Skip to main content

Dana's Child

Lost somewhere over the past few days of intense policy debates between this blog, Delaware Watch, and First State Politics over items like the Prevailing Wage law is this heartfelt response by Dana Garrett:

My special education son has to see his speech therapist in the public school he attends in his classroom w/ the other kids interfering with nothing but two bookshelves and a line of chairs separating him and the therapist from the intruding little kids. Why? Because there is no other place in the entire school for the sessions to occur.

My son is part of a study conducted by the NIH and they say he needs the special education class 5 days a week. Guess what. The school district can only afford to run the program on 3-day and 2-day day schedules.

When I read the entire 2015 report on school expenditures I noted that the the costs to transport charter school kids are so expensive compared to transporting public school kids that they lack economies of scale (p.73), contributing to Delaware having the 4th highest transportation costs in the nation for our public schools.

I couldn't help but think that my kid is doing without the facilities he needs and the frequency of special education he needs just so people like you and Al Mascitti can promote a school system that breaks up teachers unions. That's your interest and damn the children who might suffer as a consequence--children like my kid.


There are many things that Dana and I will never agree on, but public education--especially the education owed by our country to young American citizens with special needs and/or profound handicaps--is an area in which I believe he and I can march shoulder to shoulder.

In 1995 I was just finishing up a three-year stint as co-chair of Delaware's Social Studies Curriculum Frameworks Commission. We were about to unveil the new standards (anyone remember New Directions? or as I prefer, Nude Erections?), and I had been asked to sit down one evening with a group representing special education parents. They were concerned that the move toward standards-based, assessment-driven instruction was going to leave their children behind. I assured them (because this is what I was told by the Delaware education bureaucracy at the time) that the needs of their children would always be considered.

They were particularly anxious about testing. Would their children be tested on grade level or at their functional level? Again I told them (as I had been assured) that their children would continue to be assessed at the functional level required by the IEPs (Individual Educational Plans).

Over the next four years, the Department of Public Instruction (now DOE) made a liar out of me on all counts.

I had occasion to remember that night when my wife and I adopted a special needs daughter out of state custody. Because, for the first few years, she was technically in our house as a foster child, she had an educational surrogate. Educational surrogates are appointed for children who don't have parents to advocate for them; by and large it is an excellent program.

In our case it was a disaster. My wife and I both have extensive postgraduate training and professional work histories with adolescent learning difficulties. Our surrogate was a well-intentioned but barely literate person who thought our daughter should be institutionalized for the rest of her life, could not learn beyond perhaps employment in a sheltered workshop, and was being victimized by the two of us insisting that she would graduate from high school, would attend college, and would become a productive citizen who didn't have to exist on society's charity.

During the years our daughter spent in the Delaware school system we have experienced the best and worst of teachers, facilities, administrators, programs, testing, and the whole nine yards. We paid thousands of dollars out of pocket for special tutoring that the State refused to certify her for. We experienced program managers explaining what our daughter needed, and how much less the school was going to be able to provide.

At every step of the way our educational surrogate attempted to overrule our decisions, to keep our daughter warehoused in a non-graduation program, out of the mainstream.

We knew we could sue, at least after the adoption became finalized, but we're frankly not the litigious types.

We cried, we raged, we fought, and we got our daughter an education that was sometimes in spite of the public schools instead of due to them.

If you have not been there, you have no idea what's contained in those few paragraphs Dana wrote at the top of this post.

You have no idea of the little triumphs, the constant heartbreaks, the outright prejudice that is ironically better than the complete apathy of often disinterested functionaries.

You have no idea what it feels like to be able to research and discover what your child needs, only to discover that the cost is astronomically beyond your means, and the system is NOT going to provide it for you, no matter what the law says.

Your child could thrive, his or her condition doesn't have to be a permanent bar from self-sufficiency or at least a personally fulfilling life--and other than the other parents in the same boat or a few dedicated, overworked teachers and therapists, you discover that....

Nobody really gives a shit about your child.

I have no problem with school choice, and as a concept I don't have a problem with charters (although, as I've gone on record here before, I think both Dave Burris and Myopia 2015 are seriously over the edge with them), but I have a severe problem with people who piously intone about the best and the brightest being cheated in our system, and who begrudge every nickel and dime being allocated to American citizens with special needs that sometimes don't show on the surface, or which manifest in less than socially pleasing fashion.

That tends to make me--even as a Libertarian--far less sympathetic towards advocates of pulling additional resources out of the regular public schools for gifted or talented children in charter schools.

[A note for truth in advertising: I've also got twins who are gifted and talented, and they sit right in the regular schools. They each read at least five grades about their current grade level, and would excel in any classroom you placed them in. They have been raised to be independent learners who know they need to keep pace if they want to go to the college of their choice. So please don't tell me I have this position just because I have a daughter with special needs. You can find the full spectrum in my house.]

Frankly, the state bureaucracy would just as soon children like Dana's didn't exist, and it is all too happy to put the screws to the districts to cover the cost of their education.

In one below-the-canal school district about 15 years ago there was a profoundly deaf child whose parents insisted (as was their right under least restrictive environment rules that he be mainstreamed into the classroom and provided a full-time aide at district expense. That's what the law said he was entitled to. The district, hurting for money as districts always are, attempted to skirt the law, got sued, lost, and essentially had to have a referendum to pay for the cost of a full-time aide for one child for the next eleven years.

There are also school districts in this state that go out of their way to avoid classifying students as special education so that they don't become obligated to provide certain expensive services.

What can we do about this? Lots.

At the smaller, individual end of the spectrum, volunteering in the schools makes a huge difference. You know, if there was one parent volunteer in the classroom every day that Dana's son had speech therapy, I'll bet you there would be far fewer interruptions and distractions. A bandaid? You bet.

More substantively we could employ a threshold test that beyond a certain point made the state and not the district responsible for covering the cost of adaptive education. There's a lot more room to cut fat at the Townsend Building than there is in most school districts, and the combined fiscal responsibility for special needs education would make the bureaucrats there a lot more zealous about pursuing additional grant funds to pay for it all.

I say as I have said before: I am a great believer in personal responsibility. But young Americans with special educational needs do fall into the category of a national responsibility. They can't succeed without help from the rest of us.

In that sense, Dana's child is my child, too.

Comments

Delaware Watch said…
Wow, Steve, I've got goosebumps on my goosebumps. Thank you, thank you, thank you. That was very moving.

I do plan to write about my son later.

I asked my wife today again if I could post a photo of my son for the piece, but she said no. Good thing, probably. I have received quasi-threatening e-mails & even a couple (restricted) phone calls before. Standard fare for right & left web writers these days, I'm afraid.

In any case, I wanted to post his photograph because he is a beautiful child. You'd never know by looking at him that although he's almost age 4, intellectually he functions as a two-year-old (although in number & letter recognition he operates above his peers).

The consensus is he's not autistic, but what the issue is no one knows. The MRI, which we had to wait several months to get until it was available, showed no abnormalities. There is a subtler scan, but it takes over a year to get in for that one. But we found that the NIH will be doing that w/ their testing group. We were lucky to get him in.

I'll never forget the 1st day we went to the NIH. The NIH group doing the study, all brilliant people, were crammed into a small group of offices in a complex of of prefab offices. Things were so tight, one literally enters into the set of offices through someone's office. I couldn't believe it. Is this a measure of how much our govt takes these problems seriously, I wondered. It was a case where I thought this government agency could use more "fat."

The professionals working w/ us, however, are very dedicated and clearly quite capable.

I also have the same impression of the professionals I've talked to at my son's school. All of them are quite impressive regarding their fields and insightful far beyond their relatively young years. They are a credit to their professions and the school district. But as I wrote, it's the facilities and schedule....

I don't think I would be nearly as anxious about my son's prospects if I were much, much younger. But I'm age 53 and most Garrett men don't make into their 70s.

I worry about what my son's condition will be like when he's an adult and if I am departed. But my wife is quite capable and I have a tremendously kind and smart daughter in her mid twenties.

Still, I had hoped to leave this world w/o having a fundamental worry about anyone in my immediate family. I just keep thinking that if I can somehow get him excellent treatment & education while I'm still around, he'll be in a better condition when I leave.

That sounds morbid, I know, and I apologize for it. But thanks again for your wonderful words. I'm adding your post to my favorites.
Dana,
I've worked around this system for years; my wife works in it. As I said, special needs daughter and now a son with chronic fatigue syndrome in my house. Autism or autism-like syndromes I know and understand but have not lived.

Outside the blogosphere if I can EVER help you and yours with issues regarding your son, you have only to ask.
Hube said…
Great post, Steve. I was wondering about a couple points which maybe you (or Dana) can assist with.

1) What is the REAL deal with "least restrictive environment"? It sounds like Dana's child's experience was just that (in a regular classroom), yet then there's also the anecdote you related.

2) In terms of DE being #4 in the country with transport costs, I think the fact that NCC has essentially changed very little in terms of feeders has a lot to do with it. IOW, the federally mandated busing patterns pretty much still exist, yet are not paid for by the feds. I wonder how this cost compares to charter transport fees. (This is probably more for Dana.)
Hube,
Least Restrictive Enviroment is supposed to be interpreted as the best learning environment for a child that, consistent with appropriate education for his/her special need, allows the child to have the most "normal" school experience possible.

It was intended to keep schools from essentially warehousing special needs children.

In the case of Dana's son, and the example he cites, you're not really talking about a LRE problem (at least as I understood what he said). His son is in a classroom with other children--that's LRE. However, LRE doesn't mean that Dana's son should not be pulled out into a private setting when such a setting is more appropriate to either the therapy or the student's particular need.

What Dana describes is something that is all to frequent in DE schools: a well-intended attempt by (probably) the therapist, the teacher, and the building principal to do the best they can to compensate for the fact that the district hasn't provided the budget or the facilities to take care of these children.

(On the other hand--aside to Dana--even if space is at a crucial premium, I'll bet that either the school nurse's office or the asst. principal's office could be utilized for this process.)

That's why it always bothers me to see districts accepting "mainstream" choice students and filling their schools to capacity to get the extra tax dollars, which has a way of depriving the school buildings of the kinds of spaces necessary to provide one on one or small group services.
Delaware Watch said…
"What Dana describes is something that is all to frequent in DE schools: a well-intended attempt by (probably) the therapist, the teacher, and the building principal to do the best they can to compensate for the fact that the district hasn't provided the budget or the facilities to take care of these children."

Yes, that's exactly it.

Popular posts from this blog

Comment Rescue (?) and child-related gun violence in Delaware

In my post about the idiotic over-reaction to a New Jersey 10-year-old posing with his new squirrel rifle , Dana Garrett left me this response: One waits, apparently in vain, for you to post the annual rates of children who either shoot themselves or someone else with a gun. But then you Libertarians are notoriously ambivalent to and silent about data and facts and would rather talk abstract principles and fear monger (like the government will confiscate your guns). It doesn't require any degree of subtlety to see why you are data and fact adverse. The facts indicate we have a crisis with gun violence and accidents in the USA, and Libertarians offer nothing credible to address it. Lives, even the lives of children, get sacrificed to the fetishism of liberty. That's intellectual cowardice. OK, Dana, let's talk facts. According to the Children's Defense Fund , which is itself only querying the CDCP data base, fewer than 10 children/teens were killed per year in Delaw

With apologies to Hube: dopey WNJ comments of the week

(Well, Hube, at least I'm pulling out Facebook comments and not poaching on your preserve in the Letters.) You will all remember the case this week of the photo of the young man posing with the .22LR squirrel rifle that his Dad got him for his birthday with resulted in Family Services and the local police attempting to search his house.  The story itself is a travesty since neither the father nor the boy had done anything remotely illegal (and check out the picture for how careful the son is being not to have his finger inside the trigger guard when the photo was taken). But the incident is chiefly important for revealing in the Comments Section--within Delaware--the fact that many backers of "common sense gun laws" really do have the elimination of 2nd Amendment rights and eventual outright confiscation of all privately held firearms as their objective: Let's run that by again: Elliot Jacobson says, This instance is not a case of a father bonding with h

The Obligatory Libertarian Tax Day Post

The most disturbing factoid that I learned on Tax Day was that the average American must now spend a full twenty-four hours filling out tax forms. That's three work days. Or, think of it this way: if you had to put in two hours per night after dinner to finish your taxes, that's two weeks (with Sundays off). I saw a talking head economics professor on some Philly TV channel pontificating about how Americans procrastinate. He was laughing. The IRS guy they interviewed actually said, "Tick, tick, tick." You have to wonder if Governor Ruth Ann Minner and her cohorts put in twenty-four hours pondering whether or not to give Kraft Foods $708,000 of our State taxes while demanding that school districts return $8-10 million each?