Additional Needs

Special Needs Parenting: When She’s Not There

Posted by Ceri-Ann Brown on 28th July 2017 Additional Needs, Disabilities

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If you're anything like me you'll be rushed off your feet the vast majority of the time.

Not just day to day stuff but special needs mum stuff i.e. ordering meds, making up tube feeds, cleaning syringes, ensuring you get her in her standing frame at least for 30 minutes, making phone calls, arranging for equipment to be adjusted, on errands to and from speech and language, orthotics and so on.

It really is never ending and even when you think you are up to date you realise - have we done tummy time this week?

Have we done any bench sitting?

You can fill your entire day trying to balance things you know you have to do, and also things that are fun and, "normal",  to do with your child such as feed ducks or visit the park.

So it's only natural to be desperate for, "me time". I'm not even really sure what that is.

As soon as Amy isn't with me I launch further in to my world of chores - the ones that are harder to do when she's there as she so often seeks one on one attention.

Really, "respite time",  should be used for self-care and relaxation but lately it has mainly been characterised by me either feeling guilty that she isn't with me and guilty that I am not out at a, "real", job.

So to compensate I keep burning myself out on dog walks, house cleaning, washing and so on.

By the time I go to pick her up I can barely move.

I am then consumed with rage at myself for wasting time I should have spent being relaxed enough to meet her care needs by doing chores that really don’t HAVE TO be done.

Sometimes as a carer you wonder how other people like us are managing to work full time. I am in awe of them.

Not a moment seems to go unaccounted for in my day and there is always so much left to do for the next day.

When she goes to respite I know she is surrounded by well trained, friendly, amazing people who are dedicated to meeting her needs and making sure she is happy.

I love the thought of it and I love hearing what she has been up to.

I don't want to need that time away, it still pains me and even a few years on feels slightly odd.

When she isn't with me a huge part of me is missing.

I find myself leaving the supermarket almost saying out loud, "Right then, let's go to mummy’s' car", and then of course realising that I am indeed fully alone hence my being able to carry so many bags.

It's a bittersweet feeling when I drop her off.

I feel a combination of relief, guilt, sorrow, calm, and panic.

I saw a post online recently about a man with cerebral palsy and how every year he has to have his 24 hour care needs re-assessed.

It enraged me to think that this man was having to justify what is not ever going to change.

Surely if at any point he didn't need the care he would say.

It is very sad to think he has to fight like this and it shouldn't be this way.

I am sure like me he would prefer not to need help but is incredibly grateful of it and finds it to be an essential lifeline.

It made me wonder about the future. Will she always be with us? Will I still be a carer in my mid-60s?

I cannot imagine her without me ever.

I think I need her as much as she needs me and even though we face many challenges I know that at the end of a respite day she is still with me.

I wonder if she did ever live independently would she have 24 hour care that needs to be fought for and would she have the communication skills to convey her needs. Or will she need me there for that?

It makes me start to panic about my own mortality and what would happen if I weren't here.

Obviously she has her dad too and various other close relatives and friends but it is a scary thought - one that creeps into my mind when she isn't with me and my brain is permitted to get lost in thought a little more.

I wonder what other people like me do on days their child is at school or respite.

I am no way near in a position to look for work again yet, but I do find the lack of purpose sometimes eats away at me and  I wish I were once again working in a busy office with adult conversation and coffee machines earning money and feeling independent.

I hadn't realised quite how lonely it can be. My anxiety has really peaked recently.

It has coincided with having to sell our house and move into a rental so that we can have the adaptations Amy needs.

I keep telling myself that once all of this is over that I'll be okay again and be able to focus more on my breathing technique and meditation and work on reducing my panic attacks... but am I kidding myself?

I'd love to hear more about what everyone else does to keep themselves grounded and keeps their sense of identity going?

I so often begin a phone call with, "Hi, it's Amy's mum," and by doing this I am further reinforcing my own lack of identity or importance.

I used to hold my individualism with a high regard and I can feel myself losing who I am and what I am interested in.

So I guess, at the moment, when she isn't there... neither am I.

Does anyone else feel the same?