Additional Needs

Why You MUST Accept Help - Raising Children with Disabilities

Posted by Ceri-Ann Brown on 22nd September 2015 Additional Needs, Disabilities

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For all of my flaws I think one of my most troublesome is pride.

Much as I want everyone to think I can cope and that I am super-mum, I also want people to see that yes this is hard but not viewing me as a victim.

There is no balance – I want to be hailed as amazing for what I do, but I want to be empathised with (NOT pitied!!) but you know what?

I also want to be just like everyone else – I don’t always want our situation to stand out as different.

You can’t win.

So there you go.

Aspire to be like me, wish you weren’t me, and see me as you!

You see the last thing I want is anyone at all to view my caring for Amy as a burden.

I am absolutely honoured and privileged that I get to play such a huge part in my little girl’s life.

Sadly for many families like ours – a lot of our time together is robbed from us by appointments, therapies, prescriptions, phone calls, admin, tube feeding commitments etc.

We often spread ourselves so thinly that we operate on permanent burn-out mode.

This week I did a big thing.

A few months ago our team of specialists helped us get respite.

We were awarded 5 hours at a local respite centre.

It is a truly amazing place, it has a wheelchair swing, adapted equipment everywhere, themed bedrooms, a gorgeous sensory room – everything.

I would have us all move in there in an instant if I could, it’s perfect, as are the staff.

When I pick Amy up she is always in such a lovely mood – she seems genuinely delighted to see me, and me her!

I know she is in great hands there and I get very excited to see her because whilst I need that time – I also miss her sorely when she isn’t there.

We have been having respite for a couple of months now.

But this week I realised – 5 hours is simply not enough.

When respite was first mentioned it was met by feelings of horror that they thought I couldn’t cope.

But after careful consideration I realised that this would be best for all of us.

I then imagined coffees with friends, reading books, all those sorts of things – things I used to do – things I know other people still do, things I grieve and used to take for granted.

But the reality is that an hour of that time is taken up driving to and from the respite centre and the rest was collecting prescriptions, drawing up meds, changing bedding and all sorts of unpleasant but highly necessary tasks.

So the big thing I did?

I asked for help!

I explained how I wasn’t coping and how constantly rushed I was.

I explained my bad back, I explained that genuinely my personal hygiene and mental health was suffering as a result of the amount of responsibilities I now have.

So now next week we will have a couple more hours and they are going to review our current services and hopefully provide some extra support.

You know what else I realised this week?

When Amy is in respite she has a whole team of people dedicated to her well-being.

Not just me.

I am that team!

I am that person pressing buttons on toys because she can’t, I’m the one singing, I’m the one administering meds, I am the one doing nappy changes, physio, speech and language therapy, dealing with tantrums, cuddling etc.

Not only am I not a whole team of people, there is so much cool stuff there – there are bubble tubes, laser lights, projectors, other children, more toys than you can imagine!

When offered to be child-free for an hour or two inside I’m screaming “Oh, yes please!” and I’m internally planning about 100 activities I would love to do (firstly sleep. Always sleep. Then a bath, then of course all the tv shows I have missed over 18 months, eating snacks, reading books, writing blogs, texting friends, sitting in the garden etc).

But what comes out?

Usually: "No thanks, don’t worry, I’d rather us all hang out together."

I worry that I am becoming a nuisance, or I worry that I am betraying my child by needing that time away.

Well recently I have managed to muster up: “Are you sure? That would be great,” followed closely by a huge wave of thoughts about how selfish I am and what a horrible mother I have become.

I try to banish these thoughts as part of my recent interest in mindfulness.

I am trying to learn that in order to care for Amy and be the mum I need to be that I need to look after myself.

I know that I cannot operate on burn-out mode and I have seen a really pathetic, downbeat, defeatist version of myself recently that I would really like to see the back of.

For me recently the overnight tube feeds have started to take their toll.

You know how people get a sign for their house like “rose cottage” or “sunshine terrace”?

Well, here we are, eyebag central.

We are tube-town nook, backache boulevard; you get the picture.

My parents and Phil’s mum see my exhaustion more than most others.

They know how when Amy goes to bed we are too tired to enjoy hobbies.

They know I plough on 110% mode with my necessary chores, feeling tremendous guilt that Amy is not getting the fun, relaxed, playful mummy she deserves.

So now, I will accept those offers.

I realise now – it is helping Amy socialise with others, will allow her new experiences, will help her learn some independence and when she comes home to me I will have the energy needed to be who I want to be – for her, for me, and for Phil.

So, the moral of the story?

I want to be you, I don’t want to be you, I am just like you.

If you need help – ask for it.

If you are offered help – take it.

Look after yourself.

Not looking after yourself will have a knock-on effect on everyone important to you.

Your mental health could suffer; your loved ones will suffer.

Life is far too short to run on empty.

I have not yet had my few hours extra respite, but knowing they're there helps me plan my week, feel positive about the future, and helps me set achievable goals for that time.

I know I will get chores done – but I will also get to be me for a while too.