autism · Down syndrome · Uncategorized

Our Own Drummer 

You know time crawls on when you’re waiting for your song to start so dance alone to the beat of your heart.

~Fall Out Boy, Phoenix

Autism spectrum disorders are known to occur in individuals with Down, and statistics show that ASD is more common in Down syndrome than the general population. It’s hard to nail down, but a reasonable estimate, per the NDSS, of the incidence is 5-7% of the Down syndrome population having co-occurring ASD.  I would estimate that number to be on the low side.

Of those people with co-occurring disorders there’s a pretty clear description of the common presentation, which includes, but isn’t limited to; frequent stimming, little interest in social interaction, and often the individual is nonverbal.

Suffice it to say, after reading about Down syndrome and ASD, I didn’t have any indication that Ben had autism in addition to Down syndrome. In fact, you could have knocked me out with a feather when we got his diagnosis.  I got the book, “When Down Syndrome and Autism Intersect“, which further confused the matter by describing the standard presentation of DS/ASD, which was nothing like Ben.

Ben with his cars

 

It took me quite awhile to wrap my mind around the ASD diagnosis. In fact, it was at last year’s local Down Syndrome Association picnic that the reality hit home like a sledge hammer. Ben was disregulated and riding the meltdown train the whole time, and the difference between him and the rest of the people with Down syndrome at the gathering could not have been more obvious.

Ben is very social, in fact excessively so. What he lacks is reciprocity.  He’s far more characteristic of what used to be considered a PDD-NOS diagnosis.

Alas, Ben is an island. He doesn’t fit in the general Down syndrome community, nor does he fit in the DS/ASD community.

I certainly don’t know what it’s like parenting other children with co-occurring Down syndrome and ASD, but I do know that it’s awfully lonely parenting our little man. The resources are not designed for us, they don’t address our challenges.  Ben is who he is, and I love him in all of his quirky individuality, but man would I love to find a kiddo with a similar presentation. I could just imagine sitting down to coffee with his or her parents and comparing stories, watching their eyes light up as we all realize what we have in common.  We bypass the standard Down syndrome, ASD, and DS-ASD resources, because none of them address our situation.

For now we do alright on our own. Ben has his own drummer, and he sure is cute marching to the beat on his own.

Uncategorized

Sleepless Parents of the World, Unite!

 Dear Sleep Deprived Parent, 

Let me start off by giving you a high five of solidarity. (It’s okay if you miss, I don’t expect your A game when you’re living a protracted sleep hangover). 

I see you there, hiding behind your mega-super-grande coffee and professional grade dark circle concealer. You have received unsolicited advice about sleep from everyone from your old school Aunt Mable (thanks but no thanks Aunt Mable, I’ll pass on that nip of whiskey) to your single childless friend who has all the answers and knows just the right essential oil to send your precious little one to dreamland.  

You’ve tried letting him cry it out, and cried the whole time yourself, you have queried the pediatrician, tried diet changes, and overdosed on those bath products guaranteed to send your child into a transcendent and blissful night’s rest, and diffused every oil from lavender to chamomile and back to vanilla. Yet your sweet child continues to defy conventional and unconventional wisdom as well as every off the wall homeopathic remedy the internet has to offer. You have moved heaven and earth to get the sandman to visit your child, and end up with him crashed out from complete, sleep-deprived exhaustion in the middle of the day like exhibit A. 

  

He acts like his bed is a torture device, but can fall asleep mid-day in any place or position

Please, dear friend, take heart. Your child’s ability to sleep (or lack there of) is in no way indicative of your parenting skills. (If anything you have reached super-Jedi-ninja level, but your kid just levels up just ahead of you, which pretty much means she’s a rocket scientist).   If anything, you have shown adaptability, persistence and heart. Let’s stand together as survivors and hold our heads high! (when we aren’t dozing off while standing). You’re going through life in a state of abject exhaustion, and somehow manage to hold it together when weeks of sleep deprivation melt into months and even years. Your superpower is keeping your eyes open during meetings and keeping your coffee intact perfectly balanced between dozing off and vibrating. Just remember, this too shall pass, it might just take a decade or two. 

Sincerely, 

The Mom who’s 10 years into this nightmare. 
P.S.  If you’re secretly cursing that mom who is bragging about her child sleeping 12 hours at a stretch and taking a 3 hour nap I am so with you!