Distancing Diaries. Day 45

Day: 45. After a fair bit of consultation, A and I decided it was definitely Thursday today. It's hard to tell. Mood: low. Slow going. My friends and I, we get through the difficult times by lighting torches. Planning things to look forwards too. The big things, holidays, weekends away, perhaps even coinciding respite so we can run away together. The littler things; a night's respite, an afternoon walk, a day playing hooky with both children in school. An hour alone in a cafe, a haircut. These are the little things we hang onto when times are tough; just another few hours and then respite. Another night and then school. Another week and then we will be together again.

And all this has ended.

It's not the toughness of every day, it's the knowing that tomorrow will be the same. And tomorrow and tomorrow and tomorrow.

There can be phone calls, sure. And video calls. And there are wonderfully kind friends and organisations sending so many lovely things; friends dropped in a picture made by their children this morning, with a home made bookmark and a pipe cleaner bracelet and a lovely dear little bar of soap. Sweet, kind, thoughtful. Different friends dropped a survival package on the doorstep yesterday, with toys for the boy and magazines for the girl and gin for me, lovely. There are flowers in my windowsill, there are smiles and waves as people pass by. We are not forgotten. Statutory authorities are checking up on us too, making sure that we know we are not forgotten. We are among the lucky ones who get a regularly food delivery slot, and we get 99% of what we order, week after week after week. This is all good. Very good. Friends keep us ticking over, collecting glasses to be mended, finding glue sticks and antacids and all the things we forget to add to the shopping list. We have very good friends.

And yet.

Coronavirus briefing yesterday, a question was asked by the parent of a child who is, like A, shielding at the moment. And Matt Hancock answered initially with a load of positive noises about how children with EHCPs would be supported within education once the schools go back. Before admitting that, no, children who were shielding would not be going back to school any time soon; would not in fact be going anywhere at all until there is a vaccine. We knew that already really; the risk doesn't disappear just because twelve weeks have magically passed since we got The Letter, informing us of our shielding status and our new normal. But we were halfway through our twelve weeks. And even though we knew really it wouldn't change after that, it felt significant, that maybe there was a bit of hope for things to be different.

Not so.

And so we trudge on. Time takes on a new meaning. A has her own internal clock, informing me to the minute when she expects her next cooked meal to be placed in front of her. It's probably a good thing; I'd lose track of mealtimes as well as days otherwise. People knock at the door, and we stand a safe distance apart as they collect or deliver; today we traded three face masks for half a dozen eggs and several yards of knicker elastic, destined to be made into more masks. These moments are precious; a three minute conversation in the rain where we used to have several hours over coffee. D cannot understand why he is no longer allowed to run out of the front door, why people knock but never enter, and why he can never leave. He drags me to the back garden instead, where we do some stomping circuits on the rain-wet decking, and send showers of spray and damp blossom (and please no hairy caterpillars) flying by swinging in the apple tree. He likes the back garden. A has not left her table in the sitting room except to go to bed or for personal care for a week now. She has decided she no longer likes the garden. I make a note to order her an extra vitamin D supplement since she insists the curtains are drawn if there is even a hint of sunlight approaching her table.

Post today. D's autism assessment has been postponed indefinitely. A cannot have her eyes checked. Urgent gastroenterology and dietician appointments have been delayed. Blood tests cannot take place. Dentist is looking unlikely. Podiatry has stopped. A multitude of other appointments have been cancelled, turned into phone appointments, or pushed back a few months with the acknowledgement that they will likely be pushed back further. Routine ones, new referrals, nothing (hopefully) life or death, but all appointments designed to keep both children ticking over and as healthy as they can be. And yet within all that, D's preschool boosters are due, and of all the appointments we have, these should apparently not be delayed. Well they're going to have to be; I am not taking him to the GP surgery this week or next.

And now the house is silent at last. Children sleeping sweetly, and we can hope they might both last the night. My work is done for now, until she needs turning and he needs milk. But for now, peace. Tomorrow is another day. Tonight I can't see how it can be any better, or really any different. But it might be. Let's hang onto that.

Days 40-42

A weekend. Saturday means pancakes, so pancakes it was, a reminder of the time when Saturday was our one unrushed morning of the week. We could have pancakes every day now, but we stick to differentiating weekday from weekend, marking our relaxation, with carefully rolled, chocolate spread filled, delicately lacy pancakes. Well, A and I do. The boy grazes, A’s usual, on a fine mixture of frozen peas, dried pasta, Pringles, and cat biscuits.

Deliveries! Seed potatoes and carrot seeds. Much planting. More caterpillars in the death bucket. Fun with the hose; my boy loves water. More deliveries! A packet of school work for A to gloat over, shuffle, sift into piles, file away carefully untouched, review, make a plan for what order it should be worked through, organise into plastic pockets, but otherwise leave entirely untouched. And just like that, another day done.

Sunday. Weekend, so, pancakes. Church live streamed - this works so well for my lovely girl. She can turn the volume down, fiddle with her playdough, doodle in her notebook and still pay attention to the service, without being overloaded by everything else happening at the same time.

Roast chicken. With bread sauce. And everything else. My girl voluntarily clearing the table so that we can eat together. My boy grabbing chicken slices from my plate to squish through his fingers, stomp on, reject very thoroughly before returning to his beloved dry pasta and frozen peas.

A church youth zoom session for A, and then the sudden legalisation by her, at 4pm, that she had not had any of her music or her iPad all day up until this point. Don’t think that’s happened since I pulled her out of school. A quick music chill then a friend zoom too, whilst my boy and I bounced and swung and introduced more caterpillars to the death bucket. Tired of dodging falling caterpillars, I took the saw to the apple tree. Not the whole thing, but it no longer has branches at head height. I shall regret this in the Autumn, when none of the apples are in easy reach. But it works for today.

And then today. Monday. A picked a small piece of work from her folder and did in fact complete it with a little bit of prodding. D found the improved head height under the apple tree made for greatly improved swinging too. And I found a little butterfly which kindly paused long enough to let me admire it. Mum called by for a socially distanced delivery of tulips and donuts, always appreciated, but not by D, who cannot understand why I block him from running down the ramp in exuberant greeting. And very lovely friends and committee members from a local parent support charity dropped around a survival pack - pens and magazines for A, toys for D, and a very mini bottle of gin and tonic for me. Totally unexpected and really appreciated.

Days 38 and 39

More caterpillars in the death bucket. More sycamore in the garden waste bin. More caterpillars in the death bucket. Food into the boy. Food into the girl. Laundry. Cleaning. Mopping. Caterpillars in the death bucket. Attempted speech therapy with the boy. Coffee. More coffee. Caterpillars in the death bucket. Climbing stepping spinning squeaking. Caterpillars in the death bucket.

Rinse. Repeat.

Day 37

An attempt at video link speech therapy today. Partially successful; D enjoyed seeing his therapist at least, and demonstrated his current lack of intentional use of loaner VOCA nicely.

Big excitement, the arrival of a new steam mop. Big disappointment as I refused to let it be a toy...

And more glorious sunshine. More caterpillars to be drowned in the death bucket. More flowers coming out. More swinging, sliding, climbing falling bouncing and another day done.

Day 36

We should have been at a Multi-disciplinary Assessment for the boy today. A very long awaited appointment to look at his development, his communication, his general overall uniqueness, and to see which, if any, boxes he fits into. We were expecting him to be recognised as autistic. Instead, we are here, still at home, hospital remains closed to outpatient appointments like this, and whilst there has been zero communication, I assume a new date will be sent out in due course. We’ve only waited 18 months since people finally agreed to put us on the waiting list.

Today I have also had to reject the offer of a telephone based CAMHS appointment. Again, we’ve only waited two years for this urgent referral; what’s another few months?

And a phone call from social services, asking me to nominate two alternatives for if I am suddenly unavailable to care for my children due to getting ill myself. Thanks. Shall I make my will too?

Poisonous caterpillars abound, and I am now covered in brown tailed moth rash. This is irritating. And D cannot understand why I am unwilling to push him on his swing under their nests any more.

So that’s the downside. Meanwhile, the garden remains unaware of its toxic invaders, and remains as beautiful as ever.

Day 35

Today was not such a good day.

Started by blasting D’s bed with his breakfast, when syringe detached from extension tube. Such fun. Smoothie and weetabix all over his clean clothes, bedsheets, and precious beloved blankie.

Strip boy, change boy, strip bed, toss in the wash.

Caterpillar catastrophe compounded by someone helpfully chopping them down in daylight and leaving the nests untreated so all the poisonous wee beasties escaped into random corners of the garden.

Much squishing and stomping and squelching and squirting later, caterpillars won and I gave up and came inside.

So did they.

Cleanclothes. Hot wash on once more.

D spied his damp blanket hanging up and grabbed it, took it through to his bedroom, and had a poonami like no other.

Blanket back in wash, toothbrush sacrificed to clean the piedro boots and assorted bed toys binned.

On inspection, further poo turned out to be hiding on the trampoline.

Caterpillars still creeping everywhere.

Several showers, five loads of washing, a full Brown Ben, and a deeply thankful Tia. For bedtimes and new starts in the morning.

Day 34.

Trouble in paradise. What I’d dismissed as a mummified apple turned out to be rather wriggly this afternoon. And on closer expection, the tree proved to have at least five of these wriggly infested tents of caterpillars. Brown tailed moths apparently; the best thing to go with them is burn the eggs in winter. Being a bit late for that, I’m going to have to somehow chop them down overnight wearing protective gear. Fun.

A peacefully lazy day apart from that; a bit of pruning, a long nap for my boy on the trampoline, and a late night for my girl watching the One World concert.

No service from our church this week, so we went to visit a friend’s church online instead. Saved us the eleven hour round trip we usually take to visit them, which was nice. But right now I’d drive twice that for the privilege of being able to sit beside my friend and contain the boy in a row of chairs rather than letting him have free rein in the house whilst we follow the service on a screen.

One day.