Friday, December 31, 2010


The use of IPads is exploding in the disability community. Almost every blog of a parent of a special needs child is talking about wanting one - getting one - using one. It's really amazing the impact the device is having on our day-to-day lives.

Yesterday, I found an article about yet another app for the IPad and IPhone that is designed to benefit people with disabilities. It's a communication app called Verbal Victor. Pictures are paired with recorded words, phrases or sentences and the IPad/IPhone can then be used as a communication device. And the best thing - Verbal Victor costs only $10!

I remember many years ago when I was exploring communication devices for Ashley. She rejected every single one we tested because they were too bulky, too cumbersome, and she just didn't want to be bothered. I bet if the IPad had been available then, she would have liked it. Verbal Victor will be available next week, and you can bet we will be giving it a try!

Have you found apps that you, your child or your family member with disabilities really likes? If so, please share...

Thursday, December 30, 2010

Well On His Way

Chip has always done things on his time schedule. He ignored rules such as when he was supposed to start walking as a child - he started at 8 months and I was thinking I would have at least a year before I had to start chasing him. He learned to talk when he was good and ready and had something to say. He didn't let peer pressure influence any of his actions in either middle school or high school. Although he did get his learner's permit when all his same-age peers were getting theirs, he felt no pressure to get his license or even start driving. And I have never had any worries that he would be influenced to experiment with cigarettes, alcohol or drugs.

Chip has also been an excellent money manager since he first learned what money was. Once he started working, he followed the advice so many others don't - pay yourself first. He always has a reasonable balance in his savings account, and he obsessively researches almost every purchase.

So once he finally did decide he was ready to get his license and drive, he was in a great position for purchasing a vehicle. As always, he did his research, and he approached the salesman at the car dealership armed with the price he intended to pay. The salesman, the dealership manager, and the financial manager kept commenting on how prepared he was, how impressed they were, and how they wish their 20 year olds were more like him. Oh, and he did get the price he wanted plus a few other perks thrown in also.

So, at barely 20 years old, a full-time student in college (maintaining Dean's List status), and working full-time, Chip purchased his first car! Needless to say, I am very proud of my boy!!

Wednesday, December 29, 2010

Special Exposure Wednesday

I took all the kids bowling Tuesday, and Ronnie decided he no longer wanted to use the ramp for releasing his ball. Since he uses a wheelchair, the logical bowling choice is to use a ramp. But Ronnie wanted Chip to push him the chair while he released the ball like a person not in a wheelchair would do.

The first attempt went pretty well....

The second attempt had the ball in the the lane one over from ours!

But all in all, Ronnie was very proud of himself!

Be sure to visit all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Monday, December 27, 2010

Dang you, Mother Nature

The clothes were folded and stacked just waiting to go into the suitcases.

The travel size toiletries were bought and awaiting packing also.

Movies were stored in a binder to save space in our vehicle.

My gas-hog van was filled to the brim at only 6 cents per gallon thanks to my grocery store fuel perks card! $1.18 for 20 gallons a gas - not bad :)

The Christmas decorations were stored away so when we returned from vacation we wouldn't be facing that task. We were all excited about the prospect of a huge, handicapped accessible house on the beach in North Carolina, and then.....

Mother Nature struck with a fury. A huge snowstorm - epic was the word used by the newscasters - struck in an area that more often than not never sees snow and all roads leading to the beach were, and still are, unpassible.

(Photo courtesy of Carl Anderson, Hampton Roads Photography)

Thank goodness I had trip insurance. I won't lose any money, but I will lose a week away from work and the other stressors of our life. The vacation we couldn't take last summer due to Ronnie's surgery was not to be during Christmas vacation either.

Mother Nature can be a real b*tch sometimes...

Friday, December 24, 2010

Merry Christmas Eve!

Remember earlier this month I posted a picture of our Christmas card preparation? Ronnie was chosen as this year's victim poster kid. So here is the finished product that adorned our Christmas cards! Absolutely one of the best "presents" I have ever received!

Hope everyone has a wonderful holiday full of joy, smiles, warmth, and hope for the future.

Happy holidays, my friends!

Thursday, December 23, 2010

Making Deals

Breaks from the routine of school are tough for kids who thrive with routines. My kids are no exception to that. When you throw in cancelled physical therapy sessions, basketball games put on hold, and limited contact with the school mates you adore, some kids (e.g. Ronnie!) can get a bit cranky.

My solution - bribery!

For example, Ronnie does not want to continue to practice his physical therapy skills when he isn't going to have to deal with the weekly wrath of his therapist. But he still needs to practice standing with his new crutches and he still needs to work on stretching his back muscles so standing comes easier.

Here's the deal we worked out. For every 30 minutes of physical therapy practice, he gets 60 minutes of video game play.

So far it's working. What are your strategies to keep your kids on track during long school breaks?

Wednesday, December 22, 2010

Special Exposure Wednesday

How did your children spend the first day of their Winter Break from school? Mine made seven dozen cookies! I love these kids!

Be sure to visit the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Tuesday, December 21, 2010

Slip Sliding Away

I need your help. This is the first year that we have had our wheelchair ramp and really needed to use it. It is Ronnie's only access into the house.

Last week, we had our first snow. I was dreading it - not because I don't like snow - I really love snow - but I knew that the ramp was going to be an issue. And sure enough, it was.

So here's where I need the help. What do others of you that have ramps do when the ramps get snowy or icy?

Our ramp is made of wood - decking material - and when it gets icy, it gets really really slippery. When we get even an inch of snow, Ronnie's chair won't plow through it. I know we can use the ice melt crystals, but I do worry about the environmental impact of that. I used ice melt last Winter on my front porch and steps, and it took the paint off!

We do have the non-slip strips of sandpaper like stuff on every third plank going down the ramp, but they just seem to get as icy or as snow covered as the rest of the ramp. Any ideas???

(The picture above is not of our ramp, but our ramp is similar. It's about the same angle of descent, and the non-slip strips are similar.)

Monday, December 20, 2010

Good News for Isla - Great News for the Rest of Us!

Friday I wrote about wanting to bottle the Christmas spirit of love, joy and peace and making it available all year long. So imagine my surprise when my brother emailed me about a wonderful blog titled "Good News For Isla." Isla's Mom has decided to document her journey to find a good story, person, event, or charity every day for a year. She is currently on day #66.

In the first post Isla's Mom wrote for the blog, all is explained:

I'm not a blogger, or really anyone who has ever wanted to have a diary or written narrative with which to hassle. But I feel confronted nearly each day when I turn on the news, radio, or glance at the internet, and see one sad story after another. Our world is clearly imperfect. We humans are definitely not making it easy on ourselves. Living, though, in this constant state of despair only creates and fosters fear. Fear of people, nature, the unknown, and life as we know it.

I am a mother now, and fear is not the legacy I want to leave my daughter. It is a choice that I (and my husband) have to make, and somehow we have to figure out how to not shelter her from reality, but to also instill in her a sense of hope. Not only do I want her to know of the good news that is currently happening in her first year or so of life, but I also have this intense desire to expose myself to good news. I need to have my hope restored. Merriam-Webster defines interrupt as "to break the uniformity or continuity of," and that is clearly what my life and thought process needs. To be interrupted. I need this interruption, to remember that there is good in this world. So that I in turn can instill this hope in her.

So, this blog is born. As a means to document my journey to find a positive story, event, person, or charity each day for a year. My wish is that some day my daughter will be able to look back and see that amazing events and people filled the days at the start of her life, and that goodness and hope continues as she grows older.

This daily good news is EXACTLY what I need, and I bet most of you will enjoy it also. I urge you to visit and visit often! And thank you, Isla's Mom!!!

Friday, December 17, 2010

An Always Holiday Spirit

A lot of people seem nicer during the Christmas season. Not everyone, of course. There are still those folks who are impatient standing in long lines or angry because you took the parking space they believed was reserved for them. But I have noticed more smiles, more "Have a great holiday!", and more considerate comments to the salespeople and service workers.

I'm glad to see it during Christmas, but I really wish I saw it more all year long.

I know that we all get impatient, get angry, and just have bad days. But it's more of the blah days I wish we could overcome. I know it's early for New Year's resolutions, but I want to thank more people in the future. I want to smile at strangers more often. I want to slow down and enjoy the life that surrounds me not just the life I have programmed for myself and my family.

I want more people to say, "What a nice person" instead of "What a b*tch." I want my children to learn to be more thankful and less expecting. I want my whole family to notice sunsets more often and comment on lovely flowers more often. I want my children to rush to help someone, not rush to criticize or complain.

I just want to bottle this Christmas spirit and let it out in dribs and drabs all year long. And if someone runs out of the Christmas spirit, say around March or April, I want them to be able to go to the Christmas Spirit store and get some more - free of charge, of course!

Tonight, this Friday of no particular importance, I will pray for more peace, more respect and consideration, more happiness, and more joy. Will you join me?

Thursday, December 16, 2010

I Can't Sing

I can’t sing. I know that because my third grade teacher assigned me a solo for the chorus recital, and then rescinded her offer after hearing me. I also know because my 8th grade chorus teacher gave me an ‘F’ on my report card. Throughout my entire elementary, middle and high school career, I had straight A’s except for that one F. Obviously, I could not sing.

I’ve heard the can’t word a lot of other times in my life. And I’ve heard the not-good-enough phrase more times than I feel I should have. I’m not sure why I kept hearing those things. Surely all the folks in my life sphere couldn’t be conspiring to knock down my self esteem, but it was indeed knocked down. My response to all those people was to prove them wrong (remember those straight A’s?).

I’ve spent my life proving naysayers wrong because I feel like I have to. I was told, “You can’t be a police officer.” Oh yea, watch me. “You can’t be a parent because you are not a good enough wife.” Oh yea, watch me. “You can’t do that job, or complete that, or succeed at …..” Oh yea, watch me.

Yes, I did and continue to prove the naysayers wrong, but it’s exhausting and takes a high toll on one’s self esteem in the process. I don’t want my children to travel that same path.

I refuse to let people talk about what my children can’t do – whether those people are doctors, teachers, family or friends. I refuse to let anyone say that my children are not good enough, and if anyone doubts that, I dare them to say it to me.

I want my children to grow up knowing they are unique and capable and loved, not for what they can or can’t physically do, but just for the people they are.

So, if I could only give one gift to my children this Christmas it would be the knowledge that they are now and always will be good enough and that they can do anything they want to do, regardless of what anyone says. My goal is to surround my children with people who believe as I do.

So, if you have been asked to leave our circle of friends – if I have asked for a new professional to take your place – if you feel us withdrawing from you – now you know the reason why.

Oh, and my children have never complained about my singing – especially the deaf ones :)

Wednesday, December 15, 2010

Special Exposure Wednesday

And so it begins...Welcome Winter!

Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Tuesday, December 14, 2010

Seizing Less

Something strange is going on with Ashley’s seizures – I’m seeing fewer of them. And to make it even stranger, I have stopped one of her seizure medications.

Ashley currently takes 3 seizure medications – Depakene, Keppra and Trileptal. A couple of months ago, I weaned her off Topamax at the direction of her neurologist. He wanted to replace the Topamax with a new seizure medication named Vimpat. Ashley tried the Vimpat, but the side effects were horrible, and I stopped giving it to her. I haven’t told the neurologist about that yet.

But just in the last couple of weeks, she is down from 6-8 seizures a day to 1, maybe 2, and they are of shorter duration and less intensity. The only difference in her meds besides stopping the Vimpat is that she has also been on Augmentin for an ear infection. Augmentin is a common addition to her medicine regime, so I can’t attribute the fewer seizures to that.

I just don’t understand it – but I am thrilled! Ashley seems happier, more carefree, and definitely less groggy from medication.

Has anyone else experienced this? Has stopping a medication or taking fewer medications actually brought a reduction in seizures? Might it just be a change in her body chemisty/hormones as she matures?

Monday, December 13, 2010

Rock Stars!

There was no way that the end of season wheelchair basketball party could be held at some wimpy place like Fuddruckers. No, these were wheelchair warriors we were celebrating - kids with trachs, some with crutches, most with wheelchairs - kids whose basketball game resembled a rugby game more often than not.

So, kudos to the folks at Sportable for organizing a rock climbing event to celebrate, and a special thanks to the staff at Peak Experiences for making dreams come true! Most people would have thought that kids with non-functioning legs wouldn't be able to climb a rock wall. Most people would be wrong! Check out these pictures...

This is Ronnie, almost at the top of a two story rock wall!

My son, Chip, was the belayer for Ronnie.

Here's one of Ronnie's teammates making the climb!

And another teammate...

And Ronnie wasn't satisfied with the two story wall - he had to master the three story wall also!!!

And finally, here's a shot of the two walls the boys climbed. I wanted to just put into perspective how tall these walls were! Way to go, Guys!!!

Friday, December 10, 2010

Avoiding The Holiday Meltdowns

Routine driven – obsessive compulsive – anal retentive…

Because my life and my family’s life is so dependent on routines, those adjectives are always applied to me. I don’t really mind because I have found over the last 15 or so years that predictable routines do help my children with special needs cope.

We get up at the same time each day. Breakfast, though not the same thing each day, does follow a predictable rotation. We follow a strict dinner, bath time and bed time schedule. We even run weekend errands at the same time each Saturday.

It works because it’s predictable – because there aren’t too many surprises for my children.

It works – except when it doesn’t. And the holidays are one of those times when it doesn’t. It’s very difficult to adhere to our routines when there are Christmas parties to attend, shopping to complete, and visits from relatives and friends. So, what do I do to make sure that the meltdowns are kept to a minimum when the unexpected becomes commonplace?

I try to insert some of the unexpected during other times of the year. I try to explain and give warnings about holiday events and how our routines may change. I try to find some extra downtime when events consume a large part of our days.

And so far, I have been pretty successful.

Ashley, the child most affected by a change in the predictable, has learned to find a quiet place and spend some time alone if her environment is getting too crazy. And with her, I try very hard to make sure she stays healthy during the holiday. Nothing makes an unpredictable routine even more difficult than being sick at the same time.

I feel like I need more tools in my toolbox though. What do you do with your children during the holidays to keep their stress levels manageable? Please share!

Thursday, December 9, 2010

A Full Dance Card

First there was the wheelchair. The chair and Ronnie were one.
Then came a newer, sportier wheelchair - one that is great for wheelies and sharp turns.
Hip to foot braces and a walker were next. Ronnie learned to walk upright for the first time ever, and won the crowd over at his adoption ceremony.
Now? Crutches - bright, shiny new black crutches. While Ronnie has several month of lessons and practice ahead of him, last night he took his first tentative step. It was a tiny step, and the physical therapist was holding him up with a gate belt, but it was a step nonetheless.
I predict dancing at the prom won't be far behind!

Wednesday, December 8, 2010

Special Exposure Wednesday


Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Tuesday, December 7, 2010

HIPP for Kids - Money for Parents!

My state Medicaid organization has done their best to keep a secret, a secret about a program that will reimburse parents for some or all of an enrollee’s share of employer sponsored group health insurance premiums. But now the word’s out, and I bet your state has a similar program. And trust me, this program could put an extra couple of hundred dollars in your pocket each month!

The program is call HIPP (Health Insurance Premium Payment). My state also has a HIPP For Kids program that makes a family eligible if their Medicaid-covered child is under the age of 19. Here’s the blurb from my state’s website – “For the HIPP For Kids program, the Medicaid eligible must be under the age of 19, the employer must contribute at least 40% towards the cost of the health insurance premium, must offer qualified employer-sponsored health plan that qualifies as creditable coverage under the section 2701(c)(1) of the Public Health Service Act and must be offered to all individuals in a manner that would be considered nondiscriminatory eligibility. “

So, from a practical standpoint, how does this work. First, you must be covered by your employer’s health insurance program – you must have a child covered by Medicaid (and it can be secondary coverage – i.e. your insurance pays first, and then Medicaid pays).

You fill out an application – it should be on your state’s website page. The application for my state was very simple. It had some basic information about my family, and there was also a section that your employer fills out. In my state, a decision must be rendered within 45 days of the original application, and I’m betting it’s the same in your state.

Once you get the approval letter, you then have to send in copies of your pay stub showing what you paid each month for your employer sponsored health insurance. In my case, my portion of my health insurance premium payment is $220. So each month, if I send in my pay stubs, I get $220.

Easy peasy, and who couldn’t use some extra money. Heck, in my state, I am even provided envelopes for sending in my pay stubs, and I don’t have to stamp them!

Check it out!

Monday, December 6, 2010

Robert Latimer, Murderer

On October 24, 1993, Canadian farmer Robert Latimer decided it was time to kill his twelve-year old daughter. Tracy had cerebral palsy; she had undergone three successful surgeries to improve her quality of life. A fourth surgery was planned to ease pain from a dislocated hip. Despite the remarkable success of previous surgeries, her parents were horrified at the prospect of the fourth, and Robert Latimer decided to take matters into his own hands.

Robert Latimer planned his daughter's murder for close to two weeks. He considered administering a drug overdose, or shooting Tracy in the head, but he finally settled on gassing her to death. On a bright sunny Sunday his wife, Laura, and their other children went to church, leaving Tracy at home with Robert. He murdered her with exhaust fumes from his truck.

He took Tracy's limp body, reeking of exhaust fumes, back to the farmhouse and put it in her bed (as though sleeping) for Laura or one of their other children to find when they got home. Everything worked according to plan: Laura discovered the corpse after coming home and preparing lunch. She cried that something was wrong with Tracy and called to her husband to phone for help. Robert called the Royal Canadian Mounted Police (RCMP), telling them Tracy had died in her sleep.

Robert Latimer was convicted in 1994 for second degree murder of his daughter.

Canada's National Parole Board has released the details of two special conditions its members set in granting the 57-year-old's Latimer's release from prison last week - Latimer must not have responsibility for, or make decisions for, any individuals who have a significant disability, and he must continue to participate in one-to-one psychological counselling.

Has justice been served? Absolutely not...

Friday, December 3, 2010

Your Magic Wand

What would you do if you had a magic wand? Would you make changes for your children with disabilities? Yourself? Other members of your family? Or would you use it to help those outside your family – doctors, therapists, neighbors, extended family, friends – understand and accept your children with disabilities?

I think most people outside the sphere of disability would immediately think we would use the magic wand to ‘cure’ or ‘fix’ our child with a disability. My co-workers, for instance, would be sure I would wave the wand and make Ashley see and hear, or Ronnie hear, or Jessica stop her raging behaviors. Well, other than Jessica’s raging behaviors, I wouldn’t use my wand to change my children – unless they asked me to.

I love my children exactly the way they are. If they preferred to have their disability taken away, then most certainly I would use my wand for that. But it wouldn’t mean they would be any ‘better’ in my eyes. They are perfect already.

I believe I would use my wand to make their lives and my life a little easier. I would wish that we would all not catch so many colds and get so many infections. I would wave it before walking into a doctor’s office. My wand would go shopping with us to stop the stares and rude comments. And of course I would use it to instill a belief in their teachers’ minds that they were capable and worthy of an appropriate education.

I might use it to help Ashley sleep a little better at night, and to get things done around my house to make it easier for Ashley’s and Ronnie’s wheelchairs to get around. Then of course, I could use it to make the grass and landscaping in my yard always look perfect!

Having a magic wand would indeed be fun for a while. How about you? How would a magic wand help you?

Thursday, December 2, 2010

How About Some Cheese with that Whine?

I go back and forth on what the most difficult situation is as a single parent – at least when it comes to illness.

Is it worse when my kids are sick and I am well? Or when I am sick and the kids are well? Or when we are all sick?

My view might shift based on which situation I find myself in at the moment, but I really think the hardest for me is when I am sick and the kids are well. Single moms don’t get to call out sick and not show up for work. At my paying job, my co-workers can fill in for me until I recover, but there’s no fill-in for my Mom job.

This week, I am sick. I have a sinus infection – one of the worst in my recent memory – one that borders on flu-like symptoms. When I get sick like this, I am unable to take my rheumatoid arthritis medicine. So, on top of the sinus infection, my joints scream in pain with every move.

I know – whine, whine, whine. But just every so often, don’t I deserve to whine?

I am very blessed that some of my children are able to take over some of the tasks like meal preparation and straightening the house. But, there is no one, and I wouldn’t ask my children, to get up the 3 or 4 times a night that Ashley wakes – or to make sure everyone gets to the doctor and therapy appointments – or to make sure there is adequate and healthy food in the house.

Fortunately, my doctors understand my situation, and are aggressive in their treatment options. My antibiotics are starting to work now, and I am climbing back out of the abyss of sickness. Which is a good thing because we have a vacation planned soon, and I really really need one.

What about you? How do you handle the sick times in your family?

Wednesday, December 1, 2010

Special Exposure Wednesday

Each year, I choose one of my children to grace our family Christmas card. This year's victim/child is Ronnie! I can't show you the completed card just yet, but I can show you a picture from the card preparation shot!

He's probably starting to wonder what kind of crazy family he has joined!

Be sure to visit all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!