Memorial Day - 2010

Voice of The Fallen
by Alex Kaye

far away a voice is calling
someone long ago, who’s fallen
I listen hard and hear it say
hear me on memorial day

under the colors, of a flag true
I fought a war and died for you
oh listen to me when I say
hear me on memorial day

you knew not me, I knew not you
the war I fought was just, and true
I knew just what I had to do
the duty of a chosen few

oh listen mother, hear me dad
don’t be angry. don’t be sad
war is dark, notorious
but the goal was glorious

listen to me, hear me say
I died for freedom on that day
I did not die in vanity
I died for all humanity

and as I lay here, dying, dying
I think I hear some voices crying
I think I hear my mom and dad
but no, these voices are not sad

I thought, I’s sure my fate was sealed
I thought I felt the killing steel
I watch the battle from the ground
I only see, I hear no sound

how things are clear. a perfect sense
the struggle of the innocence
oh if I’d known before the war
it is the same side we fight for

I was only just a knave
but my heart was strong, and brave
the duty of a chosen few
I did just what I had to do

sometimes I’m your brother older
sometimes I’m the unknown soldier
if I could only make you see
we all are one, humanity

through the silence hear me say
remember on memorial day
remember what this day is for
remember me, and stop all war

Season Over

Four children with IEPs. Six meetings in the last six weeks. But I am done for this school year!!!

It’s so interesting to me how different IEP teams conduct meetings differently. Now all these are in the same school district, a school district that is OCD about following the rules (except when they don’t).

For Jessica’s IEP, the team just passed the document around via email. We had our discussions via email, and appropriate changes were made. Then I signed the document electronically and sent it to school electronically.

Ronnie’s IEP meeting, the first held for him in this school district, involved 16 people and two attorneys. The attorneys were not for the reason you probably suspect, but for now, I can’t share anymore. The final result however was that 2 weeks later, a great IEP had been developed for Ronnie’s transition to his new school.

Ashley’s IEP meeting was pretty run of the mill. Of course, that has not always been the case, but I think we are finally re-establishing good working relationships. Until high school, her IEP meetings were always contentious, lasted hours, and often ended in mediation and once in due process. But this year was fine. She has a good IEP and next school year is looking to be a positive experience, much like this first year of high school.

Then, we had ESY IEP meetings for both Ashley and Ronnie. Again, no problems and good results.

Today I finished up with Corey’s IEP meeting. Corey’s meeting was only attended by me, the case manager, and a general education teacher. Of course, we were missing an administrator, but I was too tired of meetings to quibble about that. Corey’s meeting was interesting because of the contrast between Corey’s actual abilities and his motivation to do a good job, or even a passable job, at school. It’s tough to write goals and objectives when the primary reason Corey is failing 11th grade is lack of motivation.

Also, because Corey can’t plan and imagine a future any further than tomorrow, we did beef up the IEP with objectives requiring him to explore and consider life after high school. I am so worried that he will eventually squeak through high school, and then have absolutely no place to go. College isn’t looking likely. The military, his first choice, is even questionable. I proposed to the team that we hit hard on some vocational skills and they agreed. So, we ended up with another good IEP.

Other than all the time I had to take off from work, this year’s IEP season wasn’t too bad. But I am really, really glad it is over!

A Day In The Life of a Superhero

Ronnie, aka Super Ninja, starts his day by donning his disguise - an improbable mix of plaid and checks designed to throw off anyone who might suspect his true purpose in life.

He goes about his day at school, laughing with his friends, charming his teachers, and always playing the loveable little geek. To further throw off his foes, he even picks up orthotics designed to mask his true superhero powers.



But once home and back in his lair, he and his partner ninja, Mark, meet via the video phone to plan their next crime thwarting adventure.



The world is indeed a safer place tonight because of the presence of Super Ninja Ronnie!

Special Exposure Wednesday

This is just what I needed to see - a smiling neurosurgeon!!



Dr. McYummy had good news to share with us - Ashley's tumors have not grown! He said we will do MRIs annually for two more years, and if they reveal no changes, we will go to every 5 years.

There are a couple of things still to be tended to though. First, Ashley has had some weakness in her right arm and hand. She will be having an MRI of her spine to see if there are any issues there. (Remember, the disease she has can cause tumors to grow anywhere....).

And, Ronnie is going to have x-rays of his shunt, from head to belly, just to get a baseline. Dr. McYummy said everything looked good with the shunt. He felt around, and checked a few things that might indicate a problem, but nothing caused him concern.

Two good pieces of news!!

Happy Wednesday everyone, and make sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Dr. McYummy Day!

Today is Dr. McYummy day! Ashley and Ronnie will be visiting their neurosurgeon. I'm anxious to get the results of Ashley's MRI, and the handsome doctor will also be checking out Ronnie's shunt.

I'm very nervous about the MRI results, but figure if there was anything major, the film reader would have contacted the doctor and he would have contacted me. But still, I'm worried.

And Ronnie is worried also. The last thing he needs right now is problems with his shunt. He isn't exhibiting any symptoms that make me think there is something wrong. This appointment is just to establish a relationship with the doctor and Ronnie.

Hopefully tomorrow I will have good news to share with everyone. But until then, here's a little bit of good news. During a trip to the pharmacy this past weekend, I needed BandAids. Imagine my surprise when I found that the BandAid box had Braille on it!!! I'm very impressed....

Forced To Leave Home, Part 2

Cheryl from the blog Finding My Way: Journey of an Uppity Intellectual Activist Crip, left the following comment on last Friday's blog post. I thought it important enough to repost here:

_____________________________________________

ADAPT had Syracuse/Cornell do a study that found that funds for the Community Choice Act would cost middle class Americans $6.07 in taxes a YEAR to keep people in the community. That's without factoring in the savings from all the institutions that would be forced to close as a result. Then we paid for a Harris Poll where 2/3 of Americans said they would support the bill before they even knew how much it cost. After they found out it, that number went up to 89%. Now what bill has an 89% approval rating? All you have to do is skip 1 trip to Starbucks a year. Here's a link to the fact sheet:

Cost and Benefits of the Community Choice Act

So, what I want to know is where do I send my $6.07
________________________________________________


Watching states balance their budgets by cutting services to people with disabilities is not the only way they are forcing more institutional decisions.
I spoke with a mother of a 15 year old young man who is severely disabled but who wants to stay home with his family. To accomplish that, the family must have the assistance of nurses around the clock. Unfortunately, they live in a smaller city in Virginia, a city not known for available service providers.

This young man is approved for nursing services and for enough hours to provide the assistance the family needs to keep their son home with them. But they can’t find nurses to staff the positions that have been approved. This is yet another example of how people with disabilities are being forced into making a decision to institutionalize.

I believe that our state Medicaid services should be required to maintain an adequate number of providers for the people with disabilities in the state. Whether that means raising salaries and reimbursements rates, or providing additional training, whatever is required to make sure that people have the support they need to stay in the community.

But there’s the rub – I don’t believe our states, or at least my state, wants people to remain in the community. Why else would our budget this year provide funds to build a new institution and not fund more community based waiver slots?

Forced To Leave Home

Born with cerebral palsy, Ms. Hickey, now 67 years old, is confined to a motorized wheelchair. She lives alone and relies on certified nurse's assistants to get her in and out of bed, bathed, clothed and fed.

In December, she received a letter from the South Carolina Department of Special Needs and Disabilities, saying her weekly 50 hours of personal-care help was being cut to 28 hours. That meant Ms. Hickey would get help for two hours in the morning and two hours at night. If she needed to use the bathroom in between, she would sit in a soiled diaper.

Not a day goes by that I don't hear or read about how states are trying to balance their depleted budgets by cutting services to people with disabilities. Lulled into a false sense of budgetary security by the influx of stimulus money, the time to pay the piper is now upon state governments.

People with disabilities are being forced into institutions because home-based services are the first things cut. Where is the Olmstead Decision in all this? Don't our state leaders read the literature that has proven it costs more to keep a person in an institution rather than in their home and their community?

This article from the Wall Street Journal is just one of many more to come, I fear.

The Color of Water

I love having a geek in the family! My son, Chip, is always finding things that I never knew I needed, but then realized I couldn't live without.

Today's find is something that will help Ashley know when the water from our faucets is either hot or cold. Even though I had already put red and blue electrical tape on the handles, she had a tough time seeing that with her significant visual impairment. I needed something else...

Chip came to the rescue by finding a faucet light with led heat sensitive color changing ability. We had seen similar products a year or so ago, but the cost was prohibitive. Chip found this one on Amazon and it only cost $10!!

Here are some pictures. The water appears red when the temperature reaches 85 degrees. Otherwise it appears blue. Needless to say, Ashley loves it!

Special Exposure Wednesday

Ronnie knew he was finally accepted as a member of our family when one of our cats decided to crawl under the covers of his bed! Here he is pointing at the lump that is Kitty Carlyle!



Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs, and then drop back by that website at 4pm for my weekly post!

Misplaced Pity

pit•y
   ˈpɪt i [pit-ee] noun,pluralpit•ies, verb,pit•ied, pit•y•ing.
–noun
1.
sympathetic or kindly sorrow evoked by the suffering, distress, or misfortune of another, often leading one to give relief or aid or to show mercy.


I feel like people pity me sometimes. It seems like they feel sorry for me, thinking I’m not able to do the things that most people my age do, not able to go places or engage in activities considered normal for adult women my age.

I appreciate if people want to help me, as long as the offer of help is not accompanied by pity. I don’t understand why some folks feel that my life is one of suffering or distress.

Yes, my life is sometimes difficult, but difficult doesn’t equal suffering or distress in my mind. Yes, I could use a little more sleep sometimes, and yes, a night out with friends (and not children) would be pleasant. But, I don’t feel like I am missing anything in life. In fact, I feel my life is more blessed than those of people who do not have children with special needs.

I am the one that feels pity for those people who do not know the joy of raising a child with special needs.

Seeing your child walk for the first time at age four…

Hearing your child say ‘MaMa’ when you were told she would never talk…

Watching your child’s eyes light up when they realize that there are movies that are closed captioned…

Feeling the soft touch of your child’s hand on your cheek when just a few short years ago that same child broke your ribs in a fit of rage…

Seeing your 2 ½ year old child have to get a G-tube because they only weigh 15 pounds, and then seeing that same child eat pizza, cheeseburgers and spinach salad a few short years later…

Being told that your nine year old child will never be toilet trained and knowing the doctors were so wrong by the time that child is 15 years old…

Seeing your child sign ‘I love you’ for the first time…

And feeling so much love from your 5 teenaged children every day that you feel your heart might just burst….

That, my friends, is nothing to be pitied. That is to be envied and desired.

(The picture above is titled "Pity" and is by William Blake.)

Friday and Saturday

FRIDAY:

Ashley's MRI went ok. She's been having these every 6 months for the past three years, and I hoped that over time she would get used to the hospital, the people, and the procedure. She seems to have done that to some degree.

The first couple of years, she was so anxious when we arrived at the hospital that she was given a medicine to relax her prior to the actual anesthesia. That worked well except for one thing. When she had that medicine in combination with the anesthesia, she was really, really slow at waking up. That scared me to death.

But the last time (prior to Friday's visit), she seemed relaxed enough to skip the first medication. We still have a bit of a struggle getting her onto the stretcher, but after the procedure, she woke up quickly and was ready to go home. She was almost back to her normal, happy self by the time we arrived home.

On Friday, the staff moved quickly, and we didn't have to wait long. Because of that, I decided to skip the first medication again. She was fine until she saw the stretcher. There was no way she was going to get on it.

I tried bribing her with the nurse's watch. I tried my sweet mommy voice. I tried my stern mommy voice. Those things were all a waste of time because Ashley was NOT going to get on the stretcher.

Keep in mind that Ashley is 15 years old and as strong as a WWF wrestler. Even though I tried to physically get her on the stretcher, it was a task that was doomed to failure. At that point, the anesthesiologist suggested we try a different kind of medication - Ketamine. He said it was a shot and would start to work in about 3 minutes. I agreed, and at exactly 3 minutes, Ashley got loopy. It still took the anesthesiologist holding her top half and Chip, my 19 year old son, holding her bottom half to get her on the stretcher, but finally she was there and nodding off.

I worried that she might have a tough time waking in the recovery room after the Ketamine. She woke up pretty quickly but she was loopy for almost the rest of the day. Like a drunken sailor....

Chip and I got her home and she spent the rest of the day on the couch. I'm not sure how I feel about the Ketamine though. I may have to do some research before agreeing to use it again. I really didn't like seeing Ashley so out of it for so long..

SATURDAY:

We couldn't have picked a worse day to go to Busch Gardens. I figured it was early enough in the season that it wouldn't be crowded yet. What I didn't take into account were the thousands of middle school music students from across Virginia who were there to do something musical....Not sure what, but really sure that it was super crowded.

Each school district had their students in matching teeshirts. I stopped counting the different colors of teeshirts the students were wearing, but it was like a giant rainbow had vomited all over the park.

Now I like middle school students, but I have decided that I only like them in small numbers - less than 100, for example. It was really difficult pushing two wheelchairs through the crowds, and the lines at all the rides were just too long to wait in. Add to that the 85 degree temperature, and our first visit of the season was a disaster.

We have season tickets, so we will be going back frequently. But, since this was Ronnie's first visit, he was not very happy. He wanted to stay and do more, and no amount of reassuring him that we would be back would work.

Hopefully he will forgive me, and maybe, just maybe, I will spring him from school early one day and we will go without the crowds!

Dear God, Ashley and I Need You

Tonight I am anxious and worried because tomorrow Ashley has an MRI under anesthesia. The MRI is being done to check the status of the three brain tumors that were identified two years ago.

When the tumors were first identified, Ashley had MRIs every 4-6 months. But, because they never seemed to be growing or changing, the neurosurgeon suggested going to one year intervals. This has been an extremely long year.

I've not noticed anything that would make me think the tumors were growing or doing anything different than they have the last two years. Both her neurosurgeon and neurologist do not feel the tumors are the source of Ashley's seizures. But still...there are things in my baby's brain that shouldn't be there.

I probably won't get a status report from the MRI until we see the doctor in two weeks (unless, of course, the person who reads the MRI thinks otherwise). No news will be good new, right??

Please keep my sweet daughter in your prayers tomorrow. General anesthesia scares me. Brain tumors scare me. My fears will not subside until I have her home with me tomorrow afternoon.

Wish Upon A Star

I contacted our local Make A Wish organization to see if Ronnie would qualify for a wish. He does, and the Make A Wish folks are starting to process all the paperwork. I'm so excited for Ronnie, but I'm also running into a wall. I can't seem to make him understand that wishes can be big!

I guess coming from a past life of not having much - living in a very disruptive home with his mother - and then in several foster homes - wishes don't come easily for him. He's probably wished for things in the past and those wishes never came true.

So now if I ask what he would wish for, he would probably say chicken nuggets.

I've shown him the website for Disney World. I've talked to him about other trips. We've reviewed the wishes that other children have made. But he just doesn't seem to grasp the idea. I have some ideas about things he would really like - being a superhero for a day, being a character in a comic book or a cartoon, having a go-kart track in the backyard - but he just looks at me like I am crazy.

I've shared these concerns with the Make A Wish staff, and they assure me that they have folks that will talk to Ronnie and help him figure out what his wish is. So I'm going to stop fretting about it, and just let them do their job.

But I wonder, have others of you faced a similar situation, and if so, what did you do to help your child dream and wish for something special?

Special Exposure Wednesday

My fuzzy babies are appearing - the first little peaches of the season! Thanks for the picture, Chip! (The picture is even better if you click on it and see the enlarged version.)



Make sure to check out all the other Special Exposure Wednesday shots at 5 Minutes for Special Needs, and then stop back by that site at 4pm for my weekly post!

Just Not Fair

Now I understand why people are reluctant to go to the doctor. If you don't go, you can't hear bad news. It's a wonderful form of denial.

Ronnie had his second visit with his urologist this afternoon. The news is not good, and surgery has been suggested - tough surgery - stay in the hospital at least 10 days surgery.

My stomach has been in knots since hearing the news. I can't eat, and I probably won't be able to sleep.

I need to process everything I heard today, and then I will share more with you all. Until then, I sure would appreciate your good thoughts and your prayers.

A Virtue

Pretty much everything we do as a family takes a long time.

When we decide to go out, we have to start getting ready at least 30 minutes before we need to leave. Backpacks need to be packed - medicine needs to be packaged - trips to the bathroom need to be made - extra food needs to be brought - and 'diversions' need to be remembered. I feel like we are being spontaneous if we get out of the house in under 20 minutes.

Getting two children in wheelchairs into our vehicle takes a while also. Then making sure everyone is buckled in and nothing has been forgotten, and we are usually pulling out of the driveway in another 10 minutes.

When we arrive at our destination, we reverse the process - and it takes a while. Chairs unloaded - children loaded - backpacks and other paraphenalia accounted for - there goes another 10 minutes.

But it's when we are leaving a public place - a store or restaurant for example - when our slowness seems to really irritate people. Whether it's the person waiting for our parking spot, or the people whose paths we are blocking with the wheelchair ramp - often they really get annoyed with us.

I've also noticed that annoyance on school mornings when the bus arrives. As with our vehicle, lowering the wheelchair ramp, backing Ronnie's wheelchair onto it, making sure the safety strap is in place, then raising the ramp into the bus takes a few minutes. After Ronnie is on the bus, then it is Ashley's turn to walk to the front of the bus and board via the steps. She can't board the bus until Ronnie is on because the bus aide must be there to assist her up.

There are usually 3-4 cars stacked up in either direction waiting for the bus to turn off the flashing red lights, and I can read the impatience on the driver's faces. Sometimes a driver will get so impatient that they will turn their car around and take another route.

Why the annoyance? Why the impatience? I really don't try to go slowly - it's just the way things are for my family. And really, is an extra five minutes such a burden to others?

Who's Right?

Have you seen this news story?

Emma is 8 years old, and her parents are not married. Emma is deaf, as is her father, but Emma also has cochlear implants. Emma's mother has taken Emma's father to court, hoping that the court will force the dad to make Emma use her implants when she visits him. Currently, both Emma and her father communicate via sign language.

Emma's mom, in court documents "has stressed the importance of wearing the devices at all times for continued progress with her hearing and speech."

Emma's father said, "I’m willing to have her do whatever makes her comfortable. I want to give my daughter her own choices in life."

Emma, when she is with her father, says she wants to "be deaf like daddy."

How would you handle this situation? I don't believe there is a right or wrong answer, but I wonder what the court will ultimately decide. I know that for me and my deaf children, being deaf is not a disability.

I am not a proponent of cochlear implants for my children, but I do not judge parents who make that choice for their children. When I feel my children can make their own decisions about cochlear implants, I will do whatever I can to support those decisions.

What are your thoughts?

Denise Comes Home

I brought Denise home yesterday. She is 10 years old and is quite the character. I think she will fit into this family very well!
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No, I didn't adopt another child. Denise is our new (used) van!

Back in March I wrote about the wonderful deal I was getting on a used van. The Tate family, truly special people, made it possible for me to have a van for transporting Ronnie. I've named the van Denise after my social worker. Denise - the social worker not the van - was instrumental in getting our local newspaper to do a story on Ronnie's homecoming, and that is what precipitated the offer of Denise - the van not the social worker.

So, say hello to Denise the van:

Special Exposure Wednesday

My first ever Mother's Day present from Ronnie...



Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs, and then stop back by that site at 4pm today to see my weekly post.

A Butterfly Emerges

Today was an important day for my daughter, Jessica. Today Jessica's team and I decided that she no longer needs the services of a behavioral therapist.

In 2007 I wrote about Jessica's Reactive Attachment Disorder diagnosis. And later that year, I wrote about Jessica's team adopting the Positive Behavioral Supports approach to helping her learn to manage her aggressive tendencies.

Today I am so very happy to report that Jessica is maturing into a fine young woman, and she, her team and I feel she will be just fine without the behavior specialist that has helped her for the last three years.

In June, Jessica will be moving to an adult group home. She will be starting volunteer work, and she will work with our state's Department of Rehabilitative Services to find a job that she likes.

The early years of Jessica's adoption were so very difficult for everyone - her school, her daycare, and most especially her family. Jessica broke two of my ribs during one of her rages. She hit a child in a wheelchair so hard one time that she knocked the child and the wheelchair over. She also threw a rock into the back of another child's head. And these are just a few examples of what could happen during her rages.

But today I hope that families who might be going through the same difficult times will look at Jessica and realize that there is hope. Learning to control anger has not been easy for Jessica. Learning to get along and build relationships with people has been a struggle. Having hope and a vision for the future has also been difficult. But she is doing it...

I have always been proud to call her my daughter, but never more than I am today.

I love you, Jessica.

The Need For Speed

Everytime a family rides past our house on their bikes, Ronnie looks longingly at them. When we passed a bicycle display at Target, he got a sad look on his face.

But then we saw a commercial on TV for the Razor Go-Cart. It's electric and does not require the use of the rider's legs or feet. The throttle, the steering and the brake are all hand-controlled. And, it's so low to the ground that Ronnie won't be able to tip over and fall out.

He got so excited the first time he saw it on TV, and then every subsequent time, he would sign "I love that"! So how could I refuse when my 19 year old son, Chip, found out that Toys R Us had one in stock.

We took Ronnie to the store to make sure the Razor was the right size for him, and it was. In fact, the specs say a person up to 140 pounds can ride. Ronnie is slightly less than 100 pounds. He scooted out of his wheelchair and climbed into the Razor. The store could have turned off all their lights because Ronnie's smile lit up the world!

And of course, we had to have to coolest helmet and the blue mirror sunglasses to complete to look!