Friday, March 05, 2010

Discouragement

We've had a few dips in the road lately around here. As we enter IEP season, its always a good idea to up my meds and crack out the wine, keep to the positive and gird ourselves with understanding of Joey's strengths and weaknesses. Since we will be changing schools, it's time to put together another powerpoint about Joey, a solid assessment to present to people who are new to him, new to us, and vice-versa. It's time to lay out those strengths and weaknesses in black and white, to voice concerns and make suggestions. I really do try to keep it positive, or at least even-keel.

But then we have Field Day. It is always a hard day for me, that wake-up spring call to remind me not only how far we've come, but how far we have to go. This year was particularly a shock as I was expecting to see improvement in participation and ability to complete the tasks, and I actually noted there was no progress at all, and even some (dare I say it?) regression. Things he happily did in kindergarden, or at least gave it a good try, this year he tossed aside in frustration and tried to escape the whole scene.

Then came the Special Education Parent Advisory Committee. It was our first one this school year, which is in itself discouraging. That only one other parent showed up didn't really raise my spirits; I'm chair of this thing. Yet again, and by default. Funnily enough, it is really difficult for parents of special ed kids to come to and run meetings; they have these kids with special needs to care for, and respite ain't cheap. That aside, we were getting the rundown of sped numbers, when there was a discussion of three kids with PDD-NOS who weren't going to qualify for service. I blinked, and have been really thinking about that. I remember how close we came to not getting a diagnosis for Joey, even with his communication issues at age 3. He was too social, he was too mobile, etc. etc. etc. All the standard tests were coming back "borderline". It was the doctor, Dr. James Blackman of Kluge Children's Rehab, who looked at those tools, looked at Joey, and said, "These tools are guides and supports, they aren't absolute. This child is autistic." Dr. Blackman also noted that children diagnosed with PDD-NOS tended to be denied service (hence I support the new DSM guidelines of folding the subcategories of the spectrum under one diagnosis: autism spectrum disorder). If we had just gone with the early childhood educator at the center, or any of those tools, would Joey have qualified for service? Would he even have been considered autistic? And yet is it now obvious that he is autistic, there is no going around it with your tools or guides or what have you. The tracking, the clicking, the language issues, the motor issues, the social issues are now clear, far more than that day. We might say we were frightened and had seen the child slipping from us, but in fact, we intervened at the cusp of real manifestation of autism. Joey was born with autism, but we did see the changes that so many parents think herald the beginning of autism. In fact, they just become more obvious, as other children develop other skills, while your own child seems to turn aside from them. He hadn't just started. It just became more visible.

Back to the committee, where they are denying service to kids with PDD-NOS, reminding me that the attitudes of school are something I must reckon with. I have no idea why these kids are being denied service, specifically, but the shock remains. If they are visible enough to have a diagnosis, then it is time for early intervention for functional and social skills at the very least; yet these children's parents will be told the school system is not going to help them. Will they know where to turn next? I'm digressing again. The point is, Joey is more disabled than I ever think he is. Joey is just Joey to me, he is who he is, and he grows and learns, the miracle of a child growing up and becoming an adult, one step at a time. As mild as we might think his autism- and he is constantly described in official paperwork with things like "mild autism" (though when he was four and five, we did see it become "moderate autism"), "high functioning", and other such odd nomenclatures- it affects him in significant ways, in ways that cannot be pushed aside or ignored.

Then came the magic show last night. He sat with another friend from his class, another child described as "mild." The child certainly speaks better than Joey, but has other quirks of manner and coping that are unmistakable to a parent of a spectrum child. That child's mother was concerned about staying for the whole show, and I agreed. Her child made it through, sitting in her lap on the floor. Mine needed two breaks, and was unhappy with the noise and need to focus even with those breaks. The reminder that Joey often needs one-to-one attention and care in group settings- settings where most of the parents just told their kid to go sit on the floor and enjoy the show with their friends, while the parents retreated to the back of the gym to talk amongst themselves- was a stark one; especially since I was a lone parent with two kids. One melted down if we stayed, the other melted down if we left. At least it was balanced, right?

When we put Joey into preschool, we had hopes that he would be "mainstreamed" by kindergarden. That didn't happen. Then there was talk of him being "mainstreamed" by third grade. The problem there was that our idea of "mainstreamed" and the school's definition of "mainstreamed" are two very different things. Except that for services, they want to go with our definition, while for practice, they go with their own. They're going to want to stick him into regular-ed classes, but they aren't going to want to give him an aide or a specialized resource room once he gets there.

Inclusion is a funny thing. That was supposed to be the big topic of the Sped meeting, but there was a hollowness, or perhaps a shallowness, to the whole discussion. School personnel spent a lot of time patting themselves on the back about how wonderful it was that kids could be included, and that inclusion was done on an individual basis. And all I kept thinking was, No kidding! Of course you are going to put for LRE, that's the law. But I want to know what you intend to achieve by pushing these kids out into regular ed. What are they supposed to gain? And do they gain it? Pushing Joey into the mainstream will look great for the paperwork, but what is he gaining? It isn't like peer models mean that much to him in teaching social skills or self-regulation. Is the goal to teach the other children tolerance? We could argue some success on that front, and certainly that is to Joey's benefit as well as the regular ed kids. Academic progress? That would need to be more specific. Some things Joey gains, some things he does not.

And I have other odd details to worry about. Joey is getting older. We are screaming at lightning speed towards middle school. I have to give thought to his social comfort and skills. The Upper Elementary bus is permitted to drop kids off at a designated bus stop without an adult there to meet them. Our stop is two blocks away and not in sight of the house, since the upper elementary bus does not stop at the corner that is half a block away. Would Joey be able to get home safe? Or could he wander off if he's had a bad day? Do I put him on the regular bus and hope the bus environment isn't overwhelming and trust him to walk down the hill and around a corner? Or do I keep him on the special ed bus, which will bring him to my door and requires my presence when he arrives, but begins to run the risk of having him be at the butt of all those "short bus" jokes? How much of a safety risk is it, and is it a good trade-off for his social acceptance?

See, the other thing noted in the meeting was that as the kids hit high school, they often refuse the accommodations they are permitted because they "don't want to be different." And the school personnel permit it. There was no talk of getting these kids counseling, or working to improve attitudes and acceptance among non-disabled peers, or expanding understanding of accommodations and why they might be needed or why it would be inappropriate (or even mean and vicious) to make other feel they needed to refuse the supports they need to be successful and to learn. The balance between needs and realities is one that no one wants to talk about, far less do anything about. What happened to valuing diversity and acceptance? What happened to the dream of Martin Luther King? Is our understanding of these concepts so shallow? Yet this subtle exclusion in the world of "inclusion" is something I must think about now, to help Joey self-advocate later. The idea of balancing safety with social acceptance is absurd, and yet there it is- an issue that must be considered as Joey builds his social foundations.

It takes courage to get through a day. For Joey, it seems to take more than his share, and we must prepare him for the stores of courage he will need to get through puberty. He's only seven, and I have to worry about his life when he turns seventeen. How far will he have come? Will he be able to communicate his triumphs and tribulations effectively? Will he be valued for the beautiful person he is and is learning to be, or scorned for his social, communication, and motor skill challenges? How can I help him?

8 comments:

Niksmom said...

Oh, honey, I hear the frustration and discouragement in every word. Sometimes it is so damned hard when it shouldn't have to be.

I'm sending you love and wishes for solutions and appropriate accommodations for your sweet, wonderful Joey.

farmwifetwo said...

Having been there, done that with "speech and language delayed with global delays" and told "it's just a learning disability we don't have to do anything until Gr 3"... and now have "a mild form of ASD" to CYA... there will be less services the more and more they tighten budgets and the DSM V goes in. The younger had severe PDD and the child psychiatrist changed it to Autistic disorder this summer to prevent the loss of services he will forever be requiring services.

Yes, children can refuse services once they reach high school. I am surprised at Gr 5, eldest hasn't started to fight over them but I think that has a lot to do with his classmates (there's 25kids in his grade) knowing they've always been there and the fact they are using some of his services (like PPM 140, social skills etc) for all of them. He gets free time at the end of the day... someone gets to go with him as well. Why would they sabotage it??? Also, due to a LOT of work by he and I, he's one of the smarter kids in his class - Math mostly - so the other kids ask him for help, not teased. Lastly, having NLD not Asperger's.. he's very "normal" in speech and mannerisms. Yes, some mannerisms are wrong and he'll say stuff that isn't right... but it's very minor and overlooked b/c the rest are use to it... So he doesn't stand out.

I am currently taking little boy out of the regular classroom and moving him to a slow learners (NT kids that need a little extra help) style one. The paperwork is underway. Integration is wonderful... until you reach that point in time where your child is taught by the EA not by the teacher. B/c of high self help skills, low behaviour, low sensory issues (needs extra movement but is ok with sounds, lights etc), plus, his ability to learn although he's still non-verbal - with respond verbally to those he's comfortable with, does not talk to strangers and still does not "chat" - he does qualify and does not need to go into an ASD class. It'll take us the rest of the year to get it all in place. I'm not happy about it... but....

In the end we do the best we can. I've had one mainstreamed and one integrated. I will have one moved to special ed. Good or bad?? Either way it'll probably become part of my "coulda, woulda, shoulda" list.

Stimey said...

I hear you friend. We have our IEP meeting coming up in a week or so and I've been working with a therapist to figure out some good goals for Jack and yet it all feels so useless. I wonder how much it will really help. Yes, he gets services. Yes, he has aides. But he is still so isolated in class. He is in an "inclusive" environment, yet he is not included. There really needs to be so much peer education to really make these environments inclusive. The other kids have to understand so they don't make the jokes and give the weird looks. Jack can do all the hard work in the world, but he is still going to be different, always different. And that's okay and I know that's okay and I'm trying to teach him that it's okay, but the other kids may not agree. And that's the killer. And when he's an adult, an the other adults don't think his differences are okay, that is the problem.

I know how you feel about those night events at the school too. Those kill me. We recently went to bingo night and if Alex hadn't been with me, it would have been a complete disaster. I don't know that the other parents and teachers get how really hard it is.

You hit a nerve with this post. I can relate to so much of it. I wish I had some answers, but my response is basically that I have to keep teaching my kids, advocating for them, and trying to educate the typical people. That's really all I can do. And it's overwhelming, but I have to.

Big hugs to you.

christophersmom said...

I can relate to your situation and as I read your post I was nodding and thinking, "yep"... My son is mainstreamed with an aide in Kindergarten after I held him back one year, even though academically he's advanced for his age. His tantrums and non-compliant behaviors in class are the major issue for the teacher, it's been very rough, but we have an ABA team (including the aides) backing him and the Special Ed supervisor in his school is very supportive of his inclusion. But it's been nerve-wrecking to me, I sometimes wonder if inclusion is the way to go when I see how my son can indeed be disruptive to the other kids in class and has been bullied at times. I wish I knew more moms with kids who are neither super high functioning nor low functioning because they might have experience with what my son is going through. I don't know if I'm overreacting or if I'm correct in being so worried about my son's school situation.

TC said...

You don't know me--I'm mostly a lurker--but I'm jumping in with both feet anyway. (Son, N, 9, newly diagnosed with PDD, but but 'quirky' since early on, etc.) Niksmom can vouch for me. ;-)

First, worrying about high school now is just going to make you crazy. There's so much that's going to change between now and then...with you, with Joey, with the school system, with the world. You need to try to put that aside. Worry about which bus he'll ride the year before he's ready to ride it, because the kid he is today isn't the kid he'll be then. There's no way you can know what he will or will not accomplish between now and then.

Trust me. This is what I have to tell myself pretty much every day, because I, too, am prone to worrying about N's future ALL THE TIME. But every time we hit one of those milestones I worried about before, the challenges we face are so different from the ones I thought we'd face. It's wasted worry. Make your worrying COUNT! ;-)

Of course, that doesn't mean that I don't worry about just this all the time, anyway. N is in general ed, and I'm assuming that's not going to change right now. But third grade is proving to be the borderline between total acceptance from his peers and the beginning of nastiness in the form of teasing and ostracizing. Which I find 'amusing' in a not-funny way, since his social skills are a million times BETTER than they used to be. But thumb-sucking and hiding your head in your shirt when you're in kindy or first grade isn't as big a deal as it is when you're in third, I guess.

N's IEP a week and a half ago ended after three hours with us only having gotten through about a third of what we needed to do. We're back on for another go-round next Friday. I'm FREAKED, because they just can't seem to get a good evaluation of him--the numbers they're trying to feed me make me laugh (again, in a not-amused way), and they don't want to give him much in the way of support in the classroom. I see them setting him up to never reach grade level, and I'm supposed to be happy with that? Feh.

There are plenty of people who know where you are. I don't know if it helps anyway, but at least you have company.

VAB said...

You know, there is something about this time of year that produces more "behavior" and gets parents more worried. I see it on the blogs every year. Something tells me that it is not just the IEPs, either.

Be that as it may, I've certainly had the same kind of nights you've been having and I can only wish that they pass soon.

These are thorny issues that you bring up. We were worried about out guy accepting help in high school, because he had been so dead set against it towards the end of elementary (we have no middle school here). It turns out that, in high school, because he is not together with the same class all day, he feels freer to get help, and loves going to the resource room, where a really cool grade 12 student help out.

I think it is also helpful to encourage interaction with peers who themselves are differently wired, so that our kids can see and feel diversity, instead of just being the diversity all the time.

Social groups for families with kids who have special needs have help us a lot, as have summer placements and just going out of our way to hook our guy up with other kids in the school who are not plain old NT.

r.b. said...

Joey is not alone. There are lots of kids who've walked the walk he's walking. And you are not alone-lots of us have been in your shoes.

It's very frustrating.

Sometimes it helps me to think of other kids I knew growing up who today would have a label. Life might continue to be tough for them, but they make it through. We all do, one step at a time.

Accidental Expert said...

Ah, this all sounds so familiar to me. In my humble opinion, inclusion is overrated -- especially when done half-heartedly or without the proper interventions in place (which in our experience was all the time.)

My son is now in a charter school that is specifically for kids that learn differently. Its the most accepting, encouraging environment I've seen yet.

Hang in there. I know how discouraging this all can be.