Tuesday, April 23, 2013


Today's gift is growth.

Being an advocate for your child with special needs is exhausting, sometimes frustrating and also rewarding.

For many in the special needs community around this time of year we start to cringe,  as spring means IEP and Eligibility meetings.  Trust me when I say....THEY. ARE. NOT. FUN.

This afternoon we had an hour and 45 minute eligibility meeting to determine if our daughter "qualifies" for special education.  Every six years they have to re-evaluate to make sure every student in special education still qualifies.  Clearly she still has Rett Syndrome...so she still "qualifies".  However, it isn't that simple.

Evaluating equals testing....which means in the past month my daughter has had four people perform tests on her over ten different days!  On top of her "regular" day!

Stop reading this now and give her a big round of applause!  Who wants to be tested PERIOD, let only for 10 days!

I think another reason "we", parents of a child with special needs, do not like these meetings is because it is a day (or days) of listening to what your child can not do, what is hard for them, and where they fall within assessment results.  No one wants to hear negative things about their child...no one.

Today was different.

While yes we heard what she can not do, we also heard more.  We heard from her entire team so much positivity.

Our daughter has taught so many people who work with her in the educational setting how to believe.  And she doesn't do it alone.  Just like Helen Keller had Anne Sullivan, our daughter has a special believer in her life too.  The bond the two of them share is priceless.  The bond and understanding between them is what makes my daughter's education a success!  The bond and understanding between them is what makes other's believe in my daughter.  I can tell you with 100% certainty that if the circumstances were different and my daughter did not have an "Anne Sullivan" in her life, the tone around her education would be different.

The common themes we heard today were:

  • We, the parents, actively seek treatments and evaluations from doctors who specialize with children in Rett Syndrome to make sure our daughter is getting the most current, up to date intervention possible----you better believe it....we promised her we would never give up on her!
  • Her social interaction has increased with both engagement and desire to connect since her evaluation six years ago---six years ago was the same time "Anne Sullivan" came into her life...coincidence....I think not!
  • Her observations this time reflect significant growth with compared to past evaluations completed at school
  • She has shown significant growth with social awareness and initiation with students and staff alike
  • Her receptive vocabulary is strong
  • She had 2 pages typed by her speech therapist of all she CAN do and how she has grown in the past 6 years
  • At this time it is difficult to determine the degree to which Rett Syndrome, especially verbal apraxia and motor planning, is impacting her ability to cognitively process tasks and respond in meaningful ways
The last thing I wrote is HUGE!  Since they can not get the information out due to her verbal apraxia and motor planning and since they BELIEVE in her so much and KNOW there is so much she wants to say...they are saying the results of the test are incomplete.  They will not put a number they do not believe in!

My 11 year old daughter has truly touched the lives of every single person at her school in some way or another.  Today, one of the therapist was crying....crying....in our meeting telling me, my husband and her peers (all 8 of them) how incredible my daughter is and how amazing it is to see her progress and how far she has come.  She believes in her so much and once you truly do, your life will change.  Needless to say, my eyes were not dry either.  And she was not the only teacher/therapist in the room to get emotional talking about my daughter.  To hear how my daughter has not only taught so much to the staff, but her peers melts my heart.  I know her peers are learning so much from her, I just hope they realize what a gift she truly is giving them.

So while I do not like these meetings, today's was different as we saw her growth in so many areas.  We know she has grown as we are with her every day.  But to see and hear it from another's perspective makes you look at the whole experience differently.  Although her verbal apraxia and motor planning due to Rett Syndrome signficantly impacts her ability to speak and coordinate motor movements and responses, she works hard to communicate with eye contact and facial expressions, smiles, words/sounds and her iPad.  I think it is safe to say, my daughter gives it her all and will not give up and doesn't want anyone else to give up on her either! 

Here are some quotes for today...

A good education is the next best thing to a pushy mother- Charles Schulz

I am only one; but I am still one.  I cannot do everything, but I can do something.  I will not refuse to do something I can do- Edward Everette Hale

Excellence is the result of caring more than others thinks is wise, risking more than others think is safe, dreaming more than others think is practical and expecting more than others think is possible- Howard Schultz

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