A big old rant about respite funding and parenting two-year olds

I found a post in my drafts and although it is almost four years out of date, I am going to publish it now, for posterity. It can serve as a reminder to me of what life was like when Ted was 18 months old. Spoiler alert: it was hard. Much harder than it is now, which is sort of why I wanted to post it.

I worry that I moan on about the same old things, so I hope you don’t feel that you have read this a million times over. I guess I still feel it’s important to speak out about life and its realities. I have some wonderfully positive posts planned too, so do stick with me!

Many things on the list haven’t changed to this day – his abilities and needs are pretty much what they were back then. We get a little more sleep and have fewer feeding dramas but the workload is roughly the same. The lifting and carrying, the need for strict routine and stacks of equipment, and the lack of spontaneity are still at the forefront of our lives. I am listing difficulties, yes, but when you read it, please don’t feel sorry for me. There’s really no need. Life is good. Our family is happy. We are very fortunate (almost hashtag blessed – and I really hate to use that phrase).

One thing that has changed dramatically is me. I am more relaxed about everything – life is too short to spend it all doing therapy and with the passage of time it has become obvious that no amount of intervention is going to make Ted walk or talk. I am really, really fine with that. It’s all about maintenance and tech now. Maintaining a healthy, straight body and encouraging the use of EyeGaze technology to communicate.

What sparked the original post was a social worker. Her comments still bug me now.

I had asked for an assessment for direct payments to help me care for Ted. At this point in our lives, Rik worked away all week and I was at home with Ted. Yes, we were just about well-off enough to mean that I didn’t have to work – but I also couldn’t work. Who would have me? You can see a post I wrote here about the difficulties of working when your child has a disability.

The exhaustion from almost two years of broken sleep and a complete life-changing move to the West Country meant that I was struggling with the loss of myself and my old, fun, London life. My entire life and identity was now about Ted and much as I wanted to put him first, I needed a break!

Every mum needs a break, whether she is rich or poor, has one child or five kids, works or stays at home, has the most supportive partner or is a lone parent. Once more for those at the back: Every. Mum. Needs. A. Break. I am so passionate about this.  I guess not all mums need the government to finance this and coming from a position of privilege I wasn’t entirely comfortable in asking them to, but needs must. At that time, I needed to ask. I don’t need their help any more but I am still passionate about this issue.

Anyway…

Social Services are stretched; they were stretched in 2014 and are even more so in 2018. I get that. I know what budget cuts have done to the country.

It was made clear that to struggle was not enough. I had to be in complete crisis to qualify. I needed to be the poorest of the poor. Being low and anxious was not sufficient. In an ideal world, I needed to be a danger to Ted for us to be considered for a few hours of childcare a week. I was optimistically hoping for three hours’ money so I could clean the house and have a bath or do a big food shop with a trolley instead of a basket and a buggy. To me that didn’t seem like a big ask, but maybe I was being naive.

What angered me wasn’t so much not getting the money. I totally agree that those who are struggling more than me deserve help first. We found other ways to cope and I simply had to adjust my expectations of what help looks like. I am fortunate in having my family around. It might not have been childcare as such, but I had support. I wasn’t in *complete crisis* so I’m glad that I wasn’t taking money away from those who were, but the principle that you have to be at rock bottom to be helped still riles me. I’m angry on behalf of those I know who are less financially stable than me, whose partners earn less or have been laid off, who have more complex kids who they can’t ever leave alone, even for a minute, and who still don’t get enough help.

It’s this attitude towards respite that leads to mothers killing themselves and/or their children. In fact, it was around the time I met the social worker that this news story broke, of a mother who killed her three disabled children after becoming overwhelmed by their care needs. She lived in a big house and had a nanny. This shows to me how privilege and affluence don’t absolve you from emotional struggle. Yet respite is still undervalued, underfunded and only available to kids with intense medical needs and limited life spans. Families across the board need support and respite and to feel helped and not isolated. There should be respite available (funded publicy and privately) for all who need it. Too many families who need it cannot access appropriate services because it isn’t seen as important.

As well as raging against a broken system where mothers were sacrificing themselves to care for their children (thus actually saving the government money by providing care and keeping their children as safe and healthy as possible), the childless social worker telling me that, ‘two year olds are hard, all my friends say so’, really got under my skin. Until you have a child, any child, you have no idea what it’s like. No. Idea. Trust me on that. And to use that line while offering me ‘solutions’ like a special needs playgroup that was closed down at least two years ago is the kind of thing that’s liable to make me rage. Or still be bitter four years on…

IMG_2438
Cute, but hard to hold

This was the original post I bashed out. Pat on the back if you’ve made it this far.

I really don’t want to do one of those ‘Five things not to say to special needs mums’ posts. The internet is full of them already. And if you’re on Facebook, and/or Twitter and follow HuffPost or The Mighty, you’ll probably have read them anyway.

In actual fact, not many of those ‘inflammatory’ statements get my back up. I’m often the first to admit that in some ways, I have it easy. I haven’t had to babyproof my house – I can put a hot drink anywhere, we don’t have those infuriating cupboard locks and I never have to worry about Ted swallowing small toys or stuffing filthy shoes in his mouth or his fingers in sockets. Neither do I have to chase after him to keep him out of mischief.

That said, there is one thing that really gets under my skin. And that’s when I get told that I’m not alone. It’s hard having a two-year-old.

It is. I know it is. But my experience is not the same as that of other mums.

And what makes my blood boil is that this mantra is used as way of denying help to families.

Is having a two-year-old exhausting because…

* Your child has only one seating option strong enough to cope with his abnormal movement patterns, meaning you have to lie him down and pick him up off the floor many, many times a day?
* Your child kicks his legs and arches all day long, rarely stopping, even when sitting on your lap? Holding him makes your arms and back ache as if you’ve been to the gym (as if your back wasn’t creaky from all the lifting already).
* Your child can only eat well in one seat, in one room, with the right distraction/attention? You do try to feed him on the go but it’s nearly always stressful and futile.
* Your child can only eat foods of a certain texture or temperature so you cannot buy him lunch out or give him snacks to keep him going if he shows signs of hunger? (Not that you can ever be certain what the signs of hunger are, you just guess).
* Every calorie counts so you can’t just let them skip a meal and hope they’ll make it up later?
* You worry that every little choke on saliva or milk or dinner could spark a bout of aspiration pneumonia that will put him in ICU and weaken his chest/immune system?
* Your child is nonverbal so you spend every waking minute interpreting his crying, guessing what might be wrong from pain to hunger to thirst to wind to boredom. Much like those dark days with a newborn that everyone is glad to see the back of but are so short-lived most people barely remember them?
* You never feel like you do enough therapy? Like, never.
* You aren’t just a mum – you’re a also a carer, therapist, PA, chauffeur, advocate, researcher, cheerleader?
* Your child can’t just be a child because he is either incapable of just messing around like kids do, or you feel that you can’t waste this time when the brain is at its most effective at learning new skills.Which, by the way, you will need to work on for years, not weeks (and which your child may never learn)?
* Your child wakes multiple times a night and you never know why? Every bedtime you wonder whether this is the night when you might have achieved the magic recipe for sleep. You ask yourself: has he eaten enough food, drunk sufficient fluid, has he had enough fresh air and exercise, is he warm/cool enough, is the room dark enough, quiet enough? Will you get more than two hours of sleep in one go? (If you’re wondering, the answer is no).

Is this how it is to have a typical two year old? Thought not.

These are just a few reasons – and there are many more – that having a special needs child is tiring. It is hugely rewarding and emotional and there is a lot of love. But it is bone-crushingly exhausting. These are the reasons we need respite. Every parent does!

Again though, this is where we run into an issue. Generally, you can’t leave a severely affected child with just anyone. A carer might need special epilepsy training or know how to suction or tube feed.

Our family doesn’t have so many of these complications (and I think that’s why it’s hard to get help) but we have our issues. Ted won’t feed for anyone apart a select few. He needs 24-hr, one-to-one care, I can’t drop him at a crèche while I workout or leave him with a childminder with other kids for a few hours a day. Even nurseries will need to be carefully vetted and trained and assured that they can cope with him; not that I can afford to pay for a nursery at the moment.

So, say anything you like to me. Tell me I’m lucky that I don’t have to run round after Ted, or that he ‘doesn’t look disabled’, or he’ll ‘grow out of it’, or any of those other things that piss people off so much. But don’t tell me I am exactly the same as the mum of a typical two-year-old.*

*As a mum of a typical two-year-old now, I still stand by this. I find the physical and emotional weight of caring for a non-verbal child with cerebral palsy much greater than my typical child. My daughter is active, feisty, curious and strong-willed, she pushes boundaries, requires huge amounts of love and attention but it is very different. It’s a blog post all of its own to be honest, and I think this one is long enough. I just wanted to say that I have seen both sides now and I stand by my rant about everyone needing more respite.

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