Sadie had an AWESOME person do her speech evaluation today! I'm so excited to work with her and Sadie!!!!
Sent from my Verizon Wireless BlackBerry
Monday, August 17, 2009
Friday, August 14, 2009
sweetie would say
When I was growing up, there was the most amazing and wise man who lived across the street. I grew up in the country, so across the street was a 10 minute walk across 5 acres. When we were older we called him Sweetie, but as a kid he was Mr. Snyder. To my mom, he was James. This wonderful man knew many things, and he lived a great life with sadness and of course love and happiness too. He was a rock of support and words of advice. He was never judgemental and he always had a kind word to say. We spent lots of time with he and his wife growing up. He always smiled and never had a harsh word. You knew he would support anyone not matter their mistake because he knew we all make mistakes. That was the kind of man he was. I've been thinking a lot about him today because of the humble life he lead, the smiles that he shared and the wise words he passed on to my mother that she passes on to me. She might say in a time that I need comfort, "Sweetie always said a little bit at a time, baby, a little bit at a time." Many times in my life, I have come back to the words of wisdom that he passed on to me. The words that made life seem simpler. I think about the compassion he showed other people because he knew he didn't live in a glass house. People are cruel. People are compassionate. It amazes me. Sadie has opened my eyes that people have flaws and people are human no matter their genetic defects, tics, physical deformities,0 why do people have to be so cruel to people that just can't help the way they are. Oh ignorance is bliss. Life is life even if it isn't perfect.
Saturday, August 8, 2009
Thankful
Today I was feeling the need to read other stories about other children with chromosome disorders. I googled blogspot to see if I could find any other families who write about their children. I know I do this when I'm feeling on the blue side. It always helps me to read about similar situations and find some comfort in other stories. The compassion that one mother has for another mother who also has a disabled child is an unbreakable bond.
Mostly my mood was prompted because my husband watched a 20/20 segment about a girl with Autism who they thought was severely disabled and unable to communicate. On day at the age of 11 she spontaneously started typing on the family laptop. The family had no idea their daughter had so much to say and she really was able to tell about her disorder in her own words. I'll post a link to her site soon.
So like I occasionally do, I googled chromosome disorder blogspot and family stories. I scrolled down the list and clicked on Noah's story. http://noahgrantjohn.blogspot.com/
I feel so touched and moved to have read part of Noah's story. He was born September 2005, the same year as Sadie. The first picture on his site was a picture of where he was buried last week. He wasn't yet 4, but he shares a common bond with Sadie...they were both born with RARE Chromosome Disorders. I feel so thankful that Sadie is here on this Earth and with us. Tonight I grieve for little Noah and his family. May they somehow find peace and comfort. My heart goes out to them.
Sent from my Verizon Wireless BlackBerry
Mostly my mood was prompted because my husband watched a 20/20 segment about a girl with Autism who they thought was severely disabled and unable to communicate. On day at the age of 11 she spontaneously started typing on the family laptop. The family had no idea their daughter had so much to say and she really was able to tell about her disorder in her own words. I'll post a link to her site soon.
So like I occasionally do, I googled chromosome disorder blogspot and family stories. I scrolled down the list and clicked on Noah's story. http://noahgrantjohn.blogspot.com/
I feel so touched and moved to have read part of Noah's story. He was born September 2005, the same year as Sadie. The first picture on his site was a picture of where he was buried last week. He wasn't yet 4, but he shares a common bond with Sadie...they were both born with RARE Chromosome Disorders. I feel so thankful that Sadie is here on this Earth and with us. Tonight I grieve for little Noah and his family. May they somehow find peace and comfort. My heart goes out to them.
Sent from my Verizon Wireless BlackBerry
Friday, August 7, 2009
Sunday, August 2, 2009
Pretty Girl
Sent from my Verizon Wireless BlackBerry
Friday, July 31, 2009
Debatable Postings
Sometimes I wonder if I should post real scenarios with the really people in our life. I would hate it more than anything to offend anyone, but isn't that part of sharing her story??? Does anyone really read this anyway?
So here goes...Sadie had a speech evaluation on Monday, which I consider to have been a waste of time. While the therapist giving the evaluation truly meant well, I would like to think that when I tell you she used a standardized test you will understand that that means showing a notebook to Sadie with a choice of 4 pictures. She said please point to..., but when I told her that Sadie won't do that or understand that she said well I'll ask her to circle it instead. When she asked Sadie to circle/pat the skunk. Sadie didn't respond to pointing/patting/or kissing the pictures. She simply wanted to hold the therapist's pen. I asked her what level she started on...she responded 4 year old....AFTER, I had already told her that Sadie's receptive language is 18-20 months and expressive language is 6-9 months old. AMAZING. Needless to say, She went to the beginning of the test and got NO results. I continued to explain that we want to focus on basic communication/sign language/picture choices with photographs/concrete objects.
So here goes...Sadie had a speech evaluation on Monday, which I consider to have been a waste of time. While the therapist giving the evaluation truly meant well, I would like to think that when I tell you she used a standardized test you will understand that that means showing a notebook to Sadie with a choice of 4 pictures. She said please point to..., but when I told her that Sadie won't do that or understand that she said well I'll ask her to circle it instead. When she asked Sadie to circle/pat the skunk. Sadie didn't respond to pointing/patting/or kissing the pictures. She simply wanted to hold the therapist's pen. I asked her what level she started on...she responded 4 year old....AFTER, I had already told her that Sadie's receptive language is 18-20 months and expressive language is 6-9 months old. AMAZING. Needless to say, She went to the beginning of the test and got NO results. I continued to explain that we want to focus on basic communication/sign language/picture choices with photographs/concrete objects.
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