Wednesday, November 03, 2010
Friday, August 06, 2010
1p36 Deletion Support & Awareness - Please Vote Today!
A group of parents whose children are affected by 1p36 Deletion have devoted their time and energy to furthering awareness and support for other families affected by this syndrome. These parents have created a non-profit organization, fundraised and hosted several annual conference where families can meet face-to-face with other individuals affected by 1p36 Deletion.
I am asking for your support to further these efforts by voting for 1p36 DSA at the Pepsi Refresh Project site. This cause is in the running for a $50,000 grant which would allow the 1p36 nonprofit group to create brochures and other materials to further awareness and more accurate diagnoses of 1p36 deletion in the medical community.
You can vote for 1p36 DSA every day (by both text and on the Pepsi Refresh website) during the month of August.
Please show your support by voting and passing along this information. You couldn't say no to this face, could you?
I know it's an old picture but it is one of my favorites. It was also taken before we received Brady's diagnosis when we felt so very lost, alone and confused by Brady's global developmental delays and other medical issues. Please vote for 1p36 DSA so other families can receive the information and support we have been so lucky to have found.
More information can be found at 1p36 DSA.
Thursday, May 13, 2010
Okay, so maybe he missed one important step (pants off)! But Brady can climb up on the potty all by himself without us having to utilize an expensive and bulky special needs toilet. We have been looking for potty training options which would accommodate a child who is older/larger than the average potty training-aged child and The Potty Seat is perfect. The supportive handles slide right off if you want adults to be able to use your guest bathroom. The stool can also be used by little ones to access the sink. Most importantly, it is helping bring Brady one step closer to being more independent. We have been working on this goal for about a year now and, although he doesn't communicate when he needs to go, we can usually sense the need for his #2 each day. The best part is, for a child with very low muscle tone in his trunk he is now able to eliminate more easily. We still use Miralax almost daily but the constipation issue has definitely eased with the use of the toilet for some reason.
That's enough poop talk - I just had to share this product because we have been searching for a really long time and love it.
Tuesday, March 30, 2010
There was an age-equivalent score of 11 months somewhere in the report. I forget the category of development to which this score pertained because I can not and will not dwell on that number.
Brady's expressive language skills were placed in the 4th percentile of the disabled population. I doubt he can even be placed on the chart for the general population. His almost complete lack of speech has disqualified him from every single speech therapy camp I tried to enroll him in for the summer. We are willing to pay thousands of dollars for these camps with adult to child ratios ranging from 3:4 to 2:10. They wouldn't take him. They said he is too disabled for those caregiver ratios. They said he has to be able to speak to go to speech therapy camp. Irony is a cruel bitch.
With respect to most other areas of development, Brady scored somewhere in the middle. I guess I would call it "pretty delayed."
I'm not trying to paint a bleak picture or evoke sympathy. These are the specifics of Brady's development. And we feel they are accurate for the most part. Troy and I filled out a questionnaire which yielded almost identical results.
And now things get confusing. Brady scored within the range of average for his age group in pre-academic skills. He knows his letters, numbers, shapes and colors. This qualifies him for a higher-functioning special education kindergarten classroom. We visited these classrooms and all of the children can talk. All of the children are toilet-trained. All of the children can navigate stairs and other hazards to which Brady pays little attention. None of the children wear helmets, as Brady does, so he doesn't injure his head or come home from school with any more black eyes. (This is starting to sound highly similar to a fretful post about Brady staring pre-school!)
He can learn. He is an exceptional memorizer of things, labels, pictures, landmarks. He can navigate my cell phone and his talker like nobody's business. He does silly things, purposefully, because he knows they are funny. He has found a way to tease me, to poke fun at things I do without using words. He is smart and resourceful. He is in there, even if he can't always communicate it. Other people see it too. I have been accused of exaggerating his condition because "he doesn't seem disabled." I have been excluded from discussions by other parents because he's not as disabled as their child. Yet it is becoming increasingly difficult for Brady to relate to his typically-developing peers, even those several years younger than him.
I guess all of this lands him somewhere in the middle. So we continue to carve out our support network, our family, friends and caregivers who get it, or compassionately try to understand. We continue to consult with other parents of the differently-abled and have been shown tremendous resources and support. We continue to hope for the best for Brady and are consistently reminded to be grateful for the middle.
Wednesday, March 17, 2010
Since We've Been Gone...
Someone now insists on feeding himself... doesn't spill a crumb of In N Out...
The healthy stuff is a different story...Some new things have proven more difficult than we bargained for...
Others... not so much...
Someone's seizures have continued... but are thankfully rather infrequent...
And oh, how we have all missed our little blogging world!