Saturday, March 15, 2008

Possible Autism

It was brought to my attention that I never talked about Kyra's "possible Autism." So here I go. Partly because I think about it every day. I spend an hour or more of every day thinking about it and how to help Kyra either get past "possible Autism" or successfully live with it.

I knew early on last summer that Kyra was lagging behind socially. Sure she was barely more then a year and a half, but I knew something was a miss. Instead of focusing on it I chose to pass it off as Kyra being quiet and shy.

She didn't talk to but a few strangers because she had a passive personality. She didn't speak more then one and two words at a time because it was a summer of Mommy and Kyra and we knew what each other wanted without having to always speak. I assumed this was typical of a stay at home mother/only child living situation. We only had each other, with a constant change in new and returning cast members thrown in for good measure.

I took notice when she didn't play with other children. She would gladly sit beside another child and play next to them, but never really had a true interaction with them. I'd take her to a park filled with toddlers and mine would be the one who wanted to swing for 45 minutes, watching, always watching, until it was only the two of us left. Only then would she request to stop swinging to run like a caged animal around the park. Climbing, sliding, running and jumping.

She has a friend her age whom she has regular play dates with, whom she always played side by side. There was one little girl Kyra took a liking to, she was a year older then Kyra. We'd have once a week play dates where this little girl was present. Whenever Kyra attempted to play with her, the little girl refused to play with her. Fussing, snatching toys, running to her mother because how dare someone interrupt her play. Typical 2 year old behavior. Other then those attempts, Kyra never cared to play with someone other then myself. Because she was passive and shy.

Also quite typical, the ability to ignore Mommy at all costs. Kyra, look over here! Nothing. Kyra, what's that? No response. Kyra, I love you! Silence. Kyra, Can Mommy have a kiss? "No." A response. Good! She's not deaf.

Kyra reads, for hours and hours at a time. Most of my day is spent reading book after book until I get cotton mouth. When I'm completely exhausted from reading I then entice her with attempts to play with her toys. Lego's, she likes. Eating crayons, she likes. Making a mess, she likes. Cleaning up any mess, she likes. Cooking with Mommy, she loves. Doing any of the following on her own, hmmm, its just so much better when she can mimic whatever I'm doing. Imaginative play just isn't in her cards yet, I tell myself.

Strangers. She wasn't fond of them. Check out lady at Wal-Mart, waitress at a restaurant, lovely old couple passing by. They all made sweet comments, trying so very hard to get one of those cute toddler responses that just makes any one's day. Kyra gives them nothing. No smile, not words, not even a glance in their general direction. What the hell is so interesting on the floor, I would ask myself.

Her second birthday comes. I anticipate hearing that she had gained some weight and Way to go! Keep up the good work but she still needs to gain a few more pounds to satisfy me, which I hear. Then comes the questions. I know what they're looking for, a similar set of questions were asked at her 18 month appointment. Most of which were all answered "yes", but there were a few "no". Nothing serious, nothing to worry about. Not so much so this time around. I remember the questions, vivid even today, I still wonder if I said something wrong.

Does she play with her toys? Yes
Does she use her imagination? Um, ya, I guess.
Does she do things like feed her dolls, talk to them, do this and do that with them? No. Well, ya, if I do it with her.
But not on her own? Not usually.
What about when she's playing with other children? Well, we've spent the summer in the sticks and she hasn't had many kids to play with until this last two months we've been home.
But how does she play with others? She'll play beside them, but not with them. She's shy.
Does she look people in the eye when she talks to them? Um, no. She's pretty shy, she'll just look at the ground or bury her head in my neck.
Where's Daddy? He's on deployment.
When does he come back? In a week.
How long has he been gone? 6 months.
What has her last 6 months been like? Did you stay at home for most of it? No. We traveled a lot. (talking more to Kyra) We saw lots of her family in the Bible Belt, the Sunshine State. We went to the Land of the CornHuskers for two weeks.
How long were you gone? 4 months.
And there was probably a revolving door of family members and new people? Ya. She usually doesn't get to see them but once a year.

The pediatrician starts to perform the typical round of well baby stuff. Listens to Kyra's belly. Looks in her ears, mouth and eyes. Checks her growth charts. Tries to make small talk with Kyra. Gives her a flavored tongue depressor that Kyra, surprisingly, looks right at her and accepts.

Does she talk? Yep.
How many words will she say in a sentence? Two.
Does she ever have three or four word sentences? Not yet, but I hear it should be any time now.
Has she ever said three or four words together before? Um, she'll mimic 3 words from something I say. But she doesn't offer it on her own.
You say Daddy is coming home in a week? Yes, and we can hardly wait. Can we Krya?
Okay. I want to brace you for the worst but give you hope for the best. She might have possible Autism. It sounds like she's had a crazy summer with Daddy suddenly leaving, you both traveling so much. Her life in these last 6 months has been a whirl wind for her and I think she might have just been caught up for that. However, by the time they turn two they should be using their imagination more, they should be past playing beside others and be actively playing with children their own age. We also tend to see them easily using 3 and 4 word sentences by this age. These can all be early signs of Autism but it' difficult to diagnose. In the Navy it's hard on younger children when the one parent is there one day and the next time they wake up a Daddy has left for another mission. Combine that with a fast paced summer, I would like to believe this is why Kyra is delayed with many of her social skills. But just in case, keep a close eye on her progress when her Daddy returns and the months that follow. If she doesn't improve within 6 months, please return for a follow up. Otherwise we don't need to see her again until she's 3.

My heart sank. I never felt so alone in the world. I'm sure I told my mother in the time before the boat came home but I have no memory of the conversation.

I watched her like a hawk when Jeremy walked off the boat. I put her down on the pier, pointed him out and gave her a good shove in his direction. Jeremy bent down, gave her a hug, asked her "Did you miss Daddy?" and Kyra, never looking at him, pointed to the submarine and spoke, "Daddy's boat." I could have cried right then and there. She spoke to her father. She remembers him!

I told Jer that night about everything her pediatrician said. He all but rolls his eyes at me and says something along the lines that he doesn't think she's autistic. He was never mean or rude, but in utter denial that this could be a possibility. The denial, I'm certain, was his front for blaming himself. If he hadn't left on deployment, none of this might not have happened.

Jer's parents came in for a visit. On one outing to the park, Kyra swinging, watching the other children play, I told my MIL and BIL what was going on. They both said it wasn't true and I should find another pediatrician. Kyra was just fine, she didn't have Autism, she just does things in her own time. This from a woman who hasn't seen Kyra in a year, and a man who hasn't seen her since the day she was born.

Really, why would you trust the pediatrician who has seen her on a regular basis or the mother who has left her for only one week in the last year? Sure, we must be loosing our minds, over exaggerating.

Alone. I had all these "family" members around me but I was totally and completely alone.

Late at night I would Google my way through Autism. All the early warning signs, watch videos comparing an Autistic child to a "normal" child, read the differences in many spectrums of Autism. Every new check list of signs I came across, half the boxes were marked. Half.

A month after "possible Autism" I saw my first glimmer of hope. Kyra spoke her first sentence. Jeremy and I were thrilled and no one understood why. No one celebrated with us. That was okay though, because the sentences didn't stop there. Slowly, at first. Then more and more. Before we knew it sentences were a part of her every day life.

I enrolled Kyra into as many classes as we could afford. Dance, gymnastics, swimming, toddler time at the library, anything to get her socialized. The week before Thanksgiving I saw my second sign, Kyra ran over to a group of 3 girls in her gym class and started kicking a ball back and forth. When they ran to a cylinder rolling thingy Kyra ran too, together they rolled this cylinder thing back and forth. I smiled and watched, silently hoping no one would interrupt her play.

A week before Christmas, Jeremy and I had our first dinner out sans Kyra. It was supposed to be my birthday dinner, but the topic of conversation for the hour and a half surrounded around Kyra and "possible Autism." We went home that night and I showed him all the research I had done and he finally agreed, its a possibility. But we had hope. It had only been three months and already she was starting to speak sentences and playing more easily with other children. We'd take her to the park and the swings were slowly not being used as a place to watch others, but more a few minutes to observe before she hoped off to run to slide.

January comes and another milestone. When we say "Kyra, look over there!" she looks. When we ask "Kyra, what's that?" and she answers. The biggest bit came at the end of January when one morning she climbed in bed with me. As I pretended to still be asleep she climbed over the top of me and planted a kiss on my lips. I opened my eyes, smiled brightly and said my usual morning greeting of "Hi, beautiful! Are you bright eyed and bushy tailed?" Every morning since, she wakes me up with a kiss. How I hope this morning ritual never grows old for her.

The last weeks in February brought our latest bit of good news. Kyra began to acknowledge strangers. No more is the gazing at the floor, but she looks people in the eye, smiles and occasionally she'll answer questions and proceed to ham things up.

Even better, she's using her imagination. She started out pretending to put rocks in her cereal. With no warning, no idea what brought this on, she started pretending. When my MIL came for another visit, Kyra continued with the pretend play. She often has a "little baby alligator- wah wah" in her hand. She'd pet it and tell you it was sleeping, then pick up one for me, then MIL. My MIL looked right at me and said, "See, I told you she was fine. She's not Autistic."

So there you go. Our worries that Kyra might have "possible Autism" is no longer. She still doesn't always talk to strangers, but she's looking at them now. She still doesn't listen to me when I call her name 18,000 times, but my presence is acknowledged. She doesn't feed her babies, play Kitchen on her own for more then 10 minutes, and generally just doesn't play on her own- with the exception of building with Lego's and reading books, but she has pet alligators, puppies and today, caterpillars.

Really, if you spent every day- morning, night, and noon- with this little ray of sunshine, then you'd see the differences she's made. Even though I'm so very proud of her, I can't help but blame myself for the way things panned out.

If only I hadn't left New England the same day her Daddy disappeared from her world.
If only I wouldn't had traveled so much. All this heart ache might, just maybe, could have been avoided if I just thought.
If only, if only, if only....

Then I find myself throwing that pity party and realize I'm not psychic. I did what I thought was best. And as a mother, that's all I can do.

The hardest part of all this wasn't the "possible Autism" but the being alone. The few people I tried to confide in didn't even consider the possible, but shoved it off. Dismissed the opinion of a pediatrician I trusted, dismissed what I've seen, what I knew, what I researched. Because of them, I was alone in my fight to help Kyra catch up to "normal" all over again.

Remember that. Then next time someone comes to you with a possible, don't shove it off. Don't leave them alone. Alone is the hardest place to be when you're dealing with possible.


  1. Wow. Sorry. I never knew it bothered you this much. But, I guess it would any mother right?

    I just hate labels- and I know with Zoey it used to infuriate me to no end when doctors would "label" her.

    I am glad Kyra's making vast improvments- I LOVE chatting with her on the phone and our time at Sea World.

    Here's to hoping the next year shows even more improvments.

    Don't beat yourself up over what you did wrong- there is no right/wrong in these cases. I would have done the same thing- I'd be lost if Duane had to deploy somewhere.

    (((hugs)) You're a great Mom and Kyra is a great kid!!

  2. Good for you for not brushing it off Alicia!!! I know it is terribly difficult when your pedi tells you something and you are worried sick and everyone else just thinks nothing of it!! I am glad you did research and worked with her!! Kyra is a great kiddo and you have done a marvelous job! As for any of us who have survived deployment you can't blame yourself for leaving, it might have been the same road if you had stayed. Isabella has a "possible" hole in her heart! It worries me sick and nobody else seems to think it is a big deal, this "could" be why she is so small and not gaining but we are not sure, but even though everyone else brushes it off I think it is my job as a Mom to stay on top of it so I semi know where you are coming from. Anyhow I was catching up on all your posts we have been out of town! Hope VA is treating you well, remeber you can always come here when the boat is gone or even when they are home and if you ever have anymore possible's I am only a phone call away I won't brush you off I promise!!! Take care and I will talk to you soon.

  3. i'm sniffing back tears knowing you had to go through all this alone. i had no idea of the "possible" or i would have been right there googling with you. i hope there never is a next time for this kind of situation, but i'm right around the corner if there is.

    now that you've opened up about it, i can look back and see what had you so scared. she HAS improved by leaps and bounds (and just in time). perhaps she knew her 6 months was coming up and figured she better get on it and prove to you that not only is she "normal" but she's outstanding!! lovins to you both!

  4. Wow, I had no idea. I've been around autistic children about her age, and I never would have tied Kyra to them. She didn't seem the type to withdraw from stimulus or company, which is the trait that I always noticed.

    If something threatens to devastate you again(God grant that it won't), Alicia, please tell us (at least via email). You shouldn't have to go through something like this again.

    Praise the Lord, she's perfect.

  5. As a teacher who often deals with students of Autism, it is often a common thing for parents not to realize. I am very glad that Kyra is slowing taking new steps. Please do not blame yourself! There is no true cause and they are still trying to find how people become autistic. My sister may be in the same boat with the youngest. But I will tell you the same thing I told her, even if he/she does turn out to be autistic it is only slightly and she/he will learn how to overcome it. My favorite student while I student taught was Autistic and I will never forgot him. So please don't blame yourself, you are a wonderful mother and trust me ,Kyra will be very happy when she remembers the summer travel and knows that she was not at home sitting doing nothing. These are memories she will carry with herself forever. If you ever want to talk about dealing with the possibility, feel free to call. I know a bit about it and can help you!

  6. Okay, so I know I'm late on this, but I cried so hard when I read it that I couldn't even try to comment right then. I'm so sorry that you went through this alone. Please don't ever do that again. You are a fantastic mom Alicia. One of the best I know in fact, and I have learned alot from you. This mom thing is hard stuff, and I can't imagine what you were going through. I'm so glad that Kyra and you are doing better now. Thos last three sentences are full of very good advice. Thank you for letting us in on all that has been going on.

  7. Hello. I was browsing other stay at home mom's blogs and came across yours. You have such a way with words that makes it easy and enjoyable to read. I have had similar issues with my son, but mine were with people I did not know. He just turned 5, but when he was 2-4, I have had people who really didn't know my son make assumptions about him. It made me feel so insecure about who he was as an individual. He also did not speak much, would rather play on his own, and would sit and spin a circle for hours and be at peace with it. However, he just kept progressing and progressing with his language (which is not something you see with children with Autism). The comments kept coming and I wanted to hurt someone. When he turned 4, I got him in speech therapy at his preschool and his social skills are getting so much better. I should have just trusted my own instincts and embraced him as an individual. It sounds like you are doing that! Your daughter is beautiful and full of her OWN personality! You are such a proud Mama and you should be! :) :)