whatever it needed to do to make it possible for Nat to go there, but they would not. And I did not want to go to court, and I was happy enough with the private program — it had many good points, too — and so I allowed Nat to follow that particular route.

Nat’s current Day Rehabilitation Program is not necessarily an ideal way for Nat to spend Tuesdays and Thursdays (the days he does not work at the supermarket). In the Day Hab there does seem to be a lot of chaos from all the other developmentally delayed and autistic clients. The whole Day Hab experience is one of fairly low expectations and not a whole lot accomplished.  The staffing is sparse. The clients hang out, sit on physio balls, practice posture, do puzzles, work on the computer, work out on the stationary bike. They go out to the nearby park, they go to the Y, they swim. They bring lunch and eat it together in the mall.

You could look at this and say, “I don’t want my adult loved one spending his day like that. So unproductive. Such a big ratio, not enough real attention. How can anyone learn anything that way?” Well, maybe you’re right. But if you take another look, you might not feel that way. For one thing, with ratios of 1:7, your guy has to learn how to get his needs met. He needs to navigate all those other clients, he needs to pay attention, he needs to be able to get the staff’s attention. These are survival skills. That’s not so terrible a thing to spend your afternoon on. Nat works three days a week, and so he has only two days in the chaos of Day Hab, but you could look at his job and say that all he does is walk around a parking lot. But we say that he has a great job, he gets paid minimum wage like any other worker. He has to perform a certain way or he will be fired.

I know of parents of guys like Nat who take them out of the day programs because they don’t want them to work a job that’s beneath them — like cleaning, for example. Others don’t want their guys in a group home like Nat’s because everyone is so “low functioning” and so what would he learn? Those parents believe that there always have to be higher-functioning role models. But what does that mean? What if the other peers can read or talk but they are unfriendly? What if the other peer cannot talk but he makes your guy laugh?

We all have to think about what are our goals for our children and help them get there. We have to fight for the best services. But we also have to be realistic. And, more than anything, we have to try to look at what is given sometimes in a new way. When I start to get dejected about Nat’s life, Ned points this out to me. He reminds me that the average Joe comes home from a job that probably is not the most stimulating thing ever, and he grabs a beer and turns on the TV. Or the average Jane who comes home and surfs the net all night. We spend hours doing all sorts of “unproductive” stuff. We hang out with people who maybe don’t help us grow, but we hang with them anyway.

Life isn’t always about striving to be the best, have the best, do the best. Sometimes we just have to make the best out of what we have.






Amen. So well said, and so important to remember (or learn!)

— added by Julie on Friday, January 3, 2014 at 8:35 am

I think the hardest lesson many parents have to learn is when to realize that growth happens when we mature, not as we think we can push it to happen. Smartest thing I ever did was get my kid out of ABA after that year. The next smartest was putting him into a low behavioural, high functioning, developmental classroom at Gr 3. Then fight to keep him there at Gr 7. The next battle will be Gr 9. The hardest thing I ever did was decide this past summer to stop homeschooling him on top.

He’s mod/severe ASD or Level 2. He’s no longer ID – hence the reason for the Gr 7 fight. He’s decided to add dates and numbers to his repertoire – words were his thing for years – this past year. When you kid at a glance can tell you that someone who was is 96 was born in 1917… it’s time to let it go.

He spends his day doing his thing on the weekends. He goes to school like everyone else during the week.

Normal. Normal, is a hard lesson to learn once the therapists make you feel like a crappy parent… but to quote Mercedes Lackey in one of her anthologies “Children should live, laugh and play”… so should we all.

— added by farmwifetwo on Friday, January 3, 2014 at 9:30 am

For what has been spent on Nat’s education, the larger society could have had a medical doctor, two psychotherapists or four registered nurses. Nat has a reading age of seven, and uses extensive and expensive supports to do an entry level job better suited to a young person who can work independently.
The pool of available funding is necessarily small and limited. Taxation sucks the life from businesses and workers. Day Hab is the best that can be done for the greatest number, unfortunately.
The federal law states disabled children should have a free and appropriate education. Not even children at posh neurotypical schools get an ideal education actualized for each child.

— added by Heather on Saturday, January 4, 2014 at 8:01 pm

Thanks for your input, Heather, as angry and nasty as it is, I’m sure you’re right as to what else the money spent on Nat could go for. I guess you’d rather spend a ton of money on the dead-end institutions of old, or adult babysitting. Or perhaps an island somewhere and let them fend for themselves? I’d like to add that you have no idea of Nat’s reading level. Nor do you seem to understand that he works competitively, meaning the employer chose to hire him, not someone else, because they think he does the job well. Many other “independent” workers choose not to take jobs like Nat’s. So what if he needs a job coach? Would you deny a blind person braille to support their employment? How far do you go in your bigotry? How about kicking out an elderly person who can’t remember things as well? Is this the kind of country you want us to be? Nat’s education was a group decision. Our town agreed to it — actually suggested it. No one else was harmed by that decision, something I know well as a very involved parent and a former school committee member.

Day Hab needs a bit of tweaking for the new millenium, too, so that people who can contribute don’t just languish for the rest of their days.

Once I got to your simplistic and basically inaccurate statement about taxation, I pretty much understood where you’re coming from — supposed “rugged individualist” nonsense. Taxation is the only way that a civilized society can take care of others. The government subsidizes farmers to let fields lie fallow. Is that a better way to spend public money?

Do me a favor: don’t send me any more comments like this one. This blog is not a democracy. Mean people need not contribute. You get one chance and you just blew it. I don’t need your nasty shit on me or my loved ones. You disagree with me, write your own blog.

— added by Susan Senator on Sunday, January 5, 2014 at 12:32 pm

Heather– I have to say the only thing I could think of was Scrooge when I read your comment when he thought it best to not contribute to the poor and helpless and “decrease the surplus population”. May you never be in a postion where you have a child who needs assistance. On second thought I hope you are and someone has the disgusting attitude towards you that you displayed here.

By the way, children with disabilities have rights under federal law for a reason. It’s because we live in a humane society and most see their potential, not just what you claim they suck from society. Must be nice to be perfect Heather. You’re a vile individual.

— added by to heather on Sunday, January 5, 2014 at 6:39 pm

Wow. What a horrible comment from the first Heather. God forbid you are given any children like ours, to parent.

Nice Heather says “Scrooge”. I am thinking more like Hitler. Genetic cleansing will provide for less drags on the national resources.

Shame on you.

— added by JanB on Monday, January 6, 2014 at 1:39 pm

Susan, thank you for a very illuminating post. Your experience with autism is very different from mine, and I find your viewpoint extremely helpful in informing my work on the Massachusetts Autism Commission.

Your response to the misguided and uninformed comments by Heather1 were also good. You touch on the strengths and weaknesses of Day Hab. This is an important area of great concern to the Commission because, as we all know, there will be several thousand young adults “aging out” of the school (IEP) system here in the Bay State every year for the indefinite future. Not all of them will need extensive supports, but many of them will, and Day Hab is one of the options.

You may also be familiar with DMH’s Clubhouse program. Here’s one example: but they are all over the state. We had heard some rumors that at least one of the Clubhouses was turning away autistic people because they mistakenly thought they weren’t eligible for services. The DMH Commissioner has assured us that is not DMH policy, and wants to know if that happens so they can take remedial steps.

Your message is an important one. We don’t often have the perfect solution for all of life’s challenges, so we often have to make do. Yet, there is nothing wrong with striving to make things better.

It would be hard to respond to the hateful comments of Heather1 any better than you did. I could write a blog post about how wrongheaded all of those assertions are. The money spent on one person’s education is not a drain on society; just the opposite. Clearly, Nat’s education (and a job coach and a supportive family) helped Nat become a production and taxpaying member of society. And, more importantly, has given him to means to follow his own desires and lead the life he chooses.

And, of course, money spent on education does not just disappear. It goes to pay for things like teachers’ salaries, which in turn support the local economy.

The assertion that the “pool of available funding is necessarily small and limited” is true only if you are as small-minded as the commentator. Funding can be as large as society decides it should be. Not that throwing money at a problem is always the best solution. Paying people to do the wrong thing is counterproductive.

Still, to say that taxation “sucks the life from businesses and workers” is to display a complete lack of comprehension as to how the world works. As you point out, it is “the only way that a civilized society can take care of others” although it sounds like the commenter is not interested in helping others. Taxation is what makes business possible. It breathes life into the economy. What business could function without all the infrastructure that is paid for with (guess what) tax dollars?

In the end, though, Susan, it is probably a waste of breath for you and me and the others to rail against the ignorance on display here. Naysayers will try to block progress, but, fortunately, those of us who want to live in a better world are in the majority. I can’t praise you enough for all the good you have done over the years and all that you continue to do. Thank you for that.

— added by Michael Forbes Wilcox on Tuesday, January 7, 2014 at 12:34 pm

Just a note. The second Heather comment states “to heather”. It’s not another Heather. Hopefully the lone hateful Heather is long gone. What a miserable person!
And thank you Michael Wilcox. So well said. Our kids are just as worthwhile as every other child, typical or not.

— added by Jen on Tuesday, January 7, 2014 at 7:12 pm

I thought there were two. The viewpoints are opposed. I guess we will never know. Maybe ALL Heathers are the same.

Heather, heather, heather … It loses it’s meaning after you say it over and over.

I think based upon the different styles of writing (paragraph breaks, punctuation) we are dealing with two heathers, or as I like to think if it, “Better” and “Dead-Header” Heather(s).

Whew. That was exhausting to peck out on my ipad.

— added by Janet bowser on Tuesday, January 7, 2014 at 10:44 pm