My boy has been struggling lately.  Within the past 2 months, we have nearly doubled his previous therapy schedule, adding an additional speech and OT session weekly because he needed the extra help.  In addition, he has started special education preschool where he goes 5 mornings a week for 3 hours each.

All of this for a 3-year old, but as we are all aware, this is what some of our kids need in order to progress and grow.

I am so excited for the potential – and there is such potential – for additional progress with the increase in his therapy program and the addition of preschool, but as you might imagine, the transition is a nightmare.  My boy has been a stimming, disregulated, hot mess, and it is wearing this mommy down.

When he is at school, he does not want to participate.  In fact, he stays to himself and keeps pretty quiet.  He does not bother or engage the other children.  By the way he sits quietly by himself, he is, by all accounts, a behavioral dream compared to his classmates who are all over the place.  However, what they do not see at school is how when he returns to the safety of home or the therapy clinic that has been our second home for over a year, his ability to hold it together shatters.  It is as though it has taken him all of his energy to just shut it all out in the morning, and by the afternoon he’s lost.  After a session with his private OT or one of his SLPs, or his aquatic PT, he is temporarily collected.

Clearly, they are doing something right.  They are all giving him tons of sensory input.  During this time of transitions and change, that is what he needs.

Under the direction of Jack’s private OT, we have started therapeutic listening again after seeing some progress with a previous trial, but nothing earth shattering.  We have also increased his brushing and joint compressions, which provides some relief.  The fact of the matter though is that there is a 3-hour segment of his day in which I have little control over his sensory diet.  I can make suggestions, Jack’s private OT, who I trust completely, can make suggestions, but we are both wholly dependent on the school personnel to implement our recommendations.

Now, some of the problems are completely beyond even Jack’s teacher’s control.  The class is at capacity and filled with kids of all abilities.  So, while there are the children who will run around and scream, there are the children – like mine – who will retreat and disengage.  He simply cannot handle the overstimulation that is created just by the presence of his classmates.  The result is a child – my child – who cannot participate or attend to tasks.

Some days, I wonder why I am sending him to school, but then I remember that it’s because I’m supposed to be providing him with social opportunities.  Sensory issues do not stop the world from happening to our children, nor should they keep him out of the educational opportunities to which he is both entitled and deserves.  A good day at school, to me, is not defined as no melting down.  A good day at school involves engagement, socialization, learning, and compliance, all of which can be bolstered or hindered by a child’s ability to regulate themselves.

I know I am not the only one that racks my brain with dealing with the school system, particularly when it comes to sensory issues.  It seems like a refrain I hear all too often from other parents.  School personnel are stretched too thin to implement sensory recommendations, or they lack training.  Schools focus so much on IEP goals that they do not look at the underlying issues that may impede mastery of those goals.  Even when schools provide occupational therapy, they tend to focus more on the fine motor aspects of OT than the sensory.

I try to maintain very open lines of communication with every member of Jack’s team, be they school-based or private.  As many of Jack’s therapists, teachers, and aides can likely attest, they get weekly emails from me about various aspects of Jack’s educational and therapeutic programs.  I try to keep myself in the loop and know what is going on, what is working, and what is not.  However, I am aware that in a school system stretched thin, concerned over budgets, and focused on standardized testing, sometimes the cries of a mom are disregarded, particularly when the child is easy…almost too easy.

My baby boy is so little – he’s only 3 – and he’s being thrust into a situation in which he is ill equipped to cope independently.  When he is at home or a private therapy and he gets worked up, he screams and cries.  He still participates though, just under protest and duress.  At school, he just retreats and refuses to participate.  Isolation and disengagement are the two things that I hate to see happen to my little boy.  Shutting down is a scarier way to see my baby handle overload, in my opinion.  I’d much rather see him enraged and melting down, because at least that is a reaction.

I believe this is part of his problem; he is so quiet when he gets overwhelmed at school that the teachers do not address it right away because he is being quiet and not getting into trouble.  It makes him one of the last to get support.  However, he will not attend and focus without the sensory input and the support.

It is always a fight for our children, is it not?

Parents – how do you get your child’s school to take you seriously and implement sensory recommendations?  Any ideas on how to make your child’s sensory diet more appealing and easy for teachers to follow?

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