I have no idea what I’m doing

     I have always said I have a PhD. in the study of C, although I think it’s completely obsolete with each new day. When he was a baby, I would sit up late at night typing in keywords from neurology reports hoping to come across the magical answer to whatever seemed to be ailing him. Once we realized there was more going on than prematurity, I started reading. A lot. I had heard of every single genetic disorder, syndrome and issue, and I could rattle off the symptoms of many. None of them fit my C. Even the high functioning autism diagnosis we finally landed on doesn’t really fit C perfectly, but it fits better than anything else anyone has thrown on the table.

     Yet even with all that knowledge, I still feel ill-prepared to shepherd this amazing little creature through life. As soon as I seem to master one challenge, another comes along, and I’m stumped. Be it behavior or gross motor problems or apparent attention deficits, I feel powerless to figure out how to get through it in the most successful way possible. I’m always one step behind him.

     Some things I have down pat. But throw in a completely new issue, and I’m back to square one. I’m reading, questioning, discussing, asking advice and analyzing until my brain is full. And feeling frustrated that if and until I figure out how to deal with this problem number 4 zillion and 96, my child has to pay the price for my complete lack of experience. Where is the fairness in that?

     I should probably ask myself when I will stop expecting to have all the answers. When will I realize that raising this child is like taking a new test in algebra or physics in a different language every single day? Yet somehow, not realizing I’m doing that every single day is probably the most self-preserving denial there is. I think my brain thinks that every new challenge might be the last one, so when one more come along it’s not nearly as overwhelming as expecting them to come along all the time.

Wake up call

     For whatever reason, I am usually the one getting up with C in the middle of the night if he needs something. “How did you sleep last night?” Husband will say, usually followed by my tired litany of how many times I got up for C, followed by my by then awake enough to be astounded. “You mean you didn’t hear him screaming over the monitor???” I’ll say, incredulously. Truth be told, Husband is great about doing the early morning “I NEED A WIPE!” hollers that we get a few mornings a week (that’s another post altogether). Frankly, I envy Husband’s ability to sleep through a hurricane, tornado, hail storm, ambulance in the front room, coyotes outside our bedroom window, or the sounds of the high school band wafting up to our neighborhood on football nights.

     But every once in awhile, C will specifically call out for Daddy. Husband must be in tune to his own name, because when C called “Daddy!” one  wee hour of the morning this weekend, followed by a more frantic, “DADDDYYYY!!!!!!” he managed to stumble out of bed. I blissfully rolled over, grateful that whatever was going on, it was clearly a Daddy issue. Those usually involve needing bandaids in the middle of the night for an owie, either real or imagined (Daddy is a much better bandaid administer-er, a talent I have acknowledged over and over to C in the hopes that some of those middle of the night owies will fall to Husband instead). Yet apparently there is a new skill C feels Daddy possesses: Bug wrangler.

     “THERE’S A BUG IN MY TOILET, DADDY! GET IT OUT!”

The tide comes in, the tide goes out

     A scourge has hit our household; one with the destructive force unparalleled except perhaps by locusts or tornadoes, although I see the similarities, quite frankly. “Defiance” with a capital “D” has landed in our roost. I’m not sure exactly when it started, yet I suspect if I really sat down to analyze it I would see the precursors many years ago. At first I thought it was perhaps a delayed developmental stage, but this two year old “NO” kind of thing is way past its time, delayed or not.

     Usually no one but Husband and I witness C’s most deplorable behaviors, so I admit to sometimes needing a reality check about how bad (or not bad) they truly are. People (translation: my Mom) tend to be skeptical about the extent of problematic behavior we experience at home, mostly because he rarely exhibits it elsewhere or in front of anyone but us. Enter a road trip, complete with Ga (aforementioned “Mom”), C and I last week during fall break. San Diego called, and we wanted C to see the ocean for his first time. The trip was great; Legoland, Sea World, and the beach all competed for the most fun day, and C did really well handling it all. It wasn’t until the last night, probably completely worn out from the week, that C pulled his worst behavior out of his hat. My Mom was stunned. It prompted a long conversation after C fell asleep about what’s been going on at our house. C repeated the behavior the next morning. A screamed “NO, I WILL NOT DO THAT!!!! AAAAAHHCCKKK! I WILL NEVER DO ANYTHING YOU ASK ME TO AGAIN!!!” complete with other gobble-dy gook I’d rather forget left Mom speechless. 

     We piled in the car and came home, leaving Husband and I to do a behavior boot camp this weekend. Lots of long faces from us and talks about being respectful, a few toys lost, some favorite shows erased, and the jury is still out as to whether we’ve made any progress. Like other problematic behaviors we’ve experienced in the past, this one will hopefully go out like the tide. I’m just worried about what comes in after.

When all else fails

     After a particularly distressing evening with C, one where I am striving to keep my patience and calm (and not particularly succeeding), I always enjoy going into his room for the last look after he falls asleep.

     In sleep, he brings me back from frustration to calm. His angelic little face resting on his pillow, blanket and stuffed dog Bill wrapped up in his arms do wonders to make me forget the rest of the evening. No trace of his screaming, defiance and tears are left. I cease to wonder how we’ll get through this latest behavior challenge and gently brush my lips across his cheek. And smile.

Anger

     I don’t think I’ve ever really hit anger. I’ve certainly been angry at people along the way; a teacher who walked out of the room chuckling while I was struggling to get my tantrum-ing child out of the building, a superintendent who saw no problem placing a charter high school in the special needs preschool facility, the ob-gyn who didn’t take my autoimmune issues seriously. I’ve just never been angry at the world, at God, at whatever powers gave me this challenge.

     I suppose that sounds pious, but believe me, it’s not. 

     I guess I just don’t feel like I deserve to be angry. (File that under the “it could be so much worse” saying.) I’m almost afraid if I allow myself to get angry perhaps it will in fact get so much worse. I suppose that places me squarely into a category of people who try to fly under the radar for fear of being noticed by some all powerful being who equalizes things when they get out of balance. There’s another part of me who prays to God not to teach me any more lessons, not to send me any more character building experiences, not to give me any more challenges through which I must find the way. It’s not that I don’t need any more of those things, but frankly I’m kind of tired.

Just what do we need, exactly?

     I used to say “God never gives you more than you can handle.” And, in the way that people we spend only the briefest about of time with can sometimes do, an acquaintance profoundly changed my mindset. I was talking with a woman one day who responded to my sentiment about what God gives us by saying, “No, God gives us what we need.”

     What a powerful statement. I still haven’t figured out how that statement applies to me exactly, but I’m on the watch (and receive clues) for it daily.

      My husband and I have a 6 year old with high functioning autism. He is an extraordinary child to say the least. Parenting him has been nothing like I thought parenting would be – in happy ways and in challenging ones as well. 

     Welcome to our journey.