We love a child with #FASD

by @FASD_Mum

For nearly 10 years I have watched our son yearn to express himself, to find his words, to express his thoughts. I have seen him intently try with his entire being to make me understand what food he wanted, what game he was trying to play, what thing he tripped over, why the tight socks were not the ones he wanted to wear.   I have seen his despondence erupt into frustration and anger at himself, the world, us when he just couldn’t quite say what he wanted to say.  When he’d lost the thread.  I’ve watched hope sunset in his eyes, and despair take over as his thoughts moved on or his emotions took hold.

I have seen him as a toddler strapped into a speech therapist’s chair, yearning desperately for the bubbles she wouldn’t let him have until he made the ‘b’ sound.  Every ounce of his little body telling us, showing us, entreating us to let him have his hands on those bubbles. I have felt that Momma Bear in me roar, and I demanded they stop that game, give him the bubble, teach him some other way.

I know I am not always right, but I trust that instinct.  When I feel it welling inside of me, I do not ignore it.  That primal flood of protectiveness comes from somewhere as deep and old as our universe. It has power and truth, and whether or not this child’s first spark of life was inside my womb or another woman’s some life force, some bond connects us two.  If I say my child, who was once strapped into a chair after every meal in a Russian baby home until he did his business, if I say my child will not ever again be strapped into a chair to be forced to learn, I mean it.   Until this moment, I had not even realized why I reacted so strongly.  I had not made the connection.  I just knew it was not right for him.  Sometimes we don’t understand ourselves until later.  In this case, much later.

He’s eleven now.  Speech and language therapy has been the one constant support he has received from his earliest days with us, and with that one exception, it has been productive, useful, essential.  The little boy who did not make one voluntary sound at the time of his adoption at 16 months old is now speaking in full paragraphs.  He is using “-ings” and connecting words.  He knows what is on, in, and under something.  He knows what is bigger, biggest.  He can order the picture cards, so the kid first puts on her jacket, then goes outside, before she gets into the car and drives away.

And now, they say, he doesn’t need therapists anymore.  His school can take over.  Yes, he is behind his peers.  He does still at times reach for words, and needs prompting, but he did well on this one test.  They ask us what we think he needs more from them.  Because they don’t think he needs their direct help any more.

I want to say, he needs a future.  He needs words that he can use to find his place in this big, wide world. More words, better words, bigger words, more flexible words.  He needs consistent access to the information inside his brain.  He needs tools to help him cue himself when a thought falls away from his tongue.  He needs tips on how to remember what he hears, to find ways to say it back.  He needs not to be told that the job of helping his speech and language ends when he finally gets “-ing” words.  He needs not to be written off, just at the threshold of his next level of learning.

This therapist started by asking what we picture for him in the future, as if she had already decided the bare minimum was all we wanted.  We want him to access all his brain has stored, his knowledge, the hundreds of books he has read in his own way – not linearly, but connectively.  We want him to give voice to all his hopes and dreams.  We want him to be able to whisper sweet nothings to someone someday.  We want him to be able to communicate his wants and needs, rather than get tongue-tied and all bottled up and confused until his emotions explode forth.  I pleaded for them please to at least wait a few months and see him again, to perhaps pull out some other slightly harder test that I know they must have in their bag of tricks. To work with him further, to help identify other deficits he may now show, since he is finally speaking in full sentences and using “-ings”. To not let him go just as he is starting secondary school.  To not leave him at primary level and say that is good enough for their expectations of him.  To not have to ask us if we think this is good enough for where he is going in his life. They are good people, I know they want to help our son. But they, like most other professionals and educators we have met, do not understand FASD and the impact prenatal exposure to alcohol has had on our son’s brain.  Once again, we stopped being parents, became the teachers – our desires for our son’s future somehow is irretrievably intertwined with our ability to explain it, again and again. And again.

I had panic swirling inside me after we went home from that session. Then I found that a friend, who did not know what we were doing that day, had posted the video below on my Facebook feed.  And there it is.  I recognize this dad’s intense insistence to find his autistic daughter’s voice beyond the barriers.  The world will hear my son’s song, just as this amazing girl’s words are now coming forth, not one at a time, as her parents might have once only dared to hope, but at her own speed, in her own way, with deeply intense passion, feeling, perception.

Kids with FASD desperately seek to be understood.  With their entire being, they try so very hard just to say something, to get it right, to fit in, to show us what they mean.  Their frustration and anger is not because they are “bad” or “lazy” or “naughty”.  Their aggression and their lashing out happens in part as a defense because they don’t know how to be heard. As parents, we have to help them find their voices.  Patiently, persistently, every day, every week. Every person on this planet has a gift to share, has a desire to be heard and to be loved for who they are.  We must never give up on helping them share their voices with this world.  Don’t you ever give up on my child. I know what magnificence is still locked up inside him, and he needs more than “-ings” to let that free. His very soul sings.

Additional resources:

“Why is FASD diagnosis so important?” – Smart Speech Therapy, LLC.  Excerpt:

Children with alcohol related deficits ‘slip between the cracks’ when it comes to qualifying for and receiving services (Kjellmer & Olswang, 2012). —Public school professionals commonly report a lack of knowledge of FASD and how to appropriately plan for affected children (Koren, Fantus, & Nulman, 2010). As a result these children tend to be significantly underserved because their learning and behavioral difficulties are not always recognized and understood by educators (Watson & Westby, 2003). Due to the diffuse nature of deficits, these children lack a uniform linguistic profile.