My son is starting to show some signs of depression and we are looking into counseling for him, as well as for our family. Googling this brings way too much information, and although we are using other resources to find a good fit. I wanted to ask anyone if they have found a good counselor, or therapist to help with families that are dealing with duchenne. I want to find someone that would better understand the stages that we are going through, and help my son get through his emotions before it gets to be too much. We live in Lockport, so anything within 20 mins would be best. Thank you

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Well, you aren't alone!  We just found our 7 year old one and he went for his first visit a week ago.  She seems great and has a lot of great ideas.  She doesn't have any experience with DMD boys, but does with kids who are facing an illness.  She is giving us some great tips for school. 

 

We live in Rochester so our therapist wouldn't work for you.  We asked our pediatrician for a recommendation and we found from there!  Our clinic wouldn't help recommend us so we thought maybe we were alone in needing a counselor!

 

Also, Brayden's counselor in school brought him down to a self esteem group that he loved going too!  It wasn't just DMD boys obviously so he got to see that he isn't the only one facing challenges daily. 

 

Good luck!

Thanks, sometimes just knowing you are not alone helps so much.

 Ben is seeing his school counselor too, she is wonderful, but it is still more for social interactions and being a part of school. We recently talked with Ben about some of the not so easy topics of this disease, including life expectancy, and it, of course, impacted him hard. He is having trouble expressing his feelings, and seems to be keeping it all in. I don't ever want this disease to stop him from being a happy boy that can live his life to the fullest. We are going to the peditrician this week to get referrals as well. I hope that we can find someone that works for our family.

Good luck!  I hope he can find happiness too!  That is what we want for Brayden!  How old is Ben? Brayden will say, "How come Nathan (his brother) doesn't have to stretch!?" and stuff like that.  It is so hard to answer!
Heather, I do not know if she has any experience with Duchenne, but there is a child psychologist named Theresa Jaworski in East Amherst. Her phone number is 204-0100. I know of at least one other mom with a special needs kid who sends her daughter there. Worth a phone call! Good luck.

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