Re: Amtryke Tricycles for CMT Kids

[Guest guest]

I don't understand why she cant ride a regular bike. I mean I

understand about the drop foot but I had the same problem and AFOs

and a sturdy pair of sneakers did the trick. Yeah I fell sometimes

and had a hard time getting on and off but I always used extra small

bikes so that wouldnt be an issue. And when I would fall my Mom told me to get

back on until I got better at it. And I did get better at it, and still cherish

those few short years I was able to ride a bike like my friends. And at her age

I'm sure she still uses training wheels.

But then again, I don't know how severe her CMT is. I would just hate for a

little girl to not be able to ride a regular bike if

it's at all possible. I hope this doesn't sound harsh. But as a

Mother with a 3 yr old I have to always keep in mind that it's not my job to

stop her from falling in life; it's to teach her to get up and keep trying.

I hope this is helpful.

Jane

[Guest guest]

My balance was-is- so bad never did learn to ride a bike...had training wheels

and still ran into a tree...lol

My mom traded her floor model radio for that bike that I couldn't ride and never

hear the end of that.

Geri

[Guest guest]

Jane -

I think we all have to remember that each child affected with CMT

may be symptomatic in so many different ways. learned to

ride a bike very late and has balance issues that now prevent him

from riding a bike with any regularity if at all.

Your experience was obviously different and right for you. If the

worst thing that happens is that this child doesn't ride a bike like

other kids do - what's the diff? If she's out on the Amtryke and

having fun - that's all that matters. IMO

Parents need to go with their gut and do what they feel is best for

their child. I am finding sometimes on this site that adults are

very critical of how parents approach things with their CMT kids.

While I agree we can all learn from each other's experiences, I

think we need to temper our statements to one another. Granted, I

know you weren't trying to sound harsh...but some of us believe that

some falls can and should be avoided.

[Guest guest]

I understand why she can't ride a bike. As a child, I couldn't either.

The muscle strength - and the balance needed just wasn't there. My

kind, caring parents still went out and bought three new bikes for my

two sisters (also with CMT 1A - it's 17 months between me and the

twins)- and me, so that at least we could TRY to our hearths content.

It was also important just to own and clean a shiny new bike, like

other kids.

We also had three pairs of dancing skates and skis.....my poor dad would come

out, wading in snow and pick us up every five minutes, when we were lying in the

field all tangled up in our skies ) He would also come with us to the frozen

lake and support us under our arms, just so that at least we could TRY skating.

This approach made us determined to try everything and to finally

accept that we were unable to do it. Still, I giggle now, just

thinking of the love and hard work my parents put in just to make us

feel like any other kids )

Lots of love,

Nina

[Guest guest]

Thanks Geri! You made my point exactly! Every child is different and

has different issues. My son has fallen; he even broke his elbow

riding his scooter...when he was able to ride one. He played

basketball in 1st-3rd grade until he no longer had the stamina and they

had started playing full court. He used to love to bowl, unti lhe coul

no longer safely hold the ball and now uses a guide. He still swims,

and yup he uses a wheel chair at school. On a really good day he may

try to ride his bike, but he gets so tired...and then he is sick the

next day.

I am so sick and tired of people commenting that kids don't belong in

wheelchairs if they have CMT. I am not enabling my child, nor am I stopping him

from being a kid and having fun. He no

longer enjoys sports...oh well - there are worse things in life!

If it makes you feel any better I still can't draw a straight line with a

ruler....how's that for pathetic?

Again Geri - thank you....I don't think you are less of a person

because you couldn't ride a bike...you sound like you still had a great

childhood!

[Guest guest]

I understand also. I'd get it in my head to try to learn to ride a

bicycle every now and then.. but I didn't have the balance or strength

needed to accomplish it. I tried on and off for about 7 years though.

Now as a 31 year old, I can say there are definitely worse things in

life then not being able to ride a bicycle.

Hugs,

[Guest guest]

You know, my mom had to teach me balance and riding a bike by running along side

holding the bike up while I pedalled. One time she let go and I did not know

it. That was how I learned to ride a bike.

She had CMT and could not run fast. But she did try to make me learn as best as

she could.

An Amtyke is a good idea. But also maybe a PT/OT could advise on some ways to

get your daughter to understand her sense of balance.

BTW, to this day my sister cannot ride a bike. She has CMT too. The

running alongside trick just did not do it for her, and frankly she grew up

where swimming was much more a part of daily life as there were so many hills

around.

Donna from London

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