Category Archives: Special Needs

Discussions about special education, IEPs, etc

Home for the holidays

It's 8:32am, and I'm sitting in my chair winding down from my day. I know you're thinking – you're up at 8am and functional? What gives?

Of course, I'm still up from yesterday. I'm about to go to take a nap in a few minutes to try to adjust back to the ways of the followers of the daystar today, and hopefully get in my Christmas shopping. Starting at 7am today, I'm off on vacation until 9:30am on the 31st, and then I'm only there for a few hours, then I get the 1st off, then I'm back to work for a full day on the 2nd.

Billy's vacation starts today, and is a bit longer than that.

I'm a bit apprehensive about the lack of structure. For both of us. There's going to be some winds whipping us around a bit, some holiday events here and there we have to attend to, but for the most part, we've no structure in our days. This has the potential of being awesome, or getting us into trouble. Billy got pretty weird on Thanksgiving with the lack of structure. He was getting very confused and upset about why there was no school and no "apple box day", which is how he refers to our weekly fruit and vegetable delivery service (in part because I use an apple in his visual schedule to indicate it's coming today, and it's been a tradition since he was born that he interacts with the box upon arrival, and he's been snacking on it immediately since he could have solid food (in fact, his first solid food ever was a result of him sneak attacking a blood orange I was eating from the box – he bit it right out of my hand when I wasn't paying attention).

We'll have to play this by ear. I'm hoping I can find some way to give him a bit of structure. I just need to figure out how.

The likelihood of my child's ability to read is 99.9999818366832%

99.9999818366832%

My child yesterday was watching me play Draw Something, and when it was time to draw for another person, he pointed at my iPad and said "Dada, pick 'Cry'" and pointed at the first entry – "Cry".

Now, I've suspected for some time that he recognizes some words, as he'll spend significant time sitting looking at books, and he's remarkably adept at figuring things out. He asked to play "Words" (iTouchiLearn Words) on my iPad, and I forced him into the game that makes you identify the word that matches the picture (he ordinarily prefers to match up the scrambled letters with the silhouettes of the words). He for 3 rounds of 5 questions each, selected the correct answer last, choosing the other two words first. Except for the last one, he chose it second. What's the odds of my child selecting the right answer last, 14 times in a row? 00.0000181633168% (That's .33^14). It randomizes the order of answers, and he always takes a different guessing strategy that chooses the right word last.

Why last? He likes to hear all the answers. He does it in his tablet's "Buddy Bear" app too, that's supposed to teach cause and effect. "Buddy bear wants to wash his hands? What should he use?" and he'll click the pictures of drumsticks and crackers first, before choosing soap as the last option, despite obviously knowing exactly what he needs to wash his hands.

So odds are, that Billy can actually read many basic words just fine, no idea what his comprehension is, but I definitely wouldn't put up a sign saying "turn this knob to escape this room" any time soon hoping he can't understand it.

Santa!

The Knights of Columbus arranged for a Santa to visit school and take pictures with the ECSEP kids in a safe and friendly environment, with snacks and presents. It was pretty okay. Billy generally enjoyed himself.

Here's one of the pictures where he wasn't freaking out and acting stiff as a board trying to slide off Santa's lap.

90dB of freedom, kind of…

Mommy I'm here CL305
Mommy I'm here CL305

I've mentioned here a few times that Billy has a problem with wandering away from us and getting into trouble. We employ a number of solutions to help at home (hook and eye latches at 5 feet on the screen door on the front, multiple door locking mechanisms on the main door itself, and using our alarm's "Stay Instant" feature), and thus we feel relatively confident we won't have any incidents at home under normal conditions. But sometimes we have to leave the house for something other than school (who uses constant supervision and a door wedge at roughly 4-5 feet high to make the door difficult for children to open (adults have no trouble)) and as Billy gets older, carrying him everywhere isn't a useful strategy, or practical.

Now, I'll say this, and you're probably thinking that given 3 seconds with your back turned, the kid will be halfway to the nearest busy street crossing. No, that'd be easy, because it'd be predictable. Wandering isn't driven by just walking aimlessly – it's done with a purpose, and a goal. Normal kids would communicate that goal to parents, and you'd either at least be aware of what the plan is, and have a chance to join them, let them go, or stop them. Many times, Billy cannot (or does not see the need to) notify us of what he wants or what he is planning. Billy knows quite well what his plans are and what his goal is, he just doesn't share it with us before silently disappearing. You'll turn your back to do something and 9 times out of 10, he's still right where you left him, counting things, or playing in the rocks, or whatever it is he's doing at the time. It's that 10th time that he has found something more interesting, and has no reason to communicate it.

So in comes the Mommy I'm Here CL305. We have tested it this weekend, and it seems like it's useful enough to do what we want to do.

The basics are this:

Child wears a teddy bear with a radio transponder and a 90dB siren in it. It can receive signals from your parent remote from up to 150 feet.

You wear/carry/whatever a parent remote, which receives signals from the transponder, and warns you when the received signal level from the bear is weak – corresponding to roughly 20-40 feet of distance in open space. (this is affected by things like people in between you and the child, or metal furnishings (metal folding chairs, cars, grocery store racks, etc)

When this threshold is crossed (it seems like the bear pings at about once a second, and missing two pings seems to be the threshold) your parent remote will begin chirping loudly (the volume and sound is similar to an alarm clock).

At any time, the parent can press and hold a button on the remote to sound the child's alarm, which is roughly the sound of a smoke detector. It's very loud, and anyone seeing a child running making that sound is very likely to try to intervene, or at least won't forget which direction the child just ran in. When the parent releases the button, the sound stops immediately.

This product is much cheaper than many on the market (though many of the more expensive ones are GPS/cellular based, or are literally run by LoJack and based on the same RDF technology as the stolen car trackers. so there's a reason for the price discrepancy) and involves no subscription fee, and my personal favorite – does not require assistance from law enforcement to use. It does have the downside of having to have been set up and turned on when the kid wanders, but because you're notified when the kid gets about 20 feet away, if you do this step, you won't have to worry about GPS signals. You can't just have it on and then turn on your remote when you want to find the kid, as they pair when first turned on, so your remote has to be turned on with the child nearby in order to work.

It does what it says on the tin, and while there are circumstances where the parent alarm can sound at perfectly benign distances, they generally worked as advertised, and I'm glad to have another tool in our toolbox.

So here's some pictures of Billy's sensory tent, and just a goofy picture of him.

Billy's "Train"
His sensory tent contains a super soft Angry Birds pillow, a fleece Angry Birds blanket, an inexpensive rain stick, and the rug is a soft, fuzzy, large looped blanket from Target. Billy likes hiding out here and reading when things get to be too much for him.
Ppppppppppth
He insisted that I take his picture, so here it is.

The secret to surviving developmental delays

The secret to life that makes dealing with a child with developmental delays enjoyable is that you get those cute moments when they're growing up, but they're just spread out over more time. If you can set aside what kids their age are supposed to be doing for a moment, you can still enjoy those firsts as they come up.

The skills were harder to master, more anticipated, and sweeter when they finally arrive. And as they arrive, slowly and in spurts, you get time to celebrate every one of the skills. How many parents get to celebrate the first time their child cuts a 6 inch straight line in paper? Or the first time they mimic the drawing of a cross (as in crossing of horizontal and vertical lines, not a religious symbol). I'll remember each of these when they come up. Most people don't even know when those skills emerge, it's just something that their kid does, just like every other kid.

Like today, Billy first showed interest in cleaning himself in the tub. He rubbed himself with a bar of soap, and while he didn't do a great job, he at least was interested. And this time, he let me rinse his body too, which was a nice surprise, usually he insists on doing it himself (and no disrespect Billy, but i'd consider that skill "emerging" at best, and as you and I both know, that bath needed to come to an end at that point).

And lately, he's been able to start to articulate what he wants in very basic terms, and where he wants it, as long as it's also very basic. Like a few minutes ago, he came up to me and started saying something nonsensical about his tablet, but then stopped, had what seemed like a moment of clarity, and asked me for lotion, and pulled up his shirt and turned around in a circle and pointed at his belly, repeating "lotion". This means he wants me to cover his torso in lotion, front and back. When I was done, he made a sigh of relief, gave me a giant smile, and said "Thank you dada!" and ran off noisily to play in his sensory tent in his bedroom.

(Oh, that reminds me, I need to be making a post about that sensory tent soon)

Semi-regular Billy Update

First the bad:
We've had a strange month with Billy. Near the beginning of this month, he started to refuse to use the toilet, and no longer notified us of his need to have a changed diaper. Back to square one on progress for that.

We received Billy's quarterly IEP progress report, and his self care (toileting and diaper awareness) progress were left blank. We thought that was odd too.

This week, we put Billy in an overnight pull-up on Sunday night. He was dry when he got up, so we sent him to school in it. He got home, and he was soaking wet in his diaper. It was the same pull-up he was in when we sent him, and it was soaking wet. Hmm. Odd.

The next day, we changed his diaper, and I wrote "8am" in sharpie on the inside of it near the top of his butt. When we picked him up, he had made a BM in the diaper, but it was the same "8am" diaper.

I shot a pretty dismayed email to the school social worker asking if changes had been made regarding staffing, because we had been noticing some disturbing patterns regarding diapers. 3 hours later, there was a freaked out voicemail from Billy's teacher (at 6:30pm, no less) apologizing profusely, stating they "had a lot of projects going on" and were profusely sorry for the lack of attention on the topic. Seriously? *sigh*. Well, they're on the topic more now. I don't want them to be nervous around my kid, but he needs individual attention on this stuff, and making sure he's cared for is (supposed to be) job #1 there.

Part of me suspects there was some sort of incident at school (maybe Billy fell off the potty seat there, or got pinched) and was difficult regarding diapers and toilet training after that. As he doesn't really communicate anything of non-immediate consequence, we'll probably never know.

Parent teacher conferences are coming up. I don't know if I'll be able to join them or not (Becky will attend either way), but we'll see.

Now the good:

Tonight though, I'll be happy. For the first time in several weeks, he asked to go potty. He was already partially done with a BM in his diaper, but he sat on the toilet for the longest period he has so far (roughly 3-4 minutes) and farted a lot. I was pretty happy with seeing him return to the toilet.

On the upside of school, Billy has been more communicative lately. He's using more canned phrases to communicate certain things. It does help quite a bit, and honestly, the phrases are a relatively good choice of wording most of the time. Some of it is even kind of cute and humorous. And we're hearing a lot more individual words to describe items – colors, easy nouns, etc. I'm pretty pleased with that development, as it's making life a little easier around here.

And Billy's actually reaching out to catch balls now rather than standing there and letting them hit him. He's generally unsuccessful at catching them, as he lacks coordination – but we're getting somewhere. And if you're a halfway decent thrower, you can stage some successful catches for him so he gets excited and encouraged.

Overall I think this school thing has been a win.

A hamburger victory

We're all doing okay here in the Timmins household, though it seems we've been sharing some minor bugs going around.

Billy was out of school part of Wednesday and all of Thursday because he was sick (as the school said "Please come and pick him up, he's had diarrhea. We put the clothing he came in in a plastic bag and changed him into his spare change of clothes in his bag." so yeah, it was one of those days.)

Friday he went to school and had a good day. He developed a really awful sounding cough that night. He still had it on Sunday so we dropped by the Pediatric after hours clinic, (where the resident was kind of dismissive, and a little WTF all the way around. "Should we bring him to his special education preschool program tomorrow?" "Sure!" "Will you write a note saying it's not contagious then? They get pretty strict about that." "Uh, it is contagious. Do they have special needs kids there or something?" "Well, it's special education preschool like I said, so yes, by definition they have special needs students there." *sigh*)

Anyway, we left a steam humidifier in his room last night, which seems to have helped, as I haven't heard him cough since. He's had a bit of a diaper issue tonight, so we'll be keeping him home tomorrow too, but it'll be nice to get back into his routines.

Right now he's up (he's napped a lot all day) and just for the first time in a long time actually ate hamburger! In fact, he polished it off and asked for more. Usually he won't touch them, or will crumble it up into little pieces and push it away. He won't eat his special dairy and soy free potato salad mommy made, but we'll take the hamburger victory for today. YAY!

Autistic Child Area signs…

PECS card available at http://www.do2learn.com/picturecards/printcards/index.htm

So a week or so ago, we were going to see some friends, and happened across an "Autistic Child Area" sign. I was completely dumbfounded by this sign. As someone with Asperger's syndrome, I should probably at least know how to react to such a sign, right? And maybe I could tell others!

Heck no. I have no idea what you're supposed to do differently with these signs. In fact, my amusing (and okay, pretty horrible) first thought leads to the image on the left. My immediate first reaction was "Maybe I should velcro a 'don't run in front of cars' PECS card on my front bumper? I mean seriously, how am I supposed to react to a sign like this?"

So a person who has thought about this for just a second would say "obviously, you should watch for children running out into the street. You should know, your kid has a problem with wandering and you always have to keep an eye on him for exactly this reason!" – But my response to this would be simple – "But that's not what the sign says, it just indicates that someone with a pervasive development disorder lives on the street. It doesn't give any guidance to the driver as to what is going on, so as a parent I'd just be hoping that all the drivers are aware of the risk of elopement and lack of awareness of danger. Poo on that. That's ridiculous. And besides, I should be watching for that anyway, because neurotypical kids run carelessly into the street all the time. If I'm not watching for that, a sign warning of autism isn't going to help either."

I would much rather drivers be paying attention to the road than pondering the meaning of a vague road sign in my neighborhood, that's for certain. I think we have far too many signs out these days that provide little or no useful information that tend to distract drivers, or numb them to road signs, causing them to disregard information when it really is serious, because some signs don't matter.

And ahh yes, elopement, that's one of my favorite parts of parenthood at the moment. Billy tends to go where ever he wants, given his choice. Oh, a puppy across the street? I know we've practiced not crossing the sidewalk boundary a hundred times, but … but .. puppy! Turn your back for a second, and he's right out at the edge of the street! And while we were camping this summer, we ended up having to use a hot pink trail marking ribbon strung around our campground to keep him from wandering throughout the campground, no matter where we went. In St Ignace, I went into the back of my car to grab our tent, and in the 30 seconds I was otherwise occupied, he silently walked away, and was found two roads down (in the campground) at a campfire with several other campers, pointing at the fire and saying "fire, fire". It was completely terrifying because it had just become dusk, and I couldn't easily see him. And of course, he doesn't respond when his name is called. I was so relieved to find him safe that I didn't even care how awful I must have looked to the other campers, parent wise. After that, we went back to last year's old standby of attaching a glowstick to his back where he couldn't see it. He tended to respect the pink trail ribbon boundaries more often than not, and we briefed our nearby campers on the risks of him wandering, and asked them to try to distract him if he showed up, and also not to give him milk or soy products if he asks, as he's allergic. (Thankfully,all the fellow campers were very accepting of Billy)

On the upside, our PCP finally referred us to Beaumont's Center for Human Development for a proper medical diagnosis of Autism. YAY! Once they nail down the diagnosis, and define what treatments are medically necessary, it will be helpful to get any necessary therapy for Billy when school is out over the summer. It won't have any effect on our educational treatments, which are done based on federal and state special education guidelines, but will help us in private therapies when the school is out and they aren't providing them, as our therapists at the school can't provide referrals to private specialists under our HMO. So you're asking "you don't have a diagnosis yet?" – yes and no. We have every medical professional we've met saying "yeah, it seems like he does, he meets all the signs, but it's not my specialty". We have the school saying "He meets the federal criteria to receive his school based services, and the rest is none of our business." This is the final piece of the puzzle that helps us with getting insurance to cover more than just speech therapy (which they covered directly based on a referral from his pediatrician for speech delay). This will be with a developmental pediatrician, and will flip all the right bits in the insurance company and medical information systems to get us the right services in the private world. It will make discussions with medical professionals a lot easier, since with a label, you don't have to go and re-explain everything every time we deal with a new medical professional.

A new room, and for a moment, a sense of normalcy

So today, we gave Billy his big present from us. We've been quietly cleaning out a room we filled with junk when we first moved in here a few years ago. In its place, we've been arranging new toys, and organizational stuff. One wall has a 10 foot long by 2 foot high roll of whiteboard wallpaper on it, so we can draw pictures and words for him with dry erase markers. Currently it has some doodles and a crude visual schedule (I plan on printing out full size color cards, laminating them, and backing them with velcro, but for now this will have to do). We gave Billy a table, some Billy sized chairs, and an easel with chalk. There's also a place for his sensory bins we created, and a table to play with them at all his own, so that should make days when he returns from school easier for him (and us). There are still a couple extra boxes, and we're not finished cleaning out the closets, but it's a start, and he can start to enjoy his new space.

Needless to say, he was incredibly excited. He found one of his new toy bins was full of play food. Becky showed him how to make a hamburger, and hot dog, and how to put on fake ketchup. He of course started making us all wonderful hotdogs, hamburgers, and watermelon with all the ketchup one could possibly want, exactly as Becky showed him. It was the longest, most natural pretend play I've seen out of him yet, and I was completely overjoyed by it. Of course, all good things must end, and bathtime had to begin.

 

Billy has always been a little weird about baths. One week he'll love them and it's impossible to get him out, another week you should probably wear one of those protective suits they use to train police dogs.  It's rare that I can get his head wet to wash his hair, we often have to resort to using dry shampoo to keep it clean. But tonight was very special. He played in the water, and when he was done, he let me lather him up with soap. But when it came to rinsing him off, he would have none of it. ALL DONE ALL DONE *TEARS*. I now have a large, soapy, newly minted 3 year old sobbing unconsolably and trying desperately to climb out of the tub and into my lap. Even a gentle pour of water from a cup onto his back made him scream, and I couldn't calm him down enough to have him try to rinse himself off.

Mommy swooped in to help console him, and we got him to rinse himself off with the cup. He did an okay job, but he got a vast majority of the soap off, and he no longer looks like a grubby child. We had to put off the hair washing until tomorrow. Fortunately he tends to be weird about wanting to get his hands dirty, which makes his hair easier to clean than most, as he won't generally get his hair dirty.

Now he seems calm enough to actually go to bed, so I'm going to do that, and try to get to sleep myself in a little bit.