Interesting article at BBC

[NJenn]

http://news.bbc.co.uk/2/hi/health/6248332.stm

As soon as that issue of the Lancet is posted to pubmed, I'm going to read it. This article doesn't state whether or not kids across all ability levels/CP types were studied, or if they "cherry-picked" certain kids. Interesting!

[Tmagic650]

Yes Nicki,
this sounds a little "too" good doesn't it... I've always been one not to dwell on the negative, and be as positive as I can. I know AB kids have trials and tribulations growing up, just as we with CP do

[NJenn]

It rang true for me, as I read it. I don't remember feeling unhappier than other kids as a result of my disability. Now the family disfunction's effect on my happiness? That's another story... but it had nothing to do with the CP :D

[Katherine]

I thought that was a good article... can you guys guess which paragraph stood out for me? ;)

[Tmagic650]

Was it the last paragraph Katherine?

[CPchick]

Rarely, I do feel unhappy about having CP compared to my peers, just because they're all out partying/going to movies/or the mall, and just being teenagers and they don't think to invite me at all. That's one thing I would want, more of a social life with my peers.

Mostly though, life's all good and I feel I have more opportunities with having CP than my able-bodied mates do.

[Michelle]

It rang true for me, as I read it. I don't remember feeling unhappier than other kids as a result of my disability. Now the family disfunction's effect on my happiness? That's another story... but it had nothing to do with the CP :D

I have to agree with Nicki. I really wasn't a less happy kid because I had a disability. HOWEVER, it was easier to tell people I was less happy because I had a disability rather than saying, "My family is INSANE." :eek: Which is something I started doing after a school social worker called my mother in fifth grade. So, if ever I was unknowingly part of a similar study... I put the findings out of whack! :D

[CrunchyVeggies]

I agree, nice article. NJenn, could you post the Lancet report when it comes out? I'd be interested in reading it as well.

"For example, for a lot of children, there's a lot of effort in helping them to walk."

"But usually if a child goes into a wheelchair they suddenly become much more mobile and from the child's point of view it can transform their lives even if from an adult's point of view it seems like a step backwards."

Yes, how true. So liberating! :)

[Donna Thomson]

I posted my response over on Child Neurology. I'm not good at copying stuff. :o

[mumtosarahlou]

Really good article. I think it's so important to recognize how important pain management is in the quality of life of a person. It can't be overstated. Continuous assessment is essential, especially in those who cannot express it verbally. I'm so glad someone pointed this out!

[Tmagic650]

Just imagine how a person with CP feels at 57... you young people have a long way to go... and don't be discouraged

[Katherine]

I can't even imagine having CP at 57! I'm already worse off than my 54 year old mother!

[NJenn]

My folks are in much better shape than I am too. Even my stepdad who smokes and drinks too much. But, so much of this is mind over matter. You just keep pushing through because you have no other choice. You still have to get to work, to the grocery store, get the laundry done, find time for fun stuff, etc. Because life goes on.

A few weeks ago, I had a series of epidural injections into my SI joints. They seem to have helped my back a bit. I'll take that. I'll take any little bit I can get, actually.

[Tmagic650]

Yes,
CP does take it's toll on us... I've been using canes, crutches and wheelchairs all my life. I lifted weights from age 12 to 50. I once benched 450 pounds and I only weighed 150. Right now at 57 I take a blood pressure pill, Prilosec OTC, and diclofenac sodium 75mg a day. Along with vitamin C an E. I drink a lot of water and I drink one or two Coke Classic 12 oz cans a day. I weigh about 185 now. That's a bit heavy, but I like my beer too. My dad died 4 years ago. He was 84, and a long time alcoholic. My mom will be 87 in September. She is in good health, lives alone and still drives a car. I have a sister 54, and a brother 59, all AB's

[Katherine]

But, so much of this is mind over matter. You just keep pushing through because you have no other choice. You still have to get to work, to the grocery store, get the laundry done, find time for fun stuff, etc. Because life goes on.

So true. And on top of the CP wearing us down, I think the fact that we just keep going because we have no other choice wears us down even more. But of courser we're just going to keep going so there's not really time to think about that!

[jul97]

Until I was 12 I was just as happy as my peers, if not happier. When I hit 12 reality hit me all at once!!! It's been a struggle ever since. For example not being able to drive has been WAY harder on me then my parents getting divorced. They split when I was 19 and I felt like it happens, life goes on you know I just want em both to be happy and feel lucky i still have both of them. (it was also an easy divorce as divorves go) Not driving has been WAY WAY harder for me to deal with.

[NJenn]

Have you tried to learn how to drive? Most people with CP can drive. The mental and financial barriers are much bigger than the physical barriers.

I learned to drive in 2 months (after 4 years of fretting about it). No formal evaluation. Just me and a good friend in a junker car that I saved up for, with a set of handcontrols that cost me $200 to install. It changed my life, and it might very well be possible for you.

[Tmagic650]

Maybe vision problems are keeping jul97 out of the drivers seat

[blackbelt1997]

The fear of driving kept me out of the driver's seat. I didn't get my liscense until I was 18 years old.

[Nat Hyland]

I disagree with the main premise that children with CP are just as happy as any other kids. I have what would be considered very mild CP, but I found primary school particularly difficult. I was often mercilessly teased, imitated, called rude names and ostracised by my peers. And I use no aids and didn't even wear glasses until I had to start reading lecture boards at university (not good for the eyes :rolleyes: !).

I do agree with NJenn though in that we really have no choice but to "keep on keeping on", except for most people with CP (or various other conditions) this can require more effort than for the "normal" population. It's hard to keep smiling and pretending nothing is wrong when you have a splitting headache or backache, but I do that all the time because I don't want people to think I'm just using this pain as some sort of excuse.

After all, I just want to be treated like anyone else.

Nat.

[jul97]

Oh yeah I've tried;

been thru three adaptive driving programs and to see a neuro-optimalist, ask every ot I meet, yada yada..Fear isn't my problem, it's my god dam ataxia~every specialist I meet says my motor control isn't good enough..

The last program I went to the guy said only about 10% of those with CP drive, don't know where he got that figure.

I am definately open to trying again!!

[Michelle]

The last program I went to the guy said only about 10% of those with CP drive, don't know where he got that figure.

Including NJenn (who I've never met in real life--but she graduated from my HS in the same class as my sister) and including myself, I know 10 people from my immediate location with CP and she is the only person I know that drives. So that sounds about right in my highly unscientific opinion.

[noza]

I also know a lot of people with CP with different abilities/limitations and unfortunately only very few of them including those I know only from the internet are able to drive :(

[Tmagic650]

All the kids probably 20, except those with vision troubles took drivers training at 15 years old, in my school at the time This was in Los Angeles, California 1965. I would say about 2/3 of the kids got their drivers license. It takes the proper training, and the proper controls/adaptations to be sucessful and confident at driving. I suspect that many of the driving failures are due the lack of at least one of these factors

[NJenn]

I agree. Now days, I think it's more about lack of proper training. It takes a lot of time for someone with CP to learn how to drive, and that extra time is hard to come by and expensive if you're going through former drivers ed. There's no substitute for the extra time it takes to build up the muscle memory for completing common driving manuvers (ie: checking blind spot while keeping the car from running off the road, smooth lane changes, using the turn signal while also using handcontrols, etc). It also takes some extra time just to build confidence on the road. As CPers, we don't get a lot of those normal childhood experiences with movement and speed that aclimate us to driving as teenagers. A lot of us don't get to ride bikes or go-carts, or even riding lawn mowers for that matter. Those sorts of experiences make kids more comfortable with speed and movement. Add to the mix the expense of the equipment, and a healthy dose of overprotective parents (most of us have those, too) and the requisite learned helplessness that ensues, and no wonder so few people with CP drive.

For these reasons, it's stil my gut feeling that there are many people with CP who could drive who think that they can't. I'm talking about folks with primarily CP only whether it be diplegia, hemiplegia or quad. Even with a startle reflex, many can still learn. The more used to an activity you get, the less likely you'll startle. I'm not including the folks who have other diagnoses that would complicate driving for someone even in the absense of CP (ataxia, nystagmus, depth perception issues).

Just my .02

[NJenn]

I am definately open to trying again!!

By all means, DO IT!!!!:D

I love to drive, it's the only time I feel just like everyone else.

[Tmagic650]

"I love to drive, it's the only time I feel just like everyone else."

Hi Nicki,
I have friends here that have never seen me out of my wheelchair. The other day I was putting my old rigid Quicky in the trunk of my car, when one of these friends came up to me, very surprized. He was not only shocked that I could put the wheelchair in the trunk, he didn't know that I drove. I showed him the hand controlls. He was amazed...

[Donna Thomson]

Oh yes, great conversation. It took me (and I'm AB!!!) 11 years to learn how to drive and get the confidence to pass my license. Now mind you, about 9 of those years, I had given up and wasn't even trying. But just to say that if you have CP it will take longer and be more hard work to do it than if you didn't have a disability. Just keep in mind that many AB have a terrible time getting the confidence and coordination to get it together. In the UK you cannot get your license on an automatic shift, only on a standard! One must truly think outside the box at all times. In London where we live now, we have a driver because of my DH's job. Many many people have drivers because there's no place to park and driving in this city is a nightmare. If you can't get your license, I suggest putting an ad in the paper (or if you can't afford that, anyplace where car nuts look) and advertise for a driver with car who simply loves to drive. Explain that you can't pay or only little or whatever and take it from there. Explain briefly how much fun it will be. Vintage cars are even better. Turn it into theatre. You never know. Here in London, there's a Bently enthusiasts club and a Rolls Royce enthusiasts club. But at home in Canada one of our old carers for Nick collected vintage cars and was just looking for opportunities to cruise around with Nick. There are people who love to drive.
Just some thoughts late at night over the pond. Donna

[Katherine]

Before I got my learners permit there was some discussion as to whether I would actually be able to drive because I am not able to voluntarily dorsiflex my right foot at all. My achilles is way too tight.

However, I must have forgotten about this because I went on to get my permit and then my license on my 16th birthday. I've never been in an accident (besides someone running into me while I was stopped at a freeway off ramp) and I've never been pulled over.

I think the statistic that only %10 of the people with CP drive is awfully low.

[noza]

I apologize beforehand for my English and the incoherence of the below written :)

I learnt to drive in a regular car with manual transmission (most of the cars here in Europe are manual. There are a few driving schools where you can learn to drive an automatic car but the automatics are much more expensive and you have it stated in your license that you can only drive an automatic car).

Physically, I was able to drive the car, no problem with the pedals, I don’t have startle reflex (or at least, I can’t remember any situation when I would have startled/“jumped“). I got the license at 27. My parents have never been overprotective (and not just driving wise). In fact, it was them who told me at 18 (the age you can get the permit here. Btw, is there any difference between the „permit“ and the „licence“?) to try it but they didn’t push me at all. Nine years later I felt I was ready to give it a try and my parents supported my decision. My instructor had never had experience with disabled people before but he was very nice and patient. I took extra lessons, more than most learners did/do. As for the test, it was a piece of cake. I was among the first who finished it. Then I started to drive with my mom short distances in our small town and outside the town. I also drove for 2 times for about 2 hours to another town with more busy traffic. Once I drove from work home alone but my mom was driving in front of me. I could drive as long as someone was sitting in the car telling me what to do in „critical situations“. Most of the time I could drive only the short routes I knew very well (from home to the mall or work, etc.) and always with some experienced driver in the car. I thought I just needed extra time/practice and I would manage it. It will take time but I will drive one day and I will taste the sweet sweet independence. I wanted to drive so much! I also took extra lessons in an adapted car with hand controls and automatic clutch with an instructor who worked with people with disabilities, CP included. He was also very patient like my first „regular“ instructor. I drove in a city with more traffic than in my home town and despite my many faults I really enjoyed it and still believed that I would become a driver one day. We even bought an automatic car to make it even more easy for me. But as the time passed I had to realize that I will probably never be able to drive alone in the car, no matter the time/practice, my effort and the support of my parents... Practice makes perfect seemed to not work for me...

I’m not able to judge the distance and the velocity, I have slower reflexes and I’m slower in spatial awareness. I can’t resolve „complex situations“ fast enough to be a safe driver. So, in my case, my diplegia and hand controls or proper training have nothing to do whatsoever... I don’t have visual problems neither seizures. I officially have no diagnosis and even my physiatrist told me that there is nothing why I could not drive (she only knows about my physical limitations though). But I know there are people who have no motor impairment but they can’t drive due to dyspraxia or other learning disability. This is probably my case. It is very difficult for me to accept it and I still have not come to terms with the cognitive issues I have on top of my motor disorder and the fact that I can’t sit behind the wheel... I still struggle with what to answer to people who ask me why I don’t drive... I hate to be dependent on others when I want to get somewhere. I live in a small town with practically zero public transportation so I can’t get anywhere on my own despite my ability to walk relatively long distances for a CP-er at my age. I tought to have a personal care assistant to drive me places but I’m so ashamed to talk about my difficulties and I can’t fight it... On top of that I work in a tyre company where everybody – customers and employees - are drivers and I can’t get those darn wheels to move...

[Tmagic650]

Before I got my learners permit there was some discussion as to whether I would actually be able to drive because I am not able to voluntarily dorsiflex my right foot at all. My achilles is way too tight.

However, I must have forgotten about this because I went on to get my permit and then my license on my 16th birthday. I've never been in an accident (besides someone running into me while I was stopped at a freeway off ramp) and I've never been pulled over.

I think the statistic that only %10 of the people with CP drive is awfully low.

I agree Katherine,
I too think the 10% statistic is low, specially in the USA. I got my first ticket 2 weeks after I started driving alone. The cop said that I didn't stop completely at a stop sign. I was behind an elderly driver and she pulled way out into the intersection before she drove away. I was stopped behind the white line for 15 seconds or so, and the intersection was clear. I guess to the cop, it looked like I came out without stopping. I bought my first car at age 20. It was a 1970 Dodge Challenger R/T... very fast car! 150 miles an hour. I drove it for 5 years, and I got 3 speeding tickets in that time. I've been in a few accidents, My hand control broke getting off a freeway. I smashed into a Porche. No one was hurt. The control had been moved from one car to another, improperly. It wasn't my fault. I have driven from San Francisco to Richmond, Virginia by myself. It took 5 days. New York City to Orlando, Florida with a girlfriend and her 4 year old son. I love to drive!

[jul97]

[QUOTE=Tmagic650;129958]"I love to drive, it's the only time I feel just like everyone else."

Have to admit I'm jealous, looked foward to that growing
up-when I drive it will be lots better I'd tell myself when I was around 13 and all my friends could go on thier bikes.

I wish driving was like ice skateing:

I was lucky enough to grow up on a lake so when it froze everyone went skateing. After bugging my mom for I don't know how long she finally said ok here's the deal, if you can walk around on the ice w/o a problem then I'll find you a pair of skates to try. I was nine, go out there thinking this is going to be easy. First step I take w/o holding on to the dock-bam I go down, really hard, hit my head on the ice, it really hurt. Dad came out to carry me back into the house, sat on my mom's lap for I don't know how long with ice on my head. Had like a goss ege for about a week...

You know what, I never wanted to go out on that ice again-I was cured of the I wanna skate with everyone else. I would always enjoy wen the lake froze cause everyone came over and I'd watch em, thru snowalls at em from the dock, they'd hang out after.

If only driving where that simple!!! If I hurt someone, I'd feel awful for the rest of my life. I am an adult, that's not a boo boo mommy can make feel better. But I am still looking for a way to safely do it!

[blackbelt1997]

I have mixed cp (athetoid, spastic, and spastic) and I'm considered to have double hemiplegia, which a book I read said is more like diplegia.
Learning to drive took about 4 years. I got my permit (driving with a liscensed driver in the car) at 15, and then got my liscense (able to drive solo without anyone else in the car) at age 18. I was almost 19. I went to a "commuter's" college (no dorms, everyone drove), and my mom or dad had to drop me off or pick me up each day when I was in classes.
It took me 3 tries to pass my driver's test.
I probably irritate the other drivers because I tend to wait until the traffic is really clear before pulling out because I have a hard time with judging how fast people are going and how close they are.
None of the accidents I've been in have been my fault.
My good friend has cp and she drives. She's also got a visual impairment, so I'm not sure how well she drives. An acquantaince from college has cp and she drives. 2 guys with cp I knew from college don't drive one because of a visual impairment and the other with spatial issues.

[Tmagic650]

I think all people with CP should be given drivers training and the opportunity to drive... How else will they know if they can do it

[noza]

Thanks for explaining the difference between the permit and the license, blackbelt :)

[blackbelt1997]

You're welcome noza.

[lisa6wks]

I have always wondered if kids with the more "invisible" types of disabilities like my son has where his CP mostly affects his oral and fine motor skills have a harder time of it, especially in the teen years because people expect them to be able to do everything just like anyone else does, Since they are not visibly disabled, meaning there is no wheelchair or obvious motor impairment.

Is that how it seemed to you Nat? I know my son had a horrible time with both other students and even staff at his junior high giving a rough time. So much so that he asked to be moved to another school. I wonder if others would have given him more of a break if he had been in a wheelchair?

Lisa

[NJenn]

I have always wondered if kids with the more "invisible" types of disabilities like my son has where his CP mostly affects his oral and fine motor skills have a harder time of it, especially in the teen years because people expect them to be able to do everything just like anyone else does, Since they are not visibly disabled, meaning there is no wheelchair or obvious motor impairment.
Lisa

Interesting point, but I'm reticient to generalize. Those of us with not-so-mild disabilities may not always feel the pressure to "keep up" (although some of us, like me, do), but we have our own social challenges. Namely scads of people who feel it's their right to tell us what we "can't" or "shouldn't" do. Sometimes, those people who tell us we can't are gate keepers. In my case, it was my mom holding the car keys....

[blackbelt1997]

Middle school was extremely rough for me. I remember saying that I wished I had been "retarded" so I wouldn't have to put up with the bullying from peers and staff. Of course now I'm glad that I have my intelligence. I eventually went to another school. I would have to say that my cp is definetely visible. I walked with a noticable limp and carried my hands awkwardly at my chest. I was the butt of many jokes because the "cool" thing in middle school was to call anyone different "retarded" by making their arms like mine naturally do. I wear an AFO now which improves my gait tremendously, and I can hold my hands more relaxed. Most people may not know that I have cp, but they definetely know that I have "something".
I think it comes down to disability awareness whether someone has a visible disability or not.

[Lauren88]

I think even 'visible' disabilities can be invisible sometimes - Murphy's law! :rolleyes: don't worry I will explain

I think most people who know me would agree that when I am walking the fact that there is something 'wrong' with me is fairly obvious - I limp and my hips move differently to ABs - it'[s difficult to describe but I'm sure many of you will know what I mean. Also like you Pil I carry my arms awkwardly, left especially.

However, a lot of the time when I'm walking, especially without my walker, when I'm most vulnerable, I feel like it's not obvious ENOUGH. To give you an example, before I got my walker I would walk, often without aid, into school to get to my wheelchair. Other kids would come barreling along and even though I would be clinging to the wall for support, they would still barrel into me, oblivious. In that way since I got my walker I welcome the fact that it has made my disability more obvious, simply because it provides a physical barrier between running people and because its a physical symbol of my disability PEOPLE MOVE OUT OF MY WAY! at last! :p

But at the same time sometimes I've been lulled into a false sense of security, so to speak, and then a person will come up with another variation on the 'what's wrong with you' speech, and I'm surprised all over again, like 'are you talking to me?' :rolleyes:

Like I said it's Murphy's Law - when it would actually be USEFUL for ABs to recognise that we have a disability, like when we're practically falling over and they STILL come barreling down the hall heading straight for us (I know this may sound exaggerated but that's what it feels like), they don't notice, and when we just want to get on with our lives like the perfectly normal people we are, it's 'what's wrong with you?' :rolleyes:

oh well onwards and upwards ;)

[lisa6wks]

Lauren,
I think that was kinda the way it happened with my Kevin. People knew there was something off, but not what it was and tended to underestimate his intelligence which really ticked him off! I know the "R" word was bandied about as well.
I am ashamed to say I probably acted as a "gatekeeper" as well.:( Didn't want him to try things I was sure he couldn't do, looking back, you never know what you can't do till you try it. I just didn't want him to be "hurt". Big mistake.

Lisa

[jul97]

I am sure that you are just being to hard on your self lisa with the should have, would have could haves. I think all good mothers are...

Lauren: also remember being scared that the other kids would trample me,the daily stemped to the playground was tough. I was upset when my doc told me I need to return to 6th grade in a wc but the good thing was I didn't have to play get to the sand as fast as you can cause falling on sand is better then getting knocked down on blacktop.

[Tmagic650]

This is another side-effect about being mainstreamed too early. Sure I was teased my some of the neighborhood kids, and other AB kids in my early summer and holiday travels. My "special" school memories are good. All 65 kids, boys and girls, had some kind of physical and/or mental disabilities, from CP to MD, and from other birth defects. The MR were segregated from us.

By the time I was mainstreamed at age 16, I had learned to deal and live with my diabliity and the "special" experiences allowed me to learn to be tollerant and compassionate to others, disabled and Able Bodied. I had no trouble meeting people and making friends. You people that have issues with being accepted and low self-esteem, spend a month with me and my wife, and I can guarantee that you will become more self-reliant and confident in all aspects of being human

[NJenn]

spend a month with me and my wife, and I can guarantee that you will become more self-reliant and confident in all aspects of being human

Is this an invitation to come visit you out in God's Country that I see here? Careful, I just might take you up on that....

[Tmagic650]

Any time Nicki,
we're experiencing the "Dog Days" of summer right now. Hot and sticky... You should come out sometime and ride with us in an RV, touring Yellowstone National Park. Maybe I'll have my new wheelchair by then... maybe not :mad:

[NJenn]

I just might take you up on that Kurt! I've never been to Yellowstone :D

Maybe I'll have my new wheelchair by then... maybe not :mad:

You still trying to get that TiLite EVO?

[Tmagic650]

After 2 home evaluations and 2 physical exams by 2 licensed Physical Thearpists... nothing! It's been 4 months since the last evaluation. Many phone calls and still nothing. I am contacting one of my state Senators next week and see if he can push things along a bit

[NJenn]

Is it your health care providers being slow with the paperwork? Or is it the insurance company with denials? If it's the latter, contact Montana's Attorney General.

[Tmagic650]

The healthcare provider was very quick getting the paperwork to the Durable Medical Appliance dealer. They are the folks who send the completed paperwork to Medicare. I have no other insurance

[NJenn]

So, it's the durable medical equpment vendor that's not returning your calls? What excuses, if any, have they given you? For what it's worth I've only worked with one DME vendor that was good, and that was just last year. The company he works for, though is terrible. Took them 6 months to get me a 75 cent plastic part for my power wheels that I couldn 't just order myself.

[Tmagic650]

Yes Nicki,
it is the DME Juro's Medical that would order my TiLite... They have changed many more employees in the last 6 months than you can imagine. I have a new contact to bother now. I'll let you know what happens

[CPchick]

Ew, no. I would hate to be with other physically disabled kids. It would make me feel more abnormal, and would feel wrong to me. I like proving my able-bodied peers wrong, it is a good feeling when they finally realize you're not stupid. Plus like, if you were in a 'unit' of physically disabled people, normally there is a small group varying in ages, so you would not be able to learn properly because people would be at different levels, whereas at school we have streamed classes where you can learn at your level.

[Katherine]

Personally, I would have loved to have more interaction with PWDs. It would have taken away some of the stress of having to always appear "normal".

[Lauren88]

I have had both experiences - in primary school I was the only physically disabled student, and in secondary there were many other physically disabled students BUT I still had problems because there was nobody remotely like me i.e. can walk and does but uses a chair a lot of the time too - most of the PWDs at school either couldn't walk at all/very little or walked all the time. There are pros and cons to both. Some of the cons I think can be alleviated by having support staff and teachers with experience of physical disability and related problems - which in primary school I didn't have, and my early years were MISERABLE as a result. :eek: I had the problem of being disabled ENOUGH that everybody was like 'what's wrong with you' :rolleyes: but not enough to get accommodations that I sorely needed. To give you an example (sorry in advance if TMI) I was doubly incontinent till I was about 8 (I don't know how I gained the ability to 'tell', I also think my muscles may have strengthened in that time - whatever happened I'm just v. glad it did. :o )

When I had an accident I just got yelled at by teachers and 'support' staff, to the point where on the rare occasion nobody I would just sit there in whatever, hoping nobody noticed till I could get home to my mum. This is where secondary school, with dedicated support staff and PRIVACY (in primary I used to be changed in the toilets in full view of the other kids) was a revelation.

But being amongst 'normal' kids made me ambitious, walking (and falling ;) ) all the time really helped me physically, as did 'normal' PE, i.e. with co-ordination, and even though I couldn't do PE 'properly' and always came last in races etc, the buzz I got from hearing the other kids cheering me on was fab!

In secondary school I did in my early years resent how all the PWDs kinda got lumped together, for example at the easily accessible table at lunch (when I wanted my AB friend to sit with me the LSAs who helped the other kids wouldn't let her :( because they needed the space for other W/C users.

In secondary school we also had 'specialist' PE, which I wasn't keen on because it bored me and wasn't physically challenging (the one class had to cater for all levels of physical disability, so we mostly did stuff like boccia which bored me - sorry Erin ;)

A lot could have been helped by my being more aware of my rights - for example when I asked to do 'normal' PE in secondary school I was just brushed off and directed towards specialist PE when in fact they were obligated to put an LSA in to help me if I needed one (which I did.)

Moving from being the only PWD in primary school to a secondary school where there was a wide range of disability (learning as well as physical) was a culture shock - for a long while I was quite isolated because I didn't see myself as fitting in with the PWDs, but very few of the ABs wanted to be friends with me either - it was the old 'you're disabled therefore you must want to be friends with other PWDs regardless.'

But ultimately it's given me a much broader experience of life and enabled me to interact with a wide range of people. There are obviously very hard things but I can't change it and overall nowadays anyway life is good ;)

sorry for the novel

[Tmagic650]

Ew, no. I would hate to be with other physically disabled kids. It would make me feel more abnormal, and would feel wrong to me. I like proving my able-bodied peers wrong, it is a good feeling when they finally realize you're not stupid. Plus like, if you were in a 'unit' of physically disabled people, normally there is a small group varying in ages, so you would not be able to learn properly because people would be at different levels, whereas at school we have streamed classes where you can learn at your level.

It is actually much different being with other PWD's. Do your AB friends think "Ew, no. I would hate to be with physically disabled kids. It would make me feel more abnormal, and would feel wrong to me..." So you are actually an AB wannabe? You are very immature aren't you

[NJenn]

So you are actually an AB wannabe? You are very immature aren't you

Lots of us are AB wannabes at one time or another. When I see a woman running--really running-- on a warm summer day, I certainly wanna be an AB. And I certainly feel more than a little jealous.

Can we please keep the comments about maturity out of this board? Comments like this, have in the past, completely shut down dialog here. There's a lot of us on this board of vastly different ages, that come from very different background, schooling styles, parenting styles, coping styles, cultures and nationalities. There's no right or wrong way to deal with having a disability. The way I dealt with having a disability at Erin's age was totally different than how I handle it now. But I had to go through that to be where I am today. I'm sure you didn't pop out of the womb as an all-knowing disability sage either, Kurt ;)

[lisa6wks]

Thank you Jen,
I am definitely "a thin woman" wannabe and a "no migraine-ever" wannabe, don't we all have those wishes from time to time?

Lisa

[Tmagic650]

"It would make me feel more abnormal, and would feel wrong to me. I like proving my able-bodied peers wrong, it is a good feeling when they finally realize you're not stupid"

People often feel that a PWD with a speech impairment is retarded or "stupid"...

"It would make me feel more abnormal, and would feel wrong to me"

This has more to do with poor self-esteem than the fear of being with other PWD

[Tmagic650]

" But I had to go through that to be where I am today. I'm sure you didn't pop out of the womb as an all-knowing disability sage either, Kurt"...

That's right Nicki,
but by the time I had gone though years of surgeries and physical thearpy (age 5-17), at age 14 I was a pretty knowledgeable PWD.

Schools for the disabled in Los Angeles in the 50's and 60's were much different than the PWD schools in the 80's and 90's to the present. We had a lot of Polio and MD kids. The CP was more "pure", and not mixed as it was later years. We were not affected or slowed in our education because the kids with Polio, MD and "pure" CP did not have the mental or intelligence issues that are more pronounced today. The Downs Syndrome kids were very sweet and helpful to us. They were more "able bodied" than many of us were

[noza]

Nice post, Nicki. Thanks :)

[blackbelt1997]

I love competing with other PWD at swim meets and stuff because we all "walk in each others' shoes" (swim in each others' flippers perhaps?;) ). On the other hand, when I am in the community (Master's degree classes, at work, shopping, etc.) I don't view myself as having a disability, unless the topic comes up, I get an unusual stare, etc. Of course my cp is always with me, but when I am at work or in class, I take on the needed title (Master's degree student, special education teacher, etc.)
When I was younger (8 or 9), I never wanted to associate with individuals with cp. Perhaps this was because I never knew anyone with cp to relate to. At that time I guess I didn't realize the impact cp had on me.
Everyone ABs and PWD mature at different rates and develop positive self-esteems in their own times as well.
I like what Lisa was getting at that everyone is jealous about their own characteristics at one time or another.
People calling me names (retard, etc.) has lost its damaging effects. When someone calls me "retard", I often turn it back on them by saying "You're calling me retarded. Can't you come up with anything more creative than that to call me?" That tends to really make them mad. :D

[jul97]

I am a total AB wanna be man:

I aam also pro-mainstreaming from Kidnagarden on for most PWDs...

I've thought about it, my bad school experiences, maybe I would have been better off staying in a special school, I was in a pediatric hospital five times and everyone there was always soo kind and compassionate. Maybe that was what it would've been like at a special school.

But my answer is always no, I was better off getting used to the 'real world' from the git..(plus mom made me go away to gimp camp when I was 13, hated it, they treated us all like we were four, couldn't wait till my 12 day sentence was up. I joked the whole time I was there, I was sentenced to this place cause I didn't play nice with the other 7th graders)

Why should PWDs be segergated cause of others ignorence???

All kids get teased, it's a fact of life. Now I think schools should do more to stop it....But it's not an issue specific to disabeld kids

I am also pro school choice for every child, there's no one size fits all when it comes to education

[jul97]

Lots of us are AB wannabes at one time or another. When I see a woman running--really running-- on a warm summer day, I certainly wanna be an AB. And I certainly feel more than a little jealous.

Can we please keep the comments about maturity out of this board? Comments like this, have in the past, completely shut down dialog here. There's a lot of us on this board of vastly different ages, that come from very different background, schooling styles, parenting styles, coping styles, cultures and nationalities. There's no right or wrong way to deal with having a disability. The way I dealt with having a disability at Erin's age was totally different than how I handle it now. But I had to go through that to be where I am today.

well said NJENN!!!!!!!

[CPchick]

It is actually much different being with other PWD's. Do your AB friends think "Ew, no. I would hate to be with physically disabled kids. It would make me feel more abnormal, and would feel wrong to me..." So you are actually an AB wannabe? You are very immature aren't you

I have no idea what PWD means (Yes, I am an intelligent-person wannabe by your standards) Yes, my friends probably do think that. I don't particularly care either. Just because I would prefer not to be schooled with other physically disabled kids does not make me an 'AB wannabe'. Thanks for trying though. You think you're so wise, you think you're always right, you think you are the best person on the forum, well sorry to break it to you, but you're kidding yourself

See ya. I'll take my immature 'AB wannabe' self somewhere else.

(Call me immature all you want, I couldn't care less. At least I have the excuse that I'm a teenager.)

Kbye.

[Katherine]

Come on guys, let's not fight here. As Nicki said, everyone has different ways of coping with their disability. That leads to different outlooks on life, which sometimes causes clashes.
Erin, no one wants you to leave. You're a valuable member of this board.

[blackbelt1997]

Completely ditto to what Katherine said.
We need to support each other. I'm sure we all can remember the struggles that adolescence brought with it. Adolescence is a difficult time to go through. Cp or another disability makes adolescence that much more challenging.
The goal for every human is to have a great self-esteem and self-confidence. The adults on this board made it and are making it, and we didn't have the support of the Internet to get us through rough situations. We need to support and encourage others when they are going through a rough time, or a rough stage of life.
If we make fun of each other, we don't have a right to get peeved that others discriminate against us (be this by words, attitudes, or inaccessible places).

[lisa6wks]

Erin,
I think your opinions and insights as a teenager are very important to this forum. I may not have CP, but I have a son with CP and I teach lots of kids with it, with all different coginitive skills. I know it's hard not to let others get under your skin, but you are really a valuable member of this board and I think you need to stay :)
I think sometimes people forget that education has changed quite a bit in the last 20 to 30 years and hopefully there is now no reason for kids with physical disabilities not to be in classes with their same age peers. I know I had to do some fighting for that for my son and that was only 28 years ago.
You have great spirit Erin and I love the way you "tell it like it is".

Lisa

[NJenn]

Erin,

You have great spirit Erin and I love the way you "tell it like it is".

Lisa

Ditto that. I hope you'll stay. But if you stop posting here, please keep posting at Child Neuro. I love reading about your adventures because it reminds me of the fun times (and sometimes the not-so-fun times) I had at your age. It's easy to forget about that stuff when you get a little older.

[Lauren88]

Ditto what NJenn and everyone else said Erin - I too really value hearing about your experiences at boccia as well as your contributions to this board. We all come from slightly different 'places' with regard to our life experiences and CP experiences are just a part of that - just because experiences and opinions may differ doesn't mean they're not equally valid and appreciated. :)

[blackbelt1997]

Erin,
If you don't ask, you don't know. A PWD is a person with a disability or people with disabilities. When I started swimming on a swim team for PWD, one of the coaches said that I needed to join an AB team. I had to ask what "AB" was.

[Tmagic650]

In my daily life here in Montana, I meet PWD that were injured in accidents more than birth. Because of my age, I also see a lot of elderly AB's with age-related disabilities...

It really depends on a person's personality, more than his or her disablities, that determins how well they are going to cope with life. Everyone here seems to disregard my posts, and think that I know nothing about being disabled. Like most of you, I was born with CP (Spastic Diplegia CP). I have accomplished more than a lot of AB's at this point in my life, and I am experienced in life... in general