School program cancelled for next year

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No, that would not make sense at the moment

The story so far:

Teachers were pushing us to get a special ed classification for our son since second grade. I did not see any cause beyond the fact that he was bullied and did not work well in groups. Since the groups he was supposed to work with in class were the same people who bullied him in recess, it made sense to me that he would not get on in those groups.

Several years of things getting worse and his difficulties writing legibly becoming more and more apparent and we consented to a child study team and 504 plan. The bullying got really bad and we moved to a different school for fourth and fifth grade. The principal there pushed very hard for us to have him evaluated by a developmental neurologist, saying very convincingly that she saw some aspects of his behavior that suggested some underlying neurological issue. My wife and I found this almost impossible to believe. He was bright, lively and interacted with us in what we perceive as a completely "normal" way. He had a few quirks and some serious sleeping disturbances, but none of that seemed to us like some big diagnosable issue.

Another aspect to this is the racial politics in our town. We are a mixed race family and there is a history in the town of race-based uneven access to educational resources. A perception exists in the black community that there is lingering institutional racism and there is significant data to back this view. A psychologist we were taking our son to to help deal with the impact of the bullying told us that the schools funnel a lot of gifted young children, particular boys, into a second rate special ed system where they are neglected. The same issue in white children are handled with AP class placements and therapy.

The therapist advised us not to allow our children to be given any sort of classification of special treatment, 504 or IEP. I should note hear that our son tested several grade levels ahead in reading comprehension and was a top math student, though his disgraphia resulted in Cs in language arts and his poor group skills had an impact on his other grades. The standardized testing on math and science were clear indicators of a very intelligent student. So the therapist's story made a kind of sense, despite the obvious logic of the school's position.

In any case, I was convinced by the principal to take him for a neurological evaluation. My wife did not want to participate and did not go with us. To my enormous surprise, the developmental neurologist and her colleague (who did an independent evaluation on the same visit) told me that this he had Aspergers/ASD. When I said I could not believe it she told me that there was really no possibility of error, it was immediately obvious to her and her colleagues and there were many specific symptoms that were readily apparent to a trained observer. She gave me a list of reading.

When I left that office, I was in shock. To be honest, I did not believe her. I thought there had to be a mistake. But there was a doubt in my mind, a possibility that she might be right. So I studied and as I did I asked my son's teachers many questions. Then I began to understand. His behavior in school was very different than his behavior at home in ways that were not detailed in any report and that I could not imagine. He spent every recess in the hall or the library, avoiding all other children and talking only with adults. He had meltdowns, something I never saw at home, and had to leave the classroom to calm down. He was equally estranged from the most hostile and friendliest students and had frequent misunderstandings with the kids who were most favorably disposed toward him.

I began to see that the evaluation was correct. The principle told me that he should go to the middle school he now attends because of the program that was just cancelled. They would create an environment that would let him handle the increased rigors of middles school while developing strategies for managing the negative impact of his ASD. I went along with this plan and convinced my wife to do the same.

To my surprise, the mainstream teachers and his special ed teacher (who sat in on all his classes) reported that he had some of the more severe symptoms they had ever seen. The special ed teacher was particularly disturbed by his banging his head on the concrete wall in the hall when he was severely frustrated and melted down in class. Over the course of the year, he learned to extricate himself from the most stressful situations and go to the program room where he could calm down in a dimly lit, comfortable environment. The program staff helped him learn coping skills.

If he did not have the refuge, we would have had to come to the school and take him home for the day when had meltdowns. He would have missed a lot of school the teachers in the mainstream classes would not have been able to work with him without the help of the program staff.

By the end of the year, he had a 1-on-1 aide, the program staff and the regular special ed inclusion teacher working with him. As far as we can tell the program staff are to be replaced with a single staff LCSW next year. The program had a male staff member and a female staff member and several tracks for different kinds of problem. There were kids who had violent behavioral issues who were in a completely different part of the program than the kids in my son's group. If all these kids are going to be thrown into one program with one LCSW next year, I know it's not going to work.

I wish he did not need any of this and could cope on his own in class, but it just isn't the case. The default answer for unexpected behavior by kids in class is detention. It is obviously punitive, not therapeutic. That is not going to help.

The terrible part for me is that everyone agreed he had made huge progress over the year and now all the supports that made that possible are being changed.

During the process of learning about my son's autism, I discovered my own. Maybe it is part of my rigidity that I find this kind of change hard to handle-or maybe it is just hard for anyone to handle huge shifts in support system that are suddenly introduced.

I guess we have a month or so to find out more details about what shape the new system is supposed to take. In the meantime, I feel I have to develop some contingency plans. I can't wait until it fails and THEN have to find another way to get the best education I can for my son, and leave him in a dysfunctional system while I do research. Nor can I just hope that all his issues will go away over the summer and he will no longer need supports of any kind next year. That seems improbable and to plan for it would be irresponsible.

Nobody said being a dad would be easy. This is part of what isn't.

Thoughts (for what they are worth)

This kind of change is really hard to deal with. It is possible that it would be still possible to individualize things under the new system, but you will need more information. If they have the aide codified into an IEP, and you trust that they won't assign you a different person who is less effective, you might be able to carve out something that will work.

If I am understanding right, you had this other system put into place based on the evaluation alone, but without a formal IEP to avoid racially motivated unequal treatment. I can understand that b/c I have observed that the non-white kids in our SPED department here, seems to be cut less slack, and are dealt with more punitively than the white children. I don't know that not having an IEP would make it any better in that regard or not. I have observed racism here, in and out of SPED. So, I don't have an answer for this portion of things. I do know that not having the protection of an IEP can be a problem as well, so how to weigh that? I don't know.

Is there anyone there you can trust who will give you unauthorized advice? Sometimes people will imply things in a subtle way, and you can infer whether things are going to be bad or good from what they say.

I wish I could help more, but what you are doing: gathering information so you can make a relatively quick decision on how to proceed sounds like all you can really do.

In your neck of the woods there might be more options in terms of different schools that might be more appropriate, that you could force the district to pay for. Where I am, when things went to h*ll, were were stuck with homeschooling if I wanted any kind of serious academics---much less accelerated materials. I do agree that whatever you do, should have a good possibility of success so you don't have to make changes mid-term. I am very grateful we managed last year until the end.

Edited for literacy and clarity as per usual.

Last edited by ASDMommyASDKid on 22 May 2014, 10:59 am, edited 1 time in total.

Your whole district sounds upside down.

An IEP should be a good thing, one that gives you more flexibility and choices and supports, not a bad thing. But I haven't had to deal with racism towards my family and, thus, will take your therapist's word for it.

What are they are have they been doing for the dysgraphia? Because of the IEP, my son had OT through the school and the OT taught him to type. Before that, he was allowed a scribe in class. We also now have approval for SAT accommodations, a process that requires a recent professional's report and help from the school (missed getting it in time for the advancement placement English composition exam, however; my son's arm was actually injured trying to write that test, but he did it).

We discovered the ASD in our family by way of having a dysgraphia issue, too.

What my son had in middle school, which ended up having similar effect to the special program you had this year, was placement into academic support one period a day, that he was allowed to use as a study hall. This was a quiet time for him and he pretty much worked on his homework, and also used the class to finish written exams and papers for English and other classes (this was their way of giving him extra time). He also worked extensively on proofing and editing his typed work. Would it be possible to get something like that?

Have you ever considered moving to a different area? How tied are you to your location?

Homeschooling can be a great option, but as you approach High School, the material is going to get very difficult to teach; you will have to actively find tutors and specialists, which is fine if you are in a big city, but might be difficult in some areas. College bound students usually get through calculus in High School now, and even though I was a math wiz when I was younger, I can't imagine trying to teach that subject. And, well, my son has thrived socially in High School; it is so much better than Middle School. He has found his "people" getting involved in drama, as have several of the other ASD kids he's grown up with.

Last edited by DW_a_mom on 22 May 2014, 10:49 am, edited 2 times in total.

I also wish the institutional racism issues weren't real, but I've seen them, too - and our school system prides itself on being diverse and inclusive. I am so sorry. There is also the extra layer that schools may assume the African-American community is automatically suspicious of SPED (possibly because of a guilty conscience, as SPED has historically been inappropriately applied) so schools tend to react more defensively to African-American parents. I worry a lot about the kids I know in our school system who are spectrum-ish and of color.

I second or third the recommendation to get an advocate. What state are you in? If you like, PM me - I'd be happy to do some googling on your behalf (I have good google-fu, particularly as regards this particular issue.) Many states offer free SPED advocates from the state board of education, and in states that don't have those there are often multiple not-for-profit organizations that can provide one. If you can afford to pay for one, I'd still look into the free options at the very least so they can give you a recommendation.

Schools use "budgets" as an excuse all the time, but the reality is that they have options - they're just not willing to exercise them. Your child is protected by the Americans with Disabilities Act, even if he is academically gifted and high-functioning. The school legally must meet the requirement of "least restrictive environment" and it sounds to me like having one person doing the job of six is antithetical to that. At the very least, lumping him in with students who bullied him is an extremely restrictive environment!

Don't start with a lawyer, that's the nuclear option. Start with an advocate who knows the system - for instance, many retired SPED teachers do it.

Maybe he could use one of the now-empty therapists' offices as a quiet space to calm down.
(that may sound sarcastic but it's not)

We have this as well - where we are it's called "support," because the kids needing academic support get it there - but DS is allowed to sit by himself and do all of his homework. They even allow him free access to the in-school internet as long as he's finished with his work, so there's a built-in reward - has worked like a charm for us.

I mention mainstreaming, because I think that mainstreaming is good goal as a child grows up, and high school would be a good time for mainstreaming completely to prepare for college and adult life, which means that junior high would be time to plan for that.

I had a lot of problems in 7th grade, but part of what helped me was not more help, but having things totally messed up and dysfunctional, so I would have to learn to do things that are hard for me and have motivation for these instead of relying on others or staying in my comfort zone, which is a concern, because it seems like a kid could get used to having aides and various accommodations and not start developing some of the adult skills that will be needed by college, even by high school, with all the things that kids do in high school from academics to extracurriculars to applications.

Growing up, my parents were very accepting of my autistic traits that they also have, but they were also pushers, as in pushing me to be independent and self-regulatory, including some bizarre things like making me make phone calls to complain about phone bill overcharges when I was ten and make other phone calls that ten-year-olds wouldn't normally make, but that surely helped me with my communication skills and confidence, even though I didn't know it at the time.

I get what you are saying, but I think based on this and other posts made by the OP on other threads, that this particular strategy is probably not going to work for this child, at this time. The "sink or swim" method can work in certain circumstances, but it will not work for all kids at all times. The OP's child was mainstreamed, and undiagnosed until relatively recently. Then it was discovered that he needed support once the skills required were too much for him. He tried pushing through it, and it wasn't working. Sometimes if you see something is not working, you have to throw the kid the life-preserver. How long you let the kid struggle is a judgement call, certainly, but I would trust that the OP knows his kid well-enough to know he still needs help.

What I suggested wasn't sink or swim, ackshuly.

I am more suggesting that having too much daily support can prevent or delay development of skills and self-confidence which then further helps development of new skills throughout life, but parents and teachers should teach the skills instead of leaving the child to figure things all out for themselves by sink or swim. I see some threads here about the balance of pushing vs. protecting, and I would say a good balance range is 70-90 pushing, 10-30 protecting, depending on the child, but pushing should be greater than protecting, if advancing in skills and independence is the goal.

Also, another thing that I noticed here is avoidance of meltdowns by parents, but often, it is good for autistic kid to have some meltdowns, as that is just one of the ways to let things out, then move on in life. At non-profit with lower functioning kids, the teachers let the kids have mini-meltdowns when first seeing material that was unfamiliar or changed, then after the mini-meltdown was over (this was emotional response to change), the kids seemed to be fine with the thing that had caused the meltdown in the first place. But not trying the new material was not an option, unless the teachers agreed that the new material was not very good or the learning value was not very high.

In the parents forum, I like to suggest alternative ways to look at things from the perspective of someone who benefitted from these ways, and they might not be applicable to Adamantium's son, but might be useful for someone else reading.

I think the right balance depends on where the child is starting from. A child that has really struggled and is checking out NEEDS to have more protecting than pushing so that they can build a sense of trust with the world that they can succeed. You can't do your best when you feel you are drowning. Once the child has gotten secure that it will be OK even when they flail a bit, then you can start pushing.

My son advanced a lot more in skills when we were supporting and protecting him. He needed that. We basically pulled the rug from under him at the start of the school year before this one, and his grades have suffered quite a lot, which will cost him options in the future. Still, he agreed with us that he needed to know what he could do on his own in pursuit of independence, and because of the solid base he felt ready to do so. But I would not want him dealing with these disappointments without that solid base, and that base was built in a protective environment. Figuring out the timing is always tricky, and part of me wishes we had supported him longer so that he would have better college options, but at this point he needs the independence more than he needs the success, and so it goes. Life is a journey.

I know that he will not tell you that supports should have been pulled earlier, or that he should have been pushed more earlier. He feels that things happened at the right time, and he's always been a fairly self-insightful kid.

I just wish school didn't overwhelm so much at times. He is so smart, but he shuts down when overwhelmed. When he shuts down the work doesn't get done, and when the work doesn't get done the grades tumble. That he is having to learn for himself how to balance it all in the same years he is earning the most important grades for college admission is heart breaking to me; it is limiting his options fast, and there is nothing I can do about it. He wants to figure it out himself because he knows that is the world he will graduate into: one where he has to handle this balance on his own.

As for avoiding meltdowns, no one can handle a kid of a certain age and size in a full blown meltdown. Thus, it MUST be avoided, at least until the child knows how to meltdown in a less destructive manner. This isn't a choice. It is self-preservation.

Last edited by DW_a_mom on 22 May 2014, 1:51 pm, edited 1 time in total.

So I have explained things badly.

He has an IEP. We went against the advice of the therapist and with the advice of the teachers and child study team.

The principal at his elementary school said that she thought this program (the one now cancelled) would be really good for him. She was concerned that he would not adjust to the more intense atmosphere of middle school without it and her arguments made sense.

The situation now is that all of his teachers seem to be upset by decisions that school board made.

As for mainstreaming, he has always been in a mainstream class. He went from having no classification and no provisions to being in an inclusion class with an extra aide to having a 1-1 aide, but always in a mainstream class The goal is to get him to the point where he is completely mainstreamed and is making the most of his educational opportunities.

I really don't know what to expect at this point.

His special ed caseworker sent me a note apologizing for the lousy way the district has handled this.

Nice to know you have at least one professional in your corner. Someone who knows what is needed.

I think the only time I really got angry with anyone was the one meeting the district head attended. Geez, what a stubborn bureaucrat. We had a no cost alternative on the table that everyone agreed was the best option for my child, and she was trying to veto it in the name of the rules. Thankfully, I made my case well enough that she eventually realized how ridiculous she sounded and backed down. But, man, it was so ridiculous. The way she saw things and thought about them; unbelievable.

I am guessing the district is driven here by cost. Which means that the best way to get the program back is to show that alternatives are actually going to cost more, when you count in all the indirect costs. Think of all the things the school would have to do to create an equivalently suitable experience for your child, and then tally them. Include the costs in revenue (including grant and award options) if your child has to miss more days, or gets lower grades (here attendance drives revenue from the state, and grades drive access to federal funds). Get the district to see how it harms itself, not just your family, if you can. That is how I win arguments.

Sorry, I misunderstood.

It is possible that the person who sent you the apology could give you more information. I think that's the route I would take.

He would, but he did not find out until this morning. I found out yesterday. I suspect that their decision not to tell him until after the change was know to a lot the children he works with and their parents is part of what irked him.

If your son is making gains on skills with 1-1 aide, then that is good. Does he often get opportunities to use the skills that he gained without the presence of the aide?

That would seem ideal to me, an aide teaching skills, with chances to use those skills independently of the aide, so eventually, the skills have been learned, and can be applied without the aide.

How much pushing vs. protecting a child needs is usually unclear without trying the pushing and seeing what happens. I had a lot of social/communication problems in childhood and executive function problems in junior high, and I don't think that I would have learned as well to learn to speak/communicate without pushing when I was 8, 9, 10, then manage life tasks when I was 12, 13, 14. I feel like I am always pushing myself, and I like having others push me and put pressure on me. Now, I push a lot when it comes to research, basically going into unknown territory without people or knowledge to help me, as it's up to me to gain the knowledge.

Oftentimes, school districts make budgetary-based decisions hoping that parents will just roll over and take it - it works often enough that it's a good budget strategy for them even if it makes them heartless bastards. It worked in our case for several years until we wised up.

(DW is right, and my son is the posterchild for it: he had no supports at all and spent a significant amount of time in various offices (principal, social worker) not to mention all the time his teachers had to spend getting him out of the bathroom, solving disputes, etc. Last year we loaded up on supports and he did fine, no more wasted effort or classroom time - and now we've removed most of them because he doesn't need them any more.)

At any rate, the strategy against budget issues is to remind the district, subtly, that lawsuits are more expensive than appropriate supports - and that they are charged to provide appropriate supports by law.

The way to start is by making sure THEY know you know the law - you don't need a lawyer, you just need to send an email copying everyone along the hierarchy (so, starting with your child's direct service workers, then the school's administration, then the SPED supervisor, then the superintendent.) Make a polite statement that you are concerned that this change in programming will not provide your child the free and appropriate education (FAPE) he is entitled under the Individuals with Disabilities Education Act (IDEA) and the Americans with Disabilities Act (ADA.) If you can get a group of parents together to express this concern, that will be even better.