ireallylikesculpture

What led up to your diagnosis? I have a little boy who is coming up to his first birthday but is falling behind on almost all of his developmental milestones and has particularly low muscle tone. Most kids are starting to walk now and he cant even crawl or roll consistently. Hes under physio and we are waiting for more detailed tests at a childrens hospital, certain 'theories' behind his issues are being whispered, DMD included but I just wish I had answers.

Thank you for taking the time to respond. Right off the bat my kid was 'difficult', he was and still is very weedy. Was in SCBU for a week in hospital, then at 6 weeks started having seizures and diagnosed with epilepsy, thankfully now controlled. We all thought it was the seizures that had knocked him back but now we're not so sure. Its looking more and more likely that his future will look slightly different from other children but to what degree I don't know yet. Its just a waiting game. Shit luck with kids really, his elder brother is on the spectrum and their little sister died before she was born last year after wrapping herself up in her cord but on I must march for the living ones! They're loved, and happy and that's as much as I can hope for.

Thank you so much for taking the time to respond :)

I'm a support worker for adults with physical and mental handicaps and behavioural problems. How do you maintain being constantly positive? Is it not human nature to sometimes be a bit down? In my work we encourage our service users to respond to their experiences with a reasonable and appropriate response - for example if the car has broken down and we can't go swimming that is a bummer and whilst it's not OK to throw a dining table across the room and bang your head against the wall until it bleeds - it is totally normal and expected to feel upset and disappointed and also on a more broader scale there will be negative emotions to be expected living with a mental and physical, potentially life limiting disability - I can't begin to count how many times I have heard 'Why am I like this?' or 'I wish I was normal'. A large part of our training focuses on how to support service users experiencing negative emotions as a result of their disability, their living situation, their place in the community and their relationships, and it would be completely wrong to suggest they take on a more positive attitude because feeling a bit shit sometimes is totally normal - and we are after all encouraging them to lead the most normal life they can. Do you think the support from your family and friends helps you maintain your positivity and do you think without their involvement in your life you would the same character?