Special Exposure Wednesday

The boy's growing up...and up....and up! Ashley is even starting to like him more since he is getting bigger!

Things They Say

First, I apologize for the language in the title of this video. But, the content is so very true. I especially like the one, "Oh, it's totally accessible. There's only one step."

What's The Answer?

I was intially very excited when Ashley came home with a packet of information from our state agency, the Department for the Blind and Vision Impaired. It was an invitation for Ashley to attend a 4 week summer program called LIFE. LIFE stands for Learning Independence, Feeling Empowered.

The brochure said the program was to help students who are blind make the transition from high school to work or futher education. Experience would be provided in how to obtain and keep employment, how to navigate the world as a blind person, and provide opportunities for socialization and group interaction. Sounds great, eh?

Well it did until I started reading the list of qualifications. The one that concerned me the most stated that a student should..."be able to perform self-care activities with minimal supervision."

Ashley is deafblind, not just blind. She has medical issues, specifically seizures which can occur anytime day or night. Because of that, she must have someone very close by at all times. And, she must be monitored at night for seizures. The LIFE program would not provide that kind of support.

This is an issue that I have also faced with Ronnie. There do not seem to be programs that support people, especially young people, who have both a sensory disability and a physical disability/medical issues.

I have never been successful finding a camp for Ronnie. I can find Deaf camps and they aren't accessible for wheelchairs. I can find accessible camps and they can't provide a fulltime interpreter. So he has never gone to camp.

Now I am facing the same thing with Ashley. If she were just blind, she would be welcomed at project LIFE. But because she has significan medical issues which must be attended to, she cannot.

What's the answer...?

Brilliant!

One of the most difficult tasks that faces me as a single parent of children with severe disabilities is grocery shopping. I either have to push a grocery cart and a wheelchair at the same time, and trust me, I'm not very handy with that, or I have to find someone to stay at home with my children while I go to the store. But I stumbled across Carolinescart.com and immediately saw the solution to my shopping dilemma!

Caroline’s Cart is a shopping cart created for special needs children. It provides parents and caregivers a viable option to transport a child through a store while grocery shopping, without simultaneously having to maneuver a wheelchair and a traditional grocery cart. Check out this video:

Missing Mr. Ralph

While my two oldest boys, Chip and Corey, were in high school, they had the same bus and same bus driver for all four years. The bus was on time 99% of the time, both for the pickup and dropoff in the afternoon.

For my two youngest children, Ashley and Ronnie, they are lucky if they have only four different bus drivers and busses each school year. There is no consistency from year to year, often from month to month, and that makes it really difficult for both the drivers and aides who need to know my children and the effect of their disabilities, as well as for my children, both of whom do best with a consistent routine. And having the bus arrive on time??? Almost never.

But I finally got lucky with Ashley’s transportation last November. After complaining about the greatly inconsistent schedules of her assigned bus, schedule problems which kept me from ever getting to work on time, Ashley was assigned a new bus and lo and behold, it was a bus driver that she knew!

Mr. Ralph was Ashley’s driver last year for some of the year. He understands her, and often comes up with great ideas on how to make the ride to school less stressful for her. He is always on time which means I make it to work on time. So everything was going great…..until Tuesday of this week.

Twenty five minutes after the allotted pickup time, Ashley’s bus finally shows up with a different driver. As Ashley starts back to her seat, I begin asking the driver to at least radio his dispatcher if he is going to be that late in the future and the dispatcher can call me. Tuesday morning we waiting outside in the sub-freezing temperatures for 30 minutes. The driver immediately went into defensive mode saying he was just a substitute driver. I asked again for a call to the dispatcher in the future, and he just rolled his eyes and turned away.

Wednesday morning the bus was only 10 minutes late, and yet another new driver was in charge. At least she said that she had radioed dispatch, but dispatch never called me. The driver seemed nice enough, but I asked when Mr. Ralph would be back. She said he wasn’t coming back because he had been transferred to another bus.

Deep and heavy sigh…..

Of course, when things are working well, let’s just mix them up again. That seems to be my school district’s philosophy. I completely understand that running transportation for a school district as large as mine is not an easy job. But it is a job that I assume the folks in the department are trained to do. Does it really have to be as difficult as it seems to be?

And why is it always the special education students who have to put up with the most changes? Special education students who do best when life is predictable and routine? Why can’t the bus transportation for my children receiving special education students be as good as it is for regular education students? Maybe, School District, you should try switching the managers of those two departments and see if it makes a difference….

Special Exposure Wednesday

Every year in late winter, I cut some branches from my forsythia bushes and bring them indoors. For a week or so they look like just dead branches stuck in a vase. But once they start to bloom, I get the first taste of Spring long before Spring even comes knocking at the door!

Pass The Painkillers Please

I've only had a migraine maybe half a dozen times in my life, but boy when I do....Monday was one of those days. And unfortunately for me, it was also a day that schools were closed.

As most parents of children with severe disabilities know, life doesn't get put on hold just because we get sick. I've often wondered which was harder - (1) when my children are sick, (2) when I am sick, or (3) when we all are sick. And the answer, at least for me is (2), when I am sick. The kids are still their normal unique, needy selves but my reserves are pretty much depleted.

So I took a ton of ibuprofen,which I am not supposed to do because I am allergic to it, but it is the only thing that will even begin to dull the migraine pain. The headaches have been so infrequent that going to a doctor to get prescription meds seems like overkill. Fortunately the ibuprofen helped a bit, and once the kids were in bed and tended to, I headed to bed myself...

So how about you? What are your strategies for getting through the sick times and still taking care of your children's needs?

First Snow!

We had the first snow of the season yesterday. I honestly thought that with this very warm winter we have had in Virginia that snow was just not going to happen. But, we got about 3.5 inches and it was beautiful. Of course, just two days from now the temperature is forecast to be 70 degrees!!

So, I'm going to pretend this is my jeep and that I am driving through all this snow:

TGIF!

Someone in this family is NOT a morning person! Happy Friday, everyone!

Pursuing Dreams

This video could word for word be about my son Ronnie. Well, if you substitute wheelchairs for legs! I have heard the same words from Ronnie and his wheelchair basketball teammates. While I believe schools for the Deaf can provide a good education and experience, I also believe that a full life will not be lived in the Deaf community. The Deaf community indeed has its role in the life of anyone who is Deaf, but the rest of the world doesn't stop and doesn't go away. True success, in my opinion, comes in being able to navigate both worlds.

Special Exposure Wednesday

I remember when Corey wasn't as tall as this gun is long....:(

Valentines for Special Needs Parents

Happy Valentine's Day

Now this is what Valentine's Day is really all about!

Be sure to check out the slideshow link on the right side of the page.

Singing With Their Hands

Last Friday, the New York Times published an article called "Singing With Their Hands" which chronicles the growth of ASL music videos. I've posted several before, all from the Deaf Performers Network.

“Searches for ‘ASL’ over the past few months are the highest we’ve seen them,” said Kevin Allocca, the YouTube trends manager. “And 40 percent of all videos tagged ‘sign language’ on YouTube were posted in just the past year.”

One of my favorites is by Sean Berdy, the actor from the TV show Switched at Birth. He does a sign rendition of Enrique Iglesias’s “Hero.”



One of the more prolific posters of sign videos is Michael Chase DiMartino. His YouTube Channel, called Mr. Chase's Sign Channel, is full of fun music like:



Check out some of these - it's like Karaoke for the Deaf!!

Things I Don't Understand

So, can someone tell me exactly what an "educational interpreter' is supposed to do? I think I heard somewhere that there are slightly different than regular interpreters, but in what way?

I'm not real comfortable with the way things are going with Ronnie's educationl interpreter. I don't think the interpreter is supposed to act as a counselor, or suggest courses of action, or even discuss things that aren't related to the school day. But Ronnie's interpreter does.

It makes me uncomfortable. If doing those things is outside the ethical interpreter mode of operation, it makes me wonder what else the interpreter might do?

But then again I could be way off base since I really don't understand exactly what the educational interpreter is supposed to do. Can anyone help?

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One more thing I don't understand about school - why does my child with severe disabilities bring home a course selection sheet that lists all the classes she CAN'T take? What is the point? Is it to make me sad? If so, it'w working...

Miss Deaf America Snubbed

I searched and searched the wide web for a video of Miss Deaf America signing America The Beautiful at last Sunday's Super Bowl. I know she was there - well, I assume she really was there - but I don't know for sure because she was never on camera - or even anywhere near Kelly Clarkson while she sang the same song.

Rachel Mazique, the 2011 Miss Deaf America, had this to say about the snub:

“I truly hope that this becomes a teachable moment for everyone involved, and that American Sign Language renditions of these iconic songs are broadcast in future Super Bowls rather than being a token gesture.”

A group of her supporters are asking that NBC grant her an interview on the Today Show, and have started a petition in support of that request. There are already over 5000 signatures. If you would like to add your name, here is the link.

And apparently this same thing happened last year. Let's make sure that next year is different...

Your Order Please?

Being the parent of a child with special needs prepares us for many 'real (paying)' jobs, if only we could convince an employer and if only some of those parents had time for a 'real (paying)' job.

We have so many skills that would easily transfer to the working world. We:

• have a ton of medical knowledge


• know how to negotiate and get our points across


• know how to sell an idea and make others think it was their idea


• know how to make something out of nothing or very little - crafts, meals, educational tools, etc.


• can survive on very little sleep. Hospital interns have nothing on us in that regard.


• know how to find resources from the most unlikely of places


• understand legal systems and how to work within a government bureaucracy


• are persistent and never give up


• are loyal and caring and strong


• show up for work regardless of the weather or our state of wellness


• etc. I'm sure you could add many more things to this list (and please do)

But my current favorite skill which I know I could easily turn into a real (paying) job is supply clerk.

I maintain a complicated inventory of supplies - catheters, G-tubes, syringes, depends, and medicine out the ying-yang - prescription and over the counter. I always know when it is time to reorder items, and of course they all have their own reorder schedule even though I try very hard to get things synced up. I dispense items as needed (which is constantly), and share/trade items as appropriate. I have a stockpile of wipes, tissues, laundry detergent, 4 types of shampoo, conditioner, body wash, soap, toilet tissue (we seem to use a ton of this), and all the special foods/drinks that my children need. I schedule reordering (trips to the store) each week so no one goes without, and my friends often ask to borrow something because they know I am such a good supply clerk!

I would estimate at least 45 minutes EACH DAY is spent opening delivery boxes, checking supplies, replenishing supplies, recycling and taking out trash.

What about you? How long do your supply clerk duties take every day? And if you have multiple children with special needs, did you see your workload grow exponentially with each added child? I did!

Special Exposure Wednesday

I'm thinking maybe we should have named this monster dog Clifford rather than Cooper....

Entertaining????!!!

Why are we failing as a society, a society in which a child in special education is set on fire by regular education students at his/her school?

New Port Richey Student Set On Fire

How can a middle school student, and 11 year old student, ever think that is ok? What are we missing? What in society even plants such an idea into a child's brain?

The article states that the two students who set the other child on fire have disciplary records at the school. What has been done in the past? How were those displinary issues handled? Where along the way did the two students think it would be 'entertaining' to set another child on fire, a child who may not have seen the danger in the situation?

These are all rhetorical questions, but this whole thing just makes me ill...

The Don't-Care-Van

And I thought school transportation was bad.....

This past Saturday I hosted a get-together of professionals who are interested in advocating for people with disabilities, college graduate students, mentor families, and self-advocates. One of the self-advocates was a woman, Barbara, who appeared to be around 30 years old. She used a hi-tech power wheelchair and a communication board. She typed out what she wanted to say by touching a straw held in her mouth to the keyboard of the communication device. She moved her chair independently though slowly since she had only the slightest movement in one of her hands. She was funny and beautiful and had a wicked sense of humor.

She traveled to my house using a van service in our area called Care-Van. It is operated by our local bus transportation company, and its only purpose is to transport people with disabilities.

Over the years I have heard many nightmare stories about the unreliable service provided by Care-Van, and I had the chance to experience that first hand with Barbara. First, they had a tough time, so they said, finding my house to drop Barbara off. My house is probably one of the easiest houses to find in my city - truly. It is one turn off a main road, and it is easy to figure out which house in the neighborhood is mine because of the prominent wheelchair ramp. But Care-Van claimed they had a tough time finding it. I wonder if they have heard of GPS devices...

Care-Van finally did find my house, and Barbara joined in the fun. When she was dropped off, Barbara had already made arrangements to be picked up three hours later. Sounds simple, right? Apparently not.

Care-Van showed up - same driver - same wheelchair van. Barbara had already started down our ramp heading to the van when the driver appeared to tell her that he couldn't take her because his van was already full. He said he would be back in about an hour....

So Barbara had to work very hard to turn her chair around, get back in the house, and wait another hour. I personally enjoyed the extra time with Barbara, but I could tell she was anxious to get home. She explained that she had booked these travel arrangements well in advance, but that she wasn't surprised because this always happened. She couldn't begin to count the number of times she had been late for work because of Care-Van. And I have heard that from many others.

So, you've got someone, many someones, with disabilities who have a tough time finding employment in the first place, and then because a transportation company can't seem to understand scheduling and travel, the person is at risk of losing their job. And even worse than that to me is that someone like Barbara, who works very hard to have control over things in her life, things which are extremely difficult at best, and she is at the mercy of a transportation provider.

I'll say the same thing I've said about school transportation services - I know it must be a complicated task to schedule the transportation, BUT THIS IS THEIR JOB. It's what they are in business to do. And right now, they are doing a really crappy job....

Really George?

Here we go again - yet another movie and movie star who feels it necessary to make a joke at the expense of people with intellectual disabilities. Yep, it's the 'R' word AGAIN, this time in an Oscar nominated movie.

The movie is The Descendents,and the movie star is George Clooney. I know he has enough clout in the industry to demand a change in the script. Yet he didn't, so in my book that means he agreed with using the R word as a punch line.

Here is the exact dialogue exchange as taken from the book on which the movie is based, and the movie lines are almost exactly the same:

"Stop it," I yell. "Stop touching each other."

"Whoa," Sid says. "Maybe that's why your wife cheated on you if you're so against touching."

I snap my head around to face him. "Do you get hit a lot?"

He shrugs, "I've had my share."

I face my daughter, "You know you're dating a complete retard. You know that, don't you?"

"My brother's retarded, man." Sid says. "Don't use it in a derogatory way."

"Oh." I don't say anything more hoping he'll interpret my silence as an apology.

"Psych," he says and now kicks the back of my seat. "I don't have a retarded brother!" His little trick is giving him a great amount of amusement. "Speaking of the retarded," he says, "do you ever feel bad for wishing a retarded person or an old person or a disabled person would hurry up? Sometimes I wait for them to cross the street and I'm like, 'Come on already!' but then I feel bad.

So needless to say, I will not be seeing this movie and I will be encouraging others to not see it. I'm sure it has already made a gazillion dollars and may probably win an Oscar, but it won't make my $7.50, and neither will any future movie in which Mr. Clooney participates.

I'm really, really tired of this.

In The News

Never ever doubt the power of social media and the press! Transplant for Mia now a possibility!

Do you have a child with a shunt? Depending on the particular type of shunt, using an iPad2 might present some problems. Apple iPad2 and Shunts

In the past two years, Ronald Walden has filed 18 lawsuits related to access for a person in a wheelchair just in the medium-sized city in which he lives. While I too experience the problems he mentions on almost a daily basis, I have to question whether lawsuits are the correct response to the problems. I have found that talking to a venue's owner, or mediation, or even just withdrawing patronage can have an impact for change also. There will always be the aggregious cases, or the cases where a proprietor is unwilling to even discuss the matter, but filing a lawsuit for everything??? To me it's a little like the story of the boy who cried wolf. Eventually the boy was ignored... Disability Access Lawsuits on the Rise

Leticia Velasquez is the editor of a new book, A Special Mother Is Born, which gathers the inspiring testimonies of parents who were given bad prenatal diagnoses, or found themselves unexpectedly the parents of a child with special needs. Read an interview with Ms. Velasquez here. (Special note - I have never liked the term 'special' mother/parent/person used to describe parents who have children with disabilities. It's just a personal thing for me. I don't feel special. What I do feel is very, very blessed.)

Special Exposure Wednesday

Corey made it through Army basic training! Of course, I always knew that he would, and that he would be one of the best in his group! Now it's on to Georgia for an 18 week training....and then, I don't want to think about that right now....

I'm very proud of you, Corey!