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Dear Emily
My advice is to sell and buy a house on one level or put a lift in the house for him to get up and down. My understanding is that stairs are one of the worst things these boys are subjected too. Up is bad, but the sudden jolt and impact going down is worst. I am absolutly non negotiable on stairs, let them live as normal a life as possble, I have got everyone carrying them up and down stairs, seems crazy and you get strange looks from people who do not know. I can imagine them thinking, look at that bot with the huge calves being carried by his Dad.
As for keeping him informed, I feel it is very important, as he needs to know he has a limitation and also that he shoud not do things like stairs and long walks, so he too can protect the muscles from deterioation. We have given him some infomation on his weak muscles, and the importance of looking after them by not exerting himself, the other issues we will discuss when he asks. Honesty with the relevant facts around his milestones are our stratergy.
Good luck and don't forget to make each day count.
Colin
J's mom said:
Wow, thank you all for all of your wonderful replies. It's extremely helpful to know how others approach this! I imagine my worry and fretting over it is probably a little worse than how our actual conversations will go. I definitely like the idea of him hearing this from us before his peers....very, very good point. Even though he may not think he is different, his peers are starting to notice, so it's best that we prepare him for that. Thank you again for all of your insight!
I have another slightly related question if any of you have time. We have a two story house, and Jake has just recently started wanting to go up and down the stairs quite a bit. In the past, he just never did. If he wanted something, he would just ask us for it, and he didn't really have an interest in going up the stairs himself. But, recently he has started wanting to go upstairs to find a toy, go see his brother or his dad or something. I don't want to limit his independence, but I was thinking I just need to explain why it's not good for him and ask him to go down on his bottom or something. Anyone else have any good solutions? Do you just keep reminding them that it's not good for their muscles to go up and down the stairs? Have they been OK with this?
Thank you again! It has been so helpful to hear from others who have gone through this!
I really know how hard it is, with how to talk with your child. I've been in that position many times, and it doesn't get easier as life goes on. There are always things that are hard to tackle but ultimately only you will know what to say and when to say it. We've had professionals saying to us that they thought we were protecting our child, but actually part of them needs protecting (to a point - and that point is different with each case). All I can say is, 'that point' should be guided by what your child needs (rather than what you need, or what you're scared of). There will be times when what you're saying will be upsetting, and we as parents have to be strong with that, and as long as you're there with open arms and with love, and teach them from a young age that what's important is what's inside, then that's the protection they need (support with the hard things, rather than not saying them). Hearing the hard things, aren't so hard with love in the background and when that child feels loved (which all of our children do), it will make dealing with the hard things easier. The incremental steps in which you choose to go, are dependent on when he's ready to hear more (it sounds like he might be). With our boy, we said to him from the beginning 'you've got muscular dystrophy' which meant if anyone asked him things or picked on him (they didn't often at all) but if they did, he could say it's my muscular dystrophy. Having a name made it much easier for him. He didn't mind having muscular dystrophy, as it made him 'special'. We also explained how some people are better at maths, some people are better at sports and that everyone has things they are good at. Our boy was really good with computers and maths, so any time he felt he wasn't as strong as the other boys, we'd say 'but look what you are good at' I don't know if that helps at all? Good luck with everything
Be honest! My son is 23 yrs. old and I have always been honest with him, how can you not be, they are right there in the room during clinic visits. One friend I know wasn't honest with her son, when he was getting closer to his teenage years and started asking questions when he noticed the weaknesses setting in ( wrong age for a child to find out his parents haven't been truthful )......now he is so mean to his mom, disrespectful etc.. My son is happy, strong, my strength and deals with having Duchenne very well. Another way to help you look at the picture of what to tell your son.....children who have cancer know the truth, how can they not when they are amongst all the Dr.'s, nurses, other hospital staff and other children having their chemo treatments and their families at Children Cancer Treatments Hospital Centers. Young children do not understand dying in the same concept that we adults do. Be honest, as it will benefit your child to hear it from you then from someone else that may blurt out what he has and what happens with the disease. Adam has been in tune with his body and the weaknesses when they happen and he has been the one to direct me and his Dr.'s what he needs next to help him as far as adaptive devices. Also, don't over protect, keep him busy, allow him to do as other boys do his age, if he falls allow him to brush himself off and start all over again, as Adam taught me this as you will need this advice in the roller coaster ride you all have ahead of you......emotions, isolation, disrupted sleep, the list goes. Adam just eats a healthy menu everyday ( none of this Royal Bee Jelly stuff, herbal remedies.....think it is a genetic chromosone disease...the biggest chromosone in the body....think if it worked everyone would be cured ), he isn't much of a junk food eater, keep shoes on them as this helps promote their ankles and feet turning inward or outward ( he never wore leg braces, tried them, he didn't like them ), keep him out in the public everyday, laugh everyday, don't think you are whacked you will cry, you will be afraid and scared.....it isn't a easy road but, our boys make it worthwhile!!! Notice most of the families on here have younger boys than my son.
Check me out on Facebook and MySpace as I support our cause on both sites...using any avenue I can to spread awareness and help raise funds for our boys!
Adam's mom Cheryl Markey
Be honest! My son is 23 yrs. old and I have always been honest with him, how can you not be, they are right there in the room during clinic visits. One friend I know wasn't honest with her son, when he was getting closer to his teenage years and started asking questions when he noticed the weaknesses setting in ( wrong age for a child to find out his parents haven't been truthful )......now he is so mean to his mom, disrespectful etc.. My son is happy, strong, my strength and deals with having Duchenne very well. Another way to help you look at the picture of what to tell your son.....children who have cancer know the truth, how can they not when they are amongst all the Dr.'s, nurses, other hospital staff and other children having their chemo treatments and their families at Children Cancer Treatments Hospital Centers. Young children do not understand dying in the same concept that we adults do. Be honest, as it will benefit your child to hear it from you then from someone else that may blurt out what he has and what happens with the disease. Adam has been in tune with his body and the weaknesses when they happen and he has been the one to direct me and his Dr.'s what he needs next to help him as far as adaptive devices. Also, don't over protect, keep him busy, allow him to do as other boys do his age, if he falls allow him to brush himself off and start all over again, as Adam taught me this as you will need this advice in the roller coaster ride you all have ahead of you......emotions, isolation, disrupted sleep, the list goes. Adam just eats a healthy menu everyday ( none of this Royal Bee Jelly stuff, herbal remedies.....think it is a genetic chromosone disease...the biggest chromosone in the body....think if it worked everyone would be cured ), he isn't much of a junk food eater, keep shoes on them as this helps promote their ankles and feet turning inward or outward ( he never wore leg braces, tried them, he didn't like them ), keep him out in the public everyday, laugh everyday, don't think you are whacked you will cry, you will be afraid and scared.....it isn't a easy road but, our boys make it worthwhile!!! Notice most of the families on here have younger boys than my son.
Check me out on Facebook and MySpace as I support our cause on both sites...using any avenue I can to spread awareness and help raise funds for our boys!
Adam's mom Cheryl Markey
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