Health, self-care, SEND approaches

Time for you

Being a parent is a full time job – we know this.
Being a parent carer is the same – on steroids!

Our children with additional needs also require additional time. Additional attention, additional affection, additional looking after.

So how do you find the essential time for yourself, your partner, your friends that will allow you to be the parent you want to be?

In a world of compromise I’ll offer a few ideas that helped me from time to time. Let me know in the comments of things that have worked for you!

  • Develop the idea of “quiet time”. Maybe start with snacking after school with your children, chat about your days. Then everyone goes to their room, their space for 10, 15, 30 minutes to rest, process and reset before coming back together for the evening. As time goes on, you’ll be able to have an hour of quiet time that you can use to enjoy their presence without them clamouring for your attention.
  • Consider “joint journalling”. Many of our children suffer from separation anxiety – it’s a real thing that we need to be very careful with. If you decide together what your creation will be (for example, today’s theme might be the weather), then go to your separate spaces for 20 minutes to draw, paint, write your part of the journal. Then come back and compare, add each part to your joint journal. Your child will know that in that 20 minutes apart from you, they were your sole focus. Slowly they can learn that you exist away from them, and you still care about them when you can’t see them.
  • Community… this is a huge one. How many families do you know from your child’s school. Even in primary school this is a really tough one for our families. Maybe ask your child’s teacher to help you make links with another family. The SENCO (special educational needs coordinator) might put you in contact with other families like yours, but don’t discount the value of making friends in the wider world.
  • Extra-curricular activities. Be they after school clubs, scouts, short breaks for disabled children, these are a breath of fresh air for all parents and should be available to our children too. You may need to talk to the organiser about your child’s needs, or even talk to the school about a shorter school day to make such a thing possible. But be brave – talk to people about what’s out there.
  • Baby-sitting. This can be impossible, or seem impossible. But even if you do not have family that can help, it is likely that one of the teaching assistants at your child’s school would be more than happy to help out. There may be some charities that can offer support, but if you’re able to use the people in your immediate community, it will last longer. Start by having the babysitter help out with your normal afternoon or weekend routine. Eventually, you’ll be able to leave the house for ten minutes, then long enough to run a small errand. Build up slowly, and you will be able to manage a proper outing. Bear in mind that there are also agencies that offer specialised babysitting.

Who are you? What do you want to do?

It’s really important for any parent to try and hold on to a sense of identity. Many of us forget that, and it can be very painful to “wake up” one day and discover that we have invested our whole being into parenting. Because whatever the degree of need our children have, they will eventually be grown… and we can find ourselves lost, alone and very much on the verge of despair.

So here’s my challenge today: who do you want to be? What hobbies would you like to try? What was your passion before having children?


How do you Holiday?

It’s late summer as I write this and I know that many families like mine, like yours are reaching the end of their energy reserves. Our children with additional needs more than most require a “village” to raise them. And the support systems of school, clubs, respite seem to become very scarce indeed during the holidays and this is especially true of the long summer break.

Does your child sleep? Can they ever be left unsupervised? If the answer to these questions is “no”, chances are that you have now had weeks of unending alertness and your body and brain have had enough. Not to mention juggling work, finances, extended family who may just add to the chaos. So… what’s to be done?

The first thing I would suggest is to throw out the “should” book. The stories we tell ourselves of what family life “should” look like. In this book, the holidays are so often portrayed as a blissful time with siblings playing happily together, parents watching on with tender smiles. We need to pay attention to what our children and we need – whatever that may look like.

In my case, going away on “holiday” was never an option. The stress of transition, the difficulty in managing medical supplies and the uncertainty of what that holiday might look like meant that going away was absolutely not worth it.

Our three children had very different needs, so we tried to meet them as and when we could. Mostly we stayed home and tried to keep normal daily routine going – that was the easiest way to thrive. Our daughter even had school uniform dresses because she found the change too difficult (I did buy different colours of school dresses for my sake!!). She would often plan lessons and “school” activities as a way of coping with the fact that her routine had been disturbed.

For our youngest son, the holidays usually meant badly needed rest, so he was often in bed much of the time. Anything more ended in tears of exhaustion.

And our eldest thrived in holiday times. He found the routine of school dull, unchallenging and restrictive, so the freedom of the holidays was a relief – IF he was given complete control! And he often found the first couple of weeks very difficult as he managed the change from one environment to the next.

Seemingly small things allowed us to create really happy memories – one summer, we splurged on three boxes of Lego that gave us a wonderful family afternoon. Not much maybe, but it’s a memory all of us carry to this day.

Finding somewhere that feels safe and comfortable for days out, or even half days can be remarkably replenishing. Each year, I would try and save for a year’s pass to Chessington World of Adventures, or Wisley Gardens (those happened to be close and work for us). In fact, we mostly used those for after school picnics, never venturing on the rides, but enjoying a space that felt safe.

Maybe one of the biggest and most challenging “shoulds” that I gave up was the notion that we should stay together as a family unit during holidays. While we did this during the summer, Christmas was the one that felt hardest. But for a number of years, we split the family because it was better for everyone. One child went to their grandparents (sometimes with one parent) and the other two stayed home. This gave everyone a break, and allowed the children to have their very individual needs met. Otherwise, how do you manage one child who cannot leave home, with another who desperately needs to get out?

We need to build a new set of stories I think, to share with each other how holidays can be so that we and future families allow themselves to trust their instincts and holiday in the way that suits them. To that end, I’d love to know how you holiday! Please share some ideas in the comments 🙂