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All Things Rett

November 17, 2014

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Out of all of us, Rett has definitely had the most difficult time transitioning to the awesomeness that is the new house.  Not a huge surprise.  He calls my in laws house ‘home’ and this house the ‘new house’.  He kept asking to ‘go home’ for awhile.  Then we went back over to get some stuff and he realized it was empty.  He seemed to calm down a little bit after that.  Everyone has their own room now so he has his own space and a bunk bed.  He’s been getting a little scared at night so I had to fix him up a night light. He hasn’t had his own room since we moved here when he was 3.

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Therapist transition has went fairly well.  It has been sort of nice to start with a blank slate with the speech therapist.  We have a strict no crying rule and this has seemed to break the habit of crying from frustration.  If he doesn’t cry he gets a sticker at the end. He is very big on going home to show his sticker to Daddy. Such a people pleaser, that sweet boy.  His OT seems very sweet and seems to have the same problems we’ve had all along where he doesn’t react to the activities like he should. If she does arousal activities, he remains tired, if she does calming activities he remains wired.  I may try to add another hour of OT during the week and see if he benefits from it.

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We also started a new music class at the therapy clinic. Its not for special needs kids so it sort of is a stand in for a basic music class you’d get in school.  They play with instruments, do movement and sing, play with parachute and at the end the parents come in and they show off something they learned that day.  They both really enjoy it.  I’d love to get Rett back into swimming but none of the lesson times are good for our family. They are all at 5 o’clock and twice a week.  So right now that’s all he’s doing but I would like to get him into some other activity eventually.

His speech results after we moved and with his new therapist did show gains from when Amanda did the eval back in January but the delay was startling.  His speech was set at 3.5.  Which means this year, Thaddeus will pass him up.  God has put it on my heart that I have to learn acceptance and let go of how I think things should be all the time.  We are doing what we can but I have made a decision that he can’t live his life in a therapy clinic.  We’ve done that up to this point.  With fewer sessions and a much shorter drive time (3 minutes!!!),  we are all enjoying being able to have a life.  My prayer is that God meets up half way and helps Rett with concepts and processing.

Rett continues to be such a good boy and has such a sweet heart.  It is hard to watch him struggle and have frustration with something he can not help.  I had hopes that we would be in a different place at this point but it just hasn’t happened.  Focusing on the positive,  on how easy he is to love and how blessed we are that he does want to be social and that he has play skills has helped.  The desire is there, the skills will come.  I just wish it didn’t have to be so hard for him.

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