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I struggle out of sleep, not knowing what woke me up but for once knowing it’s not my own body. I lie still for a few moments, and then I hear a thud, and I’m instantly awake and throwing back the covers.

Justin’s OCD is back. He’s quite loudly rearranging his room at 6:10 in the morning, and there aren’t words to explain how much I don’t want his brother up at this hour.


That means I have to move fast. His rocking chair is next.

My eldest son has a dual diagnosis of autism and OCD. The only reason he really has a secondary diagnosis is due to the extreme level of perseveration he will sometimes go to, an intensity which transcends his primary diagnosis. Justin’s OCD has manifested in many diverse and interesting ways. Sometimes it’s rearranging furniture, which has at times improved the look of a room. During one particularly gruesome period he hid things, including shoes and my purse, which half the time I didn’t even know they were missing until I desperately needed them (at almost fifty I depend upon my visual cues). This last arc, which has lasted a year-and-a-half despite behavioral interventions and tinkering with his medications, was relieved for a few months when we seemed to hit the right one, and our happy boy came back.

And unfortunately, his penchant for angling and arranging has returned in half force.

The first piece of good news is that we have loads of room to increase his new medication, and since it’s been effective for the last few months I have hope that this change will help him. In case you’re thinking that moving a few things doesn’t sound so bad, I have to share with you that truly, it is. Justin not only wants to rearrange things, he wants to angle items in such a way as to defy gravity, and when he can’t transcend the laws of physics he becomes very upset and agitated, refusing to engage in more acceptable pursuits (or hell, sometimes even get on the bus).

And in those moments, I am pissed as hell at autism or OCD or whatever neurological disconnect is causing my boy so much pain.

The second piece of good news relates to me, or specifically how I am handling this unwelcome resurgence. Even a few years ago I would have despaired that we wouldn’t be able to help him, been sent to the abyss where he suffers and hell, frankly we all suffer along with him.

But over the last few years as I’ve seen problem after problem rectified with Justin, I’ve learned how to keep a little piece of hope alive.

Over the past thirteen years we’ve conquered potty training and insomnia. We’ve gotten him out of a hunger strike, and later on taught him to like lettuce (my greatest lifetime achievement) and reduced his caloric intake so he could lose a few of those carb pounds. We’ve (mostly) quelled his aggression, and worked out ways to stay at relatives’ houses and outing for more than forty-two consecutive minutes.

We’ve been quite busy chez McCafferty.

And what I’m able to do now that I wasn’t able to do a few years ago is draw upon those accomplishments and remember that many things are not permanent with Justin, that just like typically developing children he will grow out of some things (learning to sleep remains my personal favorite) and do it in his own sweet time.

This optimism doesn’t necessarily mean we’ll be able to conquer this latest challenge with our boy. Increasing the medication might not work, or the side effects of a higher dose might counteract the benefits.

As they say, it ain’t over til it’s over.

But something I’ve learned over the past decade plus with autism (and perhaps parenting in general) is that a good portion of the battle is my attitude. If I can summon up some modicum of optimism (and I will share with you all that this doesn’t happened in the middle of the night, I have my limits) I’m often more open to finding strategies to help my kids, and even if those strategies don’t end the issue, they can often alleviate it.

And frankly, being in a bad mood all the time just sucks. This is the happier option.

Know that I have my moments and everything I’ve just written gets thrown out the window on a day where I struggle to get my son out of his room so he can (thank you God!) go to school, go to the bathroom, or eat. In those moments I try to summon my “teacher patience” which is often more powerful than my “parent patience,” take a deep breath, and remind myself that he’s never completely refused to get on the bus despite whatever feng shui endeavor he’s attempting.

In other words, I’ve gotten really good over the years at deep breathing.

And my message for anyone just starting out with an autism diagnosis, or anyone at a particularly difficult juncture with the disorder, just remember this. No one can promise you it will get better. But the resources out there for helping our kids are so much better than they were even a decade ago that it’s worth a shot at carrying that hope with you for a while. And while you’re trying to help your kid, make sure you take care of yourself too.

I’ll say it again. Make sure you take care of yourself too. No one will do it for you. Try to recall what you’ve already conquered. Ask for help from anyone and everyone. Don’t give up.

And remember to breathe.

For more on my family visit my blog at autismmommytherapist.wordpress.com

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  • KaayC

    It never stops being a learning experience reading your articles! I believe as an adult, I have suffered to a more mild degree some of what you describe about your son.
    I just recently had an episode of rearranging wall art in a new home at 1:00 AM to the chagrin of my partner. I will say in my defense, my arrangement IS aesthetically superior to the prior which I did not arrange. I will concede to OCD, but as an adult sometimes feel others simply suffer from being aesthetically inferior. Forgive my dogmatism on that . : ) Do continue with your most sensitive parenting and awareness that maybe those on the spectrum are clued in where others are just not as sensitive. As trying as it may be, please observe. Are your son’s rearranging patterns more aesthetically or feng shui correct? Sometimes with me it is experimental. IDK myself until I rearrange and observe outcomes. Some people obviously dont care and I get it where in the middle of the night it is disturbing. I raised a colic and know from sleep deprivation. It as my colicy child who first informed me of my OCD. She is also a tad obsessive but rebels by being slovenly whenever visiting us. lol It is true. . I too suffer insomnia. Is your son sensitive to light as well? Caveat that I am very affected by flourescent and some LED lighting though not natural sunlight apart from being light complexioned and normal sunburn concerns. My experience in Spec. Ed raised my awareness on this. My students H.A.T.E.D those flourescent lights. I took my cues from their input – would bargain after we read we will cut the lights! My admin would question when on sunny days I would douse those lights, but after some discussion did not challenge me too badly as my kids were usually more calm and engaged when compared to many other classes. I worked with the classified severely behaviorally disordered. I used to say It takes one to know one! Hang in there and keep your articles coming. Please read up on flourescent lighting, the Westinghouse experiment even Rosacea ( if you havent already) Lighting can affect us physically even causing neurologic facial burn. Just now I am off a short non-eventful flight from Florida. The air pressure of flying outcome is what I can only describe as equivalent to a hangover, despite no time change apart from the standard Fall back. Some flights make my neural system feel like the Incredible Hulk. I do it because hours long drives can be worse. Idk sometimes if autistic are disabled or sensory superior on a certain level. You seem a great Mom! I love reading your articles. Your little one is beautiful. Never doubt his potential. Try to get rest! Keep plugging. Seek and find.