Friday, November 22, 2013

Five Minute Friday: Fly

"Look at Mommy.  Look at Mommy's eyes."  I point to the bridge of my nose, between my eyes.  And Ladybug points to her nose, without making eye contact.  

She turns her head.  I turn with her.  She looks the other direction.  I stay in her face.  She looks up, I move my head up.  She looks down, my face moves right with her.  

Eventually, for a fleeting second, her eyes lock with mine.  "Good job, we can read the book now."

And Llama Llama Mad at Mama gets read for the 3rd time today.  And I really just want to fly away.  

I want on a plane to someplace warm and sunny.  A beach would be nice.  Someplace I'm not fighting to keep the drafts out.  Some place it doesn't take 15 minutes to get the kids into their snow suits and mittens and where they don't fall flat on their faces 3 times on the way to the car, spread eagled in the snow, unable to move thanks to all the layers I packed on them.  

I want to fly away from this world of fighting for eye contact.  It's been a week, and I'm tired of it.  I'm sick of almost every interaction becoming a battle for that elusive skill.  And I read the books in hopes of finding a reason she doesn't have it.  And sometimes, I find hope.  Other times, I read the list and realize they're describing my child without ever having met her.  I'm used to the idea of fighting for eye contact during discipline, or from a teenager, but when they just want to read a book and you still have to fight for eye contact... it's draining.  It's a constant reminder of something I don't want to be reminded of.  

I want to fly to a normal world.  To a simple world, of a toddler's questions, of constant "what's that?" and "why?"  Where the coming month is filled with holiday parties and wrapping gifts and singing carols, not with developmental assessments and autism centers and therapy.  I long to fly to a world where I hear a childish rendition of Away in a Manger sung by my own child.  I'd even settle for Itsy Bitsy Spider sung next to the Christmas tree. 

I want to fly to a place no plane could ever take me.  But since I want to fly to a dream world, I might as well make that dream world include a beach. 

Stop:  That took way more than five minutes, mainly because of a one year old shutting herself in the bedroom, the one and two year olds using moving boxes as stools and not always staying upright, a reading of "Where's Baby's Belly Button?," and a couple loose shoes. Thankfully, the only hard and fast rule is to leave some encouragement for your link-up neighbor.  Come join us at Lisa Jo's blog for 5 minutes (even if it's spread out over an hour) of writing without obsessing over perfection.  

Tuesday, November 19, 2013

A Mother's Reaction to the Journey to Answers

I'll admit, I shed some tears that night.  I'd figured I would, no matter what I was told; pregnancy makes me prone to crying.  But after battling to get her to bed that night, when I would talk very seriously to her and she'd just smile and laugh, I began to loose faith that this is just normal toddler behavior.  I began to realize how out of control I'd begun to feel, that I was losing the ability to reach my child, to connect with her.  And it may be normal, I don't know.  I've never had a toddler before.  And every child is different.  But having yet another person say the word, and losing all my arguments against it, my defenses crumbled.  Because my arguments against it aren't from a maternal instinct of what is or is not true about my child.  They are from a selfish instinct.  The instinct that says, I am not ready to be the parent of an autism spectrum child.  That I can't handle a mental problem.  I feel I can do surgeries.  I can do medical.  I may not want to do it, but I feel confident that I can learn to manage medical situations.  But mental... psychology was my least favorite and worst subject in nursing school.  I didn't get it.  I hated those clinicals.  I want to understand my child.  And I don't understand autism, or PDD-NOS, or auditory processing disorder, or any other diagnosis that might be on the table right now.  And that scares me.  How can I raise a child I don't understand?  That thinks and processes differently than I do?

And my reactions in the past week weren't helping my thoughts.  I'd gotten so frustrated that it felt like I was talking to a brick wall.  That we weren't able to do a simple task that she'd been capable of doing just the week before while she was in her "lights on everybody's home absorbing everything" phase. (She does this every so often, times when it seems like she can hear and she reacts and responds and is, well... normal.  And they always give me hope that she's going to catch up soon.  And then she goes back into her world, often for months on end.) And I remember thinking, sitting there in the floor surrounded by Cheerios, that I hoped she had a hearing problem so that I'd know that the reason she was sitting there staring blankly and not moving was because she wasn't hearing my instructions.  She was just in her own world...

And I've said that so many times.  She's just Ladybug.  She's in her own world.  Leave her in her own world and she's perfectly content.  Interfere in her world... she might take kindly to it and she might not.  But I don't want her to be in her own world.  I want her to be in my world.  I want her to see what I see, hear what I hear, enjoy what I enjoy... I want to connect with her.  To understand her.  To know her heart.  Not in some sort of controlling way, but in a loving way.  So that I know how to help her.  And I think that's what scares me the most about this journey we're embarking on.  That I won't know how to help her.  That she'll be beyond my reach.  That she'll stay in her own little world, and I'll be shut out.  And when she's frustrated, and crying, I'll be clueless to know how to reach her.  That what I do will only make it worse.  And that kills my mother's heart.

Today, the llama and sheep and goats came to our side of the field, and got up on the dike so that we could see them.  I grabbed the girls and went out in the chill, bare feet and all, to see the "amina" (animals).  I sat them on the porch railing, and we watched them.  And they watched us.  And we talked about the llama mama, and the sheep that say baa, and the goats that say meh.  And she smiled.  And she and I looked at the same thing without effort.  And she repeated the names and sounds.  We connected.  Side by side, not face to face, but I'll take it. And I treasure those moments.  Because yesterday, nothing I did could reach her.  We talked.  We disciplined.  We distracted.  And nothing worked.  And I felt that distance so keenly when Turkey stopped sobbing and melted into my shoulder the instant I picked her up, pure love.  Some of that, I'm sure, is just toddler.  It's two.  Or personality.  I was never a loving child.  But I can no longer hold fast to the idea that there is absolutely no other issue with her outside of pure medical science.  Because I don't know.

And what little reading I've done has said one thing loud and clear: early treatment is the closest thing to a cure you'll get.  Waiting only makes things worse. So when our EIst called this evening to ask how quickly we wanted to move forward, I told her to go for it.  I want the assessments done, all of them, to get as much information as possible so that we can help her the best we can.  I've heard of autistic kids "slipping away" and I don't want that to happen.  I don't want the feeling of not being able to reach her to get any more frequent or desperate than it already has.  If we do the assessments and she's negative, awesome.  But we have to know... we have to try.  Even though it hurts so bad to admit it.

The Journey to Answers...

So I'm unsure how much to record here... detailing the lives of our children is a new problem my generation of parents faces.  Before, the most you'd do was in baby books and journals, which could be burned if necessary, but now what we record is forever saved on some hard drive or cloud or archive that I don't understand.  So if things disappear from here, I may be moving them to a more private location, or deleting them from the readily accessible web.

Our time in Billings was much more productive and overwhelming than I'd anticipated.  We saw five different doctors in addition to the sedated ABR.  So here are the results...

The ENT was great; tall and skinny so I guess he reminded her of the Mechanic since she let him pick her up.  He cleared her for anesthesia and made sure her ears were in good enough shape for testing, since she had a cold.  He mentioned a possibly dairy allergy... apparently dairy allergy can cause problems with hearing/ears without other strong symptoms like anaphylaxis. With her peanut allergy and eczema, other allergies may need to be considered, especially with the amount of dairy she consumes.  Something to check into...

The audiologist was also terrific.  She was able to do the sound booth test, which Ladybug failed, checked her tubes, which are functioning fine, and was even able to do the ear-bud test that we'd tried twice and hadn't been able to do.  But, the results, while not as bad as the soundbooth, were still abnormal enough to justify doing the sedated test, so off we went to meet the anesthesiologist.  Amazingly, Ladybug had only asked for milk once despite being NPO since 8pm the night before.

The hearing test was functionally normal.  There is a mild hearing loss in a certain range of frequencies that does not impact communication, either the ability to hear voices or to learn to speak.  So, we have no need of hearing aids; yay!  They do want to continue monitoring her hearing because of the cranio, I suppose, and the partial hearing loss to ensure it doesn't progress into something that would affect her.  But for now, her hearing is essentially normal.  When I say her name, or give directions, or say a word, she is hearing me.

The question then is, why are we not on track with her communication?  Why has that consistently been behind?  When I asked the audiologist who performed her test, she told me that we don't know precisely what she is hearing, only that the sound is reaching her brain and the brain is reacting to it.  She may be "misinterpreting" the sounds... whatever that means.  I don't know if she can misinterpret to the point of hearing Charlie Brown adults, or if misinterpreting means she doesn't recognize the difference between my voice and the hum of the refrigerator.  But, regardless, the problem does not lie in her ears.  It's not a simple medical issue.

Physically, she did great with the anesthesia.  They had to stick her at least four if not five times for the IV, which they finally got in her foot, but thankfully I wasn't there and she was already asleep at that point.  They gave her Versed to chill her out before the procedure so they could get her sedated easier, and it was actually kind of funny.  Poor little thing was sitting in this giant hospital recliner with her doggie Wubbanub, and her bunny, and her new hippo the surgery center gave her, and she started just falling over to the side.  She'd get this glazed look, and then she'd rouse and try to babble or watch the cartoons, but then she'd glaze over again and start slumping.  I told them I needed a prescription for that stuff to go home with!  It'd sure make car trips a lot easier!

Our cranio clinic was the part that was a lot more than I'd expected, but that was a good thing.  I feel confident that these people are going to do what is best for Ladybug without me having to hound them every step of the way, persuading them that something is going on with her.  Our first visit was with a geneticist; despite the known genetic mutation, we'd never seen a professional in this field.  He took a detailed family history regarding the cranio and any known developmental delays, and found it interesting that despite multiple cranio patients in the family, developmental delays have not been an issue for anyone except the first to have cranio, whose mother was told he was going to die because they didn't know anything about cranio or the surgeries to correct it.  He wants us to come to a genetic clinic in his office to discuss further testing to search for other mutations that might explain the delays.  He said even a small inversion can be enough to cause problems, and with one mutation already documented, the idea that others might have problems isn't far fetched.

The second visit was with the actual cranio surgeon.  I was so pleased... while I didn't get exact answers, I got someone who is going to dig a little to figure out how best to help Ladybug.  He had a great bedside manner with Ladybug, interacting with her to try to make her comfortable.  The most refreshing thing was he said we had done the right thing as parents to push to keep her monitored when we felt something was wrong.  It was so encouraging to hear that we've not lost our opportunity to fix any problems, and that he's looking past the textbook cranio of "obvious within a few months, surgery in the first year, or no problems" to consider the strange history of our family.  He differentiated between "functionally closed" and closed sutures, which cleared my confusion regarding when sutures are supposed to close.  They "close" around 2 years of age, but they are not "functionally closed."  They are able to continue expanding until a person is in their 20's. So the question is going to be, are her sutures "functionally closed" or did they just close early but are going to continue allowing her head to grow.  Right now, her head is at the 50% which is great, although I need to look back and see what her head circumference percentiles have been from the get-go.  He is going to obtain the actual CT images rather than just the reports to decide for himself if he thinks there might be a problem with compression of the brain.  Compression could cause delays, and would need to be dealt with.  He's going to see her again no later than 6 months, sooner if he sees something in the CT that needs to be addressed more quickly.  (This is the CT from this past January.)  Depending on what he sees, she may need an MRI to check the brain itself.  That means another sedation... sort of hoping that isn't needed!

The last visit, and the most overwhelming, was with a developmental pediatrician.  She wasn't originally scheduled to see this doctor, but after hearing a more detailed history from us and interacting with her they felt she needed to be seen.  I'd thought of trying to locate a developmental pedi after the practically normal hearing test of the previous day, but wasn't sure how I would find one being in Glasgow where we're short on actual pediatricians.  I have no problem with family doctors, that's who cared for Ladybug for the first 18 months of her life, but when you get to this point you need something a little more detailed.  Thankfully, that was worked out for me without me having to say a word!  This doctor observed Ladybug while asking us some questions and reviewing her history, and then asked "has anyone mentioned the possibility of autism to you?"  I cringed.  Yes, they have, and I've pushed that possibility out of my mind and out of her charts.  I was insistent that we not consider that until we dealt with the medical issues of hearing.  But now that hearing is off the table... I couldn't push it away any longer.  But I had to argue, just a little.  She's affectionate.  And Ladybug conveniently hugged the Mechanic's legs to prove my point.

And the doctor agreed, yes, she's physically affectionate, but not mind affectionate.  Huh?  Normally, I'm on top of the terminology in medical offices, but this one I'd never heard.  She pointed out that Ladybug had yet to look either of us in the face, wasn't making eye contact, wasn't watching for our reactions.  She admitted she'd only been observing for 5 minutes, but we couldn't argue... since birth, eye contact has rarely been there.  It's so rare, it seems normal to me, at least for Ladybug.  But when Turkey came along, I realized what a difference there was... she and I locked eyes at less than 2 hours old.  And the eye contact is long, and frequent.  I've noticed the difference, and I've tried to dismiss it... Ladybug's older and has grown out of eye contact.  Or come up with some explanation.  But apparently my explanations aren't right... she should be having eye contact, and she's not.  We discussed her social interaction, or rather, lack of social interaction.  And the doctor suggested we have her do a detailed developmental assessment, coordinated through the early intervention network but using the resources of a different region than what we're in.  I thought we'd had quite a few assessments, but apparently this is different.

But, as devastating as just the mention of that word was to me, the doctor left us with hope.  She gave us a task: don't give Ladybug anything she wants until she makes eye contact.  She told us to get in her face, to move with her, until she looks us in the eyes, and then immediately reward that.  She said if we catch this, whatever it is, at age two, we can teach her appropriate social interaction.  If we wait till she's school age, it'll be too late; she'll be set in her ways and we won't be able to change her.

Wednesday, November 13, 2013

Though the Fig Tree Does Not Bud

Call me melodramatic if you wish.  Or just call me an emotional pregnant woman in pain.

The next few days hold a lot in store for my little family.  This pregnancy is proving to be, like the other two, a tad worrisome.  This particular doctor isn't concerned, on the other hand, he isn't the one constantly wondering if the little heart is still beating or if the blood and pain are signaling that there's a problem.  Of course if there is a problem, there's very little that could be done about it anyway, since bed rest isn't exactly an option when you have two toddlers.  So I'll just keep watching and waiting and praying and hoping for the day when I can feel definite jabs and kicks and squirms to let me know things are okay in there.

I head to Billings tomorrow, and Ladybug will be having her sedated ABR on Thursday.  It's going to be ugly.  She can't have anything to eat or drink after midnight, but we have to see the ENT and the audiologist before we can go to the surgery center, and her procedure isn't scheduled until 1230.  That's a long time for a child that is constantly wanting milk and saying "hunry."  And as much as she hates doctors now... I feel sorry for our fellow patients, because I doubt I'm going to be able to control the screaming.

And then Friday she'll see her new cranio doctor.  We'll get that second opinion we've considered several times.

On one hand, I don't want my child to have a hearing problem.  I don't want her to have to have hearing aids.  I don't want her to have surgery.  I don't want her to have to get put under yet again, and have her hair shaved off, and have a big scar, and go through all that pain.

On the other hand, I am tired of wondering why.  I'm tired of the delays, the frustrations, the fluctuations in understanding that she has.  I'm tired of wondering if she's not picking up the Cheerios because she can't understand what I want her to do, or if she's not picking up her Cheerio's because she's being a typical stubborn disobedient toddler. I'm tired of stomping my foot or clapping my hands to get her attention and people looking at me like I'm treating her like a dog.

I fear that we may get no answers.  I fear that we may get answers with solutions that aren't pleasant.  There's no good end to this.  And yes, I know that's the worst possible way of looking at things.  Once again, pregnant emotional hormonal in pain woman here.

I want a simple, pain free fix.  Cheap fix would be good too.  In short, I want a miracle.  I want her to wake up and suddenly be all caught up.  For her head to be just fine, for her muscles to be strong, for her words to be clear, for her to be able to answer a simple question like "Where do you hurt?"

Sunday, in a guided prayer (which was new to me), we were instructed to think of someone in the Bible that God did something for.  And then we were supposed to praise God for His grace towards that person, and for His grace towards us.  Immediately I thought of the many examples of children being healed.  My God is capable of that.

And then the sermon was about how we react to unanswered prayers, prayers that aren't answered the way we want in the timing that we want.  And we went through example after example of people who prayed, and who God didn't answer them with an immediate yes.

This of course left me thinking, how am I going to react as I'm driving back Saturday?  Any news I get is going to be difficult.  And with this pregnancy, what if the pain continues?  What if something happens to this baby?  What if I get some sort of unexpected news at my next appointment, or my next ultrasound?  Will I be able to say, as Habakkuk said,

Though the fig tree does not bud
and there are no grapes on the vines,
though the olive crop fails
and the fields produce no food,
though there are no sheep in the pen
and no cattle in the stalls, 
yet I will rejoice in the Lord,
I will be joyful in God my Savior
The Sovereign Lord is my strength;
He makes my feet like the feet of a deer,
He enables me to tread on the heights.

Friday, November 8, 2013

Five Minute Friday: Truth

Written as part of a community of bloggers who gather at Lisa Jo's blog on Fridays to write with abandon for five minutes.  Only steadfast rule is you have to go visit your "link-up" neighbor and leave them a pleasant note.  When the anger and hate and drama of the internet gets me down, this is a place of comfort and encouragement!  Come join us!


Do my actions make the truth clear?

Does the tone of my voice, as well as the words, speak the truth that I want my girls to know?

Or is the truth lost in the muddle of frustration, anxiety, and exhaustion?

I never wanted to say "you're driving me crazy" to my kids.  But I did.  And when I plopped them in their beds and came back out and sank into the couch, I wanted to take it back.  Because while it's true, it's only a tiny piece of truth.

What is so much bigger is my love for them.  How, even on the craziest days, this is what I dreamed of as a little girl.  How I wouldn't trade my time with them for all the pillowtop mattresses and microfiber sofas and solid wood end tables in the world.

What truth do they hear?  My oldest is having a major hearing test done next week, a kind that requires sedation.  So she may not even hear all my words.  What she does "hear," are my facial expressions.  My grip on her arm that conveys "you're in trouble young lady."  My "why are you up?" expression instead of the "I'm so glad you're here" that I want her to see.

How much of the truth do they see in me, and how much is just clutter?