Back to school for parents of kids and young adults with complex disabilities is an especially difficult time… it’s a reminder of all the milestones missed, it’s stacks of paperwork and countless phone calls trying to get bussing and therapies in place, it’s packing bags of medical and non-medical supplies for school to have on hand, it’s worrying if the teacher will actually believe my kid is smart and worthy of learning, it’s wondering if she’ll be safe and cared for and respected. And it’s trying to snap the requisite cute back to school photo… all while trying to balance the other everyday things that all ‘typical’ parents have to manage.
Thankfully Lily’s first day back was a success and I’m cautiously optimistic that she’ll have a great school year. C’mon 8th grade – be good to my kid.
Ah bella Italia – the sweetness of doing nothing (translation of aforementioned title).
There’s an approach to life in Italy that is – in my opinion – worth emulating.
Life moves slower.
People are kinder.
Food tastes better.
The old, the different is appreciated, revered even.
The list goes on.
Though I’ve technically been wearing rose-tinted sunglasses on this trip, I know this country is far from perfect. But there’s something new I’ve noticed about this country to add to the above love list: the Italians are so very accommodating and welcoming to people with different abilities.
I casually picked up on it last summer when I was traveling here solo. I saw many Italian families walking around with their differently abled children – out in the open, taking up space, living their lives.
Being with Lily here this summer brought this to light. She walks into a place and is welcomed with open arms – and even a few kisses. Sometimes it’s a little over the top but what it says to her, to us, is that ‘you are welcome and you matter.’
Other than the occasional tourist (usually American* or British), we aren’t getting stared at or paid any more attention to than anyone else. It is so refreshing.
It’s been a beautiful, often difficult vacation. Traveling with a family member who has disabilities is hard. But she’s been doing mostly great and we’ve been able to make wonderful memories – staying in a magnificent villa in Tuscany and traveling through that magical region with my brother, sister and their families. Then we parted ways and headed north to the lakes region for a few days.
Below are just a few highlights from our adventures. If you want to see more photos, let me know. I’d be happy to oblige!!!
*I yelled at an American family in Volterra the other day to ‘stop staring’. Lily wasn’t being disruptive, just doing her Lily thing. People can be assholes. Don’t be one of them.
Yesterday Lily came home and was a bit cranky. So Urszula heated up the leftovers from lunch and they sat in front of the Tobii, chatting while she ate.
Lily immediately went to the baking section and rattled off the following things:
Baking powder
Sugar
Lemons
Cocoa powder
Mixing bowl
Baking dish
Vanilla extract
Butter
Salt
And every time she mentioned one of these words, I grabbed the item from the kitchen and put it in front of her. It made her so happy and giggly.
By the time Elaine (Lily’s speech therapist and good friend) arrived, we had a table full of baking stuff so the two of them worked on finding a recipe that fit the above ingredients. And the entire session was about measuring and mixing ingredients – part math, part science. Lily quickly got frustrated with the process as she wanted chocolate lemon cake immediately.
So Elaine and I finished up. I popped the cake in the oven and once it cooled, Lily was so excited to FINALLY eat a piece. It was delicious!!
Unfortunately for Elaine, she had already left by the time the cake was ready and I’m not sure there will be any left for when she comes back on Tuesday. 😆
This is not your typical beginning of the school year update. I don’t have time for nostalgia as we’re playing a thankless game of whack-a-mole and the stakes are terribly high. Where to begin….
Lily started having seizures at the end of May. We’ve been working with her neurologist to find the right medication but it’s a long process of trial and error. Seizures are scary. And they’ve been happening daily. This sucks.
Also, and likely related, she’s been getting easily overwhelmed. It started with sneezing and coughing – she’d break down crying whenever someone made an unfavorable noise in front of her (which curtailed our already limited social engagements) but now she’s been having full blown meltdowns. Daily. Usually in the afternoons. And for no known reason. This sucks too.
And as if those things weren’t enough, the latest result from the orthopedic surgeon show that not only has Lily’s scoliosis progressed, but now one of her legs is growing at a different pace. What. The. Suck.
The Hope? Well the Hope (not sure why my autocorrect keeps capitalizing this word but I like it) is that maybe going back into a familiar routine will help us all move into a new normal with less pain, less screaming, more peace.
And throughout all the hell this child deals with because of Rett syndrome, she still continues to have moments of calm and joy and positivity.
Thankfully, for her first day of 6th grade, she had a good day.
Yesterday Lily didn’t have any therapies after school and Urszula had the day off. AND the weather was nice. A rare opportunity presented itself to me: taking my girl on an outing with no real agenda.
We walked up Columbus Ave to window shop, popping in and out of stores she wanted to explore. Once we hit 72nd, we went east to Central Park—Strawberry Field to be specific—where we listened to Beatles cover bands for a while.
Right now we are all a bit Beatles crazy in the house. So I’m not surprised my subconscious brought us to Strawberry Field. While there, Lily confided to me that Paul is also her favorite. (Sorry Auntie Angela – I was with you for a long time about John but after watching the Beatles documentary, I’m all about Paul!)
From there we walked through the park down to 67th. And then stopped off at a bookstore as I’m trying to find a book or two of poetry for her as I think she’d really enjoy it. We didn’t find a book but she loved exploring all the different sections, especially the photography books.
From there, we made our way back home.
It was quite the adventure and Lily didn’t tire at all – though I did a few times and so we would sit and people watch. She was smiling and happy throughout. And so was I.
blueberriesandgiggles 