For those that are blessed to have a child on the spectrum, you will be fully aware of the roller coaster of highs and lows of life with an ASD child. Now add lockdown into the mix and your roller coaster has crashed to the bottom.
My son is six years old, he was diagnosed with Autism Spectrum Disorder when he was four with Autism Level 2. There are 3 levels; 1,2 and 3. Every child on the spectrum is so different, including the challenges and strengths that they have.
Over the course of the last two years my husband and I have worked very hard to make life more bearable for our son. We are very fortunate to have a fantastic team of health professionals, a very supportive school, and family that can give us a mental break from time to time. I know all too well that some families aren’t as lucky and my heart goes out to you, you are superhero’s!
Our entire support network vanishes.
Overnight my husband and I become my son’s teacher, carer and therapist, and it’s hard. Really hard.
No one can visit our house to provide a much needed break, and my son can’t attend school. School is so much more than just a school for us, it’s my respite. And what does this mean for our son? Our son’s only way of coping with the world is by having a meticulous routine. He thrives on everyday being the same, something my inner free spirit can find challenging. But not having that routine is a whole lot worse. When my son’s routine crumbles, so does he.
Every sight, sound, taste and touch can become unbearable for him. I remember during our first lockdown he ate nothing but toast for a whole week. Panic buyers and empty shelves meant I could only buy whatever shape pasta was left, a big no-no for my son. That may sound crazy to some, but for my son, it’s a very real problem which results in a very hungry and stressed little boy.
Cutlery on a plate, Textas being used, even the feel of material on his skin can cause a meltdown for him on a bad day. And all too often, he will retreat to his room and hide from the world.
It’s heartbreaking to see, but after a really bad day full of explosive meltdowns, your patience wears thin. I’m not ashamed to admit that there are days where I’ve just had enough.
Fortunately there are some really helpful resources online that can be really valuable.
Lockdown is hard, so the best thing we can do right now is look after one another. And don’t be hard on yourself if you’ve had a bad day, you’re only one human.