Grandparents of T1D Kids


Grandparents of T1D Kids

The purpose of the Grandparents of T1D Kids group is to provide emotional support for each other and to identify our educational needs and sources so that we can:

1) Develop more self-confidence in dealing with our "new normal" world

2) Provide more effective emotional support for our children as they care for their T1D children

3) Become better caregivers for our T1D grandchildren

4) Meet, listen and mentor grandparents of newly diagnosed T1D kids

We want our group members to share their experiences, ask questions, provide ideas and opinions, start discussion topics, etc.

NOTE: The information we share is not intended to be prescriptive or to act as a substitute for the specific medical advice given to our family members.

Members: 27
Latest Activity: Dec 14, 2014

An Open Invitation to Grandparents & Parents

As grandparents and parents we experience the joy and happiness of having children and grandchildren. We experience the sadness and pain that comes along, too. A Type 1 Diabetes (T1D) diagnosis certainly provides us with challenges we had not imagined. In the hierarchy of families, we, as grandparents, need to be strong, rational and caring. We also need to be open and proactive to learn how to become caregivers emotionally and physically.

The reality is we have to put our needs aside to help ensure the well-being of our families. So where can we turn to help us deal with our situation – our “new normal” world? One answer to this question became the genesis of the Grandparents of T1D Kids group. We need to support each other to become better at helping our families and ourselves.

With the wonderful support of JDRF Austin, we started a grandparent group and held our first meeting this spring at the Type1Now Conference. With 22 people in attendance, we had an active discussion about our experiences, concerns and needs. Since then we have established an email forum where we share information among the group members.

As an added benefit, Manny Hernandez, President of Diabetes Hands Foundation (DHF), attended and spoke at the conference. He encouraged us to grow our grandparent group without borders. To that end, we are using DHF and its organizations, Diabetes Advocates and TuDiabetes, as vehicles to attract new members and grow to meet our goal of enabling grandparents to be proactive participants in the T1D world.

Please join us. Actively participate. Invite others to join us.

An Open Letter: TuDiabetes%20Open%20Letter%20to%20Grandparents.docx

Diabetes Forum

Advice to Grandparents of kids newly diagnosed with Type 1 diabetes.

Started by BeBe. Last reply by Anita Apr 23, 2014. 5 Replies

I hope this discussion can offer some help to Grandparents just beginning this "new normal". Please take a minute and write a brief note to anyone searching the internet to find out how to cope with…Continue

Guiding Principles for Grandparents of T1D Kids

Started by Jay (JJ) Sep 8, 2013. 0 Replies

Experience is a good teacher. Hopefully, the following guidelines, based on our group's experiences, will help grandparents of newly diagnosed T1D kids adapt to their “new normal” worlds:1. A T1D…Continue

Tags: guidelines, principles, guiding, grandparents

Family Dynamics

Started by Jay (JJ). Last reply by BeBe Jun 29, 2013. 1 Reply

How the family reacts to a T1D diagnosis and beyond is a key part of the "new normal". My wife and I and our son-in-law's parents all participated in the training at the hospital. Our children were…Continue

Your Role as a Grandparent

Started by Jay (JJ) May 3, 2013. 0 Replies

What role are you playing in your family's T1D world? How have you communicated this with your family?With all of the family dynamics (geographic proximity, relationship quality, time availability,…Continue

Tags: role, family, grandparent

Comment Wall


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Comment by Mimi on September 8, 2013 at 11:26am
A message from Mimi to all members of Grandparents of T1D Kids on Diabetes community by Diabetes Hands Foundation: TuDiabetes!

I would like to say how blessed we are today to have the ability to easily access others living with the "new normal" of a grandchild/child diagnosed with Type1 Diabetes. When our daughter was diagnosed some 35 yrs. ago,at age 11, we immediately entered an alien, isolated world. Pam went through middle school, high school, & college, as did her family right along with her, encountering briefly only 1 person with the disease. Of course we did not have the Internet either. I could not begin to tell you the loneliness & fear I felt as a mother to be told by a doctor that my child faced kidney & heart failure, blindness, amputation and at least 15-yrs. deducted from her lifespan. Pam had a fantastic doctor, but he could not be a confidant in the middle of the night, or a shoulder to cry on. The most personal lift he gave me was to tell me that I should concentrate on being Pam's mother and to let him be the "bad guy" to get on her if she did not take care of herself properly.

All of the above is my way of saying to you all, especially grandparents, of which group I am now also a part of with my granddaughter being diagnosed with Type 1, take advantage of what is available to you in the way of communication through this wonderful grandparent's group. As a grandparent, I am not only concerned with my grandchild, but also my grand child's parents.

Thank you, Jay, for recognizing the need that exists and for encouraging grandparents in that they CAN be a major means of support to their children and grandchildren.
Comment by patrick's namaw on August 16, 2013 at 9:52pm

My Patrick (grandson) was 27 months old when he was first diagnosed type 1 D. That was almost 18 years ago. My daughter became immediately proactive and for 14 years she managed to head off every crises. Then Pat's 12 year old sister was diagnosed in August of '09, their dad walked out and a few months later Patrick was diagnosed with Multiple Sclerosis. After this Patrick's health issues really began to deteriorate. He has developed an idiopathic pancratitis in the last 2 years, with 7 ICU admissions. The two diabetic children react completely differently to their disease. When he was younger his sugar highs and lows were more predicable and easier to control. Dee's sugar highs and lows have been very difficult to control and with the onset of menstruation her sugars are off the charts for a week. This has required my daughter having to stay home to care for her. We pray a lot and hope for a cure. The MS...well that is something this grandmother still hasn't wrapped her mind around yet. I wonder how could this be? hasn't this beautiful boy suffered enough just being diabetic. i can tell you it has tested my faith. I have tried bargaining with God. Give me the Diabetes. Give me the MS.Please .....let my children go from these terrible diseases.

Comment by Jay (JJ) on June 29, 2013 at 6:03am

No apologies needed. See the discussion above.

Comment by Barbi on June 29, 2013 at 5:55am

Apologies - I used the wrong box! On another topic, whem my grandson was diagnosed, I did all the training at Children's with my family and while completely overwhelmed, I felt I could at least help out. It hasn't turned out that way because my daughter and son-in-law are extremely diligent in their care of their son and have a need to keep him close. That saddens us because we used to have him and his sister overnight frequently and now, we don't. We still see them often but it is not the same. Perhaps in time, things will change when he is better able to manage the disease himself - which of course, is the goal.

Comment by Jay (JJ) on June 29, 2013 at 5:51am
To All: please note that for discussions we should use the Discussion Forum box above. It groups together the responses to each other.

Keep posting your experiences, questions and feelings. We're here to share.
Comment by Barbi on June 29, 2013 at 5:50am

That is just great, Grandpa Bob! YOu must be so proud of him! My grandson has a lot of people around him who care and he goes to a school that encourages him to share his disease (and pump lessons) so that has helped him tremendously. I am familiar with Celiac as well as my grandson's sister (granddaughter in same family) also has it. These two diseases run closely together in families, unfortunately and I must say that Celiac is much easier to manage than T1!

Comment by Jay (JJ) on June 29, 2013 at 5:49am
Grandpa Bob, that's a great story and lesson for us all. Thanks for sharing. That's exactly what we'd like to share and discuss in this group.
Comment by Barbi on June 29, 2013 at 5:45am

Comment by Grandpa Bob on June 29, 2013 at 5:15am

I have an 8 year old Grandson with type 1, who was diagnost at age 3. He also has celiacs and has been very shy about his diseases and therefor not very social with meeting new people. Things changed this spring when I started taking him fishing, he has mastered the art of fishing and started to talk to all the fellow fisherman at the lake. He now is starting to be social to other new people he meets as well. He has a pump and is no longer shy about showing it to people. The moral of this story is get your grandkids out from in front of the TV or internet games and find an outdoor activity that can build confidence, It has worked wonders for my grandson.

Comment by Grandpa Bob on June 29, 2013 at 5:01am


Members (27)




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Diabetes Hands Foundation Team


Melissa Lee
(Interim Executive Director, Editor, has type 1)

Manny Hernandez
(Co-Founder, has LADA)

Emily Coles (Head of Communities, has type 1)

Mila Ferrer
(EsTuDiabetes Community Manager, mother of a child with type 1)

Mike Lawson
(Head of Experience, has type 1)

Corinna Cornejo
(Director of Operations and Development, has type 2)

Desiree Johnson  (Administrative and Programs Assistant, has type 1)


Lead Administrator

Brian (bsc) (has type 2)


Lorraine (mother of type 1)
Marie B (has type 1)

DanP (has Type 1)

Gary (has type 2)

David (has type 2)


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