Monthly Archives: November 2015

Learning, without the verbal ability to express it, is tough. We haven’t been able to teach Sophie little songs or rhymes, or use repetition that seemed to have any lasting impact. Because Sophie couldn’t verbalize any of it. We’ve talked about things like, colors, letters and numbers, days and months, for three and a half years. Colors and shapes caught on first, because they were easily recognizable visually. But letters and numbers have been our Everest these past several years. But no more. Sophie knows her alphabet!!
Somewhere in the past couple of weeks, Sophie’s speech light bulb has turned on. She’s finally talking (though not always intelligibly). She’ll try to say just about anything. I’ve waited for so long for the switch to flip, for her words to come. And here they are. We’ve been so excited to hear Sophie attempting speech!I have been blown away by the understanding and learning that have been revealed by Sophie’s newfound speech. She’s been hearing songs, watching phonics shows, doing letter puzzles, and playing with the alphabet train for months, but we had no idea what was soaking in. This week at bath time, I got out the foam letters (after hearing her “sing” along to the alphabet song on the TV). I quizzed her on random letters, all 26 of them, and she knew all but maybe 3. I’m so proud of her in this moment, I just had to share it with all her people. I know that most kids learn this information at a much younger age, but without speech, that’s been really hard for Sophie. It’s amazing to hear so much of what’s been trapped in Sophie’s sweet little head come pouring out as she learns to speak. Speech is still tough, and her sounds aren’t very precise. But we absolutely will take it. I’m so very proud of my girl! Thank you Jesus for speech!

We all know by this point (I hope!) that talking is made difficult for children with apraxia of speech. But, there are many other things that are difficult for a child with Sophie’s speech disorder as well. I write this post to further educate Sophie’s People who know her and love her and want to understand her world. This post was prompted by my neighbors, who wanted to take a picture of Sophie and Micah. I found myself explaining how difficult smiling was for Sophie, and I thought, there are many other things besides speech that are made very difficult by apraxia. So, I thought another informative post might be in order. Here is a short list of other actions that are typically pretty easy for the average child that will be/are a struggle for Sophie:

A typical Sophie “smile”

*Smiling — As I state above, smiling is difficult for Sophie when it is a planned action. Spontaneous smiles happen all the time, but she cannot easily intentionally plan a smile, as in when we are talking with a friend, or meeting a new person, or posing for the camera. Go ahead and make the long “eee” sound now as you sit there. Notice how it’s a smiling motion, your teeth are bared? This is a very challenging vowel for Sophie to plan, and it’s the same motion as smiling.

*Blowing — Sophie will turn four in February, and it is my secret hope that she will finally be able to blow out those birthday candles! Recently she has started trying to blow on her food through her mouth. (Before she always tried to blow on it with her nose, which is just gross.) So I’m hopeful that with practice we will be able to refine that skill into successful birthday candle blow out.  Likewise, blowing bubbles this summer was pretty challenging. Bubbles don’t blow when you try to use your nose. (Again, kind of gross, though slightly less because there’s no snot going onto food.) For children with apraxia, often the long O sound and the ooo sound, those cheerio-mouth sounds, are tough. If you pause for a moment and blow, you’ll realize your mouth is in that shape.

Working on blowing out those birthday candles at her third birthday party.

*Giving Kisses — Sophie still kisses me with a slack, open mouth. It doesn’t bother me, though we are working on not kissing with our teeth… That’s called biting, and it’s not nice. Sophie can’t pucker her lips, smack her lips, or blow raspberries (zorbits, depending on your contingency). These lip movements require a lot of planning and a lot of muscle control, which, with Sophie’s hypotonia, is also very difficult. Thankfully, she’s got a few years to perfect her skills in this arena.
*Licking — This may seem like an okay skill to lack. It falls into the category of kissing with your teeth — not nice. But, licking is an important skill, especially when there are beaters covered in chocolate batter to be considered, or food smeared all over your lips. Spontaneously, Sophie may stick out her tongue to lick her lips, but she isn’t able to intentionally do this with ease.
*Refined fine motor movements — Often times, global apraxia (or dyspraxia) accompanies apraxia of speech. This is not something that Sophie has officially been diagnosed with, but we do see some coordination issues for her. In the same way that her brain cannot plan certain movements of her mouth (or it’s very difficult to do so), her brain has trouble planning certain body movements. We mostly see this in the use of her fingers. Sophie cannot hold up three fingers to tell you her age. She is now able to hold up one finger, and we are working on two. In addition, this makes signing letters and colors (which use letters) very difficult. Use of fork and spoon are also a challenge. These are skills that will come along with practice, but they are things that the average three and a half year old does not struggle with.

In addition to these simple [read, understand: complex] actions, we’ve found that emotions are really difficult for a child with apraxia of speech. One of the best ways to feel better when upset is to give vent to feelings, and one of the best ways to do this is through verbal expression. Sophie cannot verbally express her feelings. This leads to a lot of upset, even meltdowns (different than tantrums), because she becomes overwhelmed and struggles even to identify, let alone express, what she’s feeling. We give her grace and encourage her to remain calm whist trying to help her identify and express her feelings.

Again, I write these things to educate, not to make anyone feel sorry for Sophie. The very last thing that we need is pity. Seriously. To us, this is normal. To Sophie, this is normal. We SO appreciate support, but we certainly don’t need to be pitied. We will always support Sophie in the things that are difficult for her because of the added challenges that she has, even if these seem like easy things for the “typical” child. We always temper this with some tough love, recognizing that she needs challenges in order to grow. Don’t we all? Can we see these as opportunities for growth? Our family’s challenges have produced a richness, a depth, a caliber of faith unseen before. Totally worth it. Although Sophie has many challenges, she demonstrates perseverance that takes my breath away. She has overcome more in her short little life than many will overcome in their whole lifetime. I’m so proud of my girl.

Last week we walked into the Clinic for Developmental Disabilities at Children’s Hospital for the first time in our lives. As we approached the door, the name shouted at me, trying to shatter my heart into a million pieces. It’s never a place I imagined I would be going, where I will likely frequent over the next 15 years of Sophie’s life. How could it be my child who has a disability? To me, she’s an absolute delight. Of course she is. And then it hits me. Talk about a paradigm shift. A developmental disability of any kind never means that a person is not lovely or is disqualified from any part of God’s good plan. Duh. Right? But here’s the thing about me. I’m an intelligent person, and throughout my life I’ve placed a lot of value and importance on being intelligent. I’m so thankful that God brought me to this place as a mother, this clinic, full of people who are SO immensely valuable, so lovely, with so much to offer, despite physical and mental impairments. Life is no longer about brains, beauty, or brawn. Our society uses those things to measure a person’s value, but God’s economy is different. In His world, we just need to touch others’ lives and spread his glory. We can do that regardless of our abilities or disabilities. Each person whom he has created, he has called valuable, and he has uniquely gifted to impact the world for him.

Whatever Sophie’s prognosis turns out to be, she will always be special, loved, and worthy of love, because God said so (and because Mama Bear says so!!). Maybe this seems like a simple truth, but it’s hitting me in a very real way right now in my life. We are so quick to assign value to ourselves and to others based upon all the wrong things. No matter what kind of brokenness a person carries, we treat them as valuable because God has said so. Jesus didn’t come to die for the intelligent, for those who have it all together, for the picture perfect family. From his own mouth he explained that it’s not the healthy who need a doctor, it’s the sick. He often criticized and admonished the religious leaders, the schooled men of his time. Just like me, they were on their high horse and didn’t get it. I’m done on this high horse. I’m done worry about whatever it is that God has for Sophie. My hands are open, and I’m just accepting whatever it is he has for us. No conditions. No fear.

To get back to the appointment with the developmental pediatrician, I’ll say I think I’ve found a kindred spirit, as Anne Shirley would say. As I voiced my questions about WSS to her, she reminded me of the wisdom that I have chosen to live by (before she even knew me) in these last four years: We can’t look into the future. From a medical standpoint, it’s not even possible. We can’t determine how Sophie’s possible syndrome might affect her in six months or a year or five years. We can’t plot out the roadmap because, within each syndrome, some children are mildly affected while some are profoundly affected. Sophie is doing really well right now, and all I need to do is be ok with right now. I have often said that I just need to be ok with today. It was so good to hear this doctor reiterate that truth to me. Even though she’s not familiar with Weidemann-Steiner Syndrome, I appreciate the wisdom she offered about navigating a potential disability.

Even for those who do not walk in my shoes, I realize this is truly what God wants for each of us: To be ok with today; to recognize enough grace for today; to stop worrying, planning, wondering about “then;” just to trust him. Can I be ok with where I am today? Yes. Can I just let him take care of tomorrow? Can I just let him care for those I love? Can I just let him be in control? Yes. Yes. Yes.