can we help these kids? (to mad dog)

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Registered: 12-24-2004
can we help these kids? (to mad dog)
1
Sat, 05-14-2005 - 4:35pm

Christine,

I thought your question after the discussion of ASD cognitive traits was very poignant, and I didn't want to leave it without an answer or at least an opinion. You know, I'm just bursting with opinions on this stuff;)

Anyway, I do strongly believe that we can help kids with ASD's to develop better cognitive and behavioral strategies, but it is extremely hard work. Even as a psychologist, I cannot do this myself. I depend on many others in our team of interventionists. I also can totally identify with your feelings as a mother, that sometimes you just want your kid to move on to an independent life, so your life will be sane again. Perhaps, this is a taboo thought, but I sometimes even find myself wishing I had never become a mother. Before Cassian, I was a high achiever with a terrific husband and many fewer moments of stress and self doubt. Of course, I also love Cassian to the ends of the earth, and I know that in many ways he has enriched my life.

I work on practical cognitive skills mostly by using RDI (Relationship Development Intervention) and floortime. Gutstein, founder of RDI, has a pretty good DVD on how to do their approach and they also have a book for older kids and adolescents, if you are interested (www.connectionscenter.com). I also use a combination of behavior mod and cognitive training for discipline. I am currently reading The Explosive Child by Ross Greene, which is very helpful if you have a child with frequent emotional breakdowns. We use social stories, read books about social issues that are pertinent, do dramatic play to illustrate social problems, etc. Lately we started experimenting with antidepressant drugs. We do OT, ST, and music therapy. We have also tried the GF/CF diet and vitamin therapy, but those didn't change anything for us. I just keep adding to my bag of tricks. Because these kids are so different, I think we need to customize treatments for them.

I should say also that I am very fortunate to have a great husband, who is a partner in doing therapy with Cassian. We have meetings periodically, and I discuss all additions to our program with him. He is a real natural at taking what I suggest conceptually and implementing it with our son. He is also fantastic about knowing when I need a break and forcing me to take one - - I'm a terrible workaholic, who would be prone to burnout without Tim's support and advice.

I won't say that our kids can all come off the spectrum, but I do think they can grow and change and attain better functioning through intervention. To help them move ahead is indeed a difficult task, however, and each parent will have a different way of addressing this important issue.

Suzi

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Registered: 01-19-2005
Sat, 05-14-2005 - 5:19pm

Dear Suzi and Christine,

I don't mean to interrupt, but I wanted to say too that Suzi's cognitive trait explanation, as usual was great. I've come to depend on you for information like that and really appreciate your input. I too have a whole file of your posts that explain things in easy to understand terms.

But I just read Christine's post and although my child is young (3), I too already get hurt feelings from him shutting me out. Your thoughts moved me too. For Eric it's the "momma go away" thing when he is in his own private little world that upsets me. He doesn't mean to be hurtful at all, but it still hurts me. I worry too that if he can't understand consequences with things in his material world, understanding relationships etc. is even more complicated. I have to keep telling myself that he can't help it and that he learns a little more each day. He's a different child than a year ago before any intervention.

I try to be hopeful. I know Eric, relative to other ASD kid's I've seen, has done so well. But I still crave an emotional closeness from him that is missing. I just hang on to the times that he is affectionate and try to remember those. I am a very emotional, nurturing kind of person, so this is hard for me.

Suzi, like you I am lucky to have a great spouse. Keith relies on me to do the research, but once I tell him what to do, he is usually better at it than me because he is a teacher. He's used to students with different learning styles etc. and more creative than I am.

I can see how social stories are very important. We're starting to use them more and more. I'm even trying to incorporate them into floortime, if the opportunity presents itself. We do lots of stuff with Thomas trains, odd as it may sound, but he loves them so we go with that. We "act out" social situations using the trains (like you might do with dolls or stuffed animals). That seems to help quite a bit.

On another topic but related, we're also struggling with the idea of adopting another child. We had previously said no more, but now are thinking of it again but we just can't decide. One day it's yes, another no. It's partly my wondering about my stamina, I'm 42 and Eric takes a lot out of me. It's partly DH's concern for finances, if Eric continues to need care into adulthood, and he might.

Sorry to go on and on, just wanted to say I appreciate this board and don't know what I would do without all of you!

Katherine