Arlo was set to start Beavers the week he was diagnosed. We put it off until we felt he was ready. Chris and I were never going to be ready but for Arlo to have as normal life as possible we had to get on with it.
So four weeks after diagnosis we decided to get back into normality and take Arlo to his first Beavers session. I emailed the leader to let them know we would be coming the following Monday and that I would be staying.
Beavers day came, Arlo was so excited about starting. Some of his buddies from school would there, this was a big deal and a massive step forward for us.
We arrived and saw everyone running around settling in. Pre – diabetes it would have been at this point that I would have pointed Arlo In the direction of his school mates, given him a kiss, said see you later and watch him as he happily wondered off with his buddies.
This time it was completely different. We didn’t leave each other sides and clung onto to each other’s hands. I walked us towards the Leader and introduced ourselves. I wasn’t expecting a fanfare but I was expecting some reassurance and some kind of signal that the responsible adults looking after my son were interested in his condition and realised how serious it was. The first conversation went a bit like this :
Me : “Hi hello this is Arlo and I’m his mum, I spoke to you about Arlo and emailed to say I would be staying”
Leader : ” oh really ! Why would you be staying, we encourage the beavers to be independent here and you being here doesn’t fit in with that.”
Me : ” Arlo has just been diagnosed with type 1 diabetes I need to be here.”
Leader :” So do you do the same at school and go to school with him every day ?”
Me : ” No the teachers have all had training sessions until they are competent in managing his diabetes.”
Leader : ” Well I’m not sure we can accommodate this you will have to speak to the Beaver/Scout commissioner who just so happens to be coming along later , you can stay until then.”
I’m not going to lie at this point I wanted to scream at her “fuck you and your Beavers we are out of here !!” I looked at Arlo who fortunately had gone over to sit with his buddies I took a deep breathe and calmly sat down it was only for an hour I told myself.
My actions and how I reacted would have a massive affect on Arlo and how he dealt with his diabetes in the future. If he saw me get angry every time someone was rude or discriminative he would then think it would be ok for him to do same.
As I sat there desperately trying not to cry I noticed that they were going to be cooking. My palms started getting sweaty and I could feel my heart fluttering in a panicked way. I had not anticipated cooking and eating food.
Me to leader : “Are you cooking?”
Leader : ” Yes we are baking bread- is that a problem ?”
Me : ” It is if you don’t inform me ! Will they be eating the bread ?”
Leader ( sighing at me now !) ” Yes but we we won’t give Arlo his to eat.”
Me (Trying not to lose my temper ): ” No Arlo will do whatever everyone else is doing – he will not be left out and his bread will not be put to one side you need to let me know and I will ensure he has insulin to cover the bread.”
By now the conversations between us were becoming quite strained.
It will be ok once the commissioner arrived I told myself. How wrong was I ! The commissioner was worse than the leader making me feel even worse than I already did. The conversation was all a bit of a blur but I recall hearing statements such as:
” Oh my husband is a diabetic and he is fine.”
“To have you here involves a lot of paperwork for me to complete, you know it’s a lot of work and you would have to come in for an interview and complete lots of paperwork its time consuming. If we can’t work something out then we may have to consider weather this is suitable for Arlo!”
It was at this point that I started to lose my calmness and reminded the commissioner that this was discrimination of the highest level and my son is entitled to come here like everyone else !
It all went a bit weird after this , the conversation ended and we went our separate ways . Me wanting to never come back again but knowing I had to hang on for Arlo.
The last straw for me was when the leader grabbed my arm and said
” Its ok I used to be a teacher and I’ve done first aid.”
I replied with “Oh have you looked after children with type 1 diabetes? ”
“No I’ve not come across anyone with diabetes.”
At this point I decided that was it we were never coming back. I was horrified at the lack of understanding, the lack of empathy and the total lack of reassurance. I was surprised that a huge organisation such as Beavers and Scouts didn’t have processes in place in managing chronic / long term health needs in children. We cant have been the first child to come to Beavers with health needs.
When I got home I burst into tears and vowed to not let this beat us. Arlo loved it and he wanted to go back so I penned a long detailed email citing that our conversations may have been misunderstood and that myself and Mrs L would be willing to deliver some training much like the school at a convinient time for both the leaders before the next session. I never received a reply from my email. One week later we all received an email from the leader. I expected a reply to my email would be coming my way as the next session was a day away. I waited 24 hrs and received nothing. I then sent a second email stating that Arlo would no longer be attending Beavers and that this was not going to work out. Within the hour I received a reply!
” Thankyou for your email and letting us know, that’s a shame. All the best.”
I was so angry I was raging , it makes me angry writing this and reminding myself of this time. I couldn’t believe it how dare they !
I should have taken it further and now I wished I had but at the time I wanted to forget about it all and so we did.
Penny came to the rescue giving me details of Beavers club in a village near us that she was familiar with. It could not have been more different.
A telephone conversation with the regional organiser followed by lots of email contact and a home visit by the Beaver leader . Reassured all the way that we would be working together. A request that when the beavers were doing cooking that we could be there to support them. It was such a different scenario and so much more positive.
Arlo has now been attending Beavers for the past month. He loves it, we love it. We don’t stay we do a blood glucose level the leader asks us what it is and how Arlo is. If all ok we leave Arlo to enjoy Beavers just like everyone else there. Just like it should be.