Wednesday, January 25, 2012


When a child is diagnosed as being on the spectrum, hopefully at a young age, it is recommended that as much therapeutic activity be crammed into their life as possible. Some programs, such as ABA therapy, requires a solid 40 hours per week. This in not a route that we are currently choosing for Max, and he is by no means getting 40 hours of "official" therapy a week. Max attends school through the district autism program four mornings a week. Two mornings a week, we have private OT and speech. The rest of the therapeutic activity pretty much falls on us to take care of at home.
I am a firm believer in applying what is learned in therapy or school, to real life. Yes, Max is only three, but autism is a life-long diagnosis and for us, the whole point of therapy is to help him achieve the highest levels of life skills so that he may be a productive and independent adult. We have been very lucky to work with amazing teachers and therapists during the past year that have the same goals for Max and are more than willing to help us trouble shoot issues we are having at home. I can't even picture how much more stressful our lives would be without the things we have learned from them this past year. Really, they are simple things, but they have made a huge difference in our life. They have helped us to understand the very different way that Max's mind works and how to use that to our advantage.
Until you are in the midst of all this madness, you can never really understand how all encompassing being on the spectrum is for some people. It affects the whole family and almost everything that goes on in daily life. Many people have asked me to share some more specific details about certain things we have done with Max so that they can either learn more about it, or to share with others who are in the same situation. I am more than happy to share what we have learned because I think that awareness leads to understanding and acceptance. When you have a child diagnosed with autism, it's very hard to know what to do next. They don't give a schedule of treatments, everyone has their own, very strong, opinion of what should be done and finding accurate sources of information are nearly impossible. It's important to keep in mind, that every child with autism is different. They may show similar signs and characteristics, but that doesn't mean certain treatments or approaches will work for them.
With that in mind, here are some things that work for us (or we are trying to have work for us!!)-

We recently had a massive fail at potty training. Max shows all the signs of being ready. And with two babies on the way, I thought- let's try it! It took literally hours of prep work to get things ready before we could even start with Max. For months, we had been regularly putting him on the toilet and not expecting anything from him. Just getting him used to the idea. Then we bought big boy underwear. We talked about them and made a big deal about them. I got them all washed then we started putting them on him. At first, it took two of us to get his screaming and kicking little body into a pair of totally adorable Wonder Pets underwear. The first few attempts were ugly- he would scream and cry for them to come off. In these situations, we do a "count to ten" and then take off approach. Eventually, he gets used to it and we don't have to count anymore. Once he was sitting on the toilet ring and wearing the underwear without a fight. It was time- or almost time.
I bought extra sweatpants, a step stool, M&Ms and extra chocolate for me! Then it was time for the visual aids. A lot of people with autism are very visual. Words and language often confuses them and makes it hard to follow patterns. But give them a visual schedule of the events or a visual cue and everything is crystal clear. I've talked about social stories before and really they are so, so helpful for Max. The idea is that you break down an event into simple manageable steps with easy to understand pictures. I make ours on PowerPoint, print them out, laminate them (because he will look at them a lot and destroy them otherwise!) and put them on a ring. Then we start going over the story with Max- again and again. Pretty soon, he has it memorized and looks it often by himself. The important thing, is to follow through with the steps the way you did in the story- because that's how it's all playing out in his mind. Swaying from that established routine will upset him greatly and you basically have to start over... Here's what our social stories look like:

The other thing that we did was put laminated pictures of toilets up throughout the house. The idea is that because Max has a hard time telling us what he needs, he can just grab the picture and hand it to us to indicate he needs to use the toilet. This is a very common method of communication in the autism community and it's called PEC, or Picture Exchange Communication. You can read more about it here. These pictures can often be found for free online and easily used within your home.
 We also found a free graphic of the PEC toileting schedule. These are posted in the bathroom, right next to the toilet. They are a simple walk-through of the toileting routine.
Once all of this was in place- I gave it a go. And it was a massive failure! In the first day, we had 13 accidents. We tried a couple of times the next morning, but it was very obvious to me that Max was not understanding what was expected of him when we was on the toilet and that he was unable to communicate when he needed to use the bathroom, despite the visual aids. His frustration levels were sky high and big belly was making it very hard to be up and down every couple minutes, and to clean up messes. So it was decided that a couple of other skills need to be mastered before we tried again. (And I would not be the only one home with him during this trial!!)

So our plan is to find a movie that models the toileting routine. Movie Modeling helps walk kids through the successful sequence of events of a certain event or task. They use this a lot at Max's school and he seems to really respond to it. Of course, Dave and I could make a movie to depict this, but that seems to be crossing all sorts of weird lines!! No thanks!
And the other thing- the key thing- is to work with Max so that he understands that when you need something- and it requires help from someone else- that you must GO to that person and indicate your need. Our plan for this was to put a new cabinet in the playroom with a lock in it. Some of the things that he likes (not loves- it would be mean to lock those up) are in the cabinet and there are pictures of the contents on the outside door. When he wants something, the picture is supposed to cue him to come ask us for what he would like. We also try to make sure he walks over to whoever is going to help him and makes his request face-to-face instead of just hollering for it.

Before getting pregnant with Max, I knew potty training was no easy task. But I had no idea is was going to be this complicated!

We also recently started The Listening Program upon the recommendation of our OT. Max listens to "pretty music" (aka classical music with nature sounds) through special headphones that don't allow outside noise in for 15 min., twice daily. When he does it at home, we usually does his sensory bins (small tubes filled with popcorn kernels, rice and dry beans). The idea with music is to help him learn to focus on the task at hand and to filter out whats going on around him. We also have hope that it will help with the non-stop scripting he does. I am keeping track of behavior changes, etc. and at the end of six weeks, we'll see if it's helped at all.

There are a couple of other things I'd like to get in place before the babies so I have to get my rear in gear.


Kelly said...

Goodness. Potty training was difficult here, but never anything like you're going through. You're such a good mommy. Big hugs to you and sweet Max.

Ashley said...

Kudos to you!!!

LO said...

You are such an awesome mom! I've seen a lot of kids with autism suffer because there parents didn't want to put in the work (and it is work!). What you do at home is better for Max than 40 hour a week ABA training. You rock!

B. Wilson said...

I'm surely not a mother of living children right now (yet), so I can't comment on that. However, I am a certified teacher with experience in the classroom working with my own autistic students and I just need to commend you and encourage you.

You guys are doing SO well by Max. It's an insanely hard job to be a mother, let alone one in your shoes-- but you're doing so well and I'm sure that the small successes are surely magical. Love to you, mama!

LauraJane said...

I think the story books are a great tool, and I'm glad you've taken the time to work on these things in a way Max can understand. I'll before linking this post for my friend, I think she would find this helpful.


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