Welcome to the wonderful world of specialists!

So we got a call from Henry Ford's Center for Autism and Developmental Disabilities. They got the paperwork! (Well, that was actually a separate call earlier this week, letting me know they got it and didn't forget about us…) And they were happy to let me know that they were wanting to set Billy up for the next available appointment date.

I of course asked when that was.

"October 16th! We have an opening at 9am and noon!"

"… what? That's your earliest date?"

"Yes. We can add him to the cancellation list too, something might come up earlier, it happens from time to time"

"ok. Well, he'll be in school for a few months by then, so let's schedule it after class so it's less disruptive to his schedule. noon sounds great."

sigh.

Could be worse, a parent on MyAutismTeam commented on my post there saying U of M is scheduling appointments 2 YEARS OUT. TWO WHOLE YEARS. Good lord.

Anyway, we also ordered this today. Celluar based GPS tracker should be good for when we're camping this summer. Last summer we had a minor incident where he wandered 3 rows of tents down to play with someone else's dog. Back then he was essentially nonverbal so it was extra scary. Now, he'll have GPS tracking, be trained how to swim (which he gets better at every day, 18 weeks of formal 1:1 training and swimming 3 times a week will do that, I guess!), and be equipped with a PECS to help him communicate where words fail him.

We still plan on using the teddy bear beacon/tracker for times when we expect him to try to wander off (like at Eastern Market, or at the fireworks, both of which he loves, but also loves to try to seek his own path, which obviously is unacceptable!), but the GPS will give us peace of mind if he disappears at times we don't expect him to. The GPS duty cycle and battery is supposedly good for 3 days. If we're good about keeping it plugged in at night, this should be perfect for essentially 24/7 monitoring. Not sure where we'll attach it yet, I may have to make it a waterproof shoe case. I wish I could just strap it to his ankle like a criminal's tether, but i can see him trying to focus every bit of energy on getting that off him posthaste, damaging it if necessary. (if he's one thing, it's clever and determined!).

Progress updates – swimming/iep/fbi

Swimming:

Today, I saw Billy swim roughly 10 feet while treading water and keeping his head dry. I'm super excited about that.

Last week he was playing around near the edge of the pool at the YMCA and fell in. He swam back to safety and pulled himself out of the water. I'm also super excited about that.

IEP:

Survived it. It wasn't earth shattering. I made a reasonable size deal of pushing for a outreach to the local first responders to have a meet and greet where the students can practice their social scripts, and the law enforcement/EMS/Fire can learn how to deal with various special needs first hand. They were all very interested in this idea. Let's see if that dog hunts.

Got the autism paperwork submitted to Henry Ford, let's see what happens there.

FBI:

Got a batch of intact computers back from the FBI. Excitedly awaiting the rest.

Advocacy:

Just wanted to call attention to this page as well: stophurtingkids.com

My school used physical restraint in situations where there was no risk of harm, and often secluded me well into middle elementary. I spent entire afternoons in hallways or locked/unlocked rooms off the library in school, without adult supervision, because the adults lacked proper training on how to deal with children who had disabilities that caused them to be disruptive, or to 'not fit in in the classroom environment'. As my mom said "if we hadn't fought for your rights and for inclusion, you'd have spent most of your educational career hiding curled up under the principal's desk, locked in a hallway somewhere, or god knows what".

It's always in the back of my mind when dealing with schools. I mean, having giant custodians manhandle you and do prone takedowns to keep you in your hallway seat has an effect on a 1st-2nd grader. I have recollections of them experimenting with mechanical restraints too, but I'm pretty sure that didn't last long.

Anyway, these practices need to end in the United States. Children are being seriously injured or killed from improper restraints, or improper supervision. And it has no educational or therapeutic benefit.

Swimming update

We're now in week.. 8? or 9? of swimming instruction. Things are going pretty well. The instruction is officially 6 weeks long, but I don't think anyone truly expected  to go from zero to swimming like a fish in 6 weeks, at least, not from Billy. I'm just glad he's mostly okay with getting his face wet at this point.

Since we started, our weeks go like this:

Tuesday – The three of us go to Family Swim

Wednesday – Billy goes for his 1:1 swimming instruction

Thursday – The three of us go to Family Swim

So for 3 days a week, he spends at least an hour a day in the pool. It's doing wonders for his comfort level in the pool, and it's not hurting us exercise wise as grownups either.

Currently, he's able to:

  • Jump in the water from the side of the pool in a seated position with a swimming noodle, or these things they call swimming bubble belts. I've never been there during instruction, and I'm myopic enough where I can't see other swimmers in the pool, so rather than show a real picture, I'll just drop this google image search here.
  • Swim unaided for several feet, between two people or a noodle and the wall, for instance. He's got huge confidence issues with this, and it's being worked on.
  • Swim using arms and feet with a noodle or bubble
  • Place his mouth underwater and make bubbles
  • Use his noodle as a squirt gun by flooding it with water, then blowing on one end to make the water blow out the other.

And as parents, we've learned to:

  • Repeatedly tell him to swim with his mouth shut, as he tends to have this goofy permagrin that lets water in
  • Make sure when he tries to interact with others socially, that he's not actually being adorable and getting close so he can spit water at them and laugh his butt off
  • That if he does do this, and accidentally swallows the water and starts coughing, to immediately rush him to the side of the pool, and bodily throw him as far as we can away from the pool without injury, and tell him to run away from the pool. This way, when he inevitably gags (yes, we've tried stopping this, with really bad results, coughing causes this on land too), he throws up on the edge of the pool, rather than inside of it. The staff isn't thrilled about this, which occurs roughly once a week, but is happy we've been able to detect it happening and react, unlike the first week where they had to close down the pool because a few hot dogs were basically floating in it.

Using my new "Force" like superpowers of anticipating vomit is a personal accomplishment of mine as of late. The lifeguards are starting to take note when they see me running in the pool with him in my arms, and "tossing" him onto dry land. I hear the mumbles, and I can tell despite the fact I can't see them that they are making disgusted looks, but usually one of the more experienced lifeguards (or Billy's instructor, who is aware of his special needs, is also a lifeguard there) will whisper to them or shoot a look, and collectively they don't make us feel as awkward as we could. That's as close to acceptance as I could ask for for the time being, so I'll take it. (The first couple of weeks, they told us that he can't come back in because he's 'sick', but I had a chat with one of them about his gagging issues, which he has on dry land quite a bit anyway, and now I get less static when I shower him off and bring him back in)

So all in all, we have progress, and I'm happy. We're not where we want to be with water safety yet, but we're a lot closer than we were, and by this rate we'll be where we need to be by summer vacation, which is comforting.

Craft Herpes

So today Becky was trying to make some sensory bottles (as featured on MamaOT's blog here). I attempted to provide assistance in my usual ways, contributing useful advice like 'the easiest way to remove the label is WD-40, don't waste your time with scrubbers and soap, that won't work, you need a solvent'. And then material assistance in spraying them down with WD-40 outdoors. (insert regrets for opening my fat mouth here).

So when we got home tonight, Becky showed me an attempt at an earlier bottle showing the glue and glitter (or as it's known around here, "craft herpes" as it is easily spread, and tends to leave a very obvious visible sign of infection, and is incurable/irremovable). It had clumped together in this horrid goopy ball. As I'm in "problem solver" mode, rather than simply share the feeling of failure and reassure her that "next time it'll go right", I leapt into action doing what anyone would do, trying to break up the clump. After shaking it like a madman, I opened the lid and jammed my finger into the bottle.

Now, if you're sane, you're thinking "WHY IN GOD'S NAME DID YOU JAM YOUR FINGER INTO A WATER BOTTLE FULL OF GLITTER AND GLUE?". And if you know me, the answer is of course "Because Paul".

And when my finger ended up glued inside the neck of the bottle, because well, glue, I did what any normal person would do under the circumstances – panic and try to get my finger out by any means necessary. Which, because Paul, ends up meaning "covering myself, and my laptop in sticky glitter".

Then when trying to figure out the mystery of why ours was less awesome than the OT's bottles, I asked Becky to hand me the glue to make my own attempt. It too clumped (though I did not yet put in glitter). That's when I saw the glue – "Craft Glue"… "Waterproof"…. Water and hydrophobic glue don't mix. And of course, because I poured it out into the sink, there was a huge glob of hardening glue stuck to the sink. I managed to get a majority of that cleaned up, at least, and thankfully it didn't go down the drain.

"F* you, man"

This weekend, I was at Eastern Market, I was approached while enjoying an orange with my son and uncle by a guy. This happens all the time in eastern market, there's always someone circulating a petition for one reason or another.

So anyway, this guy interrupts our orange related bliss to talk about linking liquor licenses to not having expired food on the shelves, if the liquor store also sells food.

I stated I thought liquor licenses were stupid anyway, and didn't like how complicated they already are, and how they shouldn't pass laws making them more complex, and frankly, I don't understand why we require a special license to sell alcohol at all.

He agreed (!) saying that he didn't like liquor licenses either. So I asked him why he was making an already generally absurd process even more complex, especially since selling expired food is already a health department violation, and this really adds nothing but complexity to a process I already didn't support.

He explains how it would just force people to carry fresh food. I asked how, since they already were in violation of the law and they did not care. And again, that I didn't like that a special permit is required to sell alcohol.

So he started getting agitated with me about it, and I broke it down for him:

"You want me to support making a license I think should be abolished specifically because the rules surrounding them are already onerous and often absurd MORE COMPLICATED, in order to stop people who are violating the law by creating an additional law that they'd be breaking.". Then I just stare at him.

He walks past me and screams "F*** you, man" in front of me and my kid. I yelled "stay classy" as he walked away.

Am I missing something, or was that guy just crazy?

Learning to swim

The last few months Billy has been really obsessed with swimming. Any time he sees water, some hotels, swimsuits, or anything related to swimming, he begs to go swimming.

Most people would be like "oh, that's awesome, kids love swimming! It's good exercise!" But most kids don't wander off under your nose to do whatever they want, consequences be damned either.

Accidental drowning accounted for 91% of all autism wandering related deaths the last few years. And Billy has to be physically restrained every second he's by a pool lately, because he thinks he can swim (he has had a few successful swimming events with a swim vest on) or because he wants to lay down on the edge (or crouch, yikes!) and splash his hands in the water.

With the warrmer weather coming, and his increased tendency to elope and his strong desire to be independent (he headbutted me in the face to try to walk unaided in a best buy parking lot a few weeks ago, and has been constantly trying to dart out into the parking lot before we can take his hand lately, screaming NO HAND NO HAND NO HAND! and crying his eyes out and refusing to walk if we take his hand (no way do I give into this nonsense, if he refuses to walk he gets dragged)). Not going to lie here, I was starting to get downright paranoid about the issue of him drowning.

I've taken a two prong approach to addressing wandering and drowning.

  1. Secure the perimeter: our house already has a security system we use in annunciator mode at all times, and leave set to "stay instant" all night. But we are not at our house much in the summer. I can't fortify my parent's house, a DNR cabin, a hotel room, or a tent. But I can buy one of these (which I will review when I get it) that allows me to prevent doors from being opened. That should take care of everything but the tent, and I have some ideas on that front.
  2. Address the risk: I do not have a pool, nor a friend with one. How should I teach my child to swim (especially when he doesn't listen to me half the time anyway?) Fortunately, the YMCA has the answer to that! The YMCA in Birmingham (the detroit suburb where I work, about 20 minutes from my house) has no less than 4 special needs swim instructors who are able to perform a 6 week, 1:1 swimming lesson to Billy that should address this. I also took the opportunity to sign the family up for access to the YMCA so we can help give him outlet for his swimming needs, and also accommodate Becky's longstanding request to join a gym with childcare. (Talk about a solid win!)

Anyway the swim instruction starts Wednesday so I'll update everyone as to his progress.

Interesting story during our tour, the lady signing us up was making small chat about things, and was aware of our special needs swimming class needs and the impetus, and asked if we had any questions at the end of our tour. I asked if there was any policy on whether we can practice swimming with Billy fully clothed in street clothes, including shoes. She was caught off guard by this, then suddenly you could see it click in her head why we would want to do this, and she got this look that seemed like a cross between understanding, sympathy, and horror. Apparently that can be worked out with the instructor, which is good. 🙂

If you would like to learn more about autism and wandering, please visit the National Autism Association's excellent site on wandering here

And on a lighter note, here he is crashed out on the couch:

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One of those nights (grossout warning)

So I had some issues that kept me later at work than I would have liked. I get home, and we have dinner. Billy hasn't been feeling well today, mostly coughing fits. No school for him tomorrow. Mommy needed to run an errand, but left her car lights on so her battery was dead. Went out to give her a jump, and she was on her way. I came back in, and Billy wanted a bit more food. He saw the guacamole from the chips and guac he slept through before dinner, so I made him a little plate, and retired to the restroom to attend to some personal needs.

I'm just about done in the restroom, and I hear coughing, some gagging, and a plate hit the floor. I jump up to see what's going on, to find that there's no toilet paper. I disregard that, and I see an upset billy sitting there in a chair, covered in his own vomit. He coughed, gagged, and puked in his plate. Upon seeing his own vomit, he freaked out, tossed his plate off his tray. He looked over the edge, saw his own vomit covered plate, and puked again over the edge of his chair all over the chair, the plate, and the floor. And then he laid back in his chair and closed his eyes to get some rest. (hey, puking a few times is hard work!)

So after procuring myself some toilet paper, I had to clean off a groggy, not feeling well boy, and his chair, the floor, and the table.

I could kiss the creator of Clorox wipes on the mouth. Even if they were a big ugly dude. Encouraging the people who make things like this is THAT important.

Autism screening paperwork

Now we've got the 16 page medical history form, and the 40 question social communication questionnaire out of the way, we only have the 12 page questionnaire, and the 100+ question child behavior checklist (actually visible at http://www.aseba.org/forms/preschoolcbcl.pdf ) to fill out before we can schedule the autism screening at Henry Ford's Autism center.

I don't know who they're testing at this point – him or us. I swear some of them are just to make us feel forgetful or senile. "At what age did your child first walk?". The questions are always thought provoking and remind us the ways he's different from other kids, as many of them besides the speech delay are subtle. But they're interesting nonetheless.

"If you come into a room and start talking to him without calling his name, does he usually look up and pay attention to you?" "no"

"Does he ever use odd phrases or say the same thing over and over in almost exactly the same way (either phrases that he hears other people use, or ones that he makes up)?" "yes"

"Does he ever have complicated movements of his whole body, such as spinning or repeatedly bouncing up and down" "yes" (they don't have a "basically constantly" option)

The master plan to be debt free is coming into place…

Failure is not a single, cataclysmic event. You don't fail overnight. Instead, failure is a few errors in judgement, repeated every day.
— Jim Rohn

Sometimes it's harder to be honest with yourself, than it is to be with others.

Ever since 18, when I began living independently, I learned a lot about putting myself in financial peril the hard way. Between numerous (likely actionable) missteps by employers when compensating me in my earlier years, misuse of credit, failure to plan ahead for my savings, failure to pay my bills timely, failure to stay organized, failure to file taxes timely and keep proper accountings of things, and unexpected expenses, I've put myself in quite a perilous place.

I make more myself than the average income of my neighborhood. But a few months ago, I was so far behind on my bills I was struggling to keep the lights on, and was only weeks from foreclosure. I didn't want to talk about it. I still don't. You write hardship letters to banks, and you don't know what to say. It's not like I lost an arm in a machine shop and lost my income, I made a ton of poor choices, poor organizational planning, and didn't keep track of what bills I was paying and when they were due. I was often a month behind on all my bills. I had only $500 in savings. When unexpected expenses came up, no way I was going further in debt, but I always thought "I can pay this, I have money in the bank!" and then a week later, I was all "oh crap, I forgot to pay DTE. That's why my power just went out.".. yeah.

2 years ago I locked all my revolving credit cards except a small $300 limit one for emergencies in a firesafe. I haven't touched them since. I cut my debts in half by focusing my efforts on paying those down as aggressively as possible. But I wasn't keeping track of things well, and more than a few times got more aggressive than I should have, and put money toward debt retirement I should have put toward normal bills. Obviously this was an untenable plan. I sat down and realized if I didn't put some serious math toward things and figure out a plan, I'd lose everything I worked for, and worst – continue to work my ass off and have nothing to show for it. I'd get massive bonuses, and dump them into paying bills.

I realized between jacked up penalty interest rates as high as 30% on balances as high as $5,000, and late fees, that my previously affordable plans had become a massive mess of unpayable penalties. I was getting kicked when I was down from every possible direction, and was liable every month for more than I made, despite the plans being affordable only months before. When you fail to pay one card, all the other cards take notice. They crank your limits down, they jack up your interest, and when you pay late on them, WHAM, 15% revolving interest just became 30%. Your budget to pay this card off in 3 years? No longer makes the monthly minimum payment anymore, which by the way  now has a $35 late fee.

After putting my head around every bill I was past due on, every revolving credit line I have, and the rare few collections I had, I realized I need a comprehensive plan. And then my car insurance doubled. WTF.

Today I got the fedwire transfer from a massive 401k loan (at 4something% interest). My first impulse when I saw the amount in my bank, combined with my biweekly paycheck, was to run to tijuana and say screw it all. But of course,  my debt will be 100% paid off in 5 years, and I'll save thousands in interest. The money I'm saving will be going directly into savings to cover rainy day funds, and my goal is to build up 3-6 months of pay in buffer money, as the financial folks always recommend.

I know 401k loans can be risky, but I read the risk carefully, and fully understand what I'm doing. By doing this, I've saved literally $500 a month in late fees, excessive interest, and other costs. That will obviously help when it comes to savings. I'm going to leverage the situation to try to refinance my horrid sub-prime 8.25% mortgage (shouldn't be hard, they said I could before if I were caught up in payments (as of tomorrow, I will be current to 4/1/2013 – I am current on mortgage payments on day 1 of the month for the first time in 3 years!) it's not like my debts disappeared, they just all went into one place). I see the light at the end of the tunnel.

And esurance cut my insurance rates in half for the same coverage. So there's another $150 a month I can put toward savings. EXCELLENT.

And when I have a buffer, I can safely put all my bills on autopay, and never screw them up again.

Things are coming together nicely! For the first time in 3 years, I'm looking forward to opening quicken, my online banking, and I'm feeling better about answering numbers I don't recognize on my cell phone. My credit score dropped 200 points this year. It's at 550. I have a long ways to go, but I'll get there. I can do this.

The personal website of Paul Timmins – Telecommunications expert, father.