Advice please

have an oddball idea that used to work when my autistic child became too perseverative, I would adopt the perseverative behavior and perseveratively do it. This would mean you would perseveratively do your blood sugars, talk about it at the same time, anxiously analyze each one against the previous. Test on some place beside the finger, maybe your thigh. Make a point of announcing quite normal things you are giving up because of the perseverance , ex. "Usually I listen to the news right now, but I am changing to taking lots of bloodsuger readings on my thigh." "I'm not reading the newspaper or my books anymore. TIme for testing!" Hardest part is mimicking reality instead of irony

 

Hi, I can imagine how you feel;(( We are pretty new in this as well (since April), but I can tell you what everybody's been telling me: time is needed for adjustment, for getting used to a new routine. How much time, nobody can tell, as we are all different... Maybe I would try to talk to him, to reassure him that "everything is going to be alright", that one "bad" reading will not do him any harm. They are just kids, scared and confused, worried, maybe strongeer reassurance is needed (even if we have to lie a little, there's no need for them to know the whole truth right now)... I am not sure myself, but maybe it can help.
Take care, all the best
Natasha

 

As I was diagnosed at a much younger age I probably avoided the anxiety that your son is experiencing. But one suggestion I can make. Are there Diabetes Camps for Children where you live? When I was 9 and 10 my parents registered me for a 2 week camp stay during the summer. I got to meet a lot of other kids with diabetes that were my own age. They had a health team on staff and it was just like a regular camp except all the kids had diabetes. Looking back on it now - my parents got a break from me and I got an education in between doing all those typical camp activities that everyone does. Hopefully that option is available to you.

 

Could your son get help/advice from a professional, wrt his dyspraxia? There must be exercises he could do to enable him to test at the first attempt. Is this what the psych referral is for? Surely it would help matters if he tested successfully first time.

Sorry, I hope I'm not stating the obvious.

 

Sorry to hear you are having such a difficult time. I feel your pain - my 11yo son was diagnosed in April and it is such a huge life adjustment. I totally understand the anxiety and checking, I'm sure I'd be the same. It does sound like professional help from someone very experienced in this area would be the best bet.

My son has gone on the pump, just last week, and really loves it. No needles and back to normal flexible eating. If your boy would consent to just trial it for a bit, if that was possible, he might find it so much easier. It also helps a lot to keep the BGs lower and more stable which is reassuring for them. He will start on the CGM soon but in the meantime has been using the Freestyle Libre so he doesn't have to do so many fingerpricks - that was actually the most intrusive thing.

Sending you luck and best wishes, it is not an easy thing and we all work so hard for our kids and do the best we can. xxxx

 

What a lot to adjust to. You say the school are finding it tricky and are worried about him falling behind. Is there any counselling/emotional support available there for him? Young people can need time and space out while they are adjusting and if this is supported with help to understand his anxiety, it need not be a lot of time. He is only 12, if his schoolwork falls behind for a bit it need not be the end of the world.

 

Anxiety and dyspraxia - I'm wondering, has your son had an OT assessment for other sensory processing issues? From what you're describing, I wonder if he's not experiencing a little sensory overload which is then magnifying his anxiety about intrusion (the needle thing) and control (the pump thing).

Have you tried calming things right down for about 15 minutes before he's due to test, maybe a cool, shady, quiet room to give him a chance to self-regulate a bit and let his senses realign. Aside from anything else, he'll probably just really enjoy the extra time with you, but it might also help him to have a bit of extra time and space (modern life allowing) to process what's happening and get it all straight in his mind.

Also, though they were designed for kids with autism, Social Stories are fab for explaining complicated things to kids using their own voices and can be comforting when it comes to things that make them anxious. More info here:

http://www.child-autism-parent-cafe.com/how-to-write-a-social-story.html

An example of a story you might write for your son could be:

I have diabetes.
To manage my diabetes, I must measure the sugar level in my blood.
To measure my level, I must use a machine. My dad (?) will help me to do that.
The machine will use a tiny needle to prick my finger. This hurts, but not for very long.
I do not like needle, but knowing my level will help my diabetes.
If I put the machine in the right place and close my eyes before pressing the button, it won't be so frightening.

(Seriously generalised!)

Also, don't rely on statutory services for mental health; CAMHS is notoriously dysfunctional and slow to respond due to an overwhelming caseload and not enough funding. I wonder whether either SCOPE or MenCap might be able to offer your son some help much faster:

https://www.scope.org.uk/support/disabled-people/young-disabled
https://www.mencap.org.uk/ (I suggest Mencap aware that you haven't specifically mentioned a learning disability, but they're worth contacting anyway as they're all about mental health support and might know of another org who can help)

Luck and love - and perseverance!

Sock x

 

Dear Sock,

I assume you mean well. But, it seems you do not have Diabetes since you do not know the difference between meter, machine and lancing device with lancet, from a machine with a needle attached to it. I wonder at your use of the word dyspraxia (unnecessary, use plain English to be less patronizing) and have a more than a few issues with your sample story. Life skills should not be made to be frightening, the goal is independence in testing and being able to function by oneself, growing in the understanding that Diabetes is a lifelong struggle where the person can have a pretty great and happy lifestyle by learning how to handle Diabetes in daily life with whatever combination of testing, diet, routines, exercise and medications work.

Your story idea is a time tested one but your sample does not meet reality.

An example of a story you might write for a child would include the name of the child and have the child narrate to explain to other children:

My name is Theodore. I have Diabetes and test myself several times a day to see my blood sugar levels.

I test with a meter and a test strip. I put the test strip in my meter.

I put a lancet in my lancing device, close it, cock it, push the button and get a tiny drop of my blood on my skin.

I move the test strip near the drop of blood and the meter records my blood sugar level.

I clean the blood off with an alcohol pad. I throw the test strip and the lancet away. I will use new ones next time I test.

This helps me figure out what to eat to stay healthy and do all the things I want to do.

Knowledge is power! This knowledge I will use the rest of my life.


__________________________________________________________________________________________________

 

Hi @Contralto

I do have diabetes, I was diagnosed 19th June so I'm still very new to it, the language and this community. I think that's already very clear from my signature and my profile stats.

I used the word "dyspraxia" because the OP used it in their opening post, so clearly it's something they're already familiar with. If anyone who isn't the OP isn't sure what it is, they can ask, google, whatever - I was addressing the OP in language they'd already used. I think substituting it for either a clumsy or technical description of dyspraxia would have been patronising when addressing someone who already has the term in regular use.

The "sample story" was a very generalised example of a very specific tool used to communicate with children and young people with autism, learning difficulties and anxiety disorders, and I thought I'd made it very clear that I was being very general in giving my example and had given a link to a resource where OP could learn more if they wanted.

Not acknowledging someone's fear is not the way to help them deal with it.

I appreciate everyone has different experiences, opinions and backgrounds, and that you're also coming from a place of support for the OP, but I don't feel I was talking out of my hat. While I'm new to diabetes, I'm not new to parenting an extremely anxious child, and it was this experience I was using in my post.

 

He is 12 and entering early puberty, which is a very trying time for adolescents. Emotion and peer group pressures at school are going to be a real trial. He will need your support in this trying period.