There is a little boy with Angelman Syndrome in Australia who has been in status (continuous seizures) for six weeks. I cannot fathom the horror. I can’t imagine having the strength to keep going every day. I can’t think of anything that is sufficient to reply to this family with.
The scariest part, the part [...]
I was reminded of a line from a Robert Frost poem.
Two roads diverged in a wood, and I –
I took the one less travelled by,
and that has made all the difference.
I always liked that, and I like to think that I never was the kind of person to follow the pack, go with the flow. [...]
Look up Maddie’s UBE3A test results and post it verbatim here.
Its interesting to compare with other parents. And astounding that such a small misprint has such immense results.
I’d recommend the movie “Song Of Our Children” to everyone reading this blog. I have seen it five or six times over the past three years, and each time I cry, learn something new, and feel affirmation that I am doing the right thing. If anyone would like to see this DVD, please let me know via [...]
Earlier this summer, I was honored to talk with a local girl who was running for Miss Monroe County. I actually talked to her on the phone for about an hour while driving through Pennsylvania on my way to New Jersey. Her pagent platform is “raising awareness of people with special needs.”
Her main “project” is [...]
One of my many character flaws or “issues” is that I second guess myself. There is a fabulous mom who lives down the road from me. She is also a resource teacher at our school. Tigra is definitely a ”supermom”.
Tigra’s oldest son has a disability. He is, and I’m guessing here, 18 or so? Her other 3 [...]
I’m lucky enough to be on an Access To Recreation committee through our Community Foundation with a very good friend of mine. We are basically the consumer/family representatives. While trying to explain in a 30 second soundbite the current core issues facing accessibility, she came up with this gem…
”Understanding the physical access part is easier, [...]
