There are so many things to worry about when you have a child with additional needs; so many things to get anxious about, stress about, feel sad about … it can be all-consuming and very tiring.
I try very hard to take one day at a time and think about what I’m doing that day or weekend, and I must try to stop thinking about the future! What will I be like; what will my child be like? I invent scenarios, then get upset and worried. It hasn’t happened (and may never happen), so WHY do I worry?
I find a way to ease these fears is to think about what worries me the most, then look at practical ways to handle them: how to get the support we need, what funds and equipment are available etc. so that I can see a way to cope.
In case you’re interested, my top two worries are:
o Not being able to lift Matthew anymore because he’s too heavy (and because I’m older with a bad back), and I’ll be struggling to get him around.
o Never having any time to myself, or having my own life. Please, don’t think this is selfish (I said these Blogs would be honest!).
I’m imagining Matthew like he is but in a man’s body. I know that he isn’t going to grow into a man overnight; we’ll have time to make sure we have the house set up for him, and us. We will apply for funding to get the equipment he will need, we’ll speak to the right people, and who knows what incredible inventions will happen over the next ten, 15 or 20 years? Something will come along that will make all our lives so much easier. He will change and develop in his own way, and we’ll change and grow with him; we’ll adjust as we go along. I know that we won’t suddenly jump years into the future with nothing prepared or in place. So, WHY do I worry?
Never having the freedom to do anything really shouldn’t worry me – I know I can get help with respite care, or residential trips, and I’m not saying that I don’t want to look after Matthew; I’m saying that I’m tired. So, if I’m tired now, how will I be when he’s older? I need a break from time to time. I want Matthew to have a life away from his mum too, as all children should.
I see couples who say they’ve “done their job” with the kids and they “get their lives back again” – no nappies, no pushchairs, no babysitters needed. Popping to the shops is just popping!
They can be spontaneous – deciding to see a friend at the last minute, catching a film at the cinema, or going on a shopping trip. I’m worried that nothing I ever do again will be spontaneous!
If I can figure out a way to stop worrying about the big things that consume my thoughts every day, the other hundred little things that worry me won’t seem as bad … says the lady with a tongue that looks like a Cornish pasty from clenching and pushing it against teeth so hard, and lots of spots on a pale tired and stressed out face!
Going to Footprints helps us both, so if (like me) you’re a worrier with a pre-school age child that has additional needs, do get in touch – they empower parents and give them the support they need too.
Footprints Conductive Education Centre is a small charity based in Nottingham.
They make such a difference to the lives of children with disabilities AND their parents and families – it really is life-transforming. If you are a company seeking to support a local charity making a difference in the local community, please get in touch. They need £200,000 every year to help families like mine.
*Thanks for reading Lucie’s blog. If you would like to contact Lucie, please email [email protected] and it will be forwarded to her.