Bus Number What?

My school district does an adequate job at some things. They even do a really good job at other things. (Usually those other things do not involve children with special needs though.) But there is one thing that they do a really, really bad job at, at least in my opinion, and that is bus service for children with disabilities.

The regular school year ended just two weeks ago. Ashley, however, goes to school year round (ESY services). Since the regular school year ended and the summer services began, Ashley has had four different bus drivers and four different bus aides. The bus pickup time in the morning has changed twice already as has the bus return home time. Setting aside the fact that none of the eight drivers or aides can communicate with Ashley (they know no sign language), doesn’t anyone in school administration understand how disconcerting significant change can be to a child with a disability? Ashley is a little more understanding than some of her peers, but I have seen children with autism refuse, absolutely refuse, to get on a bus if it is a different type of bus or staffed with different people. And so far, I have been given no explanation as to why the bus staff and the schedules have to change with such alarming frequency.

I imagine it is not an easy job to plan bus routes and schedules, especially in a school district as large as mine. But I have to wonder if anyone from the special education staff is ever asked for input on issues surrounding the transport of children with disabilities. As a parent, I have never addressed transportation issues in the IEP process, but it may be time to do so.

Thankful Thursday - On Friday

Because I had the honor of hosting the 40th Disability Blog Carnival yesterday, I did not post my usual Thankful Thursday entry. So I am doing that today. It is, however, a little different than most of the Thankful Thursday entries. Today I publicly want to give thanks to Jonathan and Sophia, the two people who were instrumental in obtaining the services for Ashley that I have referenced in several other posts here, here and here. This isn't a thanks for 'winning' but for 'being' - whether we win or lose in court, Ashley and I are definitely winners in life just by knowing Jonathan and Sophia.

I am so blessed to have both Jonathan and Sophia in my life. These are people whose goodness shines so brightly that I feel momentarily blinded - just like walking from a darkened room into the bright outdoor sunlight. Jonathan and Sophia can be found hour after hour, day after day, fighting for the rights of people with disabilities. Both are employed at the Virginia Office for Protection and Advocacy, but their real managing force comes from their steadfast and enduring commitment to helping others.

Today I raise my glass in a toast to you both, thanking you with words that seem insignificant but with a heart that is full.


JONATHAN

You are Ashley’s champion, a fighter, a warrior, her knight in shining armor.

You are my hero, the person whose passion and commitment inspire me to never give up.

You touch lives – you make a difference – you are a conduit for the success of others, others who by themselves might struggle and eventually succumb to despair.

The world is a better place because of you and I am a better person for knowing you.


SOPHIA

You are a human answer bank. The depth and breadth of your knowledge astounds me.

You are the spine of support for your organization and a stanchion of strength when all around you seems tremulous.

Your every thought is weighed in your heart, and your compassion is a pledge revealed in your eyes.

The world is a better place because of you and I am a better person for knowing you.

Disability Blog Carnival - Celebrations

Happy Blog Carnival Day! Come on in, get comfortable, have some cake and let’s talk celebrations. That’s the theme of this 40th disability blog carnival. I asked all of you to define what celebration means to you. How do you have fun? How do you mark the special moments in your life and your family's life? What things do you celebrate? Big things? Little moments? Who joins you in those celebrations, and who doesn't? Are there barriers that keep you from celebrating the way your would like? What celebratory news have you recently seen in the press? And you all responded with such exuberance! There are a lot of stories to get through, but I promise it will be well worth your time. And, if you make it through the whole list, I will have a special surprise for you at the end!

Many, many of you marked your celebrations with your children and their successes in life. Mommy Dearest shared in her blog a story about her son, Jaysen and his fun times at the YMCA – fun times that weren’t defined by his disability. Attilla the Mom also shared a story about her son’s camp – one that provided a positive experience for her son, but a less than positive experience for another young girl, and that less than positive experience came at the hands of the girl’s mother. Marla Baltes celebrated her daughter’s joy around animals and shared with us all how big things like looking a person in the eye when talking to them can be learned from interacting with animals. Jude at From A Mother’s Point of View shared the joy of finding the perfect friend for her child with a disability, and Sharon from The Voyage blog shared the celebrations surrounding her son’s birthday.

From celebrating our children, we moved to celebrating ourselves and our friends. Dave Hingsburger invited us all to “Partay With Harry and Kevin Day”, and then also shared a story about a restaurant that “gets it”. Also, Cheryl invited us to help her celebrate a special honor which she has received.

Wheelchair Dancer told us where to go to get our groove on. Over at If The World Had Wheels we learned that shopping for a wedding dress in a wheelchair, while exhausting, is a remarkably fun time, and Glenda shared with us how exciting it is to have a book published. And finally, James shared with us how to become successful public speakers.

Two of my favorite stories of celebration came from Howard at Blogs[with]TV, and Jodi at Rheimer Reason.

Frida at Frida Writes shared some interesting life rules and some good insurance news. Kwanzoo wrote about putting disabled gamers back into the game, and Stephen wrote one of the funniest book reviews I have ever read.

We have several stories celebrating spring and summer – one from Kay at the Gimp Parade, one from The Special Parent, and one from Left Thumb Blogger.

And finally, some of the most beautiful posts came from our photo bloggers. You really need to check out Body of Work, Friday Flowers, Friday Photo Blogging, and my all-time favorite, Slurping Life.

Congratulations! You have made it through all the celebrations! Are you exhausted? Well, find that last burst of energy deep inside you and celebrate with Snowball!

Now, here is my special surprise. I can’t serve you a piece of celebration cake right now, but I can share with you my Aunt Willie’s special fresh coconut cake. Thank you all for participating in this carnival, and I hope you enjoy your day!



This fresh coconut cake is made in two layers with a fresh coconut topping and coconut milk.

INGREDIENTS:

• 2/3 cup butter
• 1 cup sugar
• 4 eggs, separated
• 2 cups sifted cake flour
• 1 tablespoon baking powder
• 1/2 teaspoon salt
• 1/2 cup coconut milk
• 1 teaspoon vanilla
• 1/2 cup grated coconut

PREPARATION:

In a mixing bowl, cream butter until fluffy. Add 1/2 cup sugar, beating until light and fluffy. Add egg yolks, beating well. Add sifted dry ingredients alternately with the coconut milk. Stir in vanilla and coconut.
Beat the egg whites with remaining 1/2 cup sugar until soft peaks are formed; fold into the cake batter. Pour batter into two greased and floured 8-inch layer cake pans and bake at 375° for about 25 minutes. Remove fresh coconut cake to wire racks to cool.

Topping

• 1 cup heavy cream, whipped
• 1 tablespoon sugar
• 1/2 teaspoon vanilla
• 1 coconut, shredded or grated

In a bowl, beat cream with the sugar until thick. Add vanilla Spread between layers and over top and sides of cake. Sprinkle cake with fresh coconut.

News That Shouldn't Be

Some days when I am researching news stories about people with disabilities, I have a really tough time finding anything. Then there are days like today when many stories just seem to jump off the page, all vying for the ‘Un-freaking-believable” award. Here are today’s stories, and I stopped looking for more after just 5 minutes…

Seems a mother and her son with autism were kicked off a plane in North Carolina. The little boy, just two and a half years old, didn’t like the flight attendant continually making his seatbelt tighter and then yelling at him. I’m with you, little Jarrett, I would have, as the flight attendant so eloquently put it, pitched a raging fit also.

And, plane horror stories are not confined just to the United States. A young mother traveling alone with her two seven year old physically disabled twins was abandoned on a plane in Mallorca. The mom was being considerate and decided to let all the other passengers disembark before trying to get her sons off the plane. The flight crew said they would be back to help her carry the boys. Seems they forgot….

Next I ran across a story in the UK Guardian about children with deafblindness not receiving the services to which they are entitled. Even though this story focused on the UK, the words ‘United States’ could easily and correctly be substituted.

And, I don’t mean to be picking on the UK today, but I don’t make these stories up. A young girl whose family is from Gambia was brought to the UK to have cochlear implants. Soon after the surgery, the UK government told the girl and her family that they could not stay in the UK, and would have to return to Gambia. The girl’s family said, “Wait, you can’t just implant these things and send us on our merry way. They require regular attention to help a person realize their benefits.” That is, of course, very true as any family that has gone through cochlear implant placement for their child well knows. This reminds me of my blog post from last week titled,Pimp My Ride.

And finally, a story that is today making headlines across the US, the Supreme Court has decided that child rapists cannot be executed if convicted of that crime. While I don’t want to get into a debate on whether the death penalty is right or wrong, I can imagine that the eight year old girl that was raped in Louisiana by her stepfather (the man whose case was appealed to the Supreme Court) and who was described by the prosecution as suffering internal injuries and bleeding, requiring extensive surgery, as well as suffering severe emotional trauma, will at some time in her life wish her stepfather had killed her.

So there it is - all the news that should never have happened...

How are WE doing today?

Things that annoy the h*ll out of me:

• An hour and a half wait past an appointment time at the doctor's office - just to be taken back to an examination room to wait another 30 minutes.


• Nurses who say "How are WE doing today?". WE are really ticked off at having to wait so long...


• Being asked to state AGAIN the list of medications Ashley is taking when I have already written down the medicine name, the strength, and the dosing instructions and presented that written information to the same person who is asking the question.


• The doctor, extremely attractive though he may be, apologizing for being "a little late".


• And finally, a nurse chastising me for not bringing an MRI written report to the appointment - a report that had not even been produced by the time we left the hospital. Silly me, I thought the hospital would forward that written report to the doctor's office, JUST LIKE THEY HAVE DONE EVERY 3 MONTHS FOR THE LAST 3 YEARS!

The Dragon Is Slain!

Two and a half years ago, I requested that Ashley’s health insurance program provide modifications to our bathroom. I strongly believed that with the appropriate modifications and support, Ashley would be independent in her personal care tasks despite her significant disabilities. I knew then and I know now that she can bathe and shower by herself – she can wash her own hair and brush her own teeth – and the only support she needs for toileting is a grab bar. But, she has been unable to do these things because she did not have the appropriate supports. Ashley’s insurance program, despite the fact that they have never laid eyes on either Ashley or our bathroom, decided that she did not need the supports.

When making the initial request, I made sure I had all the necessary paperwork to back up the request. I had reports and letters of medical necessity from Ashley’s pediatrician, her neurologist, her ophthalmologist, and her occupational therapist, the person who had been working for many years to teach Ashley how to accomplish her self-care tasks. However, within a few short days of making my request, the insurance program denied it. Their reason – the type of insurance waiver Ashley was on didn’t allow for environmental modifications. There was no discussion of medical necessity, or the fact that the modifications would ultimately reduce costs in other areas. It seemed that the insurance program would prefer Ashley be institutionalized and ‘taken care of’ rather than provide the tools she would need to become independent. So, I appealed, or rather, I contacted an attorney and then appealed the decision.

The lawsuit weaved its way through the denying organization, a so-called independent hearing officer (who just happened to report to the head of the denying organization), Federal court, and back again to the denying organization. Witnesses were subpoenaed and interrogated. The Attorney General’s office for my state became involved, and finally a trial was held. Six months, yes six months, after the trial, the ‘independent’ hearing officer ruled – the request was again denied. I’ve written previously about all this, albeit a little obtusely since the case was still in litigation.

As my attorney and his staff were preparing yet another appeal to yet another court, a settlement offer was proposed, allegedly to hold down the costs of more legal wranglings. So, where are we today? According to the details of the settlement agreement, all (yes, ALL) of the modifications I originally requested will be made. In addition, remember the reason I was given for not granting the request initially – that the type of insurance waiver Ashley was on wouldn’t cover environmental modifications? That has changed also. Any person on that specific waiver will now be able to access up to $5000 per year for environmental modifications.

I have contacted a contractor who will begin the modifications in early July. Ashley will finally have the chance to reach her potential in the area of independent living, and her future now holds the promise of staying in her family home for the remainder of her life. Was the fight worth it? To me and to Ashley, most definitely. To all the taxpayers who bankrolled the long, drawn out battle – doubtful.

Left Out - On Purpose

This is the third story on blatant school yearbook discrimination I have heard from the most recently completed school year. And, if I've heard about three, there are more than likely dozens more. How can school district officials think this practice of excluding children with disabilities from the yearbook be acceptable? I really, really hope that parents are not going to stand for this...

Leaving Out Holden and Hunter