Saturday, May 26, 2007


WARNING: Lengthy post! This update is focused specifically on our journey to find out why Kate seemed so very different from her girlfriends. Many of you already know most of this, but I wanted to pull it all together. I've been just horrible about updating the blog and felt that it was important to be truthful in representing who our beautiful daughter is -- not just the random pictures here and there. The lengthy explanation below is our attempt at just that.

Where to begin?

On October 25, 2005 we met the most perfect little girl in the world: our daughter. Kate was 16 months old that day -- a little scared, but even more curious. We were blessed by her smile from the first day and have since been blessed by so much more.

At 16 months, she was clearly behind developmentally – not an unusual occurrence for children who had experienced institutionalized life. She was not able to sit up without pulling herself up, didn’t hold a bottle, wasn’t walking, and only had a few Chinese words. She choked when eating and had a very, very difficult time going to sleep. Her travel mates seemed much more advanced, but Kate was a bit younger and every child is different. We didn’t worry – we were in love. We also didn’t bury our heads in the sand. We knew there might be issues and we prepared for them. Quite simply, we believed that worrying was premature at this point. It was much more important to work on attachment, bonding and see what the future might bring.

In the first several months, Kate stunned us with her progress and tickled us with her enthusiasm for life. But still there were issues. There were several problems that, by themselves, didn’t seem like a big deal but combined kept troubling us. Issues that seemed insignificant when we mentioned them, but our gut kept saying that things were not right.

~Kate kept overstuffing her mouth when eating – we attributed this to being new at table food.
~She would get very upset if a full plate was put in front of her. She would throw food, reject it, scream, etc. – we thought this was just a toddler quirk that would pass in time.
~Kate had one word at this time: “Mama” (same word in Chinese) – she used it with slightly different inflections to mean anything and everything. This concerned me, but everyone assured me that it would just take time. Logically, this made sense but my gut kept nagging at me.
~Sleep was a nightmare. Getting her to sleep took hours, then there were the night terrors, the waking up for a few hours in the middle of the night. We were all exhausted.
~Different textures and surfaces would greatly upset our sweet girl. If she fell in the grass, she would scream bloody murder and immediately life up her legs and arms so as to avoid contact. ~If her hands were dirty, she was genuinely distraught. Over time, we worked on desensitizing her and it got a little bit better, but still – things were off.
~From day one, Kate always carried something in her hand – usually a book. As a teacher, I loved this about her. I loved it until we started to see that she could only be calm if she had that certain something in her hand and would refuse activities that would require her to set it down. ~When we voiced our concerns about her fixation on books, we’d often hear “But it’s just great that she loves books” of “Every kid has quirks – how great that books are her quirk.”
~When upset, Kate would rip at her neck with her nails. She would scratch at her knee and hit her head.

At the same time, we were also seeing so many great things in our little girl:
~At eighteen months she began walking – just at the end of the timeframe for “normal development.”
~Except for her considerable quirks, she embraced life. Everyone ALWAYS said, “what a happy baby.” (Of course, Scott and I would be at home and feel like such idiots because we were so exhausted and didn’t see what others always saw. We saw the happy baby, but we also saw all these quirks that kept nagging at us).
~She eventually added a few words to her repertoire: Papa, buh-buh-buh (butterfly), bah (ball), Mamama (grandma). Perhaps things were looking up.
~Kate was gaining weight and eating a wide variety of foods.
~She never put non-food items in her mouth. We knew that mouthing objects was part of normal development, but it seemed so nice that we never had to worry about childproofing – our daughter simply would not put things in her mouth. How nice for us!

At 21 months, we finally had Kate screened through our county’s Early Intervention program. I had asked the pediatrician well before this and he assured me that she was coming along nicely. I have since switched pediatricians.

Early Intervention began providing speech services once per week. Our speech therapist has been a huge blessing and has led us to other services for Kate.

Over time, as other issues did not go away, she was rescreened and qualified for the following:

Speech therapy – 2 times per week
Physical therapy – 1 time per week
Occupational therapy – 2 times per week (to address sensory issues and fine motor skills)
Behavioral therapy – 1 time per week

With multiple therapists each addressing issues of their specialty, we saw progress but still feared that nobody was seeing the whole picture – not the picture that we were seeing. And we weren’t always good at explaining what we were seeing. We sometimes sounded like overprotective, overconcerned parents who were not in touch with the reality of toddlerhood.

People would say:
~Of course she’s acting out – she’s two!
~Oh, my son / daughter / niece / Albert Einstein / etc. didn’t talk until they were three years old.
~So she doesn’t like her hands dirty – who does?
~My kid overstuffs his mouth too.
~Let her cry it out – she’ll go to sleep.

Luckily, we also believed in ourselves as experts and did have several people in our lives who didn’t think we were crazy. We changed pediatricians and got more proactive.

Our speech therapist mentioned “speech apraxia” and Melissa learned everything she could on it over that next week until it was time for speech therapy again. We believed we had an answer! Not a happy answer, but living in the truth is always more hopeful than living in denial.

But speech apraxia didn’t explain everything.

It didn’t explain the choking at night.
It didn’t explain Kate hating having her teeth brushed or refusing to let me touch her mouth.
It didn’t explain her attention span (or lack thereof).
It didn’t explain the fixation on books.

We’ve had more tests, we’ve learned a whole lot more. We’ve been able to tease out the real problems from the typical toddler problems. And we’ve found some labels that fit.

And for those of you who think kids shouldn’t be labeled, we agree – to a certain extent. A label doesn’t define a child, but a label can help us obtain the right services and the right information. A label can point us in the right direction, as long as we always see our child first, the label second.

So here are some “labels” that are currently helping us to understand Kate’s realities (click on label to link to informative articles):

Childhood Apraxia of Speech
Sensory Integration Dysfunction
Mild Global Dyspraxia

To understand how these all often work together, read this:

Kate still has a few more tests, but it looks like we’re reaching a place where we have a better understanding of Kate’s disabilities. More importantly, we are learning how to treat them so that they don’t hold Kate back form being all that God has meant for her to be.

Tests to go:
The Pediatric Neurologist believes that Kate’s speech , gross and fine motor skills delays are a motor-planning disorder (aka, speech apraxia and global dyspraxia), but wants to rule out some additional possibilities so he has ordered blood work and an MRI. These are all scheduled for June 4th.

Upper GI – to check for reflux. Yucky test, but reflux would be very easy to treat and would basically eliminate the nighttime issues. Not scheduled yet.

Progress made:
A tonsillectomy and adenoidectomy (also known as a T&A – which Scott and I thought was hilarious in our oh-so-adolescent sense of humor) has eliminated the sleep apnea.

A swallow study has helped us understand that Kate is choking based on motor-planning difficulties in chewing and swallowing – and also has pointed out a possibility of reflux which is easily treatable.

Kate has been learning ASL (American Sign Language) and now has over 80 signs. This helps her communicate better and also improves her motor skills.

More consistent, confident parenting has all but eliminated the sleep issues in regards to her falling asleep without us in the room. Her behavior has also improved in terms of attention span, following directions and behaving nicely. We attribute this to Kate getting older, us being consistent, and her receiving sensory therapies that help her to feel more “organized” in her body and in her head.

With a great deal of sensory work, Kate has a better attention span, is not afraid of different textures and even loves the sandbox. Her latest accomplishment? Mouthing anything and everything which is so promising. In order for her to make real progress with her speech, we need to be able to touch her mouth, lips and tongue – to train the motor movements. For the first time, we see that this is a real possibility in the future.

Scott and I no longer feel inadequate at the job – at least no more so than anyone else. Being a parent is hard work, no matter what, but we’ve let ourselves off the hook. We’re not perfect, we overlook things, we make some bad choices, but we also are strong advocates for our child and refuse to let her be anything but the best Kate she can be. We refuse to stay in denial about her disabilities – and yes, they are disabilities. (We are proud to say that because it is the truth. And there is nothing shameful about disabilities, about struggling, about learning and about growing. A disability is not an excuse; it is an explanation that helps us reach the same place but sometimes with different tools.)

Like every other parent, we’ve had some dark times worrying about Kate. But mostly we’ve let go of the worry and worked on what was actually in our control.

We’ve been spending more time enjoying her intelligence, wicked sense of humor, incredible growth, love of animals, music, life.

And mostly, our days are the same as any other family’s days – but it was a bit of a different road to get here.

Invisible disabilities are incredibly powerful. They make you doubt your insight as a parent and make it much easier to live in denial. They keep others from acknowledging problems, which makes the family live in more isolation – feeling that they are just inadequate parents, that if they were only better parents, things would be better. And the truly cruel thing about invisible disabilities? They make you only see the surface: a cute, happy toddler. But what happens as that cute, happy toddler gets older? It’s not so cute in 2nd grade if she only has 10 words, and screeches if she doesn’t get her way. It isn’t cute in 5th grade if she can’t keep up with the others, so she retreats to a quiet corner to flip through a book to find comfort. And it isn’t cute at any age if something is wrong or if someone has hurt her and she cannot let us know.

But Kate is not invisible and we refuse to let her disabilities make her invisible.

There is nothing we won’t do for our child. And we are so incredibly grateful that China let us adopt her. And we are grateful that, in China, her disability was so invisible. Had Kate been placed on the Waiting Child (special needs) list, she wouldn’t have been ours. We did not choose special needs because we didn’t think we were up to the task. Thankfully, God knew better.

And you know, as real as her issues are, they are not what define her and are not even the biggest part of her life. They are a huge part of our lives right now just because we’re trying to get her all the appropriate services . So Scott and I let it define the two of us a bit as we are finding what she needs simply so that it never defines her.

On October 25, 2005 we met the most perfect little girl in the world: our daughter. Nineteen months later and we still feel the same way.

Kate at naptime, wearing last year's Halloween costume -- she LOVES this thing!


Stefanie said...

BRAVO!! So well written, I loved reading every word of it! You and Scott are doing an amazing job of advocating for Kate so she can 'be the best Kate she can be'... that is everything we, as parents, can hope to do for our children :) Keep up the amazing work!! Hugs to that beautiful girl and her wonderful mama!

M3 said...

Wow, you have done an incredible amount of research and are doing an amazing parenting job. You shouldn't feel inadequate at all -- you guys rock!

Grandma said...

Terrific explanation! We are all better educated as a result. We are terribly impressed with your parenting skills. You certainly have done a great job inspite of no experience or instructions. Kate may be short on the spoken word but her actions, signing and those incredible facial expressions of hers leave no room for questions. She has truly captured our hearts!

Beverly said...

Just a powerful reminder of what perserverence can do and that it is needed to defend and protect our children. Parental instincts are extremely powerful no matter the road taken to become parents. Never let someone doubt what you know about your child. Beautiful post about your wonderful daughter.


Tertia said...

What a lovely post, thanks so much for sharing it with me. Am interested to hear more about what the 'experts' say about her having to have something in her hand all the time. Adam does that a lot too.

I love the term 'invisible disabilities' and I especially love your line "...we refuse to let her disabilities make her invisible."

PS She is gorgeous!

The Lewises said...

Beautifully written. You're so powerful now, because you're Kate's advocate. And you'll be an inspiration for other parents who are going through similar experiences. Your comment about making sure Kate has a voice so noone could ever hurt her gave me chills. That's what it's all about--a ferocious determination to give these girls the best possible life. I applaud you two. --Caroline