I have jury duty this week. Lots of sit-and-wait time. Normally, I would relish the chance to read, but since I’m always uncomfortable in crowds (the sounds of gum-chewing can make me come apart at the seams….weird, I know), I couldn’t really concentrate. So I played mindless games on my Ipad. Which gave me plenty of time to think about things other than which little candies matched.
What I realized is that my family just lived through the most life-altering summer since our first child was born. Or maybe ever. Because the change from “bratty kid” mindset to “disabled child” mindset is perhaps even more monumental than that of childless to new parent. I struggled to come up with a good name for this list, so I think I’ll just call it “tectonic shifts in the way I think”:
- I spent the better part of the last decade feeling at turns embarrassed and inept in the face of The Challenging One’s behavior. Oh, and let’s not forget furious. I was almost always mad and resentful. I was shell-shocked and almost always in a mental fetal position, awaiting the next incident. I didn’t like my child very much and felt like the worst mother ever because of it. But a switch got flipped this summer. And I’m not talking about a little light switch. I’m talking about one of those big industrial switches that takes several well-muscled men to manhandle. I got slapped upside the head with the realization that my child has a disability, a disability serious enough to require 6 weeks of semi-inpatient treatment and very heavy-duty meds. And, just like that, my anger was gone. I can honestly say I haven’t been mad at The Challenging One since June. Not that his behavior is perfect — or that I let him get away with anything — but I now see his behavior as symptomatic of an illness rather than a deliberate attempt to punish the world for existing. I am able to slow down and think through what he may be thinking and feeling, and I can respond in kind. I can speak in a calm, reasonable voice (a big accomplishment — even though I have known for a long time that he shuts down in the face of a raised voice, I just couldn’t help myself). I can think in terms of solutions rather than punishments, even though punishments are sometimes appropriate. This change in my attitude, coupled with The Challenging One’s overall improvement, has transformed the beat and rhythm of our family. More laughter and fewer tears. More talking and less yelling. It’s hard to describe, but it’s monumental.
- Embarrassment is bad. We’re conditioned to think that we’re bad parents if we’re not embarrassed when our child acts like an unleashed demon in public. But would you be embarrassed if your child couldn’t walk? Couldn’t see? A child with an infuriating disability is still a child with a disability. Embarrassment only dulls your ability to handle it appropriately. Embarrassment lies to you, whispering in your ear that you’ve got a bratty child and that it’s all your fault. Embarrassment takes up so much room in your heart that there is no room left for compassion. Or for appropriate action.
- Putting a good face on things helps no one. This kind of goes along with embarrassment. I spent years covering up just how bad The Challenging One’s behavior could be. I made lots of excuses and avoided situations that I knew would be problematic. I finally got to the point where I was very open about things, deciding that, if people were going to talk about my child (and I knew they would), I would rather they exchange facts than gossipy speculation. And there’s nothing wrong with that, but I overlooked an equally important reason to be open. Impressions are hard to change. It’s easier to create an air of compassion among friends, teachers, other parents, etc., if you make it clear from the beginning that your child has some challenges. If you wait until they see your child as a behavior problem, it can be hard to change those feelings from dislike to empathy. So I advise being open. I had one very painful betrayal by doing it this way, and I certainly can’t say that won’t happen to you. But I still believe that openness is best.
- Your other kids probably understand a lot more than you think they do. I unfortunately lowered the standards for everybody, believing that The Easy One and The Exuberant One couldn’t understand why they got in trouble for things The Challenging One got away with. When I finally had the conversation, I realized how wrong I was. I told them that, just like some kids have trouble walking, The Challenging One has trouble controlling his emotions. And I asked them whether, if he had to be in a wheelchair, they’d expect me to push them around in wheelchairs, too, just to be “fair”. They got it. And probably would have gotten it a long time ago.
- The Challenging One is not a “normal” child and I must — MUST — stop viewing him through normal child lenses. For my other two kids, getting a note that they got in an argument at school would be grounds for a serious conversation at the very least. With The Challenging One, if he got in a argument and was able to walk away without adult intervention…well, that’s a cause for celebration. He disobeyed me and ‘fessed up? Considering that he used to deny everything even in the face of proof, I’ll put that in the “makes me proud” column. I think this is the single most important revelation I had this summer. He is not a normal child. As long as I see him as a normal child who misbehaves in normal ways and should respond to normal discipline, he and I will both experience nothing but frustration and failure. If I think “he should understand this by now” without listening to the little voice that says, “…but he doesn’t”….more failure. In my experience, the single biggest obstacle in raising a child with an emotional disorder is refusing to accept that you’re raising a child with an emotional disorder and that everything you’ve ever thought about parenting has to be thrown out the window. Things cannot get better as long as you’re operating within the paradigm of how things should be rather than how they are. Sure it sucks to lower your standards for your child’s behavior. But you don’t just lower standards and give up. You lower the standards and then continue raising them a teeny bit at a time while your emotionally disturbed child masters skills your other kids pick up by osmosis.
So, this was a profoundly important summer. I learned the importance of dealing with what is. Not what I thought things would be. Not what I want them to be. Not what other people think they should be. How things are. Everything depends on that. Your attitude toward your child. Your sense of yourself as a parent. Your willingness to do what needs to be done. Other people’s attitudes toward you and your family. Whether your child ever learns the skills you think he should just “get”. Working from a clear understanding of what is is life-altering.
I'm a mom to three stair steps (all 3 born in under 3 years), one of whom struggles with OCD, ADHD and a few other things. I wrote professionally for 12 years before quitting to stay home with my kids.
Life on the Stair Steps 
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