Advocate and mother

Tomorrow is a very big day.

It’s the day that we discuss the kinds of special services Lily is going to need in preschool.  I’ve already presented the district administrator (decision-maker) with a letter from the Rett specialist emphasizing the need for certain services.  Thankfully he complied with much of what was requested.  And he agreed to the preschool location, and to the classroom size. BUT.  But…

There are additional things that MUST be put into her IEP (individualized service plan for those of you not familiar with special needs lingo) which have not yet been granted.

It pains me as a mother to push for my child to have hour after hour of therapy.  I want her to enjoy preschool and to learn to socialize.  I am grateful for the NY Early Intervention program she’s participated in these past (almost) two years but it definitely lacks in the social skills enhancement category.  It is all one-on-one instruction (and for Lily, that means 30 hours of one-on-one instruction).  Preschool is going to be fantastic for her as she is such a curious and smart little person and is definitely interested in others.  But she can only take it so far as she can’t speak  (yet).  And she doesn’t have great hand use.  So – imagine trying to have a conversation or bond with someone when you can’t talk or use your hands.  My sweetie.

I digress.  Where was I?  Oh yes.  Basically tomorrow I need to advocate for Lily to get A LOT of services.  A lot.  Which means that she will be getting pulled out of the classroom many times, on a daily basis, missing so much of the socialization (and beauty) of preschool.

I want my sweetie to relax and enjoy and not have to work so hard all the time.  But I know that if we don’t keep up with all of her therapies (and then some), she will regress.  We see it every few weeks when the therapists try to pull away from a program which Lily has mastered to get her to learn something new.  A few days, or weeks later when we go back to the old program, she can’t do it.  She has to be retaught.  These programs are things like shaking a maraca, brushing her hair, going up and down stairs.

It is heartbreaking.  But Lily always relearns it.  Relatively quickly.

Hence the need for intensive, constant services.  I wonder when, if, it will ever end for her.  We’ve been so lucky with her therapists that they are so loving and kind and make learning fun (most of the time).  I pray that this will continue through her school years.

I pray that we find a cure soon so she won’t have to struggle so much.

And please say a prayer (or send a positive vibe – whichever you prefer) my way tomorrow as I’m feeling really sad that this meeting even needs to happen.


C and L


Preparing for preschool.  Learning 'quiet hands' while watching Zac Effron (her favorite).

Preparing for preschool. Learning ‘quiet hands’ while watching Zac Effron (her favorite).

Me, tomorrow.

Me, tomorrow.


2 thoughts on “Advocate and mother

  1. A mommy advocating for her child! There is nothing stronger. Prayers to both you sweeties. Hopefully what we call “work” will be more like fun for Little Miss L. Nobody could dare refuse you anything tomorrow.

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