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April 25, 2011

>Last week, a friend asked a question that resurrected memories of Hope as a toddler. Two kids with FASD are no more alike than any two  kids without FASD.  While friends recall their FASD-affected kids’ toddler years as being easier than early elementary school years, my experience with Hope has been the opposite. Our hardest years so far, with the exception of two months last fall that I’ll talk about in another post, were from the time she learned to crawl until about the middle of her fourth year.

Hope spent those three years being a  two year old. A young two year old:  that leading edge of  the “twos” when typical kids’ motor skills take off and parents hold their breath waiting for the child’s brain to catch up and begin putting brakes on their impulses. During those years, I was clueless. Now, given six years parenting her and our recent insight into her neurology, Hope’s behavior as a toddler makes so much sense.

In fact, just a few days ago, she explained herself to me.


Hope has begun occasionally chiding me, “But Mom. You didn’t tell me that.” Whether or not I remember telling her before is beside the point. She didn’t hear me. It didn’t register. It never made it into long-term memory. Whatever.

Yesterday, Hope was badgering her daddy for an answer to a question. She loves him and wanted him to answer, “Yes.” I knew she wasn’t deliberately being rude. Instead, she was acting like a child who didn’t know better.

So I said in my neutral voice, “Hope, it is good to ask Daddy’s opinion. But it is rude to ask over and over again. That is called ‘badgering’ and it is disrespectful. You need to stop repeating and listen for his answer.”

Hope stopped repeating the question and said to me, with hurt in her voice, “But Mom. You didn’t tell me that.” She meant: “I wouldn’t be rude to Daddy on purpose. I didn’t know I was being rude. Why have I never heard this before?”

It was a tiny epiphany for me. We’re a team now, Hope and I. She has come to rely on me to make up for her working memory deficits.She depends upon me to supply executive functioning for as long as it takes to move a rule from working memory into long-term memory. This can take a few years. (I’m on a quest to see if I can learn to facilitate it happening faster.)

But it does happen. Yesterday Hope came in from playing outside to get a jacket. She took off her shoes at the door, crossed the carpet in her stocking feet, put on her coat, walked back to the door, put on her shoes, and went back outside. Sometime in the past year, “Shoes off at the door” slipped into long-term memory.


When Hope was a toddler, she followed me everywhere like a puppy on an invisible leash. She could not stand to be separated from me even for a few  minutes. When I went away from her –say left her playing in the living room while I did dishes in the kitchen –I could count on maybe two minutes of peace before she provoked some trouble that demanded my presence again.

But now I think I get it. As a toddler, there had not yet been sufficient time for Hope to develop much long-term memory or to learn any self-regulation skills. She relied on me to make up for her memory and impulse deficits and was no more capable of acting appropriately apart from me than I would be capable of driving a car without my brain.

Hope and I were invisibly tethered like a lap top to an external hard-drive. During her toddler years, the cable between us was unnervingly short because so much of the information she needed ready access to lived on the hard drive: my brain.

I remember it was exhausting. It was a battle to not resent the constant demands on my attention. And I did resent it because I had no framework for considering it normal. We didn’t know Hope has an FASD and in the absence of any visible disability, assumed she was typical. We had not even read up on FASD “just in case” because we did not understand she was at risk.

In the toddler years, you may not be able to confirm that there is any deficit, not to mention that you don’t have enough experience yet to know your child’s unique threshold for for things like long-term memory and for learning self-soothing. But if you know your child has been exposed to alcohol, try out the theory that she, right now, may be incapable of doing this toddler thing without you.

The only way to get beyond this with your sanity intact is to engage: plug yourself into your toddler and be her brain. The other option is to disengage and incur the havoc wrecked by a toddler on the loose with no brain. Metaphorically speaking of course.

The intensity of these toddler years, the thousands of repetitions, redirections and reminders are an investment in your future. For many kids, at some point, some things will cross-over into long term memory. For the things that take longer, or may never cross at all, you’ll be developing supports and work-arounds.

Like this:  Hope just came to me from the other end of the house, bearing her Easter basket. She set it on my desk and asked me to keep it for her, explaining, “I know it isn’t snack time and if you are keeping it, then I won’t take any candy without asking.” That was her own idea. She knows herself well enough to not trust her impulse control, so chose to rely on a support (me) to prevent a problem.

Back in the thick of her toddler years, I never guessed Hope would not be Velcroed to me forever. That she would begin showing she could make sound decisions (sometimes). Obviously, she and I are learning to work as a team. But that is a good thing. Studies show that most kids with an FASD will need a support team into adulthood.

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