A TV Solution

Even though Ashley is considered blind, she had a little bit of vision in her right eye. She can focus at about 2 inches. But, even given that, she LOVES to watch television. Her favorite shows are sports, especially basketball, and any show that has babies. She also likes watching the weather during the morning and evening news.

Because of her vision, she must sit directly in front of the television with her good eye just inches away from the screen. We currently have a big old clunker of a tube TV and that has served her well. She can't pull it over by trying to get closer, and even if she is a little rough with it, it's very solid and has taken her abuse for the last 13 years. But we may be coming to the end of that old TV's life.

Now I don't know what to do. Tube TVs aren't sold anymore. Flat screens are all that exist, but flat screens are way more fragile. She could easily pull one over, or damage it. So where do we go from here?

I've thought about trying to find a hutch type cabinet for a flat screen and then somehow rigging up a piece of plexiglass in front of the TV so she can't actually get to the flat screen. But, most hutch type cabinets have the TV up pretty high. Our current TV sits on a stand and Ashley pulls an ottoman up in front which gives her full access to the entire screen. Sitting up higher is not a good option for her since a seizure could have her falling farther to the floor.

So I need advice. What can I do to provide a safe TV watching experience for her?

Apps for Ashley

My gotta-have-the-latest-gadget son, Chip, got the new iPad 3 last week. While I am very happy for him, I am also thrilled (!) because it means Ashley gets his old one!! Yes, it is the first generation iPad, and yes it is a little slow and crashes sometimes, but still it is very exciting for her.

Ashley has been using an iPad at school for a year now, and loves it! The school staff was amazed at how quickly she picked up the techniques (finger swipe and such) as well as at the increased pace of her learning. Of course, I have been telling them since she was in 3rd grade that she needed a computer-based curriculum...

I've asked her teacher to let me know what apps Ashley uses at school so we can get the same ones for home. But, I am also interested in apps you may have found to be especially good for a child with special needs. Keep in mind that Ashley is severely visually impaired (blind in one eye, 20/2000 in the other) and severely hearing impaired (profound loss in one ear, severe in the other). She doesn't need any communication type apps, proloquo for example, because she indicated years ago that all she wants and needs for that are her hands for signing. She loves Tigger, SpongeBob and Elmo, and loves looking at people's (mostly children's) faces. She likes numbers and letters, and she likes movement, i.e. dancing letters and numbers. She's not a huge fan of coloring apps because she would rather create three dimensional artwork.

So, given all that, what are you recommendations for some iPad apps??!!

Boy Talk

Sensitive subject warning…If talk of sexuality and teenagers bothers you, stop reading now. However, if you are the parent of a boy with spina bifida, or are an adult male with spina bifida, please keep reading and offer some suggestions.



Where I could, I always approached the subject of sexuality with my children in a very open and honest fashion. I started early, used an age-appropriate technique, and tried very hard to make sure my children learned what they needed to know from me and not from less reliable sources. But when it comes to Ronnie, that has been difficult.

I don’t know what, if anything, he was taught before he joined my family. He was 14 years old when he joined us, so someone should have really approached the subject previously. But I don’t know if that happened or not. I have no problem starting from the beginning with him on the subject, but honestly, I’m not sure how to proceed given his spina bifida.

Ronnie is in a wheelchair. He uses catheters to empty his bladder and a cecostomy for bowel control. So what does that mean in the world of sexual function? Will he be able to maintain an erection? Will he ejaculate? Will he be able to father children?

I need someone who can help answer those questions and who can help me make Ronnie understand the answers. Would that person be his urologist? I can’t think of anyone else to ask, so this is where I really need your help. Please feel free to email me privately (email is on the right of the page) if you are uncomfortable leaving a comment.

Ronnie is a very caring, very loving person, and a boy who definitely is very interested in girls. He needs some answers, and eventually the life partner he chooses will need to understand the answers also.

And I need to start now to help him find those answers…

Being the Meany

I don't want to tell my children with disabilities that they can't do something, but I'm finding that I have to sometimes.

Ronnie is scheduled to attend a basketball event at a college about 45 minutes from our home on Thursday night, a school night. He probably will not be home until at least 10am and then has to get up early the next morning.

He also has asked to go to the school homecoming football game Friday night, again not getting home until at least 10pm.

Saturday morning, we are scheduled as a family to drive to the mountains, about an hour away, to pick apples. It will be a long day.

Given his medical issues, I think trying to pack all those things in during the course of 36 to 48 hours will stress his health. He, of course, doesn't agree with me. But as the parent, the final decision rests with me.

I have told him that he can go to the basketball event, and that we will go as a family to the mountains, but he can't go to the football game. I believe he needs Friday night to rest and take care of himself.

As you may imagine, I am not his favorite person at the moment. How have others of you dealt with this? Kids his age (16), disabled or not, feel invincible. But they often do have health needs that require us to step in and make decisions. Any advice???

Buyer Beware

Have you ever had this happen? If so, I would love to know how you handled it.

IEPs are almost always held in the Spring in my school district. The planning is for the next school year. Ronnie's IEP was held in May, and his teacher last year, a teacher for the Deaf, as well as the Chair of the Hearing Impaired department, tried very hard to convince me to move Ronnie from our neighborhood high school to another school where the district was trying to consolidate services for Deaf students. In addition, the teacher said she was also moving to that school.

The other school was not that far away from us, and Ronnie said he wanted to go (although I believe there had been a little coercing before the meeting). And, his signing friends were also moving, I was told. The move was going to make my life just a tad bit harder, but if it was in Ronnie's best interest, I would certainly do it.

So I made the decision that he could move. We hammered out the rest of the IEP - heavy on academics, not so heavy on functional skills because I believe it is my job as his parent to focus on those things.

Fast forward to September.

Ronnie starts at his new school and I find out that the teacher for the Deaf is not going to be at that school, and the Chair of the Department has retired. And I'm not so sure that this is a good placement. But Ronnie says he likes the new school. So far the homework that he brings home is heavy on functional skills and light on academics. And, he is only one of three students in his classroom.

Making a change at this point back to his previous school would be difficult. He is starting to make friends, especially girl friends (!) at the new school, and I'm not sure moving him again so quickly would be a good thing. But something needs to be different.

I'm thinking I need to call an IEP meeting and share these concerns with the school team. What do you think?

How To Make It Work?

Here I am again asking for advice. There is one extra caveat this time though. I apologize in advance if I do not use the politically correct words, and I promise not to judge you if you don’t judge me.

When Ashley was younger, she exhibited many behaviors that were similar to the behaviors of children with Autism. That’s not unusual in a child with deafblindness. I even had one doctor who wanted to give her that diagnosis, but it just never seemed appropriate to me.

As her communication skills improved, the behaviors diminished. And, I believe, with maturity even more have diminished. In addition to that, my parenting style includes a heavy emphasis on socially appropriate behavior. That may come from my Southern upbringing…

The past weekend a friend of mine and her family joined us for dinner. One of her children is diagnosed with Autism and exhibits many of the same behaviors I saw in Ashley when she was younger. The problem came when that child with many behaviors which were pretty extreme was around Ashley.

Ashley came as close to a meltdown as I have seen in many, many years. Perhaps it was too much stimulation – perhaps it was the stress endured by both the child and those around him – perhaps the noise and the crowd was just too much for Ashley – but she had a very difficult time, and was on the verge of reverting to some of the same behaviors.

So here’s where I need the advice. This friend is one of my best friends. I want to enjoy the company of her family and I hope she wants the same of my family. But how do we reconcile her child’s needs with Ashley’s needs? What can we both do to support our children during difficult times, and encourage socialization that is positive?

I want Ashley to understand that people are unique and should be valued for that uniqueness, but I also want her to be comfortable.

Suggestions???

Summertime, and the living is easy, or is it?

Only two more weeks and school is out for the summer. Ashley will doing some ESY services but does have two weeks at the beginning of the summer and two weeks at the end with no school services. Ronnie isn't receiving any ESY services this summer.

I really want to make sure that first and foremost neither Ashley nor Ronnie lose any of the skills they acquired during this past school year. It was a great year for them both and their progress was quite visible. But at the same time, I want them to enjoy they summer and do all the summertime things that most kids get to do.

It's finding the balance that sometimes is difficult to achieve.

I know that even things like going to the pool or playing on a sports team can help maintain communication skills over the break. And, I can come up with enough tasks around the house to help maintain their self-sufficiency skills. But what about the academics?

Do you work on academics over the summer with your children? If so, do you have a structured schedule for that, or do you just try to fit it in when you can? And how do you decide what to work on? Is it based on their IEP, or based more on what you feel they can achieve? As we all know, sometimes the school's vision doesn't mesh with the parent's vision.

I know that as a child I was so excited over the summer to have time to just play, to not have to adhere to a schedule, and to explore new places. But I wasn't a child with special needs who needed a schedule, whose skills could regress rather quickly, and who had a tough time maintaining friendships with my peers.

What's your plan for the summer? Do you have things that have worked in the past, or are you going to try something new this summer? And, does your family have any special summer traditions that your children with special needs look forward to each year? Do you feel your children regress over the summer, and if so, is that just something you expect, or do you actively do things to overcome that?

Just wondering....

Not So Swimmingly

Ronnie loves to swim in our neighborhood pool. It opened this weekend, and already he has been there three times. But, I have an issue that may keep him from the pool unless I can find a solution.

Because of Ronnie's spina bifida, he is paralyzed from the waist down. He has no feeling in his legs and feet. When he first joined our family and went to the pool, I noticed that afterwards his feet and legs were pretty scratched up. But he had no idea because he couldn't feel anything.

We tried swim shoes, and after one or two trips to the pool, they were in shreds. Then we moved on to Converse sneakers. Again, after just a couple of trips into the pool, the canvas was shredded and the toes on his feet were scraped up. This year, I have tried scuba diving boots.

The boots were a recommendation of his physical therapist. In addition to being a little thicker than regular swim shoes, they would offer a little flotation and hopefully that would keep his feet from dragging on the sides and bottom of the pool.

But, after three visits this weekend, the scuba boots are starting to shred. And at $60 a pair, I just can't afford a new pair every week for him. Surely though, he's not the first person to face this issue.

So if anyone has any ideas, Ronnie and I would love to hear them. It will break his heart if he can't go to the pool this summer.

Striking a Balance

Do you ever feel like you over-react when you child with disabilities gets sick? I definitely do, but I don’t know how to strike a balance.

Ashley gets sick a lot – usually with cold-like symptoms, and those usually turn into a sinus infection and/or ear infections. I see other parents whose children have colds – snotty noses, coughs, etc. – and they don’t immediately take them to the doctor. But I do.

My over-reaction probably stems from an incident when Ashley was much younger. She was only 3 years old, and was sick with a pretty bad cold. She started to run a high fever, and was having some seizures. The seizure med that she was on at the time didn’t seem to work well when she got sick, or maybe just didn’t work too well anytime.

After several back-to-back seizures, I called 9-1-1. The rescue squad arrived within minutes, bundled her up and carried her to the ambulance. I followed in my car, except I didn’t really follow because with the help of a fireman, I had to scrape the ice from my car windows – I just headed to the hospital. I knew something was wrong when I actually arrived before the ambulance.

Ashley had gone into a major grand mal seizure in the ambulance. She stopped breathing, and the attendants were using a breathing bag on her. Things went from bad to worse that hospital visit when the doctors had to paralyze her to stop the seizures, and then, of course, had to put her on a ventilator.

That ambulance ride turned into a three month hospital stay that was touch and go for way too long. Ever since then, I get overly anxious whenever Ashley gets even a runny nose.

We’ve never had an event similar to that winter’s horrible seizure, but I still can’t relax. It’s been thirteen years, and I still keep a hospital bag packed for her.

Am I over-reacting? Probably. But what can I do to change? Any and all ideas would be greatly appreciated.

'Knee'ding Some Advice

Ronnie is struggling with his braces and crutches. He has said many times that he wants to walk, and because of that, I ordered the full hip to foot braces and a set of crutches. But as therapy approaches each week, and anytime I tell him that it is time to practice walking, he balks. He will tell me that he doesn’t like therapy and doesn’t like walking, but once we are there, he tells the therapist he likes walking. Teenagers!!

I think the reason he is so torn is that learning to walk is hard. And, in my experience with four other teenaged children, tackling something hard is not their first choice. I need to help him understand that while it may be difficult right now, the end result is something he has really wanted for a long time. Unfortunately, that end result may be well into the future. So there’s that teenager thing again – learning to walk with braces and crutches doesn’t provide instant gratification.

When Ronnie is at school, he uses his wheelchair exclusively. When he is at home, he likes to stay out of the chair and scoot around the house on his knees. He’s very good about vaulting himself up into chairs, onto the couch, or into the bathtub. But when he leaves those places, he also vaults himself onto the floor onto his knees. And his knees are starting to complain.

He told the therapist last night that walking was making his knees hurt. After a thorough exam, the therapist convinced him that walking was not the problem, scooting and landing on his knees was. I am going to get him some heavy duty knee pads – the kind like contractors use when laying floor – but he has some decisions to make.

Does he want to walk around the house or roll around the house? I worry that he will choose rolling and over time, severely limit his options for anything else. And the last thing I want is for him to regret never having learned to walk – a regret this his teenaged self may not realize at this moment.

So here I am asking for advice again. Have any of you faced a similar issue, especially with the braces and crutches, and if so, how did it all play out with your child?

Lip Smacking Good

I need some advice.

As some of my long time readers know, I believe in teaching my children manners, and I expect them to use what they have been taught. I do take into account that their disabilities may impact their use of manners sometimes, but most of the time I have found that my children with disabilities can use proper manners just as effectively as my children without disabilities.

But, I’m having a tough time teaching Ronnie one thing in particular. He makes a lot of noise when he eats.

I’ve always taught my children to chew with their mouths closed. I don’t think it is appropriate to make a lot of lip smacking noises when eating. And before you lecture me on how that is a quite acceptable practice in other countries, I remind you that we don’t live in those countries, and it is unlikely we will ever visit there. If we do, I will let my children make as many mouth noises as they like.

But in the meantime, I really, really don’t like the sound of someone chewing with their mouth open.

Here’s the rub. Ronnie can’t hear the noises that he makes since he is deaf. Every time I remind him to chew with his mouth closed, he looks at me like I have four eyes. I tell him that he is making lots of noise with his mouth, and he looks at me like those four eyes have turned to six.

I know that eventually he will catch on, but eventually could take a long time like it did with my now 18 year old son, Corey. I’m looking for a quicker fix though.

So, if you have any ideas or techniques, please share!

(p.s. And I know there are a lot worse problems in the world than making noises while one eats, but today, this is the issue I chose to discuss – you know, that whole ‘this is my blog’ thing….)

Sweet 16

Ashley’s 16th birthday is fast approaching, and I would really like to be able to do something special to celebrate. But..

• She doesn’t like crowds


• Too much noise and too many lights can be overly stimulating for her


• She has a very short list of foods she will eat


• And she doesn’t have any real ‘friends’ because of the severity of her disability and the communication barriers presented by her deafblindness.

All those reasons are why we usually end up celebrating her birthday at home with just the family.

But I really want this birthday to be different – to be special – something she can remember always.

Any ideas????

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?

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.)

Expensive Transportation

Since today was a holiday from work, I went and looked at wheelchair vans. Oh my goodness, they are expensive!

Getting a van is the final step in making our home and family ready for Johnny. He currently has a regular rigid wheelchair, and will be getting a power chair. There is no other option for a vehicle other than a modified van.

I looked at three brands - Toyota, Chrysler, and Dodge. And, I looked at both side entry and rear entry models. One of the challenges I face (besides financing the vehicle, of course) is finding one that has enough seating for everyone. I need the one wheelchair position, and at least four other non-wheelchair seats (including the driver seat). A fifth non-wheelchair seat would be a huge plus, and would allow for an aide to travel with us.

To get enough seating, it seems my best option is a rear entry model, and the Toyota Sienna seems to have the most seats as well as the most comfortable seats. But, I would like your opinions.

If you have a wheelchair van, what criteria did you use to decide on the best model? Were there must-haves and nice-to-haves, and if so, what were they? How long have you have your van, and have you found a modified van to have more/less/or equal problems as a non-modified van?

Do you have any advice for me as I try to work out this last major obstacle? Everything else seems to be falling into place, and it would be wonderful if I could work through this van issue quickly also.