Self Isolation as a Special Needs family is, I feel, quite different to self isolation in a neurotypical household. I’ve got both types of children so I can see first hand what the differences are. My two neurotypicals get stroppy and fed up being cooped up but the little things we can do like watch films (thank god for Ollie buying Disney+ last week) or going for our one family dog walk a day to get away from the four walls, are only really possible for Bella and Jago to take part in and actually enjoy. They are occupied with school distance learning tasks and can engage in play and activities without the guidance of an adult. Overall they are pretty happy. My girl child is even happier now that she is allowed to use my phone to FaceTime her bestie.
Worry and Apprehension About the Lack of Routine.
I had been incredibly worried and apprehensive about how Freddie would handle suddenly not going to school, even with the social stories his fabulous school gave us and read with the children in the last week. The first five days or so went ok. We tried to put some routine into the days, PE with Joe Wicks (my legs were killing the first three days, thanks Joe) but of course, Freddie doesn’t have the physical ability to do any of the exercises but he can find it on Youtube and set it up for us. Tech whiz. If, like Freddie, your kiddo can’t do this physical activity you could try this alternative, search on Facebook @bumblebeephysio for Bumble Bee Physio and they are running live sessions called PE with Hannah, Joe Wicks Adapted for Differently Abled Superhero’s.
On our daily exercise, he found the walking a real challenge because we’ve been trying to stay off road, closer to the sheep and horses and away from the humans. His balance is poor, he stumbles, his perception of depth is off so the uneven ground of the fields is actually quite torturous for him. We took our time, we took a ball for distraction and gave loads of cuddles and reassurance along the way. We didn’t go too far because he tires so easily and it went OK. If you’re a parent of a child with special needs and disabilities you will know what I mean by OK.
By Saturday, the lack of routine, me constantly replying no to the question “school day tomorrow?” and our lack of ability to stimulate him the way his brilliant teachers do, made for a day of high anxiety for Freddie. Many of you will understand that this can show itself as big behaviour. No matter how hard you try to remember that all behaviour is communication, it’s really bloody tricky to remain totally calm, fully engaged and understanding. Your one time out of the house, totally obliterated, mainly because it was windy.
The Plus Points
Every child and every adult is finding this situation difficult to truly comprehend. What do you mean we have to self isolate and you can’t tell us how long we’ll be doing it for? It’s even harder for those in our community who are shielding for 12 weeks. Overall, it’s torture for our kiddos with SEN. Freddie has the concentration of a gnat so trying to help our other two with their school work and not being able to be 1:1 engaging Freddie all day, makes it very hard for him. There is a lot of repetition and he has absolutely no concept of time. This makes the days quite tiring and long for him. We have been outside in our garden, which I know we’re very lucky to have, to play basket ball and chalking the patio etc as much as we possibly can.
Our New Normal
This new normal has many plus points, which I try to remind myself of daily. More time with the children. Devoted time where we’re not running between, work, after school clubs, umpteen meetings and appointments for Freddie and the odd fun social (adult only) outing. Boo. Oh how I miss that. It’s got quality time written all over it. The big difference for us, like many special needs families, is that it comes with many many more challenges. To those Mums and Dads lone parenting, especially if you’re shielding, massive, big sombrero hats off to you. If you’re a family which deals with the challenges of VCB, I salute you.
One of my live workshops is all about building your emotional resilience. Majority of what we do when we build that up is based on a different normal. Our new normal requires some very creative thinking for how we are all going to have some head space. That’s for us and our children. make sure you talk to others, either by message, live chat or by phone. Stay in touch as much as you can. Find ways to get space. Walk alone if you can, a bath once they are in bed, reading trashy books, not obsessively scrolling through the news and reading frightening stuff about Coronavirus. Humour as often as possible. It’s not going to be enough but something is better than nothing. Don’t do what I did and wait nine days before you do something for you. I was almost broken by Saturday.
Isolation In The SEN Community
I don’t want all the families in our community to be totally broken by the end of this. I know it’s incredibly tough where care and support have been removed, the lack of routine, lack of a break, job losses and reduced income are at play. ISOLATION. I regularly see posts from people saying they are going to use this time of isolation to better themselves. Ideas are to paint the house, read five books a week, learn a language, learn to play a musical instrument or write their memoirs. Oh how I laugh. It’s great in theory and I’d love to say that was me. However, I have three children, one with special needs and disabilities and most days I’m lucky to have had a shower by 4pm and remember if I’ve cleaned my teeth or not.
When you can’t really even get your SEN child out for your one allocated fresh air outing, it highlights further the isolation special needs families face. Isolation, even when you’re not self isolating.
I’ve sat writing this with Freddie next to me on his iPad. He’s been asking me over and over again if it’s bed time, what are we having for dinner, is it school tomorrow and can I play jingle bells again? Noooooooooooooooooo. We’re still being subjected to the first 10 seconds of a variety of Christmas songs, Shotgun and ants on your arm.
Our Family Win From Week One
A big plus though is that Freddie’s little bro asked to have a ‘sleepover’ in Freddie’s room last night. I wasn’t sure how it was going to go but Jago shared his superhero toys with him and gave him one of his many beloved soft monkey toys to sleep with. In the morning they got up together and we could hear them laughing and chatting in bed. Bella commented today that the boys seemed closer, which they do.