How-To

Practical Ideas for Protecting Autistic Children Before They Disappear

by Tim on April 16, 2010

The story of Nadia Bloom’s disappearance and rescue in Florida has made every parent with an autistic child experience something between nervousness and mortal fear. Any one of us knows our child could be in that story.

While our J-Man has not been what you’d call a ‘flight risk’ yet, that could easily change. Our biggest fear right now is that something will happen – like we’re in a car accident – and because he’s barely verbal, he will have no way to communicate with emergency personnel nor understand what they are telling him. Just about any parent with an autistic child has nightmares where our child is in danger and we are powerless to help them.

But what we can do right now is try to prepare as best we can to reduce the chances of harm coming to our children. We might not be able to predict every possible scenario, but we can act to greatly lower the chances of our children ending up in dangerous or life-threatening situations where we cannot help them. I’m sure we all feel a lot of anxiety even thinking about this, but as natural as that is, we can’t let our emotions get in the way of our children’s safety.

I don’t know the first thing about what Nadia’s family did with regard to preparing for possible emergency situations. So this is no commentary on them at all. The ideas below include those that came out of a session we had at school with a local police officer about safety and autistic children, other suggestions I’ve read about, or things we’ve tried ourselves.

[Standard disclaimery stuff - I'm not an expert in this at all. I'm compiling and relaying ideas that I've either learned from others or thought about myself, but whether they are appropriate for your family is up to you to decide. You have to set up a system that best fits your family and that offers you the most safety and security. When in doubt, ask your local autism support organizations, police department, emergency responders, teachers, and of course, other parents.]

Know the signs

Your best defense against something terrible happening is to notice patterns in your child’s behavior that may indicate that they are about to try to escape or otherwise take off in a way that could put them in serious danger, such as running off a sidewalk into a street.

This can be very difficult as often we aren’t sure what is going to bring this about in them or what to do to head it off. Try to keep notes about what’s going on each time your child tries to get away from you. Look for patterns. This is largely about data collection, pattern recognition, and using your parental instincts. If signs indicate that they may be getting to where they feel the need to escape, that’s when you act to preempt it as best you can.

Noticing any strong interests, especially ones that get more intense, may help in knowing when and where they may wander off to fulfill those interests.

No matter what, get a medical alert bracelet

Everyone who has experience with autistic children in potentially dangerous situations has told me the same thing – get a medical alert bracelet. We have put this off too long in our house because we thought he’d never wear it without an all-out battle. I know we’re not the only ones to have this excuse. I’ve talked to a few people in recent weeks who thought the same thing, got the bracelet anyway, and after some initial resistance, it’s now an accepted part of their daily life. The good ones are very sturdy and nearly impossible to take off if fitted correctly.

The officer who met with us at school said that if you do anything at all, get a medical alert bracelet first. She recommended having the child’s name, date of birth, phone number(s), and their diagnosis (or diagnoses) printed on the bracelet. She has an autistic son herself, and she said that while it’s very hard at first to get your child used to it, endure it and deal with it as best you can, but get it on them. It saves lives.

Bracelets are available at a multitude of places online in every material and style you can think of. Some also provide the service for an additional fee – like MedicAlert – of having a number an emergency responder can call to get your child’s medical information, etc. Make sure the place is reputable before you buy anything.

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Be Our Vest, Be Our Vest! We Love Our Weighted Vests!

by Tim on July 6, 2009

[Personal note: I know I haven't blogged in eons. The chaos of work, the J-Man going on break from school, the serious need to work on some of his behavioral issues, illnesses, and the overall bedlam of baby-parenting have been exhausting. Just wanted to let people know we haven't died or something!]

The adjustment to life as the Flashlight Four has been a challenging one to say the least. Our primary concern has been how all these changes would affect the J-Man as – not surprisingly – even small variations in routine can be difficult for him, and a new baby in the house is decidedly not a small variation in anything.

Things were going along more or less OK, but then we started noticing some significant changes in his behaviors at home. Nothing aggressive or in any way what you might call ‘negative’. It’s that he was so completely overloaded that he would run around screeching, stimming like crazy, spinning in wild circles, and pretty much literally bouncing off the walls. He couldn’t sit still for more than about two seconds for anything, not even for his favorite shows (which is a sure sign something is amiss).

When his teachers said they were noticing similar changes at school and that it was really affecting him there, we knew we needed to concentrate our full attention on finding something to help him get through this.

His OT at school suggested trying out a weighted vest at school and at home. If you’ve never heard of this, it’s worth getting some background information as we’re now total converts to weighted vests as a tool that may help sensory-overwhelmed kids. (BTW – To use one at school here, it has to be ‘prescribed’ and supervised by the OT as otherwise it’s considered a restraint, which is not permitted. Don’t ask; I don’t understand that rule either.)

I found an article (“Weighted Vests for Children with Sensory Issues”) and some additional information on commercial sites at eSpecial Needs and WeightedVest.com. (Note: I’m not endorsing their products as I know nothing about them, nor about anything advertised on these sites. We made our own vests – more below.) Research on the broader effectiveness of weighted vests hasn’t really been conducted to any real degree, so your mileage may vary for sure. All I can say is that our recent experience has made believers out of us.

We tried a weighted vest about a year ago, but the J-Man just walked around like a drunken sailor with it on. His gross motor skills were much less developed then, and the overall experiment was more or less an interesting failure. I think the added year of development and the resulting additional body weight made a big difference toward the success of our recent work. The OT last year did say that before age 3 is early to be trying this out and expecting to see much benefit. We’re very glad we tried it again now.

We borrowed the vest the OT had (I think her mom had made it) and used it both at school and at home for a couple of weeks. He’d wear it for about 20-30 minutes at a time about every two hours. We always tried to do some heavy proprioceptive sensory work while he was wearing it.

(For those still struggling with autism terminology – ‘proprioception’ is basically the sense most of us take for granted that helps us be aware of where our bodies are and what the various parts of ourselves are doing. Example: I’m aware that I’m currently sitting in this chair and that my butt is firmly in contact with the seat of this chair. Now imagine the chair slowly fading out of existence such that you are still in a seated position but you feel it less and less until you don’t feel it at all. Bet you’d seriously flinch and jump to your feet. Know that sensation of falling you sometimes get when you’re in bed and half asleep? Imagine that your kid feels that way all the time, which they very well might.)

At school, they often have him carry heavy objects around (e.g., old encyclopedias) or jump up and down on the mini-trampoline. He loves our little mini-trampoline at home (more accurately, in the kitchen), so he climbs on it and jumps forever. His current record is 13 straight minutes… And he much prefers it if you sing “Supercalifragilisticexpialidocious” and hold his hands while he’s doing it.

The change has been really quite remarkable. One of the teachers said something to the effect of, “We’ve got our old J-Man back!” He really has seemed so much more like himself.

Since commercial weighted vests can be very expensive, we decided to make our own. Or more accurately, we decided to sweet talk Mary’s mom into making them. :-) The basic construction of it is fairly straightforward, but neither of us know how to sew worth anything. Essentially, we (more the ‘royal we’ where we = Mary’s mom) got some heavy denim fabric and some thinner, more decorative fabric to go on top of that, made it into a long vest, and then rolled up the bottom and sewed in pockets to put weights in. Velcro along the back helps fasten it around his body.

Here are some pictures of the J-Man modeling. I thought the chili peppers were an inspired choice.

jman_nemo_vest.jpg

jman_chili_pepper_vest.jpg

For the weights, we took the 1/2-pound inserts out of some adjustable ankle weights (like these) and put one in each pocket. We think these are still too bulky – they make the waist really poof out and hard to velcro closed – but they are still less bulky than the other things we tried such as BBs, sand, pennies, and sinkers (fishing weights). Next things we’re thinking about trying are dense modeling clay and buckshot. (FYI – a digital kitchen scale is a huge help in figuring out the weights and getting them balanced all around the vest, something that’s very important.)

Between the weights and the heavy fabric, the whole thing weighs about 2 1/2 pounds. I’ve heard varying recommendations on how much weight to use, but the consensus of what I’ve been told seems somewhere between 5-10% of the child’s body weight. We’re kind of on the lower end of that right now.

I’d be interested to hear the experiences others have had with weighted vests. If any of this has made you want to try this out, talk to your occupational therapist. You shouldn’t start putting weighted anythings on your child without the supervision of a trained OT who can tell you whether this is appropriate for your child and their needs and what sorts of ‘heavy work’ would be most helpful to them.

As with most things, so much of our learning comes through trial and error, but we definitely feel we have trial and success here!

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Fun With Folder Games!

by Tim on January 14, 2009

Because 99% of the stuff in a toy store isn’t really made with the learning needs of autistic children in mind (not likely gonna see “For reading levels 6 and up and speech levels 1 and up!” on a toy) and because there’s no telling what the J-Man will play with and what he won’t, I’ve started making ‘folder games’.

These are just very cheap learning games made from manila folders, velcro dots, and other stuff that you can for the most part find around the house, or for almost no cost at the store. And when you’re done with them, you can just fold them up and slide them on a shelf.

The ones I’ve made lately center on matching words with objects (e.g. a square of one color, then he puts the word under it – or vice-versa) with some number and letter matching thrown in too. This seems like a big leap in mental effort for him, so his attention span is lower. But that’s just how he normally is with newer challenges, so it’s nothing unusual. He perseveres and soon amazes us with the things he can learn.

So I’d like to show you three examples of these folder games. I think the entire cost for these three activities took less than $2 out of the supply budget plus the time it took us to make them. And as a bonus, the folders themselves are reusable for countless other activities I haven’t finished yet.

Folder_Game_1.jpg

This is just a manila folder with eight velcro dots stuck in it – four for the color squares, which are made from construction paper – and four for the label strips, which I printed off my computer as sheets of about 20 words each and then cut them out. All of these things are laminated with matching velcro dots on the back so they’ll stick to the folder.

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The Big Cook: Adventures in the Kitchen

by Mary on April 22, 2008

This is a VERY LONG post about cooking. The only thing it has to do with autism is this: when your child is self-entertaining, it’s easier to cook while he’s around, because you don’t have to worry about him being all on top of you – because he can entertain himself (although there was a point Saturday night when I was in bed trying to figure out what the song running through my head was, and realized it was from the keyboard that played in the background all day).

Luckily, Tim realized it was ‘The Big Cook’ weekend, and planned his work accordingly so he could spend extra time with the J-Man. Oh, and that sometimes we run out of time to make a ‘fresh’ dinner because we’re running around with therapies and whatnot, and that’s when it’s great to be able to pull out something frozen and quickly reheat it. I love the microwave for that.

This past weekend, I did what we call ‘The Big Cook.’ It’s the reason we have two cabinets full of Gladware individual serving containers. Here’s how it works:

* The week before: sit down with a yellow note pad and come up with a list of foods you want to make. These should all be easily divisible into portion sizes and freeze and thaw well. Write down ingredients needed for each recipe, then add like together. For example, I ended up needing NINE POUNDS of ground beef total!

* Thursday night: make lists – we made the Costco list, the Super Target list, and the Harris Teeter list. We knew we could get meats and some larger sizes of canned goods at Costco, but didn’t want to buy a flat of 12 cans of diced tomatoes for example. That’s what the Super Target list was for. The Harris Teeter list was for the things we couldn’t get at the other two stores. HT is much more expensive, so I go there last.

* Friday immediately after work: load up into the car and go to Costco, list in hand. Buy most meats, that 105 oz can of crushed tomatoes, a new monitor for me, laundry and dishwasher detergents, and the best thing ever found at Costco: a red stapler.

* Friday night after putting J-man down: go to Super Target and get that list’s worth of stuff.

* Friday night after Super Target: Divide hamburger into portions needed for recipes, freezing the other 3 lbs in bags for later use, using your new digital kitchen scale. Rhapsodize about how much you like your new scale.

* Chop onions and garlic, and fry with 4 lbs of hamburger; drain. Add to giant stock pot, along with 105 oz can of crushed tomatoes, plus another 28 oz can, and lots of Italian spices (oregano, basil, parsley). Taste. Add more salt. Have Tim taste. Add a few cubes of frozen homemade pesto. Portion into many containers, label, and have Tim take out to the deep freeze in the garage, because the garage is also home to the giant cockroach, and seeing it skitter makes me shivery. WASH THE POTS.

* Saturday morning: instead of sleeping in, get up and start cooking again! Take one of the two chickens, and put into the giant stock pot. Cover with water. Put on the back burner, and let it boil for an hour or so.

  1. While that’s cooking, chop onions, garlic, and green peppers for sloppy joes, hotdog chili, chicken chili, and penne bake.
  2. Put onions, garlic, chicken broth, spices, hot sauce, and frozen chicken thighs into crock pot for chicken chili. Turn on and forget about it.
  3. Brown hamburger, onions, garlic, and green peppers for sloppy joes; transfer to other stock pot, and add tomato sauce ingredients to it.
  4. Brown hamburger, onions, and garlic for penne bake; drain. Put that into a container and into the fridge.
  5. Brown hamburger and onions for hotdog chili; drain. Make hotdog chili while sloppy joes mix is simmering.
  6. Remove chicken from stock pot, and refrigerate. Pour off chicken stock into big containers. Repeat process with the second chicken!
  7. SHOWER, you stinky person!
  8. Containerize (OK, seriously, Word thinks ‘containerize’ is an actual word,) both the sloppy joe mix, and the hotdog chili, and place in garage freezer. Clean out garage freezer so more can fit. Make SURE you label everything – we just use masking tape and a pen.
  9. Make the first batch of chicken and dumplings. This is a long and arduous process that I hate, but we love chicken and dumplings, so I make them, but only on The Big Cook weekends.
  10. Wash the pot, so you can use it for chicken chili: dump everything from the crock pot into it, shred the chicken, then add 4 assorted cans of beans, 2 cans of corn, and lots of cilantro. Stir and containerize.
  11. Eat PB&J for dinner. Never want to look at cooked food again.
  12. Put J-man down for the night – and have Tim separate the meats you bought at Costco into individual servings – freeze those as well.
  13. Make the other batch of chicken and dumplings. Force Tim to come downstairs and help with the dumplings. Containerize everything and make Tim take them out to the garage. Realize we are now out of individual-size containers. Put one giant container in the fridge. Cram pots into dishwasher and run it.
  14. Moan about feet hurting until Tim rubs them. Sleep like death.

* Sunday morning: up to make the 3 pans of penne bake. Reheat container of hamburger mix you refrigerated yesterday – add mushrooms you just chopped, and diced tomatoes and spices and let simmer.

  1. Fire up the giant stock pot to make 8 cups of penne. While that’s cooking, go ahead and chop the onions, celery, and green peppers for gumbo, and the onions and garlic for spinach/onion quiche.
  2. Freeze the gumbo veggies in freezer bags since you don’t have any more individual containers, so the gumbo will have to wait, but now you’ve done the hard part.
  3. Make cheese sauce for penne bake. Put 3 pans of penne bake in the oven.
  4. SHOWER, stinky!
  5. Containerize the penne bake in bigger containers, consoling yourself that you’ll probably have that for dinners, so won’t need the individual-size containers.
  6. Chop up the ‘meat for stew’ into smaller pieces, and freeze in bags for later. We throw a couple pounds into a crock pot with some soups, cook all day, and serve over rice. It doesn’t have to be cooked beforehand since it’s so easy.
  7. Make spinach/onion quiche and bake. Cool, slice, and freeze 2 slices each in freezer bags for quick lunches. (I was going to make a ‘quickie/quiche’ joke, but figured you had already thought of it.)
  8. Marvel at the state of the freezer. It’s FULL!
  9. Take a couple containers of food over to a friend’s house – three of the four of them (including both adults) are sick, or have wrist issues that preclude cooking.
  10. Make marinade for ham, and put it together with the ham in the fridge for overnight.

* Collapse on couch. Fold four loads of laundry done during the cooking ‘downtime.’

* Get J-man ready for bed.

* Soak feet. Even though you knew to wear shoes all day, your feet are still killing you.

Today I still need to bake the ham, and I truly would have made gumbo if we weren’t out of containers. I thought about going to buy some more, but just couldn’t do it. At least ham is easily freezable in freezer bags. I was also going to make 10 lbs worth of garlic/onion mashed potatoes, but again, no containers. I actually MAY go buy some, since potatoes will go bad. What? You didn’t think you could freeze potatoes? The only issue people have with that is the texture, and since in this case they are mashed, the texture isn’t affected.

That, my friend, is ‘The Big Cook.’ It will be a LONG TIME before I cook anything complicated again, and that’s the beauty of it.

Hints for your own big cook:

  • WEAR SHOES. Your feet will hurt less.
  • Clear the counters and make sure all the pots are clean the night before. You will need the room!
  • Double, even triple, recipes. (Or in the case of spaghetti sauce, quadruple) It doesn’t take much longer to chop two onions instead of one, and saves you from having to do a big cook that much longer.
  • Be able to multi-task.
  • Label everything. Trust me: hotdog chili looks like spaghetti sauce, which looks like chili with beans, and they all sort of look like veggie soup.
  • Use pockets of time where something is cooking to accomplish other things, like doing laundry, or chopping onions/garlic/green peppers for other recipes. Or, use a chopper/food processor. I didn’t use my mini chopper this time, because I knew I would only have room on the counters for a few things at a time, and anyway, I kind of like chopping,
  • Wash as you go.
  • Have someone available to rub your feet at the end of the day.

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