| Sept. 29, 2008 |
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This website is such a blessing to me. I started it as a simple way to keep relatives in the loop about Cody's daily life. And it has blossomed into so much more. It has created a network of other moms who are in frequent contact with me - mostly because they googled "infantile spasms" and up Cody's site came! These moms are priceless friends. They "get" it - they provide insights & encouragements that at times can only be offered by someone else in the trenches. And most recently, a new friend helped flesh out what I was struggling with in my last post. I talked about the problem that when Cody's left to his own devices, his behaviors and sensory needs take over and he turns inward and manifests negative behaviors. Here's the emails this new friend (also named Shawna!) and I exchanged. She is a child development specialist (lucky me!) and has a daughter who had i.s. but is now seizure & medicine free. I offer up exerpts of our email exchange in case any other parents with kids like ours and are struggling with any of these issues. If you're not in the world, it probably won't be of much interest. :) Hi Shawna, I read your post today and all I could think of was floor play! I am a child dev specialist and having a child with IS is heartbraking my only saving grace has been Dr. Stanley Greenspan. I think ABA is helpful in some situations but to get to true responsiveness there needs to be more than ABA. I use very little behavioral therapy with our daughter, I feel like I am treating her like an animal when I use some of these techniques. Please let me know if you have any questions, I would be happy to offer support! best wishes, Shawna.
Shawna, I am very familiar with Floorplay - and I guess I don't mention it as part of our equation because to me, Floorplay is just kind of a no-brainer, you know what I mean? Cody had a year of autism therapy that was floorplay alone - and it was great to work on that engagement and meaningful play. But for him, the combo of floorplay and ABA seems to be the winning ticket. He learns by ritual and repetition - partnered with high reward. So (on a good day) we work with him equally in our big playroom - following his lead - layering the room with toys that he likes and allowing him to approach them as he chooses. Problem is with him, he almost always needs initiation to do anything more than chew on things. So following his lead is difficult because that typically involves moving from one thing to another with no meaningful curiosity, play, or initiation. He literally roams the room - chews on the couch - bites the rope on the swing - hits the button on a cause & effect toy and walks away - climbs on my lap - slaps his hands against the window - chews on the couch some more, and so on and so on. So I allow the roaming because that's part of his ritual and it comforts/organizes him....I try to replace the negative biting and chewing with a chewie item or his binkie...I try to re-direct the negative banging windows to banging a drum...I jump in when he activates a cause/effect toy and sit with him to try to expand his duration of play...etc. Does this sound like what you're thinking of? I'd love any pointers to make it better/different. And, of course, sometimes I'm just tired so I just sit in the room with him and let him do what he wants. Having a 1 year old on top of Cody - it's so hard to always engage Cody - that's for sure!
Shawna,
It sounds like you have some experience with floor play. I use to think floor play was a no-brainer too, because any good mom plays intently with their child...Then I started reading more books (I think I have read almost all of Dr Greenspans material) he, in my opinion, is the only expert who truly knows what he is talking about. I can remember in one of his books he said," it is never OK to let a child retreat into their own world' we need to be in their space all the time sending the message "I am here and you are joining me, I am not letting you go". I can not remember what book this was in but it changed my view on therapy. I started to cry when I read this because it seemed so impossible at the time.
It is extremely exhausting having this level of engagement and I get help wherever I can (her sibling, our sixth grade neighbor). I will be cooking dinner and I will here her start to make noises or 'zone out' and I look at my husband and he goes running towards her (we treat it like an emergency, or like when she was having seizures). I see her stopping herself sometimes, she will start to stare up at a light and then look at me because she knows I usually interrupt and start singing (she is starting to self regulate and she realizes that she enjoys the singing/engagement more than retreating into her own world). However, It is a constant struggle, but it is getting much better. We are helping her create new patterns of behavior that I do not think she would have developed on her own.
As far as follwing the child's lead...........I do this in several ways I usually take what she is interested in and transfer this into a meaningful activity. For example, She used to love colored pencils(looking at them, feeling them, running them through her fingers) and we were working on fine motor skills and she had no interest in putting pegs in a hole. So I took a saw a cut all of her pencils down and placed them in the peg board. Each time she wanted them she had to take them out one by one, she eventually started putting them back in the board. She also loves when we make sounds in her ears (it sounds like Cody loves this too). So I purchases a ton of puppets and I would use the puppet to help me make the sound (cow, duck, frog) and she eventually started handing me the puppets....and now she makes the sound on her own .I think it is important ant to value their sensory needs and build on them so they can transfer into more meaningful experiences.
I also think ABA is good for certain situations and certain children and it can really compliment floor play. It is more extrinsically motivated and floor time develops more intrinsic motivation. I was taliking to my husband about this and I told him that I am not sure if she will ever live on her own (she is doing very well but still has many struggles) but either way I want her to be independent and intrinsically motivated. I get really nervous with some of the therapies they are doing with her in school because she waits for cues from an adult and I do not want to develop these patterns (extrinsic) I want her to be intrinsically motivated to the the best of her ability and leave a fairly independent life, even if it is with us forever. Best Wishes, Shawna
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