Friday, March 30, 2012

Hardest Decision in a while

Today we had Abby's yearly IEP...My heart hurts.

There are things we read as Rett parents. Things that are said..that we REFUSE to listen to. I have been fighting this battle for 5 years now.

They being the Doctors,Educators,Caseworkers,Authors...all at some point have or will tell us that our girls are Profoundly Mentally Retarded. Maybe not always to our face. Sometimes we find it in a report, a prescription or hear it in passing.

We read it in medical journals...God writing this...I think I may vomit.

This is the background to why we are so sensitive to the word in any way.

Yestaerday I felt as if I was told my child knows nothing....they didn't say it in that way..it was all stats and data days..choice of 2..less than 50 %

So...Last year at this time..Abby started seizure meds. When she did, what was left of my little girl slowly went away. She spends most of her days in a daze...but only at school. At the last IEP meeting I suggested half days and I upset her teacher so much that I dropped it.

A few months ago the observations of others really started to get to me. The notes every day that she slept from the time she got to school till darn near the end got to me. I just kept thinking...If they don't get her...If they don't believe in her. If they can't read her or give her the tools she needs, or adapt to her needs...I may have to pull her.

In the last week I got a report that she can only find her name about half the time..a little less actually. She can't identify numbers. She doesn't know shapes or colors. All things I can get her to do at home. I'm not gonna lie. She doesn't always perform for me. If she can't do it one day I try a different way the next. She has days where her little body won't do anything she wants it to. AND quite frankly...if someone asked me basic shapes,colors and numbers every day for 5 years...I think Id shut down on them too.

I believe that is what she is doing. She doesn't sleep at home. She doesn't nap during the day. You put her in school and she sleeps all day. I really think she is just turning off.

We thought...and it could be a possibility that the bus ride for an hour is putting her to sleep. My problem here is that when I take her anywhere she falls asleep almost every time. But when it's time to get out of the car and get moving she does. I have no problems.

If she is asleep when she gets home on the bus she is wide awake before we get in the house. Giggling and ready to go.

So....I pulled her from school. Not completely for now but we are moving to half days as soon as they can get a bus scheduled for her.

I have done everything I can. I will admit that I told myself going in today that if all I heard was that she sleeps,sleeps, sleeps then I was gonna pull the half day card. When I was handed a report that Abby performs at a 0-18 month level...and even those scores we're pretty low...it was all I could do to maintain. I had promised the teacher that I would not be an asshole this time and I wasn't. I didn't expect that report.

So here we are...Afternoon therapies will be moved to before school when possible. The fight for the My Tobii is on!My daughter talks with her eyes. She looks at what she wants. She can't talk...she can't touch...she can't sign. I have to help her. If I had a house I'd mortgage it to get her an eye gaze speech generator.

We are on the procedural list here in Missouri for those who don't have 20 thousand or so in their pocket. I have heard it takes years. I hope not. More than anything I hope not. At the end of most weeks I don't have 20 dollars so any suggestions for a fundraising campaign would be greatly appreciated.

PS:;To the IEP team...I know that my blog is looked at after IEP's and I get that. I see and hope for more in my child than you will ever be capable of. It is totally my intention to get her into a rhythm where she can function for all of us. My heart hurts more than I can express here. I understand your rules and I wish more than anything that you would let me come in there and volunteer. Take however long it takes to show you my Abby. No pay...no nothing. Just me helping you help her, I may not have any license or degree but I AM her expert.
Am I aware that she is cognitively impaired? Of course I am. I know her brain doesn't work the way it's supposed to...I just believe we have to work around that. She's in there. She is so much more than the pretty sweet little girl with the sparkling blue eyes. She has so much to say....I don't want to be the only one willing to listen.

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