Friday, September 30, 2011

Dedicated To You

Claudia Carawan is the music teacher at CharterHouse School in Richmond, on the campus of United Methodist Family Services, the wonderful organization that has helped me build my special family.

I love many of her songs, but this one especially made me think of the beautiful Miss Brooke and her incredible mom, Lynnette.

I love you both!

Thursday, September 29, 2011

Buyer Beware

Have you ever had this happen? If so, I would love to know how you handled it.

IEPs are almost always held in the Spring in my school district. The planning is for the next school year. Ronnie's IEP was held in May, and his teacher last year, a teacher for the Deaf, as well as the Chair of the Hearing Impaired department, tried very hard to convince me to move Ronnie from our neighborhood high school to another school where the district was trying to consolidate services for Deaf students. In addition, the teacher said she was also moving to that school.

The other school was not that far away from us, and Ronnie said he wanted to go (although I believe there had been a little coercing before the meeting). And, his signing friends were also moving, I was told. The move was going to make my life just a tad bit harder, but if it was in Ronnie's best interest, I would certainly do it.

So I made the decision that he could move. We hammered out the rest of the IEP - heavy on academics, not so heavy on functional skills because I believe it is my job as his parent to focus on those things.

Fast forward to September.

Ronnie starts at his new school and I find out that the teacher for the Deaf is not going to be at that school, and the Chair of the Department has retired. And I'm not so sure that this is a good placement. But Ronnie says he likes the new school. So far the homework that he brings home is heavy on functional skills and light on academics. And, he is only one of three students in his classroom.

Making a change at this point back to his previous school would be difficult. He is starting to make friends, especially girl friends (!) at the new school, and I'm not sure moving him again so quickly would be a good thing. But something needs to be different.

I'm thinking I need to call an IEP meeting and share these concerns with the school team. What do you think?

Wednesday, September 28, 2011

Tuesday, September 27, 2011

Visualize This

Sometimes I like to visualize in my mind what it must be like to be in a wheelchair like Ronnie or Ashley. Doing so helps me figure out accommodations that can be made to help make their travels a little easier. Today I was attending a business-related conference at a local hotel and decided this would be a good time for a visualization.

Unfortunately, the first leg of my visualization trip was not so good. I had to park in the parking garage for the hotel. I tried to pull into a handicapped parking spot, but the access aisle was being used for storage. See the picture below.

This is not an usual sight though. In the past I've seen piles of dirt, piles of snow, snow moving equipment, and grocery carts piled into the handicapped parking spot and access aisle. The way these concrete things were positioned, it was impossible to open the car door. I pulled out and found another parking spot. A person with a wheelchair may not have been able to do that.

Then my visualization took me up the elevator to the hotel lobby so I could register for the meeting. All that went well. The registration counter was lowered and had I been in a chair, I would have had no problem signing in and picking up my materials.

The next problem came when I tried to move through the hallways of the conference area. There were vendors lining each side of the wide hallway, making it not so wide. Throw in approximately 800 people, and traveling in a chair would have been nearly impossible.

There would have been excuse me after excuse me, tap-tap-tap after tap-tap-tap trying to get people's attention so I could move past. I think I would have just given up at that point, and now I understand better why Ashley and Ronnie can both get so frustrated in crowds.

Finally I found the room I was supposed to be in. It was a large banquet hall filled to capacity with round tables, each seating 8 people. There was hardly room to walk between the tables, much less move in a wheelchair. Had I really been in a chair, I would have had to just wait by the door for the entire presentation.

After the keynote, we were to move to breakout rooms for the next session. Mine was in a room with two aisles of chairs, each having 10 chairs in each row. Again, there was no room to move a chair down the aisles. I would have to park my chair either in the front of the room or the very back of the room. Either would have marked me as 'different' to the crowd.

After that session, it was back to the banquet hall for lunch. I thought I had it figured out this time. I would go in early in my chair, before the room filled with people, and that way I could get to the far side of the room to sit with my co-workers. But I forgot something very important. Had I done that, I would have been trapped in the room until everyone else left at the end of lunch. A trip to the restroom would have been out of the question.

And so the day continued - too many people, not enough room, and doors to heavy to handle while trying to also move a chair. I found myself getting very frustrated and wanting to just yell at someone. Again, I now understand Ashley's and Ronnie's behavior a little better.

But there was one thing that really, really surprised me. How could there be almost 1000 people in one location and not one of them have a physcial disability? Does that seem a little odd to you?

Monday, September 26, 2011

Easy Being Green

This weekend, the kids and I decided to try our hand at making a rain barrel. Our local science museum was having both the rain barrel workshop and a Go Green Garden Festival. Since we are museum members, the only cost involved was $25 for the rain barrel and all the pieces for making it. After checking the prices online for a ready-made rain barrel, we got a real bargain, and the kids learned something in the process!

Here are some photos. Chip, of course, did most of the making of the rain barrel, but Ronnie and Ashley were at the ready in case he needed any help! And of course, at the end, they both provided quality control checking!

The Go Green Garden Festival was packed with lots of good information, and unfortunately green stamps for everyone's hands. Ashley did NOT like the stamps, and did her best to get it off. I guess she took Go Green seriously...

The booth at the festival that intriqued me the most was a Living Roof demonstration. I really, really, really want one....

We could use the water from our new rain barrel to keep it alive!!

Friday, September 23, 2011

No Longer About Basketball or Interpreters

I approached my school district with the following request:

Ronnie started playing wheelchair basketball last school year for a team organized by Sportable. Sportable is a non-profit organization dedicated to providing sports experiences for people with physical disabilities.

Ronnie loves playing on the team and is showing real potential as an athlete. It’s a sports experience that unfortunately he cannot get at school. While he can attend school events such as football games, basketball games, and such, because he is a wheelchair user, he can’t participate on those teams. To my knowledge, the school district does not offer any wheelchair-centered sports teams.

Because he is not afforded the opportunity of school sports teams, I would like to have school district support for his commitment to the Sportable wheelchair team, including interpreter support during practices and games. If HCPS did offer wheelchair sports teams, I’m sure providing an interpreter for those would not be a problem.

The school district mulled it over and then politely declined my request because they contend they do offer sports teams on which he could compete. When they explained the teams to me, I knew exactly what they were talking about.

In my school district, the special education department has organized ‘special’ basketball games where one school team plays another. The teams are made up of all the special education students in each particular school, and Ronnie played on his school team last year. However, he was the only student in a wheelchair. As you can imagine, this is not the level of basketball play Ronnie prefers.

I explained that to the person who contacted me about my request. She said, “Well, if he would like to be one of the managers of our regular football team, we could arrange that.”

I replied, “So if he would like to be the token disabled kid who sits near the bench for your high school football games and you call him a manager, then that would be ok with you?”

She said, “Of course.” (I swear, that really was her response.)

What would your response have been after that...????

Thursday, September 22, 2011

What Do You Think?

Ronnie has a wheelchair basketball tournament coming up in a few weeks. It will be held at one of our local universities, and is sponsored by Sportable, an organization in our area that is committed to providing adaptive sports opportunities for people from age five to age 90.

Ronnie is the only Deaf player on the team. We've spent the last week or so trying to figure out how he will know if the referee blows his whistle, and how the coach can convey play strategy to Ronnie.

I think we have figured out the whistle thing with the help of the women's basketball coach from Gallaudet University. When Ronnie's teammates hear the whistle, they will put their arms in the air thus alerting Ronnie.

But the coaching instructions are a bit more difficult. We have experimented with the coach having a blue tooth headset and communicating via an IPhone dictation app to Ronnie. But, doing it that way is a little cumbersome. The ideal solution would be to have an interpreter.

But interpreters are really expensive.

In the past, we had a volunteer and that worked really well. Unfortunately our volunteer moved away, and I haven't had much luck finding another volunteer. So one of the options we had been exploring was to ask the university where the tournament is being held to provide interpreters for the day.

They declined, saying they felt it was Sportable's responsiblity to provide the interpreters.

Two conflicting opinions have been voiced. One, the interpreting company feels that the university is just as responsible for interpreters as they are for accessible bathrooms, wheelchair ramps, and such. In a very impassioned email on the subject, the head of the interpreting company wrote:

Does this mean that if your child was in a wheelchair they’d put a lock on the handicap-accessible bathroom door? Put gates in front of ramps? Would you have to find a volunteer to carry your child (and wheelchair) into the building? Put a diaper on him (since he wouldn’t be able to get into the bathroom)?

The other opinion says it is indeed Sportable's responsiblity to provide interpreters since they are the ones running the tournament. Unfortunately, Sportable, being a non-profit that has a shoestring budget, cannot afford to do that.

So I am just wondering - whose opinion do you think is correct?

Wednesday, September 21, 2011

Special Exposure Wednesday

Ahhh, young love. One day, a picture in a frame placed just so for viewing from any point in a room....the next day, a crumpled heart on the floor...

Tuesday, September 20, 2011

Dreading The Next - Revisited

I wrote a post last week titled "Dreading the Next." This past Saturday, an article and a video appeared in the New York Times titled "Autistic and Seeking a Place in an Adult World."

Though their disabilities are different, Justin, the subject of the NYT article, and Ashley face similar challenges in the future. And like Justin's parents, my struggles in helping to facilitate a good future for Ashley at times seem overwhelming.

This article does an excellent job of relating those challenges and struggles. It's a long article, very long, but worth every second of your time to read. There is also a video which shares a lot of Justin's story, but not as much as the article itself.

If you are the parent of a soon-to-be-adult with significant disabilities, I don't think you will regret taking some time to read Justin's story....

Autistic and Seeking a Place...

(article and picture courtesy of the New York Times)

Monday, September 19, 2011

Thank You, Armenia!

It was a cool, dreary weekend here but the kids and I found some wonderful food to warm both our bodies and our spirits.

We went to the 53rd annual Armenian Festival!

I'd never been to it, but heard in the news that it was much like our city's annual Greek Festival, which I love but usually don't attend because the crowds are huge and not very wheelchair-friendly. The reporter on the news said that if you liked the Greek Festival that you would like the Armenian Festival also, and that the crowds were nowhere near are large.

So we piled in the car and headed to the Festival.

Parking was a bit of a problem because the festival was being held in the parking lot of the Armenian Church. That left only on-street parking, which is difficult at best when unloading wheelchairs and loading people into them. But we managed and were rewarded with some wonderful food!

I had a pork kebob with rice and pita bread. Ronnie had a chicken kebob with rice and pita bread. Chip had a beef and lamb burger which looked really really yummy, and Ashley wouldn't try anything - until I bought a cheese boreg for her. The boreg was described as Philo with Cheese Filling. It wasn't the normal yellow, gooey cheese she is used to. Rather it was feta cheese with olive oil, parsley, egg yolks and pepper. I loved it but thought she would turn up her nose at it.

I was wrong!!!

And then there were the pastries. Need I say more....

Friday, September 16, 2011

Front Porch Biology - Take 2

I wrote back in 2007 (have I really been blogging that long??)about an impromptu biology lesson with Ashley on our front porch. This week another lesson, this time with Ronnie, happened.

Ashley's school bus had just picked her up, but Ronnie and I were still waiting for his. He noticed two squirrels frolicking in the front yard, and signed to me that they were 'making babies." That took me by surprise even though it shouldn't. He is 16 years old. I signed back, "Yes, they are," and we continued to watch.

Ronnie pointed out that the male squirrel kept biting the female squirrel. He signed, "Fathers shouldn't be mean to mothers." Ummm, I think we weren't just talking about squirrels anymore.

I asked him if his birth father had been mean to his birth mother, and he signed, "Yes." I told him that I was sorry and that he was correct, fathers should never be mean or hurt mothers.

He watched a few minutes longer. I hugged him and told him that I loved him. He signed it back as his bus pulled up to our house....

Thursday, September 15, 2011

The "R" Word

This video has been making the rounds of Facebook and some other blogs, but it is so powerful that I wanted anyone who hasn't seen it to get the chance to see it.

Wednesday, September 14, 2011

Tuesday, September 13, 2011

Dreading The Next

I think I’ve lived in a state of denial the past couple of years when it comes to thinking about Ashley’s post-school life. She is 16 and we do have some time, just a little time, to figure things out, but I am at the point of worrying now.

Research shows that employment for people who are deafblind and multiply disabled is not good. That same research shows most of those people end up just living at home or in a *facility*, unable to find work.

I hope to be around for a while yet, but I do still worry, and worry seems like too mild a word for my emotions on this subject, about what will happen with Ashley when I am no longer around. I don’t believe she will ever be able to live independently, and even if she could acquire those skills, would she be able to find a job to support herself? And, with my experience with *facilities*, I don’t believe there would be anything worse that could happen to her.

The school system is not doing a very good job of preparing Ashley for life after school. Yes, we have functional goals in her IEP, but the school’s investment ends when Ashley leaves school, and sometimes even sooner. There is a one size fits all mentality in the school when working on job skills. “let’s all go wipe down the table in the cafeteria” for example. I have yet to see a real interest in discovering what Ashley prefers to do, what tasks interest her, and what tasks drive her crazy. If her preferences are not factored into the training, it seems to me to be a total waste of time.

In Virginia, we do have a rehab services agency that purports to serve people with disabilities who want to find a job, and training for a job. That agency won’t become involved until the last year of school for the student, and at present, have shut their doors to all because they say they are out of money. It’s too late to wait until the last year of school. And my experience with this particular agency is that they will work with the more mild disabilities, but send them someone with multiple, less common disabilities and they throw up their hands.

So, any of you in a similar situation as mine, what have you done or what are you planning to do for the post-school years for your child with multiple or less common disabilities? Is your child going to stay in school for as long as possible? Have you found private agencies that serve adults with disabilities to be more proactive than government-run agencies? And, at what age did you start working on a plan for your child?

Are you as worried as I am?

Monday, September 12, 2011

We Shall See

Apparently I ruffled some feathers last week with all my calls and emails about school bus schedules. On Friday, I got a call from the head of transportation and one from the director of special ed. The special ed director even offered compensatory services for the time that Ronnie has missed by being at least 30 minutes late for school each morning.

After I arrived home from work, I got a phone call from the second in command of transportation. That gentleman said that beginning Tuesday, Ronnie would have a different bus and a different schedule. The new schedule has him being picked up at 8:17am.

Of course, the first bus had a promised schedule of 8:20 am so I guess I will have to wait and see if the new bus will actually be on time. I sure hope so...


The weekend was difficult with all the 9-11 tributes. I watched hours of shows, almost as much as I watched when the events were originally unfolding. My grief and sadness was just a raw as it was then, and the tears just as plentiful.


When I wasn't watching the 9-11 tributes, I was absorbed by my own little marathon of The Good Wife. I never watched the show when it was on TV, but several months ago, I started watching season one on Netflix. After just a couple of shows, I was hooked. I couldn't wait for season two to come out on DVD, which it did this weekend. Now I just have to get in 16 shows before season three starts this coming Sunday!!

Friday, September 9, 2011

The Clock Is Ticking

It’s the end of the first week back at school, and for the three of my children still in the public school system, almost everything has gone very well. But, the one thing that hasn’t gone well is very very not well.

In my town, high school starts at 8:45 am. The past two years, Ronnie and Ashley went to the same high school and were picked up by the same accessible bus. The bus driver knew my family well, and understood that as a single parent, getting to work on time was important. He changed his route schedule just a bit to pick Ronnie and Ashley up first. That allowed me to get to work on time. Not so this year….

The problems started the Friday before school was scheduled to start. As I always do, I called transportation to verify that I still had the correct bus numbers and schedules. Ronnie moved to a new high school this year, so I was dealing with two bus numbers and schedules.

When I called, the transportation office gave me the bus number and pickup time for Ashley – bus number 1980 and pickup at 8:16 am. That was going to be a problem by preventing me arriving at work by 8:30 am. But, I figured I would let the transportation issues settle in the first week, and then I would make my request for an earlier pickup.

Next, I asked for Ronnie’s bus information. “Ronnie who?”, they said. Even though his IEP denotes special transportation with pickup and drop off at home, there was no record of that need. I tried to reason – I called the school teacher and principal – I got angry – and then I drew a line in the sand. Ronnie would not be at school the first day unless someone picked him up.

Perhaps as retribution for that line in the sand, on Monday (Labor Day) I got a call saying bus 300 would pick him up at 8:20 am. Again, that’s a problem for me getting to work on time, but again, I decided to let things ride for the first week.

Here’s how the first week went:

Tuesday – Ashley picked up at 8:30am, 14 minutes late. Ronnie picked up at 8:55 am, 35 minutes late and 10 minutes past the start of school. Once he arrived at the school, I estimate he was about 30 minutes late for school.

Wednesday – Ashley picked up at 8:25 am, 9 minutes late. Ronnie picked up at 8:50 am, 30 minutes late, and again, late for school.

Thursday – Ashley picked up at 8:25 am, 9 minutes late. Ronnie picked up at 8:45 am, 30 minutes late and again, late for school.

I’ve called and emailed and whined and begged and been professional all the while. The only response I get from transportation is that they are discussing to see if there are any other options.

Well, school district, here’s an option – you are not providing services as outlined in Ronnie’s IEP since he is late getting to school each day. I feel a state Department of Education complaint brewing, and compensatory time building.

Thursday, September 8, 2011

The Beat Within

How about some awesome ASL-translated music for the dreary, rainy day? I think it's just what the doctor ordered!!

Wednesday, September 7, 2011

Special Exposure Wednesday

Being lazy the day before school starts...

Tuesday, September 6, 2011

A New Girl

I'm very interested to find out if Ashley's teacher and other school staff notice a difference in her now that school is back in session.

Ashley and I worked very hard over the summer to reduce and then eliminate two of her medicines, medicines she has been on for over 10 years. The side effects of those medicines include drowsiness, agitation, and a general malaise. I think the difference is pretty astounding, but am interested to see if others notice.

When Ashley met with her neurosurgeon last week, he noticed a difference. He believed she was more aware, more engaging, more in-tune with the world around her, and I agree completely. Of course, that comes with its own set of challenges!

Those teenage behaviors which can wear a mother down are more pronounced now. There is more emotion, more opinion, and yes, more drama. But there is also more understanding, more learning, and more 'presence'.

It is difficult at times but I love it!! Let's see what the school staff thinks :)

Monday, September 5, 2011

Earning the Tee-Shirt

We can now officially wear the "I survived Hurricane Irene" tee-shirt.

After 7 long days and even longer nights, our power was restored, and my life got better. I told you in my last post that I would be back as soon as the temperature inside my house was cooler than outside my house, and by Saturday morning, that was the case. It was then on to tackling the mountain of laundry that had been building all week, and now it is Sunday evening, and all the laundry is done!

The first few days after Irene stopped in for a visit were sort of an adventure. By day four, we were all cranky, hot and ready for life to get back to that which we call normal.

I know we did not have it anywhere near as rough as others. In fact, there are still about 10,000 people in my area who still at the end of day 9 do not have power. And then there is the tragedy of North Carolina's Outer Banks. They weren't wiped off the face of the map, but it was close.

I am very thankful for the generator that we have, even though it did die on day 6. Thankfully the generator repair folks were Johnny on the spot and got it fixed in a couple of hours. And, I am thankful that I had an air-conditioned office to go to each day. It was 8 hours of respite from the heat.

Now, Hurricane Katya is headed our way, but the hopes are that it will turn before it hits the East Coast. I sure hope the forecasters are correct because otherwise, I am packing up and heading far, far away...

Now on to the next challenge of our life - the start of school!!!

Thursday, September 1, 2011

Need a Break

It's been a rough week and it doesn't look to be getting any better for the next few days. Hurricane Irene hit last Saturday and we have been without power since. Our power company now projects our power will be restored late Saturday night.

Four more days.....

I'm exhausted from not sleeping. I'm sick and I think Ashley is also. I'll find out when we go to the doctor this afternoon.

I'm tired of being hot, tired of not being able to do laundry, tired of our routines being tossed about and shaken up. It's not sitting well on any of us.

So, I need a break. I need to not do all my whining here. I need to just go away until it is all better. That will be when my power is back on....

See you again when the temperature inside my house is cooler than the temperature outside....