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Work and type1 diabetic child

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L

Lynna

Active Member
Relationship to Diabetes
Parent of person with diabetes
How do parents of kids with type 1 hold Down a job?

I am lucky as I work part time and it is very flexible, so if I have to go in late because morning levels are a bit high, or not at all if ketones are present, I can. I either make the time up or take it unpaid. But if I was a nurse/doctor/teacher or any number of other professions I wouldn't be able to do that.

Probably because it is a new year, I am thinking of what else I could do, but I don't see what I could commit to and be 'available' to my daughter when needed.

Would be interested in any ones thoughts on how to juggle kids with type 1 and a job.
 
Hi Lynna
I agree it's really hard if you have a child with T1 and you're trying to hold down a job at the same time. My son didn't develop T1 until he was 13, but he was born with another long term condition (lymphoedema) which made it difficult for me to carry on working. When he was 3 and my second child came along I took the plunge and set up a freelance business, but it would have been very difficult to do that if my husband hadn't had a steady job. I have been so grateful for the flexibility that working for myself has given me, particularly around the time of diagnosis because William was very poorly and had half a term off school. I guess I'm lucky that the area I was in (copywriting) worked quite nicely as a freelance job and I've been doing it ever since. Things have been much steadier for William recently and I'm doing a long contract right now, full time until the end of April which I couldn't have managed before. It's much harder when they're younger and you need to keep on top of their condition yourself.
Best wishes
Catherien
 
Hi, I am so lucky with my work place, even though I work part time, 3 days a week, I often have to leave at the drop of a hat to see to harry. For instance the other day, I had just pulled into the car park and school rang, he had a blockage on his pump and I had to go and change the lot.

I also have had to leave work today at lunch time as we are still going into school at lunchtime to give him his insulin as the school are still not confident in using the pump. I also had to have a week off in december when Harry was ill an dended up in hospital.

Although I was willing to take the time off unpaid, my boss said I could make the time up within this year.

I am lucky, and it helps that I am the HR manager for the company, though when Im a bit stressed I have no one to rant to at work !!

Its very hard to have to come into work when I have been up in the night, either correcting or giving biscuits but I plod on.

Would be great to hear other peoples circumstances regarding work. I would like to think that companies are sympathetic to people with children with type 1 , as I am in HR , I always offer sympathy and assistance where I can in my workplace.

Helen
 
Hi, interesting thread. I would love to be able to work but find it impossible in my circumstances. My son was 4 at diagnosis, and the original plan had been that I would return to part time work when he started full time school. However, since his school would not do so much as a fingerprick test, let alone an injection, I had to go into school daily and look after his diabetes. I did take a job as a midday supervisor at his school for a while. As the years have gone by, I've lost count of the number of emergency calls into school, the school trips I've had to go on (individual days and three residentials), in addition to the usual hospital appointments. There have been many many meetings in school about problems with diabetes care, training sessions, planning for school trips, sporting events, and many other things. There are also phone calls where I can resolve things over the phone without having to go in, but obviously these take time too. I can't see an employer being too impressed with all the time I have to spend on being a carer! My husband walked out on us nearly three years ago now, and though he never really did much of the diabetes care, it has meant that all the night testing etc. falls to me, whether I am ill or exhausted it still has to be done (I have no family nearby). So I am permanently shattered, and there is no way I could hold down a job. Being a single parent with no family near also causes issues around school holidays, ie. if I worked there would be nobody to look after my son. Sorry to sound negative! I think being able to work depends on having a supportive partner/family and an understanding employer. But I would be happier in myself, as well as financially better off, if I could work. I do some voluntary work and am a school governor at one of the local schools, just to keep my brain active and for the social side of not being stuck at home. I worry that my son is growing up with out a working role model in the home, as well as missing out on some of the things that his more affluent friends have. But if he is loved and kept healthy, that's more important. 🙂
 
Oh Redkite...:( ...all of you. You're all amazing. 😱
 
Redkite, I think you are great coping alone with your sons diabetes ; and your son is lucky to have such a devoted mum and Im sure he realises that too. The help and advice you have given me over the past year has been so helpful.

Helen
 
I am currently on unpaid leave from my 3 day (22.5hr) week. I began this in Sept to settle my daughter into school. The original plan was to return in February but there is no way I can do this, at the moment I get several phonecalls from school and visit for troubleshooting when something is a-miss. Today I was called 3 times before going in to collect her at lunch-time, her numbers are high and she has another cough. There is also the lack of sleep and effect that has on my work.
Unfortunately, although I work in the community and I am out and about in my car visiting people in their homes, it would be unprofessional to keep my phone on ring or need to suddenly leave a patient mid-way through a scheduled visit, some of my work can be crisis care where I couldn't leave. It is very stressful wondering whether you are going to be needed at school and checking your phone and wondering if the low that morning was a one off or if she is struggling.
My husband is in the same boat work-wise as we do much the same occupation, luckily he supports my time off as I am the one who does all the managing of my dd's care.
My boss lacks empathy and it is made difficult to approach her if I need to be away so I have great reservations about returning. Presently I have extended my leave until April but this was not without a fight. I am stressed thinking about having to go back and wonder if there is any other job I could do with less responsibility. :/
 
Thanks Bloden and hkk1970 - it isn't easy, that's for sure 🙂

Hanmillmum, I agree it's even harder when you can't easily answer your phone. I feel under pressure to be contactable at all times (in fact there have been times in the past when I've had a very tearful son on the phone when he's been kept waiting dialling and redialling while I've been driving and unable to pick up). I daren't go more than half an hour from home/school, since there's nobody else but me to help. This also means constraints on the type of volunteering I can do - I did consider helping giving lifts to local elderly people and visiting for a cuppa and chat (would love to do this), but I can't risk needing to drop everything and dash up to school, as I couldn't just leave someone in the lurch like that! I also considered helping on a local nature reserve, but the phone signal is minimal and I can't risk that.

Hope you can work something out with your employer.....
 
Redkite said:
Hanmillmum, I agree it's even harder when you can't easily answer your phone. I feel under pressure to be contactable at all times (in fact there have been times in the past when I've had a very tearful son on the phone when he's been kept waiting dialling and redialling while I've been driving and unable to pick up). I daren't go more than half an hour from home/school, since there's nobody else but me to help. This also means constraints on the type of volunteering I can do - I did consider helping giving lifts to local elderly people and visiting for a cuppa and chat (would love to do this), but I can't risk needing to drop everything and dash up to school, as I couldn't just leave someone in the lurch like that! I also considered helping on a local nature reserve, but the phone signal is minimal and I can't risk that.
Click to expand...

That's exactly right - I feel the same in case there is in particular an issue with the pump. Although my work is in the local vicinity, it covers 4 different areas/towns, one of which is a 40min drive in good traffic - that's once you can round things up and get away. You will be as stuck as I have felt if you do lifts and visiting with the elderly - such a shame as it's such rewarding work (my caseload has been over 65's) :(

Lets hope we both find some solutions that are workable in the near future x 🙂
 
Redkite said:
Thanks Bloden and hkk1970 - it isn't easy, that's for sure 🙂

Hanmillmum, I agree it's even harder when you can't easily answer your phone. I feel under pressure to be contactable at all times (in fact there have been times in the past when I've had a very tearful son on the phone when he's been kept waiting dialling and redialling while I've been driving and unable to pick up). I daren't go more than half an hour from home/school, since there's nobody else but me to help. This also means constraints on the type of volunteering I can do - I did consider helping giving lifts to local elderly people and visiting for a cuppa and chat (would love to do this), but I can't risk needing to drop everything and dash up to school, as I couldn't just leave someone in the lurch like that! I also considered helping on a local nature reserve, but the phone signal is minimal and I can't risk that.

Hope you can work something out with your employer.....
Click to expand...

I know this is just one small part of your challenge, Redkite, but I just wondered if the signal for all networks is equally bad in the local nature reserve? If you ask people about their signal and which network they use when there, you might find that one is OK. Admittedly, that might involve a change of number, but it might be a solution. When checking locations for adventure races, planners often carry a set of SIM cards so they can check the signal in each location where a marshal (like me) might be deployed, and the same principle might work in your reserve. Obviously, other race communication techniques, such as short wave radio sets wouldn't help, as that would require school etc to have sets on same wavelength, plus have good line of sight transmission.
 
Hi Copepod, thanks for that idea - I'll reply properly in the off the subject section so as not to hijack this thread!
 
The words 'grandmother' and 'eggs' may spring to mind, but did you know that carers of people with medical conditions have rights to reasonable adjustments under the Disability Discrimination Act? I'm by no means an expert, but it's worth doing some research or getting some advice from the CAB.
 
Oh my! I never thought this topic was such a hot potato! I was worried that my concerns about not being 'available' as much as I am was in some way an excuse not to find myself a 'better' job, but I see they are quite real.
I do have it quite easy in comparison to some in that I can be flexible with my working hours(but dont want to hack employer off too much), and I have my mother in law nearby who could usually look after my daughter if she is off school. But she would not be able to deal with the diabetes issues. But it is little things like this morning my daughter woke up a bit high with 0.5 ketones so we had to do an Unscheduled cannula change which meant she was a bit late for school and I was late for work.( I maybe shouldn't have sent her until I knew she had come down, but I hoped she would do the right thing and contact me from school if she needed (she is 11, but very shy)).
The pump makes it easier for her to manage things herself so there is no need for me to go to school unless in an emergency.
Redkite, I think you are right, being able to work is helped by having a supportive family and an understanding employer.
Hanmillmum, I hope you manage to get back to work or find something else more accommodating.
Thank you all for your replies. Its really interesting to hear others views.
I'm off to bed - no night testing tonight as far as I know!
 
Hi I am mum to newly diagnosed 6.5 year old only this week. I work 2 days a week (wed late shift and thu daytime) - and work is same distance from school and home! Its like a triangle of distance. When we got diagnosed and went into hospital, it meant missing work, I told them all about it and its been a big shock and they were sympathetic and told me not to worry about it. I haven't been in yet so don't know whether ill have to make the time up or not. Its half term so I haven't had to deal with school yet but I can imagine I am going to have to go in at lunchtime to inject him, luckily It will only mean one day a week coming out of work on my lunch and doing it. Having seen on here the amount of time you get called into school im now panicking!! I know school trips etc will have to be worked out but also our diabetic clinic Is in town 40 mins away and also on a Thursday.... my day at work.... Does anyone know much about how flexible work need to be to a carer of a child like this? Obv I wouldn't expect to get a day paid to go to the apt but id use holiday hours. I cant work a diff day in its place due to the work load.
 
oh just to add ive worked there 15 years and its a big organisation (tho have narrowly avoided redundancy twice) they do have a helpline number I might ring for help with personal issues such as this (marriage/divorce/death/debt/alcohol and such like)
 
Hi Jojo welcome and sorry you have to be here-I havnt a little one a teenager when dx at 15 -others with little ones will be along soon.OK on the work front can you apply for compassionate leave to cover the days you had off? and moving forward would your work let you go in say an hour earlier so you can cover the school injection?As for school what generally happens is your team go in[ hopefully] if not get them to from the start - and set up a care plan this needs to be on display and ALL staff made aware.If you post a question in the newbies those with younger children will see-welcome again
 
Welcome to the forum, Jojojojo2012, and sorry you have to be here.

Agree that initially a care plan produced in collaboration between you, your child's other parent, any other friends or relatives who provide care between school and you starting / finishing work (if relevant) AND your child's diabetes team AND school.

If you're in a union / professional body, then it's worth making them aware oif your child's diagnosis and asking for advice and / or guidance and perhaps a representative to come along to meetings with supervisor / HR. Depending on how you / your colleagues view the employer's helpline, then worth trying that.

There's a difference between your legal rights and what happens in practice with a given employer. If you need more time off work, then demanding rights isn't always as successful as negotiating from a platform of knowledge of whagt to ask for - that applies to employed adults with diabetes, as well as parents of children with diabetes.
 
Hi Jojojojo2012,

Welcome to the forum🙂The Equal Opportunities does have a section regarding carers - I think from memory it says something like a carer should not be penalised due to their caring role and mentions indirect discrimination (I think). Have a google and read for yourself - but hopefully your HR might be able to help as you cant miss clinic - although once things settle down its only every three months so maybe you could swop days with someone? Sort out the care plan before your son goes to School and make sure you are there at the meeting as sometimes teams or Schools try to do this between them which isnt right as you know your child best. Your team may be one of the good ones and involve you anyway which is what you need. Do you have a partner/family member who could help with injections at School so you could take turns?🙂Bev
 
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