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Newly diagnosed autistic child

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J

juliag

New Member
Relationship to Diabetes
Parent of person with diabetes
Hi,
I am extremely stressed self employed mum of two. My son who is 4, has just been diagnosed with type 1 diabetes. He is also autistic, high functioning, and attends a specialist school. Has anyone else had the double whammy we have had???!! We are finding it very hard to cope, we dont have much help anyway apart from me and my husband, as our parents are too old to cope! Any advice please. Julia xx
 
Hi Julia

that does sound incredibily difficult....a few of us belong to CWD UK and there are a few families on there that have a child with T1 and austism or aspergers. Can i post on your mail to the other forum and maybe they might be able to help?
 
Hi Juliag,

A warm welcome to the forum, this is a very supportive place and I hope you find it useful. I am sorry to hear that your son has just been diagnosed type 1 on top of all you must deal with already. I can only imagine the stress you describe must be overwhelming right now. Are you receiving good care from your team and support?

There are lots of very nice parents of children with diabetes on this forum, as Becca has already mentioned I know they use other forums too more specific to children with diabetes. I dont doubt if they know someone in a similar circumstance to you they can help you make that contact.

I am sorry I cannot personally help, but please also know that those of us like me who arent knowledgeable about your own unique circumstance are always about and willing to listen anytime you need to let of steam and have a good old rant about your stresses with this new disease etc regardless.

Again, a warm welcome.
Louisa x
 
Hello and welcome to the forum - sorry you have to be here. There are loads of parents on here who may be able to help. Like Becca said there is another forum we use for just children and i know there are a few who have children with both conditions. If you have specific questions about diabetes post it on the 'general chat' section as you will get more replies. My son is 11 and diagnosed 10 months ago and is now on a pump - so i do know how desperate you will be feeling - but i absolutely promise you that things do get calmer and you will be able to cope with it all.🙂Bev x
 
Hi Julia
Welcome to the forum. I'm guessing that your son with autism & diabetes likes routine and rules? As he attends a special school, I would hope there is someone there who can check his blood glucose levels before midday meal and games lessons? Although most children and their parents find the multi dose insulin (MDI) or an insulin pump more flexible, your son might prefer the regularity of a bimodal insulin regime - 2 injections per day, each containing 2 peaks of insulin, 1 short acting, the other longer acting, so morning injection covers breakfast & midday meal, evening dose covers evening meal and bedtime snack.
One other thought - if he already gets DLA (Disability Living Allowance) then it may be worth asking for a supersession to get the level increased, and if he's not alreayd getting it, then worth applying. In any case, worth looking at Diabetes UK and National Autism Society websites for guidance in filling application forms, if possible get help by phone or in person.
 
Thanks so much for your messages of support.
Becca said:
Hi Julia

that does sound incredibily difficult....a few of us belong to CWD UK and there are a few families on there that have a child with T1 and austism or aspergers. Can i post on your mail to the other forum and maybe they might be able to help?
Click to expand...

I have just had a look at CWD UK and it would be great if you could post my msg on there too. I dont have a lot of time to spend on the computor so will keep checking back when i can!
Alex is on the carb counting plan so this has been quite complicated for us, but to be honest because of the autism he likes routines etc and will actively tell us when it is time to test and time to inject, and thats only after a month, so hopefully we will work it all out.
I know you have all been through this but it is so overwhelming the amount of stuff you have to do! Thanks again, Julia x
 
Hi Julia, just wanted to welcome you to the forum and add my good wishes, hoping things will settle soon into a routine that you can all cope with. There is so much to take in at first, but it does start to make sense - honest!🙂
 
Hi Julia

I have about 4 messages so far from CWD 🙂 I will PM you them. Thy have email addresses on and you are more than welcome to email the people back. If there is anyone else wanting info i can PM it to you as well 🙂
 
Hi, Can't help you with personal experiences but there's lots of parents on here who are managing life (more or less) and get my admiration - it's bad enough managing me !

Ask for any advice and you're sure to get it on here and there's lots of emotional support too.

All I can do is send best wishes and hugs. Good luck,
 
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