Thursday, October 11, 2012


Did you daydream when you were young of the children you would have when you grew up? Did you have fun imagining what they would be like and fantasize what great things they would accomplish? Maybe you hoped to raise a political activist, or the next Olympic champion, or an award-winning novelist. Maybe a lawyer or a doctor seemed like a good addition to your family.

I thought about what my kids would be like, too. Oh, not in great detail - I didn't often get much beyond the fact that I wanted two kids - a boy and a girl - and I would name them Nicholas and Felicity. Mostly I spent time imaging what they wouldn't be - fat like me. They'd be good at sports and popular and brilliant. Of course.

Those fantasies become more concrete when you actually get pregnant. Nine months you have to dream about your new little one - how perfect they will be. You're sure they'll get daddy's math ability and your gift with language. You want them to be kind and generous and happy. You want to give them everything you can. O.K., at least that's what I assume you want(ed), because it's what I want(ed).

When reality doesn't dovetail nicely with that fantasy, it can be traumatic. As we age, we learn so much more about what could go wrong. We hear about kids with cancer, we know people whose children have Down syndrome, we see children struggling with cerebral palsy or ADHD or what have you. Or do we? I am not even sure if I noticed that when I was in my 20's. I do now.

When our son was born, we were over the moon. But it quickly became a nightmare of my post-partum depression and anxiety coupled with a screaming infant who never slept, who had reflux, who was difficult to soothe, and who robbed us of the joy and peace we thought was coming. Don't get me wrong - we loved him fiercely then, we love him fiercely now, but it was a wake up call.

Yes, most new parents get that same call. This parenting stuff is SO much harder than we ever expected. Many of us gain newfound appreciation of our own parents and what they did for us. I sure did. But even from the start, it seemed as if Jeff was wired differently. Well, at the time I'm not sure we knew much better, because he was our first-born. But why did other parents seem to take to parenthood so easily? How come other babies seemed happy and content, slept in their strollers, slept through the night, and ours didn't?

In truth of course there were a lot of happy moments with Jeff as a baby. There are always lots of happy moments with him. But the hard moments came and came often. I could give more examples, but I won't.

When he was 4, the preschool noted he didn't always make good eye contact. What could that mean, Brett and I wondered - was he autistic? We had wondered that occasionally at other points based on his behavior, but were always reassured that wasn't the case.

When he was 5, he started sniffing and clearing his throat. Repeatedly. All the time. After umpteen trips to various ENTs, a chest exam, and all sorts of stuff like that, a developmental pediatrician confirmed what our own family doctor had begun to suspect: Tourette's. The same pediatrician, by the time Jeff was 7, added to that diagnosis an Asperger's diagnosis. Mild, she said. High-functioning. Whatever that meant.

I, the dutiful mom with academic training, bought a zillion books on Tourette's and Asperger syndrome. I read one or two on each topic. I carried and carry the guilt around of not having read them all, of not doing more to educate myself and know know know all there is to know, not trying more things, not doing....but after a while it's overwhelming. It's exhausting. It's terrifying and disheartening, and when your kid seems to mostly be doing O.K., it's easy to avoid it.

And he's mostly been O.K. Or at least I've been able to convince myself of that. I can give lots of examples of things he is and isn't doing. But I won't.

Because the truth is, I managed to convince myself for years of the short descriptions we've given to others and used for Jeff himself to understand what he's "got". We've said Tourette's just means his brain sends out extra signals to his body, so he has tics. And sometimes it means he's more emotional. Asperger's just means he's slightly less socially adept and maybe takes things too literally.  No big deal, right? And up until now, it hasn't been. I haven't cared that he's not the star athlete or doesn't have a kajillion friends, because he's been doing fine in school. Because he's smart.

And there falls my last fantasy, the one I've held on to more than any other. It was easy to let go of the idea of having the football captain or class heartthrob. I never was one of those things anyway. But I've always been smart. Always excelled in school. Always known, even in the midst of all my other self-doubts, that my brain is something upon which I've been able to rely. I can write fairly eloquently. I have strengths in smarts. My husband is brilliant. His memory astounds me, his vast knowledge set across a variety of topics amazes me. So wasn't it natural to assume, rather arrogantly I guess, that our kids would fare as well academically as we had? That they would excel, our little brilliant offspring?

This is not to say Jefferson isn't smart. He is. But he is struggling in school. Granted, this is the first year of middle school, and the first quarter at that. I know some things are likely to improve. But it has been so, so hard to watch him struggle and fail. He's flunked tests. He's disorganized and scatter-brained. Explaining concepts over and over again in different ways doesn't always seem to get the message through to him. We can tell him repeatedly, "Bring your homework notebook to every class. Write down right away what the homework is as the teacher is writing it. Bring the homework notebook home." But it often doesn't make it home. Sometimes he scribbles homework on a loose sheet of paper, which is better than not writing anything down at all, but what he does write often isn't complete. We discover after the fact that he had stuff due, that he had quizzes in class.

I'm doing my best to help him stay on top of it. Oh, who am I kidding? I'm doing my best to stay on top of it for him, as is my husband. We're in contact with the teachers and coming up with helps. We have our first conferences on Friday. We'll see what happens. In truth he's not doing poorly across the board, not at all - but his grades are lower than they ever have been. And in working with him, it's obvious that he's struggling with the learning. It doesn't come easily. His reading comprehension in particular is low, and to a mom who LOVES reading and books and excels in these areas, it's tough on me.

And here's the thing. I've picked up my books again. I promised the teachers I would read my book on academic success for kids with AS, and on teaching kids with TS. I'm not even done with the first one, and I'm catatonic. O.K., yes, maybe that's a little strong. But all I want to do is sleep. And eat. And deny.

Because the book is painting a broader picture of how much his AS wiring really affects him across the board. Of just how many things are affected by his different wiring, and how difficult school and learning may be because of it. I know the TS book will say the same. And so I can't nonchalantly shrug it off anymore, even as we try to get family and peers to do the same.

Lots of times you hear reference to Aspies as "little professors." As brilliant. Gifted. And I'm not even saying Jeff is or isn't, but it's been easy for my smarts-loving brain to latch on to that - to hold onto it as other fantasies about what he may or may not be have crumbled. I've had to watch my athletic, sports-loving husband accept that his boy is not the same way, but through that all I guess I was telling myself "At least he's smart. He'll excel academically. His parents both did."

And again, I feel compelled out of guilt to say he IS smart. Because he IS. But it's not translating into school success this year, and I find myself freaking out that it never will. If it's this bad in 6th grade, what can high school possibly be like? College? How can he do well in college if he is constantly losing stuff and can't stay organized without his mommy's help?

Yes, this is only 6th grade. He's only 11. I know logically, through maturing and yes, through lots of help from us, he will get better. But I don't know anymore whether or not he will be great academically. And I have to let go of that fantasy that he will, because it's not fair to him to put that pressure on him. I know that intellectually. I know even if he gets Cs instead of As he's still a great kid and it doesn't mean he can't be successful in life, blah blah blah.

But oh my heart aches for him. At how hard all of this is. His tics have been terrible - partly, I believe, because of the anxiety this school year has brought. And his other struggles are becoming more apparent.

I have 1/3 of the AS book to go and all of the TS one. And I know now why I've been avoiding them for so long, even as a responsible mother I know I owe it to him to read as much as I can.

Because they fill me with grief. They fill me with grief. I am grieving again over the loss of the son I thought I would have, and grieving for the pain and struggles and suffering he still faces from these two brain wiring issues.

Why him? Life is hard enough as it is. Why does HE have to face this? God, give ME the tics. Give ME the faulty wiring. Because it's hard enough to grow up as a relatively neurotypical person; he doesn't need extra crap thrown his way. But he's got it. He's got it.

Yes. I'm grateful he doesn't have cancer. I'm grateful he doesn't have something far more debilitating. I'm grateful he's alive and with us and the delightful kid he is (most of the time :)).

But this week? I am grieving. I feel so heavy. My heart aches. I've cried on several different mornings, once for about an hour. I don't want to go out. I want to eat crappy food. I want to sleep and sleep more.

Because it's a deep grief.

I need to get over it. I need to snap out of it. I need to focus on all the positives (and there are many). But this week it just feels too hard. Watching him slap himself in the head and take successive tries to get a sentence out, watching him not "get it" after multiple explanations and examples of a scientific principle, I just want to weep for him.

He is my beloved, he is my son.

And it's a deep grief.


  1. (((Hugs))) I unfortunately feel your pain. Both my kids I have cried and will continue to cry numerous tears over. Parenthood with all it's wonderful grace and glory is so very hard and it really really takes a village. Email or call or visit me anytime you need to--we need to support each other.

    1. Thank you, Lara. I know we face different challenges and yours are harder, I'm sure. But I appreciate the support.

  2. Hugs to you my dear friend. My heart aches for much. I'll be here whenver you need to talk.

    1. Thank you. I adore you and value your friendship and support more than you know.


  3. Jeff is creative. He is a deep thinker. He has a sense of wonder. He cares about others. He is truly one of my favorite people. I know I only see the happy, good-natured Jeff, while you have to deal with the melt downs and anger he can only let go of in the safety of his home, but I really know in my heart that he will grow into a good, strong, and kind person. I know this because he has you!

    You are such a good mom. You've advocated for him. You've worked to give him an accepting, loving educational environment. You've helped him cope with the ignorance and ugliness of others. You've provided him with so many, many opportunities. Most of all, you've loved him. And though you may be grieving the loss of the child who might of been...You've also always loved Jeff for who he is--an imperfect child of God, that you've been given the opportunity to guide into adulthood. He couldn't have landed in a better spot!

    Having said that, I also know it's tough. It's tough to always have to be THAT MOM. The mom who has to deal with the melt downs while holding her temper. The mom who has to work doubly hard at making sure her kid gets his homework done. The mom who worries that this may be the year the kids in school will start bullying her son because of his differences. It is incredibly tough to be that mom.

    So you know what? It's okay to be sad and angry and just plain old worn out. That's when you reach out to friends and say, "Help!" and we say, "We love you! You're a great mom! We're here for you! We're sorry Jeff has to struggle! We love him, too! What can we do to help?"

    So that's what I'm saying. Let me know what you need. I open to anything from a listening ear and a bottle of wine, to an afternoon of occupying your kids so you can get a break. Just let me know.

    But you know that kid in class who has perfect handwriting, the neatly organized desk, and who always hands their homework in on time? That kid may get the gold star,but they are also really, really BORING!!! Something life with Jeff will never be!

    Love you!!!

    1. Ummm...Sorry that was so long :-)

    2. Thank you, Melanie. This is awesome. I'm doing better this week.

  4. Anne,

    I appreciate your honesty about this struggle and you expressed it so well. I'm going to share it with a friend.