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(07-30-2010, 10:06 PM)mummy_of_matty Wrote: Steve can also be very sensitive if he thinks someone is making fun of Matthew, and I often have to try and calm him down so it doesn't turn into aggression. He's a very calm person usually, but thats his trigger.
I think thats where i would struggle too in all honesty.
Is this something you come across frequently with Matty and when it does happen who usually is making fun Children i assume?
I was saying this to Lucy just the other day about Euan and Emilys school being really tollerant as its a mainstream school with a resource unit so the Children there grow up with disabled children around them and it benefits the Children growing up there as disabled people are just there all the time so grow up with a disabled freindly nature and i think resource units are great in that sense.
I actually think all schools should have one and i really think it would reduce the children making fund and being cruel like they can be.
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To be honest its not really making fun, its just people staring or generally being ignorant. Children are inclined to be honest to the point of being tactless, which is fine, Children will be Children, but its when its an older one, or when parents try and shush them and hurry them away without explaining. I'd far rather a child came up to us and asked why he was in a wheelchair, than say it to their parents in a loud voice and the parents rush them away like its something contagious.
I sent my youngest daughter to a nursery, that has several disabled children attending, using that as one of its plus points. Obviously shes around disability constantly, with Matthew and she often comes to his school with me for assemblies etc, in fact shes been attending physio sessions since she was a few weeks old! But I wanted her to experience it in an everyday setting, and realise that its not just Matthew and the people in his school or groups etc. These are also Children with milder learning difficulties, or hearing problems, and not the ones with severe disabilities like shes used to seeing, basically I wanted her to experience the different levels of it, and realise that everyone is different, yet can all work together (if that makes sense). I do like the idea of resource units in a sense, IF they are used properly. My nephew has ADHD and attends a school where their idea of SEN and a resource unit is to sit him in a classroom day in day out on his own.
Matthews school is having a new building built in a couple of years that will be attached to a mainstream primary school, and a lot of the parents have mixed feelings about it. Some are happy that it will give their Children a chance to mix, and hopefully bring disabilities into the norm, and others are worried about the bullying. I'm not thinking about it too much, Matthew is one of the Children who probably won't mix a lot, he certainly won't attend mainstream lessons anyway.
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Mum of Matty you are an inspiration. I was touched by your story and wish you and your family all the best for the future. x
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Thanks for sharing your story and insights and I hope you succeed in your struggle for home adaptations.

Daniel - My husband already had a strong suspicion of what Alex had before the neurologist confirmed it (he had been researching online and Friedreich's Ataxia fit all of Al's symptoms) My husband grew up with a disability himself and his mother has Cerebral Palsy so although he was upset he knew from experience that Alex could still have a fulfilling life. I remember him saying when we left the neurologist appointment that the physical stuff we can cope with we just have to hope that it doesn't affect his heart because there is nothing we can do about that. So when the cardiologist told us that Alex also had cardimyopathy it really knocked the wind out of both of us. My hubby is a lot better at staying positive but we both have our moments when we grieve for the childhood we thought Alex was going to have. Alex's future is uncertain and that scares us but we work really hard to not let the unknown paralyse us or we will miss the wonderful child we have.
Mum to Alexander (6) Friedreich's Ataxia and Hypertrophic Cardimyopathy
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(08-01-2010, 09:11 AM)Munchkin Wrote: Thanks for sharing your story and insights and I hope you succeed in but we both have our moments when we grieve for the childhood we thought Alex was going to have. Alex's future is uncertain and that scares us!
This is what really gets me and Lucy down is the wondering how things could have been and also when you see children of the same age doing stuff your child cant you have them moments of reflection Sad
Also Euans condition has so much uncertainty that it really keeps us on edge all the time and to a degree if we knew where we stood and that was it it would allow us to kind of move forward more but when we know its such a degenerative condition and it can be more so in some than others or faster in some than others but it will happen but when.
And also because people with Euans condition currently dont have a full life i find myself wondering things i shouldnt as so many people with the condition pass in there 20's and 30's and many younger than that.
So just knowing that really does keep you down.
Its funny because logic would say you should be out there enjoying every minute but im only human and those thoughts do hurt everyday and so how do you possibly get past that?
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