Say that again? Don’t mumble

Sometimes the things little kids say can really make laugh. Like when Ellie, our three year old takes over a room and says, “Alwight you guys, listen up! No talking, no singing, no jumping.”

Other things they say really make you stop and think. Like when Ellie came home from Sunday School excited to sing us a new song: “Jeswus wuvs the wittle childwen.” You probably thought that you know this song, red and yellow, black and white, they are precious in His sight…

But are you familiar with the second verse? “Jeswus died from all the childwen…”

Did you catch that? From not for. Although, if you want to get deep into the theological doctrines of original sin, it might just be that He died FROM our sins, not merely FOR them.

And of course, it’s just plain cute to listen to how two and three year olds speak, “PINK, itz mah favowite colowr!”

But imagine if you still couldn’t speak any better than a two year old now. It would be pretty difficult, wouldn’t it? You might even feel trapped. You probably wouldn’t be taken very seriously. People would assume that you weren’t as intelligent as you are just because you aren’t as intelligible as they are.

That’s how life is for Ellie’s older sister Grace. Once an older kid even asked if she was “retarded.” All the tests and assessments that she took in preschool and kindergarten report that she is right on grade level in terms of thinking, knowledge, understanding, intelligence and problem solving.

For years we’ve taken Grace (who’s almost six) to various doctors, experts, speech therapists, and even a chairopractor to find out what was wrong with her. She has a speech impediment, delayed motor skills, and trouble with bathroom control. A number of people suggested to us that she may have “Dysarthria,” sort of a delayed development of her muscles and nerves.

Two weeks ago she was screened and accepted into a speech therapy program at the Monroe Meyer Institute at the University of Nebraska Medical Center in Omaha. Our insurance company had refused to cover speech therapy unless there was evidence that her need was caused by some kind of trauma after birth. Imagine a 4 or 5 year old having to undergo MRI tests to rule out spine and brain damage. Finally, she is being sponsored by a family friend who's a member of the Scottish Rite, it's sort of like the Shriner's.

As a theologically conservative Lutheran, I've always had my qualms about Free Masonry and any other quasai-Arab, fraternal organizations. The biggest qualm is just that they’re secret societies. There are questions of works-righteousness, there are suspicions of deism. And of course there are the funny hats.

You know what? I thank God for these people and their charitable work, otherwise, we'd never be able to afford to get her the best help that she needs. God uses all kind of people to accomplish good things. What does it matter why they do what they do or who they’re associated with? Jesus said that you can judge a tree by it’s fruit. So God bless you Shriners and Scottish Rite-wingers and you funny hats too. Thank you for what you do for children.

The specialist at Monroe Meyer said that from his examination, he thinks that it is more likely that our daughter suffers from Apraxia.

Apraxia is caused by “damage to the corpus callosum, frontal lobe, or parietal lobe of the human brain produces a category of deficits called apraxia. Literally, the term means ‘without action,’ but apraxia differs from paralysis or weakness that occurs when motor structures such as the precentral gyrus, basal ganglia, brain stem, or spinal cord are damaged. Apraxia is the "inability to properly execute a learned skilled movement" Neuropsychological studies of the apraxias have provided information about the way skilled behaviors are organized and initiated.”

“There are four major types of apraxia… Limb apraxia refers to problems with movements of the arms, hands, and fingers. Oral apraxia refers to problems with movements of the muscles used in speech.” (http://www.apraxia-kids.org/)

It would make sense to me if Grace has both of these. A pediatric neurologist at Children’s Hospital thought that Grace might merely have developmental delay or what they called dis-coordination. All I know is that Grace and Ellie basically learned how to climb a ladder and mastered pedaling a bike at about the same time. Dance class has helped a her a lot with coordination, but she still can’t quite skip and the tumbling and gymnastics that they do is a major challenge.

My best guess is still that this was caused by having her umbilical chord wrapped around her neck during her birth. Part of me is bitter that the HMO didn't have their doctors taker her by C-Section much sooner than they did, but I know that all things work for the good of those who love the Lord (Romans 8:28) and that God has a plan to use this to His advantage to bless my daughter, and others through her.

I'm told that Apraxia is sort of a cousin to Dislexia. That makes sense. Grace usually writes most of her letters fine, but instead of saying "Macaroni and Cheese," she says "Ronimac and Cheese." Sometimes it looks like she’s writing her letters in a mirror, but most kids do that sort of thing up until fourth grade or so. In fact, she’s really bright. She loves reading and has started tackling Dr. Suess on her own, without any prompting.

What Grace has taught me that I’d like to pass on to you, is that you can’t judge a radio by its announcer. Or a book by its cover. People may be far deeper, smarter, and more complicated than their vocabulary would ever make you think.

She is incredibly sensitive, kind, patient, creative and fun. People who meet her almost always describe her as friendly, bubbly, effervescent, exuberant and easy going. Of course, don’t ask her to pronounce any of those words.

Apraxia

For years we took oldest our daughter to various doctors, experts, speech therapists, and even a chiropractor to find out what was wrong with her. She has a speech impediment, delayed motor skills, and trouble with bathroom control. A number of people suggested to us that she may have Dysarthria, sort of a delayed development of her muscles and nerves.

Yesterday she was screened and accepted into a speech therapy program at the Monroe Meyer Institute at the University of Nebraska Medical Center in Omaha. Our insurance company had refused to cover speech therapy unless there was evidence that her need was caused by some kind of trauma after birth. Imagine a 4 or 5 year old having to undergo MRI tests to rule out spine and brain damage. Finally, she is being sponsored by a family friend who's a member of the Scottish Rite, it's sort of like the Shriner's.

As a theologically conservative Lutheran, I've certainly always had my qualms about Free Masonry and any other secretive, quasai arab, quasai occult fraternal organizations. Be that as it may, I thank God for these people and their charitable work, otherwise, we'd never be able to afford to get her the help she need.

The specialist at Monroe Meyer said that from his examination, he thinks that it is more likely that our daughter suffers from Apraxia.

Damage to the corpus callosum, frontal lobe, or parietal lobe of the human brain produces a category of deficits called apraxia. Literally, the term means "without action," but apraxia differs from paralysis or weakness that occurs when motor structures such as the precentral gyrus, basal ganglia, brain stem, or spinal cord are damaged. Apraxia is the "inability to properly execute a learned skilled movement" Neuropsychological studies of the apraxias have provided information about the way skilled behaviors are organized and initiated.

There are four major types of apraxia two of which will be discussed in this chapter. Limb apraxia refers to problems with movements of the arms, hands, and fingers. Oral apraxia refers to problems with movements of the muscles used in speech.

My best guess is still that this was caused by having her umbilical chord wrapped around her neck during her birth. Part of me is bitter that the HMO didn't have their doctors taker her by C-Section much sooner than they did, but I know that all things work for the good of those who love the Lord (Romans 8:28) and that God has a plan to use this to His advantage to bless my daughter, and others through her.

I'm told that Apraxia is sort of a cousin to Dislexia. That makes sense. Grace writes most of her letters fine, but instead of saying "Macaroni and Cheese," she says "Ronimac and Cheese."

If you're a family member or a friend, this is the latest information that we have. We hope that it helps you understand some of what she's going through and why she is the way she is. Our prayer is that the new, aggressive speech therapy will not only help her verbally, but socially, emotionally and academically as well. Thank you for your continued prayer and support.

Milestones in Language development & aquisition:

Or “more kids say the darndest things”

“No! No Gwacie! Gimme it baaack!” Ellen, the two year old protested. Struggling to get the toy, comb, condiment, whatever it was back from her four year old sister Grace at the dinner table. I don’t really remember what it was they were fighting over, because my wife Bethany and I were so excited.

“Yeah Ellie! You got your sister’s name right!!!” we cheered and clapped. If you remember from a few columns back, Ellen thinks that Garce’s name is “Hewlwn.” We’ve been working to correct this for some time.

The parenting books all say you’re supposed to reward positive behavior with such praise. We’ve applauded Ellie’s proper use of “the big girl potty” so much this way that now when we flush the toilet she claps for us, as it “Yeah Daddy (or Mommy), you wen powddy by yosewf!”

The victory didn’t last long. We decided to play a game of point-to-the-family-member-and-ask-their name. It didn’t go all that well.

Parent: Points to me, “What’s HIS name?”
Ellen: “Daddy!”
Parent: “Yeah!!! great job,” points to Bethany, “What’s HER name?”
Ellen: “Mommy!”
Parent: “Hurrah! Wonderful, you’re so smart,” points to older sister, “What’s HER name?”
Ellen: “GwHelwen!”
Parent: “Noo-o, no, sweety, her name is ‘Gracie.’ GRAY-SEE. Sigh.” In desperation, points to Ellen herself, “Okay, then what’s YOUR name?”
Ellen: “ummmmm… I ME!”

Well, at least she’s mastered the use of personal pronouns. She’s starting to repeat lots of what we say, that’s been a lot of fun. We missed many of those typical toddler benchmarks with Grace. Those of you who know her, know that she’s pretty hard to understand much of the time. At the risk of embarrassing her years from now or “airing my dirty laundry in the press,” I’d like to try to explain it to you.

Grace suffers from what is called Dysarthria. Dysarthria is a speech disorder that is due to a weakness or in-coordination of the speech muscles. Speech is slow, weak, imprecise or uncoordinated. It can affect both children and adults. "Childhood dysarthria" can often be a symptom of a disease, such as cerebral palsy, muscular dystrophy, or Bell’s palsy. Grace does not have any of these.

By the way none of those are forms of mental retardation. I say this because many of us might mistake them for forms of autism, Down’s syndrome or severe mental or learning disabilities. They’re muscle, nerve, or speech problems, not problems with intelligence or learning abilities.

A child once asked me if Grace was “retarded.” I held it together and didn’t cry or lash out in anger, instead I did my best to explain what Dysarthria is, but I took a long walk alone to wrestle with God when I was done.

Someone recently asked if we planned to hold Grace back from kindergarten since she was so behind. We were dumbfounded because as far as we or her teachers and doctors can tell, she’s right where she needs to be. Recognizes her name, knows her colors, counts to twenty, gets dressed by herself, starts the VCR by herself… We’re just getting stated on zipping up her coat though.

Besides, there are more forms of intelligence than math or language. Harvard Education Professor Howard Gardener teaches that there are multiple forms of intelligences.

You know how they say that if you lose one of your senses, you’re others become more acute? Like how blind people have really good hearing? Well, I think Grace has compensated for some of her weaknesses with other strengths. I know I’m biased as an Art teacher, but I think she’s got spatial intelligence ("picture smart"). Grace loves to paint and cut things out. She experiments with neutral colors and cuts out “hair-styles” and beards and hats for people.

There’s bodily-kinesthetic intelligence ("body smart"), not Grace’s area, but that would be consistent with Dysarthria since it has to do with muscle and nerve development. This would be Ellen’s area. This chick loves to jump off of high furniture and land on her feet and she loves to throw balls. Although, in Grace’s imagination, she’s come up with her own basketball league- the Dinosaur league. The boys are the “Sharp-tooths” and the girls are the “little foots.” You have to see the cartoon movie “Land before Time.”

There’s also musical intelligence ("music smart") Grace loves to sing and dance, but obviously the speech and coordination things hamper this.

There’s Intra-personal intelligence ("self smart") too many of us think we have this but don’t. And of course there’s interpersonal intelligence ("people smart"). I’d like to think Grace has this, she’s usually pretty sensitive and compassionate and a fairly decent judge of character.

In both adults and children, Dysarthria can result from head injury or stroke. As far as we can tell, Grace’s Dysarthria is a result of trauma in the womb.

She had her umbilical chord wrapped around her neck, making matters worse, she got stuck in the birth canal during labor. Unfortunately the policy of the HMO in California where she was delivered was to encourage natural child-birth as much as possible and to discourage Caesarian sections whenever possible.

Of course, we haven’t been able to convince our insurance company that this is what caused it, and we seem can’t get ample proof from the HMO to satisfy them. They’re policy is that they’ll pay to get help if it was caused by trauma, but not if it’s a “pre-existing condition/congenital condition.” But, in theory, she’ll grow out of it and eventually her speech will improve at least somewhat. And so far, she’s made friends easily and hasn’t had to endure any cruel teasing from her classmates. Of course, she might not tell us if she had, we might not understand, literally.

If you’d like to learn more about Dysarthria you can visit these websites, http://www.asha.org/public/speech/disorders/dysarthria.htm, http://home.ica.net/~fred/anch10-1.htm

I know this column has gotten long again but I feel bad that it’s also gotten pretty somber, so I’d like to leave you with a couple more Ellie stories. One Sunday we sat in the balcony at church, “Grammy Mawdge,” is an organist. We had the hardest time convincing Ellie that there weren’t “Monstaws” living behind the organ pipes.

Last Sunday Ellen noticed the stained glass window in the back of Jesus praying at Gesthemane.
“He sad, he cwying,” Ellie noticed.
“Yes, He is, why do you think He’s sad?” I asked her.
“He want His mommy,” she explained.