support

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michelle Posted: Wed, Aug 5 2009 5:45 PM

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Hi

I am the parent of an 8 year old boy who was diagnosed with T1 in March 2009. I was wondering what types of support there are out there for parents and children. I feel like I have finally gotten my son's physical needs taken care of, but sometimes I feel really alone in this. Does anyone have anything that has worked for them?

Thanks,

Michelle

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jmarkowitz replied on Fri, Aug 7 2009 9:36 AM

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Hi Michelle,

I am filling in for Debbie Butler, LICSW, who usually answers these posts from Joslin.  One good resource is the Juvenile Diabetes Research Foundation (www.JDRF.org). They have local chapters and can help you connect with other families with children with diabetes.  Another good resource is The Barton Center (www.bartoncenter.org). They run summer camps for kids with diabetes, as well as programs for kids and families year round.  Another resource is Childrenwithdiabetes.com.

Good luck!

Jessica Markowitz, Ph.D.

Psychology Fellow, Pediatrics

Joslin Diabetes Center

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tylersydney replied on Sat, Aug 8 2009 5:08 PM

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Continue to use the Message Board.

I have seen many folks get answers and /or support from others, both Diabetics and Professionals from Joslin..

Keep asking..and best of luck with your son...

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Debbie Butler replied on Tue, Aug 11 2009 10:19 AM

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Hi Michelle, I was away last week and Jessica Markowitz, PhD, was filling in for me.  I agree with everything that Jessica wrote. I also wanted to let you know about a few other resources.  JDRF has a social networking site at http://juvenation.org/user/cs_jdrf_home/  and the American Diabetes Association also has a family link site: www.diabetes.org/families On the children with diabetes.com website there are also chat rooms: http://www.childrenwithdiabetes.com/chat/ and forums: http://forums.childrenwithdiabetes.com/  Children with diabetes.com also runs national events and conferences that you may be interested in: http://www.childrenwithdiabetes.com/activities/ 

It can be extremely overwhelming when your child is diagnosed with diabetes.  If your son was diagnosed in the spring you have probably survived the "crisis" period and it is probably starting to sink in that the diabetes is not going away.  I hope you are able to find the support that you need. You may also want to ask your son's diabetes health care team if they run any parent groups or events so you can connect with other parents in your area.  You may also want to ask if they can recommend a counselor that specializes in diabetes to discuss the emotional side of being a parent with diabetes.  Good luck and keep coming back to these discussion boards as well!

-Debbie Butler, MSW, CDE

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Heidi Lahey replied on Sat, Aug 22 2009 7:48 PM

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Hi Michelle- my daughter was diagnosed over 14 years ago  at age 2 and I remember the feelings of isolation that I felt as we struggled to move forward with our lives and handle everything. It was very helpful for me to find other parents to share my thoughts and feelings with. In those days we didn't have the internet-we had a phone directory for families from our diabetes clinic and I called up a family in town- we became friends, our girls who had diabetes became friends, and it really made a huge difference in the quality of our lives- so I urge you to seek out contacts for yourself (and for your son) of families who are also living with diabetes. We formed our own support group for a while because one didn't exist in our area. It saved my sanity in those earlier years.

There were lots of good suggestions from others to find contacts- my daughter has just finished her sixth year at Clara Barton camp as an LIT and can't wait to return next year as a junior counselor. She thrives in the supportive atmosphere- and I love having her safe in such a great environment for learning to live well with her diabetes. And she was/is a shy kid who didn't make friends very easily! Keep looking and reaching out- you'll find the right match to help you on this part of your journey! Good luck! Heidi

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Hope replied on Wed, Sep 2 2009 10:06 PM

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I have a 13-year old son who was diagnosed with Type 1 diabetes at age 5. Our family found two lifesavers - 1.) Family camps at Clara Barton (when he was younger) and 2.) Camp Joslin. 

The family camps at Clara Barton (usually 1.5 days) were great for letting us meet other families, talk informally with knowledgable medical staff, and meet kids (counselors) who live with diabetes. I found the counselors most helpful because they were able to articulate what it is like to live with diabetes and what they found their parents did that was particularly “right” or “wrong”.  It was also heartening to see them dealing so successfully with diabetes.

My son loves Camp Joslin. Camp Joslin allows him to enjoy valuable independence, while feeling very comfortable. Outside of camp, he fits diabetes into a very active social, academic, and sports life in the lowest profile way. At camp, he doesn’t have to be low profile - everyone checks, everyone deals with highs and lows, etc. My son has made wonderful friends that connect with him on a level that is difficult to articulate.

As an aside, it gets a whole lot easier – you are in the trough. Best wishes and good luck!  

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malikeja replied on Tue, Sep 29 2009 10:04 AM

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Hi, I am a parent of a 14 year old boy with Type 1 diagnosed  2006. I am very interested in contacting Debbie Butler. I feel like a lot of advice you have offered on the boards is just what I'm looking for. My son currently sees an Endocrinologist at Children's. He is not comfortable with him at all and he does feel he is being lectured. My son is having a hard time recently. I would love to get in contact with Debbie. We have been thinking about switching his care to Joslin which my insurance will allow, I have already looked into it. Any info would be greatly appreciated!!

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Debbie Butler replied on Tue, Sep 29 2009 11:10 AM

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Hi I am glad that you have found these discussion boards helpful. Some families find do come to Joslin for a consultation and then decide if they would like to transfer care after the appointments.  If you come for a consultation with one of our medical providers, you could also book an appointment with myself or someone else from the behavioral mental health unit on the same day.  Most of the patients that I see are teenagers that are experiencing diabetes burnout.  It is very common for both teens and their parents to feel burned out from diabetes care.  If you would like to make some appointments then the phone number for the Joslin Pediatric and Adolescent Unit is 617-732-2603.  Good luck!

-Debbie Butler, LICSW, CDE

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malikeja replied on Thu, Oct 1 2009 9:01 AM

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I can't thank you enough. He is definitely experiencing burnout. I will call and hopefully will get an appoinment with you. Thanks again, I found all of your posts to be helpful!