Receiving Dla For My Son Who Has Type 1 Diabetes.

[Jenarry]

My son who is nearly 7 years old and was diagnosed as T1 diabetic aged 3years old.It was a total shock when he was first diagnosed and there was lots I had to learn and do straight away such as giving my little son a minimum of 4 injections a day ,working out what dose he needed and doing regular blood glucose testing. My son now has an insulin pump which has been terrific and helps to make life a little bit more normal. my son is not old enough yet to look after things himself ,will be 2 or 3 years yet.
My question is about Having DLA for him. during the first week of my son being diagnosed and we were home from hospital in one visit from the paediatric diabetes nurse she told my about ringing up to claim DLA. she said their was no shame in claiming it and my son was perfectly entitled to it and she even gave me a preprinted help sheet of how certain questions should be answered.without her kind advice I wouldn't even had known about it. and so we were awarded DLA after completing and sending the huge form off.
I know that our lifestyle has changed and things aren't easy(on a day to day basis and night times too(i've been up most of the night just recently when matthew was suffering a high blood sugar) and I feel that receiving DLA ,i can heat the house a little bit more to keep matthew comfortable, I can afford more gluten free food for matthew as he is also a coeliac ,i can afford to have time off work to go to his regular diabetic appointments.
I did in fact receive a couple of comments from two different people who were saying in a round about way that matthew is my son and his health problem is my problem and it is madness that i receive this money off the government for something that is my responsibility, I thought this was quite hurtful and I wished they could change places with me for 1 day to get a full picture. what do you guys think?...

[Jenarry]

and thanks atalanta. that is reassuring to hear . The more I learn about t1 diabetes the more worried I get. The diabetic nurses and consultant we see are all excellent but they do play things down when you ask for information and then in every day life you hear about things like 'dead in bed' syndrome. I heard of this whilst watching a non health related programme like diy sos and it's about the worst thing i've heard of since being told my son is diabetic. :O( I do worry about these things a lot . :O(

[DaisyNonna]

Jenarry, your son's condition is not your fault or his fault.Please accet whatever help is available without feeling guilty. Help is there, take it and ignore any negative, hurtful comments. May your family prosper.

[woofgang]

Jemisa, a child is entitled to the care component because they are not able to manage the blood tests and injections themselves.
http://www.diabetes.org.uk/Guide-to-diabetes/Living_with_diabetes/Financial_entitlements/Disability_Living_Allowance/
Jenarry, I think you would be quite within your rights to say to people who are so nosey that its not something that you will discuss. After I lost my DH I got quite a shock about how intrusive some "friends" could be. In the end I used to say "sorry I can't discuss that." and change the subject.

[bednobs]

jem, it's different for children - 5 year old cannot be expected to manage their disease and injections themselves, so need someone to do it. Therefore they are entitkled to the care componemt of DLA

[nungate]

Listen Jenarry, your son is entitled to this benefit. My daughter (Queenofmean who also posts on AB ) received it well into her teens. A child with type 1 is hard work (queenie was 2 years at diagnosis), back then it was even harder. I had to mix her insulin in the syringe, there were no pens or pumps, and it was difficult to get sugar free foods, but that got better over the years. I can't begin to imagine how difficult it is for you to have to cope with your son being coeliac as well (I understand it often goes hand in hand with diabetes) It will take him some time to even begin to recognise the signs of a hypo, I could always tell be her moods and pallor he needs you to help him until he is able to do this for himself. It is not an easy disease to live with but you will manage, I've done it for nearly 23 years and I still have to be on hand to help occasionally. As for these people and their comments, just tell them that until they have walked a mile in your shoes to go and take a stuff at themselves! Any time you feel the need to ask advice or just want to unload I'll be here on AB. I've been there, and so has Queenie she can give you an idea of what your son might be going through, so please feel free to ask.

[Jenarry]

ah that's kind words daisynonna . thankyou.
and I think I will do that in future woofgang regardless of who is asking as these two people are really not people I would've expected a negative response from.
I have unfortunately seen them in a different light now particularly my friend.
I'm sure if either of them was a parent they would have a more supportive view.

[Jenarry]

and thanks nungate . that is very nice of you.
it is hard work isn't it. my matthew has a insulin pump which is fantastic but occasionally there is a problem with the insulin getting into my son's system and the first you know is when he presents symptoms because his blood sugar is 20+ or because you just happen to be testing and then you have hours of treating and waiting for it to come down.it happened this wed am. tested blood sugar at 7am on waking and blood sugar was 23. :O(

[Iluvspikey]

Let them walk a mile in your shoes, and then comment. They don't realise that even something simple like food shopping can take three times as long because you have to read labels. Normal everyday foods children like such as sausages, fish fingers or chicken nuggets are a no-go area for you because of the gluten in the breadcrumbs and cereal. Have peace of mind that you are doing the best for your son, and as long a you know that - let anybody with negative comments take a running jump!

[Jenarry]

Thankyou I luvspikey and everyone else for kind words and advice.I will feel less guilty about this and put it down to 'they know not of what they speak'

[mrs.chappie]

Don't give them a second thought, Jenarry. None of their business. You (or he) gets it legitimately and that's all that matters.

[gness]

Jen....I'd like to hear you say you won't feel guilty at all...not less guilty. You have nothing to feel anywhere near guilty about. Like Spikey says... let them walk a mile in your shoes........take care. Gx

[nungate]

I've wondered how you and your lad were getting on, glad to hear you've decided not to let the turkeys get you down. You've enough on your plate without worrying about people having a go for claiming a benefit to which your son is entitled. You go girl!