Diary of a deaf mom and 10-year old with neurodevelopmental delay and sensory needs

Day 9 of #TheGreatBigLockdown #Coronavirus #FASD

Today was the third day in a row the 10-year old followed me constantly around the house. He wanted to know what I was doing even though he could see what I was doing. He wanted to know instantly if I shuffled my seating position on the sofa, where I was going.

If I left the room he followed asking me if I was going to the toilet, every single time.

I understand a decent amount why he’s acting super clingy and unsure, I understand in these strange unstructured times that his brain is losing sense of where he is in the present, that he’s regressing to repetitive actions hoping he’ll get an answer that makes sense to him, a lot of his questions don’t have an answer. He’s in a Catch 22 situation.

Because I understand this, I have adjusted my responses, my actions and my patience accordingly. I am his rock, his anchor, his trust that he will be ok.

But it is now day NINE……..

I shouted this morning.  

I felt bad afterwards.

It didn’t sort anything out.

Then this afternoon I flipped my lid, steam came out my ears and I got very cross with frustration when he continued to not follow the instructions i was giving him, the ones he asked me to give him.

He knew at that exact moment I was definitely not happy, he burst into tears and ran and hid upstairs.

I kicked an empty cardboard box as hard as I could into the backyard, slammed the back door and threw drum sticks (not the chicken kind) across the living room like a teenager who had been told the dial up modem wasn’t working anymore in 1994.

I didn’t stop there. As I was alone in the kitchen (in 9 days this was actually a luxury) i started on the stacks of washing up with teary eyes.

After a couple of minutes I could hear the start of shouts from upstairs, the upstairs landing cctv showed me he was sat at the top of the stairs picking his nose and shouting, “Mummy, Mummy, Mummy…. Mummy….”

I was not ready yet for more confrontation. What I did next was wrong on so many levels but right in so many ways.

I spoke to Google.

I did.

“Hey Google.” She listens to me.

There are Google display speakers in the kitchen and my bedroom, and three Google speakers in living room, office, and his bedroom.

“Play Rod Stewart’s ‘I Don’t Wanna Talk About It’ on ALL speakers”

The whole house boomed of this song, how apt. And I carried on washing up. Two minutes later the pizza delivery arrived, him and I regrouped to eat, he was calm, I was calm, all was good.

I am not alone, there are many many families out there living very similar lives. The patience, the tolerance, the love, the thinking outside the box and the juggling of everybody’s peace of mind is a way of life. In these strange times where we’re isolated the emotions are amplified.

Which means the laughter is amplified too, and that makes it all worthwhile.


We thank this mum for sharing her honest and powerful story. NOFAS-UK stands with all those families affected by FASD who are faced with additional challenges and considerations in these days of uncertainty. You are not alone. Stay safe and well. We encourage individuals with FASD and families to reach out for support.

If you are in the UK, online support is available via the FASD UK Facebook group, which is jointly administered by leaders of FASD UK Alliance groups. NOFAS-UK is a member of the FASD UK Alliance. You can also send an email to help@nofas-uk.org.

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Note: This music video is available on YouTube here: https://youtu.be/MjxL3U2mCyg. It is licensed to YouTube by WMG (on behalf of Warner Records Label). The embed option was provided by those who posted this to YouTube.