Balancing outside therapies vs. behavior/fatigue/stamina

mommyof4boys

Chris is in school for 8 hours a day and we do 2 outside therapies a week.  We were told to have a specific amount of each therapy and the school wouldn't provide us with some of it.  We were told 3 hours a week of PT, 2 of OT, 2.5 hours at least of speech.  The school is providing him 1 hour of PT only because we fought to get it, 1 hour of OT, and 2 hours of speech.  Right now we do an hour a week of OOP PT and alternate between land OT and aquatherapy. 

Part of the genetic syndrome is fatigue and stamina issues.  He gets increasingly tired as the day goes on.  I'm trying to balance his fatigue with giving him therapies now to help and bridge the gap.  The therapy place and I decided to do 30 minute sessions instead of hour sessions.  Instead of 1 hour session he'll get 2 30 minute sessions.  I got an e-mail last night from his morning teacher saying that she and Chris' afternoon teacher think that we need to back off on therapies after school and focus on what they have given him in school  He's starting to have behavior problems in school in the afternoon. 

 We are providing him the extra therapy because the school won't and this is what the geneticists want him to have.  He's had behavior problems at home since day one so this is not new to us.  I had told them it was going to happen where he stopped being "on his best behavior" and started testing the waters with them.  I am asking that next year he have ABA in the morning and Preschool disabled in the afternoon since he gets most of his IEP goals worked on in the afternoon with ABA.  But I also told them that as his academics become more difficult he was going to have behavior issues as he is working so hard on his balance while sitting, etc that he would become increasingly fatigued.  They didn't believe me that his tone and balance are that weak.  The PT also has the ABA working on motor skills in her room.

I'm going to C&P the e-mail I got :

"Good Morning Marissa-

A and I were discussing Chris yesterday morning.  We are seeing that has has an easier time in the morning and that as the day progresses, it becomes more difficult for him.  We both believe it is because he is getting tired.  We can only imagine how hard it must be to get him to cooperate after he leaves school.  We were wondering if you think cutting back on some of his structured time outside school might help.  As well intentioned as his extra activites are, it might be too much for him.  A little break from some activites, might be beneficial to his all around behavior, and increase the effectiveness of the ones he continues.  Just something to think about.  We both think you are doing a great job and will continue to support Chris in any way we can.

D"

 

I'm trying to figure out how to respond without sounding rude.  Would this be ok?

"D,

  I appreciate your concern for Chris.  We have provided Chris outside therapies twice a week to supplement with the school is providing as we were not in agreement with what was proposed in the IEP for Christopher but have tried to come up with an agreement we can all work with.  Although we have seen Chris' behaviors at home, it was only a matter of time before his honeymoon period with you in school was up and he started exhibiting them for you and A.  I am concerned and naturally don't want him misbehaving for you and A. 

 

   

I do believe that part of his behaviors he is exhibiting are due to fatigue and as what is being asked of him academic wise gets more difficult, his negative behaviors will increase.  I'm not sure that the change in afterschool therapies will do anything to assist in this.  I also think that A having to do part of the PT's work with Chris is adding to his increasing frustration in the room. 

 

Unfortunately, Chris' stamina and fatigue are aspects of the 16p11.2 duplication syndrome and are areas we have targeted to improve.  In the initial IEP meetings we held discussing Christopher it was discussed at length and also discussed in relation to his Physical Therapy need.  This is why we pressed the issue as we did.  I don't know what more to do to assist with this other than provide him with a myraid of therapies to help.  

 

I thank you for your concern with Chris as always,

Marissa"

 

What do you think of the reply?  And any suggestions for what more to do?