I wrote this in May when we had a not so great month here at school and home due to FASD and explosive behaviour.
Sometimes I day dream about where I could go if I just left. Maybe for the day, maybe longer. Sometimes I contemplate never returning. Yesterday was one of those days. I love my kids, my family, my husband. But some days the scale tips. This past May was a month of this.
When the Scale Tips – How it Feels Parenting a Child with FASD.
Do you ever have those days where the scale tips? Where how much I hate living with FASD (fetal alcohol spectrum disorder) seems to outweigh almost everything else. Days when you wake up to screaming and it doesn’t stop. These are at least half of my days spent parenting a child with FASD.
Support? What’s That?
When everything you say or do is met with belligerence, hostility, rage, rudeness, and anger and you can’t stop thinking about whether you have enough in a bank account to leave. You wonder why there is NO support or hot line and why it takes weeks to get in to the doctor to address this latest development.
Explosive rages occur out of the blue over nothing at all. Nothing. Someone moved something she left laying around. Or someone asked her to do her homework. Maybe somebody suggested it’s time for bed. None of these things warrant rages and yet she loses her cool entirely and we are all stuck in a loop of anger and rage.
This is so not what I imagined
I’ll say it. So here it is. This is not at all what we had in mind when we adopted our second child. It is not what we signed on for at all. It is exactly the kind of story you read in the news about parents giving up. Usually it is an international adoption story and someone sends their child back to Russia, or back to the Ukraine. Horrifically awful, right?
All the Questions
Why is there not a pill to stop or reverse brain damage? Why am I paying for what someone else did? Why did anyone think that drinking and doing drugs was okay after that pregnancy test registered positive?
All the swear words, the anger and the sad and you wish you could leave. But then you’d be letting the others sink. That’s not fair to them. You recall your first child asking over and over for a baby sister and welcoming her with open arms, hugs and cuddles, pushing her to the library in the stroller.
Just Behave,Won’t You?
So where do you go? What is there to do? Same thing over and over every day. How amazing that a paediatric psychiatrist asked a child with a brain injury whether she wanted to take medicine again for moods! How ridiculous that he listened to her and gave same child a warning to behave or we do need to go back on this medicine. Because that’s exactly how brain injury works, right?
If you don’t calm down we will have to put you back on the mood stabilizer. His assumption – that her chronological age is the same as her developmental stages. FALSE. It is not. While I wholeheartedly get it, because this is an invisible disability, and he has not seen beneath the iceberg, I also see that he has made a mistake. Today she might be 15 here in this office and then at home later she will be 6, or 12, or 8. Or maybe all of the above inside the span of 24 hours.
Invisible Disabilities are a Bit Like Icebergs
The mostly invisible brain injury that is FASD exists largely beneath the surface. Dysmaturity, a classic sign of FASD described by leading FASD researchers – Clarren, Malbin and Streissguth – is the piece of the iceberg that’s submerged most of the time. Hostility sometimes breaks the surface.
Behave, Calm Down
Telling someone to BEHAVE when they have a brain based disability and executive functioning challenges is ABSURD. In fact, it is as ineffective as telling someone with anxiety disorder to CALM down during a panic attack. IF THEY COULD, THEY WOULD. Oh, I know we’ve ALL done it here too. Extremely hard to remember this when we, as parents, and caregivers, are rundown and existing on empty.
Everyone who has ever been responsible for parenting a child with FASD has made mistakes. Some days courage and parenting a child with FASD are two parts of a sentence that make ZERO sense.
Nobody chooses panic attacks and no child chooses to get in trouble on purpose.
Most kids will almost always choose to fit, to belong, and to not draw all the attention to themselves. Instead often you have to show, not tell. Show them how to calm down over and over again. Model how to regulate over and over again. Believe me when I say I get how exhausting this is.
Regulation and Parenting a Child with FASD
We sit side by side or nearer kids when they are doing homework, or studying often. Trying to regulate ourselves first and communicate that partly just by being side by side doing essentially Time in. Basically, it’s the opposite of the old time out that was sometimes used to effectively correct some behaviours as toddlers and preschoolers. Whereas time out worked for my older girl, it never worked for my girl with FASD. We learned instead time in.
Change all the Things
Sometimes I can’t stop fixating on all the things we have done, or put in place here. Change the environment, not the child. Done. We moved to a home a better neighbourhood to surround our kids with positive role models as peers. Bought a house with a pool for the physical activity and sensory needs. Changed a career dramatically to be able to respond when breakdowns happen at school and on and on.
It is dead exhausting. Today, my brain and nerves are all raw. Capital R Raw. It’s nice how people sometimes talk about taking care not to burn out. But systems break down, supports are cut or never existed to begin with and then it’s all on family again. Burnout is waking raw, waiting for the explosion, or the knock on the door asking to explain all the screaming.
Trying Not to Quit
Today is one of those days where the one with FASD escalated over nothing. And I am actively trying not to quit parenting a child with FASD. Or life with special needs on board. Or even life.
Coping and Parenting a Child with FASD
I am saying it out loud here instead of doing it. So here’s what I will do instead. Feel all of it, write it down, go to bed and start again another day. And in the middle of the summer when it is just you and her, or just you and him and you look at each other and burst into spontaneous laughter just remember it didn’t break you.