- Chase up DLA review
- Confirm dietitian appointment
- Arrange OT appointment
- Arrange to visit prospective primary school
- Arrange parents’ meeting with PACE
- Apply to funder for a. driving lessons b. iPad
- Fundraise to cover rehab costs
- Chase up about penetrative damp
- Chase up landlord about Disabled Facilities Grant
I feel like I’m drowning.
- Financial returns for direct payments
- Get thermal socks for Isobel
- Get cutaway cup for Isobel
- Confirm medication delivery with Pharmacyspace
- Book dentist
- Listening/lipreading practice
Is there no end to this?
- Complete SEO posts
- Draft profile interview questions
- Book review
- Preparation notes for CEO meeting
There. That’s my day all mapped out – although of course, that doesn’t include household chores still outstanding: stuff like laundry, washing-up, emptying/loading the dishwasher, sterilising syringes/formula bottles, dusting, cleaning, vacuuming… And please, don’t ask me about the food shop.
It’s amazing how fast my day goes before I realise it. I often feel obliged to stay up well into the small hours just so I can try and cut down my to-do list – I so hate seeing it this long. The only part I’d rather do, to be honest, is the last four items, if only because they give me a break from the monotony.
This is not so much a sign of age as an indication that N and I have too much on our plate. There is nothing we could cross off the list without doing – because they all need to be addressed. (Yes, even the last four items. That’s my livelihood we’re talking about here.)
Driving lessons, thermal socks, an iPad – these are essentials, not luxuries, that we can’t live without.
And thermal socks really are indispensable; we can’t expect Isobel to toughen up during the cold snap. Even with tights and two pairs of socks under her jeans all day, her feet are absolutely freezing at bedtime, simply because she can’t run up and down to keep warm. With so many appointments like the dietitian and the dentist to keep to, it’s unfair and impractical, too, to rely on N as the sole driver the whole time. Just like me, he needs to work. And the iPad? Possibly Isobel’s only chance of communication.
So excuse me for showing my irritation when a parent of a non-disabled child sees me sigh with fatigue and says, “I know exactly how you feel.” No, you don’t.
Parents of non-disabled kids don’t have a to-do list like ours. They don’t have to physically exert themselves in order to carry out their child’s daily routine, because by the time they reach Issy’s age, that child will be able to do all of it independently.
So what if your three-year-old throws temper tantrums? They can at least choose. Isobel doesn’t have that luxury – and you can’t say for sure either that she will, because there’s no knowing what to expect with a CP kid, and it’s not even the prerogative of a parent of a non-disabled child to suggest otherwise. Well, they haven’t had that experience, so how would they know anyway?
Time management doesn’t cover it either. To spread out my to-do list over a fortnight or so would be impossible, because everything has to be ticked off ASAP before the next 5-10 items get added onto it. I’d welcome those new items only if they help us keep our heads above water financially – but the far greater likelihood is that they won’t, because far too many people involved with Isobel don’t come as part of a one-stop shop, so we stand to lose even more potential earnings just chasing them all up individually.
Anyway, to skimp on anything means, ironically, skimping on either our finances or the children’s welfare, particularly Isobel’s – which is the last thing we want to see happen. I’d much rather miss a night’s sleep than let her freeze her bottom off.
Parenting – it goes without saying – is hard work, especially if you’re juggling that with freelance commitments. But (this is the bit that parents of non-disabled children don’t get) parenting a disabled child is even harder work, worse if you have two or more.
Every loving parent sacrifices time for their children. Parents of disabled children sacrifice far more than that. A huge proportion give up their entire livelihood – not because they’re lazy or irresponsible, but because their to-do list has become insurmountable. To make matters worse, there is no infrastructure to cushion them against the mental, social, psychological and financial blow that will serve them. That is why bringing up a disabled child is so expensive, and why parent-carers feel so, so alone.
But how do you explain that to a parent of a non-disabled child? It’s impossible. Sometimes I keep talking and explaining and blogging and writing, and it feels like nobody is listening. Who in my locality can I confide in about this?
Sometimes, when I describe my day to a parent of a non-disabled child (especially if they are themselves non-disabled, or view themselves as such) they roll their eyes or say, “Yeah, yeah, whatever” – sometimes making the wriggly “W” with their fingers – because they can. They probably think I’m complaining too much. But of course they would. It feels too much like hardship, and they’d rather not have anything to do with it.
Well, good for them. They have the means to walk away. I don’t; that’s the point. Neither Isobel, N nor I (no, not even Ben) asked to be in this situation. None of us planned to have a to-do list that feels like somebody’s trying to kill us.
All of which has got me thinking. Beyond the followers who have subscribed – and the family and friends who comment on my links via Facebook, Twitter, LinkedIn and by email – just how many people who read my blog are hearing and/or non-disabled? How many parents of non-disabled children? How many single childless people? And how many of any of these people believe what I’ve just said?
I know I shouldn’t waste time thinking about them, and focus instead on people who care. And let me stress, I value their loyalty more than they will ever know.
But my list has a habit of making me feel walled-in. Returning home from 30 minutes’ switch-off time on the local canal, once again I can feel my shoulders sinking at the very thought of it.
Do you know what happens when you stare at a wall long enough? You start forming shapes and shadows with your mind’s eye. Imagining things. And that’s when harsh reality kicks in – and you realise that you’re staring at the wall because there are many, many more people who don’t care about your crappy to-do list.
Justice will not be served until those who are not affected are as outraged as those who are. Benjamin Franklin
Related articles:
- The horrors of bureaucracy (themostynthomasjournal.com)
- Inclusion in education is an afterthought (themostynthomasjournal.com)
Hi Melissa,
I’m a parent of less-disabled child. I am a less-disabled, hearing parent. I do care when I read this crushing list that you have. I do believe you that I can not begin to understand what this is like for you. My heart goes out to you. I just started reading your blog a couple of days ago – I got initially intersted because my daughter is also named Isobel (with the same spelling, too). But yesterday, I started with “the post that started it all” and kept reading until I reached your most recent update. Yes, you write that well, yes, you write in a way that makes me want to understand the best I can what life is like for you, for Miles, for Isobel, and for Ben. Does it help, even a little, that you have a complete stranger rooting for you? I’ve already begun thinking of how I can donate to your fundraising efforts. I hope that I’ll be able to introduce my Isobel to your blog and that it will increase her understanding of disability and her empathy and compassion as well. Does it make a difference for you that you’re making a difference beyond your more immediate circles? I hope something I’ve said can help even the smallest bit.
Erin
Dear Erin
That made me cry. If you had come up to me on the street and said that I would have hugged you. Thankyou for reaching out. x x
Melissa,
Of course I know you, Isobel and Miles. And I see every day at PACE other children and other families coping, or trying to cope, with the sometimes apparently insurmountable additional effort required when there is a disabled child in the family. I read your interesting and informative posts and see deeper into the lives of those with whom I work, and every time my heart goes out to you and your family, and all the other families I see at PACE. I am, as you so rightly surmise, completely unable to really understand how it is for you, as I am one of those parents of non-disabled children who may have the occasional moan about how busy life is and how I don’t have a minute to myself. Working with PACE, and reading your posts, never fails to bring me back to my own reality and make me more determined to do all I can to make life even a little bit easier for Isobel, yourselves and others – never mind that at home I have the washing and ironing piling up. As you say, at least I have the choice. I really hope that you manage to bring your to-do list to a more manageable level and that you can find time for yourself and your family. You’re all amazing, and truly worth it. Keep it up, we’re all cheering for you!
Julie
Thankyou Julie. We are both touched by your kind encouragement and support. I’m not sure if we’ll ever cut that list down to size.
But I do take solace from the fact that this post was already the top most-viewed post on its first day (it had three times as many views as my Mr Tumble post in its first day). So people ARE listening.
Melissa
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Yes indeed, they are listening, Melissa. 3 non-disabled family friends have already commented after I shared on fb. You have a great way of getting to the nub of the matter! James x
Hurrah! Thanks for sharing it with your friends. I blog for The Huffington Post too – think they’ll be interested in this too. Will let you know x
This is my visit to your blog. I am not disabled and nor are any of my family members. But I am human and I can sense your frustration, isolation and lack of enough support. People need to read posts like this which is why it is so important when people like you take the time to write them and hopefully help things get a little better all round.
Hoping you are tapping into any support organisations out there.
Thankyou Kate. You are absolutely right – it was important for me to put my feelings out there, and as it turns out, people did listen. In the last two days, the post is now in the top 15 most-viewed of all time
Amazing post, I myself have non-disabled children however I myself have many disabilities due to having Multiple Sclerosis, I know the endless list feeling and the closing in feeling. I feel for you so much, I really do. If I could help even for a day I would. Nothing I say will make it better however I am always here if you need to talk and I do know some of these feelings. Especially the inability to walk away because we just can’t. Sending you more hugs and love than you will know xxxx
And I send you lots of love and hugs in return! Thankyou. It’s really doing the rounds on Twitter as I type, which I think is just brilliant x x
“But (this is the bit that parents of non-disabled children don’t get) parenting a disabled child is even harder work, worse if you have two or more”. This statement is not always true. We (parents of non-disabled children) do not work as hard as you, but we do get it. Because we struggle with our non-disabled children so much we can’t imagine having a child with disablities on top of that. At least that is how I feel. You are so inspiring, Mellisa. You remind me I have little to complain about. I admire you for all you are doing and all you have left to do to care for your family.
Thankyou Nate – you are as sweet as ever. I’m honoured to know you as a fellow blogger. x x
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My mum raised my brother who has severe learning difficulties in the 70s with no help, not even from most family members who found my brother too much hard work.
She also successfully raised my other brother and I.
I would have loved for her to have been able to blog about what she was going through back then because she truly had nobody who understood.
It’s so good that you’re bringing this to the fore, people DO NOT understand what it’s like to bring up a disabled child or a child with learning difficulties. They think they do, but they don’t.
Even with a brother with learning difficulties I don’t know how truly hard it was for my mum.
Keep telling people, the more you talk perhaps the more people will actually listen.
I can relate because I am a parent who has bipolar. Managing it is a full time job as I do not trust anymore the use of pharmaceutical drugs. It’s very easy for me to be in your shoes and look at your life from both the perspective of having a disabled child and being a parent who has a disability. I can tell you this with certainty you will always feel alone. So you have to use that energy from the sadness and all the other emotions you experience into one basket called the love of living. Forget anyone or anything that brings stress into your life. I’ve unbelievably made it through raising with my loving wife a family of four. They are all young adults this year and what I focused on with them is to build the dream in them. I’m so proud to see then with the courage of their conviction out in the world making a hell of a dent. When I ask them if my illness affected their lives they tell me unanimously yes but in a positive way. They understand I was once a superstar investment banker who got sick. This loss I had made them realize to value and appreciate what they’ve got and how to go after their dreams. Don’t let others bring you down and more so don’t bring yourself down. Be proud and hold your head high in silence. There will always be someone who notices and those people will bring you joy. Best Wishes and hugs. Michael.
Dear Michael,
It is important to remember that there are major differences between growing up deaf, as I have, and developing bipolar later in life, as you have. Being deaf is all I know, so I have lost nothing in that respect. It is impossible for me to say that I empathise with your particular disability – much as I would like to – simply because, as I’m sure you agree, every disability brings its own challenges. I explore this in more depth here:
http://www.huffingtonpost.co.uk/melissa-mostynthomas/disability-has-much-to-te_b_2027208.html
My biggest concern is not my and Isobel’s disabilities, but others’ attitudes towards them. This country is being run by a government who doesn’t like diversity, so much so that they have helped generate a rise in disability hate crime through fraudulent efforts to blame millions of people with disabilities for the current deficit. I believe this to be the cause of the crisis I and many other parents of disabled children are facing right now in terms of managing our to-do list.
The point I am trying to make is, with the right support in place, it doesn’t have to be that way. Carers UK have been campaigning for years to implement a National Carers’ Strategy (similar to the National Childcare Strategy some years back that completely transformed childcare):
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_122077
Recently, I read a post in BLOOM that discussed the positive experiences that CAN be gained from parenting a disabled child. Everyone who commented on that post agreed that unfortunately, this aspect is not widely shared in the mainstream media because people find it too hard to believe.
But now that I am myself bringing up a disabled child, I can say with confidence that it is very much an emotional rollercoaster – you can go from pure elation and joy to utter despair and desolation. You can experience both ends of the emotional scale, because that’s the contribution disability makes to humanity. Sadly, some people with no prior experience of disability, or experience as a parent of a disabled child, refuse to see it that way. All they can see is the disability and the adversity and all the other negatives you can think of – and consequently, that aggravated my sense of things closing in.
That’s what made me snap. I’d just written the above post for BLOOM and the HuffPost and felt frustrated that the majority of people who would agree with it would be disabled, or parents of disabled children. That’s why I started talking about people not caring.
Warm regards,
Melissa
Reblogged this on Melissa Mostyn-Thomas and commented:
This is now in the top ten most-viewed posts of all time.