Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.

-Me

Sunday, November 19, 2006

Some Changes in My Blog Town (or More Accurately, a Few Changes on My Blog Only)

I've changed my Blog description and my profile description on blogger. I really just felt that in light of the past few months, with running pretty much falling off the radar at least for now, that they weren't accurately describing myself and my blog.

I thought about changing the title of my blog, but I love the word nefarious (Deviant Poop).

On Friday, the word was in from the U of M concerning Sandis's final diagnosis. For now, PDD-NOS was the word. The psychologist did explain to me that Sandis scored very high on the Aspergers Syndrome Diagnostic Scale, but that without a cognitive evaluation to show that he has an average to above-average IQ, she cannot make that diagnosis. We will have a cognitive evaluation done by the school and pending the results, she may change the diagnosis to Aspergers in the next few months. Regardless, PDD-NOS is sufficient diagnosis to ensure autism related services in the schools for Sandis. And that Rocks.

I have found the community of parents and caregivers of autistic youth to be wonderful. There is also an abundance of programs for developmentally disabled children through the county and city, and even local charities. The unique challenges of children that fall under the umbrella of PDD disorders are really being met, at least in my case! I wish I could say the same for type 1 diabetic children and their families. Maybe that is something I need to look into trying to organize. Perhaps I just haven't had the exposure to the right programs yet because Gracie's care is in the cities and there is only ONE pediatric endocrinologist in Saint Cloud (who is impossible to get into in any timely manner and does not have the diabetes support team behind him/her so it is kind of silly to seek treatment through him/her anyhow).

Bob bought me two books, Ten Things all Children with Autism Want You to Know, and Aspergers, the Universe, and Everything (which is written by a ten year old boy with Aspergers).

I am going to the family farm for Thanksgiving, leaving on Wednesday night. It is our first time back to the farm since both of the kids's diagnosis. I am doing things a bit differently with Sandis since diagnosis, and I am worried about flack I might get. I am just nervous in general. My family is very supportive, I don't know why I worry.

I have spent most of the day cleaning and doing laundry. God, I love Sundays.

3 comments:

julia said...

I've found more support online, thru the OC and the Children With Diabetes website than I've ever found in real life. The support group that met near where we used to live met at 9:30 a.m. on Tuesdays. Um, what? The other one was over an hour away.

We moved about 7 months ago and I've found far more support here, but still, I get most of the help/support/shoulder to cry on online.

Anonymous said...

Sarah,
I am thankful for you this Tahnksgiving! You will be in my prayers. You have taught me so much about perseverance, faith and strength. Have a great holiday and know that you are loved and supported by many whose faces you will never see. God Bless!!

Ashley loves Leo said...

I'll be keeping my fingers crossed, Sara, that things go well during Thanksgiving. Have a great one!