Going back in time for Spaz

23 May

Jackie stopped by and asked:

If you could go back in time for Spaz, what do you think should have been done to better his outcome (in any and all areas you care to comment on).

Wow. That’s so tough, but I think it’s important for any parents who do have children with severe autism and behavior problems. It’s important to realize that back in 1985, when Spaz was born, no one knew much about autism, let alone interventions and services. So just being born later will improve the prognosis for most kids. Spaz was born 12 weeks premature, so he’s actually lucky just to be alive. Even 30 years ago, that may not have been the case.

 

First off, I’ll say there is no substitute for diligence as a parent. What I mean by that, is holding firm to behavioral expectations like a dog on to a bone. I’m drawing from my own experience as a parent here, and therapies come and go but parental consistency is the one thing that stays the same. Hopefully. Jane and I were hyper vigilant early on, and this paid off as Thomas grew older. And this leads to a second thing: you can not do it alone. Jane does an excellent job and takes the bulk of the credit but I’m in there as well. It helped being in the field and actually trying out some interventions that I was learning about, like floortime, discrete trial, pivotal response training, ABA, augmentative communication, PECS and video modeling.

 

If I had to recommend one publication for parents who are seeking peer-reviewed literature on Autism, it would be Focus on Autism and other Developmental Disabilities. This is a journal but it has stuff that an everyday parent would find interesting. Jane would get it before me, and read the entire thing before she’d let me have it. The Journal of Applied Behavior Analysis is okay, but it quite technical and not specific to disabilities and autism. The Journal of Positive Behavior Interventions is another journal of practical interest, especially for teachers.

 

The reason why I recommend knowing the literature is because the temptation towards fads in inescapable. So many people are out to cash in on the epidemic, that if you have little to on knowledge, you’ll become just another proof of PT Barnum’s maxim.

 

Jackie mentioned in her comment that her son has many of the behaviors Spaz has. Keep in mind, Spaz has actually improved and matured since I got him 6 years ago. I went to work on his most serious behaviors, which were hitting, kicking and scratching the crap out of all of us. Almost all of that aggression is gone, now. Now we’re working on the spitting, self-gagging, biting stuff and potty training. We still have a long way to go, but one has to understand how far we’ve come. So if a child of 8 years is where Spaz is now at 21, there’s time for making even more improvement. Sort the behaviors from the most severe, and work on them accordingly. Be aware that new behaviors can and will probably pop up and have to be dealt with.

 

Boys and masturbation: I’m not quite ready to go there, but it is something to look forward to into the teenage years! Spaz’s wiring seems to have spared him this ultimate of self-stim behaviors or maybe it just hasn’t hit yet.

 

One thing that really helped Spaz and Thomas was being around peers. Not necessarily non-disabled peers, but peers who were a bit higher functioning that were social. It’s when Spaz got interested in making friends that he really made strides with the aggression. It was the same for Thomas and the potty training. Once he got around classmates who were all potty trained, that was it for him.

 

Spaz has had access to all sorts of therapies including OT, PT and speech. His mother really has done well taking him out, enrolling him in activities and making his life as full as can be. But he still has a tendency to tear the house apart.

 

It’s hard to say what I would do with a younger Spaz. Sometimes I think I should have went after the potty training more aggressively myself earlier on, but I was still acquiring knowledge myself. I did the best I could with the physical and mental resources that I had. And really, that’s all any parent or teacher can do. It’s interesting to think about what we might do differently, and I hope I’m doing things better nowadays. That’s why I prefer looking forward to looking back. I know I made mistakes back there and that’s where I’d prefer to leave them, while carrying the lessons forward.

dick

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3 Responses to “Going back in time for Spaz”

  1. Jackie May 23, 2007 at 5:11 pm #

    Dick,

    Thank you for your comments. I will look into the recommended publications.

    I think that there are probably two things I should take away immediately from what you said:

    1. First off, I’ll say there is no substitute for diligence as a parent.
    2. …I prefer looking forward to looking back. I know I made mistakes back there and that’s where I’d prefer to leave them, while carrying the lessons forward.

    My husband tends to think like this, but for some reason it is easier to take advice from a stranger who knows something about the topic than from those closest to you. Not to mention it is difficult to keep it all in mind when you are exhausted by the day to day dealing with severe autism.

    I will have to day that our son, too, has made strides since he was diagnosed. I think the hardest part is looking down the road and wondering what will become of him. People are always saying to stay focused in the present, but that is easier said than done as I am sure you know. I tend to get easily overwhelmed by the what ifs rather than dealing with the what nows. I’m guessing I’m not alone in that.

  2. Jeanne May 23, 2007 at 8:36 pm #

    My name is Jeanne, and My son was diagnosed when he was 3 with Aspergers. I am pleased to offer you all a light at the end (or rather mid way through) the tunnel. He is 17 and will be a senior next year. So things like potty training, masturbation,and aggression will come to some level of managability for you and your child. Just speaking from where my son and I are now, I promise you that the best of what we struggle to endow them with will stick with them and serve them well in life.
    And when family/friends ask you, things like”do you think he will be able to get a job when he is older? Just smile, take a deep breath and say’ no one knows what tommarow brings, so why don’t we focus on his lunch.
    And lastly, If anything tests my stamina as a parent it is those uneducated and intolarent. I am not only a parent , I am an undergraduate majoring in education K-6. I wittnessed a group of education majors who watched a video of a young boy with Downs Syndrome. While they watched the boy exhibit agressive behaviors, they laughed as though they were watching The Three Stooges.
    So if you can just keep in mind first and formost why we work so hard for our children, then others will learn, in time.
    By the way, that group of college students, They had to listen to me as I chastised them and reminded them that they would undoubtedly have special needs students in their classroms. How willthey deal with those challanges?

  3. Dick May 24, 2007 at 6:57 am #

    Ha! The same is true in my house, Jackie. Despite my years of training and experience, some stranger has more clout in my house for Jane than I do! I will say that maturity does bring a lot of relief in most cases, as I see that with those I teach and my own kids. It’s important not to get too discouraged to the point where you give up.

    Thanks for the encouragement, Jeanne! Go easy on your younger, less experienced classmates tho. You’re right, they will have to deal with some of these things and worse, and it’s only then that reality will really sink in. I was an education major long before being a parent and remember being clueless about dealing with stuff I have happen routinely today. I was lucky enough to have some patient and inspiring role models around at some critical points in my career. Now I’m having to learn how to BE patient and inspiring for others! It’s not as easy as those folks had made it look just a few years ago!

    dick

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