It’s Not All Roses.

Yesterday I wrote about how amazing our school support has been.   And for the most part it has been.  But, today I am going to tell you what I am really ANGRY about right now.  It is a school board level issue and I have been making phone calls and writing emails all week.

Over the Summer Sara was tested for, and diagnosed with, Central Auditory Processing Disorder.  For those of you who are unaware – this is not related to her hearing.  She actually tests as having slightly better than average hearing.  If you think about hearing in terms of beeps and tones, she can hear more beeps and tones than the average person.  But her ability to process (understand) audio input is disordered.  It is a brain based issue.  Once her brain receives the audio input it screws it all up!   People with CAPD struggle to hear in noisy situations.  They struggle to tease out the teachers voice from all the other classroom noises.  Often an FM system is prescribed.

FM systems amplify the voice of whoever is wearing the receiver by feeding the sound directly into the users ears and thereby enabling them to hear/process the information better.   In Canada our public school system provides FREE FM systems to anyone who qualifies.  We knew this.  But given the severity of her diagnosis we decided to purchase a system out of pocket allowing her the ability to use the system on weekends and during school breaks.   Well, apparently that was what screwed us over.

A few weeks ago the school board audiology team met with me at the school to discuss how they could support Sara with her diagnosis.  There was an initial bit of confusing conversation as they did not know we had purchased our own FM system and the fact that we had was clearly mind-blowing.  Once that was sorted we were told that the protocol for issuing a school board FM system is that they observe the student for  a period of time, (most kids do not already have a system) and then they trial them with an FM system, and observe some more.  If there is a noticeable improvement in learning they go ahead and prescribe a system and provide all the teacher training and support.  In our case they wanted to TAKE AWAY Sara’s FM system for a period of time to observe her etc. and again determine if it was completely necessary.  If so they were happy to come on board with any and all supports needed.  Apparently a diagnosis and her self reports were not proof enough

I flat out refused.  I said it was not possible to remove the system as she has become so reliant upon it.  That she is emotionally attached to it, that she is currently struggling with even being at the school and that the FM system is VITAL to her success in getting comfortable there.  In fact, it is currently her only support.  I think I was in shock. They explained that this was the process and that maybe we could defer the trial until January when she is more comfortable and can tolerate the removal of the FM system for a period of time.

But now I am angry!  CAPD is legally regarded as a disability and Sara is protected by all the same rights and benefits of any other legally disabled person.  They would never ask a child to drag themselves down the halls to prove they need a wheelchair!  Heads would roll if they even suggested that a child go without their prescription glasses for a period of time.  To me this is a Human Rights issue and I am appalled by how it is being handled.

So now I have been emailing and calling the entire school board.  Slowly making my way up the ranks.  I am being met with a lot of  comments like “What a unique situation” or “Well that doesn’t seem fair” but no one is willing to be the one to change the procedure.  So up the next rung I go.  Today I called the highest person I could and she was rather sympathetic.  I think she may be the one to get some movement on this.  My next call will be to the media.   Will keep you posted!

***Update – After a long battle I was finally able to get approval from the School Board to have the School Board Audiology team to come to Sara’s school and provide support (teacher training and technical support) to the school to get Sara’s FM system up and running within the school!  YAY!

 

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