Thursday, December 29, 2011

The Bright White Light

Ben died on Christmas night. Prior to his death, he asked, "Do you believe in angels or God?" If not, your mind may be changed after viewing this video:

Sick teen's video goes viral after his death.

Tuesday, December 27, 2011

Can You Hear Me Now? NO!

One of the activities my family has always enjoyed around the holidays is going to movies. It's the time of year that new movies are released, especially family movies. But because we live in an area that ignores the needs, wants and rights of people who are deaf or hearing-impaired, we no longer get to enjoy one of our favorite activities.

Two theaters in our area play ONE captioned movie at a time. One of those theaters is about 15 miles away and the other is about 25 miles away. During this winter break from school, the theaters are not playing captioned family movies. And, both theaters play the same movie.

So, we are left with the choice of taking Ashley and Ronnie to a movie that is not captioned or not going to the movies at all. We usually always choose the latter option.

Come on, Regal Theaters, you have the monopoly in our area. Would it be so difficult to show a couple of movies on more than two screens?

Saturday, December 24, 2011

All Is Revealed!

Here he is - the newest addition to the family! COOPER! Cooper is a yellow lab who is seven weeks old. He is also just about the cutest thing ever!

I hope you all have a very Merry Christmas!!!

Friday, December 23, 2011

Holiday Outings

Ashley loves the carwash. Don't tell me I don't know how to show my children a good time!

TODAY'S CLUE: Two of you have guessed correctly! All will be revealed with pictures tomorrow!

Thursday, December 22, 2011

Orange? Blue? Hot Pink?

Are there really other people in the world besides Ashley who would want an orange Christmas tree????

TODAY'S CLUE: One last clue and then all will be revealed on Saturday!

I think I've bought way too many toys!

Wednesday, December 21, 2011

On To The Moon!

Tuesday we visited our local science museum. We have a family membership primarily because it gets up free admission to our museum but also to hundreds of others across the country. We used it a lot last summer around our state. It really is the best $100 I have ever spent!

Here is my astronaut in training, Miss Ashley! Look closely and you can see her head in the helmet...

TODAY'S CLUE: I had no idea how much daycare cost until I visited one today for a tour!

(The guesses that have come in are good, but not quite correct yet...keep trying!)

Tuesday, December 20, 2011

Channeling Jack Kerouac

Recently Ashley has been in a 'black' mood - wanting to wear black all the time. I have no idea why, but at bedtime last night, she was looking like a beatnik, interpretive dancer stuck on Sesame Street!

TODAY'S CLUE - We'll start with a small room but it will be easy to expand over time.

(If you have no idea what this clue thing is about, check Monday's post.)

Monday, December 19, 2011

Spider Man

Today begins the first day of my two week vacation! TWO WEEKS! The last time I had two weeks off from work was for maternity leave for my oldest son, Chip. Chip is now 21 years old!

My posting schedule may be a little off these two weeks, but I am going to try to document these historic two weeks through pictures. And, I have a major announcement coming later this week!

First - the picture. Ronnie and some members of his wheelchair basketball team went rock climbing this past Saturday. It was so exciting to see the boys and one girl pull themselves up with arm strength only. They did this last year, but this year they were much faster! And then secondly - I will provide a clue about my announcement at the end of each post. If you think you know what the announcement is, email me. But, your guesses have to be very specific!

TODAY'S CLUE - I first met Ashley in December...Jessica and Corey joined our family in December....and I first heard about Ronnie in December.

Friday, December 16, 2011

Just and Loving?

It’s tough to ‘keep the faith’ when one experiences a lot of negative things in their life. And often it seems like the negative things just keep piling up and up. You know, the thought that a lot, if not most, believers have at some point in their lives – ‘Why does God let bad things happen to good people?’

When I have had those moments, I tell myself to just trust that all that is happening is part of God’s plan and to just believe that there is a purpose to the turmoil. But, it gets very hard to remember and believe that when the bad things happen to an innocent child, and especially hard when bad things continue to happen over and over again through no action of that child.

For instance, children like mine and others with severe disabilities did not ask to be born they way they were. It was through the actions of their birth parents – drinking, drugs, no prenatal care, etc. – that their lives were determined. Innocent children who had no say in their future…

I can perhaps accept that at some spiritual level by going back to having faith when it seems God has a plan. What I can’t accept is when bad things continue to happen to these innocent children. Wasn’t it enough they were born with their disabilities – why must they be afflicted with other negative things beyond their control?

For example, these vulnerable children are subject to stares, bullying, exclusion and a host of other actions by people who ridicule them or think of them as less than ‘normal’. The parents of the children must battle every step of the way to ensure their children receive appropriate educations when teachers often ignore or exclude them, or just don’t believe they have any ability to learn. Or, there are the professionals (and that term is used loosely) who insist you prove over and over that your child really does have a disability, disabilities like deafness or blindness that seem nothing if not obvious. These children have to endure bus drivers and aides who treat them like animals, people who equate a physical disability with a decreased capacity to learn and understand, and neighbors and sometimes extended family members who act as if that child has something contagious. People speak about these children, not to them. They support them without befriending them. They suggest interventions and treatments to ‘cure’ them or make them more ‘normal’. They are very often treated less like human beings and more like creatures to be contained, trained, and locked away.

This is where my faith begins to crumble. It’s like kicking someone when they are down. These children bear enough of a burden from their disabilities – why must they further bear the burden of cruel or unenlightened people? Why does a merciful loving God allow that to happen, and especially allow it to happen over and over again?

These thoughts have invaded my mind even more now that Christmas and an increased spiritual environment are upon us. I don’t have any answers and I wish I did. I wish my faith was enough to relax my soul, but it’s not. I wish, no, dream, for a blast of positive into the lives of children who have lived primarily in the negative.

I want to believe in a God that can turn all this around – I really do.

Thursday, December 15, 2011

Someone to Pinky Swear With

I have such fond memories of growing up and spending endless hours with my friends. We would play with our Barbie dolls, or build forts in the swamp behind our houses, or ride our bikes and skate. As we became teenagers, we would giggle about boys, try out makeup, and pull all the clothes out of our closets trying to find the exact right outfit for the school dance. My childhood was defined by those friendships, and by the passages through time that we shared.

But my beautiful daughter, Ashley, has never had and probably never will have similar experiences.

I have tried to encourage friendships between Ashley and her non-disabled peers, and often even other disabled peers. But those friendships never happen. A very few times, I would find a peer with a heart that wanted and tried to be a friend, but it never lasted. The lure of typical peers and typical activities would always win over communication difficulties, medical difficulties, and often limited responses from Ashley.

Ashley has never been invited to a birthday party or a sleepover. The only times she goes shopping at the mall is if we, her family, take her. She doesn’t talk or text on a phone, and she doesn’t share clothes or dreams with girlfriends. She has never been to a school dance or a school football game. She doesn’t have Facebook ‘friends’, and her teachers may refer to her ‘friends’ at school, but really they are not.

I don’t know how to facilitate those friendships. I don’t know how to create situations where friendships, lasting friendships, can happen naturally. And all that makes me very sad.

What about the others of you who have children with significant disabilities? Do your children have friends? How has that come about? And by friends, I don’t mean people who take pity on our children or view them as a ‘service project. I mean real friends. Friends like Paige, Rusty, and Diane from my past…

Someone please convince me that there is still hope.

Wednesday, December 14, 2011

Tuesday, December 13, 2011

Spenser and Dayton

Want to read something to make your day? Want to feel the joy of true inclusion? Want to be inspired by someone who feels he is too young to be an inspiration?

Check out this story and also make sure to watch the video at the end of the story. It will make your day!!

Monday, December 12, 2011

Do It Right....Or Else

Just when I thought I only had one school bus battle to fight, another rears its ugly head.

Now what, you ask? Well, for the last three days of last week, Ronnie had what we thought was a substitute bus driver and aide. I did find out late Friday afternoon that they are not substitutes - they are the new staff for his bus.

Apparently, the bus driver is 'new' as Central Office told me. And that newness is certainly apparent since she can't drive the friggin' bus!!

We have a nice long, wide paved driveway. Every bus for the last 14 years has been able to stop at the end of the driveway in such a way that the wheelchair lift can be set down with no problems. Ms. new bus driver, however, can't seem to do that. Last Wednesday, Thursday and Friday, she either overshot or undershot the driveway. That wouldn't be too terrible if we didn't have deep ditches on either side of the driveway!!

All three days, the wheelchair lift was lowered into the ditch and the bus aide just stood by and watched as Ronnie struggled to get to level ground in his chair. Fortunately Chip was out of college and met Ronnie's bus and was able to help him.

I called the main transportation office and they said they "would talk to her." Wonder how things will go today? I'm going to leave work early just so I can be home when his bus arrives. If the driver doesn't make it safe for him to exit the bus, I'm going to be very, very angry and make a scene...

Stay posted for an update tomorrow!

Friday, December 9, 2011

Just The Way You Are

This is dedicated to my beautiful Ashley...I will always love you just the way you are!

Thursday, December 8, 2011

Bus Discrimination

I wonder how many hours I've spent over the last 15 years working on school transportation issues for my kids? I'm sure it would be a large number. Just earlier this year, working through one, what seemed like a relatively simple transportation issue, involved 6 people from the school district and resulted in 62 emails before the issue was resolved.

And here we go again...

Ronnie will be 17 years old in a month. He is a junior in high school. He rides what my school district lovingly calls "special transportation" only because he uses a wheelchair and cannot be accommodated on "regular transportation."

Kids that ride regular transportation usually have to walk a block or two to catch the school bus in the morning and then to return home in the afternoon. There is no door-to-door regular transportation. The doors of the regular transportation busses open up, the kids exit, and once they are out of the street, the bus driver goes on his/her merry way. Of course, the parents of elementary age students often wait at the bus stop for their children, but middle and high school students find their own way home every day.

So, when Ronnie and I decided that it would be ok for him to exit his bus, door-to-door transportation because it is "special" and not "regular", and find his way to the end of the driveway and up our ramp into the house, we didn't expect any problems from the bus driver or aide. He needs no assistance pushing his chair, and he had never once forgotten where the ramp and the door are. In fact, during the summer, he actually goes half a block, BY HIMSELF, to our neighborhood pool.

But apparently we were wrong. The bus driver refused to leave the street in front of our home until she 'saw' me or my oldest son there.

I tried explaining that this level of independence was something Ronnie would need as he transitioned from school to the work force. I tried explaining that he was perfectly capable of getting himself into the house. I even explained that someone was always at home waiting for him, but we wanted him to get used to being more self-sufficient. But to no avail...

This seems a touch discriminatory to me. Students without physical disabilities do not need parental escorts into the house at the end of each school day. So why should Ronnie?

Want to take any bets on how many emails it will take to resolve this issue???

Wednesday, December 7, 2011

Special Exposure Wednesday

I love the colors of Christmas! Great picture, Chip!

Tuesday, December 6, 2011

Doctor? I Wonder...

MALPRACTICE - failure of a professional person, as a physician or lawyer, to render proper services through reprehensible ignorance or negligence or through criminal intent, especially when injury or loss follows.

Brooke, the daughter of one of my best friends, recently switched from having a G-tube to having a GJ-tube. For several months, Brooke had been experiencing a great deal of pain whenever she was fed. The doctors did a lot of testing but couldn't come up with a reason for the pain. Their solution was to switch to the GJ-tube.

It sounded like an ok idea, and Brooke does have much less pain using it over the G-tube. But, it comes with a major problem - it gets clogged a LOT. And unlike with a G-tube, a parent or caregiver can't change it. Changing the GJ-rube requires a trip to the hospital or medical office for a radiologist to change it and make sure it is positioned correctly.

Seeing as the tube gets clogged almost weekly, that is a huge headache, and not to mention, lots of time off from work for Brooke's Mom (unpaid time off which for a single mom is devastating.) But if it makes life better for Brooke, her mom is all for it.

So what's the problem? Well, this past Sunday, the tube became clogged again. But a call to the GI doc provided bad news. He and the radiologist were not going to come in on Sunday to change the tube, and Brooke would just have to wait until Monday. But since ALL Brooke's nutrition and fluids are given via that tube, that meant she would quickly become dehydrated or Brooke's mom would have to use the G-tube part and cause Brooke to experience the pain again.

To say this infuriated Brooke's Mom and the rest of us who know and love this lovely little family would be an understatement. If a doctor chooses to treat children with significant needs, and further if that doctor is the one who recommended the GJ-tube, then his job is 24/7. If he wants time off, he makes arrangements for other doctors to back him up. I still find it almost incomprehensible that this happened.

We parents of children with significant medical needs must rely on the medical community to keep our children alive and healthy. So much is beyond our control, and that is a horrible feeling just knowing that we can't make it better.

I, for one, consider this malpractice...just saying....

Friday, December 2, 2011

Tell Me What's Right While Doing What's Wrong

Ahh, high school. Those years when teachers and staff try to mold young minds for the challenges of the future. A time of showing the difference between right and wrong. A time to hopefully build some compassion, some sense of justice, and to learn to live together peacefully.

Yea right...

What high school should not be, in my opinion, is preaching with a "do what I say not what I do" attitude. Yet it happens in ways both small and large. We have high school coaches videotaping naked girls in the locker rooms. We have female teachers having sex with young male students. We have school personnel being arrested for embezzlement. And we have this - arguably not as significant as the other things I just listed, but still showing a careless regard for both the law and the rights of others:

Mr. school employee/door repairman, you took the last handicapped-accessible parking space. No, you did not have the handicapped placard that gives you the right to park there. But yes, it was right in front of the building where you had to fix a sticky door. And yes, it saved you from toting your bag of tools (no bigger than a student's backpack) across the parking lot. But it meant my child had to get out of my car and into his wheelchair in that busy parking lot.

Thanks for making his life more difficult and less safe. And thanks for the wonderful message you sent to the other students at school. I'm sure that those students won't feel much remorse when they park in a handicapped spot. You showed them today that it is alright...

Thursday, December 1, 2011

Take Me Away

I've always loved traveling. Whether it was for a camping trip at the beach or a plane trip to Florida or a cruise through the Caribbean, as a young adult I could plan vacations at the drop of a hat. All that changed though once I had children with special needs.

Since I first adopted Ashley and until now, the biggest trip we have ever taken was to Disney World in Florida. And that was all planned out by the Make A Wish Foundation. They arranged for all our needs, including anything related to accessibility. Now that I am on my own for arranging vacations, and now that I have two children in wheelchairs, I'm just overwhelmed and can't seem to make anything actually happen.

We have made some trips to a rented house in the Outer Banks of North Carolina, but even then we have to make sure we find an accessible house, and I have to have names and phone numbers for medical professionals and pharmacies in the area. I want to be able to plan something bigger - a trip to a far away destination - a place none of us have ever been to but have always wanted to see.

I found a website that may be able to help with the planning. It's called TravelinWheels, and it's tag line states, "Encouraging Disability Travel Around the Globe." There's lots of information on the site and even reviews about different locations. What I would like to know if whether or not any of you have ever used TravelinWheels or a similar service for planning a vacation? If not, what have you done on your own to ensure a fun and accessible vacation for yourself and/or your family?

Have you found locations that are more accepting and accessible than most? Do you have lists of places a person in a wheelchair should definitely avoid? And, if you have gone of vacations and needed the services of an interpreter or medical professionals, what have your experiences been finding those people?

Please share!