Tuesday, October 25, 2011
Generation X Doesn't Want to Hear It
Open Letter to that 53% Guy
The Bugle Podcast (warning, contains lots of swearing)
My Redeemer Lives (you will need kleenex) More information about Team Hoyt
(and for more inspiration...you know I love Signing Time, but Rachel Coleman's personal story is pretty inspiring as well. This post in particular "Strong Enough."
Thursday, October 6, 2011
Home Eye Safety Month
National Breast Cancer Awareness Month
National Disability Employment Awareness Month
National Medical Librarians Month
National Physical Therapy Month
Sudden Infant Death Syndrome Awareness Month
Tuesday, October 4, 2011
It's my own fault to some extent, but it also underscores the fact that just because we have children with the same condition, doesn't mean we're going to be besties. I'm not friends with mom's who have brown-eyed children either. Having a child with DS only gives us one thing in common. It may be a jumping off point, but so far, for me, it's been like the motorcyclists who wave at other motorcyclists as if to say, "I acknowledge you and approve your mode of transportation," but have no other interaction.
Anyway, so despite not being too involved in our local DS group, we wanted to go to the Buddy Walk this year because Rachel Coleman from Signing Time was the featured guest/performer. I mentioned previously that E signs. Most of her signing has come from watching Signing Time. That's her (left) watching Baby Signing Time at about 18 months. She's progressed through everything they've put out and we're eagerly awaiting new episodes. Given that Alex, Leah, Rachel & Hopkins have been in our house everyday for the last two years, we jumped at the chance to go meet them.
I worried that E would lose her mind seeing Rachel, but she didn't. I think it was because we see her everyday, why wouldn't she be somewhere. What really drew E's attention, though, was Hopkins. He was really fun.
During the performance, E turned away some of the time even though Rachel & Hopkins were singing some favorites that she's asks for - In a House is one E likes to sign before bed, Magic Words was the first song that I noticed E signing/singing along to in the car, Signing Time Theme Song she likes to sign along with Rachel...preferable looking in a mirror - anyway....E didn't lose her mind like I thought she would but it was fun nonetheless. The highlight was at the end when Rachel sang The Silly Pizza Song.
She asked what was first and I signed apple, then what was next (crackers), then she saw I was signing the list and asked what was next (ice cream), next (I said bread but it was wrong and quickly corrected to cereal), then next (bread), when Rachel said you should come up and sign...so E and I did! Big Daddy was there to video (below), so you'll see us doing so. Unfortunately, E didn't show all the signs she knows (she's really awesome at extra cheese) probably because of the speed (we do it slower at home by ourselves) and the distraction of Rachel & Hopkins, but it was fun. At the end, Rachel looked over to me and said, "You're very brave," and I said, "We live you," which is true. Signing Time music and videos are a constant part of our day. But my love letter to Signing Time must wait for another day. Until then, here we are at the 2011 Buddy Walk.
It's October, which means I'm behind already for the 31 for 21 Challenge in support for Down Syndrome Awareness. So, I'll be double posting to catch up (probably all month) and finally writing down some thoughts and activities that have been going on here.
Sunday, August 28, 2011
There were many fun moments (like when Big Daddy had the Director so wound up (which is very unlike him...go Tiger Dad!) she looked to the Asst. Dir and asked her to explain what the Director clearly didn't want to answer), but my favorite was when I took the pre-written letter out of my file, signed it and passed it over saying, okay, we're done here, we'll let you know about any evaluation, but in the meanwhile..you've our permission to speak with Xattorney at the Ohio Legal Rights Service (OLRS). That was a nice moment. Then we signed our agreement to the OT/PT goals (we had them reviewed by our private therapists) and clearly wrote our disagreement to speech language (which only have receptive goals listed....somehow E's supposed to magically acquire expressive goals) and requested expressive goals for our next meeting.
So, we're waiting to talk to the OLRS attorney and will move from there. I'm guessing we have to play the delaying game, but maybe not as we have documentation from our private SLP and ENT (which is on the way) stating E's use of sign as her primary form of communication. Given that and the admission from the staff (which we have on tape....highly recommend recording all IEP meetings), and the fact that without someone to interpret in E's primary form of communication they're denying her access to FAPE (she can't access the curriculum without an interpreter), I'm not sure they have too strong a leg to stand on. Will update as we go along.
Thursday, August 25, 2011
The problem is that she needs language now, not just vocabulary. So in May we asked to have someone proficient in American Sign Language in the room. We were denied with the following excuses:
- Her fine motor wasn't good enough (crap, she does approximate some signs, but what better OT practice than finger spelling the alphabet - which she does)
- She does have expressive or receptive language (duh, that's why we need someone to model it for her)
- What if she's never verbal; how will she communicate in her community? (yes, like people who are deaf or have hearing loss can't function)
- The speech language therapist for the school offered to cut out more pictures from the ASL dictionary to past around the room to help teachers/aides/therapists (I said that was teaching vocabulary, not language and doesn't demonstrate language in a natural way. I didn't expect to have to explain that to a trained professional)
- We were offered to have the teacher of the child with cochlear implants come in for 15 minutes every day to "talk" to E.
There are other issues with the school/process that we're working through, but think they deny to see which families will continue to fight. Given we're exhausted from all the other things in a day, I'm guessing many families don't go through the appeal process because they trust the "experts." I know our E responds to those who are proficient in ASL and know it will help her develop her language and communication even more. And Bob help the district because I'll take them to the mat to fix this no-brainer for her.
Thursday, June 23, 2011
Backstory: We like Legos. M is very creative with her Legos and one of our recent builds was an airplane. After it was built, we named the pilot Steve Kerplansky.
Last night (6/22/11)
M: Mom, can I show you my Lego people?
M: Bringing out her people all arranged and begins naming/explaining them. There's Steve, Steve Kerplansky.
Me: I love Steve Kerplansky.
M: Steve Kerplansky loves you.
Saturday, June 18, 2011
Monday, June 6, 2011 - Driving near Milan, MI
M: Mom, I just saw a sign that said "Don't pick up chipmunks!"
Me: What?! Don't pick up chipmunks?
M: Yes, there was a sign.
Me (looking around and finally noting the prison near the side of thr highway). Did the sign say, "Don't pick up hitchikers?"
M: No, it said chipmunks.
***discussion follows about what are hitchikers, why the sign is posted, prison breaks, and the importance of not hitting chipmunks OR picking up hitchikers ***
June 16, 2011
While rough-housing with me:
M (yelling): Dad! Dad! Come save me, Mom's going to eat me
Me: Why would I eat you? You wouldn't taste very good.
M: I'd taste like bacon.