February 26, 2010

My house looks like a preschool

In my last post, I wrote about some of the things we're doing to help Moe learn to respond to his name. I'll admit I am not doing a great job of not saying Moe's name throughout the day unless I have an immediate reward, but I have been pretty good about saying his name when he is looking right at me. And things seem to be improving, although slowly.

Another thing Moe has trouble with is asking for help or requesting something. If there is a toy that Moe can't get to, he'll just move on to another one. If there is something that is frustrating to him, he might whine a lot or get very upset and cry, but he will never, ever ask for help, even just by hand leading you to what is troubling him. If you don't understand that other people can help you, or know that you can make things happen by asking for them, the world must seem like a very frustrating place.

So how do you teach a child that he can get what he needs by asking? Unfortunately, we have to make the world an even more frustrating place. So I've been working on a project I'll call "toy lock-down." I started by boxing up a lot of the toys, labeling them with my awesome new label maker, and putting them on the shelves in the living room. I was quite satisfied with this arrangement.

living room shelf

It turns out, however, that this wasn't enough. These toys, although they are great ones for use during therapy sessions, aren't actually very interesting to Moe. So he moved on to other toys. We also decided to clear the shelves in the living room and his bedroom so that we can put just two or three boxes out at a time and have Moe make a choice, like "Do you want cars or beads?" Unfortunately, the answer to that question is usually "Neither. I want the shopping cart with all the lights and sounds." So, enter phase two.

Shopping cart is in the garage, available only when we bring it in as a very high value reward. Other lights and sounds toys have been either boxed up or hidden away. Every box will have a picture of the item or items inside. Moe's closet, a favorite hiding/hanging out space, now has a childproof lock on it. We've added a tent in our living room so that he has an enclosed space to hang out it, but in a more social way. Here is where we are now:



There is more still to do. I need to free up another shelf. I have to finish taking and printing the pictures. I have a few toys that we're going to give away because we simply have too many. So far, I haven't seen any improvement with requests ("manding" in ABA-speak) and it breaks my heart to keep taking toys away from Moe. I imagine him sitting in the middle of the room doing nothing while there are boxed up toys all around him. Actually, he probably wouldn't mind that. Moe is more motivated by snacks or a favorite video, so we'll be using those as well and taking it one step at a time.

February 20, 2010

Everything I needed to know about raising a child I learned from training my dog

When Berkeley was a puppy, we went to a puppy training class. She learned some basic commands, like "sit," "stay," "heel" and "come." I know what your thinking. If you've been following this blog or know us at all, you'll know that Berkeley isn't the most well-behaved pup. But she is extremely smart, and is very quick learner. If I have a clicker and a treat, she'll do almost anything. So she aced that class (and many others since), and one of thing most important things we taught her was her name.

Teaching a dog her name is simple. You wait until she is looking at you, then say the name, click (or say "yes!"), and give a treat. Soon you can say the name when she isn't looking, then if she turns to you, click and treat. Before long, you say her name and she'll come running for that treat. Eventually you can back off the treats. It is simple behavior training using positive reinforcement. During the training period, you also need to be sure to only use the name when you have a positive reinforcement (i.e. don't say "Berkeley, no!"). The name needs to mean good things.

You can then use this to work on the recall. Jeff would put Berkeley on a 50 ft. lead and I'd go to the other end. Then I would say "Berkeley, come!" If she came running, which she usually did, she got a treat. But she also had to learn that it was not an option to not come. If she didn't come running, Jeff would bring her over to me, and then she'd get the treat. Soon enough, we didn't need the lead, and we could actually hide behind trees in the park and shout for her to come find us.

Usually, you don't have to teach a person to respond to his or her name. You naturally say your child's name often and they pick up that it means something. It seems so natural that you turn your head when you hear your name that it feels more like instinct or reflex rather than a learned behavior. So what do you do when you have a child like Moe who doesn't respond to his name? Well, it's back to basics: positive reinforcement.

We've been working on a "response to name" program for a while with minimal success. So we're focusing on it more heavily now. I am supposed to say Moe's name only when there is a positive reinforcement available (treat, desired toy, tickles, etc.). We are not supposed to ever say "Moe, don't do that." And we are supposed to set up situations so that when we do call his name, he has to respond. If he doesn't respond on his own, a second person will walk him over. Even if Moe doesn't completely understand why he has to come or look at you when he hears his name, it can become a learned behavior.

Of course, it isn't as easy with a child. First, try not saying your child's name unless you have an immediate treat of some kind. Second, Moe isn't just motivated by a treat like a dog is. He has complex wants and needs and we don't always know what they are. He tires of the run back and forth to mom and dad game much more quickly than Berkeley does. And, like a lot of things with a two year old, when Moe doesn't respond, it is hard to know if he doesn't understand what is expected or if he just doesn't want to do it.

The good news is, it does seem to be working, though slowly. We've seen some very clear examples of Moe looking right at us when his name is called. Of course raising a child is much more complex than raising a puppy, but in the end, we humans are just animals and we like our treats (in whatever form) just as much as the next creature. I just hope and I can keep my kids off the Clomicalm.

February 12, 2010

Budget Cuts

One of our concerns when we first started early intervention (EI) was whether we could get appropriate services for Moe, given the California budget crisis. By law, California must provide appropriate services for all qualified children, but of course "appropriate" and "qualified" are squishy terms. We've been fortunate enough and pushy enough to get the right services for Moe.

At the end of January, I attended a parents' meeting with our ABA provider about budget cuts that are coming their way. I learned a number of interesting things at this meeting.

First, parents are having more and more success with insurance. It is always a fight, and often takes many months of appeals and reviews, but parents have been able to get insurance coverage for autism treatments, including ABA, speech and OT. The providers love when they do get insurance clients; they get better rates, fewer hourly caps, and can provide more services, especially with kids over 3. This is because health care providers are concerned with "quality of life" where school districts (who manage services after age 3) are only responsible for addressing issues that affect educational success. Our provider believes (or maybe hopes) that insurance is the future of autism coverage.

Second, I learned that many more parents than I realized are paying out of pocket for their kids' therapies, either entirely or to supplement what they are getting from the school districts. Many of the parents at the meeting were from an excellent nearby school district (not ours), but one that I'm told doesn't have great special ed services. I've heard good things about our school district, which doesn't contract with the center but provides their own programs. But until we see the specific program that we are offered, it is hard to tell. We're going to start looking at some of the other agencies around just in case.

Third, I learned that the Regional Centers and the School Districts are being much tougher with their definitions of "qualify" and "appropriate." Where 80% of our provider's clients used to be big (25+ hours/week) programs, 80% now get fewer than 10 hours. Their center-based program is filling up since the RCs are more likely to recommend a cheaper center than an intensive home program. This is what happened to us. Fortunately, we got second opinions and very strong hints from the center director that Moe needed more. We pushed to revise our IFSP, and we got more. But not everyone knows enough to push for that.

Of course, providing fewer services during early intervention is only going to cost the state more in the future. Kids who don't get services early on are more likely to need more help later, continued services into high school and adulthood, including job training, self-help skills training, home assistance, etc. With the rates of autism rising, this is a potentially big financial burden building for the state and the nation as a whole. But the state is not run like a business, with a long term fiduciary duty to its stakeholders. The state lives budget year to budget year, and our kids are the ones who are going to suffer. There may be a number of problems with insurance companies covering autism care, but they are savvy businesses, and likely to take a longer term view of the problem.

So far, state budget cuts have only affected my family a little bit. At Moe's latest IFSP, we had to get a denial of coverage letter for speech and OT services before the RC would pay for them. Our ABA provider has had to reorganize to brace for the cuts but our program was only affected a little bit. But as we prepare for our first IEP and transition into the school district in May, I have a feeling we're going to start feeling the crunch a lot more.

February 5, 2010

Jelly Belly plays the keyboard and gets an attitude

Yesterday, I went to a local used kids' clothing and toy store to sell some of our baby things. While they were evaluating my stuff, I looked around the store and found a couple of cute toys to buy for the kids. One of them was a little electronic keyboard. We've been wanting to buy Moe a keyboard for a while, but were afraid he'd get too interested in all of the buttons and controls to remember that there was a piano there too. But for seven dollars, I couldn't resist!

Moe likes they keyboard, but Jelly loves it. She can't get enough, and last night she wanted it all to herself. Musicians have such attitude.

February 2, 2010

...And it's only Tuesday!

It's been one of those weeks.

Jelly's first tooth broke through this weekend. I thought that was the reason for her recent night wakings, and it probably was at first, but now she also has a cold. It's a bad one. I have never seen so much snot in my life and neither one of us is too happy about it. The last few nights she has been getting up at 4am and the only thing that seems to help is a bottle (formula for her, pinot noir for me).

Moe may or may not be sick. He woke up yesterday and today with a runny nose, so I canceled his therapy sessions. But then he seems fine the rest of the day. Is he already fooling me into skipping school? He's actually taking a nap right now, so he probably is sick. I just hope I don't have to spend the next 4 days wiping his nose. Unlike Jelly Belly, he can fight back.

Then there's Berkeley. This week, we started her on an anti-anxiety medication. It's brilliantly called "clomicalm." So far, she does, in fact, seem calmer - mostly sleepy, but the vet said that was normal for the first few days. I'm not actually sure if her sleepiness is because of the meds. It might be because her tail is hurt. That's right, Berkeley busted open her tail. "How did she do that?" you ask. By wagging it. Berkeley gets so excited when anyone comes in the house that she wags her whip-like tail hard against anything in its path. Most of the time, that's the wall, and a couple of days ago she busted her tail right open. And, here's the thing: it's not the first time she's done this.

So today, Jeff comes home for lunch to check on everybody, and Berkeley goes nuts. Blood is spraying everywhere. Walls, furniture, the baby things I had all cleaned and laid out because I'm getting ready to sell them. It's unbelievable.

I just got an email asking for updates for my MBA class notes. Two of my classmates just got married. Another just published a book. I'm washing bouncy seat covers and cleaning blood off the walls.



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