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  • #202434
    Plate spinnning

    Hi I haven’t reached out to the charity for some years. My son Jack is 16 now and was diagnosed at 3 and a half. The first few years was like wading threw treacle but until recently we’ve been doing well. I have so much going on and I’m shit scared I’m going to cock up and ruin my sons life. Firstly PIP, secondly begging for transport to get him to college and now we’re moving into a council house which is being renovated while he’s doing his exams.his whole future is as usual at the mercy of other peoples decisions.I’ve let him down, we’ve worked so hard as a family to get him where he is and now I could write the wrong thing and it could all go horribly wrong.

    Posts: 0
    Joined: 25/03/2022
    Reply To: Plate spinnning

    Hello Orchard. I think you have encapsulated what all of us have or will go through for our children , or indeed for myself. The saddest thing I believe, and one which we have all found, is that we have to fight for everything , not just be given it as our right. MDUK have been marvellous activists on our behalf, but many of us have found everything from consultants to councils at times not giving the help they should. But please do not blame yourself or worry about the future. You have got hime this far and from you have said he seems to be doing well. I have known a number of young people who survived exams and moving house. As for PIP that is another minefield altogether. My number 2 son, who has FHSD like me, had his taken away from him because the examiner out and out lied on the report. Almost 18 months later he got it all back with out a fuss, and with interest. I should add that he now owns, and I mean owns his own house, and runs his own very successful business. Much of that he achieved himself. I will be the first to admit I got things wrong, not least of which being the original diagnosis, which we both thought was a consequence of him being lazy and not sitting up straight, as opposed to GHSD. All the more embarrassing as I worked as a clinician at the time.
    You have not let him down. Bringing up children is difficult to say the least. But you have done your best. You have fought for him at every step of the way, and if you make a mistake it can always be corrected. But I would also urge you to use the support that MDUK can offer if you feel you are struggling with something. They have been an amazing resource for me.
    There are of course on line support groups if you need them, and I am sure there will be support groups advertised at the hospital where you go. I have also found that you may get very wet sometimes swimming upstream, but it does build strength for when you face the next challenge. WE are always here if you need us. Come back and tell us more.


    So many love songs, so little love.

    embayweather embayweather
    Posts: 8
    Joined: 02/11/2015
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