FASD RIGHT NOW

I considered a post on what a typical day looks like through the lens of FASD, but then I thought, which day? While we have been gaining some consistency, FASD does, to a degree, affect each day differently. Though, that's the nature of a brain permanently altered from exposure to alcohol.

As it's a spectrum disorder, it affects each individual differently, so there's no clear cut 'A will happen at this point in time, and B will happen later. You can also expect X, Y, and Z.' I heard it said once, "If you're met one person with autism, you've met one person with autism." The same rings so absolutely true for fetal alcohol spectrum disorder.

That said, there are things that are very much the norm right now for my daughter at two-and-a-half years old. I thought I'd share those as an update as to what FASD looks like right now.

SPEECH THERAPY

My daughter's expressive language is delayed, though her receptive language is age-level, if not a little higher. A speech therapist comes to our house twice a month to work with her. In the past six months that she's been working with her therapist, she has made incredible strides. Her vocabulary is steadily increasing and I have never seen her as proud as she is when she says a new word.

Despite a speech delay, she has no problem letting us no what she needs and wants. Her non-verbal communication is incredible. She and her brother seem to have their own language that they spend hours conversing in.


SCHOOL

She will start preschool soon, through our state's Early Intervention program. My first thought is, how is she old enough already? My subsequent thoughts scatter from excitement for her- she loves socializing and making new friends- to a combination of dread and uncertainty. I trust that the teachers and administrators in her school are qualified and proficient in working with special needs, but the school to prison pipeline exists. The preschool to prison pipeline is in no way a stretch. My precious black daughter has a neurological disability that, in many ways, manifests as behavioral. I am terrified of what I am potentially sending her into.


CONCRETE PHRASES

Persons with FASD are often unable to interpret abstract concepts and expressions. Using concrete phrases is necessary. (Think Amelia Bedelia.) We are becoming incredibly vigilant in what we say. A few examples:


"Put this in the garbage can," instead of, "Throw this away." As you might guess, I first realized the way I asked this needed to be changed when she literally threw whatever it was I asked her to "throw away."

"You need to sit at the kitchen table to eat your food," instead of, "You can't take your bowl in the living room." When I said the latter, she scooped the spaghetti from her bowl with her hand, before leaving her bowl behind, following my instructions of leaving the bowl out of the living room.

"When you eat the food in your bowl, I will give you something else," instead of, "Your bowl needs to be empty before you can have this." I did make Jason give her the cinnamon roll he was offering to whoever finished their food, even though she emptied her bowl into the garbage can. In her mind, she was doing exactly what was asked of her; the onus is completely on us to make sure we are asking the right thing.

SAFETY

Safety is major right now. She does not make the connection between running into the road and the potential of being hurt. It's not that she isn't listening to us; her brain does not make the connection. She might later, but as for right now, it's a full time job. Scratch that- it's overtime.


SENSORY

She is sensory seeking- specifically, proprioceptive and tactile. We work to have activities and plans in place so that she safely gets the input she needs.

MELTDOWNS

For lack of a better word. These are heartbreaking. They don't happen as often as they used to, for which I'm grateful. When they do, they last anywhere from 5-30 minutes on average and are difficult to describe to anyone who hasn't witnessed one firsthand. She did throw a typical toddler tantrum earlier this week and I was secretly delighted that she was tantruming, yes, but in complete control of it.

SLEEP 

Sleep was a struggle for a solid year and a half. A 30 minute nap max during the day, and a couple hours sleep at night was not unusual for days on end. We are almost ready to start phasing out naps now, reluctantly (for me, she's happy about it), but overall, sleep is good now.


MEMORY

Occasionally, she will forget how to do something she knows how to do. Like, climb out of her carseat after I've unbuckled it. Luckily, these devastating moments are few and far between. I am amazed at the things she remembers, though, especially given that parts of her memory are almost certainly affected.

INTELLIGENCE AND OTHER DEVELOPMENT 

Having FASD does not mean below average intelligence by any means. She is incredibly smart and observant, always looking to learn. She is sensitive to the needs and emotions of others. Her fine and gross motor skills are above age level and, at a recent evaluation for Early Intervention, she was easily doing things that many five-year-olds aren't able to.



Typical manifestations of FASD at 2.5 years old


This girl is resilient. She is strong and brave, and works hard at everything she does. She is the most joyful person I know, and shows nothing but kindness and love to everyone she meets. She is captivating and so, so wonderful.

FASD is, indeed, a part of who she is; it presents very real challenges and demands action and adjustment, but it does not define her. She is a child that is learning and growing just like any other, with needs that most don't recognize she has unless they're pointed out.

This is something I share, not only because it's our life, but because people living with disabilities deserve to be seen for who they are, not a diagnosis they carry. But about that diagnosis? Recognize it, respect it, then make sure it doesn't get in the way of you getting to know the person it belongs to.

5 comments:

  1. Can you tell me how your daughter got an FASD diagnosis? Where we live (alberta,Canada), no one will do testing on kids under 7 �� I would like to have my 3 year olds tested even if it meant travel.

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    1. We knew from day one that she was exposed prenatally, so it was something that we anticipated. Our pediatrician referred us to a pediatric geneticist, and we've been on their wait list for about 18 months now (there's only 2 in our state). Meanwhile, we've been working with early intervention and different specialists in our area. Four more years is a long time to wait! Do they qualify for help through your school system, even without an official diagnosis? My heart goes out to you.

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    2. Oh! Have you read this? http://www.faslink.org/strategies_not_solutions.pdf

      I believe it's put out through Alberta Children's Services. There is contact info in it for physicians that might be able to help with diagnosis.

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    3. I have seen this! I spoke with the agency who does the diagnosing locally and also to the larger provincial hospital that does diagnosing here, they both said that they don't assess kids until 6 or 7 because of the lengthy process they have to focus for and the amount of questions they need to be able to answer 😕 But I'll keep looking/researching! Thank you!

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    4. They do qualify for help still and we are going to begin getting other assessments...when they were babies early intervention didn't notice any problems, they were doing so well developmentally, but now I'm noticing lots of sensory things for sure, so they're getting sensory processing assessments and we'll see where that takes us.

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