This post is part of a series called “How do you do it?” I asked readers to share how they manage a typical day in their family life. Of course we all know there is really no such thing as a typical day in family life, but this gives us a sneak peak into how others are doing it and hopefully you will find some tips that can help you in your day. You can read other posts in the series by clicking here. Thank you so much to the women who generously shared their stories!
What is your name?
Where do you live?
Tell me a little bit about your family
My wonderful husband is a teacher and we have a gorgeous 8 year old son who is severely disabled and has multiple complex medical conditions.
I am his main carer. All of his needs are met by carers 24/7. He attends school when well enough, with a 1 to 1 health care assistant or myself if his regular carers are unavailable. He has a sleep disorder and needs care and watching all night to keep him safe.
What do your mornings look like?
My son can wake up at any time from 12.30 onwards! So sometimes the ‘morning’ starts very early. He has medications at 5am and I prepare his 8 am medications and feed ( he is tube fed 20 hours a day). I try to squeeze in time to sort myself out- shower and breakfast, but not always possible.
Washing and dressing him takes me about an hour and then he needs his stomach vented of trapped wind for about an hour before he goes into his wheelchair and off to school with a HCA in a taxi. Then I do all the jobs most people do… Washing, cleaning, sorting, gardening, ironing ect…
Try to go for a jog 3 times a week. Go to Pilates class once a week when viable ( got to keep my back in good shape for all the manual handling)
What does your after school time look like? (eg 3.30pm – 5.30pm)
My boy returns home at about 3.45. I transfer him out of his wheelchair onto his bed for a stretch. He has more medications and a fresh bottle of feed. I again vent his stomach of air for about an hour or longer if he needs it. Then I transfer him into his comfy chair and he watches TV or we do his homework or cuddle our New Guinea pigs.
What does dinner time look like? (eg 5.30pm – 8.00pm)
My son is continuously fed through a tube into his small intestine for 20 hours a day so we don’t have a ‘family meal time’. My amazing husband cooks dinner if I haven’t already and we tend to eat it I front of the TV once bubba is is asleep. ??
What does the kids’ bedtime process look like?
At about 6.45 hubby returns home and we spend a few minutes catching each other up on our day. At 7 hubby makes up more medications to help my son sleep and I dress him for bed. We then spend a magical 1/2 hour altogether in my sons room. My husband reads a story ( currently Wind in the willows) and I cuddle my boy in bed while venting his stomach again so he can sleep comfortably.
Once he starts to drop off hubby leaves us and goes to make dinner and I stay holding him until he is sound asleep and has stopped having seizures.
What happens once the kids go to bed? (eg 8.00pm – 10.30pm)
I turn on the baby monitor and hubby and I breath a huge sigh of relief as we veg out in front of the TV with dinner. My son can wake several times during the course of the evening and need repositioning in his bed to keep his airway safe.
Hubby goes to bed about 9.30. I sleep in my sons room 4 nights a week ( we have respite 3 nights). I keep a close eye on him as he sleeps ready to reposition him or vent his stomach as needed. He has medication at 11 and fresh feed prepared at 12. I then try to get some sleep, but often he wakes at least every hour and needs me.
Do you do any preparation for the week on weekends and if so what?
Wash/ iron all school uniforms needed.
Plan meals and do online supermarket shop.
Write in my sons school contact book.
Synchronise my paper planner with my phone calandar.
Look at the week ahead so I know if my boy has any hospital appointments coming up.
Check his medications and make a list for the pharmacy.
Anything else you would like to share?
Although I don’t ‘ work’ any more, having a disabled child is a full time job and there is absolutely no way I could manage without a brilliant gentleman of a husband or my amazing parents.
Today’s post reminds me how different my life would be if I had a child with special needs. I am grateful to Gayle for sharing her story.