Tuesday, September 24, 2013

Post IEP Bipolar Disorder.

Post IEP Bipolar Disorder.  It's not real.  But it could be.  Even confident parents who get their kids all the things they need.  After IEPs that are good and easy, ask those parents when they come out how the feel...And after bad ones...well...it's just not as much of a surprise...

They are happy, positive, and hopeful.  And emotionally spent.  And verging on depression.  And even non-criers, find themselves on the verge of a soggy breakdown.

All at the same time.

Elise's IEP was really good today.  I led out with my two biggest concerns.
We now have on the books, a tentative plan in regards to her physically maturing and dealing with menstruation issues...thankfully, we are not anywhere near there, but better to have a plan, than be completely blindsided whenever it comes.  As of right now, the plan is to bail from school, until she is accustomed to expectations...and then we will revisit.
I also requested to hold her back next year.  She is thriving and growing and learning, and the elementary school offers her more typical opportunities at this time.  At my request, the facilitator/assistant principal, therapists, and teacher all started giggling and revealed that they too, were going to suggest that at today's meeting.  For the same reasons.  I was pleased to have such a confirmation to my convictions, and to have no opposition.
They responded with her achievements, her progress, and her maturity.  She has added sight words, she has improved in handwriting, she has improved in math.  She is attending a typical science class, 4 times a week.  In this class she is surrounded at all sides, with typical peers.  She keeps her hands to herself, she attends to the instructions, and participates in every experiment.  She has friends.  She loves to cut up, and defends her besties with a fervor that rivals a mama bear's instincts.  She can write her name in an intelligible manner that anyone could read, complete with an age appropriate colored bubble dot over her "i".  She can copy sentences with a competence, that most people could decipher subject matter if pressed.
She is making huge progress with speech, as I have bragged on before.  She is learning to use different key words as alternatives, when people do not comprehend.  She is making strides to become clearer.  She is learning that words have more value in stories than she even thought.  Her stuttering comes and goes.
The kicker that I (re)learned today, was that age eleven is typically when kids start losing therapy services when they neither progress, nor regress.  That she has made minimal progress, I am not shocked.  I live with her and stuff.  That we have reached a plateau, that it is highly likely will not change significantly, even into adulthood, is a blow.   
Remember back when I asked "When do you accept that this is where you are?"  This might be it on the physical front.
She is still progressing cognitively, she is still progressing in speech and communication.  But there is so little progress, and has been so little for so long in gross and fine motor, we shouldn't count on having too much more...
She may not ever be able to tie her shoes, button her shirt or pants, or snap snaps.  Even socks present a worthy challenge.  Her handwriting is unlikely to improve significantly.  She will always struggle with balance and agility.  She will struggle with many physical traits that will hamper her significantly.
Not that I won't continue to access therapy until they say "No".  A surprise benefit to holding her back is that, since she will stay in elementary school, she will also benefit from continued therapy services.  It is a guarantee that she will, at a minimum, lose half to 3/4 of her current OT and PT upon progression to middle school.  
Not that Little Miss Resourceful won't find ways around the *typical* way to do things.
But it is time that I start accepting that we have officially lost the wide open door of possibility.
It is time that I start looking only at her strengths and realize that if this is as good as it gets, it isn't "settling".  She is still an awesome girl and she is meeting her potential.  And that's not only okay, it's a good life, maybe even a great one; even if she won't have the life I had hoped for at her infancy.  She is certainly still cognitively expanding, and so that door isn't closing at the same rate...thankfully...  But, I cannot lie to myself, and say that things are going along at a bang up rate.
She is an amazing cookie that has an amazingly positive impact on everyone in her life.  She will continue to grow and make an impact.  I fully anticipate that she will pick the lock on the door of her life and make some spectacular splashes, but she might need more help than originally thought.  But really, wouldn't you want to hang with a smile like this for as long as possible?

However, I will be shopping for stretchy pants with no snaps and super fantastic shoes with velcro, for her as she takes over the world from her SECRET LAB OF POWER...Because there is nothing slowing that brain of hers down yet...just her fingers.


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