Prayer Request

Evelyn's pulmonologist visit was moved up to yesterday. Her mom says: "Pulmonologist visit went good. He was definitely alarmed by the size of her tonsils. He is getting the results of the sleep study sent straight to him, and then he is sending us to the pediatric ENT at Balboa so we don't have to deal with the idiots at Camp Pendleton Naval Hospital."

Prayer Request

Please pray for my cousin's daughter, Evelyn. Something keeps making her stop breathing. Had an escort to the hospital this morning. I'm not sure if this was a military or civilian hospital. Last time, military doctors said there was no immediate issue. They are waiting to hear back from chain of command. (Evelyn's dad is military.)

IEP meeting next week

GL's IEP meeting is next week. Mama Bear won't be able to make it, so we need to discuss our concerns together, so I can make sure they're addressed. High school has been an overwhelmingly positive experience for him. Despite a major setback when his meds stopped working, he has adjusted rather well. I like this school's SpEd department's emphasis on independence, living skills, and functioning in the community skills. I will be focusing on getting him the services that were in his IEP this year that he never got. Things like PT and OT, which his insurance cut off because the school was supposed to provide them, which the school wrote into his IEP, but then never provided because he was on a limited school day because, well, because the school didn't want to deal with him.

He is now up to a full day two days a week, and three-fourths of a day each of the other three days. I plan to insist on a full day, five days a week for next year. He hasn't had any academic work at this school yet. From what I've seen, none of the SpEd kids get much academically unless they're mainstreamed part of the day; then they get whatever's offered in the classes they're mainstreamed for. The other SpEd kids only get one academic period per day, and it seems pretty lightweight, not to mention aiming for the middle of the class (there's only one SpEd class at this school) and missing most of them. The academic period is the one he's still missing. The two days he's there all day, he has gym that period.

I was not disappointed in the academic offerings for SpEd, mainly because my expectations were so low. There were three main reasons we home schooled him as long as we did:

1. Middle schoolers can be remarkably cruel to anyone who's different.

2. He was learning well at home. I didn't expect the school to teach him much of anything other than how to function in a classroom, which might help with his transition to employment. Whenever we talked with other special needs parents, they were spending more time fighting the school to get their kids' needs met than we were spending home schooling. We did not enroll him in public school until I felt he had learned all he was capable of learning. This came about the end of seventh grade.

3. Since transitions are difficult for him, I did not see the point of transitioning him to public school in eighth grade and then changing schools for high school the following year.

As for behavior management, although we spent hours detailing his behaviors, their antecedents, what works, and what doesn't, they seem to insist on learning by trial and error. It feels a little like when a stranger wants to give you advice about your spectrum kid because they saw Rain Man, but it's worse, because they really think they know more about your kid than you do, because they spent years in school getting book learning about the stereotypical textbook kid with autism. It's enough to make me want to send them this graphic, which I stole from Tom at  Adventures in Aspergers:

That said, I've had to be diplomatic in my approach. This is a small school in a small town. There is only one SpEd classroom and only one SpEd teacher. The PT, OT, and SDPE teacher are shared among the elementary, middle, and high school and, I think, several other schools in the district. When I pass GL's guidance counselor or the school psychologist, or the school social worker or any other of the thirteen people on his IEP team in the hallway, they recognize me, call me by name, and ask about him by name. If I alienate anyone, that's the person I have to go through to get that particular service. I can't replace anyone on his team without transferring him to a different school. At this point, his teacher and all the classroom aides like him and think he is doing an excellent job. He fits in reasonably well with his classmates. Enough mainstream students volunteer in his classroom that he can't walk down the hall, or even around town without meeting one or more of them, and they greet him by name and take an interest in what he is doing. He considers them his friends. Without exception, the staff and student body have been friendly and kind. So when GL isn't getting everything he needs, not even certain things that are in his IEP, I have to intervene, advocating for services, but in such a way that the other party thinks it was her idea.

Why we home schooled our autistic son

Year after year, we faced skepticism at every turn about our decision to home school GL. First we would get a halfhearted defense of the idea that only a professional can teach a child, especially an autistic child, to read and write. (When we had him tested for public school enrollment, those very professionals were amazed to find his reading, vocabulary, and verbal skills far beyond what they would expect, given his cognitive abilities. His math skills are much more in line with what they would expect. His handwriting is messy, which is not surprising, given his poor fine motor skills. They are providing PT and OT. And he can't spell worth a darn.) His skills are all over the map, but patient teaching and individual attention day after day, year after year, from someone who knows him very well, and with no change of teachers in ten years, have allowed him to make the most of the abilities he has.

When they see that line will fail, everyone throws down what they believe to be the trump card: "But what about socialization?" It has apparently become an article of faith in America that:

1. Social skills are the sine qua non, the ne plus ultra, the raison d'être, the 42, and the e pluribus unum, of not only education, but employment, life, the universe, and everything,

2. Public school is the only place social skills can be learned, 

AND

3. Unstructured social situations (the playground, the locker room) with little to no adult supervision, where the kids are encouraged to "work things out for themselves" and adults don't generally intervene until there is bloodshed, a broken bone, or severe bruising, and then more likely than not will take the side of the aggressor, are the best places to learn social skills.  (Bullying and not getting caught are social skills, after all.) 

Call me a heretic. I believe the purpose of education is academic learning. I've met plenty of socially well-adjusted home schoolers. I've met plenty of socially inept people who still earn a good living. There is more to life than socializing, which I believe is overrated. The happiest and most productive members of any group are those who first know themselves well as individuals. God is more concerned with your treating people ethically, morally, and kindly than with your making them like you. 

People on the autism spectrum don't just lack certain social skills their peers take for granted, they often also lack the ability to read the social cues by which their peers typically learn these skills. If they can't absorb these skills by osmosis, they must be explicitly taught, which most public schools are slow to do. Expecting a child with autism to just pick up social skills along with academics, and without being taught is like expecting a child with extremely poor vision to learn to read without glasses. Expecting him to learn social skills on the playground or in the locker room is like teaching him to swim by nicking an artery and throwing him to the sharks.

I've seen situations like this one happen far too often. To a bully, an autistic kid is the perfect victim: www.helpinghandschildren.com/zform/Bullying.pptx

(He also has OCD.)

These facts, coupled with the facts that GL will do anything other kids tell him to, and confess to anything he is accused of, whether he did it or not, led us to keep him out of public school until now, even if it meant giving up services he would otherwise qualify for. Looking beyond high school, his options are to sit around watching TV all day, while someone else pays the bills, or enter some type of vocational program. He may or may not be self-supporting, but he needs useful work. (I suspect he will make some money, but not enough to live on.) He's gone about as far as he is likely to go academically, but at this point, the public school looks like our best connection and transition to vocational programs. We have enrolled him with fear and trembling.

When we made this decision, we waited a year to enroll him so he would be entering high school. The cruelest people I've met are middle schoolers and adults who never progressed emotionally beyond middle school or high school. We had him tested and got an IEP written during spring semester. He starts high school next week. So far, everything looks encouraging. School staff have all been friendly, helpful, and understanding. They've been supportive of our making the best choices for GL, whether we chose to enroll him or not. They've had only good things to say about his accomplishments while home schooled. They listened when we told them about our observations and experience. They put everything in his IEP that we asked for. He visited his class a few times last year, and both Sp.Ed. and regular students recognized him and greeted him in the hallway.

But the most important thing we've learned from other autism parents' stories is: Don't. Trust. Anyone. Or prehaps, Trust, but verify.

Update

Mama Bear found a new job, which she started this week. It's full-time, with benefits, but pays 20% less than her old job, so we are considering where to go from here.

We all have some kind of sinus / allergy thing, with headache, runny nose, irritated eyes, and sore throat. Even GL got it this time. BB ran a fever briefly, but so far, no one else has. We're all taking cold medicine at night, otherwise we keep waking up because we can't breathe. If we take it during the day, we get sleepy, but without it, the pain makes it hard to focus.  Pray this passes quickly.

Waiting for the Call

30 out of 170 employees at Mama Bear's work will be losing their jobs today.  We're waiting for the call. If it doesn't come today, she will still have a job, but of those that remain, 9 more will be re-assigned, most likely with a pay cut, and possibly made part-time, and so lose their benefits.

As long-time readers know, when my hours were cut, she took a part-time job to make ends meet. My job eventually disappeared entirely, while hers grew to full-time. I haven't been employed in the last three years. I have been GL's full-time caregiver since then, and home schooled both boys.

We'd appreciate any prayers, best wishes, or good thoughts sent out for us.

It's a Beautiful Day in the Neighborhood!

GL's IEP meeting was Tuesday. There are 13 people on his IEP team, (not counting us) and they were all there except the school OT, who was out having a baby. She called ahead to say she would send her report with the PT, which she did. After each team member went over her report, and gave us the chance to ask questions or make suggestions, we went through the draft version of his IEP. Everything we asked for was in it, and several things we thought of and discussed during the meeting were noted for inclusion in the final IEP.

One thing we insisted on was starting him with one class period per day (this school's class periods are 90 minutes) and working up to a full day. He has been allowed to visit and participate for one class period at a time (twice, so far, with more planned before the end of the school year) and both times, he did well, he enjoyed it, the staff said he was wonderful, but it took so much out of him, he came straight home and slept the rest of the day.

One woman (there were so many people in the room, I had a hard time keeping straight who was who) kept pointing out problems with everyone's ideas. I was beginning to  wonder if she were the school attorney. Then I realized she was the district director of special education. She did bring up some valid concerns, like how are we going to accomplish everything in GL's IEP in 90 minutes a day? She also suggested some workable solutions to these problems, so she wasn't just shooting down everyone's ideas. I think his IEP will be more workable now that we have some of these wrinkles ironed out. His IEP looks very good on paper. I know these things don't always work out as well in practice as they do on paper, but I'm glad we got so many good things written into it.

The meeting lasted three hours. GL offered suggestions when he could, and otherwise sat quietly, listening and doodling on a sheet of paper. He lasted two hours before he needed a break. We all took a five minute break, then a support teacher took him for a walk while we finished the meeting. We were all exhausted when it was done. We went out for lunch. (GL requested Chinese, because he wanted "cranberry goons".) Then we went home and he slept the rest of the day.

BB has been planning to mow lawns this summer to earn money for his CAP activities. (And those incidental expenses, like meals out.) We bought him a lawn mower for his birthday. A rather expensive present, but if it works out, it should save us money in the long run. I assembled the lawnmower Tuesday afternoon, (more complicated, time-consuming and frustrating than it sounds) gave him a quick tutorial, and he practiced mowing our lawn under close supervision. He'd never mowed before. He did pretty well for his first time, but I thought he needed a little more practice before hiring himself out to strangers, so he's mowing for PBP tomorrow.

Wednesday was therapy, and GL's OT commented that he seemed unusually tired. He has a med to be given PRN for anxiety and aggression, but we try not to give it on Wednesdays, because it makes him  tired, decreases his muscle strength, and leads to intention tremors, so his OT can't get any productive work out of him. She wondered if we'd given it. We hadn't. He was still that tired from the day before. She also mentioned that once he starts getting OT from the school, his insurance may stop paying for private therapy.

We've been looking for an outside peer activity with weekly meetings to get him used to interacting with his peers, and hopefully build some social stamina for school. Even when everything is going well, the social aspects of the classroom are harder for him than the academic subjects, assuming those are at a level he can understand. If he'd been in a school classroom up until now, I doubt he would have learned anything. Why enroll him now? Well, he continues to progress, however slowly, in reading and writing, but in other subjects, he appears to have learned all he is capable of learning. If the school can teach him some math, great, but I'm not holding my breath. For him, home was the best environment for academics, and those take priority. Now that those are mostly done, and we feel he is more able to handle the "hidden curriculum" that most students pick up unconsciously, but he has to be explicitly taught, we'll let the school work on socialization, vocational skills, ADLs, recreation, community involvement, safety, and hundreds of others. Not that we have ignored these, but we felt home and the neighborhood, i.e., the real world, were the best place to begin teaching them. Yes, there are a portions of each skill the school can teach best, and now they'll have the chance, but looking back, it's remarkable how small those portions are, and how unimportant they were to his earlier development. Now that he's come so far, they are among the remaining hurdles between now and his post-high school life.

Back to an outside peer activity: there is a Scout troop for people with disabilities forming, and we thought it might fill the need. We attended a meeting tonight. There were five other youth there with their parents. Four of them were far below GL's functional level. The fifth was somewhat above his level, and trying to be the center of attention by being the expert on everything. GL spent most of the meeting acting about half his functional age.

They were working on their first merit badge: Nutrition. The teacher gave a lecture on portion sizes, then passed out crayons and worksheets and pictures of food to color. Then she went around and helped the students color their pictures and do their worksheets. No one but Mr. Expert-on-Everything (who colors perfectly within the lines) was much interested in the lecture or worksheets or coloring. GL did a little paperwork, then got bored and spent the rest of the meeting talking baby talk, intentionally giving wrong answers, and spinning in his swivel chair like it was Disney's latest attraction. He said he had fun, but when I asked him what he enjoyed, he said, "The chair." I did not drive an hour each way so he could spin in a swivel chair. There are plenty of office supply stores closer to home. And the socialization was definitely having a negative effect. Maybe we'll find another activity closer to home that's a better fit. Or maybe we'll just wait for Little League season to start.

Friday night the high school is putting on a program, and the special ed students have a part. We bought tickets. Saturday is a transition seminar. Sunday morning is church, and Sunday afternoon is a community youth theater production of Robin Hood. Several youth from our church are in it, and we are planning to attend. I've thought several times that I must have lost my mind to schedule so many events in one week, but for most of them I didn't have a choice of "when". They were already scheduled, and I had to choose "yes" or "no". I wish I had said "no" to a few more things but, other than Scouts, I'm not sure which ones.

IEP Meeting

I haven't blogged much lately, not for a lack of things to blog about, but for a lack of time. Among other things, we've been preparing to enroll GL in high school in September. This is not only a transition from middle school to high school, but also from home school, which we've done from the beginning, to public school. You know how difficult transitions can be for kids on the spectrum, and how hard it can be to figure out what services they need and how to get them. So far, everyone seems to be going out of their way to help him (and us) so I am cautiously optimistic. But I know that not everything needed or recommended always ends up in a student's IEP, and have heard plenty of stories about schools writing great IEPs and then ignoring them.

His IEP meeting is Tuesday. We'd appreciate any prayers, best wishes, and good thoughts you can send our way.

Recognizing Autism

Unlike most children with autism, GL did not develop symptoms before age three. He didn't have terrible twos. He was happy and precocious. Nothing bothered him. But shortly after his third birthday, something new began. He would occasionally, and for no apparent reason, turn into:

None of the usual methods of dealing with tantrums had the least effect. (They worked fine for BB.) At first, we could usually distract him, calm him, and then deal with whatever had set him off. But he became harder and harder to distract, his rages seemed to come out of nowhere, and it got harder and harder to discern what, if anything had set him off. In between times, he was his usual lovable self, but as these rages became more frequent, intense, and lengthy (45 minutes to an hour was not uncommon) it seemed like there was a tiger loose, and GL came out to play less and less often. When we finally got a diagnosis (shortly after his 7th birthday) we were able to get medication to help control these outbursts. It was like putting the tiger back in the cage, so GL could come out to play more often.

Since then, that's been a pretty good measure of how well his meds are working: Tiger time vs. GL time. The quality of the event hasn't changed; he's just gotten bigger, stronger, and more coordinated. He's five feet tall and 120 lbs. He pounds on walls, doors, and people. (We try to keep him away from windows.) We just came through a couple weeks of GL melting down twice a day, and even with medication these meltdowns were lasting over an hour. We got his meds adjusted this week, and things seem to be smoothing out. We'll see.

Prayer Request

A friend and her children were in an accident. The baby is still in the hospital. Updates here.