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©2017 by CHAMP1 Patient Support Group. 

January 29, 2018

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He is our champ but we still have to fight!

March 23, 2018

We no longer live in the world of being undiagnosed and for that I am truly grateful. We have our support network, those who were there before our diagnosis and remain beside us on our new journey. We now have all of our other champ families who are walking on the same path as us with our champions that guide the way. With the diagnosis comes a whole new set of questions that unfortunately there aren't many answers. So we continue on our new journey doing the best we can with the information we have. 

 

We continue to fight. Fight for services our children need and deserve. But as always, I ask myself why? Why is it always a fight with the professionals for us to get what our children need? I have a meeting next week to ask (again) why my non verbal child doesn't receive speech therapy! He uses an AAC device which again I had to fight for him to try. He uses this device well however technology shouldn't be the only answer.  He uses some of his own versions of makaton and has some words, not many and not all are clear. As the years have passed he has added more sounds/words to his vocabulary (no thanks to any therapist I'd like to add). A short while after he was given his AAC device he was discharged from a service that should have continued to support us. We were told that he wasn't completely discharged and we could always ask to be reassessed. I've had several discussions with these people and have asked for this to be looked at again.  I didn't get the outcome that I wanted.  I have yet again another meeting and this time I'm not taking no for an answer. 

 

We are told we are now the experts on this diagnosis by our geneticist as we have our support group. We hold the knowledge within our champ community and we are seeing progress with the right intervention. They say knowledge is power and in a world of so many unknowns, we know our kids inside and out and we need to be heard. Listen when we say, we know what they need. 

 

So although they are champs the fight still goes on. 

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