Speaker Spotlight - Joe Solo

Joe Solowiejczyk spoke at Thriveabetes in 2015 and was a huge hit! And I have been under strict instructions to make sure that he was speaking again at Thriveabetes 2016, which he is. Phew! I don't have to go into hiding.

For those of you who are yet to become familiar with Joe, he has lived with type 1 diabetes for 50+ years. But he is also a registered nurse, certified diabetes educator and family therapist.

Joe works extensively with both patients and professionals on the Family-Approach to Diabetes Management. He works with paediatric patients and their families to help them cope with their child’s diagnosis and daily challenge of living with diabetes. He designs educational and counselling programs for both children and adults with diabetes.

His ebook “A Type 1 Guide to the Universe”  introduces a new way to learn to thrive with diabetes. It is the first book to integrate the psychological and emotional aspects of dealing with diabetes into the core of its approach.

 Joe is scheduled to co-present with our parent advocate from the UK, Penny Robinson on how to advocate for your child with diabetes.

Welcome to Type 1 posted this video of one of Joe's presentations so you can see for yourself what you will experience at Thriveabetes 2016.

Register for Thriveabetes

Thriveabetes 2016 takes place on Saturday 1st October in Naas, Co. Kildare. Registration is open now and you can read more about our speakers here.

Diabetes Families Trip to Trabolgan

Roisin Keegan is a member of the Diabetes Ireland Sweetpea Kidz Club committee for just over five years and volunteers on the annual Family Trip to Trabolgan. She is a person with type 1 diabetes herself and is also a member of the Dublin Type 1 Diabetes Support Group, in fact, she organises a lot of their events and is one of the admins of that group and of the Diabetes in Ireland group. I asked her to tell us about her experience volunteering with the Trip to Trabolgan which took place last April. This is what she wrote;

Everyone living with type 1 (T1) diabetes understands the importance of social support and the feeling of fitting in, especially for a young child living with the condition. The Sweetpea Kidz Club (SKC) is a voluntary run organisation for children up to 12 years living with T1 diabetes and their families. The organisation aims to bring together and support others living with the condition in a fun filled, family orientated environment through summer and Christmas parties. One event in particular that we always look forward to in the SKC is the family weekend trip to Trabolgan in April. Not only can a child living with T1 have opportunity to meet other children in the same position but it also allows parents and caregivers to talk endlessly about all things T1 with other parents and learn valuable information from workshops run by health care professionals such as paediatric endocrinologists, diabetes nurse specialists, dietitians and clinical psychologists.

When families first arrive they gather together in the sports hall situated in Trabolgan village and meet the team of volunteers which will support and look after the children during the activities. The majority of the volunteers who help organise the event also live with T1 which helps put parents at ease when going their separate ways to attend workshops. Some of the volunteers were even “Sweetpeas” themselves at one time and are delighted to come back and help out! The children are take part in art activities, games, catch up with old friends and of course make new ones. Parents are brought to a quieter location and given an induction to the weekend ahead. They are asked what they would like to discuss with the health care professionals or what they would like to discuss amongst themselves in an open format. This time also allows for parents who are new to the event to link up with other families who are happy to give some guidance throughout the weekend.

The next morning as you can guess is Go, Go, Go! Each family can decide for themselves if they want to go for a swim and everyone meets back at the sports hall at 10am where children are given snacks and are divided into groups. The children are entertained with a wide range of activities such as football, jungle gym, art activities and face painting while their parents meet in a less hectic setting!

As you can imagine, there’s a lot of running around and with that comes a lot of blood glucose testing and breaking for snacks and Lucozade! The children are given support and guidance by the volunteer team to test with their own meters and take snacks.

During this time the parents gather in the Cove for three different talk workshops. The first is where the health care professionals give presentations and take time for questions and answers. Other guest speakers include two individuals who share their own personal experience growing up with T1 diabetes. They speak openly and honestly about what helped and how T1 impacted their lives during different life events such as going away or staying with friends, participating in sports or changing from injections to pumps etc.

Another of the parents  workshops is where they share their own experiences  with a wide range of  topics such as schools, clinic appointments, different treatments or any issues they have which is valuable to every parent sitting in the group. Parents find this time useful to give and get advice from others and swap stories which they do not often get when going to hospital appointments or other family events.

I have been part of the Sweetpea Kidz Club committee for just over five years and overall I believe Trabolgan is an encouraging and worthwhile family event. Each family takes away something positive and constructive, whether it’s the chance to bond with others or learn something new. The opportunity for the whole family to spend time together in a fun and enjoyable environment in which T1 diabetes is not only a gravitational pulling force but also the reason for the growth of confidence, education, support and opportunity.

Thank you so much Roisin, for taking the time to write such a lovely piece.

If you would like to learn more about the Sweetpea Kidz Club or the Annual Trip to Trabolgan contact Diabetes Ireland; Phone:  1850 909 909 or Email: info@diabetes.ie

Letters of invitation go out to all family members of Diabetes Ireland to announce this event. However this year, due to funding limitations Diabetes Ireland could only invite 20 families on the trip in 2016. If you, or anyone you know, would be interested in offering more families the opportunity to attend this event please contact Gary Brady, Fundraising Manager Diabetes Ireland.

Thriveabetes 2016 takes place on Saturday 1st October in Naas, Co. Kildare. Registration is open now and you can read more about our speakers here.

A Newly Diagnosed Family's story

This week we have a story from Marie Ronan, from Co. Meath, whose son, Jack age 8 was diagnosed just 15 months ago. I met Marie, briefly, at last year's Thriveabetes but we have been in touch quite a bit since. She has a very eloquent way with words, so I warn all the Mammy's & Daddy's out there that when you meet her at Thriveabetes 2016 you will just want to rush up and give her a great big hug.... but get in line behind me!

Marie's story;

I decided to write this 15 months on from diagnosis. I feel ready to share the story of our first year living with diabetes and how it has impacted on my little family of 4. Back in January 2015 my son Jack – a lively, “healthy” sweet 7 year old began to fall ill without explanation and every instinct I had was telling me that something was wrong. He was still functioning but his colour was fading and the afternoons became filled with naps and nights full of trips to the loo. I was 8 days over major surgery when I returned home and realized this was no growth spurt or childhood illness. As we were driving to the doctors, I remember calling my sister in law and telling her that I thought Jack had diabetes. She reassured me that it would be ok – she has T1 herself but I knew in the pit of my stomach our life was about to be turned upside down.

From there it’s a bit of a blur – rushed to Temple Street, going straight through A&E, confirmation that my gut was right, watching my husband break down in the corner of the emergency department where he couldn’t be seen. That night I cried for what I knew was ahead but I was also eternally grateful. I was grateful that we knew what it was and how to treat it and that we had caught it early so there was no irreversible damage done. I set out my stall of blessings and counted each one whilst desperately ignoring the growing dark cloud of fear and anxiety that was forming. But my husband and I made one decision that night that has stuck with us – that it would never be a reason why he wouldn’t live/succeed/flourish and thrive. We would fight from that night onwards to ensure Jack learned to live with diabetes and not that his life would be ruled by it.

Our first year of diagnosis has been a whirlwind of carb counting, pump training and re-learning the signs that my son is struggling. After a few weeks I decided to go back to work because I was desperately trying to show him that this diagnosis wouldn’t rule over our family – that we would continue to flourish regardless and that this would become an extension of our current lives. This decision was only possible because we had the amazing support of my sister who cared for both Jack and Millie. She learned with us every step of the way and all of our family took our lead to ensure Jack felt no different.

During this time Jack didn’t miss a soccer training session or a swim lesson or a playdate. Myself, my husband and my sister have worked tirelessly to ensure that we planned ahead, carb-counted ahead, pre-trained ahead anybody who would be coming into his life. He showed up for summer camps not thinking for a second how coincidental it was that his new trainer had a pack for a hypo already prepared and knew his routine off by heart. When he stood up to take a lead role in his school play I cried with pride. I cried because nobody knew that he had battled hypos all day because of his stage fright or that he was still getting used to his pump and his costume choices had to work around it! I sat back and watched my baby boy take to the stage with a newly gained confidence. A confidence that had grown in the knowledge that he had been knocked down but he got back up, that he would have battles ahead but that he had won so much ground already, that he had so much more to consider when planning his future but for now, for this moment he was Jack, 8 year old football fanatic with a wicked sense of humour and a twinkle in his eyes.

I have learned with this chronic illness that so much of it is hidden from those not dealing with it. Our little family battles every day whilst our extended family & friends look on unaware – a constant balance of tweaks, considerations, guilt ridden reviews of trends and data, half-sleep filled nights worrying about night sweats and hypos, ecstatic days of feeling we have nailed it followed loosely by tearing our hair out trying to understand a sudden high or low, of anxiety ridden waits for Hba1c results and painfully condescending questions from consultants, desperately trying to make sure that my 5 years old daughter Millie feels like part of our journey. And so we find ourselves here facing into the storm every day but working hard to remember on occasion to lift our heads to see how far we have come from that late afternoon in early Feb, to celebrate our little wins and our big milestones. I asked Jack recently if his diabetes was a big thing or a small thing in his life….. he told me it was a little thing that gets bigger some days but other days it stays small. I couldn’t have said it better myself.

This has been our journey, it will be different to yours and no better or worse. My only advice to you is to breathe…. Breathe out when you want to cry from tiredness, breathe in when they get through a match without a subsequent hypo, breathe out when somebody tells you they will grow out of it, breathe in when they nail their crab counting ratio, breathe out when your HBa1c numbers aren’t good, breathe in when they make a new friend and proudly show off their pump. Take it day by day and sometimes hours by hour and breathe.

Thank you so much to Marie and her family for sharing with us.

Thriveabetes 2016 takes place on Saturday 1st October in Naas, Co. Kildare. Registration is open now and you can read more about our speakers here.