Back to School with type 1 diabetes

As I write this, I can't get that facebook photo from last year of the mother leaping for joy as her kids waited glumly for the school bus out of my head. That's me at the beginning of the holidays but there's definitely more joy at the end of the holidays. Somehow my response of “that's excellent news! Let me get my chores list.” to the “I'm bored” comment didn't go over as well as I had hoped :-( Back to school is upon us again. How quick the summer passes? New books, new classrooms, new teachers and for most it’s when parents dance with glee and even though, our children say the don’t like school, they are excited to go back.

But for parents of children with type 1 diabetes, it involves meeting the new teacher to go over your child's care plan or maybe trying to secure a special needs assistant for your child. It's having a new set of people to train in your child's type 1 diabetes. Because no two people with diabetes are the same.

I know a lot of the parents of children with type 1 diabetes in community groups have been exchanging valuable experiences and advice here in the private facebook group.

Here's a couple more resources that might also help with getting back to school. It's also worth mentioning that Diabetes Ireland Cork office run a Diabetes Teacher Training day every year in October that you can share with your school. You or your school can find out more about this by contacting the Southern Regional Office, Cork by phone: 021 427 4229 or Email: corkcarecentre@diabetes.ie

Back to school resources and planning

Inspiration for this post came from Diabetogenic.

Diabetes Ireland's Back to school Resource Pack.

Diabetes UK's Resources for Schools, Parents, Teachers and Students.

Beyond Type 1's The Caregiving Conversation

Raising the Roof and some Funds for Thriveabetes

I haven't done a blog post in a while because there was A LOT of this going on.

And it was wonderful. Then, it was back at it!

Freshly recharged from my holidays, and two days post jet lag, myself and Phil headed to Naas, Co. Kildare to the fundraising concert organised by Pete and Pam Kavanagh (she says it was him, he says it was her) for Thriveabetes 2018.

All I had to do was show up and say a few words, which was harder than it sounds, especially when you only put those few words together in the hotel room two hours before the concert. :-O

First, we had a Seat raffle for a gorgeous rose gold Citizen ladies watch worth €230 donated by jewellers Macintyres of Edinburgh, which was won by Launa, who without even thinking donated it back to Thriveabetes. The watch was then auctioned after the break and raised another €100.

Then, Date night truly began.

The Opening act was Pete Kavanagh and his guitar who was joined by the magical haunting voice of Pam, who many of you will know from the Diabetes Online Community. Before finishing their son, Cayden, who was diagnosed with type 1 diabetes 18 months ago, joined his parents on stage to give us the blues on his harmonica. See photos below.

Next we had “Hally and the Hymns”, who is currently undertaking a project called “Peeling Onions” where he releases one song and music video every week for the entire 2017.

After the break we were thrilled with the golden voices of the Cahill Sisters accompanied by their brother Mark, who sang songs I fondly remember from my teens. I truly look forward to hearing their own music.

Then, the Clare (via Kildare:-D) man himself, Luka Bloom, he has been formally adopted by Clare, whether he likes it or not, who raised the roof.

The DOC selfies.

A diabetes fundraiser is a great place to meet some of the diabetes online community and meet some new offline ones. This one was no different-I wasn't out of the car park when I bumped into my first DOC’ers of the night :-)

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Missing from selfies was Rebecca Flanagan - where did you go???

The Thank Yous.

Raffle Ticket sellers; Pam’s sister, Claire, Steph Barclay and Phil Miesle. You worked hard and made it count!

Brian Corrigan, fellow D-Tribe member and Thriveabetes organiser for donating his "sound" & light services.

Another member of the diabetes community, Ben Kelly for his talented MC services.

The local businesses in Naas who sponsored fantastic raffle prizes;

• Conway Photography,
• BM Stairlifts Ltd,
• Donegans On Main Street Naas,
• Jam Music Company,
• David Murphy Naas Pharmacy,
• Barker and Jones, Naas,
• Meadows and Byrne,
• Turnstyle Charity Shop Naas,
• Formal Wear Naas,
• Ben Kelly Photography
• Duck & Cup Café
• Mary Power-Cooney theatrics

And pre booked ticket prize from jewellers, Macintyres of Edinburgh

Our musical artists who donated themselves;

• Hallymusic,
• The Cahill Family,
• Pete Kavanagh Music
• and Luka Bloom.

They were all outstanding and I encourage you to listen.

• The Moat Theatre and all the volunteers involved in running it. We know what that's like.
• Celine Garvey from KildareFM’s ArtyFacts
• Aisling Conway photographer from Kildare Now Newspaper

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And most importantly The Kavanagh Family, who came up with the idea, ran with it and were put through the ringer all last week pushing the publicity for the concert. They raised a whopping €1,600 after costs.

Roll on Thriveabetes 2018 on Saturday 24th February in The Red Cow Hotel, Dublin. Speakers and the programmes are being finalised soon and Registration will open in October.

Watch this space!

Diabetes Offline Support is Important too

“Diabetes is so easy to manage these days.” “Sure he’ll grow out of it by the time he’s 18.” “Is he allowed to eat that??!" and "Oh yeah, my gran has that from eating too much sugar!"

Just some of the things people have said to me when talking about Cayden’s diagnosis for the first time. These statements used to drive me crazy in the early days of diagnosis. I know that people mean well and didn’t make these statements to hurt or offend, they’re just lucky enough to not have to know what type 1 diabetes really is. I was once one of those people.  My name is Pam Kavanagh.  My son Cayden was diagnosed with type 1 diabetes on 12th February, aged 7.  Myself and Cayden attended our first Thriveabetes event in October 2016 and I wanted to share what that experience was like for us and why we are now helping to raise much needed funds to ensure the 2018 conference goes ahead.

FIRST WEEK OF DIAGNOSIS

the kavanagh family

Anyone who has a child with Type 1 diabetes knows what those first days in hospital are like. That day, when you're told your child has diabetes. It’s a rollercoaster of emotion.  You’re in a bubble not quite taking in the enormity of it and what is involved in managing the condition.

Seeing your child take their first ever injection, that’s something I’ll never forget.  How can I do that to him every day?  Then you’re shown how to draw up insulin in a syringe and the best methods of injecting. Four is the floor, you eat X amount of carb for X amount of insulin, and so on… Yeah sure it didn’t sound too bad, pretty straight forward enough until BOOM! -  you’re sent home to start the journey on your own and you very quickly realise what managing diabetes entails and that life would never be the same again.

Guilt set in when I looked back at pictures in the weeks leading up to his diagnosis, why didn’t I realise the seriousness of it sooner.  It felt to me like I was taking home a newborn baby for the very first time only without the joy and excitement.

SUPPORT – WHO TO TURN TO

Previously, in times of trouble or strife, the first people I would turn to were my family and close friends but this time it was different. They couldn’t help in a lot of areas as they didn’t understand.  My husband and I felt lost and alone.

I spent hours on Google everyday looking up information, advice, complications, cures, gadgets, technology and each night I grew more fearful and wished I could take his diabetes from him.  Dr Google turned into Dr Fear. I bought every book there was and watched tons of videos.  Information overload.  This created another struggle as there was so much conflicting information out there regarding optimal blood sugar levels, what he should or should not be eating, what we needed to do to avoid long term complications and so on.

Some of what I read also contradicted what we were taught in the hospital too so I felt at a complete loss, who should I listen to.  I knew I had to connect with other parents living in Ireland dealing with the same struggles as us.

FINDING THE DIABETES ONLINE COMMUNITY & THRIVEABETES

A few weeks after diagnosis, I was getting my own bloods done in a hospital and got chatting to the nurse and her daughter had diabetes.  She recommended I join a closed Facebook group called Parents of children & teens with Type 1 Diabetes. It was in this group that I saw a post about Thriveabetes, a one day conference in Ireland for adults, children & families living with Type 1.  I got in touch with them straight away looking for more information and received a really lovely email from Grainne, one of the co-founders.

MY THRIVEABETES CONFERENCE EXPERIENCE

Thriveabetes 2016 took place at Kilashee Hotel, Naas, Co. Kildare. There was such a great atmosphere in the venue and it was lovely meeting with people I’d chatted to online.  It's hard to describe what it felt like being surrounded by other people who were living with Type 1. In simple terms, the conference felt like a great big bear hug. I was in a room with people that had my back.  I could express my fears and anxieties without fear of being judged or freaking anyone out.

The workshops were split into different groups; Adults with type 1 diabetes were in one room, parents/grandparents of children with Type 1 in another and then three rooms for the children, divided up by age.

The speakers were amazing, in particular Joe Solowiejczyk (or Joe Solo as he's more commonly known) and Gary Scheiner.  Both certified diabetes educators living with type 1 diabetes. Gary has had type 1 for more than 30 years and Joe 50 years.  To see someone standing before your very eyes living well with diabetes for that long made me take a deep breath and smile, I honestly didn’t believe it was possible.  They shared some really great tips for managing diabetes on both a physical and phycological level.

Thriveabetes Conference for Type 1 Diabetes in Ireland

MY SON’S THRIVEABETES CONFERENCE EXPERIENCE

Cayden Making Friends at Thriveabetes

The children were divided into three groups based on their age. There were great activities put on for the kids including puppet making and circus skills workshops and a disco. Each of the children's rooms had volunteers who were experienced in checking blood sugars and dealing with hypos so I had no worries leaving him while I attended the workshops. He made friends for life. The kids also had a group session with Joe Solo. He made a great impression on Cayden. He still asks “When can we go to Thriveabetes again?”

Here's Cayden's experience in his own words :)

Joe Solo at Thriveabetes Ireland 2016

WHAT I GAINED FROM THE EVENT

Hope, courage, positivity, knowledge and a great sense of community. It was the first time since diagnosis where I felt that fear wasn’t ruling me, that things were actually going to be ok.

I learned far more in that one day than I had from months of reading stuff online. The Diabetes online community is like a lifeline but nothing can compare to being together in person and I think we are very lucky to have an event like this in Ireland.  It’s also great for the kids to see other children living with the condition too.

WHY MY FAMILY ARE RAISING FUNDS FOR THRIVEABETES

It's simple: we want to ensure that the next Thriveabetes conference goes ahead.  Thriveabetes is organised by a group of dedicated volunteers living with type 1 diabetes.  Organising an event of such a scale like this is no easy task and I admire the time and effort the team of volunteers put in. I try to help out when I can. The cost of running the event is quite significant.  Ticket sales alone are not enough. Fundraising is crucial to ensure the conference continues and to keep ticket prices reasonable.

FUNDRAISING MUSIC EVENT

My husband, Pete has organised a Fundraising Music Event which will take place on Saturday 12th August in the Moat Theatre, Naas, Co. Kildare. Tickets are €15 and available in advance from The Moat Theatre at this link.  We’re hoping to raise all of the funds required on the night and I would be extremely grateful if you could share the event with everyone you know. If you want to support this event but are unable to attend, you can also make a donation directly to Thriveabetes here.

Musical guests will include; Pete Kavanagh, The Cahill Sisters, Hally and special guest, Luka Bloom.  There will also be a raffle on the night with some great prizes (Currently accepting raffle prize donations; please get in touch if you are interested in helping out).

We asked Luka Bloom to perform at this event because his music has played a special role in our journey so far. We went to see him perform live two weeks before Cayden was diagnosed and he signed a CD to Cayden and our daughter Lilibeth.  Cayden was delighted with this and loves the album.  It was the album that we had on the cd player in the car on the surreal journey home from the hospital, not really knowing what was ahead for us.

It’s become one of Cayden’s favourite albums and one he asks us to play a lot so we chanced our arm and asked him if he would perform.  We were super excited when he kindly agreed.

Cayden saw him perform live for the first time a few weeks ago and he was over the moon when he dedicated a song to him :)

I would be super grateful if you could take a moment to find out more about the fundraiser and share it with your family and friends. It would mean an awful lot. Click here to get tickets.

Thank you so much for taking the time to read this and if you've not been to a Thriveabetes Conference before, I hope it has helped give you a feel as to what to expect at the next conference.