Parenting is an extreme sport….

Things are pretty good right now with our Macaroon, who is approaching his seventh birthday. He’s finally potty-trained, is becoming more and more self-sufficient, and his verbal skills are expanding (finally as well!!!). Most moms and dads with kids on the spectrum long for having a household that is at peace with itself. Ours was hard-won, but as I’ve told some people, I was doing things that were helping my Macaroon, before we had a diagnosis, things I didn’t even know would play out the way they have. And never would have dreamt of, while cleaning gallons of milk and juice from our couch, rugs, and his bed, or watching him toss everything he could off our second-storey deck.

Our son is probably the only kid, as far into the spectrum as he is, that I’ve met who doesn’t sleep with meds, or wander the house all night. You may find this a little hard to believe, but he goes to bed between 7:30 to 8:00pm, and sleeps all night, until 6am, most days. He has an occasional morning of waking earlier, but as long as we get him to potty right up until the moment head hits pillow, he’s pretty good about that 6am mark.
Honestly, it just started off with me feeling pretty adamant that I wanted that “apres-child” time. I realized when he was first able to stand on his own, hang onto the crib rails, and bounce his ever-lovin’ brains out for hours, that I was going to have to figure something out. It took about a year of on-again/off-again interventions (that I didn’t know were interventions) to get him where he is now. It started off as just massage, which most babies like anyway, but he quickly began letting me know where he needed it. The best spots that I found were: gentle rubbing between the eyes, tapping/drumming fingers across the forehead and sinus areas, and scalp pressure. He also loves having his thighs, calves, and feet getting the deep pressure, as well as when I roll his fingers gently between mine. The first and last that I have mentioned go back to articles I read long ago about relaxation points. The rest are spots that he has shown me through the years, through that nightly ritual of helping him get to sleep.
Our environment was also important. We have low lighting for evening; leaving on enough lights to see what we’re doing, but we turn off everything else. We close the curtains, get beds and rooms ready, and do other little cues that it’s getting close to bedtime. We start that anywhere from 6:30 to 7pm, usually about an hour away from our target time. We end any active play, or other high stim activities, and usually cluster together in one place.
Last night, I let them watch Cars for a while on the couch, but “tricked” the kids into sleeping by bringing out favorite blankies and their pillows. Macaroon was passed out by 7:30. And honestly, now that he’s verbal, he lets us know on many nights that he wants his bed or to go “ni-night”.
It was not an easy place to get to, and I did set aside my desire to do things on many nights, because I had this gut feeling that, if I laid the groundwork, he would fall into the ritual. I think that it’s probably easier for younger kids, but it’s entirely possible that it may work for older ones as well. Our bedtime rituals are not set in stone, but we have no trouble going away from home, camping, or staying in hotels. He sleeps anywhere.

That’s one example of an end-result that looks pretty clear cut and simple to an observer. Some neighbors and friends of ours have trouble with their typical toddler; he is just in a pattern of not wanting to go to bed easily. By now, he knows he’s got his parents over a barrel, and he’s not giving up that power. His mom was over one evening about a year ago, and watched in disbelief as both of our kids announced their desire to go to bed. And go they did, without a fuss, and slept through us chatting and laughing in the next room (we have a small living area). Neither one got up until the next morning. She was jealous, by her own admission, and it’s hard for me to express what we did with our kids, without sounding like a know-it-all. Worse, because it looks so easy now, people think we’ve had it easy the whole time. No way.

Two years ago at this time, Macaroon was waking in the middle of the night, for reasons I have never fully understood. My best guess is that his paraprofessional was suddenly reassigned, and all the paras went on a rotation schedule. Macaroon was coming awake, and just screaming this primal, grief-imbued, gut-wrenching scream. I was terrified that things were coming to a halt. And he was nearly impossible to comfort. I had no idea what to do, other than to get in bed with him, and try to see him through it. And then it stopped. He has also had so many times of wetting the bed that I could not even venture a guess. I’ve had to change sheets twice in a night. Now, he gets up and goes on his own, but then, he’d sooner stay there and lie in a wet mess than get up. I don’t know for sure, but I think it’s because we have a pretty good light source near the bathroom, leave the seat & cover up, and started just directing him verbally to go, rather than racing down to get him out of bed. We can now finally sleep in a little on the weekends, knowing that he’s going to take care of that on his own. And then turn on the computer, and every t.v. we have, and leave the fridge open, and maybe try to make himself some food or drink. Yikes. We only sleep in until 7 anyway.

It’s navel-gazing, really it is, however necessary the reflection is. We have spent so much time trying to disentangle the mysteries of our older son. Not that the younger has been much easier; he was colicky for ages, has raging, uncontrollable tantrums, never wants to eat, has sleep hysterias, refuses to potty-train, and is the most stubborn person I have ever known (aside from a few relatives). He’s also sweet, has an eidetic memory, loves heavy metal, and is extremely polite when he knows it matters.

We exhaust much of our mental energies on our kids, no matter who we are. It’s just that not all of us find ourselves in a vacuum, completely cut off from the rest of humanity. For us, it’s been a measure of self-isolation. My husband prefers to be around few people, excepting the friends we have nearby. I would definitely prefer to be around more people, but have lost a lot of confidence and social skills since going into isolation. I find myself babbling wildly to my mother when we get together, because it’s my only other adult conversation in a day, besides my husband (and I think that’s typical for at-home parents). I also find myself feeling terrified of phoning people, or of taking any kind of social risk, unless it’s with folks I know very well.

Many of us parenting on the spectrum have read that little ditty that alludes autism to thinking that one is fully prepared for taking a trip to Italy, and then find ourselves in Amsterdam instead. You know, throw away your guidebooks, your Italian/English phrasebook, and what the hell is Dutch cuisine like anyway? Sure, autism can be like that. I think it’s like that even with our younger son. I surely didn’t expect a c-section with an 11lb baby, nor his insanity-provoking colic. We manage, the way that we manage in war, because humans are so utterly malleable in our behaviors. Where dogs and cats still operate on quite a lot of primitive instinct, humans can overcome instinct with very little training. I mean, really, I was told that my son was autistic, and remember only thinking, “Ok, what next?” Maybe it had helped that I was in the military for a little while, I don’t know, but I think we’re all capable of rolling with the punches when it matters.

I also think we can, most of us, gut it out and do the really hard work, knowing that it’s going to have a good result in the end. Like digging a septic pit in a third world country, you may have a little unpleasantness, come out dirty, and need tetanus shots, BUT, you’ve improved an otherwise untenable living situation. The two struggles inevitably are: not giving up, and not taking your kids’ anger personally. There is light at the end of the tunnel. And you find, as I have, that the only real price is having to relearn how to be a social creature. Don’t give up. Your kids wil thank you, whether they know it or not.

On a different note:
<<If you are a friend to someone who is parenting a child on the spectrum, stay that way, even when it seems like that person is hiding from you. If you just know a family who has a child on the spectrum, give them a pat on the back for doing the hard work they do. Moms and Dads like us don’t like to ask for help, don’t look for sympathy, and already get too much advice or criticisms from perfect strangers. We just need support and for others to make the first move, sometimes.>>