To Softer Landings
Posted on September 6, 2015
I am still yet to begin journaling, though the journal is sitting ready on my table, but last thing before I went to sleep last night I had to write something, somewhere, and so I opened the notes section on my phone and I typed ‘Today was hard.’
There have been some hard days, but none quite like this, which began with waking from the third consecutive night of about 3 and a half hours broken sleep, punctuated by Lady’s wide awake play periods of a couple of hours each in the very wee hours.
Boodi had a bad night too, along with his dad. Boodi needed extra doses of melatonin at 3 and then 4 AM, which is a first and was incredibly bad timing because he had his autism assessment yesterday morning. Boodi was diagnosed back in January by his paediatrician, but had not been assessed. An assessment is generally performed by a psychologist, and is a combination of several pieces of paperwork which a parent must fill in, ticking off in a black and white manner what things their child can and can not do across a varied range of tasks and skills. The day of the assessment the child is tested, observed and filmed completing or not completing a range of physical and social based tasks.
This process is one of those necessary wounds inflicted on autistic children and their parents (you can’t get inclusion support for school without one) . The end result is a list of your childs deficits, and though it is “useful” in determining where your child needs most help, it feels like another huge chink in our collective armour. Worse than that though, was that after Boodi’s bad night, two strangers walked into his space, moved his stuff around and then started mercilessly forcing him to engage with them and their set tasks for over two hours.
While I sat at a table with one (kind) stranger, my 3 year old began making sounds of non verbal distress that he hasn’t made in months. He kept coming to me, taking my hand and begging “Side?” (outside). I asked if he could do the assessment tasks on his trampoline outside, as his therapists often work with him there, to abate his stress and make him feel comfortable, but that couldn’t be accommodated on this day. I said that the little boy that they were seeing and assessing was not at all himself today. I continued on with the interview about social supports when my son was diagnosed, and my child kept making sounds of distress. All I wanted to do was run to him, curl him up with me under the doona and make these nice people go away.
It was harrowing.
At the end, Al and I had to sit on the couch while Boodi was tested. He ended up in tears when they would only let him have one sultana and one small cracker, as they tried to make him ask for more, in increments of one. Though he has no problem asking for more of something usually, this was too much for him. He didn’t understand why they were being so mean, (and that’s how it must have seemed to him) and when he cried, a chasm opened up inside of me.
After they left, Al went and bought hot chips for Boodi, and ice cream for me. I know that the written report that we will receive will open new holes in my heart, as my baby is found wanting again, as none of his beauty or the things that make him intrinsically, valuably, wonderfully him are quantified there in black in white. I wonder, is that how it will always be? The reports say one truth, though we know the flip side, the shimmery silver lining, but the big, wide world cares only about those reports?
My exhaustion swamped me, and everywhere that I looked on social media, I was haunted by the tiny form of another three year old, in merciless full colour. Yesterday was very hard.
Then, a text from an old, dear friend who doesn’t communicate via social media or email. It’s such a lovely little message, I nearly burst into tears of gratitude. Thanks Clay.
We are blessed. In the big wide context of the world right now, yesterday was for us, just a day, just a difficult day. In his song Anthem, Leonard Cohen sings about forgetting your perfect offering, about there being a crack in everything, that’s how the light gets in….. and so the light came streaming in again afterwards, today, with some sleep and some sunshine and children’s smiles, with Lady and I going along to meet Zanni Lousie and attend her book launch for Too Busy Sleeping, while Boodi ran gleefully in the grounds of the museum with Al; to finding a practical way to offer assistance to the refugees on the move in Europe by way of collecting baby carriers to send their way.
To hope, to softer landings. May you find them in your days too.