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...

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 (walternickerson.smugmug.com)

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!

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!

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!

I Love This Family!

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

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!

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!