Monday, December 17, 2007

In translation

My sister had surgery last week and has been staying with my parents (because her insurance wouldn't approve a post-op stay) so they could help take care of her ad she could have a bit of child-free recuperation time. Her husband (fiancee? I'm not really sure and it is a long story that is not mien to blog) is in the symphony's Christmas production, so last night my parents and sister went to see the show. We watched my niece so they could attend together.

Josh and I are always a little reluctant to add another kid into the mix, because we are fairly structured and with someone else's child in the equation the schedule is topsy-turvy, but it went smashingly. I especially enjoyed it because Lita (pseudonym) is only 3 months older than KayTar and they get along really well, it is worth a bit of schedule upset for fun like that. Also, it helps me to watch a typical child KayTar's age in action, because it is a good point of reference with her behavior. Yes, I know, comparisons are not necessary, but really? They are. For me, I like to know. A year ago, I didn't want to know. You might even say I ran from the knowledge. Now it is really helpful, because when your child develops atypically, you forget what the typical looks like.

Oh my, KayTar was a good hostess, in her KayTaresque way. She asked questions that are silly to other kids, they don't understand quite what she means, but she is attempting to reach out, to connect, and that is a good thing. Questions like, "Lita, how you watchin?" when they were watching Franklin's Christmas together. It means, "How are you enjoying the movie?" and it is one of those catch-all phrases she uses over and over. Like, "Mommy, how you reenin?" or "Daddy, how you sittin?" or "BubTar, how you playin?" When she wanted to share (which was surprisingly often) she would pull out the stock phrase, "Have it please." and thrust whatever the object she was offering towards Lita. Mostly she just mimicked Lita and BubTar and screamed in delight. Oh, the delighted screaming, it was plentiful.

BubTar was thrilled to have a spontaneous playmate, rather than solely a mimic. He also was on quite the power high from being The Oldest. You see when he is around other kids, he is never The Oldest. There are older cousins, older friends, and he is always the First Mate rather than the Captain. And did he ever like being the Captain for a change. He enjoyed creating scenarios and having Lita join in of her own will and actions, rather than merely a shadow of his own. KayTar, of course, mimicked one of the other participants blending into the action just fine. I wonder if this propensity for mimicking is lasting, here for the long haul. I wonder if it will cause problems for her once she hits school-age, being called copycat and the like, even though it is what comes naturally to her and she doesn't understand the other ways to relate and interact. It isn't fruitful to wonder about these things, but I do. The days of her blending into the background due to her mimicry are limited and I know one day, if it continues, it will cause the opposite reaction, standing out from the crowd. But for now, it facilitates her social life quite well, because most children her age are delighted to have a shadow, to be the one in control for a change. It suits her well at this point.

Lately I view everything through the Help or Hurt At The District Eval glasses. Will her articulation impede her ability to get speech therapy? Will the therapist evaluating her be aware of how many stock phrases and scripts she is using? Is her speech noticeably different from another child of her same age? Will they be able to see her mimicking in action? Although there are glaring differences between her when she is alongside her peers, I wonder if the same can be observed in a one hour time slot when she is the only child in the room. We see it, we recognize it, but we are with her constantly and it is undeniable after you've been with her for a few hours. I think that even here, in this space, I have difficulty conveying just how different her speech and relation to others is. It is hard to put words to, to draw lines around. She is a tiny chameleon and she mimics her way into the background. Her behavior appears just typical enough to give the illusion she is functioning at a normal level. A year ago, she was so delayed that it was undeniable. I didn't have to draw attention to it, because I had a nearly two year old who was using a walker and speaking purely in sign language. Now, her gaps are not nearly so obvious.

She walks, so people assume she is caught up physically. No one thinks about things like running or jumping or climbing. Most people wouldn't realize that she can't walk on our slanted driveway or across our backyard without falling, that she falls for no reason at times.

She speaks, clearly even, so she must be caught up verbally. No one realizes that much of her speech is memorized, cut and pasted from other conversations, rote. No one thinks that a child can speak so well without understanding her own words.

She is eating table food, so her sensory issues must be gone, her feeding troubles in the past. They don't realize that we still have many days like yesterday, days where she eats two yogurts and a few bites of mashed potatoes. No one realizes that her table food diet consists solely of square-crackers, dry toast, thin chicken nuggets, one kind of yogurt, and mashed potatoes, if she's feeling wild. No one realizes that some days she still refuses everything but a small serving of yogurt, or everything but a few bites of dry toast.

She looks healthy, so her weight must no longer be an struggle. No one knows how closely we have to watch it, to supplement it, to control it. No one knows how quickly she loses the gained ground if we aren't vigilant. All kids are picky, they say. Kids will eat when they are hungry, they say. She won't starve herself, they say. Except she isn't just picky, she doesn't feel hunger many times, and she will indeed starve herself, without a second thought.

And so I talk about these things, repeatedly, endlessly, because to look at her these days, you might not see it. She looks to be a healthy, mostly normal, nearly three year old little girl at a glance and it makes me so proud. She's come so far from the obvious disabilities of last year. She has grown and changed and become this sufficient little girl, even if it is in her own, very different way. But now her struggles hide, deceptively, sometimes disappearing altogether in her sufficient little hands, and so I have to point at them, "Look there. See that? It isn't quite right." I don't relish the task, sometimes it makes me feel ungrateful or not proud enough of her, because she has come so far and still I focus on the gaps. But I have to do it. I have to advocate for her, to speak out about these things, to find someone who can help her through them, to help her become even more sufficient in herself and in her abilities and perhaps discover new ones along the way. She is a foreigner in this land of sameness, in this land where everyone seems to function one way. She is an anomaly, an adorable, brilliant, capable, delightful anomaly. I don't want to change her, not for one moment. I just want to be sure that here, in this place where difference is not always viewed as an asset, she is given every opportunity to succeed. So I talk about these things, endlessly and always, rehearsing them, so I can keep them clear in my own mind, these blurred lines of difference, so I am always ready to explain them, to help people understand her, to help people help her. Because when you are Different in the Land of Sameness, you need someone to translate for you, at least for a little while.

Have it, please.




Smallish postscript update: Her deaf co-op teacher also feels that she has hyperlexia. I'm waiting on a return call from a secondary local SLP to try and get formal diagnosis before the Transfer, which I've started to think of in capitalized terms. Two months is not long, and then my baby will be three and in school. The help she receives will be decided by strangers. I find it all as unsettling as I do exciting, and thus it is all looming largely in my mind. The Evaluation. The IEP. The Transfer. A giant snowball turned avalanche of the coming months. But today her deaf co-op teacher also told me that regardless of whether she is accepted into the PPCD program, she is eligible to be in the 1/2 day 5 day per week Hearing Impaired classroom our district offers, which means no matter the results, she will have access to speech therapy and likely an FM system for her aid. That in itself, is a nice long sigh of relief. The rest (as they say in a song I find incredibly irritating) is still unwritten.

30 comments:

Aliki2006 said...

Oh, you put this so well. So very well.

Hugs to you...

Becca said...

I wish you well. Best of luck with getting her the help she needs!

Karen said...

listen, try not to feel bad - you are her very best advocate and her best shot at getting everything she needs. You are doing the job she needs you most to do - and of course you are pleased with her progress as all mothers are, but you have more on your plate than that.
For what it is worth, we are having a very good experience in "the system" with IEP and therapists of a few sorts. I hope you also get the very best of help for your little one.

Don Mills Diva said...

This was a really thoughtful post. Sounds like she is coming along beautifully and you are a wondreful advocate.

InTheFastLane said...

You are making a huge difference in your little girl's life. You keep advocating to the best of your ability. Her advances only prove that you are doing the right thing.

AJsMom said...

She has improved so dramatically and is a truly amazing little girl. I think I am having the opposite battle with myself -- trying to fight the urge to tell everyone about AJ's beginnings or to make excuses for things. We have always tried so hard to just treat him like any other little boy. And I want people to see him that way, too.

Julie Pippert said...

It is, very plainly, simply you advocating for her. Not ungrateful or not proud. My goodness, your pride and love is very clear. I am wowed at her progress, but want to see her get the good help she has been getting that got her to this point, so that she can keep achieving.

Julie
Using My Words

Amy said...

As a parent, you are your child's adovacte. You are her voice. And Kyla you are doing an amazing job.

Beck said...

We face a lot of the same challenges - the Baby's weight is now at a low-but-normal point and what people don't see is the multiple cans of Pediasure STILL needed to keep her there, the careful monitoring of everything that she does and does not eat. It's hard when a lot of their problems are invisibile to outsiders and then you lack some essential types of support.
Sigh.

flutter said...

I just love her.

and you.

formerly ddm (Sonia) said...

Bugga is very similar to KayTar in that at first glance, people think he's a typically developing child. So they ask him a question and he smiles, but says nothing. So they ask how old he is, and when I answer, they say "Oooooohh....." and walk away. I'm only just getting to the point (he's 7 now) where it doesn't bother me. I no longer feel like I owe every person we meet an explanation. And like KayTar, people want Bugga to be 'all better now' because he had ONE good day with a sensory thing. OH how I wish it were that easy!

The first year of school is scary for US. But I'll bet you that KayTar takes off like a shot and loves going to school. Sure, the folks making those decisions at first are strangers, but you will come to know them very well, and understand rather quickly that they are there to offer KayTar as much help as they can.

(((HUGS))) Kyla, you're doing a great job with your kids. If you need to talk, I'm an e-mail away.

carrie said...

Well written indeed Kyla. You and she have come so far in such a little time, and although to some, she's seems perfectly "normal" I think that is your biggest challenge now - making sure that she gets what she needs, and nothing - absolutely nothing - gets overlooked.

You're doing it, friend. You're doing it so well.

Oh, The Joys said...

Gosh. You just have so much to manage. I am thinking of you.

xo,
J

Junie's Blog said...

oh I'm so happy to hear about the speech therapy and FM system! You do have an amazingly complex little girl on your hands . . . wouldn't it be nice if for a change society conformed to her instead of the other way around?

Lisa b said...

Kyla you do a great job advocating for your amazing little girl.
I know what you mean about the comparison. There was a sibling the same age as Julia at our developmental drop-in last week. The kid a) sat up, b) stared at me and c) played with a toy using both hands. It didn't make me feel badly, it just made it more clear to me where Julia needs to be developmentally.

Jen M. said...

Wow. Just - wow.

I hate it when people write off issues our kids may have with the "Oh, they'll just grow out of it" or what have you.

I really hate that.

natalie said...

Kyla,

I'm wearing my teacher hat, so be prepared before I start.

Reading your words is so immediately refreashing. You are so REAL. So often in an IEP meeting, I listen to parents who are completely out of touch with the reality for their child. They either think that there is nothing wrong with their child, that their child will "grow out of" their educational situation or that their child is destined to be "special" forever and want far more services than we can provide. I think I'm safe to say that only 1 out of every 5 or 6 meetings do I find a parent who understands their child's strengths and weaknesses, limitations, relationships to peers, etc.

You are 100% correct that you are your child's advocate. Fight for her whenever you must. I am always so thankful for parents who fight for their kids rather than leave all the decisions to us, the educational team. Sure, I might know more about developmentally appropriate practices or how a 7/8 year old learns to regroup in math, but EVERY PARENT KNOWS HIS OR HER CHILD MUCH BETTER THAN I DO. You are doing everything exactly right. I am eager for you all...to find out how this will work for you and how KayTar will progress after the Transfer.

Okay, off the my teacher-box now.

Still praying for Jakie and checking in with his family often. Please update if you hear anything.

jen said...

but everyone, and i mean everyone sees her mother, full of grace, strong as a tiger, vigilant as a hawk.

everyone sees the beauty of her mother.

painted maypole said...

"delighted screaming"

excellent.

Em said...

Willow's OT always points this out to me... she'll say "oh she's made great progress, but that makes our job harder" because the problem areas don't stand out so much... and W look more and more normal as time goes on ... and yet, the differences stand out more too in some ways because they can no longer be explained away ... so she talks a bit funny, behaves a little strangely... some people get it straight away (esp. those who work with kids) others need time to see the differences...

anyway, as always, i understand you too well :)

with love,

emxx

Family Adventure said...

You have to draw attention to her *anomalies* precisely because you are so proud of her and because you see her potential. That's all.

I think you're just as amazing as your little daughter.

Heidi

nomotherearth said...

I've said it before but I'll say it again. She is so lucky to have you. And you her.

Chaotic Joy said...

You do have to be her advocate, but with a post like this it is obvious that you are a powerful one. What could they ask that you do not know.

And "Have it please". Oooof. The sweetness of that phrase. It's so adorable.

JSmith5780 said...

I could have written these exact words about my son. He is diagnosed PDD-NOS. Last year he started integrated preschool at 2.5. By the end of the school year he "hid" his disabilities/gaps so well they pulled most programming. I gave it one month and was back in a meeting with the district saying, it took one month and he failed...see these gaps and these? I tried to tell you they were there and you didn't listen. Once month without services and we lost 3+ months of development. We ended up getting more services than he had to begin with!

Know what you want, and don't give in. If the meeting is NOT going your way, table the meeting, go home, collect more educational/therapy ammo and go back with supporting evidence with why KayTar needs this or that. You'll get it, you are a great advocate.

Mama Drama Jenny said...

Oh Kyla, you have such an amazing way with words. You always make me tear up.

If I didn't know Kaytar's background I would not have noticed that there was anything different about her from the average 3 year old. In time her mimicry might become more noticeable or it might go away entirely. Regardless, she will be loved simply for her sweet, smiling, happy ways and will find a way to fit in. Kids are so resilient.

Mad Hatter said...

I'm always blown away by her cleverness, you know: her sheer determination to adjust to the awkward conventions of her world and her bombastic success when it comes to fitting in.

dawn224 said...

In my experience - a good DHOH (DHH depending on your districts acronym for Deaf and Hard of Hearing Teacher) is just as good as an SLP - the language training seems to be similar and they both are on teams for kiddos with multiple issues.

You are doing well. You observe things in a concrete fashion and give measurable information. You are the parent we like to work with - so much easier than, say, the parent I had who thought her kiddo was mentally contemplating the abstract concept of governments when he... well... so wasn't....

slouching mom said...

brilliant. perceptive. loving.

what a post, kyla.
what a mom you are.

~aj~ said...

We are all so proud of KayTar and the amazing progress she has made this past year. She's come such a long way. I can't imagine what the future holds as she gets the therapy that she needs.

You are doing a terrific job, Kyla, as her mentor, her advocate and her mother. Bravo for you!

Hetha said...

You and Kaytar never cease to amaze me Kyla. I'm also continously blown away by how parallel our lives seem to be at times. I relate to every word on this post but could not have articulated it nearly as well, it's almost therapy for me to read your writing.