Swinging Blindfolded

Together time!
Leo has three feet; I'm doing my best Jabba impersonation.
Leo was a happy, gleeful boy when I picked him up from camp today, and greeted me with smiles and laughs and hugs that were 100% reciprocated. His aide said his week was full of fun and activities, and he came home with a glowing report and armfuls of crafts -- as is the right of all summer campers. We immediately headed off for his favorite Indian lunch spot, where he got to eat his favorite naan bread and let me load it up with piles of spiced saag (spinach). We came home and busied ourselves with laundry and unpacking, snacks and swing time, and pleasant stretches of dual geek time on the couch -- Leo with his iPad, me with my laptop, Leo with his head on my shoulder, me soaking up his affection and basking in our parallel togetherness.

I also spent much of the day in tears. With great, big, body-wracking sobs and conspicuous eyeglasses wearing while running errands. Leo is not in a good space right now, not at all. It's soul-destroying to see Leo flail and fail and not be able to help him. It's just not fair to our sweet, wonderful boy that his communication impairments prevent him from being able to tell us what's wrong, what he needs, how he feels, or how we can best support him.

Right now the biggest concern is self-care. The kind that involves elimination. I sent him to camp with two extra changes of clothing and a request that his aide watch him closely for the subtle signs that I've noticed precede  his current accident pattern -- and picked up a boy who despite his aide's best efforts needed his laundry done three times and ended up in fucking diapers. Leo didn't seem to mind, and I don't care in general about having a ten-year-old kid in pullups as some of Leo's best friends still use them; that's just reality. I do care, mightily, about what wearing diapers means for my son at this point -- it means lost skills. It means Leo's five years of hard work have seemingly evaporated. It means staying home, missing activities, and missing outings. It means an irritating mom hovering all day long every day. It is a huge regression.

I thought perhaps the frequency of the accidents was a reaction to being at camp. But, no. Despite careful monitoring  and frequent prompted pit stops, Leo had several incidents at home today plus one in the car while we were running errands which is something he has not done, literally, for years. The car incident is what turned me into a human waterfall of fear and worry -- because what if the problem's not behavioral? What if it's something else?

What happened at camp was an extreme version of what we've been seeing at home and at school for the past few weeks. Seymour and I were fairly certain the messy new regime was behavioral, and have been working very hard to support Leo on that front (oh the cheering and reinforcements for successful sessions!). But his OT at school is worried that Leo's experiencing actual incontinence. Which would have to mean sickness of some sort. Which means more guessing, as Leo can't really tell us his symptoms other than "tummy hurts, want a wipe." Which means more flailing, this time in a medical and diagnostic setting. I'll do it, if Leo needs it, but he's going to hate any kind of medical probing.

His behavioral tics are also completely over the top. They were getting bad before he went to camp -- but now Leo is near-incapacitated by them. He can't stop shifting from foot-to-foot or needing to spin or touch counters or walls or (aiigh) people -- it interferes with his ability to enter a car and get in his chair, or take a seat in a restaurant, or use the toilet, or not piss off unsuspecting bystanders.

I am hoping that all of this -- the erratic elimination, the tics and repetitive behaviors -- are a side effect of Zoloft. We put Leo on the drug about two months ago, on his behavioral psychiatrist's advice, to see if it could (irony) help with the escalating tics and repetitive behaviors. When a low Zoloft dose didn't work, we gradually upped it -- which made the tics proportionately worse. And it might be a coincidence, but that's when the self-care issues got so much worse, too. So, on his psychiatrist's advice, we're gradually weaning Leo off the Zoloft -- but so far have only seen more deterioration.

Meds are the final get-me-a-punching-bag unfairness dose -- even our incredibly experienced behavioral psychiatrist. Dr. R, can only make educated guesses about what might help our son. Dr. R was right about a very low dose of Risperdal helping to control Leo's violence, but before we tried Risperdal we tried Abilify for the same purpose -- and it made Leo's violent tendencies much, much worse. My son's needs are pronounced, incredibly obvious, and far from unique -- yet for now their treatment is a mystery to the psychiatric and pharmaceutical industry.

So when Leo has bad days, and there's nothing I can do except reassure him that I'm here and I'm with him, I spend a lot of time crying. Mostly in the front seat of the car, and as silently as possible so that Leo doesn't have the additional stress of worrying about me being upset -- he's sensitive to his family members' unsubtle emotions.
I hate this. I hate being unable to help my son when he's so obviously in need. I'm swinging my parenting bat as hard as I can, but I might as well be blindfolded -- plus it feels like no one can tell me where the ball is. All I know is that, no matter what, I'm on Leo's team. And I need to remind myself that this game usually has seasons. This one can't end soon enough -- Leo deserves to resume his winning streak.


  1. This post came at the right time. My son has been having an incredibly hard time lately, too, and I have to make a huge effort to remind myself to think about the fact that it has so much to do with his communication difficulties and the mysterious way he processes his world. I mean, logically I know this. But it's hard to remember when he wakes up at 4 am, or when he becomes violent. And the constant guessing--that's the worst. Is it because we're moving? Summer changes? Or, as in Leo's case, could it be that he is actually feeling sick? All I know is he seems officially depressed and I hate that I can't help. Anyway, as you say, these phases always pass, and in our case, once in a while they result in a developmental leap. Good luck over there!

  2. Hey Shan, after my recent week in Nicaragua, your analogy at the end brought to mind the craziness of being blindfolded, swinging at a pinata. There are times when you will hit it but not hard enough, and times when you'll miss it altogether because it has been pulled away, but one way or another, it is eventually going to get hit just right, and hard enough, and all the goodies will come pouring out. I will pray that your parenting hits are solid and sure and that you may see some of those "goodies" before too long...and that the next pinata does not get put up too quickly!! Buena suerte!!!

  3. I'm sure you know this, but the withdrawal symptoms from Zoloft can be pretty strong, so that could maybe be contributing to Leo's issues. The strongest effect can be feeling "spinny" -- it's sort of like being dizzy or being drunk for flashes. It's not a bad feeling, it's just really weird and kind of disorienting.

  4. Anonymous11:24 AM

    Squid -- I think your honest posts about Leelo contribute tremendously to the dialog about autism, hopefully to the benefit of Leelo and other children and adults with autism.

    I know many of the autism researchers you met at IMFAR and I know that over the last 10 years they have learned to recognize the human face of autism, beyond the intriguing scientific problem about the brain. That knowledge has contributed significantly to the quality and character of the research. But it's also just made researchers remember, when they use those words, like "comorbidity", that they're talking about a person, potentially a bright faced boy who likes to sing.

    It's a good thing you're doing. I hope that it will also bring you immediate help for Leelo, but even when it's swinging at a pinata, talking helps in ways you can't imagine.


  5. Lissi2:18 PM

    Oh, BIG BREATH. I'm sorry. Wish I had more than that to offer. Sweet, sweet boy. Hopefully the elimination of Zoloft will turn some of this around....soon. Thinking of you...


  6. flora6:30 PM

    We found that zoloft suppressed the urge to pee and a full bladder can impact on the bowel so there is some hope that what you are seeing is linked to the zoloft.

  7. Anonymous6:36 PM

    Hi, Shannon:

    You have lots of sympathy from me. We all have those days where we just feel helpless to help. We just have to keep on trying. And, it's hard because even the pros can't give answers. We have to figure it out for ourselves.

    One of my dearest friends just got her son "nearly" potty trained at 11, but I do feel the medications may have played a role in elongating that since his body had to get used to them. But, I'm not 100% sure. She still sends him out with diapers just in case.

    You just stick in there. It will happen. In God's speed. I'm praying for little Leo.

    Lord's Blessing...


  8. Shannon, I'm so sorry this has been such a painful, difficult time as you try to figure out how to help your sweet boy. We've been having some similar med-related issues here, mostly in terms of Nik just not being able to sense when he needs to go to the bathroom. His toilet training successes have been all but negated right now. We've also seen a HUGE regression in his communication abilities which has put me in pretty much the same sort of perpetually-tearful state you've described.

    I'm hopeful for both our boys that they will fare better once the specific meds have left their systems.

    Sending you so many good, loving thoughts and support.

    P.S. I know it's only a Wiki entry, but I thought this might be a useful starting point: http://en.wikipedia.org/wiki/SSRI_discontinuation_syndrome


  9. Kelly8:42 AM

    Thanks for writing this piece. I too spent yesterday in tears over my son's recent massive regression. We are also playing the guessing game, it's so frustrating and disheartening. I'm trying to regroup and renew, so your comment about being on his team really struck home.

  10. Anonymous12:50 PM

    So very, very sorry. I will tell you that when my son gets too high on his Luvox, accidents is our sign. Consistently. And, I remember weaning off of Zoloft myself...nasty business. I can't tell you for 100% it is medicine related but I would put good money on it. And clearly, this is probably not his new baseline. We are dealing with our own medication drama here, so I know how hard it is to just not know and feeling helpless. Better days ahead for all!

  11. Anonymous4:18 PM

    I have no ideas or suggestions, but couldn't not respond after reading your post. Hope things get better really soon!

  12. Thanks, folks -- especially for the information on Zoloft weaning side effects, and meds side effects in general. We've had two better though still not ship-shape days. But, again, Leo has remained cheerful throughout.

    I truly appreciate every last comment.

  13. We've had our share of regression. Hugs to you. I hope things get better soon.

  14. Thinking of you all, and sending lots of love and hope.

  15. tics and repetitive behaviors..sounds like P.A.N.D.A.S. - might wanna try a round of antibiotics... when we have strep or staph in the house (and we do - scalp infections, strep throat, etc) our guy's OCD gets much worse. We haven't found the perfect cure but z-paks seem to take the edge off. Also, Namenda has helped with cognitive functions - might help potty training. Sorry to introduce more meds.. I hate them and love them at the same time.


Respectful disagreement encouraged.