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.