Wednesday, October 17, 2007

Thank You.

I wanted to thank everyone for your wonderful comments regarding my post "For Ethan". I know it sort of came out of the blue, and I didn't really explain myself. I thought I should do that now.

Ethan has always been a very active and happy child. Healthwise physically, there's nothing wrong with him. He was early to develop his motor skills--rolling at 3 months, crawling at 5 months, walking at 9 months, running at 9 months and 1 day. So, in that way, he always excelled.

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He was a late talker, though, and when his vocabulary hadn't improved appreciably by 20 months, I took him in for his first evaluation. Since then, though his word acquisition did eventually accelerate, he's always been markedly behind his peers in language development. In the past two years, he's had three more evaluations. They've done tests on his hearing, his motor functions, his speech comprehension. They took samples for blood work. Nothing ever came of it. All inconclusive. His pediatrician said, "Just give it time."

So, we did. I enrolled him in school, and he did well for awhile, until he was moved up into the four-year-olds class. The first day he was there, his teacher told me, "He comes across as slow," because he sat at the table all day and played with Legos. He didn't want to join the group.

Despite his lack of tact, I suggested it might just be because he wasn't used to the class or to his new teachers. "Just give it time," I said.

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The next day, that teacher told me Ethan wasn't slow. He was a "master manipulator". Later, when he also told me that Ethan was a "silent predator", we decided to find a school for him where the teachers weren't clinically insane.

And we did. We found a wonderful little school out in the country where Ethan felt right at home. They have animals there that the kids get to help care for, and a garden the kids get to help plant. Plus, they are constantly making cool things in the classroom--a beaver dam for the kids to crawl in, a rocketship for the kids to play in--hands-on stuff that Ethan took to right away. He loves building things, and he's always been so creative.

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He really came to shine. His teachers told me he was the sweetest boy, that he was very intelligent, a joy to have in class. He listened well, he participated, but once the newness wore off, they noticed he wasn't being included by the other children. They said he was a "baby" and called him "weird". And the teachers themselves reluctantly told me, "He's just...different. He says the strangest things."

"We want to have him evaluated."

I wanted to burst into tears. Not because my boy is different, but because I know that he is, and I feel powerless to help him.

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Another evaluation. What will they find this time? Nothing? Just like the last three times? I told my friend Shannon that as horrible as it sounds, I wish they would diagnose him with autism and be done with it. Then at least I could get help for him, and I would know how to help him myself. But as much as he exhibits autistic traits (trouble communicating, lines up toys in a pattern, memorizes car emblems, is mesmerized by spinning objects, etc., etc.), he also exhibits traits that are incongruent with that diagnosis (warm and affectionate, extremely social, is very empathetic towards the feelings of others, shares his accomplishments, etc., etc.).

Seems he's a conundrum.

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I know that autism is a spectrum disorder, and he could have a varying degree of it, and that everyone with autism is different--some more able than others. And if that's what he has, I will love him and care for him and devote my life to helping him deal with that. And if that's not it, whatever it is that is causing him problems, I'll be there for him no matter what. But I want to know what we're dealing with.

I just want to know.

Because he's a bright, funny, cheerful, amazing boy who just happens to see the world in a different way, and I don't want anything to change that.

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Rimarama said...

Do you read Queen of Shake Shake? You might find some of her posts regarding her son very comforting and thought-provoking.

Mert said...

I hope they do find out what is going on with your son, I know how frustrating it can be to get answers. I'll keep you all in my prayers.

Melissa Garrett said...

I could have written this post myself. My Jacob (6 this month) has twiced scored at the cutoff for autism. He's been evaluated through the school district, seen a psychologist, and we are now seeing a family counselor/play therapist. Asperger's has been mentioned, as well as Sensory Integration Disorder. Like Ethan, Jacob doesn't fit nicely into any one diagnosis; he exhibits traits of several different things. He was on Adderall for awhile, but it made very little difference in his behavior. I don't believe he is ADD anyway, so I took him off the meds. We are getting ready for an OT evaluation. All the friggin paperwork! I know how frustrating it can be not knowing on top of people who just don't understand.

newnorth said...

I know that finding out what is different is important just to help and to better understand, but I just thought I would say that, in my opinion, people who see the world differently are more likely to make a significant change in it. (I hope that makes sense)

Good luck with everything!

Avery Gray said...

That does help, Newnorth. Thank you! And I wholeheartedly agree! He's got big things in his future, I can already tell.

Rimarama, I haven't read Queen of Shake Shake, but I've seen her comments every so often. I will look her up. Thanks for the recommendation!

Mert, what can I say? You're a sweetie! Thanks for the words of encouragement!

Melissa, I am so glad to know that we are not alone in this! In fact, since I posted yesterday, I've been contacted by many moms who say they are going, or have gone, through the same thing with their child. I know you know the frustration that comes from having a child who doesn't quite fit the "normal" mold, whatever that may be. It's a struggle to insist on doing what you feel is right for them when you are told you don't know what you're talking about. I may not know what his disorder is, but I know my son. Thanks for your comment!

R said...

My son has hyperlexia and Asperger's syndrome. He struggled to make sentences--struggled with language. When he was little he was obsessed with letters and numbers. I think I did tell you about the reading at a very young age with no help.

The spectrum is very broad, so just be open because your child is unique and requires unique attention. If he is socially fine but just a strange kid and says strange things, he is most likely a genius!!! :)

I suggest you take him to a psychologist to get further evaluation so you can better help him. The only thing I wonder about is that the kids, you said, have said that he is weird and a baby. That could mean nothing, but it could be a potential social problem. Does he seem to care what others think of him? My son used to be in his own world. He could never connect with kids. He would always get his pronouns mixed up---call a he a she, and whatnot. He would "play" with kids, but never truly with them. He would run around, get hyper and say stuff like, "kids! kids!" and no one would pay attention to him, and he had no idea. He just kept going. It was like he realized that kids were around him, but he was in his own world. It was a very bizarre thing.

I hope you get things figured out so you feel better about it all. It is so hard to not know something---but then it is hard for people to say your child is "different". But it sounds to me like he is a genius, and he is going to be alright.

Dedee said...

I can't imagine what this must be like. Prayers for you and hope that you can figure some things out soon.

Lisa said...

I don't have children, but I used to teach kindergarten. It was a great thing you did moving him to his new school. I can't believe a preschool teacher would call a child a "master manipulator" and a "silent predator". Seriously, there's something really wrong with that teacher.

I'm with Newnorth on this - "people who see the world differently are more likely to make a significant change in it." I couldn't have said it better.

Be strong, and good luck!

Nap Warden said...

So hard for you. Ethan sounds like a wonderful little boy who is lucky to have a mom who loves him as much as you. I hope you find your way through this...

Bec said...

I haven't finished reading the post but I wanted to say before I forgot...

"A master manipulator"? Seriously! Someone has issues here and it's not Ethan!

loveyh said...

Master manipulator and silent predator only apply when there's treats about...just like any other 4 YO boy. We'll get through this, Avery--you know we will. :) I promise we'll figure it out, then we'll march back into the old teacher's classroom and laugh at him. I don't think he's insane...I think he drinks and sneaks the kids' ADD meds.

Sheila said...

I can't even imagine the frustration and heartbreak you must feel. The teachers, the doctors, the unknowns of why or what. Hopefully one day, someone will give you the answers and hopwfully it is soon! Best Wishes!

Emma Sometimes said...

I can't help, but I WANT TO. You are doing all that you can do for him, and that speaks volumes. ((hugs))

PS. One thing I can do is scissor kick heads perfectly, just say the word.

Mommin' It Up! said...

Limbo is such a terrible state! He really must be an amazing kiddo to inspire such beautiful words from you. My prayer is that you receive diagnosis, direction, and action soon!

Mad goat lady said...

Ethan is such a gorgeous little boy, and such a lucky one to have a mother who cares so much about you obviously do :)

Heather B. Moore said...

If there is something more that you can do, it would be nice to know. But what if there's not? What if he's fine? I guess that's the hard part, is not knowing for sure. I look at my children and wonder how they'll look back on their childhoods. Did I overdo something, neglect another aspect? There are so many who want to put a label on any child who acts out of the norm. But what is normal? Are we sheep? As parents, all we can do is the best we can with the knowledge we have "today."

Avery Gray said...

R, thanks for the suggestion! I would love to take Ethan to a psychologist. Unfortunately, if he is not referred by his pediatrician or the school district, insurance will not cover the costs, and we cannot afford to pay for it out of pocket. And because all the evaluations thus far have been inconclusive, we've not been referred. I'm really hoping this next evaluation will either turn something up, or will put the matter to rest once and for all. And it would be great if he was a genius, but I'd be happy with just a well-adjusted kid who can manage reasonably well in school and in life.

Thanks so much for sharing your son's story with me! I hope he is doing well. You are a strong woman to continue to perservere, especially when it's difficult to see the progress he's made. But your story about him hugging you and patting you brought tears to my eyes. Okay, I was already a watering pot, but that certainly didn't help the situation! How wonderful that you can see the difference you've made in his behavior! I wish you and your family all my best!

Avery Gray said...

Dedee--thank you so much! Prayers are always appreciated!

Lisa and Bec--I know, huh? The guy was a nut job, and we are so glad we got Ethan out of that school. He is SO much happier now. Thank you!

Nap Warden--thank you! I'm pretty lucky to have him, too!

Lovey--you always got my back! That's why we hang. 'Cause you're my b!

Sheila--you are so sweet! Thank you!

Emma--I love you! And I hope you didn't mean you would scissor kick Ethan in the head, because I don't think that would help. Believe me, I've tried!! He's got a head of concrete, that one. ;o)

Mommin' it up--thank you! And, yes, he is pretty amazing!

MGL--He's easy to love. Thanks so much for your comment!

Heather--you are so right! It is so difficult, as a parent with no practical experience with this, to know what is expected and what is not. What makes it especially hard is that his behavior is different at home than it is in school. So, as much as I know him when I'm around, he could be someone totally different when I'm not there. Not out of maliciousness or manipulation, but just because he's being exposed to a greater amount of sensory stimulation, and he doesn't have anyone's undivided attention. That can be rough on an only child. What if that's the only thing "wrong"?

melody is slurping life said...

Avery, first a {{{hug}}} and then an "I understand". As mom to two on the spectrum, both very different, I understand the just want to know...that it makes no difference because he is still Ethan. But It just helps to know so that you can attempt to see the world through his eyes and share the beauty of who he is, of how he perceives the world around him. And you will, no matter what the diagnosis.

BTW, you won the pregnant or not contest at my place. Email your addy and I'll send your gift card.:)

Danielle Blogging for Balance said...

As an instructor of developmental psychology, both of your most recent posts struck a chord with me. On the one hand it is important to know that we are all different. Every single one of us. Each of us has our own challenges and our own personal victories (as do our children). On the other hand, I certainly can understand the desire to obtain a diagnosis. It would give you a template to move forward in providing your son all that is available. As parents we all desire a plan, direction, something that we can follow to bring our children up to their fullest potential. However, ultimately it is following the plan that is in your heart...the plan of loving our children as deeply as we can...that will bring them the success that we long for them to have....with that being said..if you love them with all your heart, you have done your best for them. Your son is lucky to have you for his mom.

Erin said...

I don't really know what to say except that my thoughts and prayers are with you guys. Hope they can find something at least to give you peace of mind and heart. But whatever the outcome he's still your sweet boy. (((hugs)))

Avery Gray said...

Melody--thank you! For the encouragement, and the gift card!

Danielle--thank you! I feel pretty lucky to have him, too!

Erin--I'll take hugs anytime! Thanks!!

cate said...

he looks and sounds like such an amazing boy. i wish i new what to are such a strong woman, and it sounds like you are doing everything you can for him. i just hope you get an answer so you can stop hanging in the balance...

have you ever read the Queen of Shake-Shake? Heather's son Payton is suspected to have Asperger's. she's been through a lot with Payton's school too.