Locks and Latches, Part 1: The refrigerator

First, I should mention, for anyone following along, that my posts here will be sporadic. I might post several times in a week, or I might go a month without posting. Welcome to my unpredictable life.

One of the trickiest things about a child who is not verbal, but who is also not small any more, is that they can get into things. And get out of things. As they get bigger and smarter, the childproofing aisle of your local big box store becomes inadequate. Flimsy plastic tabs are great for toddlers, but can’t always hold up to big kids. And if you have a wanderer, it’s even more critical to find solutions.

I thought I’d cover a couple of things we’ve come up with in our house to keep our daughter out of trouble.

First, the fridge. Our little girl loves ketchup. Loves it. Also, barbecue sauce. And ranch dressing. Anyway, the way she expresses her love is to open the bottle and squeeze it onto the table, the floor, herself, and anything else she can find, and then dips her hand in it and licks it. It’s just the slightest bit messy.

Since we can’t maintain eyes on her at every moment of every day, and since she’s not one to miss a good ketchup opportunity, we had to find a ketchup containment solution. 

[Side note: ketchup packets are a good solution for that specific problem. The more general problem of helping herself to any and all messy liquids and sauces is actually what we’re tackling here.]

So, short of not keeping anything messy in the refrigerator, the best solution we could come up with was a way to secure the fridge somehow. We used the childproof slide-in latches for a little while, but she’s too strong for them now. So after a trip to the hardware store, here’s what I came up with:

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The key for this lock is on a string, tucked into the old plastic latch from the previous childproof lock. I just screwed it right into the fridge itself, and it’s held up well.

Easy enough to unlock:

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Now I should mention that we do not keep this locked at all times. We lock it only if there’s something she really wants to make a mess with in there, and we’re not able to keep an eye on her. It’s too much of a pain to have to get the key out every time you want to open the fridge. But at least we have the ability to lock it when the need arises.

Also, one of our daughter’s care providers is actually a manager for social services in a neighboring county. We ask her about policies and regulations from time to time, and she told us that from a social services perspective, leaving it locked all the time would be a problem. Something about preventing a child from having access to food — you know how goofy rules and regulations can be for things like this. I imagine if you needed to keep it locked, that’s mostly your business, but I wanted to mention anyway.

So, a trip to the hardware store, a price tag of under $10, and under 10 minutes to install, and it’s held up and worked well for us. I hope somebody else out there finds this helpful as well.

We need different words for different types of autism

When I tell people my daughter has autism, they often think of the kid from Parenthood, or maybe Dustin Hoffman in Rainman. I hesitate to even say the word “autism” to people, because they think they know what it means, but in many cases, they have very little concept of what our lives are like. They mention their friend’s child who has Asperger’s Syndrome. They imagine a quirky kid who doesn’t like eye contact, but who is a genius at math or music or dinosaurs.

And so begins (sometimes) a long explanation of our daughter’s capabilities and limitations. No, she doesn’t talk at all. No not even a few words. Yes, we have tried sign language, PECS, iPads, and other forms of communication. No, she’s not potty trained. Yes, she does look you in the eye, and smile, and snuggle sometimes. Other times she screams and bites.

And on it goes… No, she doesn’t have any savant-like superpowers. I appreciate the offer, but no, I can’t use your free movie tickets tonight. No I can’t just get a sitter. No, we can’t drop by your house with the kids, unless you want all of your antiques and knick-knacks destroyed. No, family camping would definitely not work. Yes, your trip to Italy sounds awesome, but no, I don’t think there’s any way I’ll ever be able to go there myself.

I’m not here to have a pity party. We’re getting by. Some days (weeks, years) are better than others. We do get out from time to time, or we do find creative solutions, like traveling separately, so that one parent can get away with our two boys while the other stays behind with our daughter, and the next time we switch. No it’s not perfect, but it really is better for everyone.

My main point is just that it takes a long time to explain, and even then, sometimes people don’t get it. I don’t mind them asking — in fact, I appreciate it when people really try to understand — but it’s complicated.

I could augment the word autism with some kind of descriptor, like “severe” or “low-functioning,” but I don’t know if that’s better. For one thing, it can sound almost derogatory, but for another, most people just have no concept of what it even means. Yes, I know that some people shun “labels” because “labeling” kids is “bad.” You know what? Labels are pretty freakin’ useful for communicating. Wouldn’t it be weird if we didn’t have different labels for cats, dogs, and fish? Or apples, oranges, and pears? I just wish we had some more useful vocabulary around the many forms and varieties of autism.

I don’t blame anyone for all this. People just don’t see it. They’re not exposed to it. If they were, maybe there would be more willingness to help families in these situations. As it stands now, at least in our case, it’s almost like a full-time job trying to manage paperwork and insurance and services and support groups and doctors and therapists. Only instead of paying a wage, this job costs you. And let me tell you it ain’t cheap.

Even within the autism community itself sometimes there is a lack of understanding. We have this umbrella term called “autism,” but a lot of autism support groups are geared toward kids who are not really like mine at all. They have presentations about study skills, social skills, organization, independent living. They offer child care for their meetings that consist of well-meaning Girl Scouts who couldn’t even begin to handle my daughter on a bad day, or possibly even on a good day.

All I’m saying is that for us down here on the lower levels, it sometimes feels like we’re forgotten. It sometimes feels like the resources are all going to people whose needs are not as significant as ours — or maybe I should just say people whose needs are very different from ours.

And sometimes that is frustrating.

 

 

Facing tough questions. Really, REALLY tough questions.

“Depend upon it, sir, when a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully.”

— Samuel Johnson

My daughter is 11 years old. She doesn’t talk, she understands spoken language inconsistently, if at all. She has not made any discernible progress on toilet training. She’s not really able to dress herself, clean herself, or otherwise care for herself at this point. We don’t know what her maximum potential is in the long term, but the idea that she will ever be able to live independently seems far-fetched at this point. On the one hand, I’ve accepted that. It’s a bummer, but it’s also reality.

On the other hand, that scares the $#!% out of me. My wife and I are not going to live forever. The thought of my daughter in some long-term care facility or group home just doesn’t sit well, even a little bit. 

If my daughter — let’s call her Abby — if Abby were neurotypical, I’m not one of those dads who would be sitting at the kitchen table, cleaning my shotgun when she went on her first date. But under the circumstances, I shudder to think what I’d be capable of if anyone ever tried to harm or mistreat her. Since I can’t necessarily be there for her forever, I feel like I need to plan ahead to make sure she’s taken care of throughout her (hopefully long and happy) life.

The problem of course, is this: if my wife and I are both gone, who would I want to care for her and look out for her best interests?

When I look at my options, no obvious answers come to mind. When I think long and hard about it, I can’t even come up with non-obvious answers, especially while her siblings are still too young. Aging grandparents? Far-flung aunts & uncles? Family friends? Taking her on is a huge responsibility, and one that most people are not equipped to deal with.

We’ve been skating along for years without really coming up with an answer to this question beyond the idea that she should go to whichever family member is willing and able to take her at that time. That’s a pretty bad answer though, especially for a kid who is struggles with routine changes in the best of circumstances.

And now we find ourselves staring into the face of the problem.

You see, my mom is dying. It’s hard to write those words. Facing a second bout of lung cancer, a cancer that’s spread not only to both lungs (one of which is half gone already from the last run in with The Big C), but also her lymphatic system, things do not look good. They’re doing what looks to me like a Hail Mary round of chemo, with no plans for radiation and no prospects for operating.

My mom’s upbeat about the whole thing, considering the circumstances. On the other hand, while I don’t think she’s willing to say it out loud to me, I can read between the lines. Based on what I know and what I sense, I will be surprised if she makes it to her next birthday.

And so here is mortality. Here is real life. The short list of family members who could care for our daughter has shrunk by one. I’m using present tense, because even with the best possible outcome, my mom’s not really going to be able to cope with Abby.

Our daughter does have Medicaid, which includes a pretty generous number of hours per week of in-home help, along with diapers/pull-ups and comprehensive medical coverage. But that’s just the tip of the iceberg as far as what she needs in life.

And that brings us to the other factor – if she were to inherit anything, she could become ineligible for those benefits. In fact, that’s what started this whole train of thought. I wanted to set up a Special Needs Trust for her in case some well-meaning person tries to leave her something of value when they go, I want to make sure it goes to a Trust rather than directly to her, so that she can continue receiving benefits. My mom’s health problems kicked my butt into gear and I made some calls.

What I found was that most of the law firms that specialize in setting these up bundle it (or at least suggest bundling it) with estate planning. Not that we have anything you might think of as an “estate” really, but it does make sense to cover everything at once.

So here we are. And I don’t really know what I’m doing, other than letting my brain swirl between what if’s and what’s actually happening. Sometimes you just have to get things off your chest. Hopefully just getting all this out of my head and posting it will help me process it better, and lead me to some viable answers. 

Thanks for listening.

 —

Review: Aqua Case for iPad from ThumbsUp

Like many kids on the autism spectrum (and countless other people of course), our daughter uses an iPad. She had trouble at first, just based on finger dexterity, but in time she has learned to use it for all kinds of things, including looking at photos, watching videos on Netflix, and playing games. Her favorite games are memory/matching games, and putting together puzzles.

Unfortunately, she’s also quite good at ruining tablets. The first one we got, she dumped her drink over. It wasn’t a malicious act, it was just a bit of over-zealous stimming. However, that didn’t help the iPad. The second one, we went all out, with the three-year “anything goes” warranty, plus a waterproof case. Belt and suspenders approach is always best with our little girl.

The case paid for itself many times over, helping the device to survive assaults from rain, mud puddles, drinks, soup, barbecue sauce, and ketchup. But eventually the case cracked and when our backs were turned, she tried to take it into the bathtub.

Thank goodness for that warranty.

So we got a third iPad and a second waterproof case, similar to the first. Unfortunately it cracked in the exact same place. So now, not only are we on our third tablet, but our third case as well.

You’ll find my video review above. In short, it’s not perfect, but it does look like a winner.

As if this writing, they’re under $30 at Amazon.

I Need to Know Where the Line Is

Words are tricky things. A cage is what you put an animal in. We don’t cage people. That’s Not Okay.

You may have heard the news about a child with severe autism being kept in a cage. For the vast majority of people, the first and only reaction is visceral, emotional, and instant. This is Not Okay. That was my reaction too. But as the parent of a child with severe autism, it also got me thinking.

If you read the article, you’ll learn that the child, and the family’s other children, all appeared to be healthy and did not show signs of neglect. Neighbors reported seeing all of the children regularly, and often looking happy. The report also says that the confinement was “possibly to control his violent outbursts”. The “cage” would be more accurately described as a “dog run.” Reportedly about five by three feet, with six foot high walls, no top, and a bed inside.

I can’t really imagine getting to the point where you think this is a good solution, but sometimes the problems are hard, and the solutions are not obvious. It got me thinking about alternatives. And it got me thinking about what’s acceptable.

Where are the boundaries between what’s okay and what’s not? And what constitutes a cage?

If you have a non-verbal wanderer with no sense of danger, is it okay to let them go in a fenced back yard with locked gates?

What about an enclosed patio with locks? Is it okay to put a hook-and-eye latch on the outside of his bedroom door?

Is it okay to turn the doorknob around so you can lock the door from the outside?

Is it acceptable to use one of these?

Is this okay because it has netting instead of metal, even though it’s smaller than what was described?

If that’s not strong enough, is it acceptable to use one of these instead?
What if your insurance pays for it? Is it okay then, even though it looks an awful lot like a cage?

Where is the line?

At what point does it become a “cage”? At what point do we say, yes, this is okay, but no, this is going too far? At what point are the parents “bad parents” who we are free to judge, whether we know the whole story or not?

Maybe all enclosures are bad. Maybe they should be able to roam free. (Even if they’re potentially a danger to themselves or others?)

Or maybe it’s not about the enclosed space, but how it is used. Maybe a child can be abused and neglected in a typical bedroom without any locks on the doors at all. Maybe a child can be treated in a loving, positive, caring way, even if they have a bed like those linked above. Not so sure about the dog run. But then that’s the whole question isn’t it?

When one side of the line is acceptable and the other elicits a strong, visceral reaction and lots of judgment, we should probably come to agreement on precisely where we’re drawing that line.

I’m not asking these questions rhetorically. I really want to know, because, among other things, I don’t ever want to end up on the evening news. I don’t think we’re anywhere near the line, but since I don’t know where it is, what if I’m wrong?

 

 

What’s All This Then?

Hello, and thanks for stopping by. I’ve been a fairly successful blogger in other contexts, and I’ve had some small successes in other fields – I’ve had my writing, my cartoons, and my photographs published on occasion. This will be something different. This will also be done somewhat anonymously.

I have a child on the autism spectrum. Diagnosed as having both severe autism and severe intellectual disability, she can present some interesting challenges for us. What we’ve found is that it’s hard to explain the challenges to most people, but for those walking a similar path, very little explanation is needed. I love to compare notes with other families. How did you solve this problem? What did you do about that issue? What worked for you, and what didn’t?

I hope for this to become a catalog of ideas and solutions. I’m envisioning a sort of Kevin Kelly / Cool Tools vibe, but with a focus on special needs, and especially autism. I’m sure we’ll side-track in other directions and onto other subjects as well. You never know where something new might take you.

I hope you’ll join me on what I hope is an interesting journey.