My email chain with the school district:

Names have been removed to protect everyone.

I sent this first letter to the PT and OT assessor.

Hi…,

After some consideration, and in part, because I didn’t know I was supposed to have the discussion at the IEP, I feel like I have to strongly disagree with your recommendation of only 120 minutes/year of pt, especially considering the safety concerns and the fact she can’t actually access the equipment without maximum adult support.  Not to mention the fact that she’s been in intensive PT since her last IEP and she’s only been able to maintain her skills – more PT would allow her to progress and actually access the school equipment.
This is a condition that requires constant therapy or she will regress.  The phrase “Use it or lose it” is the one the doctors gave us.  We will continue to supplement, but the fact that we are paying for 2 hours of PT/week through private insurance should in no way affect your recommendation.  She 100% needs the therapy and that needs to be provided by the school.
I’m hoping to avoid going through any lengthy process on this and you have to agree that she needs consistent and direct PT.  Not to mention the fact that the doctor recommends at least 3 hours/week.   So, I’m hoping you agree and I don’t need to to continue to fight for it, where I’ll end up winning, regardless.
Thank you for your help.

No response.


Hello,

Following up on this.  Can we establish one of her goals as maintaining her current skills?  That’s an extremely important one to us and without proper therapy in school this is the one she will have extreme difficulty achieving.
Please let me know that you’ve received these notes and let me know your thoughts on the matters?
Thanks,
AJ

No Response


Hi            ,

Just to let you know that I have emailed both                  and                   cc’d here to express my concerns about the goals set and the services offered.  I am awaiting their response.

 

I am a little disheartened that no one was able to consult an expert in Rett Syndrome as I had requested, and as is Maggie’s right, before these goals were established.  And apologize that I didn’t know I had to be so insistent.

 

We do not have the luxury of time here.  Every day that Maggie does not have appropriate services is another day that her skills can regress, making it more and more difficult for her to achieve the goals set out for her.

 

Let me know what is in my right to pursue and how to do it expediently.  If I can’t engage anyone in these conversations, I’ll likely have to request a program review and have experts at said review, so we can establish appropriate goals for her and accompanying appropriate services.

 

Thanks for your help,

AJ


 

HI AJ,

 

I am sorry that you are feeling disheartened by this process.  I have spoken to … and … and both feel it would be most appropriate to attend the reconvened IEP to address your concerns.  I have sent an email to … to determine if she has completed her assessment.  I know the nurse has spoken to you and we now have information regarding Maggie’s health in the IEP which we will also go over.

Please provide me with some dates that will work for you to reconvene the IEP and I will then consult with everyone to see what will work.

 

 

 


 

 

There’s nothing more important to me than this.  Maggie has a doctor’s appointment Wednesday afternoon and the AAC assessment takes place on Tuesday.  So, any time after that should work.

 

And thank you.  Can we make sure there’s a Rett Syndrome expert present at that meeting?

AJ

 


 

Hi AJ,

 

I believe our team of highly qualified educators and therapists have familiarized themselves with the unique needs of a child with Rett’s Syndrome, specifically with regard to motor delays, speech delays, and autistic-like behaviors, and how these characteristics may impact Maggie’s ability to access the preschool curriculum at McRory.  Please let me know what specifically you feel a Rett’s Syndrome specialist would be able to bring to the IEP team that we may have not yet addressed.  Of course as Maggie’s parent you are always allowed to invite anyone you wish to the IEP and we would welcome and listen to their input as part of the IEP discussion.


 

Hi      ,

I appreciate your support of your staff, and have seen it first hand how much they truly care and want to help.  But, I’m afraid their experience, and no offense intended here, but distinctly as it relates to Rett, is insufficient for them to accurately assess her needs or determine her goals.  While I don’t know their experience completely, I do know how many rett children are in the district and am extrapolating the amount of experience they have from that information.
Your description alone gives me additional reason to insist on the district consulting with a Rett expert.  Girls with Rett do not have “autism-like behaviors” and I fear anyone making that comparison does not understand the severe apraxia, and the FACT that her social and cognitive skills are completely in tact.  Similarly, talking about her disability in terms of delay is, inaccurate.  She had expressive language, fine motor skills and age appropriate motor skills until Rett Syndrome hit.  And she still has them, they’re just locked inside a body that doesn’t respond.  We should not be talking about this in terms of goals targeted to delays but, instead talking about this in terms of creatively devising goals targeted at accessing finding ways to get her to access in order to allow her to access the school and gain an age appropriate education, and .
While you all have worked with kiddos with autism may I ask what have you have found to be the significant differences needed to educate a girl with Rett?
It would help me to know……..
How many girls with Rett they have worked with.
how many are using a tobii to communicate – how many eyegaze trials have they run
What approaches to building communication do they employ
how many of their girls with rett are generating words of 2-5 words in length
how many are building foundational phonemic awareness skills for later decoding,
How many girls in the district are reading (not listening to books) and writing
How many girls are included in the general classroom
What strategies have they found successful for the above?
I understand you are looking at the individual kid and not the diagnosis in establishing goals and services.  But, with this particular diagnosis, consideration for the diagnosis must be considered.
I’m attaching the vitae of the consultant I have connected you with in the past.  In order to set an appropriate program for Maggie, I believe, at the very least,       and you should consult with        .  It is imperative that     and the Tobii representative discuss with her as well before the assessment, if for no other reason than to get the Tobii pages with which she is already familiar.
I’d recommend         and        speak to the Rett Clinic nurse, Debra Brown, at Children’s Hospital Los Angeles.  Her direct line is 323-XXX-XXXX.  She can speak in general about the distinct needs of Rett children as it relates to her OT and PT needs.
We have an advocate I’d also like to join us at the IEP, but she’s not in town until the first week of November.  Can we schedule it then or does it need to be sooner?
Thank you very much for your time.  I hope I’m not coming across too aggressively.  I’m just looking out for what’s best for my daughter.
Looking forward to the meeting,
AJ

 

 

 

What do you think? Am I being too harsh? Or am I being a strong advocate for Maggie? Tell me in the comments what your honest opinion is.

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