Calling Me....

I hear the waves calling my name. Sand fingers reach out to tickle my toes. Life slows down and my smile speeds up.

It's summer time...

It's vacation time...

Maybe, just maybe I will come home. But then again, maybe I won't.

This Is So Badly Needed

One Man's Mission to Map More Accessible Cities

Sign Language Ban??

I really, really hope that this child's parents have contacted an attorney. It amazes me that this kind of stuff still goes on. Who is running this school district?

School officials have threatened a hearing-impaired girl with suspension if she uses sign language to talk to her friends on the school bus, the girl's parents say.

Special Exposure Wednesday

Being out of school doesn't mean losing touch with your signing friends.  It just means you have to move to the video phone!  Hi Mark!!

This Doesn't Surprise Me

Anne Belanger was heartbroken when she discovered her son — who uses a wheelchair — had been placed off to the side in his Grade 2 class photo.

Check out Ms. Belanger's story here, and then go read one of my very early blog entries.  It's obvious that in the last 8-10 years, and I'm sure longer than that, nothing has changed.  Oh, we might see little victories here and there for our children with disabilties, but the overall attitudes are still the same.  Very sad...

Yet Again

Life changes yet again today.  I'm not ready for it...

When Ashley moved to our state's Developmental Disabilities Medicaid Waiver, she became eligible for many services, one of which is a personal care aide through an agency.  In the past, Ashley has had what is called a 'consumer directed' aide, a person that I would seek out and hire.  But now, we are relying on an agency to do the seeking and hiring.

Several other families referred me to a specific agency, saying they were really good and worked hard to find an aide that was the best match for your family.  I want to believe that, but the jury is still out in my opinion.

In the past several weeks, I've met five aide candidates, and three others cancelled their appointments at the last minute.  Of the five, I'm only really impressed by one, and that person is only available three afternoons this week - and that's it.  Which leads me to the second issue that has me worrying...

I *think* we have two aides that will work this week - I won't really know until they show up - and then the agency is going to keep looking for others because I still don't have all the hours covered.  My biggest concern is the number of people who will be coming in and out of the house to work with Ashley, none of which will be around long enough to build up the trust and type of relationship Ashley needs and deserves.

I'm still hopeful that the agency will find the exact right person, and maybe one more to cover one evening (so I can go to Ronnie's sporting events) and a few hours on the weekend so I can get some errands done.  That would be my ideal situation, and one to which  Ashley would best adapt.

For a person with deafblindness, building a trusting relationship with someone, especially someone who is going to be helping with the more intimate parts of her daily routine, is paramount.  But if we are constantly changing aides, I am worried that won't happen.  Please keep Ashley in your thoughts and prayers, hoping she will find the right person (people) to help her while also making her comfortable with their presence.

Be My Brother

This is one of the films from the Sprout Touring Film Festival.  It is well worth nine minutes of your day, I promise!

A young man's charm and charisma challenges the prejudices of a stranger at a bus stop.

Be My Brother stars aspiring actor Gerard O'Dwyer as Richard, a young man with Down syndrome. His acting practice while waiting for the bus is meant to entertain himself and ultimately the others at the bus stop. When he impacts on the stranger’s world, he also impacts on the heart and mind of someone else close by.

Be My Brother won the top prize in Australia's TropFest Film Festival in 2009.

Special Exposure Wednesday

Whenever we are listening to the 60's channel on the car radio and the song "Build Me Up, Buttercup" comes on, Ronnie collapses into a fit a giggles because of what is displayed on the radio screen...

A Retrospective

Ahh, another year of school draws to a close. It's been a very good year for both Ronnie and Ashley.

Ronnie did a 5 month job internship and his employers raved about the quality of his work. His grades this year have been fine, and he is very well liked and respected by his peers. His athletic abilities really make him a standout at school, and both disabled and non-disabled peers love to watch him play basketball. If I could change anything about school it would be to decrease the drama which seems to follow one girl around, a girl that Ronnie has always been convinced he madly loves. One of the many reasons I am looking forward to summer break is that this particular girl won't be as omnipresent in his life.

Ashley, as has always been the case in high school, has made great strides this year. From learning to sign her name, to participating in a vocational activity that she loves (gardening), to mastering a bit more Braille, she has risen to every challenge that has been presented to her. I never thought I would say these words, but every since starting high school, I look forward to the school year and I know Ashley does also. Having a champion (her teacher) has made all the difference for Ash, and she continues to learn and grow.

So what does the summer hold?

Ashley will attend ESY (Extended School Year) as she has in the past. Most years, that has not been a positive experience. I keep hoping that it will turn into doing the things we really need it do, i.e. helping Ashley maintain her skills, but it hasn't happened yet. Last year, she was injured so much during ESY services that I really had to pause and decide if her going again this year was something I wanted. I did agree because we put some more services in place that will bring some of her specialists to the summer setting, and I think that may help.

Ronnie will participate in his usual summer sports activities - a summer basketball league, lacrosse, and maybe softball. Most of those are in the evenings however which leaves his days free. And free days can easily turn into sitting in front of the video game console for hours on end. I really need to come up with something to fill his days, all the while encouraging more independence. He says he really wants to live in an apartment by himself, but unless he starts to manage his activities of daily living a little better, and that includes his health needs, I don't see that ever happening.

We will, of course, take a few short vacations as a family and will do some day trips around the state this summer. We are not a family that stays put for very long!

I hope your school year experiences were not too negative, but if they were, never give up, never stop hoping and believing that things can get better. If I had had the means to pull Ashley out of school when she was in the third grade, and believe me I really wanted to, she would have missed some of the best years of her life in high school. So keep fighting for what your child needs and deserves. It is exhausting, but worth every second!

Reading Glasses

Given all the advances in technology, this is a wondrous time in which to live!  Check out these 'reading glasses'....

Device From Israeli Start-Up Gives the Visually Impaired a Way to Read

Hear Their Stories

Stop whatever you are doing and watch this video. Watch it now. Then before you get back to your busy life, figure out what you can do to make a difference. We MUST make a difference...

The Government and Pinterest

Our state's Governor has issued Executive Order 55 which challenges the Commonwealth of Virginia to increase the employment of Virginians with disabilities. A new Pinterest page was developed in support of this executive order and highlights assistive technologies that can help employers translate that challenge into action. View it here. There are some really interesting devices...

(This is about as close as I will ever get to discussing politics on this blog!)

Special Exposure Wednesday

My mouth is watering just knowing that soon we will have fresh veggies from our garden!  Tomatoes, cucumbers, yellow squash and zucchini - yumm!

Feels Like Backwards

I started Ashley's tube feedings of fruits and vegetables last Friday.  Like I mentioned then, Ashley's doctor wanted me to do that because she didn't feel Ashley was taking in enough fruits and veggies by mouth.  And she's right, Ashley is not.  The most I can get her to eat is applesauce and raw spinach.  So I bought a bunch a fresh produce and started blending away.

Over the weekend, Ashley has had a mixture of sweet potatoes and mixed veggies, an apple/carrot/orange concoction, and a peach/pineapple/yogurt mix.  She is tolerating them well, and doesn't seem to mind the extra tubefeeding step before her meals.  I wish I could say the same for me...

I feel like we have taken a step backwards. 

When Ashley was much younger, she attended the feeding program at our local children's hospital.  It is a very intense in-patient, 6 week program, and that was followed by years,yes years, of outpatient therapy.  Ashley went from a totally tube fed child to one that would eat mac and cheese, mashed potatoes, spinach, chick nuggets, soup, and few other fairly soft foods.  She's never much progressed past that though, so the tubefeeding of fruits and veggies makes sense.  but I'm still having a tough time accepting it.

I think I need a heart-to-heart conversation with my friend, Lynnette.  Lynnette's daughter, Brooke, has had a lot of changes in her young life, changes that would bring most adults instantly to their knees.  But Lynnette moves forward by always saying, "Well, this is just our new normal."

I so wish I were as wise as she...

Qualification Based on What She Can't Do

I've shared with you before about how things didn't get good for Ashley in school until she reached high school.  Before then, each IEP meeting brought a long list of things she couldn't do.  But with the amazing staff at high school, and what I believe might be an attitude shift with my school district, IEP meetings now are a celebration of Ashley's accomplishments.  And, when there are things with which she needs help, the approach is to find the right supports so she can continue with her lists of accomplishments. 

Unfortunately though, we have not left behind those meetings where deficits are on the agenda.

Each year Ashley has a meeting to develop a 'Level of Functioning' (absolutely hate that term) for her continued qualification for a Medicaid waiver.  It's a meeting that reminds me so much of her elementary school IEP meetings that it brings a sense of deja vu.

In these level of functioning meetings, we must go through pages and pages of tasks and answer on a scale of 1-5 (with 5 being total care) how much assistance Ashley needs.  If Ashley doesn't have a certain number of 4's and 5's, she will not continue to qualify for the Medicaid waiver, and trust me, we really, really need the services provided by the waiver.

I just hate that we have to go back to focusing on the negative rather than the positive.  I hate that her continued right to stay out of an institution is judged by someone (or some group of someones) who sit around and discuss whether she can bathe herself, whether she wears Depends, and whether or not she is aggressive towards herself or others.

I understand that there is a lot of abuse of Medicaid resources, and that meetings such as these are necessary to weed out that abuse, but I always leave depressed.  Yes, my beautiful daughter has a whole list of things she can't do or things she needs a lot of help with.  Yes, those things will more than likely continue for the rest of her life.  But could we throw in just a few positives during the meeting? She is really so much more than those 8 pages of failed tasks....