The effect on me…

Having children affects everyone. You become less focussed on yourself and more focussed on another. You sleep less, go out a lot less and consider it a great achievement to get a shower without interruption. But as time passes the children slowly become more independent and confident and you little by little gain more of yourself back again.

Well that is how it works when you have typical developing children anyway. But what if that very needy, all-consuming, up through the night, needing a huge amount of time stage never ends?

It is well documented that parents of very young children are vulnerable and prone to depression, mental illness, and can easily become socially isolated. Health professionals are trained to look out for this and regularly check for signs that all is not well as research has shown that sleep deprivation and coping with the high demands of a baby or young child take a huge toll on parents.

But it is expected that season will pass as the child grows.

But for some, like myself, that season just keeps going on. And not because I went on to have another child either. It is because almost seven years after having my babies I still face the high demands, the daily intimate care needs, the lack of sleep and the stress of milestones not being met. My children have disabilities and the pressure parents of very young babies face is still very much the same as what I face daily. I still change nappies, I wash my children and dress them, I am still singing nursery rhymes and trying to teach one to say ‘mama’ or ‘dada’, I am still cutting food up and putting socks on that have been pulled off.

And that long-term intensity has to have an effect on me.

It takes it’s toll mentally in that some days I could just sit and cry. The doctor could give me tablets but the pain and stress would still be there. Some days the effort to get dressed and get out the house just seems too much. Except unlike parents of babies who don’t have to leave the house and can go back to bed, my children have school to get to even if one of them still only functions at the level of a 1-year-old.

It takes it’s toll socially in that going out at night is impossible. Besides the fact I have huge caring responsibilities and am permanently exhausted, baby sitters are a rarity for families like mine. Who has the physical ability to carry a large six-year-old out of a bath and dry him and dress him? Who has the emotional strength to deal with a little one having a panic attack because her mum has left the house? Even if I did find that special someone I have no motivation to get dressed up and make myself presentable when my body just craves sleep.

It takes it’s toll physically. The lifting and carrying of a baby can make a mum’s arms ache but when the ‘baby’ is two thirds of your height and a quarter of your weight how do you manage? Seeing to personal needs of a toddler who decides to crawl away is a challenge. Seeing to the personal needs of a child who can bite, punch, kick and climb is an altogether harder challenge. When they are long past the age of using a baby change in public and you have to find a way to meet those needs in public toilets not build for that purpose your body aches and bends in ways you never thought possible.

It takes it’s toll financially. Babies cost. I often hear parents complaining at the cost of essential items like prams, car seats, cots and nappies. Second hand is sometimes an option though. But not when you enter the ‘special needs’ market and you have to look for elastic waisted soft trousers for a child who can not dress himself yet aged 6. Or you have to think about paying for private therapies not available on the NHS. Then there is the cost of hospital trips, the fact the schools are miles away from home and special needs sensory toys come at a huge cost. And I still have to buy wipes, and bedding and nappies and other ‘baby’ items six years on.

It just all takes it’s toll on me.

The days of people ‘popping by’ to see if I am ok has long passed. The excitement of coming to see those new babies has long gone. The phone calls from friends to hear how the babies are stopped many years ago. Yet the reality of my life never changed much.

Yes, my children have changed me for the better, but full-time caring for a disabled child takes it’s toll.

Please, if you know someone who has a child with any sort of disability, think about and do what you can to help the child. But have a think what you could do to help mum or dad too. Believe me they need support more than you may ever realise.