Jordan Tyler

"When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight."

Kahlil Gibran

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Fairly recently a school administrator described Jordan as seeming no different from his peers except for “having a twinkle in his eyes.” Of course, this was used in a context to justify denial of services he desperately needed and we eventually won – or at least partly won. This pissed Jordan off to no end because, being on the autistic spectrum, he tends to interpret things literally and he knows that eyes don’t actually twinkle, and he also knows that he’s quite different from his peers in so many ways he can’t even understand. He understands the result of those differences though – rejection. This little off-handed remark stung me for a different reason. If ever there was a child with a twinkle in his eyes, it was my Jordan. That innocent, loving, enthusiastic, optimistic, little boy who was so full of life and hope feels lost sometimes these days.
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I deeply believe in God. I believe that things make sense, that things happen for a reason. But more and more lately, as Jordan’s mother I find myself asking “Why me?!!!” It doesn’t make sense. It doesn’t seem fair. I don’t ask “why me?” because I feel sorry for myself. Quite the opposite, I ask because I feel terribly inadequate, because I feel like no matter how hard I try I am always failing my child. If the universe makes sense, what kind of rational God entrusts a person like me with the care of a child like Jordan? Born while his mother was only 19, to two parents barely recovering from their childhoods and not even living together yet – he came home to a one room basement apartment at my mother’s house. After my life, after my struggles, I was just learning to take care of myself.
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I considered giving him up for adoption, which is something I rarely tell people. I’m not sure if I even told Chris because it was just a thought and we weren’t always a couple during the pregnancy. It wasn’t because I didn’t love him or want him. On the contrary, as soon as I found out I was pregnant, and then later when he was just the size of a bean and I saw that beautiful little heart beat, I loved him more than I ever thought I was capable of loving another human being. I thought of giving him up for adoption because I loved him more than anything in the world, because even if my heart broke for the rest of my life for doing it, I wanted what was best for him. When I realized that we’d be able to meet his needs financially (he would never be spoiled, but he wouldn’t starve or go without clothing or medical care) I knew that I could be a good mother. I did everything I was supposed to. I read every pregnancy and infant/child development book in every library and book store around. He had everything he needed and was surrounded by love. I loved him, God how I loved him, long before he was even born (and still do, of course!).
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Unlike Abby who more often than not has a flat affect, and has always been reluctant to smile or show any reaction to all the attention she receives, Jordan was by nature an enthusiastic and expressive baby. And there was no doubt that he had a twinkle in his eyes. He smiled by two weeks. Not those accidental smiles you sometimes see newborns do, but real ear to ear grins. He wasn’t always easy because he demanded constant stimulation ..only to then get over stimulated and cranky, but in general I think he was the happiest baby I’ve ever come in to contact with. He was so excited to explore the world around him, and he would belly laugh with delight, with his chubby cheeks and irresistible dimples, when he discovered something new. He made people smile every where we went. As a new mother I thought this was the norm, but I’ve since realized that he truly was special. Every where – the grocery store, the gas station, department stores – he would babble and coo and attract people’s attention with his big grin.
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From his first birthday I had concerns about an autistic spectrum disorder because of his odd behavior, but he spoke and smiled and made eye contact when he wanted to, so I was easily reassured by his pediatrician. After all, he was speaking clearly by that first year physical when most babies are babbling or learning “mama” and “dada.” And despite the fact that he seemed odd, and did things like rip up paper for hours or knock objects off the table 500 times, there were so many things that were normal, no extraordinary, about him. But most importantly he was fun. His love of life was infectious. As many of you know, I’m not a morning person and never will be. But there was a brief time when I couldn’t help being a morning person. Jordy was so excited by each new day, by each new opportunity to explore the world and learn, that he actually made ME, the surly grumpy non-morning person, smile with delight each morning. For a good six months, probably between the ages of 18 months and 2, our morning ritual was always the same. He’d toddle his little diaper butt in to our room and jump up and down on our bed, barely able to contain his excitement. Each morning to him was like we were going to Disney World or embarking on a huge adventure. He’d shout “Mommy Daddy, look, look, it’s a new day!!! Look at the sun, look at the trees, look at the world Mama!! It’s going to be a GREAT day!!” Who wakes up like that? And who in their right mind could resist that joy and not wake up smiling?
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And indeed, every day was an adventure. Who knows what goes through the mind of a profoundly gifted 2 year old, but he certainly saw the world in a way that I’m sure I never will. Every object, every material, every part of nature was a fascinating and exciting challenge. And yes, he was utterly exhausting, but again, he was so much fun. He took everything in our house apart, he examined everything, he thought about everything, and he talked and talked and talked and talked. I tried so hard not to discourage him because he was so happy and excited that he just wanted to share every thought that popped in to his little head (but I’ll admit I sometimes tuned him out or wished he’d be quiet for just a few minutes). And his questions were relentless, but they were interesting. He made me think of things that I would never have given a moment’s notice to otherwise. He saw beautiful mathematical patterns in nature, he wondered about gravity and mass and the universe….and then he’d disappear in to his own world where all that mattered was listing things, or rocking back and forth. He’d cuddle and smile and laugh, and then he’d forget there were people in the world when he saw an interesting vacuum (one of his earliest and longest obsessions).
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By the time he was 4 his autistic behaviors became more and more obvious when compared to children his age. And while he was still mostly happy, there were times when we’d try to correct his behavior (mainly his repeating or “perseveration”) and he’d burst in to tears, pulling his hair or hitting his head with his little fists, exclaiming “My brain won’t stop Mommy, I can’t make it stop!!” Despite his differences, he got on his kindergarten bus that first day bubbling with excitement and life. I’ll never forget that day – he was still so happy and sure of himself. He was bouncing around waiting for the bus and said “Mom, isn’t this great!! I bet I’m going to learn about Fibonacci numbers and anatomy and everything I wonder about! Everyone’s going to love me, I’m going to meet so many new friends!!.” He came home disappointed when he found out he’d spend the year learning to count to 100, but still believed he’d meet tons of kids who would share his interests and become friends. It wasn’t until first grade, after 6 months of relentless bullying and teasing at a magnet school, that he became a different boy. Again, I’ll never forget that day either – the day he broke down crying and begged me not to send him to school, saying “I’m just not the kind of kid anybody is ever going to like. I hate myself, I hate school!”
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Things got better when he changed back to our neighborhood school and got to skip grades, but he’s never been the same as when he didn’t realize he was different. In so many ways his natural naiveté makes him seem like a 3 year old, but in other ways he’s like a weary old man. It’s such an odd mix – his extreme intelligence and autism. The teasing, the quiet rejection, the obvious differences – it’s all just worn on him, chipped away at his soul. His eyes show such a deep sadness, even when he can’t put it in to words, that it breaks my heart. That “twinkle” in his eyes, it’s been gone or faded for so long that I wonder if it will ever come back. He so often says he doesn’t feel like there’s “a place” for him in this world, anywhere where he would fit in, and while I know in my heart he will make a place for himself in adulthood, where people outside the family will accept him for who he is and love him, I don’t know how to help him find a place for himself right now. He gets angry like any kid, but he doesn’t have a mean bone in his body. I don’t know if he isn’t capable of it because of the autism, or if it’s just his nature. Either way, he just seems so fragile. He may understand physics, but he doesn’t have the ability to understand human nature or all the cruelty in the world. Not that any of us can understand all the horrible things out there, but in a way I think everything - the kids who are mean to him, the prejudices, the things in the news, the wars and starving children - eats away at him and confuses him in a way that I don’t fully understand. Not that these things don’t all bother me, but I must have protections in place so that these things don’t paralyze me with grief. I don’t know. I don’t know how to explain it, but he feels so vulnerable and I don’t know how to protect him from the world. I don’t know how to comfort him in a way that seems effective.
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God, when I held that new baby in my arms, when I saw those constant dimpled baby grins, I could never have imagined how much I’d cry for this child. I could never have imagined how hard I’d try to help him and still feel like I’m failing him more often than not. I could never have fathomed how much I’d grieve for my baby. Without ever having experienced abuse or neglect, with all the love he’s felt from his family, I could never in my worst nightmare have suspected that by 10 years old I’d be looking at such a deeply sad little boy. He’ll never again be that happy, un-hurt, exuberant child who got on the school bus for kindergarten, but I’m so scared that he’s permanently losing the person he was, the joyful person he can be, because with every month and year we see less and less of that Jordan. I’m so scared that this gentle soul who has so much to offer the world will be lost in his pain. It’s so hard not to be angry, angry at the world, angry at the people who hurt him, angry that I can’t seem to find a good place for him to be himself and grow, angry that he wasn’t blessed with a mother who could figure out how to make it all better for him. It’s so hard not to give in to despair, so hard to send him out in to a world that hurts him each day, so hard to watch his pain when I would do anything to take it all away and feel it for him. Sometimes I’ve felt really gypped, because raising such a gifted child has made it feel like there is such a short window where I’ve actually gotten to raise a child. He seems like a man in so many ways, and it feels like he’s raced ahead at a pace I can’t keep up with. Other times he seems so tiny and vulnerable, and I wish I could rush him to adulthood at light speed, where I believe he’ll find himself a place to be happy, and let him bypass all these growing pains. At 19, I could never ever have believed that with such immeasurable joy would come this depth of grief, or that the pain I would feel for him would be worse than anything I could ever feel for myself.
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I know deep down that there is SO much hope for him, that we can get through this, that he has so much potential and so much to offer the world. But when I see what seems like just a shadow of the child I used to have, it’s hard to believe he will be happy again. Lately, I cry so much for him that it’s hard to believe the world makes sense. It’s so hard to hold on to the belief that I was meant to be this boy’s mother when I feel so terribly inadequate for the job and when I feel that he deserves better in so many ways. Why was I blessed with such a special boy and entrusted with the Herculean task of raising him? Why me of all people? I just pray he always knows, in every fiber of his being, that I love him more than I could ever describe with words, that I tried, that I will always try, despite my many failures. I pray that he’s at peace with himself and content with who he is again one day, and that he’ll be able to look back and see that while I didn’t always make perfect decisions, and I couldn’t protect him as well as I wanted to, I did do the best I knew how. I know this sounds so cliché – but I hope love is enough to get him through. I hope that despite all my shortcomings, our deep love for him is enough to insulate and protect him while he’s weak, and learning to protect himself and re-discover the enthusiastic, happy, sweet, and confident person he was born to be.