Saturday night, I had a brief and unexpected Moment of Clarity. I never could have dreamed that I would get to this point when SB was diagnosed with autism back in November of 2006. You see, when SB was diagnosed, Charlie and I were crushed. The Developmental Pediatrician told me that she thought he may never speak and might be mentally retarded. (She is an idiot, and we don’t see her anymore. But that’s not what this post is about.) SB’s future was not only unwritten, but also pretty bleak.
In the first year or two after his diagnosis, if a pharmaceutical company had developed a pill to get rid of autism, I would have paid ANY amount of money for it. I would have sold my house, all my possessions, and my right arm to give that pill to my son. To make him different from what he was. To make him “normal.” I actually used to daydream about this very scenario.
Now fast-forward six years. The last six years have been hard, there’s no doubt. But each year gets a little bit easier. Not EASY, but easier. SB learned to speak, and has learned so many other things as well. He goes to school with all of the other kids his age from our neighborhood. He still needs support and still has some problem behaviors, but each year gets a little bit better. And more importantly, his amazing strengths are starting to shine, such as his perfect pitch, his unbelievable memory, his ability in spelling, his mature understanding of math, and his sense of direction. Also in those 6 years, his younger brother was diagnosed with autism as well. AB seems to be a “milder” version of his brother, if that makes any sense. His deficits are not as profound, but his strengths are not as extreme, either. However, he also is starting to show a good sense of direction, a capacity for memory, and an aptitude for spelling and math, which is great.
So far, this post has just been a summary of things I’ve already blogged about. It’s time for me to get to the Moment of Clarity I had on Saturday. The four of us were at the Capitol City Brewing Company in Arlington, Virginia having dinner with 5 other family members. It was busy and loud, and I was kind of neglecting my kids, letting them be as loud as they wanted (they are ALWAYS loud!) because I was really craving some adult conversation. But after a while, they refused to be ignored, so I began paying attention to them. They were both writing with crayons on their restaurant placemats, which contained mazes, word searches, and other activities. SB loves word searches and both of them love mazes, but they had already done those and had become bored with these activities. SB had turned to writing his multiplication tables on his placemat, both the fours and the fives. I smiled thinking about how not many second graders know their multiplication tables. Then AB started to skip count for me. “Mommy, I can count by fives!” he said. And he did, all the way to 100. “That’s great! Can you count by 2s?” I asked him. “Sure!” he replied. And he did, all the way to 50. Can most kindergarteners do that? In the first half of the year? I really don’t think so.
And that’s when it hit me. That Moment of Clarity. Ok, maybe it was partially inspired by the beer I’d had. But in that moment, I thought, “I don’t ever want to change who these kids ARE. I don’t want to give them a pill to get rid of their autism. Because if I did, they would lose THIS. And THIS – this incredible ability to do math, not to mention all of their other amazing abilities, are really stinkin’ cool.” I’ve read similar statements and declarations by other autism moms and dads in books, magazine articles, and blogs. But I never felt that way, never understood, until last night.
Don’t get me wrong, there are still things about autism that I hate. I hate that SB has so much trouble focusing in class and that staying motivated is so hard for him. I hate that AB has so much difficulty paying attention in a group. I really, really, REALLY hate that understanding the social world is so incredibly challenging for both of them, and always will be. I hate that making friends will always be hard for them, and that there will certainly be teasing and bullying throughout both of their lives. Yes, all kids have things that come easy to them and things that are hard for them. We all do. But the things that are hard for SB and AB are so much HARDER than the things that are hard for typical kids. And I hate that.
But Saturday night was the first time that I really felt that if an autism-curing pill came into the picture, I would reject it. I don’t want to make them “normal.” They are extraordinary. Why would I want to change that?
I have mentioned the book Overcoming Autism: Finding the Answers, Strategies and Hope That Can Transform a Child’s Lifein several posts in the past. I even quote a big section of it in Saying the Wrong Thing. This book is co-authored by two women, one an autism treatment expert and the other a mother. In each chapter, the autism treatment expert (Dr. Lynn Kern Koegel) discusses a particular topic relating to autism, and then the mother (Claire LaZebnik) writes about how her autistic son was affected by that topic. It is my very favorite book on autism for several reasons. First, it is full of practical advice on how to help your child and positive stories about autistic children who are thriving, but the biggest reason it’s my favorite are the sections written by Claire. She eloquently put into words so many of the things that I was also feeling, during a time (I read the book sometime during 2007) when my own feelings were often too confusing and irrational to describe. Here are just a few lines that made me think, “Yes! Me, too!”
I’d lie there on the sofa reading a book while (Andrew) gathered together all the kicked-off shoes in the house and put them in a nice neat row. Then he’d rearrange them. Then he’d rearrange them some more. I could read an entire novel while he lined those shoes up over and over again…I later discovered that my lying-on-a-sofa-while-my-kid-lines-things-up approach to parenting was not my finest hour as a mother. Turns out I should have been a lot more active about trying to engage him.
I remember letting out a huge sigh of relief when I read this passage and thinking, “Oh, thank God! I’m not the only who did this!” It’s hard to describe the overwhelming guilt that I felt when I first learned that it was NOT normal for a toddler to spend more than an hour at a time repeatedly opening and closing the bathroom door. For months I had just been thrilled that he was happy to entertain himself while I watched TV. When I learned that all this time I should have been trying to engage him, to play with him, I just felt completely awful. What kind of neglectful parent had I become?
My beautiful little boy had autism. His future was dark and awful. I loved him, but I couldn’t save him from this. In my whole sheltered, charmed life, nothing had ever hurt this much.
Sitting on my bed one night only weeks after SB’s diagnosis, I was feeling too overwhelmed to even stand up. I thought to myself, “Nothing bad has ever happened to me before. Not like this. I just don’t know what to do, what to think, or how to act.” It was true. I grew up in a comfortable, middle-class family. I’ve never had to deal with tragic death, loss, divorce, or pain. I went to college, got a job, got married to a nice guy, bought a house, and then got pregnant. I felt like my life was fairly sheltered and charmed as well, and this news was the most pain I had ever felt.
What if his baby brother had autism, too? Could I ever survive two diagnoses?
Reading this line, while pregnant, made me feel like I needed to throw up. For several years I thought that this was my absolute worst fear. Then it came true, and it turned out to be not nearly as crushing as I had imagined. You can read more about that in How many signs do you need?
Andrew started using a fair number of words, and after a while was actually able to say more than he could understand. I didn’t realize how strange this was until I had three more kids and realized that kids usually understand way more than they can say for the first few years.
Our pediatrician first expressed concern about SB’s development at his 18-month check-up. She was bothered that he didn’t use any words at all yet, and I have to admit that I was concerned about that as well. But she was also worried that he was not able to follow directions. “If you ask him to put something in the trash, is he able to do it?” I’m sure I turned as pale as a ghost. “No,” I replied meekly. “Should he be?” SB did not respond in any way to “No,” “Stop,” or even his name. It was as though he was deaf, but yet he did react to noises, so we knew he could hear. The thought of him following a direction that I would give him seemed preposterous. At 18 months, he was light years away from that.
This concept that Claire mentions is one of those things that I try to explain to friends with typical children, and usually give up. It really doesn’t make any sense. How can a child SAY more than he can UNDERSTAND? But it’s true. For example, between ages 2-3, SB knew the words “put,” “ball,” and “box,” and could say them, demonstrate the verbs, and identify the nouns, but was unable to comprehend what I meant if I said, “Put the ball in the box.” Even now, at age 7, I still feel like I need to simplify my instructions to him and use as few words as possible. If I say something like, “Hey buddy! Your backpack is so heavy. Why don’t you take the library books out so that it’s easier to carry and go put them in your room. Then you can read them later tonight at bedtime,” he’s totally NOT going to do it. And I think it’s mostly because he lost me somewhere around “Why don’t you…” I have a much better chance of success if I say, “SB! Please take your library books out of your backpack and put them in your room.” The name part is crucial. Neither of my children will do anything I ask unless I say their name first to express that I am DEFINITELY talking to them!
So here I was in a new class, at a new school, and everyone seemed so very nice and friendly. The first day, Andrew and I sat on the floor during free play, and he reached for some toy – I can’t remember what it was exactly, but it had parts that had to be put together. Andrew took the pieces and did what he always did with toys: he lined them up in one long neat row, which he kept straightening over and over again. Roberta (the speech therapist) had told us that we had to take an active role in changing the way Andrew played. She said that we had to show him how to play with toys correctly and make him be aware of someone else while he played. So I picked up the toy pieces he had just lined up and said, “No, Andrew, not like that. We play with the toy this way -” and I showed him how pieces were supposed to be used. A mother sitting nearby overheard this. She looked over and, in a friendly enough way, said, “Oh, let him play with the toy any way he wants. There’s really no right way to do it at this age, is there?” I looked at her and wanted to cry. I wanted to cry and yell and scream and shout at her that she didn’t understand, that I had always planned to be the kind of mother who let her kid play with toys any old way he wanted, who sat back and was relaxed and easygoing, who understood that creativity springs from a child’s freedom to play the way he wanted to, who was playful and open-minded and spontaneous and loose…And then I had a kid – a gorgeous blue-eyed, curly-haired angel of a baby – and I let him play the way he wanted to, and he lined things up all day long and couldn’t look anyone in the eye, and now people I trusted were telling me I had to be a different kind of mother, the kind who got in her kid’s face and told him how he had to play, who couldn’t just let him be. Because if I didn’t, he would withdraw further and further into a world we weren’t part of.
Yes!!!!! I have also wanted to cry, yell, scream, and shout about this. It has always been difficult for me to take SB to parties or play dates with typical children and watch them all play. The other mommies sit back, relax, and sip coffee or eat cake and talk about normal stuff while their kids play house or princess or trains. I can never relax. I am always on edge because I am constantly interrupting SB’s play to keep him from using the toys in a stimmy way. Or, I am on edge because I am sitting back eating cake with the mommies and trying to relax, all while watching SB use toys in a stimmy way and knowing that he looks weird to the other kids and is not getting what he is supposed to be getting out of play. Because play is IMPORTANT for kids. It’s their JOB. Children grow, develop, and learn things about their world when they play. Play is crucial for brain development. When autistic children stim rather than play, they aren’t learning or developing. That mother said to Claire, “There’s really no right way to do it at this age, is there?” Well, there may not be just one right way, but there certainly is a WRONG way, and autistic kids tend to gravitate to that.
I have even more paper clipped passages in the book, but to keep this blog post from lasting for an eternity, I’ll move on now. Hopefully I’ve explained well enough how much I identified with this book, and how much I admired Claire as a mother. Even back in 2007, I thought, “I’d sure like to meet her someday. She seems pretty cool.” But she lives in the L.A. area, and I live in Washington, D.C., and so getting together for lunch was not so likely. Until two weeks ago! When I saw that my Fall 2012 Tour with the Air Force Band would take me to, among other places, Los Angeles, I decided to see if I could make it happen. So I emailed her, and asked if we could meet. In addition to two books about autism, she is also an author of fiction. She is somewhat of a public figure, and I worried she might think I was a crazy stalker. (Crazy? Yes, kind of. Stalker? Not really.) But I figured the worst she could say is no, and I was thrilled when she agreed to meet me!
Yes, it can be really cool to tour with the Air Force Band. On this trip alone, I got to go wine tasting in Napa Valley and ride roller coasters at Disneyland. (And if you have read The Happiest Place on Earth – Part I: Lessons I Learned the Hard Way, then you already know how much I LOVE roller coasters! And wine? Yeah, I like that, too!) But being on tour can also be terribly frustrating when you want to do something this specific. When traveling with 80+ people in a caravan of 4 buses and 2 semi-tractor trailers, you are at the mercy of the group without wheels of your own. I had to beg and plead with the tours team to get me to Santa Monica a few hours earlier than the rest of the band to meet with Claire. For some reason (divine intervention?) we had an Air Force Public Affairs member on part of this trip with us, and she needed to be dropped off at the airport that morning, which was near Santa Monica. So I hitched a ride with the airport car.
Then, at the last minute, Claire’s daughter’s school schedule changed, and we thought we might not be able to get together. I was crushed! She even wrote a message to me that said, “I promise you I’m not that exciting in person. We can always email.” But I disagree. I mean, did you read three paragraphs ago? There are so many things she wrote in that book that are fascinating to me! I was incredibly glad that we were able to juggle our schedules to make the meeting work, and I had the pleasure of meeting her 15-year-old daughter as well.
I was pretty nervous about saying something stupid or about forgetting something that I wanted to say. I even made a list of all of the things I wanted to ask her and remember to do, such as get a picture with her. (I am a chronic list-maker. Sometimes I even make lists of the different lists I need to make. It’s the only way I can create order out of the chaos in my brain!) But in the moment, I was worried she would think I was nuts if I pulled out a list in the middle of our conversation, so I relied on my memory. And of course, I forgot something! (I forgot to give her the Air Force Band CDs I had brought, but I was able to mail those after I got back home.) Thankfully I did remember to ask her to sign my copy of her book. I’d have been REALLY mad at myself if I had forgotten that! (This was my book that has all of my favorite passages paper clipped and underlined, which I was worried might be another sign that would put me in the “crazy stalker” category, but thankfully she seemed flattered.)
I had a fabulous time talking with her! I asked her a few specific questions, such as “When did your son first realize that he was different?” I asked this because neither of my children is aware yet that they are different, but I think that awareness is coming soon. She answered that she and her husband had never NOT talked about autism, so her son was kind of always aware of it. She also said that his desire to fit in with his peers kicked in around sixth grade. I think I asked a few other questions, but since I have lost my list, I can’t remember what they were! Here are the two major things that she said that I took away from our conversation:
1 – “It’s ok to admit that it’s hard.”
Sometimes I get angry that my friends with typical children don’t get it when I try to explain that it’s hard to raise a child (or 2) with autism. They say things to me implying that parenting is hard for everyone and that I don’t know what I’m talking about since both of mine are on the autism spectrum and I have no frame of reference. Well, this is true. But I CAN say that SB, who is significantly more impaired than AB, is much, much, MUCH harder to parent than his younger brother. I am 100% certain that parenting a child with autism is harder than parenting a child with no neurological issues or any other special needs. “Oh, but ALL kids do that…” is something that I hear all the time when I am describing something my kids have done. Yes, all kids melt down. All kids have tantrums. But it’s just NOT the same. Sometimes instead of getting angry, I start to feel that there must be something wrong with me because I feel like parenting (particularly parenting SB) is so incredibly hard and exhausting, and it seems like I am the only one who feels this way. I get frustrated when others don’t understand. But really, how could they? No one is going to be able to truly understand what it’s like to parent a child with autism unless they have a child with autism. Just like I am not really able to understand what it is like to have a child with cancer, to have a child that is blind, to have a child that is wheelchair-bound, or to have lost a child. I can try to be sympathetic, but there is really no way for me to know exactly what that feels like without actually experiencing it. Claire said that it’s ok to admit that it’s hard, so I must not be crazy for feeling that it’s hard, and that’s a relief. And I think that I also need to stop blaming others for not understanding when they haven’t been there.
2 – “You are doing all the right things.”
Claire told me a lot of things about her children, and I shared a good bit about mine. And every time I discussed something that my children are doing, Claire seemed to approve. The biggest one was Behavioral Therapy, or ABA. I’ve stated here before that ABA is the only formal therapy my children receive. My husband and I completely and whole-heartedly believe that ABA works, and is the reason for the successes that we’ve seen in both of our children. Overcoming Autism is all about Behavioral Interventions, so of course Claire and I were in agreement about that. I also described some of the other activities that my kids participate in, such as soccer, tae kwon do, church activities, and swimming lessons. She said that these activities were good, and that getting autistic kids around typical kids and participating in activities with typical kids is the best way for them to practice and enhance their social skills. Hearing her say that we are doing the right things was very gratifying, because I trust her opinion.
Claire’s autistic son is now a junior at a college out-of-state, on track to graduate. He is a success story. Claire and her husband obviously did the right things for him. And his success gives me much hope. Even though I’ve never met him, I admire him for all of the hard work he has had to do to fit into this world. And I admire Claire for putting down on paper all of the things she did, all of the things she felt, and even all of her mistakes, so that the other parents can read it and not feel alone.