Jill and Ollie – finding the
LOCKDOWN DIARY KEPT BY MUM AND DOWN’S SYNDROME SON
A MUM and her seven-year-old Down’s syndrome son started to record a Facebook diary as soon as lockdown began and have continued into the Leicester lockdown, recording a unique insight into their lives, writes Tess Rushin.
Jilly Humphry and her son Ollie started the daily updates to distract them from anniversaries associated with Ollie’s older sister Lily’s death.
Lily, who also had Down’s syndrome, died of kidney failure a month before her 10th birthday on May 24.
During lockdown, Jilly and her son have had the first anniversaries of Lily’s death, her funeral which was on June 17 and her birthday, on June 25.
Jilly, 46, said: “We went into lockdown slightly before everyone else as Ollie has a compromised immune system.
“We weren’t shielding but were told to isolate as far as was possible.
“So initially I’d planned the diary to sort of log his school work and keep me motivated to keep trying to get him to work, but then it just evolved in to a record of each day and it’s ups and downs.
“I also needed something to distract me from all the anniversaries around Lily’s death.
“Most of our support services had moved to phone contact only and as Ollie can’t access these his support had stopped.
“During lockdown we had the first anniversary of Lily’s death and her funeral and then her birthday.
“Keeping the diary helps me to try to find something positive each day.”
The entries include pictures and video – some are entertaining and some are poignant.
Jilly, from Leicester, is now on day 124 of the diary and each day brings a different story – and many times a different challenge.
Lockdown for Ollie started on March 18, and this was the Day 1 entry Jilly recorded:
DAY 1
Protective Isolation and Home Education. Things I have learned:
Ollie’s ability isn’t always matched by his motivation.
Face paints are not a good idea when Ollie has stripped off.
Painting requires more protective clothing than I currently possess.
A bath in the middle of the day is absolutely fine.
The iPad needs to be hidden during the day.
It seems harder to keep one child engaged all day than a whole class.
Other entries in the diary include:
DAY 2
Today we have learned:
Not to leave pens on the table after we have been working as mummy’s new wallpaper is not fully washable.
Lovely as Ollie’s picture was I would have preferred it on drawing paper and not my wall.
That when Ollie chooses “helping mummy” as an activity it may not actually be considered helping.
Ollie’s attention span decreases rapidly after 10.30am.
Ollie expects me to take a photo of him working approximately every 30 seconds.
Boogie beebies is still the best kids workout.
Now that he is able to choose what he wants to wear every day we may need to work on colour co-ordination and what’s suitable for the weather.
DAY 3
Today we have learned:
That in order for mummy to get any housework done the iPad has to be brought into play.
The visual timetable is very effective but now Ollie knows where the symbols are he edits it through the day.
That mummy needs to improve her fitness levels if she has to dance to the Wiggles for any length of time.
Ollie has a great imagination and will draw a range of things, just nothing he has been asked to do.
Apparently, mummy makes a lot of mistakes with her drawing and they get big crosses on them.
We are three days in and mummy has a headache and is exhausted.
DAY 4
Today we learned:
Ollie really likes his visual timetable and structure. He asked for school at home even though it is the weekend.
He doesn’t need long at all to get himself into trouble.
That the time it takes to wash seven paintbrushes is far too long to leave Ollie unattended.
A bottle of blue paint spreads a very long way.
Experimenting in how angry you can make mummy is not a good plan.
New carpet washers are expensive.
The consequence of mummy having to buy a new carpet washer from Argos to clean your carpet is that mummy uses the last of your Argos birthday voucher as a contribution.
Mummy is close to starting to drink alcohol.
World Down’s Syndrome Day. Can’t say we are celebrating it but we are marking the day and remembering Lily.
DAY 9
Today we learned:
Some of our felt pens are not washable when applied to the face.
Minnie Cat is almost as much of a troublemaker as Ollie.
We can have a chat with our neighbours in the next two houses by shouting over the fences.
Ollie wants to help cook tea but is something of a liability.
iPads are the best invention in the world – until they run out of battery.
DAY 26
Today we learned:
Once he got the hang of it, Ollie loved the concept of an Easter Egg Hunt. So much so that we have played it on repeat all day. He understands how to hide things and find things but if he’s hidden it he can’t resist the urge to tell you where he’s hidden it.
Having watched Jesus Christ Superstar again I’ve remembered how amazing I think Tim Minchin is.
Neither Ollie or I have actually eaten any chocolate today.
Ollie thinks it is a great game to squirt me with the garden hose. Thankfully, today I was inside.
DAY 39
Today we learned: Mummy’s head is much better. Yesterday’s power cut ended at 1.30am this morning.
The wildflowers we planted on Lily’s grave are growing nicely.
Washing the car is fun, especially when you soak mummy with the hose. Not so much fun for mummy.
Enforced dentistry on mummy is