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

Thankful Thursday

Today I am thankful...

• That things went relatively well at the hospital for Ashley today while the doctors addressed issues relating to her three brain tumors


• for whomever it was that invented anesthesia


• For the lovely flowers my friend Lynnette sent me for my birthday


• For Sara and Holly who have been filling in for Amy (Ashley's aide) while she is away for her grandmother's funeral


• For the slightly cooler temperatures this week. Today is beautiful - low humidity, temperatures in the low 80's


• For handicapped parking spaces - it makes my job as a mother to a child in a wheelchair so much easier


• That is just a few short weeks Ashley will have a completely accessible, new bathroom


• That Amy wants to paint Ashley's bedroom this summer


• That despite the crazy Spring weather we have had this year (first colder and wetter than usual, followed by scorching August-type temperatures), my vegetable garden is finally starting to flourish


• For the ice cream truck that rides through our neighborhood every evening, its bell ringing and kids racing to their homes to ask for money from their parents

Pimp My Ride

I have been doing some research recently about the use "appropriate technology" or "appropriate technical assistance" versus providing technology or assistance based on traditional belief systems. I believe my interest in this grew from a time not too long ago when my school district was insisting that Ashley, my daughter who has deafblindness, use a picture based communication device. On the surface, it might seem like a good tool with which to train Ashley to communicate. She has just enough vision in one eye with which to see the pictures on the device, and if you turn the volume up to max, she might be able to make out a few of the device's spoken words. But, there were several problems.

First, for the device to speak loudly enough for Ashley to hear it, it would be most annoying to those around her. Secondly, she didn't want to use it. She has always prefered sign language to communicate. The school's argument was that very few people signed and the communication device would make it easier for Ashley to communicate with those people. Setting aside the fact that it is not my goal to make life more accomodating for people other than Ashley, Ashley is quite aware of the fact that not everyone can sign. And she adapts herself to those situations. For example, if she wants something she can't reach, and the person near her doesn't understand her sign language, Ashley will take the person's hand and lift it towards the item she wants. In all her 13 years, I've never seen anyone not understand that gesture.

I could list many other situations involving Ashley and other people with disabilities in which inappropriate technology was used. The result is never good. The article linked below, a story from the BBC News Channel, cites an example of the use of appropriate technology. I really believe it is time for providers (and this includes families) to take into account the preferences, the environmental, ethical, and economic concerns of people to whom technology and technical assistance is being provided.

Wheelchair for Africa

Today

Today I didn't make my bed.

Today I put real butter on my morning toast.

Today I drove the longer, more scenic route to work.

Today I had cookies for lunch - just cookies.

Today I told everyone at work that they had to be nice to me.

Today for dinner, my oldest son is cooking me a steak on the grill - rare, please.

Today I will add a quarter mile to my evening power walk.

Today I will watch a sappy chic flick while eating homemade coconut ice cream.

Today Loreal and I will take care of the gray hair making its debut appearance.

Today I will drift off to sleep while reading the new book that Amy gave me yesterday.

Today is my birthday.

Happy Birthday, Me.

My First Time Hosting!!

I will be hosting a Disability Blog Carnival - MY FIRST ONE - on June 26th. I'm very excited and hope that I can do as grand a job as all the hosts before me have done.

Since this is my birthday month, and since it is one of those often dreaded milestone birthdays, I would like the theme for the carnival to be CELEBRATIONS. I would really like to hear about your definition of celebration. 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? Do you prefer cake with or without ice cream - sorry, I got a little off track there...

I'll get to cake baking and coffee brewing. You get your links emailed to me or by using the blogcarnival.com form by Monday, June 23rd. And, while you are thinking about CELEBRATIONS, check out the current disability blog carnival, hosted by Emma at The Writings of a Wheelchair Princess where the theme is, "If I knew then..."

Carlye, Bodhisattva, Amanda and Myles

Today’s post is a potpourri of items that visited my brain this week. Although I probably could write an entire blog on each, these four items are kicking and screaming to come out RIGHT NOW.

First, today is the last day of the regular school year for my children. Ashley will continue through the summer with her ESY (Extended School Year) services, but today she will leave behind the best teacher she has ever had. Mrs. Artis is transitioning from teacher to mommy, and Ashley is going to miss her terribly. Only a few inches taller than Ashley, Mrs. Artis developed a special bond with my special daughter. In our pre-bus morning conversations, I would ask Ashley if she was going to see Mrs. Artis at school. Her face would light up with a huge smile as she signed ‘Yes.’ I wish you all the best, Mrs. Artis, and you had better bring baby Jayden around to see us A LOT. Remember, I know where you live….





The second bit of potpourri comes from my buddy, Esbee at the Life in Forsythe blog. Prepare to be absolutely mesmerized by this You-Tube video. It is titled, “The Thousand-hand Bodhisattva”, and it is performed by 21 young adults who are deaf and in some cases, also visually impaired. They are members of the Chinese Disabled People’s Performing Art Troupe. In Buddhism, a bodhisattva is a person who lives to help other people become better and better. In one very old Buddhist story, a bodhisattva was trying to reach all the people of the world, but the bodhisattva's two hands were not enough, so the bodhisattva was given a 1,000. This dance is a way of showing how beautiful that might be.



The third thing in my potpourri dish this Friday is perhaps the best explanation I have ever heard of language processing problems. Amanda at the Ballastexistenz blog has a great post titled, “How (not) to ask me questions.” For any parent who has a child with similar issues, you absolutely must print this out and share it with every person who interacts with your child, both now and in the future.

And finally, my potpourri dish holds a very special family. Myles is an 8th grader at Ashley’s school. He was Ashley’s first real boy-crush, and I just don’t know what we are going to do now that Myles will moving on to high school, yet Ashley has one more year in middle school. I wrote about Myles and Ashley in the first post I ever wrote for this blog, and I wrote about him again when he came to Ashley’s 12th birthday party. Myles is also one of the students I told you about in May who organized a 5K run to benefit the Massey Cancer Center, and it was all done as a class project. Myles is an amazing young man, and just a short conversation with his parents reveals the reason for that. This is a family that knows – REALLY KNOWS – how to raise children to be responsible, compassionate, and respectful citizens of the universe. We will miss you terribly, Myles, as you move to high school, but at least your little sister is still at Ashley’s school, and we expect you to visit often. Kisses and hugs, my dear young man.

Thankful Thursday

Today, I am thankful...

• For email. Communicating with school administrators via email rather than face to face keeps my blood pressure from getting too high!


• For summer evenings when I can stand out next to my vegetable garden, watering it with the hose. It's quite relaxing.


• For the birds who like to play in the spray of the hose while I water the garden


• For the ice cold strawberry wine cooler I enjoyed with my dinner last night.


• For friends like Lynnette and Amy who will listen to me complain after a particularly difficult day at work.


• For homemade pineapple salsa. The recipe is below and it is great on grilled chicken or shrimp.


• That both my boys hold doors for women and let them walk through the door first.


• That Post-It notes now come in a rainbow of colors. For an admitted Post-It addict, it helps brighten my world.


• That when walking my dog Tuesday evening, we found a baby rabbit that had lost its way home. Lizzie, my dog, kept nudging it with her nose until it once again saw Rabbit Mommy and then we watched it scurry happily home.


• For Banana Slurpees - as tasty as a banana popsicle, but slushier

Pineapple Salsa

1 cup finely chopped fresh pineapple
1/3 cup finely chopped red onion
1/4 cup finely chopped fresh cilantro
1/4 cup pineapple preserves
1 tablespoon finely chopped seeded jalapeño pepper
1 1/2 tablespoons fresh lime juice
1/4 teaspoon black pepper

(This is just as good without the jalapeño...)

Getting Personal

One of the more frightening aspects for me of having a child with significant disabilities has been the hiring of personal care aides. I'm so very grateful that Ashley has aides, but finding and retaining really good people is daunting, to say the least.

Personal care aides assist a person with a disability with many things, even very personal and intimate everyday tasks like bathing and toileting. I still am very uncomfortable with a new hire seeing my teenage daughter naked and helping her with those tasks.

Ashley and I have been very blessed to find Amy, the aide that has been with Ashley the longest, and who is more a part of our family than an aide. But there is still a need for backup support, and that's where my discomfort surfaces. So I did some Google searches on finding, managing and retaining quality personal care aides, and I found a great resource document. It is a publication of the Research and Training Center on Independent Living, and it is titled, "A Step-by-Step Guide to Training and Managing Personal Assistants: Consumer Guide ."

There are chapters on hiring and conducting background checks, supervision and management, performance checks, record keeping and paying an assistant, and avoiding ripoff by assistants. There is even a chapter titled, "The Intimate Side of Life."

It really is a great resource - very practical and easy to understand. I encourage anyone who, like me, is a little uncomfortable with the transition to personal care services to take a look at it.

The Zac Browser

As parents, grandparents, and other caregivers for children with significant disabilities, we often feel our children are more capable than they sometimes appear to be. Usually this is because we do not have the appropriate tools and supports to provide and facilitate the display of their capabilities. Teachers try to use the tools with which they are most familiar or which are readily available through meager education budgets. Therapists use the tools and techniques they learned in college and are often viewed by their administrators as being a bit too rebellious if they attempt to use unconventional tools and techniques. But when someone is willing to step outside the box of convention, the result in our children is often phenomenal.

John LeSieur is one of those people willing to step outside. Mr. LeSieur believed that with the right tools, his grandson with autism could and would want to use the Internet. Even when observing his grandson’s utter frustration with the huge array of options presented when using a PC, Mr. LeSieur didn’t give up. He decided to design a tool that his grandson could use.

Mr. LeSieur built the Zac Browser (named after his grandson, of course!), and is making it available to anyone at no cost whatsoever.

This story in last week’s Washington Post provides additional information and a link to the free browser. It’s well worth the time and effort to download if you have a child who, like Zac, prefers fewer options when working with a tool.

Good job, Mr. LeSieur, and a special thanks to all the parents and professionals who are willing to step outside the box to unleash the potential in our children.

Happy Endings

Ashley is pictured to the right with her teacher, Mrs. Artis.

Only one more week of school left, at least for all my children but Ashley, and overall it has been a good year for everyone. Chip has begun his planning for senior year and beyond. He’s evaluating colleges, taking the SAT and ACT, and doing very, very well with all his AP courses. Corey, as I mentioned a couple of months ago, has finally pulled his grades up to honor roll level – a huge, huge accomplishment for him. He has his summer filled with a performing arts camp and volunteer time at our local library. Jessica is doing ok, although her move from one high school to another mid-year did cause some consternation (more for me than her). She has some excellent transition support services being put into place, and is well on her way to the future she envisions for herself. And Ashley will just move from her regular school year to her ESY (Extended School Year) services. But, it has been an excellent year for her also.

One of the biggest contributors to Ashley’s success in school is consistency and high expectations. Amy, Ashley’s aide both at school and home, provides both of those things, and the result has been monumental strides for Ashley both last school year and this one that is ending. In addition, Ashley’s teacher this year ‘got it’. She understood that Ashley was capable of academic work, not just the life skills most school staff tried to push her towards. Unfortunately, that teacher is leaving at the end of this year, and the new teacher may not be so quick to see Ash’s potential. But the good news is that the current teacher made sure that Ashley’s IEP is academic in nature, and that IEP will follow Ashley into next school year.

Another good thing is that Amy will provide Ashley’s ESY services. So with the consistency of an excellent intervener like Amy, Ashley will be poised for more success next school year. The challenge will then be convincing the new staff of that potential. But, I do feel better about Ashley’s upcoming 8th grade school year than I have about any other school year in the past.

So a big THANK YOU to Amy and Mrs. Artis. You both support Ashley in all her academic pursuits, and you do so with love, understanding and respect. No parent could want anymore!

Wow! Just Wow!

I can think of no better story to end this week - the story of Rossana Penaloza, who is described in the following article from the Washington Post as a 'Dancer for the Disabled.' But Ms. Penaloza is so much more than that - she is someone who 'gets it.' Read the article in its entirety and you will see what I mean.

Sand in an Oyster

A special thanks to Esbee at the Life In Forsyth blog for pointing me to this article!

Thankful Thursday

Today I am thankful ...

• For the creamy white giant blooms on my magnolia tree


• That at least 95% of neighbors are now participating in curbside recycling


• For Vietnamese food


• For construction contractors who seem to really value their customer's comments about the projects they undertake


• That there is only one more week of school!


• And blessed to have a home with air conditioning and ceiling fans on days like today when a heat advisory is in effect


• For cats - they have such a calming effect and I believe every office should have several and they should be invited to every staff meeting :)


• That the Democratic primaries are FINALLY over


• That yesterday Ashley let one of our cats kiss her


• That I was able to spend a sick day at home with NO ONE ELSE around

Saintly Hypocrisy

In the wise words of my friend, Jane - "Yes, God is Love... whatever you do to the least of my brothers... let the little children come unto me.... Hypocrisy is nondenominational anyway."

Check out the story about a young man named Adam Race (pictured to the right) for an explanation of her comments:

Mom fights Church Ban on Her Autistic Son


And here are some other blogs I have written on this subject. Just for the record, my family still has not found a church to welcome us…

In Nomine Patris et Fillii et Spiritus

Still Searching

Something More

One of the families that participates in a listserv focused on children with deafblindness shared this with all the participants. It was written by Lori Borgman. Lori Borgman is a newspaper columnist and author. You can find her at www.loriborgman.com. Most of the time I don't enjoy reading these types of articles - articles that go on and on about how wonderful parents of children with disabilities are. But this article has a slightly different slant, and I did enjoy reading it. Hope you will also.


SOME MOTHERS GET BABIES WITH SOMETHING MORE...

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said.

Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule. Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but we mothers want what we want.

Some mothers get babies with something more. Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you. Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler. As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body. Everybody will bear something at some time or another.

Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the praise and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law. You're a woman who wanted ten fingers and ten toes, and got something more.

You're a wonder.

Benedryl, Fly Guts and Snot

I remember the Friday nights of my youthful adulthood – the anticipation at the end of a long work week – the plans for a drink after work followed by dinner with friends – perhaps a movie or some other activity – not worrying about how late the night became because I knew I could sleep late the next morning. Then came the Friday nights of my mature adulthood…

This past Friday night, Miss Amy was preparing Ashley’s medicine which would be followed by the usual bedtime preparations and routines for Ashley. I was in the kitchen chatting with her and playing with Ashley when I noticed that one of my born-in-a-barn boys had let a fly in the house. The fly was happily buzzing around the kitchen window. I decided to get the flyswatter to kill it (a major accomplishment for me since I usually become quite unsettled whenever I see any kind of bug). I waited for the fly to stop flying and land on the window, and then I swatted hard and let the flyswatter drop (I don’t like killing bugs either because I might miss and then they would attack me). Amy started laughing so hard that she dropped the Benedryl she was preparing – the dog immediately came over to help ‘clean up’ the Benedryl from the floor – Amy, still bent over from laughing, raised her head and knocked her head on the cabinet overhead – and it was at that moment she and I realized that Ashley’s head was bent down because she was seeing just how long an unbroken string of nasal mucus she could dangle from her nose.

Ah yes, Friday nights…at least the dog slept well, Ashley’s nasal passages were clearer, and the fly, well the fly just had a really bad day.