Life With Andy

So in the swirl of life, special needs, IEPs, and spring springing boing boing boing, we are discovering that among Andy's issues, the child can't see. His eyes do not converge to focus. We'll get to see what it looks like Monday (there is some confusion about whether it is THIS Monday or NEXT Monday, but it's coming), but in the meantime, its been explained to us that he basically can't see anything in a strip about 12 inches wide, six inches to either side of the middle. You know, where you would look to do things like read. Or write. Or, well, anything in front of you. He can't focus there.

We have no idea how he has trained himself to cope with this issue, but he has. After all, it is the way he has always seen, and people expected him to be able to read and write. So he learned to do it. As far as we can figure, he uses a lot of peripheral vision and approximating based on the blurry mess that is in front of him. No wonder he gets so frustrated with reading an writing, though! Apparently, he has gotten through so well because he is a clever little fellow.

The answer will be vision therapy, which will basically reprogram his brain and his eyes so that they work together and converge properly. After that, he will need to be completely retaught to read and write. The good news is that his frustration level will go down, so we should see some alleviation of attention deficits- then he can channel all his awesome energy levels into relearning these skills, and getting back to speed at school.

We now have his IEP in place. It was a little odd putting together the powerpoint, because it looked eerily like the one we made for kindergarden, when we were told all these issues did not require an IEP. Same issues. Just two years later, with a new label- "dysgraphia." You know, if they had listened to me two years ago, and looked into this properly, we wouldn't be needing services now. But that's now water escaped under the bridge, I can't take it back. Here we begin.

Long Term Plans

I posted my Goslin meme early, because I didn't think I'd be around my computer with my brain on straight long enough to post it on time. Then I got smacked in the face with yet another report of despair dragging a defenseless autistic young man to his death at the hands of his primary care giver: his mother. It is the kind of story, the way it is being currently presented, that makes me cringe.

There are certain details that make me downright red in the face. The young man had been in a day program with an adult component, and the mother pulled him from it 2-3 months ago. Why? And when she had trouble getting him into another program, why didn't she contact the old center? We need more information there. Why was he pulled without having another place to go set up? That's about as wise as quitting your job without another lined up when you live paycheck-to-paycheck, then wondering why you can't pay your rent. Was there a problem at the center? Had she tried to get him in the adult service and been denied? What happened there? It doesn't make sense. Then to break down in only 2-3 months of care? There is something wrong there, too. I know lots of folks with severely disabled kids who do the day in-day out thing for years before they even start pulling their hair out. Again, not enough information. Was she completely unprepared for the responsibility and effort? Was his behavior particularly challenging? The descriptions of the young man do not suggest that, but we simply do not know. (And challenging behavior is still no reason to kill someone.)

And in the end, who has the right to pull out a gun and kill another human being, for any reason? Call me cold, but the whole murder-suicide thing? I'm not very sympathetic to the murderer. It is one thing to take yourself out- that is tragic enough, and serious enough. I have very definite thoughts about suicide, and I am with those who say people do not "commit suicide"; it is more appropriate to talk of someone being "lost to suicide." To take someone out with you? You are moving into a realm beyond any reason. Obviously, when you are in a state where you are suicidal, you are already not in a "typical" rational state. It is bad enough to lose someone to suicide. To lose your family to suicide and to murder at once? My brain goes scrambled-eggs just trying to wrap it around such a concept. You never have the right to kill anyone, unless they are about to kill you. And I mean directly. The whole thing makes no sense. We lost two people in this incident: a young man who was doing his best to live his life, and his mother, who decided to end both lives for reasons and purposes unknown to us.

But it is something that sets me thinking, as I watch Joey and think about his upcoming IEPs and his needs and progress and "current level of performance" etc etc etc. There is much talk about kids "aging out" at 21- but this is only if it is decided that the school is still supposed to be supporting your child with educational service after age 18. With kids like Joey, who are academically on grade level or beyond, it is a much harder fight to keep them in the educational system beyond the age of 18, when their typical peers are graduating. And either way, what happens to Joey after graduation, if he is not able to live independently (yet)?

Yeah, I haven't gotten much sleep lately. Thanks.

Most of my plans and counterplans and back-up plans consider this possibility. What if Joey cannot go out on his own yet? Or, since we have no clue what the future holds, ever? Am I ready for him to stay with us forever? We aren't talking about the kid who never gets it together to move out of mom and dad's basement (though that is also a possibility- for either child- you never know). I'm talking about the possibility of Joey needing extra support, and enough of it that putting him in his own apartment would not be a good option. What other options might be out there? Am I ready for him to stay here?

I don't know too many parents who have adult children or adult loved ones with need for support to the point that living independently is a limited option, or not one. I have a friend who started a group home for her adult daughter- she had the resources to do that, and it has worked out nicely. I have a colleague who surprised me one day when my Joey was first diagnosed by revealing they had an adult child with neuro-developmental disabilities living at home (and that their adult child brought much joy to the family! Thank you for sharing that part, too!) We have a neighbor with a younger adult child who has a job with a local company and still lives with them, and that seems to be working out well for them. Would it then be a disaster if Joey remained here with me?

Hello- no. I love Joey, I love being with my Joey, and we are very very very fortunate that 1. he is Joey- a delightful and wonderful human being and 2. he functions currently at a level where the issue of supervision is not as dire as many other families I know. Yes, I have to keep the doors locked, and we have our wild days, but for the most part, Joey is Joey, and he lives in a world that fits comfortably within the family scope and understanding, just like all the other family members, no problem. In fact, if Andy develops needs that meant he couldn't live independently, I'm ready, thinking about how we would all live here together as four full adults; but I know the possibility is higher with Joey than with Andy.

Then, what happens if something happens to me? Or more correctly, when something happens to me, and to JoeyAndyDad?

And that is when the planning goes into overdrive.

Joey is nine years old. We're over halfway to 18. We don't know what the world will look like in nine years. More like 8 years. What plans can I be considering and implementing now, to be sure when Joey ages out and I prove to be mortal like everyone else, Joey will still be able to enjoy his life and live it? That he will have resources to recover from the loss and move on? A better plan than "Andy will have to take care of that"? Yes, its time to start thinking about what balls might need to be rolling to prepare for the future. after all, they aren't little long- and once you are an adult, you are an adult for a long time (we all hope). We all know adult services are seriously lacking, everywhere.

Seriously lacking. Or non-existant.

So it is time to get started, since I doubt I will be winning the lottery anytime soon to start my disability school and family center. Though I admit to buying tickets. After all, that money goes to fund the services we already use.

My Goslin Meme, Slightly Early

Spread the Word

It happens all too often when I am out in public. The grocery store. The park. A museum. A bank. I don't even know why I bother to go into Walmart. The r-bombs, dropped everywhere, all around, no thought to anything, or anyone.

Going online, its like a blitzkrieg. That's so KABLAMO! Really? You are so WHAM! Come on, don't be such a KAPOW!

Gotta love the responses when you say something, too. Did you know you can offend someone, even when you "don't mean to"? That something can be hurtful, even if you "don't mean it that way"? That referring to yourself by a derogatory term does not make it less derogatory and insulting?

Then there are the folks who mean it just as they say it, and have no qualms with telling you that people with disabilities don't have the right to be educated, or accommodated, or even to live. Waste of breath, waste of resources, waste of time. After all, what do kids in special ed have to give back to society, anyway, after we spend so much money on them? Why not just let kids with severe physical issues just, well, die?

Going through life seeing red is really bad for my blood pressure. And I already have enough issues with my blood pressure, thank you very much. The sheer disrespect the use of this term spreads and reveals is enough to make one run screaming into the night, without people actually trying to defend it. And people who really think people with disabilities are a waste of space? They forget that it could easily... easily... be their kid. Their sibling. Their parents. Them.

And the "oh, I don't mean Joey" excuse? Yes, you do. Because that term is tossed at him all the time, used to refer to him, whispered behind his back and snickered at him from across the room all the time. So yes, when you are using this term, you are referring to my son.

And you know the real kicker? Joey doesn't even have intellectual disabilities. It isn't a term just about intellectual disability. It is a term used to degrade and dehumanize anyone who is seen as different, who talks a little differently, acts a little differently, is interested in different things or in different ways. It dismisses everything about people that is positive, constructive, and human. Joey's talents in math, in reading, in visual perception? Out the window. Because retards don't have strengths. That is how that term is being used, understood, bandied about, and wielded. Useless, ugly, stupid, irritating, waste of time, waste of space, contemptible, odd, crappy, disgusting, slow, insignificant. That is what you mean.

That is what you say about my sons when you use this word.

Please. Stop.

Message Boards are not good for my blood pressure

Tired of reading jerkface comments on news stories about ADHD and autism from people who scream that one or their other (or both) are "overdiagnosed" or don't exist. I also get tired of people who stomp their feet over the interventions used to help kids learn to cope, focus, and self-regulate. I get so tired of people who chose to remain ignorant.

It can only be by choice at this point. The extensive awareness campaigns for autism and ADHD in the popular media should at least by now have gotten through the thickest skulls that there are people out there who are different, and who may need extra support- therapies, medications, whatever. But no. Idiots and selfish, ignorant numbskulls remain.

Trying to speak reasonably to such people can be an exercise in blood pressure control and deep breathing. After all, the majority of them are not reasonable themselves. They send you to websites that are so obviously hate-mongering snake-oil-selling conspiracy-theory gibberish that you wonder how they are getting through life without a room full of diet pills and turnip twaddlers. Or maybe they haven't.

Here's the truth, folks: ASD and ADHD are both very real, and they affect both children and adults every day. Not everyone who are ASD or ADHD require medication, but some do. Occupational therapy, speech therapy, physical therapy... there are lots of interventions out there, far more than 30 years ago when I was a kid, and I thank God for it. Because seriously, that question, "where were those kids thirty years ago?" is plain annoying. Where were they? ASD kids were labeled weird and mentally retarded (using the term of the time), and all too often locked away, sent to special schools or self-contained rooms, or bullied out of school altogether. ADHD kids were labeled disruptive, often became angry, and as they grew older, often fell to self-medication through illegal substances or alcohol abuse. Growing up believing they were lazy and stupid, many resorted to extremes of behavior, and even suicide. Yeah- those kids.

Today, those kids can be supported and be functioning participants- very valuable participants- of classrooms and communities.


I really wish these people would go volunteer for their local special ed classrooms. They would learn SO MUCH... including some lessons on courage, perseverance, and humility.