Monday, September 27, 2010

blowing raspberries....not funny to the speech therapist

"Sadie is a wreck today, " was the first thing the pregnant twenty-something-first- time-mom speech therapist said the moment she saw me in the lobby of Sadie's school an hour ago.  She continued to describe how Sadie was blowing raspberries or zerberts and she continued to tell her "no" and sign "stop" during her short 20 minutes of speech therapy.  Her therapy session is at the end of Sadie's half day preschool. She continued to describe how Sadie thought it was funny and continued even though she said "no" and signed "stop."  She was genuinely frustrated that Sadie continued to do this. And truthfully, Sadie looked like she had been crying, which is VERY rare. 

Okay so Really?????  Sadie IS intellectually disabled, she has the intellect of a two year....what the @#$% do you think two year olds do.....they blow raspberries and zerberts and they think it's funny.  Honestly in the scheme of life is blowing raspberries and zerberts REALLY that bad.  Sadie is essentially non-verbal, so how else you you expect her to communicate?  The fact that the speech therapist found it necessary to complain over something so small the moment she saw me is concerning.  Hell, she's luck Sadie didn't poop in her underwear or pee all over herself.  Hell, how about starting the conversations with a positive comment first and then pick your battles.  Really? Blowing raspberries is the definition of Sadie being a wreck today in a 20 minute speech session???

GRRRRRRR...........


 

Friday, September 24, 2010

Blogger Hibernation

I think I'm ready to come out of blogger hibernation.  I started this blog knowing that my audience was "me."  I thought a few people here and there might read it, but really it was for me to express my feelings and in many ways, this blog became my friend.  The friend I could tell anything to, share anything with, without judgement.  Ironically, I have been saying for the past few months that I have been hesitating to write because I was nervous about Sadie's article and I knew the blog would be mentioned, I didn't know who would be reading it after it was in the paper.  


But I just realized that might have had nothing at all to do with my lack of posting.  I just now in the last 3 minutes and the previous paragraph realized that I haven't been sharing because I didn't need to.  


In the past 3 months I bonded with two of the most amazing women. They see me truer than anyone ever has..they both have children with special needs and they know exactly what life is like.  The unspoken connection that the three of us share has brought a sense of peace to the craziness called my life.  I have spent the past 5 years isolated from nearly everyone and I just now realized how much happiness they have brought to my life.I realized just how lonely I have been.  We have been sharing everything with each other and it feels good to have such wonderful friends.


We meet for coffee, or share a meal, we cry through movies, and we even give support with hugs and crying together.  We know each other, we KNOW.  With a look, a phone call, or a text, I know I've got friends for life.  


And so I'm ready to come out of blogger hibernation because I have a lot to share now, wonderful things have been happening and I feel like I'm living again.  And so the sequence of events that keep leading me to something new all started right here with this blog, this friend that I counted on and I could tell anything to, all thanks to Sadie giving me a new perspective on life and taking nothing for granted.  


I'm looking forward to sharing more....for starters....Have you seen the movie Extraordinary Measures with Brendan Frasier and Harrison Ford?  The movie was inspired by the true story about the Crowley Family in the novel The Cure by Geeta Anand.  John Crowley also wrote a memoir, Chasing Miracles.  Anyway, our local children's hospital is hosting its annual bioethics conference and John Crowley is the key note speaker for the day.  Anyway, as one thing has lead to another, as it always will, I was asked to sit on the parent panel at the conference.  Anyone that knows me knows that I'm pretty shy, so the thought of sitting on a stage in front of 200 heath professionals scares the @#$% out of me.  Thankfully, I have several more weeks to calm my nerves and read The Cure.  Chasing Miracles was powerful and hit home.
Looking forward to more blogging....






Monday, September 20, 2010

quote

"Justice will not be served until those who are unaffected are as outraged as those who are." -Benjamin Franklin

Wednesday, September 8, 2010

Virginian Pilot Article

http://hamptonroads.com/2010/09/sadie-will-never-grow-and-her-parents-will-never-give?cid=srch

Sadie

Sadie always playing with her tongue.

The only photo from Sadie's first day of school. hmmmm, I had good intentions of taking a lot, I just don't know what happened?