Sunday, February 19, 2012

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 

Thursday, February 16, 2012

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?

Tuesday, February 7, 2012

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

Sent from my iPhone

Monday, February 6, 2012

Photos to go with the last post

Under Anesthesia

Sadie had 8 baby teeth removed this morning under general anesthesia. In addition, the two 6 year molars that came in defective due to hypoplasia (missing enamel) were saved and could be filled rather than crowned. Initially only 4 baby teeth were supposed to be pulled , but her mouth was just too crowded. We are so happy with the care and attention from her dentist and also the children's hospital team has been great.
While she was under, she also had a heart echo and blood drawn for a CBC, thyroid autoimmunity baseline, and food sensitivity.
We will be able to see her soon, after the heart echo is finished and she's taken to recovery.
Hoping for a restful afternoon and comfort for her little gums that are stitched up.


Sent from my iPhone

Time is a Thief

I don't remember the first time I heard the sentiment, "time is a thief." Recently it is heavy on my mind. I haven't post...