Sunday, January 13, 2008

Breathe in, breathe out, tell me all of your doubts

I feel as though I am on the edge of a precipice, yet frozen in this moment. There are important changes coming, and yet, I cannot fathom anything past today, anything past the endless cyclical sicknesses that have plagued our home this year. Tomorrow is officially my first day of classes, although my live, in-person classes don't start until Tuesday. I have no idea as to how this new challenge is going to fit into an already full life, I can't even devote the brain power to project a version of this future that is nearly the present.

As I've said many times, KayTar's district transition is soon. On Saturday night, Josh and I went out on a date. He asked me about the transition and logistics, because honestly, we don't always talk about these things. At the end of the day, we are happy to fall into bed together and watch TV or otherwise occupy ourselves. At the end of the day, as we listen for the sounds of vomit over KayTar's monitor, the very last thing I want to discuss is the ins and outs of KayTar business. He's an involved dad, don't get me wrong, but KayTar's care and schedule is my full time job. I'm her administrative assistant, if you will. I was describing the process to him and he stopped me and said, "No, I don't mean that. I mean, how is it going to WORK? How are you going to drop her off with strangers for three hours a day in a new place? She hates new people." And it knocked the wind out of me completely. Good God, I have been so occupied with the thought of qualifications and services that I haven't put an ounce of thought into how she is going to handle this. It took her 6 months to stop screaming through the entirety of each session of physical therapy. That was just one new person, with me present even. How the hell is she going to handle this? And I was up for hours thinking about it that night. How did I miss this part? How have I not planned it? Prepared for it? We haven't attended church in over a year because KayTar would get so upset in the nursery that she vomited on herself and the worker without fail. I'm supposed to leave her with strangers for several hours each day? I just don't know.

And yet, KayTar hasn't seen a therapist in close to a month, due to holidays and illnesses. Illnesses. She isn't in daycare, she isn't exposed to other children frequently and still, we are almost always sick. Instead of the germs traveling home through BubTar, she will be directly exposed to them. With as often as she is ill already, I can't fathom that increasing. Even if she qualifies for services, when will she attend to get them? Is it going to be difficult to bounce between the classroom for a week here and home a week there due to fevers and strep and respiratory crud and such? And her episodes? She's awake until midnight quite frequently, because she just can't sleep earlier, how will she wake early enough for school each day? We have a strict policy on not waking her before she is ready (unless there is a necessary doctor's appointment) because she had harder days when we do. More light sensitivity, higher episode predisposition, things like that. Again, I don't know how she will handle this sort of transition and schedule. We're very respectful of her boundaries and she thrives...when she's forced into a situation outside of those boundaries, the results are not always so pleasant. When I was working and she was in daycare, I NEVER got through a week without being called to the daycare to pick her up due to illness or without having to call in sick. And this was before we knew the whole story.

We are also approaching an attempt to wean her from the bottle. She has been gnawing on the nipples and I worry it isn't exactly safe for her to continue drinking from it. I can't explain how this transition worries me. The child has a will of steel. You've seen her stand her ground, she'll call your bluff every time. Earlier this year her bottle manufacturers changed their nipples. She stopped drinking, just because the nipple was a little different. I had to get friends from other areas of the country to look for bottles for her with the "right" nipple. We stockpiled and were saved. She doesn't grasp concepts like the Bottle Fairy and various anecdotes that can be used to help transition typical children, she cant understand the reason she needs to give it up at all. She is not one of the "she'll drink when she's thirsty" kids. Just like she's not the "she'll eat when she's hungry, she won't starve herself" kids. At least 75% of her calories in a day come through the bottle in the form of milk or Pediasure, mostly. Some days she eats only a single jar of baby food, sometimes as little as 35 calories. 35 CALORIES IN A DAY. When we were on vacation she had a single yogurt in 3 full days. If it wasn't for her hearty drinking, she would be in much sadder shape. I hate, hate, hate to rock this boat at all. It feels like a gamble and I'm not much of a risk taker. I don't like playing the odds, especially when losing isn't an option.

Things are so manageable with her most days, our life so routine, so reliable, that it is easy to forget how precarious it can be. Transition is the enemy of routine and routine is what gets us through. We've learned how to function here, within these parameters, and I think a season of relearning is approaching. New routines, readjustments, new challenges. And still, here we sit, the sick and feverish little dear asleep next to me in her small papasan...living every day as though it is the same.

36 comments:

Anonymous said...

Like I have said before.. I think you are an amazing Mother. You & Josh have done such a great job. Katie is an amazing little girl.
Praying for you daily, Cori

alejna said...

Oh, Kyla. I wish I had some words of wisdom to offer. It sounds like you will have some very hards days ahead with that transition. You have made it through so much. I know that, somehow, you'll get through this next stage, too.

KayTar looks so content and peaceful sleeping in that photo. What a beautiful girl.

Hetha said...

You truly astound me, daily. I know there will rough times ahead, but I know you have the fortitude to make this work if that is what you wish. You're in my thoughts and prayers.

InTheFastLane said...

And then, you look at that sweet face and you know that you will move forward, because that is what you have to do. And some how, you all will make it through, because you have to. One day at a time.

Aliki2006 said...

I'm sorry you're going through all this, I really am. It reminds me a bit of the agony we went through trying to decide whether to start T. in preschool when she was 10 months old--in the end we hired a regular babysitter to be with her three days/week while I taught. She was so little, could not walk yet (didn't until 16 months), had episodes, and was always teetering on the brink of something. When we did take the plunge at 18 months and enroll her in a two day preschool I was a mess of nerves as well. But she surprised us! She thrived and did wonderfully and the stars were aligned just right so she only had three episodes during that whole year that affected her school.

Trust your instincts, but sometimes also you have to hold your breath and test the waters. I don't know--I wish I had more advice to offer.

Hugs to you all...

Janet said...

I get the sense that you wrote this post for the catharsis of it all. I don't have any advice. Just hugs from Canada.

Don Mills Diva said...

Oh Kyla - I wish I could say something to put you or Kaytar at ease. Just know that you are an inspiration to many people and we are all sending you strength.

Kristin said...

You did a great job putting all that into words...yet I'm sure writing it didn't help all that much.

Kyla, I just don't know...I know you are doing such a GREAT job and I know you will make a great nurse one day.

PJ said...

I have no practical advice to give, I haven't walked your road. I'll pray for you.

But do remember, God has led you this far. He won't leave you now. You've done an amazing job. Your faith and courage are phenomenal. For next step, God won't fail. There will be light ENOUGH for you to find the way.

Blessings! and my prayers are with you!

Chaotic Joy said...

I can feel your need to get this out in these words. Your mind wrestling with the worry and wanting to vent. I don't know how you will get through this Kyla, the transition may well be awful just as you say. But I know you will get through it and you will do as you always have, what is best for Kaytar. Kaytar has made some AMAZING strides this year, and she may surprise you again.

I am praying for Kyla, for Kaytar's transition and for the peace you so desperately need.

painted maypole said...

i began by thinking "a date... jealous me" but then my heart just went out to you and kaytar.

flutter said...

you know, there really isn't a time that I can remember since knowing you that I haven't been totally in awe of your grace.

jen said...

exactly what flutter said.

nomotherearth said...

All you can do is try, right? And see what happens? My thoughts will be with you.

Family Adventure said...

Thinking of you and your little girl as you face this transition.

Heidi

Gretchen said...

Wow, Kyla. Keeping you in my prayers--I wish I had some good advice for you. Keep hanging in there.

JSmith5780 said...

Our son had major sleep issues...getting to sleep, staying asleep, etc. These sleep issues had a profound impact on his ability to learn and function throughout the day. We used Melatonin for a long time (2mg as recommend by his neurologist- some neuros say as high as 10mg for autistic kids is acceptable). It helped him fall asleep at a reasonable time. With better sleep came better daytime function/coping and better learning.

When he started school we found that the routine tired him out more and we have had to rely on the Melatonin far less. GNC makes a "meltable" tab that you stick under the child's tongue. They are cherry flavored and almost seem a little like candy (not that I would EVER call it that to him). Just a thought. For me it was a godsend. The bedtime routine went from a 3 hour "project" to about 30 mins!

As for the vomiting, transitions, etc. Is this a special needs school she'll be attending, I assume? They should be well versed in handling that. They expect it. Good luck!

Becca said...

I am so sorry this is so hard. I'll be thinking about you and hoping she surprises you and thrives in the new environment.

Mama Drama Jenny, the Bloggess said...

Your life is so very complicated. I wish things were so much simpler for you.

Kaytar astounds you each day. Maybe her transition into this new routine will astound you as well.

Julie said...

I can feel the stress and anxiety in your words. Oh Kyla, I am praying everything will work out for all of you. That you will find a new routine and a new normal without too many problems. You are so brilliant and you *have* to do this, you will make a great nurse, you will figure it all out. Kisses to your 'tars.

~aj~ said...

Wow Kyla...I don't even know what to say. It seems like I know all the bits and pieces about KayTar, but when you lay it all out like that, it's overwhelming. No wonder you weren't able to sleep the other night!

My only advice is that you'll never know how things are going to go until you give it a try. Maybe KayTar will surprise everyone with some of these transitions? Maybe it will go better than you ever dreamed? I have no doubt it will be difficult for you and her, but you are both amazing and I can totally see both of you thriving.

Christine said...

once, when things seemed so scary to me, you said just what this title says: breathe.

you can do this, honey. breathe. and again. and again.

i don't have answers at all, and the fears are real and they are scary, but know this: you can and will do it.

you can.

xoxo



Running on empty

amanda said...

See how your eval goes- You may be able to get wrap around services in the home. Fight for them. It makes an amazing difference in how the child reacts to a new person in their own environment. You can do this, remember to take care of you as well as your little ones. I will be thinking of you.

crazymumma said...

You know, these changes are HUGE. But you will not know unless you at least try, and you will kick yourself if you do not try.

That said. It will be hard for her, but children, as you know, are resilient.

And I somehow think that she will adjust to the new people more quickly WITHOUT you there. As hard as it is going to be, I applaud your leap into the unknown.

And I will ask about those things you mentioned over my way. And here is a health suggestion back at you. Have you tested for allergies? Could he ongoing illnesses be because of a depressed system?

Jen M. said...

She looks so precious sleeping there.

Good luck to you in these days ahead - it really sounds like you'll need it.

ewe are here said...

Hugs. Just hugs.

Beck said...

Look at that sweet little girl.
I know that you'll help her through whatever needs to happen. It's hard and it's unfair, but I know you can do it.

Katie said...

"We're very respectful of her boundaries and she thrives...when she's forced into a situation outside of those boundaries, the results are not always so pleasant."

That is a glorious line that reveals just how well you know your child. You are her constant. If there is one thing life with Livie has taught me, it's that as long as I am still there (even if "there" changes), she can find a way to pull through. So will your Kaytar.

Mad Hatter said...

Kyla,
This will be a rough time, no doubt about it but we will all be here listening. As for the bottles, you might want to wait until she's had a chance to transition before you try phasing them out. I know that there are risks for her in doing this but with everything else that's going on it might be just too overwhelming for all of you.

Julie Pippert said...

((Kyla))

It will be a challenge. I'm sorry about that.

You haven't failed her; you've done beautifully by her.

I have full faith in you. That aside? I'm here if you need me.

natalie said...

I wish I had something to offer you...some words of wisdom. The teacher in me says, "Jump in with two feed and let the cards fall. She WILL adjust." But I'm not KayTar's mother. I'm not the one that will face the complete struggle at home. Could you perhaps start slowly? One day, you attend the entire day with KayTar? The next day, only stay for one hour and then leave? Slowly wean her from you? What about taking her when there are no other children there to play with the teachers for a while? She might be resistant, but her teachers are used to children with special needs...they might have some tricks up their sleeves to help. Is there anyway to up her vitamins to help with the illness issue? Are there probiotics available (I know NOTHING about this...just wondering)? Or special vitamins?

I agree with everyone. You ARE amazing. You're fighting this battle with every part of your being and you fight with such grace and poise. We're behind you, one hundred percent. Keep us posted.

kittenpie said...

Oh, sweetie. I don't know what to say, except to hope it all turns out much better than you fear. MUCH better, because it would be so good for you to get to do something for you, something that you want and that can move into the future. Hugs and good luck.

Amy said...

Change is hard, especially hard for your Kaytar. But change can also be very good. Praying that the transistions go smoother than you ever could have dreamed.

dawn224 said...

So.

Score one for man brain as to finding this particular "how will it work?"

Come back to this entry in a few days and write down the larger questions - anything that this eval/treatment team might be able to answer.

I forget, have we talked about "oral aversion" and a treatment plan for that ....? We've talked KayTar speech/lang stuff before, but I can't remember if it was that....

melody is slurping life said...

I understand every one of your concerns. You are an unbelievable mother and you will handle this. You will do what is right, what is necessary...and everyone will be fine. I did not say it would be easy, but it will all be good. :)

My hugs and prayers are with you.

Anonymous said...

I know I'm a little late to the party here, but hey, maybe you'll read it anyway. I am the mom to a beautiful 3.5 year old boy on the autism spectrum. PDD-NOS, to be exact. He is in a Developmental Delay preschool class in our district. And the issues you were discussing in the post were so close to home I decided to de-lurk. Prepare yourself- Assvice ahead!
The bottle...Do not wean from the bottle. One day she will decide she has had enough, and that will be okay. There are sooooo many kids on the autistic spectrum who are on the bottle till even age 5! I know people look at you funny and your extended family may whisper, but she needs the nutrition. And really, yes she does seem ASD to me, but it may be something else, and with these kids, change is not your friend. You simply have to do one thing at a time, and adding the stress of preschool on top of the stress of no bottles is a recipe for absolute disaster. As for the chewing- we take C's away and admonish "no chewing". We offer him an alternative, and if we give he back we remind him. Then if he persists we take it away and watch the meltdown ensue. It takes time for him to catch on, but he does. But he does occasionally still kill a nipple.
Preschool- I was terrified to send C to preschool, even for 3 hours a day. He was so rigid in his behavior, he always had to have things just so, he hates anyone to sing, he hated to go to sleep at night...And he was my baby! The night before his first day, I was sniffling to sleep when we had to make an emergency room run for croup. He started twice a week at the end of August, and I swear he's been sick every week. He cried every time for the first 2 months- I'm sure he didn't feel well, too- and today, he threw down his things and ran to do art with other kids.
It will take time. It will be hard. Make sure the teachers know how to spot an episode or the beginnings of one so they can call you. I wrote out a "getting to know C" sheet for his first, er, second day of school. Make sure you take her to visit the classs, maybe make a storybook about Kaytar going to school, what she will do, how you will pick her up. Visit the class alone so you get a sense of her daily schedule.
C's teachers don't bat an eye if he's sick, I email them. They are very understanding about building up the immunity. I sent bottles to school w/C for the first week, but he never needed them, too busy! so i stopped. He still takes three a day- he will only drink soy formula or ice water.
Being with the other kids and doing what they do was a much bigger motivator for my son than I realized. He is really thriving and I was really about to pull him out every week until X-mas break- overprotective, I guess.
Kaytar will probably bloom there, you just have to weather the transition. And don't worry about what anyone else thinks, you know her best!
Meri-mericaluv@yahoo.com