Depression

     Back to the stages of grief….    

     Last year was terrible as we lived far away from family, we were all sick constantly, C had a horrible school situation, and we couldn’t find therapists. I was stressed to my limit, and finally broke down and saw a psychotherapist myself. When I told her I thought I was depressed, she laughed and said “Of course you are depressed - I’d be worried about you if you weren’t!” What a relief to come across someone who thought this was absolutely normal given the situation. I had never thought about it in that way, and wondered if perhaps I was overreacting. Having someone objective acknowledge the stress of what we’ve been through gave me the strength to start moving beyond it.

     I still struggle with bad days, and have come to realize that my bad days often coincide with C’s bad days. I try very hard not to make HIS bad days coincide with MY bad days. I know people think kids with autism don’t notice other’s feelings, but I don’t find that to always be the case. With C, it’s not that he doesn’t recognize how others are feeling sometimes, but rather he internalizes how others are feeling to such an extent that doesn’t really know how to cope. He is very reactive, and sometimes I think he has the weight of the world on his shoulders.

The Gift

     C spoke his first word two weeks before his second birthday. He said “more.” We expected additional words to come quickly, but it took another painful year before he added more than a few words. Then, when he was 3 1/2, his language exploded and all of a sudden he had tons of words. Like many children with autism, he repeated phrases and sentences he had heard elsewhere (echolalia). He often used the phrases and sentences in the appropriate situations, but they were all parroted back to us in exactly the way they had previously been spoken by someone else. That someone else was either a family member, a tv commercial, or a cartoon character. It really was quite amazing that he used the words in the correct social situation, which led people to believe he had more language than he did. He never said anything spontaneously, and there were certainly no back and forth conversations.

     I remember his first “creative” conversation vividly. We were in Target, and I was buying wrapping paper for his upcoming fourth birthday. I was talking my way through the store in the way I usually did with him - constantly trying to engage him in a real conversation. I told him the birthday paper was for wrapping all of his birthday presents. He was silent for a few moments before he looked through the tube of paper and said, “But Mommy, there’s no presents in there!” I was stunned, and walked around the rest of the store in gleeful, tearful oblivion.

Soccer Moms

     I suspect some people would call me a soccer mom. I drive a volvo station wagon, don’t work outside the home, and live in suburbia. But to me, a soccer mom is the lady I saw at gymnastics tonight. She reminded me how happy I am to have a child with special needs, because I take nothing he does for granted.

     It is hugely entertaining to watch C in gymnastics as he takes such joy in the class and is an enthusiastic, although terribly unskilled, student. He loves to be there even though every single thing is extremely difficult for him to do, and he compensates in a way that makes everyone chuckle. But one mom was lecturing her son when we arrived about how he needed to work really hard to get to the top of the rope (think 7th grade gym class - who could get up that thing???). She went on and on about how he just had to do it. It wasn’t encouraging at all, and I felt sorry for the little boy (who of course couldn’t do it). I could see the future of this mother, which included her yelling at her kid from the sidelines of the soccer field because he didn’t score a goal. I could also see her complaining to the coach for playing my kid because he also didn’t score a goal.

     I realized, in that brief and lovely moment, how we take joy in every little thing C does. There’s little pressure; not because we don’t expect much, but because we recognize the effort it takes for him to accomplish anything physical and we are proud when he does. He struggles mightily to walk across that balance beam, and we applaud him wholeheartedly whether he makes it across or he falls off after the first step.

A word about refrigerators

     In the 1940s a theory about autism grew and took hold among some doctors. It blamed mothers for causing autism with their cold, distant care and feelings for their afflicted child. They were called “refrigerator mothers.” When I first heard about this theory, my initial, vehement response was how ridiculous the concept was. Of course the idea was later dismissed wholeheartedly by anyone who mattered. But in the back of my mind, in the admittedly negative way I sometimes talk to myself, I wondered if I played a hand in my child’s autism. It’s completely irrational, and I know this, but it made me second guess everything.

     There are women who absolutely radiate love and joy when they are pregnant; they revel in each and every moment and experience of pregnancy. There is something beautiful about these women, and I marvel at their seeming knowledge and confidence that they are doing what they were born to do. I was not one of these women. I was miserable in pregnancy, and my own mother later confessed she was worried I wouldn’t bond with C because of it. This was said in a moment of praise for what a great mother I turned out to be. But it gave voice to my fear that I hadn’t in fact bonded with C and that no one else noticed but me. When I first touched him, I stroked his belly, and all the monitors attached to him went crazy. I was told to only touch his head as his system was so overloaded even the most gentle touch was disturbing. How did I not instinctively know this? My first Failure as a Mother. No one could hold him, and I in fact didn’t hold him until he was 5 days old. When I finally arrived at the hospital where he was taken to save his life, and was then able to hold him, I worried that he and the world (and more specifically, I) somehow missed an all important moment that only comes once.  

    

In the same vein

     We have used a behavior modification method called “Applied Behavior Analysis,” otherwise known as ABA. It is a common intervention used to teach children with autism various skills. Critics say it turns our kids into perfect little robots while the faithful say it prepares them to function in our world. Frankly, at its most basic level, ABA reminds me of the way we trained our dog. Task, reward, motivate, withhold reward, perform. At the moment, our ABA provider is actually a dog trainer in her real life, and we both appreciate the irony of that.

     While I think ABA has great potential, I also think it has limitations. We use a very watered down version of it, and while I know every moment is potentially a “teachable moment,” we don’t take it that far. I heard a speaker once ask how we would feel if we had to perform for every single thing we were given. If we were asked to do a task in order to receive any little piece of fun or joy, how would that feel? That hit me hard. I think ABA has a useful application with our kids, but I also think it’s important that every once in awhile they be allowed an M&M, computer time, or a simple hug without having to earn it.

Teach and ye shall learn

     I am stunned at how much we take the way we learn things for granted. We (with the aid of many wonderful physical, speech, occupational and feeding therapists along the way) have taught C how to do everything from walk to talk to eat. It’s always physical things as opposed to mental things that are a struggle for him. He can’t button his shirt yet, but he learned all the Presidents, their Vice Presidents, the number President they were, and where they were born (which once resulted in a small argument with a doctor who insisted to C that Abraham Lincoln was born in Illinois - WRONG - and I sent a copy of the flashcard with the correct state of Kentucky to said doctor - DON’T YOU ARGUE WITH MY KID! - which I’m sure he appreciated!) in the span of about two weeks when he was 4.

     That being said, I’m simply fascinated at the process of learning for these children with autism. Blowing his nose becomes a highly skilled activity for C in which the task is broken down into the tiniest of pieces. He has to learn how to take the kleenex out of the box, fold it correctly, hold it with both hands, find his nose on his face with both hands, place the kleenex in the right place over his nose, apply the right amount of pressure with his fingertips, blow, wipe, fold the kleenex after blowing, and finally throw it away. He is finally starting to do this task by himself after years of work.

     So when a teacher commented last year that I shouldn’t help him blow his nose, I reminded myself that I’m doing a very good job of finding the balance between letting C just be a kid and spending too much of his time in therapeutic interventions with the goal of teaching him these skills. It’s important that our children have time to play, hang out, and just be the silly little creatures they are - there’s always tomorrow to learn how to tie one’s shoes.