Hi Lorna, and welcome to the forum.
While I don't have a child with diabetes, I do have a disabled child and I used to run my local parent carer participation forum, so I feel moved to post a response.
Regardless of what your child's diagnosis is, there is a well-documented grieving response to being told anything is "wrong" with your child. Unfortunately, this type of grief falls right in between various services - you're experiencing a profound sense of loss and yet your child is alive so you can't approach people like Cruse, but approaching other more generalised mental health and counselling services (like Womankind, for example), means you won't be seen by people with much experience of this particular kind of loss.
Firstly - and this is important - take a break and just breathe. Right now. Don't read to the end of this post, don't put it off. Close your eyes, breathe deeply and slowly. Everything
is going to be okay. Though it feels like it, you're far from alone and there is plenty of support available if you know where to start looking.
The next thing to understand is that you are now - legally - a parent carer. And this is important to know because it unlocks a whole slew of statutory processes and support that you wouldn't otherwise have had access to. But, also, it's a label that is difficult - and often heartbreaking - to wear.
I won't info-dump too much on you here, but I DO want to emphasis that you need to take care of yourself as a priority. Don't put off eating because you're busy. Don't compromise on sleep or doctor's appointments or exercise. Don't cancel opportunities to meet up with friends. Do feel able to cry, be angry, get emotional (I bought a brand new, super-cheap dinner set and broke every single item in my garden while screaming profanities at the heavens. INCREDIBLY satisfying). If you are unable to function as a person, you are unable to function as a carer.
There are two main organisations I'll signpost you to for now:
1. Your local parent carer forum.
Your profile doesn't give your location, so I've can't look up which forum you'll fall under, but there's one in every single local authority area in the country. They are primarily run by parent carers of children with a huge variety of disabilities and diagnosis, and they are (mostly) all volunteers, which means they're passionate about being there and offering support - not obliged.
They will be expert in signposting you to relevant local services, they will understand service pathways, they will be able to log your experiences and concerns and find someone to answer any questions you might have about specific statutory services and processes. But they will also know what 3rd Sector (charity and voluntary) organisations are active in your area and how to contact them and will probably run some kind of parent support network, regular support group, training and well-being sessions and other stuff that will have an immediate and positive impact on you and your family.
More importantly for you in the immediate term, they will instinctively understand how you're feeling. Your friends don't - that's why they've drifted. It's too difficult for people who care about us to contemplate the reality of having a child with any kind of diagnosis: they see the impact it's having on you and they don't know what to say: empathy is a curse as well as a blessing.
To find your local forum, visit this link, find your locality and drop them a line:
http://www.nnpcf.org.uk/who-we-are/find-your-local-forum/
2. Contact-a-Family
CaF is an epic and amazing charity that works to support and educate parent carers when it comes to their rights, entitlements and responsibilities. They were behind the overturning of the Bedroom Tax for overnight carers of disabled children and they regularly lobby the government on behalf of parent carers.
I would urge you to contact them and have a chat with them about things like:
- Social care and why it's useful (respite, direct payments, short breaks, sibling support, carers' assessments)
- Benefits and your entitlements (Child DLA, Carers' Allowance, Child Tax Credits)
- Finances, your employment rights as a carer, LEA childcare responsibilities
- Support in your area (Whether there's a CaF worker locally to you, if there's a Carers' Support Centre, what a "Local Offer" is)
- How to get networked with other parents in the same situation as you
A lot of this information is available from their website but, honestly, I think you're in a place where you need to talk and feel you've been heard which is so much more a positive experience than spending hours mindlessly researching webpage after webpage.
Their website is:
https://www.cafamily.org.uk
Their freephone helpline is: 0808 8083555
You're going to be fine. In my experience (12 years as a parent carer, 5 years in my PC forum) I've never seen a family fail. Sometimes the journey is rocky but the best most powerful thing you can do to come to terms with the bomb that's just been dropped is to get informed and get networked.
Much love,
Sock x
