Worthy of support

Msk plays on a hockey team for kids with developmental disabilities - the Baltimore Saints. They are having their yearly fundraiser, the Saint-a-thon, this Sunday (3/4/2012). It's a great team for kids that typically don't get to play on sports teams. If you would like to contribute, please get back to me by comment or email (link on right sidebar) before Sunday so I can enter you on the pledge sheet. The team is 501(3)C registered, so you can write the donation off your taxes.

More info is here - http://www.leaguelineup.com/baltimoresaintshockey/files/Saintathon_Release_2012-cmo.pdf

You can also directly contribute on baltimoresaintshockey.org via the "donate" link on the left. If you notate for #45 msk will get the credit, but really, supporting the team is the main point.

If you go to the site, be sure you check out the photos. What a great group of kids!

You can’t principal-proof a school

This post from The Fordham Institute says exactly what I was trying to say in this post.

You can’t principal-proof a school: Why top down evaluation systems are doomed to fail

A school needs a great leader to rise to greatness. No amount of micro-managing on the part of parents is going to change that. If you find your kids in schools that have systemic issues you need to find a different school. That's why school choice is so important in my opinion.

Keep on keeping on

Today was a long walk in the park - msk, the dog and me. On the 26th of February it seemed warm, even though the weather report said today would be the closest to a typical winter day all week.


There were flowers peaking out in many places, and it seemed like a rash choice to me. March snow storms are not all that rare. But I suppose the window of opportunity for these types of flowers is narrow. If they hold off too long and we get one of those early and warm springs they might not get a chance to bloom at all.


A hard choice, that you really can't feel all that secure in, but is pretty crucial and life changing.


I can't tell you how many times both HSS and I have swung back and forth about picking a college. Big, small, debt, affordable, reputation, reality...too many variables for a solvable equation. For msk and this high school path...I'm not sure there is any choice that feels OK. He needs to have a meaningful place in society, but don't know if society wants to make that place for him and these high school choices feel like they are limiting him.


But worrying and flipping and regretting and anger and depression... they don't help. So you put yourself out there and you make a choice and you figure out how to make it work. Because really? I don't see an alternative.

Something new

What is money but a hindrance? Take it, please.

I am absolutely tired of looking at my previous post at the top of my blog, so even though this is half-baked at best, it's going up.

I was talking to another special needs parent about non-public special ed schools. When msk was in a non-public placement we never saw the bill that the school system was paying for him to attend. There were some students who's families were paying to attend, or at least the information for the school said that you could attend with your own payment (as opposed to having a school system pay). The rumor was that the price was in the $60K range - I'm emphasizing rumor and that this was more than 6 years ago, so that's a very vague number.

The discussion the other day was that $60K a year for education was just crazy. I said that you had to look at the payroll and materials before you could know that - I think msk's school had a staff to student ratio of close to 1:1 and that many of that staff had quite a lot of education and training and were probably pretty well compensated. This parent stuck with the idea that the cost was crazy and that it was only because school systems were willing to pay that much that it cost that much. He seemed to think that if individuals were paying the costs would be driven down. I'm not sure that I agree. I do know that if msk ends up getting another non-public placement, it'll probably cost quite a bit, and honestly, that's not my problem to worry about.

A similar thought comes up as we're looking at college costs for HSS. All of the schools applied to, with the exception of the two University of Maryland schools, are basically $50K/yr for 4 years. In other words $200K is the sticker price to get through college. I'm not saying I'll be handing over that amount of money - we'll be getting some amount of financial aid and hopefully some of that will be gift aid as opposed to loans. Still...$200K is a lot of money.

In another discussion with a different parent who's kid is entering college there was a question of the actual value of going to college or the differential value of going to a private college vs. going to UMBC and living at home for example. It was pretty clear that he thought anyone considering that $200K price tag was crazy. I'm not that sure. I worry about the size of University of Maryland. I worry about a "sink or swim" kind of attitude. I absolutely want HSS to live away from home when at college.

So what's the conclusion? Feels like a lot of money will be passing away from us to a lot of other people and I worry about these decisions. I hope I'm not deciding that because it's more expensive it must be better. I don't believe that and I don't want to feed into a system with costs that are spiraling out of control.

Mainly, I just worry.

Catch 22 on steroids

You win - I give up

At the end of this post I said I was going to wait to talk about the joys of trying to get insurance coverage for medical services related to autism. I guess I'm ready to talk about it now.

So, hopefully everybody knows the Catch 22 from Joesph Heller's book. The basic concept it that if you're crazy, you can get sent home from your military service, BUT, if you have enough self-preservation instinct to want to get out of your military service, you're not crazy enough. Another defining aspect is the rule has to be instituted from above, from a bureaucracy that you can't approach or question.

Many things about autism are just like normal, but more intense. A simple question feels like being given the third degree in the police station. A food with an unexpected texture causes gagging. Slightly off-key singing is fingernails on the black-board annoying. I guess it only goes to reason that the autism medical Catch 22 takes Catch 22 and raises it to the next level. You get not one, but two bureaucracies, but that's not all.

Here's how it works:

• You need assessments to get Special Ed services and to get the right services for an autistic individual, you need someone who understands autism* to give neurological or cognitive assessments**
• The only assessments the school system will pay for are from generalist who don't have an understanding of autism
• Your medical insurance will fund neurological assessments, but only if they are far enough removed from education needs to not be deemed as redundant to something a school system would give
• If you contact a medical provider who will be funded by your insurance and ask them to tailor their assessment to educational needs, they will tell you that they have a standard evaluation and that there is no way to do anything different
• If you find a provider who will give you a neurological assessment that is suitable for educational use, they will tell you that they don't deal with insurance companies because they typically won't cover an assessment that is usable, but because of that they can charge about 20% of what a full blown, but unusable assessment will cost
• When you contact your insurance company and ask if you can be reimbursed for a medically based assessment that costs much less than an assessment that they will cover, and you're willing to pay up front and wait for reimbursement, they will tell you that there is no out of network coverage for behavioral health issues
• When you explain that this is a medically based assessment and you do have out of network coverage for medical services they will explain that neuro-psych is not medical

Here are your bonus point questions if you have made it through reading all that nonsense:

1. How many hours of my life have been lost to mapping out the mysteries of this total dead end?
2. Where the money will come from to have a usable assessment done?

I'll give you the answer to #2 - that same big bucket of money that our FAFSA form said we could afford to pay for college every year that I have yet to find.

* - A valid question as far as this "someone who understands autism" goes is how are you expecting to get appropriate services from a generalist? I believe that if you have a kid like msk who's generally cooperative and if you have a provider who is willing to do some research and follow the lead of the kid and if  the provider genuinely wants to presume competency both from the kid and the parents, services can work out quite well. I know there are a lot of if'sinvolved, but it is doable.

** - I want to emphasize that we're talking about neurological assessments - pretty much the heart of what it means to be autistic. Assessments that are on the edge of autism and deal with symptoms (for example speech and language or an educational assessment from a special educator) can have valid results when there's not a lot of autism-specific interpretation going on. In terms of cognitive assessments, IQ results for autistic individuals are notoriously unreliable. I you don't believe me you can google it or look here or here.

Overwhelmed

Beaker's stressed

As soon as I came in the door last night I was copying income tax forms and trying to figure out where to mail what. This is the last part of the financial aid process for three schools. Then there's another school that only wants you to fill out their application if you get accepted. Then there's the one school with a scholar's program that has a separate application from their main application, with a deadline a month and a half later after every other deadline was over...totally missed that one.

Honestly, this part of the process seems needlessly complicated. And stressful.

They want to know how much I make and how much I save and how many dependants and if there are special education expenses for a sibling and whatever else...fine. It would be nice if all the schools and scholarships and whoever else wants to know could get together and just ask me once.

And then there are all these obscure scholarships that keep on coming by email that I can't keep up with. Why does this need to be so hard?

I'm stressed and I'm snapping at my husband and HSS whenever the topic of financial aid comes up.

Last night I had a vivid dream that HSS had decided to apply to another college without telling me and I realized I hadn't included that college on the FAFSA or the CSS. It seemed so real I had to ask this morning. I believe that qualifies me for officially cracking up.

Plus there's the joy of trying to get insurance companies to pay for medical/behavioral assessments as we get ready for the next round in the wonderful world of IEP meetings...but that's a topic for another post on another day.

The path ahead

Ease on down, ease on down the road...

One thing the last four years have taught me, is that an open heart and an open mind can accomplish a lot in a situation where autism-specific experience is pretty low, at least as far as msk's education goes. We've jumped a lot of obstacles to get on, and stay on, a path of inclusive education. I will happily talk about the merits of inclusion for kids with significant disabilities with anyone who wants to. We've also become pretty good at supporting schools and teachers that support msk. I mean both general support of the school, and specific help in understanding and working with msk, which in turn helps any other special needs students who are following a similar path. All in all, I think everyone involved has grown a lot from the experiences involved in msk's inclusive education. I know I certainly have.

There is however a limit to blazing new paths and figuring it out as you go. Given the Grand Canyon-like split between services when in school and services when you finish school, it seems like that limit might be high school for msk. It's sad, because inclusion has pushed and pulled him to such advances in academics. And behaviorally, he's doing amazingly well too. The guy who couldn't stay in a seat, who couldn't keep from saying those words that made all the other kids laugh, who we worried so about eloping? He's now getting his work done, answering questions and getting on the honor roll.

But I need to be honest, and with a kid with the kind of challenges msk's got ahead of him, we need to understand the system of supports that he can access. What we need to find is a school that still cares for him and values him as the last two schools have. He also will still need real academic challenges and peers to model. But this is a kid that's going to need support once he turns 21, probably lots of it. We need to be planning for that transition from the day he starts high school. We need to learn from people that know where to find vocational training and a job coach. We need to find people that can help him reach his full potential, whatever that turns out to be.

I know that finding this school and getting msk settled and thriving there is going to take a lot of hard work, but work seems a lot more appealing than worrying about changes.

Acceptance #3

leaving tributes

So yesterday HSS received her third acceptance letter, or email, or really a web-link to an acceptance page. University of Maryland has a great engineering program and my college savings will pay for 100% of the tuition, so that's pretty good. It's a scary-big school though, so I guess that's a decision for down the road. Acceptance-wise HSS is 3 for 3, but we've still got 5 more colleges to hear from. And financial aid packages as well.