Wendy Portillo, Again?

Apparently, in Port St. Lucie, having a class vote an autistic child out of his kindergarten class is not an offense that bears permanent removal from the school system. That's the message that will be sent if Wendy Portillo, the teacher who committed this grievous act, is not only rehired, but given back her tenured position. Are they kidding? If he were my son, I would have wanted the woman's head on a platter, forget her job.

Kristina Chew blogs about this at Change.org, and I'd urge you to sign the petition to keep this woman from poisoning any more young minds. People with disabilities deserve the same rights as anyone else, and we can't have teachers misguiding our youth to the contrary.



P.S. I didn't forget about Thursday Thankfulness - just a little delayed. Will try to get it posted over the weekend!

*Old newspaper image by Hugo Gernsback

Teaching Safe Cycling to the Wandering Aspie

We went for a bike ride with the kids Saturday morning, and I gave some thought to the process we use when riding with him to keep him from accidentally harming himself or anyone else. Gus has the balance to ride a two-wheeler, but at this point, he's still a dangerous cyclist. Because he has such a hard time focusing, he is very unaware of anyone or anything around him. He tends to zigzag and weave along the path. It's actually frustrating for me to ride near him because he so often will swerve right in front of me, and if I'm not careful, I'll either plow into him or fall over or both. Obviously, we can't ride along a road or anything like that with him. Here are some of the strategies we use.

Choose places and times to ride that are the least congested

We've found a trail nearby that will give the kids a 3.5 mile ride, but sometimes (like Mother's Day in the afternoon) it can get a little busy. We went there yesterday at about 8:30 in the morning. That way, although there were still a few people, Gus had lots of space. He still had a close call with an older gentleman on a unicycle, but it was a mostly uneventful ride.

Ride alongside him so he develops the ability to ride in a straight line

Usually when I ride with Gus, I ride on his left and match his pace (usually frustrating and more on this later). My less stellar parenting skills tend to come out at those times, but it does make a difference, and I notice that he tends to stay straighter than when he's left on his own. The problem with this strategy is that we're not riding single file and I end up in people's way. There's also the tendency he has of suddenly getting too close and nearly knocking me over so I don't fall on him. But he improves each time we go out, so I'm trying to be patient about that.

Use a lower gear

I don't know why I never thought of this before. One of the things that was difficult for me riding with either of my kids is that they ride so much slower. I typically ride in a middle gear, but then it always felt like I was crawling. I've seen my husband get off his bike and walk because Gus was in meandering mode. But yesterday I got the idea to just use a lower gear. This allowed me to pedal and my usually rhythm without getting very far so I could pace the kids. It felt like a more enjoyable ride because of that.

Try a trailer or tow bar

I've been considering this option for quite a while, but the thing that stops me from getting a trailer like these (which I'm still considering – just have to figure out if they would work for us and for how long):

I am very seriously considering one of these tag-alongs, particularly the tow bar, which attached a regular child's bike to an adult bike. We'd still have some flexibility with that one, and Gus could ride until he was tired or until we got to an area that was unsafe for him (like crossing a road) and then get a tow. I'd also be able to do some longer rides with MM because she could go on Gus's bigger bike without having to worry about the size too much. Or maybe I'd just get two tow bars (as soon as I hit Lotto - I'll start playing right away). A friend of ours was considering getting the WeeRide style trailer for his daughter who has Arthrogryposis. She needs to exercise and strengthen her leg muscles, but tires easily. This would be a way for him to take her riding for some father-daughter bonding. Being able to handle longer distances with her family would give her self-esteem a boost as well. Lots of uses for these handy gadgets.

So I've offered a few tips for a safer ride with your special needs child. If you ride with your child, how do you teach them to follow safety rules?

Happy Memorial Day if you're in the US, and Happy Monday no matter where you are!



Disclosure: This post contains affiliate links.

Hot Soccer

Yesterday I got to take Gus to his soccer game! It was awesome, in large part because we had an almost 90 degree day yesterday, so in the morning, the temperature was perfect for hanging out watching a game. I saw some of his teammates from the fall season and a couple of additions. And apparently there is now a special needs cheering squad! Way to go girls! They were too cute!

Gus had to take several water breaks, but he did very well during his field time. They did a drill that involved zig-zagging through some cones and then dribbling in the same pattern. I'm not sure I could have done it without hitting any. But he did it and later made 3 goals.

Gus taking a little break on the field.

In the afternoon, we thought we'd go for a hike up the Appalachian trail and then maybe spend some time at the playground. First, 90+ degrees is only good hiking weather during the actual summer (not this prank summer we're currently experiencing) after the trees have bloomed completely. We figured the trail is normally nice and shady. We're normally on the trail in July, not April. So the hike was quite short. We lasted longer at the nearby playground because the kids found some nice shady spots to hang out in. What did they care that we had to share a 2 foot by 8 inch patch of shade between the two of us?

Don't get me wrong, I'm not complaining about the heat. If it decided to stay this warm through the end of the summer, I'd be a happy woman! Gus on the other hand...heat and the resulting eczema are not really his friends. He was up in the middle of the night, which I suspect was also related to the heat, but he insists he was doing research on Pokemon steel types. Makes perfect sense to do that kind of research at night - they might have melted in the intense daytime heat, right?

It was a lovely, laid back Saturday, and if I can get my act together, tomorrow I'll post about how we managed to beat the intense warm weather for Manic Monday!

Where Does Quirkiness End and the Spectrum Begin?

Last summer I read a book called Kids, Parents and Power Struggles by Mary Sheedy Kurcinka. While I don't typically read a lot of parenting books, this one stuck with me. Kurcinka talks a bit about temperament and personality types, and what I found most interesting was that some of the extreme manifestations of different types of behavior came very close to mild manifestations of behavior that you might see in a child on the minor end of the autism spectrum. For example, some traits that she discusses in her book are persistence, sensitivity and activity. There's a scale to measure if your child exhibits these traits at a high level or a low level. I remember reading and thinking that there seemed to be a pretty thin line between a highly persistent child and one on the spectrum who might be mildly obsessive. From her description of the sensitivity trait, I wondered where the separation was between a highly sensitive child and a child with mild Sensory Integration Disorder. It occurs to me that these distinctions are purely subjective. I have to wonder if this subjectivity, coupled with a culture that strikes me as obsessed with conformity and sameness, might be a factor in what often appears to be a sudden rise in autism diagnoses.

Years ago when I was in elementary school, I got straight A's, but I rarely paid attention, I often daydreamed, I sometimes got out of my seat for no good reason (one spring I used to sit on top of my desk trying to sun-bleach my hair), and I was often disruptive but not overly active. If I were the same student today, I might be diagnosed with ADD, but back then no one felt the need to classify me as anything. I was just a really smart kid who was probably bored and talked a lot. When Gus was about 18 months old, I noticed that he always seemed to isolate himself from the other kids in his daycare class, but being that I had a deep appreciation for solitude and little experience with 'typical' behavior for a child his age, I wasn't inclined to think of his behavior as problematic. My bigger issue was with his teachers who never seemed to be aware that he was at the opposite end of the play yard all alone.

The more I learn about the autism spectrum, the more similarities I notice between my son and myself, the more I question the validity of some of the things that have been labeled as 'dysfunctional.' I rock side-to-side; if Gus did that he'd be stimming. My friend had a lot to say and a doctor asked her if she had ADHD. Why couldn't it just be a simple case of her having a lot to get off her chest? When did every little difference become such a big issue?

I'm not suggesting that individuals on the autism spectrum don't need extra support because often they do. What they don't need is the stigma of being damaged in some way because of their differences. Maybe instead of trying to force these individuals to perform in a way that is unnatural for them, perhaps the world needs to do a little adapting to the fact that we are not all carbon copies of each other, nor should we be.

Busy Weekend

image by: Ian Britton via Freefoto.com

I've been MIA for a few days because the weekend was just incredibly busy. I was very excited that Gus had an exceptional time in terms of his behavior.

Saturday, the kids spent the day with DH and with their grandfather while Grandmother and I were at a bridal shower. Thankfully it was a magnificent day, so they got to go to the park for a good 3 hours. It always amazes me how much good the outdoors can do for Gus. If only it was nice out all the time and he could have all his classes outdoors. He didn't wander off at all, but all reports, which is huge for him. When everyone came back in, he was much more mellow than he had been on his last visit. He slept almost the whole way home but still slept through the night. Sunday morning, he was still in his calm space.

Sunday afternoon, we went to his little cousin's birthday party. There were a lot more children than I anticipated, and he tried to leave a few times, but all in all, he handled the party well. He held it together when they sang happy birthday (just had his hands over his ears and looked like he wanted to bolt, but didn't). And there was one very surprising and nice aspect of the day. The birthday boy's older brother is also on the spectrum, so he and Gus generally sort of orbit around each other without interacting much. Well yesterday, they actually 'hung out' for a while - Gus watching his cousin play a video game. There were words exchanged! They stayed up there together until Gus wanted a turn to play. His cousin got mad when he was made to share and that was the end of the bonding. But it's a start!

Gus woke up a couple of times last night, but he was still pretty chilled out this morning, so hopefully it was a good day at school as well.

How did your early-spring weekend go?

Something He Might be Good At

image by Peter de Wit - some rights reserved

The kids were invited to a birthday party today - a bowling party. We figured they'd have fun, but they truly exceeded all expectations.

Gus and MM ended up on a lane with 4 other kids. One little boy is a natural athlete: he plays baseball and almost has his black belt in karate - the kid is not even 8 yet. He doesn't typically play with Gus, and often makes derisive faces at him. Even when they first started playing, Gus was hopping up and down, so excited every time he knocked down some pins. HE was equally excited and cheering for anyone else who knocked down some pins. That earned him a couple of "weird" looks from the other boys playing.

That was until he pulled into the lead.

Yes, you read that right. Gus, the boy with poor coordination and low muscle tone, especially in his arms and hands, was beating Super Athlete for a frame or two! Go Gus! After that, Super Athlete wasn't exactly nice to him, but I could see a little glimmer of respect replace the condescension.

Gus came in 2nd place with a score of 78 - not bad for a kid who has only bowled one other time. And MM, bless her heart, came in a close third. She has patented a move she calls the "run slide." Picture bowling meets Flashdance. A couple more games, and my kids will be able to take on the president.

It was a fun party and an exhausting afternoon. Catch ya tomorrow!

The Annual Review: Related Service Providers

image from Wikimedia Commons

I'm not sure if this applies to everyone, but in our district* (in New York State), if you want your child's related service providers (i.e. speech, occupational or physical therapists) present at his or her annual review, you have to inform the district and request that they be invited. I was unaware of this for our first annual review and was shocked when Gus's old speech teacher was recommending to end services (because she didn't think the district would approve them) but wasn't coming to the meeting to justify her recommendation. Fortunately, the meeting was taking place in the school building, so I was able to talk to the teacher quickly and figure out what was going on. Had we been in another location (like a district office) Gus probably would have lost his speech services.

I make it a point to keep the lines of communication open with anyone who interacts with Gus on a regular basis without breathing down their necks. Now I try to schedule a team meeting sometime prior to the annual review so that I don't get smacked with any surprises and so that everyone is on the same page going in. Hearing about a recommendation for a program change in the meeting doesn't allow you time to think and process the information, which can lead to a rushed and possibly bad decision. In my humble opinion, I think some administrators count on that element of surprise so that the parent will just go along with their plans. This is not to say that all CSE chairpeople are evil and want to harm the poor little special needs children; I'm not saying that at all. But realistically, everyone has their own agenda when they walk into that meeting, and you are probably the only one whose sole concern is your child.

To most administrators (and I say most because I have seen a few who have taken the time to at least put a face to the name on the reports) your child is a name and number on a piece of paper. This is one reason why having those service providers present can be so important. They are the ones who work with and know your child (at least in theory, but if they are clearly not in that category, simply don't invite them to the party). If you think that they will help you advocate for your child, make sure they will be present. Once you get the date for your review, contact your district chairperson and express your wishes for who will be in attendance. If you call, make sure you follow up with an email or letter.

That last bit is important. I just called our district and was told that I didn't need a letter. In the past I've been told something very different. I'll compromise and send an email. That way, no one can say I didn't follow the protocol.

Does your district have different rules for annual reviews? Are your child's service providers automatically included? It would be great to see how other states handle the process.

*edited in 3/18/2009

IEP Time Again

Our annual review is fast approaching, and as usual around this time of year, I'm getting anxious - probably more so than in the past. The difference this year is that there are massive budget cuts being rumored throughout our district. From all the buzz, it doesn't seem like it will affect the special education budget that much, but I can't see how it won't. The CSE has been pushing a program for Gus that while not awful, isn't as good for him as his current program. He'd almost (99%) certainly regress and would be set back a year. Aside from that, we'd probably see an increase in his wandering and "eloping" behaviors: too large a class (I've already been told that they will be over their limit), too large a school, and not enough sensory support for him to be able to cope. So I'm anticipating a battle and not looking forward to it.

I talked to a friend whose son is also being recommended for this program, and it never ceases to amaze me how nasty these CSE chairpeople can be. And they often seem to work under the assumption that parents aren't doing their homework and that we won't see through the nonsense they shovel at us. They love to make parents feel like they have no choice but to accept what the district sees fit, and they love to throw around the term "Least Restrictive Environment (LRE)." As a matter of principle, I agree that a child should be in the least restrictive environment, but remember that the environment has to also be appropriate, and yes, as a parent, you do have the right to reject what the district feels is appropriate if you disagree.

I can't stress enough how important it is to know the IDEA rules and your state's special education procedures better than you know the back of your hand. Our state sends these in a packet when we are given the date of our annual review, and you should have free and easy access to the information in your hometown. Read it. Know your rights. Don't let yourself get bullied.

And someone please remind me of all these things before next week. Have a great day!