Halloween Hoot

What I've Been Doing

Reading:

Generation X Doesn't Want to Hear It


Open Letter to that 53% Guy

Listening:
PlanetMoney Podcast

The Bugle Podcast (warning, contains lots of swearing)

Watching:


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."

Awareness

October is Down Syndrome Awareness Month.

It's also:

Eye Injury Prevention Month
www.geteyesmart.org/eyesmart/injuries/index.cfm 

Home Eye Safety Month
www.preventblindness.org 

National Breast Cancer Awareness Month
www.nbcam.org 

National Disability Employment Awareness Month
www.dol.gov/odep

National Medical Librarians Month
www.mlanet.org/resources/nml-month/index.html 

National Physical Therapy Month
www.moveforwardpt.com  

Spina Bifida Awareness Month
http://www.facebook.com/spina.bifida.learn

Stop America's Violence Everywhere (SAVE) Today
www.amaalliance.org 

Sudden Infant Death Syndrome Awareness Month
www.firstcandle.org  

Which seems like a lot to get behind in one short month.  This doesn't include the weekly observances or daily observances, such as Mental Health, Walk to School, Stuttering, Latino, World Food, etc. And when I look at the list, I'm for preventing/improving outcomes for all of these, even the juggernaut of Breast Cancer (see The Big Business of Breast Cancer for an interesting look at it).

The important thing about all these days no matter how random they may seem is that there's usually a person who has had their life changed through an eye injury, stuttering, breast cancer, a diagnosis of down syndrome, etc.  I've seen Plato's quote "Be Kind for Everyone You Meet is Fighting a Hard Battle" in various places lately, and this list of observances is a good reminder of how true it is.

ButterflyHouse

It was a parent involvement day at preschool.  It was also one of the first outings that we had by ourselves that was for fun.  E. had a good time, I think. So did mommy.

Firsts

This past weekend we went to our first Buddy Walk. Just E & I walked as Big Daddy and M had a soccer game. They joined us later for the post walk entertainment (more on that in a minute). I haven't been very involved with the local Down Syndrome group and worry that I'm missing out on some valuable input or information. Or just finding a network of people. But then I go to a mom's night out and don't really care for the other women there and don't readily connect with some of them, so don't go back.

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.

Silly Pizza Song w/Rachel Coleman (plus some)

31 for 21

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.

First Day of School

The Update

So...still no ASL interpreter for E. We met Friday (8/26) with the District Director, Asst. Director, Principal, Teacher (we love her), the SLP (Speech Language Pathologists for those not in the know :-)). Of course they started out with...we think we're meeting her needs. To which I replied, if you don't have someone in the room who can interpret her and who can interpret classroom lessons into a language that E can use back, then no you're not. After much back and forth in which the Teacher and SLP admitted that they don't sign 100% of the time, do not know her vocabulary (despite us giving them a list last year that they haven't mastered), that she only really signs to them and doesn't verbalize....the district offered to have the situation evaluated. I asked for what and they made noises like they really want to make sure that the teachers really aren't meeting E.'s needs, but what they really want to know is whether E really signs.

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.

Gearing Up

Tomorrow, Big Daddy & I meet with IEP team. In May, we didn't sign the IEP because it was singularly lacking in the necessary accommodations to fit the Little Peep, specifically her language and communication needs. Little Peep signs. A lot. Like knows all the signs from the Signing Time series (yes, Baby Signing Time, Series 1 & 2, Sing & Sign, the Practice Time). We've moved on to others even though they're not as good.

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.
  

We've spoken to other therapists, our private therapists, language people, advocates, and others and we're working on going through the process to get her what she needs. It's just crap that most of the push back and (ignorant) excuses came from the director of the program, who didn't understand that if 33% of E's signs are being missed, it's their fault.

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.

I am loved

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?

Me:  Sure

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.

Recent Conversations

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.

Invention

This is what happens when you don't let kids watch tv. The grow up to imagine all sorts of things. The Cosy Coupe is really a horese named Sparkey and the stretch tri-stroll extends the life of the Pooh bike. It's even better when both girls are in the tri-stroll.

Me & Bunny

This is one of the best pictures of us.

What Its Like In My House Today

Sally Jensen, Kid Lawyer (not a lawyer for kids, a kid who is a lawyer)

Sporty Spice & Super Fly

Me & The Smoochies

The Week in Pictures

My Valentines