A challenge for those strong enough to try.

Just moving some of the stuff from facebook to here that I have written.

Yesterday I had a phone call from a mum who had 2 boys with Duchenne Muscular Dystrophy - the same as Ryan. Her boys passed away over 20 years ago. We were talking about how some things hadn't changed in all this time. One of these things was understanding. How people don't seem to understand what it is like to look after someone with a physical disability.

Now this got me thinking and apart from me putting here what I do as a carer, I could get some of you to do something that Ryan's primary school use to get the kids to do.

Do this when there are 2 of you around and you can even swap roles at a later date. Now the only movement you have in your body is your hands... not your arms, just the wrists down. You can't even move your neck... but your mouth works fine. Now I can see you’re wanting to type a reply to me. You can, you just have to use the onscreen keyboard with your mouse. Don't have a mouse?? Well tough you can't reply then.

Now the other person that is there has to help you. Your leg is itchy or there is a fly on your nose - they have to scratch the spot with only you telling them exactly where it is, or they have to stay around shooing the fly away.

Your thirsty and hungry - they have to get you a drink and give it to you.... use a straw otherwise it will go all over you when they tip it. They have to cut your food, listen to you tell them how you want it and what order and when you’re ready for you next bite. Now let’s hope they get all the crumbs off of you and especially that one that went down your top and is annoying the hell out of you. 

Your arm is uncomfortable where it is, get them to move it back, out, over so it’s in a better position for you. I hope you haven't moved your legs yet, because where they are is where they are staying until someone helps you to shift them. And it better not be hot where you are. It is getting them to lean you forward so they can fan your top so it stops sticking to your body. 

Oh look there is a message on your phone... hold on, you can't look at it. You need someone to get your phone, hold it up in front of you so that you can read it. The same if you want to view a paper or book - someone has to hold it up for you and turn the pages. Hate what’s on TV or the radio atm, tough!! Unless someone comes to change it, it’s stuck there. 

Want to go to the toilet? Don't ever leave it until the last moment or try hanging on. You have to allow time to call out to someone and them to come, get bottle or hoist (depending on what you’re doing), move/remove clothing then you and go. Same with shower. You will get hoisted onto bed, clothing removed and then transferred to shower chair, wheeled in, washed by someone else, dried, hoisted back to bed to get dressed. If you then stay in bed you can't move. You have to get the other person to move your arms, legs, head etc to a comfy position. Then if you want to roll onto your side or back, you have to get them to do that as well. 

When going out you have to have someone with you all the time. You would never want to have any issues with privacy, because whoever is with you is going to know your pin number because you can't key it in and it’s ok to say you will use cash, but how are you going to get it without someone to do that for you either. 

Now if you can do even some of this with another person for an hour or 2, I can almost guarantee that by the end of that time you will have yelled at them for not moving something right or not being quick enough. But chances are you moved to do it yourself or show them and this isn't an option for someone with a physical disability. 

Then if you really want to get a good handle on things, set your alarm for every hour. Hop out of bed and walk to your spare bedroom or kid’s bedroom and then back to bed. That’s 1 night, try and see how many nights in a row you can go and still function the next day. 

Everything you do and every move you make during the day and night is something that Ryan and boys like him can't do. Everything you do and every move you make during the day and night is something that parents/carers have to do for them as well as their own movements and activities. 

Physical disability does not mean intellectual disability. 

Another thing I would like to add - If you see me (or any other parent/carer) and I am grumpy or unsociable. Its not because of something you've done. Its more likely that I am tired or worn out. I normally have 1 day a week  when Ryan goes out or weekends  and I can do things on that day which normally include such things as hairdressers, donating blood, catching up with friends, drs apts etc. Every time he goes into respite I end up spending the week doing the things I can't get done in that one day instead of resting. Peter is fantastic and helps heaps but also has his jobs to do, so can't be here all the time.