communication

The older Sadie gets, the more communication gets to be a larger issue.  People look to me to be her voice... her voice for all aspects of her total care.  "Should I feed her, should I change her wet clothes, should I change her pull up, should I get her a snack, a drink, a toy, a game, shoes, socks, coat, sunscreen, should I stand by her side, assist her, hold her hand, give her space, hold her, sit with her, create an activity for her?" those are among the few questions I get on a daily, minute by minute, hour to hour basis when someone is caring for her who isn't capable of intuitively understanding the needs of a person, but more especially the needs of a person that can not speak traditionally with their voice.  This is probably the most challenging hurdle I've had to cross with her care givers.  Getting them to see her as a 7 year old and treating her as a person with choices, feelings, both physical and emotion, with needs just like any other child to balance her disability with giving her space has been tough.  I hate that people see her with out the ability to actually have choices and be able to have her wants and have those respected.  She is a person, a human being, a child.... presume competence people.

Sadie's new do

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> New hair cut!!!!
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St Patty's Day

Sunny days at the park

What a beautiful day to play at the park!

The Problem with "Problem"

I was recently at a birthday party and the dad of the typical developing child, referred to Sadie as having a lot of "problems" and that she need extra support. We were discussing childcare so that we can keep it in context. But, I have to admit, I don't think I have ever considered Sadie or her "issues" actual PROBLEMS.  For my life, with Sadie is what it is.  Sadie is a child, a person, she learns, thinks, moves, discovers, communicates, she loves, she hugs, she has pain, and does a lot that other children have outgrown, but I admit, I have never seen it as a "problem."  

I felt a great need to read some articles on the Disability is Natural website by Kathie Snow.  I needed to read her thoughts... this article was right on... "The Problem with "Problem"

The Problem, with Problem, is that I see the word "Problem" as something I can FIX because something is broken.  I don't see Sadie as broken, she is a whole a person/child as any other.  

http://www.disabilityisnatural.com/images/PDF/problem.pdf 

IEP meeting today

Today was another IEP meeting to discuss changing Sadie's label prior to her 7th birthday.  In the summer of 2007, Sadie was found eligible for special education services and was labeled developmentally delayed.  In our school district, children must have a label change by their 7th birthday to Intellectual Disability, Other Health Impaired, Developmental Disability, etc.  All of that requires some or all of the following,  updated social history, psychological evaluation (IQ), adaptive/behavior, etc.  We strongly feel at this point, we are not ready to "label" her ID, because we have many concerns with the implications of her IQ being in her record.  Let me ask you a question, would you want your child's teacher or other teachers to know their IQ? Do you think it would affect how they are treated or educated? Do you want anyone to know your IQ?  Would you post it on facebook?

Reminds me when she first got baby teeth

Heehee... Sadie has 3 adult front teeth and 2 adult molars and 8 baby molars left in her mouth. As strange as her teeth look now, I think they are beautiful and so much better than all the super crowded 8 teeth that were there.
I spoke to the cardiologist today and her ASD hole is still 4mm and VSD hole is a few mm. He said not large enough to repair in surgery. However he was very clear that she should have a follow up EKG and echo on her heart in 9-12 months. Should be done under sedation again too. Ugh. But good news none the less that se doesn't need surgery. Yay!!!!

"Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid" ~ Albert Einstein

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