But we did, and Iz eventually learned to nurse on her own. She became an easygoing decoy baby, the kind who tricks parents into thinking, "This is great! Let's try for another one!" Motherhood became suffused with the joy and delight of legend, even though it remained overwhelming. I would freak out if people asked me to watch their kids, though -- how could I ever take care of more than one? Iz took up all my time, needed all my focus, all my attention. I didn't see how I could take on any more responsibilities than just her.
When Iz was 20 months old, we had Leelo. He latched on immediately, I exhaled. The overwhelm increased, then receded. Yes, having two children was a challenge, but I found I was up to it. It became possible to bifurcate my attention, or even expand it to include more children than just mine -- though not by much. Surely, that was as much as could be expected from a parent? And who were all these people with three, four, or even more kids? How did they do it? When did they shower?
When Leelo was seventeen months old, we went on a family vacation with some fellow small-child-saddled friends. On the second day, the pediatrician father took us aside and told us that we should investigate Leelo's language and social delays. We did, and were handed an autism diagnosis. I was shattered. We were shattered. Then we went on the attack, with ABA, speech, and occupational therapies, specialized GFCF diets, cornucopioid DAN! supplements, and BioSet treatments. These approaches required enormous time and effort, but even so I made sure Iz got to do as many "regular" activities as possible. And we settled into some routines. Eventually I started to rediscover myself, spend time with my husband, write fiction, take long hikes with friends, and even practice my flute again.
Then we found out I was pregnant with Mali. By the time she arrived, we had jettisoned Leelo's BioSet and GFCF diet and all but the nutritionally reasonable DAN! supplements. We greeted Mali with a streamlined schedule and optimism, but even so our tiny house quickly felt like a cage full of howler monkeys. Iz wanted constant social engagements and conversation and hated homework and would act out. Leelo wanted more Mommy and needed 24/7 minding and would act out. Mali was an easy, easy baby, but even textbook newborns are not a part-time job. We almost lost our minds. Then we hired Therapist A to spend a few afternoon and weekend hours with Leelo. The needle came back out of the red zone, but, again, just barely.
Once I stopped feeling like I was hyperventilating all day long, I also stopped looking for cures for Leelo, and redirected my focus on his educational setting, his home program, his speech and occupational therapies, and setting up facilitated playgroups. I also started being more "out" with Leelo, and took him anywhere he might possibly have a good time. I wanted Leelo to feel comfortable participating in our community and society, and wanted our community and society to know and learn to feel comfortable with him, too. Leelo and I would teach the world that autism is not a crime, not shameful, and certainly not something people could ignore or pretend didn't exist.
But then Leelo started being violent. Unpredictably violent. Mostly towards me, but also towards his sisters and his therapists. And himself. Which is not an ideal behavior pattern for a diplomat: I can expect people to accommodate a kid who is quirky or different; I cannot expect them to put themselves at risk.
We have engaged the services of a behavioralist who specializes in severe violence and acting out. With her help, I hope we will understand the reasons for Leelo's violence, and come up with some positive reinforcements for encouraging him to redirect his violence into more acceptable (and safer) behaviors.
This is where we are right now. I cannot imagine being more stretched by parenting than I am right now. But I also know that I felt the same way at every step before this. Each stage felt like more than I could possibly handle. But, eventually I did. And now I am hoping that I will.
And this stage-based increase in competence and confidence is why I tend to believe parents who say they are overwhelmed, even if they are "luckier" than me, even if they "only" have one child, even if they are richer than Midas, even if it seems like they have all the free time in the world, even if their family is supportive, even if their crisis is something as seemingly frivolous as wanting a pedicure. I might smirk, but I also remember how it feels to be overwhelmed by one easygoing infant.
To everyone who has ever said, "I don't know how you do it" to me: Neither do I. I certainly never imagined that I could. But it's not as though I dove straight into this stage of parenting.
I ramped up.
Technorati Tags: autism, autism blog, autistic, parenting, parenting burn out, special needs, special needs kids, special needs parenting
I am, once again, amazed.
ReplyDeleteInsightful. Bright. Wise.
You have grown with your children.
JG
P.S. When do you write a book?
Lovely post, Squid. Thank you.
ReplyDeleteLove, Laura
Wow. Just... Wow.
ReplyDeleteThat's it, isn't it? The Ramp.
ReplyDeleteYou're one of my heroes.
ReplyDeleteI am afraid of the ramp being too steep. You are amazing and inspirational. I appreciate the link, I am glad to have found you, your blog to put in my wagon while I ramp up my own ramp.
ReplyDelete