Tuesday, November 25, 2008

All About the Boy

I’m never sure how much personal stuff to write on this blog, but every now and then I feel compelled to share. And so right now, even though I’d rather be writing gift guides and assorted other nonsense, I’m just going to rant.

Emmet has Asperger’s Syndrome. Look it up. It’s a disorder related to Autism, but sufferers are said to be “high functioning.” Just looking at him, you’d never know that anything was wrong. But if you spend some time with him, you’ll see that he has trouble with social functioning. Asperger’s sufferers (they call themselves “Aspies”) aren’t good at self-reflection, and they aren’t good at picking up on social cues. They're also (in most cases) uncoordinated, and they tend to have a variety of tics (physical and behavioral). On top of this, Emmet has an anxiety disorder.

Emmet’s life is tough. He is in trouble constantly at school because of the little tics that he’s developed, and because of his anxiety, and because he is afraid of going to the bathroom (which means that he has “accidents”). Emmet makes life at home hard, too. He is almost ungovernable. The things he does that are out-of-line are, essentially, compulsive actions, which means that no chats, no time-outs, no reasoning is useful with him.

My heart breaks for Emmet, because he is such a sweet little boy who just doesn’t understand how the world works. But right now my heart is also breaking because we’re being abandoned. It started out last year, when Emmet’s friends began to distance themselves from him. Even the first graders understood that he was strange and hard to play with.

But right now we’re being abandoned by people I thought were my friends. Our social invitations have dried up. I kind of understand that. Emmet makes any situation difficult – when you’re hanging out with friends, you just want things to be easy. But the harder thing for me is the judgment. As the wise Letitia pointed out to me, people tell themselves that Emmet’s problems come from bad parenting because people want to believe that something like this couldn’t happen to them. Not with their attentive, competent parenting, right? [God knows I’ve thought the same thing; karma is a bitch.] And so the judgment comes down. It hurts.

Now I’m getting left out, too. As I’m sure you’ve surmised, there is no shortage of reasons to dislike me. For instance, what kind of nerd uses the word surmised in conversation? Would you want to hang with anybody who talked like that?

God knows I’m not perfect. I probably shouldn’t have had children. I’m all emotional and flaky and weak. Most of the time I think I’m just not up for this job. I try to use my strengths to help us. I’m good at checking out books from the library, for example. I don’t have a lot of patience for reading them, unfortunately, but Papi does. And that was the other right thing I did – Papi is USDA-Prime husband/father material. Good work on that one, Mamacita.

And now I’ve shown you why I don’t think I could be a writer. I’m generally disinclined to lay it all out there for the world to see. And really, we could have an emoting contest, and I’m telling you, I WOULD WIN. But I mostly try to keep that superpower under wraps. But today I’m telling you this because I need you to leave me some vaguely encouraging remarks in the comment section. I work for the crumbs, you know.

22 comments:

  1. First I have to begin by saying that I completely relate to your inablilty to share such personal details on a blog. But sometimes you find yourself wanting to share a little something with those people that check in with you everyday. We love it, so please share.

    Secondly I want to tell you how cool, strong and compassionate you are. If I lived closer I would bring my rugrats and one of those big streusel coffee cakes over to hang out.

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  2. Hey Mamacita,
    You need to quit beating yourself up. The blessing that your son has brought is knowing who your true friends are. It's like throwing a powerful weed killer in a field and seeing what survives. You're not alone. My son has a long time friend with the same illness. They're 14 & 15 now, & there have been some mean kids along the way. A lot. But the core friends (only 3) have stuck with him, and he knows he can always count on them. But, on the same note, my son is a sensitive, non-sport, geekish guy, so he received much of the same taunting. Find your true blues, no need to make excuses to the others. They weren't worth it from the start...

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  3. I feel your pain. My daughter is 5 and has autism. I am not going to trade horror stories but I will tell you that everyday some insensitive dickweed will make a comment that makes me want to reach my hand down a throat and rip out a vital organ! What I will tell you is that I have found a few friends here who see past her obvious foibles and just enjoy having us around. You are obviously a smart funny lady and I would have zero problem having a playdate with you and yours. Don't let the idiots beat you down. Some days kill me but other days make me just realise how much good there is around us.

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  4. First of all thanks for sharing something so personal. In my early blogging days, way before Coterie I had a very personal blog that got me in hot water. I let it go private for awhile but always go back to it because it was my first blog where I really bonded with a lot of people over my situation. As of last night I opened it back up - all the old posts are archived so no danger in getting in trouble yet again.

    I don't have children so I can't really help you there but from what I've read these past months you seem like you really have your act together and are quite personable. I am sure you are doing the best you can!

    Feel free to stop by my "personal" blog and unload anytime.

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  5. I don't have kids, so I don't really understand, but I am sorry you are going through this. I hope you have some true friends that will accept life as it is.

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  6. As a teacher (& yes, a big fan of Emmet) I can tell you...there are no shortage of "odd ducks" out there and kids can be cruel, but they can also surprise you and warm your heart. I have an "Aspie" in one of my classes and I have seen more than one of his classmates come to his defense when a new kid tries to make fun of him. As they get older, they get more accepting...we did too. Remember all the "weird kids" we used to know who now are just the "quirky individuals" around town. Eventually, the kids will see how sweet he is. It just takes one, and more and more will take the bait and see that his quirks don't mean he isn't cool to be around. Just continue to make him well rounded and give him a wealth of life experiences. He will never remember the bad when he has so much good to hang on to.

    And PS...I agree Papi is USDA Prime Pops material...but Mami is no slouch in the Parenting Department herself!

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  7. Thank you, Mamacita, for writing this. So honest and brave.

    (loved the "insensitive dickweed" comment)

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  8. I'm so sorry to hear the news about Emmet.

    You guys do rock, though. I was just thinking about a magnificent pot roast you made for me and John way back in the day. Not to mention that you wield a mean semicolon.

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  9. I think you're just the bees knees. I really do!

    Now let's talk fun. I bet, in that city of yours, there's a group of parents with children who have similar special qualities. Why don't you seek out friends and social outings with them? I'm sure there's many who have been exactly where you are and who better to form new, supportive and positive bonds with?!

    I dunno... to "self-helpy"? It's just an idea.

    Either way, big hugs from me.

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  10. Yes, thank you for sharing this. You are not as alone as you feel. My kids have had their own range of challenges (from Tourette's to Aloepecia and beyond).
    I only know you from reading your blog, but the sensitivity and humor you reveal here, tends to make me believe that armed with those qualities, you must be a really great parent.

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  11. I have a brother who probably would have been diagnosed with Asperger’s Syndrome had that been more on the radar 35 years ago. He went through all the taunting and friend loss as well, but he always had his brothers and sisters. He is now married to a wonderful, very smart, social woman and they have a beautiful child. At their wedding rehearsal dinner, my father stood up and said that usually at rehearsal dinners we tease the soon-to-bes with stories of all the mistakes and things they did wrong, but my father said correctly that he couldn't come up with anything bad to say about my brother. Everyone at the LARGE dinner said the same thing and what a fabulous honor and joy it is to know him. Of course, we all had to rib my brother about the fact that he wears a full baseball uniform when he goes to the pro baseball games in our city!
    of course there were bad days, but my brother is one of the greatest people I know.

    Your son has a great life ahead of him!

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  12. There's not much for me to add to this. I love reading your blog and wish you all the best.

    I'm a teacher and I've taught several students with Aspergers. They impressed the hell out of me. Some kids understood better than others. One thing I did was to do lessons on uniqueness and our differences. They were broad reaching lessons, encompassing different learning styles, social situations, etc. One year I taught a student with CP and his mom asked to come in and talk to the class about his situation. It was wonderful.

    Your son clearly has wonderful models and great support.

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  13. Don't be so hard on yourself. My son has seizure disorder and a LD. There are days when I feel like a totally inadequate and useless parent and he just frustrates me. (Just as there are days when I (probably) frustrate him). (We've all had days when you just want to cry and stay in). But for every bad day (and idiot I have come across), there are lots of good days. Just hang in there and have faith. Trust yourself.

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  14. I love your blog and it always makes me smile as I think I feel the same way! As a parent of 3, I think that every child presents challenges to their parents- the toughest ones are those that we have a hard time helping out with...I have one child who is barely on the growth chart and another with moderate hearing loss. My daughter is living proof that the curse my mother put on me -- that I would have a daughter just like me when I grew up-- has come to be.....I think that if you weather this tough time, those who are true friends will come shining through and will be even more cherished by you as a result.

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  15. A few years ago I realized my son was not quite on track. I'll sum the whole thing up by saying that he was my third, I know boys don't talk as soon, but something wasn't right. For a while it was evaluations and therapies and really lovely and loving people working very hard, and loving my son, and being very vague. Once we had waited out the waiting list and met with the specialist, we were reassured that he is "not in the spectrum" but, well, "quirky for sure." (And you should have met the doctor who told me this. Complete pot and kettle situation.) But through all of it one of my friends said, "He will be a successful adult. He will go to college and he will have job and he will get married. School will be the hardest thing he will ever do - and you just have to help him get through that." I do know how you are feeling and I am so sorry that you cannot fix it, because that is what we think we are supposed to do when we are the mommy. But he will be fine and you will get through this. And do you know how I know? Because you are feeling all of it and you are being honest. Wouldn't any of us rather have that mom than the wacky one with the perfect hair and the perfect kids? Yes we would.

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  16. oh Mamacita, how I feel for you. Remember that it's just a rough patch and it is bound to clear up soon and leave you with all the more experience and insight. Just from your blog it is obvious that you are just fantastic and most certainly a superb parent. Hang in there.

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  17. You are so invited to my house with your entire family any time you want!

    We have friends who have children that can be difficult, but if we don't have them over and encourage other kids to be friendly with them, then who will?

    I love your openness and personal posts.

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  18. Big Hugs to you Mamacita. I'm more than happy to spend time on blogs or with people that use the word "surmised." In fact, I will personally make a point of using that word today in your honour.

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  19. Oh pleaaaase don't be so hard on yourself. I love your blog and I love the fact you are so smart and informative. I always learn new words and information from you..You teach me new stuff and I love it.

    As for the little one, different is good. My children and myself are weird and different thinkers and the world needs more people who can think outside the box and less children who can only play soccer and video games. Just wait and see how far in life your children will go. They are truly blessed with many gifts that will make them great successful people.

    I do have one question, are any of you guys left handed?

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  20. As an adult with ADD and a parent of an ADHD child (who is now an adult), I can understand and believe, that you are, and feeling abandoned.

    It happens.

    I would recommend home schooling. I did some homeschooling of my child while he was in middle school and his last three (which we did in two) years of high school.

    I can tell you that my child became quite popular in high school, despite being the child of two geeky, dorky, and not at all popular kids when we were growing up.

    Those friends that enjoyed his company still did after he left public schooling. And he remains quite likable (though still frustrating) to all now.

    You and your child will overcome this. It won't be easy, but it will be so worth it.

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  21. I could have written this. My son has Aspergers, too.

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  22. I wish I had something more profound to share than to say "hang in there," but I don't. While we have friends who have a son with autism, and neighbors with a son with Asperger's, I don't have to cope with the deeply wearying task of helping my beloved child through a circumstance that is difficult for both of us. Hang in there. Be proud of what you've done to help Emmet.

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