Archive: Advocacy and Mother's Intuition 2018

When Lucas was about 4 months old, my gut told me that he was going to be "more".  He had the strongest gag reflex I'd ever seen, did strange things like tensing up his body and standing on his head in the crib, etc.  My combination of mother's intuition and experience as an SLP told me that this child was likely on the autism spectrum.  It took me over four years to find someone who supported that feeling.  This child is not like other children.  He's this beautiful, smart, strange swiss-cheese mixture.  He could read at 2, but still doesn't know what a cat says.  He didn't babble.  I had to teach him to point.  He passed the autism screenings at checkups.  His pediatrician said "noooo...look how social he is?"  This is true...he is very social.  He makes eye contact (in fact, if you aren't looking, he will turn your head to make sure you're paying attention).  He's funny, he's giggly, he's a handful of joy.  He is also constantly sensory seeking, doesn't sleep through the night, is echolalic (repeats what is said to him verbally), uses scripting (says memorized passages from books and movies out loud during the day out of context), and though he has a strong desire to be social...he doesn't understand how to socialize like other children.  I referred him for early intervention services myself at 9 months old, after finding that his physicians would not provide any referrals.  By that point, he had significant torticollis due to reflux (he was holding his head on his shoulder to prevent acid from coming up his throat), was no longer on the growth chart, but his speech and language skills were still within normal limits. Thankfully, the early intervention team listened to me and he was placed into the program.  Within a year, he qualified for OT, PT, and speech therapy due to significant delays globally.  I am so thankful that I found someone to listen to my concerns.  As he's gotten older, his diagnosis has become more and more apparent.  He likely has autism.  He is also thriving.  Though he's small, he will tolerate more foods than he used to, is speaking in sentences, has a great sense of humor, is learning to use the toilet, and is happy most of the time.  The moral of this story is: professionals need to listen to parents, make referrals even if you aren't sure- what does it hurt?, and give parents support regardless of opinion.  Where would this child be today if he hadn't received early intervention?  If I hadn't pushed and pushed, would anyone have provided him the therapy he's needed to learn to speak or the sensory integration he's needed to feel happy?  Would he have had enough nutrition to still be alive?  Would he have been run over because he didn't learn the significance of the word "Stop!"?  Also, I've learned that autism is not the "monster" I feared when my first son was born (that was my biggest nightmare....).  Many children with this diagnosis grow up to be successful, independent adults...and if they aren't independent, most of them ARE happy...and that is what life is all about.  Here is to the kids who look at the world sideways, upside down, and inside out...and to the therapists, doctors, and families who support them along the way.  After all, autism isn't a problem for those on the spectrum...it's a "disorder" for the rest of us.  Some wonderful ways to support families with children who have special needs (or any family, for that matter): listen, acknowledge, include them (we know this is hard sometimes, but we are beyond thankful for the friends who have stuck it out), provide respite (give the parents time away to rest, recover, shop, pee alone, run, provide self-care, etc), babysit (nearly twice as many couples with children with special needs divorce...because this is really, really HARD), support adoptive families financially and emotionally (where would kids stuck in the system be without adoptive families???), and most importantly...please love us and accept us as you'd like to be loved and accepted.






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