Parenting and disability


I have been extremely lucky with chid-care over the years, even before my diagnosis. I have a 5 year old son and a 2 year old daughter and luckily have a great support network around me to help me bring them up.  The Husband has a great job where he’s gets a full time salary for part time hours and generally only works a few hours a day which means he does the school run in the mornings and is often around to do the bedtime routine too. My Mum also lives nearby and helps me out which is a life saver when fatigue rears its ugly head and bathing 2 children is beyond me!


Parenting is a huge responsibility and can be challenging but with a disability all these challenges are magnified. The Husband is working all day tomorrow (bank holiday Monday) and if I were able bodied I would have a host of free activities lined up to keep the children busy. I live really near the beach, for example and have fabulous parks nearby. I could also walk to the South Downs from where I live or through the woods for a picnic. I can’t do these things, especially as my daughter is at that unpredictably road ignorant age where she could run off in any direction at any time! This is what terrifies me the most, all I can do is yell “stop” in a frantic voice as any attempt to run after her would result in a tangle of limbs and sticks all over the road! I also find it incredibly difficult to get her strapped into her chair safely and am usually exhausted before we even set off anywhere so feel safer at home.

Don’t get me wrong though, my kids have a great life and do lots of activities and have lovely days out but only when a family member steps in or The Husband is around. I do worry though when I’m on my own with them that watching TV all day will fry their little brains and turn them into square eyed zombies!

Because of this I have developed strategies to a) break up the day a bit and b) drag them away from the TV. I was at home with them all day on Saturday and announced at 10.30 that the TV was going off till further notice. After the moans and groans had subsided they devised a cunning plan to make a den. This involved moving all the blankets, pillows and cuddly toys they could find into the lounge and piling it all up on the floor. Although the mess was alarming this game went on happily till lunch time when I was amazed to see them tidy it all up again afterwards with only  a small amount of nagging from me.


My next idea was inspired by Andy Murray’s Mum who described setting up obstacle courses in her hallway for her son’s when they were trapped indoors by the drizzle of Dumblane. We held a mini Olympics in the drive way to the side of our house and the children ran up and down for ages. Another favourite is our dancing competitions where I put the I-pod on full blast and they leap around the living room! This is a real mood lifter for all of us and I get to educate my son on what is and isn’t good music. I am very proud to say he already knows the difference between Jimi Hendrix and Mick Jagger!

I am always looking for ideas to keep the kids occupied, like most parents and would welcome any suggestions!

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