Thursday, January 31, 2013

Respite Care Voucher Program

Virginians who care for a loved one with disabilities or chronic conditions can apply for up to a $400 reimbursement for respite care under a new voucher program administered by the Department of Aging and Rehabilitative Services. The application period began on January 29th and runs through July 31st or until funds run out. The Lifespan Respite Voucher Program can provide funds for costs of in-home care or care in a center, nursing home or assisted living facility to give caregivers a short-term break from caregiving duties.

Don't let the name of the agency administering this grant from the Federal government confuse you. This is not intended only for the care of elderly family members, but for children and young adults also. And, this program exists in other states, not just Virginia. Google Lifespan Respite Voucher and your state, and you can find information and forms for wherever you may live.

Check the rules, but if you qualify, apply as soon as possible. Funds for this program usually run out before the needs do.

ATM: Knowing your children care enough for each other to always be there...

Wednesday, January 30, 2013

Special Exposure Wednesday

Go Sportable Spokes! Congratulations on your 'Hog Wild' tournament win in North Carolina this past weekend! And a very special thanks to Chip Nickerson for all the GREAT pictures (

ATM: The way Ashley skipped off the bus this afternoon, loving that she didn't have to wear a coat. It was 65 degrees here today!

Tuesday, January 29, 2013

Tell Me How

Articles like the one I read today pop up frequently on Facebook. They are usually shared by other parents of children with special needs, or by people who worry about those parents. The articles offer important tips about taking care of yourself so you can take care of others. Unfortunately, most of the ones I have read offer no practical methods for implementing their strategies. Here's what I mean...

The most recent article I read stated that "Respite is a must for family caregivers", and it shared the advice of finding someone - family, friends, volunteers, professional caregivers - to help parents like me be able to 'recharge'. That's the first problem I have - tell me how to find those people to help me. I have no family in the area. My friends either are in the same situation as I, or they would clutch their heart in fear if I asked them to spend an afternoon with my medically fragile children. Volunteers - ha, ha, ha! And then there are the professional caregivers. They should be people you trust, people who would react appropriately in a medical emergency, people who truly care about your children. Unfortunately, I've not had a lot of luck finding such people unless I pay through the nose (which I can't do anyway).

But should a parent be able to find respite, the article suggested using that time for the following:
  • Take a break. Take a day or even a week's vacation. Read a book you haven't been able to get to and take naps. Really - a week's vacation. What dream world was the article's author living in?
  • Eat well. Plenty of fruits, vegetables and proteins. Oh, you mean eating the scraps of my children's meals isn't enough? Or the cereal I have for dinner because I am too tired to make a meal?
  • Keep your medical appointments. After I have taken my work vacation time to get my children to their dozens of medical appointments, do you suggest I take leave without pay to get to mine? Oh wait, when I find a volunteer to help with the children, then I'll be able to see the doctor!
  • Indulge. Treat yourself to a foot massage, manicure, nice dinner out, or a concert. Sorry, indulging to me means getting in bed before midnight.
  • Work out. Yea, that's right, that's exactly what I want to do after all the lifting, repositioning, bathing, and wrestling with my children.
  • Meditate. Sit still and breathe deeply with your mind as quiet as possible when you feel overwhelmed. ROFL, ROLF, ROFL.....

I know the authors of articles such as this mean well. And, I know their suggestions are good ones and things I really need to do. But the reality is that it is impossible most of the time. I would love nothing more than a night out, a movie in a theatre and not on TV, a meal where I am not feeding someone else and can actually remember what I ate. I'm not much for massages and manicures, but a nap would be heaven.

I wouldn't trade my life with my children for anything in the world. Their hearts are joined to mine and always will be, and I will always do everything in my power to ensure their health and happiness. But I do think that the people who insist I must care for myself first need to come spend their week's vacation with me and my family - just in the interest of a reality check.

ATM: When Chip pointed out that the sky was orange and blue the morning of Ronnie's basketball tournament. Orange and blue are the team colors!

Monday, January 28, 2013

Not a Hospital

This past weekend we drove to North Carolina for a wheelchair basketball tournament. The tournament was held in Smithfield, NC, and included several North Carolina teams in addition to our team from Virginia. The facility used for the tournament was the Smithfield Recreation and Aquatic Center.

Besides two basketball courts, the Center has a beautiful pool, several workout rooms, and an indoor track. It works out beautifully for these annual tournaments because there is also a kitchen and a large room for providing meals for the athletes. And, it also serves as a birthday party destination for children in the Smithfield area. There were, in fact, two parties going on during the tournament.

As one mother and her two daughters were headed down the hall next to the basketball courts in search of their birthday party room, the youngest of the two daughters asked her mother, "Mommy, is this a hospital?" The mother said, "No, why do you think that?" And the young girl replied, "cause of all the wheelchairs."

I understand why the child might have thought it was a hospital, but it made me a little bit sad. Sad because the only place she thought she would see lots of people in wheelchairs would be a hospital.

Wheelchair sports need to be so commonplace that even young children won't find the sight of many people in chairs so unusual. And even beyond that, wouldn't it be lovely if wheelchairs, crutches, walkers, etc were all so commonplace and expected in all aspects of society that never again would a small child ask her mother such a question as the young girl at the Recreation Center did.

ATM: The concentration and determination on the face of every wheelchair athlete at the basketball tournament!

Friday, January 25, 2013

I Love This Family!

ATM: The way Ashley's face lit up when she felt the snow crunching under her feet this morning!

Thursday, January 24, 2013

Hair Hell

From the time I brought Ashley home at age 2, she has been sensory defensive. When she was much younger, the only time I could get her fingernails trimmed was when she was under anesthesia. Unfortunately, she was under anesthesia a lot those years.

After help from our local Children's Hospital and the use of a brushing program, Ashley's sensory defensiveness did get better. Bu two things areas of defensiveness still remain - her head and her feet.

Ashley will only wear one kind of shoe - Converse hi-tops. Not the low ones, not another brand. And, she is happiest when they are made of canvas and not the specialty fabrics I sometimes buy her because I like the shoes. She also does not like hats. She will keep one on if it is bitterly cold outside and I am sitting right next to her. But, for example, the minute her school bus pulls out of sight, the hat comes off. She also will not tolerate any clips or hairbands, and blow drying her hair is my daily aerobic activity.

So you can imagine that hair cuts don't usually go well.

We are in a place that is not especially familiar, with people who are not familiar, with lots of strange smells and noises, and then someone wants to put a cape around you. Ashley's haircuts do not happen with a cape on. It's just too much for her.

The haircuts themselves usually happen but only because I hold her and do my best to distract her. But I don't do a very good job at that. The resulting haircut is not perfect, but at least it looks a little less wild and crazy.

Then we get to do it all over again in about 6 weeks!

Ashley's hair is very thick, shiny and wavy. She wanted to try growing it out once but the result of completely ummanageable. So, she keeps it very short and even has it thinned out. But that just means we have to visit the salon more often.

I'm still hopeful one day that she will be able to get a hair cut without trauma, but if anyone has any suggestions, I would love to hear them!

ATM: How nice it was that my blood pressure was right where it is supposed to be during my doctor's visit today!

Wednesday, January 23, 2013

Special Exposure Wednesday

The weather forecasters were giddy with the excitement of impending snow. Schools began cancelling classes before the first flake fell. But the storm fizzled, and what snow did fall was gone in 24 hours. Cooper, however, was still able to find a snowball or two!

ATM: How dressed up and professional Chip looked heading out for his first day of internship!

Tuesday, January 22, 2013

Their Infinite Wisdom

Way back last October, Ashley's leg and foot began to swell. It wasn't an injury but it was a mystery.

The doctor first thought it might be a blood clot, but it wasn't. Then the doctor (a new doctor) thought it might be scurvy, a vitamin C deficiency, but it wasn't. The mystery persists...

Back in December, the doctor ordered a cat scan of Ashley's leg and foot, a scan that would have to be done under anesthesia. Virginia Medicaid, Ashley's insurance, denied the procedure as not medically necessary. Thinking perhaps the request was not written correctly, the doctor tried again. After discussion with vascular specialists, the doctor requested an MRI under anesthesia.

Again, Medicaid has denied the procedure as not medically necessary.

Ashley gets very upset whenever we pull into the hospital parking lot. She is beyond anxious as we check in and head to the imaging department. When they ask her to get on the stretcher for the procedure, she loses it. She is adult-sized now. She is exceptionally strong. I cannot persuade or physically move her to the stretcher. Four burly men can but they often get injured in the process. And getting her to lie still after all that is impossible, and I don't say too many things are impossible in life. But that is.

So, infinitely wise Medicaid, what do you suggest we do now? Do we just accept the leg and foot swelling and wait until things get worse and become an emergency? Since you feel the procedures two different doctors have ordered are not medically necessary, would you mind telling all of us what can be done?

Since Ashley is nothing more than words on a computer screen to you, would you like to discuss this issue? Would you like to accompany us to the imaging facility and watch while we try to get the scans?

I didn't think so...

ATM: The way Ashley patted my back when she could tell I wasn't feeling well!

Friday, January 18, 2013

Conner and Cayden

Conner and Cayden are two very special young men. Watch this video and I am sure you will agree. Just make sure you have your hanky handy!

Sports Illustrated Sports Kids of the Year

ATM: Knowing school is cancelled due to snow and everyone gets to sleep a little longer in the morning!

Thursday, January 17, 2013

One Bad Mother .......

Do you ever feel like you're no longer a 'mother' and all that is left is 'mutha'?

Do you have days where you feel like paying for a babysitter and a hotel room for your kids while you stay home, sip wine and watch Lifetime Movie Network all night long?

Days when the cook in you would be happy with pop tarts for dinner, or the maid in you no longer sees the dust or how big the laundry pile is getting? Days when the nurse in you has wiped a month's worth of snot and it is only the 10th day of the month? Days when the chauffeur in you lies and says all the tires are flat on the family limousine, or the tutor in you says, "Just as long as you pass".

Days when the event planner is all out of events, the laundress develops a new rash when around laundry soap, or the finder of all things lost in the house loses herself?

If so, what do you do? How do you recharge and rediscover your momentum and desire to be the best mother in the world, or at least in your children's eyes? What are your secrets?

I need to know.

ATM: Ronnie's sparkly eyes when I told him this morning that snow was in the forecast!

Wednesday, January 16, 2013

Special Exposure Wednesday

This dog of mine - he loves playing in the pool at doggie daycare - he loves playing in just puddles of water - but put him out in the rain, and he turns into a big baby who won't even leave the porch.

ATM: Chip was pretending to zoom a lego plane at Ashley yesterday, and she was laughing so hard she fell over!

Tuesday, January 15, 2013

Just for Fun

It's a dark, rainy, cold day today, so I thought a little foolishness might be in order! Enjoy!

ATM: Yesterday's sunrise rainbow - I've never seen anything like that before.

Monday, January 14, 2013

A Little of This and a Little of That

I don't remember which Miss America contestant it was. All the beautiful, skinny, skimpily-dressed women starting running together eventually. But, for the contestant who said she enjoyed supporting Miracle League and all the children 'confined to wheelchairs', please do a little research on disability etiquette before your next pageant.


As a parent of a child with disabilities, especially disabilities that might involve a lack of social awareness, do you offer explanations or excuses for your child in public? For example, if you were visiting Disney World and your child with Autism ran up to one of the character actors and starting talking gibberish and acting in a very excited manner, would you say to the character, "my child has autism"? Or do you wait for people to ask you why your child is different, or do you just go about your business and enjoy your family time?


My child doesn't have scurvy, unfortunately. I know that sounds strange, but I was hoping for that diagnosis because it is easy to fix the associated problems. Ashley has been on high dose vitamin C treatment for a month, and the swelling in her right leg, ankle and foot are unchanged. It's back to the drawing board for the doctor...


You are everything you don't believe you are. You are brilliant and insightful. You are handsome and well mannered. You know how to behave in any social situation, and you have a lot to share that most people would be interested in hearing. You are caring and considerate. In short, you are a remarkable human being and I wish I could say something to make you believe that. You know who you are....

ATM: A 65 degree day in the middle of January!

Friday, January 11, 2013

Again and Again

Dear Mr. Bus Driver,

Here we are in January, 4 months after the start of school, and you asked me for the 6th time this morning what you could say to Ashley to make her keep her shoes on during the bus ride to school.

I said, just as I have said the previous 5 times you asked, "Tell her she must keep them on." I could tell by the way you rolled your eyes that you didn't care for my flippant answer. But trust me, you would like flippant much more than all the other emotions I was feeling but not sharing.

I shared a document with you the first day of school and again two weeks after school started that discussed the challenges Ashley faces as well as behaviors you might expect to see on the morning bus ride. I know that Ashley's teacher has also shared information with you on several occasions. So yes, I was surprised and a tad annoyed that you were asking the same questions again.

Ashley has some sensory issues. She doesn't like shoes or hats and left to her own devices will remove those things if possible. But as you and I both know, there are times when she shouldn't remove her shoes and hat - like say when the temperature outside is in the 20's or 30's. When I suggested you tell her she has to keep her shoes on, I also mentioned that because Ashley has deafblindness, you or the aide must speak very loudly if you want her to hear you. Your response, "Oh? She can't hear me?." Again, that information was shared many times in the past.

So now you tell me - what must I do or say to make you understand? It's obvious that the bus aide has no interaction with Ashley whatsoever. So while you are driving the bus, how do you expect her to get the message about not taking her shoes off? You even asked me to tell her before she got on the bus that she must keep them on. Do you have any children, Sir? If so, can you tell them what the rules are and they always follow the rules when they are out of your sight? If so, please share your secrets.

Here's how it should be handled:
  • If the aide sees Ashley start to reach for her shoelaces, he should loudly and firmly tell her no.
  • The aide should then sign STOP, SHOES ON. I know for a fact that the teacher has shared those signs with you.
  • If Ashley keeps trying, keep signing and speaking loudly and firmly to her.
  • If that still doesn't work, give her a magazine or something to busy her hands with. There are always things like that in her backpack, and I know her teacher has shared that with you.

I'll also offer some other advice which I know is none of my business. So, you may just ignore if you like. You need to expect your bus aide to do his job. If he is not doing his job (and obviously he is not), then you need to correct that problem. The ultimate responsiblity for the children on your bus is yours. Personally, I wouldn't want a lazy, good for nothing aide jeopardizing that for me.

Sincerely yours,
Ashley's Mom

ATM: Ronnie's smile when he received his birthday present this morning!

Thursday, January 10, 2013

Our Dance

Think about Stevie Wonder and Ray Charles. As they make beautiful music, they sway side to side. It's a dance almost, a dance that Ashley and I share each and every day.

Because Ashley is deafblind, she often seeks her stimulation through body movement, and one of the movements I see the most is her swaying side to side.

She sways as we wait for the bus in the morning. She sways as we wait to see the doctor. She sways as I help her on with her coat, and she sways as I try to administer her meds through her G-tube.

I find myself matching her rhythm - sway for sway - so imperceptible at first that I don't even notice. It's like a shared music in our brains, and while others may not agree, I think it is beautiful!

Just like Stevie and Ray....

ATM: The sliver of moon through the trees this morning, the sky dark blue on top and golden at the horizon!

Wednesday, January 9, 2013

Special Exposure Wednesday

Ashley got a LOL Elmo for Christmas. But, when he wasn't LOLing, he looked rather sad, or mad, or scared, or something.

So I decided to try to cheer him up....with chocolate.

That didn't seem to be doing the trick. After eating the chocolate, he was back to the sad/mad/scared look.

But then I figured out exactly what would bring his LOL back...

Poor guy. At least we helped him get over that whole Sesame Street debacle.

ATM: The look on Ronnie's face when he ate his first ever piece of sushi, and realized he would live!

Tuesday, January 8, 2013

Universal (good) Healthcare

We, like a lot of you, spend a great deal of time in doctor's offices and at several of our local hospitals.

I noticed something several years ago about all those visits and from it I developed a theory, a theory I put to the test again over our holiday break.

We had several visits to doctor's offices and those offices were connected to our local teaching hospital. That hospital is downtown, in a very urban setting, and it is frequented by many different types of people. There are busy professionals who schedule their doctor appointments for their lunch break. There are people with significant illnesses or injuries who go to the hospital for top-of-their-field specialists, and there are the urban poor - people with no health insurance but people for whom the hospital is obligated to provide service.

So what's my theory? I have found that better service seems to be provided to those people at the high end of society's ladder versus those at the bottom of the ladder.

I tested my theory by going to one appointment dressed very, very casually. I had on sweats - my hair was clean but not styled - I had no makeup on. Then I went to another appointment dressed professionally, styled hair, makeup and jewelry. Other than the physical appearance, I was the same person. I spoke well and considerately. I was polite and smiled both times. But I was treated very differently.

I hope that my theory is wrong. A hospital should be tasked with treating every patient well, not just those that appear to have more money. Working in a hospital setting seems to me to be a very difficult job. One would see patients in pain, patients who are scared, and often patients who are at their worst. But that comes with the job.

What shouldn't come with the job is discriminating based upon appearances or hypothesized differences.

ATM: Having lunch with my son, topped off with a strawberry milkshake!

Monday, January 7, 2013

A Treasured Moment

She's back!!!!

I have spent the last two weeks with family and friends - doing lovely fun things - eating lots of good food - and resting and 'centering' myself. It was a break that I desperately needed. The stressors in my life had grown so large that I wasn't doing well. But now I feel ready to face the world again.

I'm not one to make New Year's resolutions, but this year I wanted to do something, something to extend the peace that I found during the last weeks of the year. I know that once I get back into my work life and the children are back into their school life, things will once again get hectic. I don't think I can change the hectic - it's just the nature of our lives. But I can do something to bring myself back from the edge if life starts zooming out of control again. My project, or resolution, to do that is called 'A Treasured Moment', or ATM for short.

My days are filled with so many touching moments, but it's easy to overlook or forget them when life gets crazy. This year I don't want to forget them. I want to tuck them away and have them to go to whenever I need to find a moment of peace and joy. My goal will be to state each day one treasured moment that I enjoyed that day. It can be something small or something large, but it will be a moment that I want to always remember, a moment that I felt gently touch my heart. I will publish my moment (ATM) at the end of each blog post so that just like when I need cash, I go to my bank's ATM, when I need building up, I will go to my heart's ATM.

Here's wishing all of you a year filled with treasured moments to fill your heart and soul!

ATM - Ashley's giggle from under the covers when I went to get her up this morning!