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Our second opinion

October 13, 2011

 I never blogged this because it was a confusing experience but I feel like its an important piece of our puzzle so I’ll blog it now before I forget the details.

We took Rett to what we thought was another diagnosis or something similiar to what we had experienced with Dr. Kellie.  Instead it was basically a mini opinion and a lot of coaching on RDI Floor Time which is what this lady devotes her life to using to help kids and also train other people to do this therapy.

We took Rett into the room which has a desk and also lots of boxes of toys.  She had us sit down and start talking (again) about our concerns and a brief history.  As we are talking, Rett brings some containers up to us to get us to open them.  She has us not open them to see what he will do. And then she starts pointing out ‘the signs’.  Awww.. the signs.  She also told us to play with him how we would if we really wanted to get him going. We picked him up by his arms and legs and threw him on this.. mattress thing she had.  And he would run off to get to the toys. She had to keep taking them out of the room.  And as you stand there not even knowing HOW to play with your child because you realize.. you don’t.  Suddenly it really starts to sink in.

It feels horrible to admit you don’t know how to play with your kid.  It isn’t that I wouldn’t love to play with Rett. I never was conscious of our relationship as play mates but I really don’t play with him. Because.. he doesn’t want to.  He would RATHER play with toys. Open doors. Let things fall.  He wants me to be in the room. He may want me to watch him and clap and cheer and smile at appropriate times.  But I’m his audience.  A lot of the time, he simply would rather play alone.  That’s a major problem. Because Tom and I really had to push and push and push to get him to play with us. A normal peer his age is not going to push. They are going to leave him in the corner and go play with someone else.  And he’ll be completely happy with his doors. 

She recommended that we basically get rid of all toys that didn’t function to get him to play with us.  If he spends hours playing with his trains alone, get rid of them.   I’m not really sure how Evie functions in all of this.  I guess we’ll wait and see how that works out. 

This therapy has some perks. For one thing, you don’t buy anything or pay anyone. You just play with your kid.  She told us that when Rett is making weird noises or acting out parts of his movies, he IS trying to get attention. But not the smile and laugh for a second kind. He’s saying ‘come play’, ‘talk to me!’. He is trying to start up some interaction with us and we haven’t been taking advantage of that.  So the therapy would repeat the noises he’s making, join in his dramatic play and instead of stopping his opening and shutting doors, try to figure out how to join in the game so it involves us and isn’t alone play anymore.   The problem I have with that is that I may know that the weird noises mean ‘play with me!’ but another child his age doesn’t know that.  I feel that he needs to have some new techniques that are more age/socially appropriate so that he can form relationships with other kids. 

So basically we got an overview of a therapy which even though we don’t want to use it.. at least we understood it more thoroughly before we decided to not just use this therapy.  We haven’t completley thrown it out but I definitely want to use ABA and see how it fits in with that.   But she did tell us that she sees the sign of ‘reciprocity issues’ where Rett doesn’t know how to begin social situations nor respond to someone trying to connect with him. 


One Comment leave one →
  1. October 14, 2011 3:12 pm

    I think using both can be very successful! We love the DIR floortime method, and we have seen HUGE progress with Sam. He still has a long way to go, but I can attest to the validity of this method. I also have friends who have had success with the ABA method, and I have friends who do a combination of both.

    I also want to say that what you experienced in realizing that he doesn’t play with you, is perfectly normal. Sam doesn’t like to play with me either although he is getting better. But I can relate to that feeling. It’s amazing how so many little things in daily interactions can add up to a diagnosis that seems just plain devastating. Any one of the little things, all by itself, might seem like nothing more than a personality quirk or a way for us to think, as parents, that we are missing something or doing something wrong. It’s so tough.

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