Category Archives: Sophie’s Story

I’ve had quite a few people ask me lately how Sophie is doing at preschool, if she will go to kindergarten on time, if she will attend a regular school, etc, so I thought an update on her progress might be helpful to those who love Sophie and pray for her faithfully. We so appreciate each of you and we never underestimate the power that your prayers have had and continue to have in Sophie’s life.

Sophie’s first day of preschool, 2015

When Sophie began the school year in fall of 2015, about 9 months ago, she was just beginning to make some sounds and say very simple words (ma, up, go, ice, bye). She used many, many signs, and so we had some indication that she understood quite a bit, but we were unsure before she began to verbalize where exactly her cognitive abilities lie. As the year has unfolded and her verbal skills have progressed, we have been delighted in discovering the wealth of knowledge that was trapped inside her head.

• We discovered that Sophie can count to 20.
• We learned that Sophie can recognize almost all of the letters of the alphabet, most of the time, in any order presented.
• We found that Sophie knows every animal, even the weird ones, and all the noises that they make.
• We thought before but had confirmed for us that she knew all of her colors and shapes, as well.
• Most recently, in constructing Teacher Appreciation cards and Mother’s Day cards, we have learned that Sophie knows how to spell her name and can write it with hand-over-hand assistance.
• Sophie knows a lot of songs, though she cannot truly sing them yet.

So, having just turned four years old, Sophie has met some of her kindergarten benchmarks already! She has another year of preschool to complete before she would even be eligible for kindergarten, so I have little doubt in my mind that she will be ready to go when she’s five (although we will still have the option to do an additional year of preschool if we want to give her more time). I can hardly conceive of it. A year ago she was not speaking at all. In just 8 months, she went from the simplest of words to speaking in short sentences. It is truly astounding! In addition, at a mid-year developmental assessment, Sophie scored just below average for her age range, rather than being categorized as developmentally delayed, which she has been since four months of age. We are overjoyed to have finally shed that label and are continuing to work towards developmentally average and beyond!

Sophie will still require speech therapy for quite some time yet. Her apraxia is still at play in the extra difficulty that she has in formulating certain sounds which she should be able to form and in using the correct sound in the correct place. She’s got tons of sounds now, but her mind struggles to plan the right sound at the right time, which means that her speech is often difficult to understand. Our current goal with speech therapy is to increase her precision with vowel sounds so that she is more intelligible to those she speaks with. We probably understand about 80-90% of what she says. I imagine that outsiders would probably get about 25-30%.

Sophie spent three and a half of her four years and three months in silence, so it’s not at all odd to me that she is still learning about what to say when or how to act in certain social settings. She’s making a lot of progress there, beginning to learn what to say when, and I hope that as her speech improves and she learns social cues for speech, her social awareness will increase. In spite of her social differences, Sophie experienced beautiful acceptance a classroom full of sweet friends and two BFFs (pictured: Evelyn & Collins) on top of that. God truly blessed Sophie with caring friends and nurturing teachers. Even another child in her class who routinely struggled with behavioral issues consistently showed compassion to Sophie. Her teacher told me at our spring conference that Sophie was by far the most popular child in her class! This is totally amazing to me! Not because I don’t find Sophie wonderful, but because as adults, we are so focused on interacting with those who have something to give us in return. Seeing Sophie interact with her friends at preschool reminds me that friendship is not about what I can get out of it or what someone else can give me. It’s just about giving to others that you enjoy being with.

On the medical front, Sophie’s genetic testing for Weidmann-Steiner Syndrome has just been completed. Her test revealed that particular gene was normal! I was overjoyed to hear these results! So many happy tears! Thank you, Jesus! We return to the geneticist in July to see what our next steps may be. This test was run on just one gene, so choosing another gene to look at is, as you may imagine, like looking for a needle in a haystack. We may be at a dead end for now, which is totally fine because Sophie is doing so well. We don’t NEED to find an answer because she’s not deteriorating or failing to progress. So that’s very GOOD. It’s likely that somewhere in one of her many genes there is a minor deletion, duplication, or sequencing error, but this occurs in many individuals. It would account for the differences we have experienced thus far in Sophie’s development, but it may not be a named syndrome, and we may never know which particular portion of a certain gene is affected. As long as she’s doing well, it’s really NOT a big deal to know the specific gene and if it is a named syndrome.

Last day of preschool

As I reflect on this school year, I’m simply overwhelmed by how much progress Sophie has made. Every small step feels miraculous and wonderful! I am so thankful that in a year full of other kinds of difficulty for myself personally, God has encouraged my heart so much through Sophie’s progress. He has been faithful time and again. I know that he is enabling her awesome progress and blessing her with favor in addition. He has been so very good to our sweet Sophie girl! And I know he will continue to be. To think that when she was four months old, we had to question if she would live to see four years old… Now here we are with a developmentally “slightly below average” chatter box, romping around, loving life. So very good. Thanks, God.

Today is Childhood Apraxia of Speech Awareness Day. This speech disorder is one that has touched our family deeply, so awareness of it is close to my heart. Childhood Apraxia of Speech (CAS) is a developmental disorder in which the brain fails to naturally control the muscles necessary for speech. A child without CAS will develop speech with ease and through a typical process, i.e., certain sounds emerge at certain ages or in a certain progression. For a child with CAS, developing speech is hard work with lots of practice, and certain sounds may come with even more difficulty than others. CAS does not mean that the affected child cannot understand words. Nor does it mean the child is intellectually challenged. It simply means that the motor planning portion of the brain is not functioning effectively to produce speech, and so more work is required for speech to be learned.

Our daughter Sophie was diagnosed with this speech disorder shortly after her third birthday. She had no words and was unable to imitate even the simplest of sounds. We lived through three and a half silent years with Sophie before her speech began to slowly and painstakingly emerge. Now she is four years and three months old, and she is well on her way to functional speech. Through the silent years and the process of learning speech, our lives have been changed in many ways. I’ll share just a few of our experiences in hopes that they will help in raising awareness of this disorder that touches the lives of so many families.

Apraxia has caused me to reevaluate how I assign value to others. For the first three and a half years of her life, Sophie was unable to express to us anything that was going on inside her mind. So much of who she was remained hidden. But oh, how we loved her. Simply because she was. I came to a point where it didn’t matter to me whether or not she learned to speak. I wanted her to be able to speak because I knew the way it would shape her life not to be able speak. But I never for a moment considered her value as more or less based upon her ability to communicate verbally. I poured into her regardless of what evident gains I might see. For so long, there were literally no gains in speech, but still we poured, still we invested, simply because she was. Our journey through the silent years has helped me to open my heart and look on others as persons of dignity and value, regardless of their differences. I am no longer uncomfortable engaging individuals with differences of any kind. I see them as beautiful creations with undeniable value, simply because they are. In addition, I have been made so much more aware that every person (EVERY PERSON) has a back story that I cannot see. There is no room for judgment.

Apraxia has shown me the goodness in others. One of my greatest concerns with having a child with special needs is that Sophie would somehow be considered less by others, that she would be sidelined, less loved. Nothing could be further from the truth in Sophie’s life. Even though she began this school year with essentially no verbal abilities, she made two new best friends almost immediately. They wanted to learn to talk with their hands so that they could communicate with Sophie. More so, her entire class treats her with kindness and is protective of her. Her teacher tells me that Sophie is literally the most popular child in her class. Beyond the school setting, Sophie and our family are so loved and cared for by our family and our church community. When Sophie was diagnosed with CAS and we knew that we had years of expensive speech therapy ahead of us, our community banded together to raise money to help pay for Sophie’s speech. Tremendous goodness. Although I know many children with CAS suffer at the hands of bullies, God has thus far spared us from these experiences. It is my prayer that in raising awareness of CAS that families will be better equipped to educate their children and help them open their minds to acceptance, regardless of abilities or differences.

Apraxia has allowed me to glimpse miracles. When life follows an ordinary course, miracles are harder to see (though I firmly believe they ARE there). When life is full of difficult or even impossible circumstances, success feels miraculous. Each time Sophie gains a new sound or expresses new thoughts and feelings, I feel like I am seeing a miracle. To hear her say “mommy” for the first time, there are no words to describe how that felt. To actually hear her asking for hugs or kisses, or saying that she misses me, it melts my heart every single time. For so long she could not say these things. Given the challenges that apraxia can present, I consider it miraculous that Sophie has gone from no words at all to speaking constantly in short sentences in less than a year. While she still struggles to correctly articulate many sounds, making her barely understandable to some, she is constantly trying to talk and making great gains. Because of her struggles, nothing about Sophie ever feels ordinary, and each moment feels miraculous.

Apraxia has challenged me to see obstacles as opportunities. Because of apraxia, we have met many people who have poured into our daughter’s life, and into ours by extension. Because of apraxia, we have seen the generosity of those whom we do life with. Because of apraxia we had the opportunity to learn American Sign Language. Because of apraxia, Sophie is able to attend preschool and work with wonderful teachers and therapists. Because of apraxia, I furthered my pursuit of writing. Because of apraxia, we have banded together as a family. We have faced this challenge head on. We have worked hard. We have fought for our daughter. We have loved fiercely. Because of apraxia, I have been driven deeper into my faith, closer to the God who loves me. Because of apraxia, we are all changed, every one of us who know and love Sophie. This obstacle has become our opportunity to rise above, to fight hard, to grow, to deepen our faith.

Apraxia is just one of our challenges in this season of life. I don’t know what your obstacles may be today. I don’t know what challenges you face as a parent, as a person, as a friend, a child, or a spouse. But I do know that if you choose him, God will use those challenges to shape your life. Yes, I want you to be aware of Childhood Apraxia of Speech, but more so, I want you to be aware of a God who loves you and who wants what is best for you and for your family, no matter how big your obstacles seem or how challenging your trials are. We don’t mourn our difficulties with Sophie because they have made us who we are today, and I firmly believe that we are better for it.

“For nothing shall be impossible with God.” Luke 1:37

I received an unexpected phone call yesterday from Sophie’s developmental pediatrician’s office. A kind nurse, Joann, was calling to inform me of the results of Sophie’s recent developmental screening that we completed at home. I wasn’t expecting a phone call with the results; I was expecting to discuss her developmental status at her next appointment in the spring. I’d been caught unprepared, my heart not guarded. There’s a good bit of shoring up emotionally that I tend to do before these types of conversations. Immediately, my heart began to race. Mentally, I began to brace for another difficult conversation.

To my shock and awe, it was not a difficult conversation that followed. Hold on to your hats!! Sophie scored just slightly below the average for a typically developing child of her age. “Say what?!  What does that mean?” I asked the nurse. She explained: All the typically developing children in her group would be in one of three categories — average, above average, or below average. Those who fall below the “below average” group are considered developmentally delayed. Since she was four months old, Sophie has been labeled as developmentally delayed. She has scored outside the typical range for development in her age group. For four years we’ve carried that label. Four years.

At just four months old, Sophie was diagnosed with developmental delays.

My big four-year-old blew out her candles for the first time!

I can’t even begin to express my joy over this phone call! As a teacher, I’ve honestly never understood the parents and students who were pleased that their child received a D rather than an F. But now I totally get it. For the first time in perhaps her entire sweet life, Sophie is falling within the range of typical development for a child her age, just slightly below the average child. I recognize that there are still many areas where she is behind. But — I. Will. Take. It.

I’ve spent much of the past year accepting the reality that Sophie might always be considered developmentally delayed. I don’t like to live in the future, but there is wisdom in preparing the heart and mind for realistic possibilities. The hope of “catching up” any time soon was long since left in the dust. But here we are. Very close to being caught up. Wow. It feels good. Whatever genetic mix-up Sophie carries, its affect is mild.

The timing of this phone call was, as per usual for me, too precise to be coincidental. Right before I received this call, I had just shared on social media a favorite verse of mine found in Genesis 16:13: “She gave this name to the Lord who spoke to her: ‘You are the God who sees me,’ for she said, ‘I have now seen the One who sees me.’” Hagar, Sarai’s maidservant who conceived a son, Ishmael, with Abram, Sarai’s husband, gave God this name. She was running and hiding because her life was a mess. But because God saw her, she was able to lift her chin, return to her mess, and even receive God’s blessing.

Whenever I have felt overwhelmed, I have prayed this prayer, that I would know I am seen by God. There’s just something about being seen, being noticed, by the God of the universe. He always answers, without fail, in a way that I just can’t overlook or write off, like a surprisingly good phone call from a doctor’s office.

Dear God, you do see me. I don’t deserve it, but I am thankful.

Sweet Sophie, just a few hours old

My sweet Sophie girl is turning four years old today. I’m so blessed to be her mama. What an honor. I’m always amazed as her birthday draws near each year by how much she has changed since her last birthday. Each year, I find that I reflect on what the last year has held as she prepares to enter a new year. And of course, I consider how quickly time is passing, and how much further she will progress in this next year. (Dear Lord, PLEASE let that include potty training!!!!)

The better part of Sophie’s past year was characterized by frustration. Her inability to verbalize her thoughts, feelings, wants, and needs severely cramped her style. This was especially exacerbated by her brother’s ability to speak, which emerged at his tender age of 9 months (right around the time Sophie turned 3). My sweet easy-going, good humored, smiley little girl was largely absent this past year.

Sophie signs “love you”

When Sophie was turning 3, she knew only basic signs. We had not yet started teaching her American Sign Language. She had no words at all, only some spontaneous babble that really didn’t mean anything. In March, when she was just three years and one month old, we began to inundate our world with American Sign Language. Within a month, Sophie was signing upwards of 60 signs. By summer, she was signing well over 100 signs. I will never forget the moment she initiated her first signs to me (as opposed to just responding to me), signing “I love you.” When she finally had the ability to tell me something, to express her own thoughts, that was what she needed to say. There are simply no words to express how I feel in my heart about this.

Sophie began preschool shortly after she turned three, to continue state-funded speech therapy, and for exposure to children her own age using words to communicate, in hopes that this would aid her own language development. She remained silent. When school came to a  close, we pursued private speech therapy to fill the gap in school therapy over the summer.

This was when the magic began to happen.

Immediately, Sophie was diagnosed with severe apraxia of speech. Slowly, painstakingly, with great effort, and much practice, she gained the ability to intentionally imitate single sounds — ma, da, ba, pa. From there, she slowly began to put sounds together. By fall at 3 1/2 years old, after 5 months of therapy, she had about 20 basic words like mama, dada, bubba, bye-bye, more, go, etc. We worked so hard for those words.

Click here to see a video of Sophie’s speech progress this past fall, just five months ago: sophie_speaks_fall15

I cannot watch this video without a flood of emotions and tears, lots of tears, seeing how far she’s come in five months.

As winter approached, quite suddenly, Sophie began to try any and all words. In spite of her continued struggle with apraxia which dramatically affects her pronunciation, her speech light bulb has turned on. We are overjoyed! She is now about 75% intelligible to those who speak with her daily, and probably 25% intelligible to the outside world. But, what a huge difference from our silent Sophie of one year ago! You can see Sophie’s current speech progress here, as she reads her favorite book “Newton” with me: sophie_reads_newton

Sophie enjoyed Dora cupcakes with her class to celebrate turning four

As a four year old, Sophie now has hundreds of words and signs. She can count to twenty and knows all of her letters, shapes, and colors. She knows emotions such as happy, sad, scared, and frustrated. She can name all household objects, foods, familiar people and toys. She runs around her environment naming things simply because she CAN! She still has moments of frustration, but I would not characterize her days by this trait any longer. Now she just seems happy.

Sophie at five months old

As we close her 3s and begin her 4s, we see a completely different child. It’s almost like we’ve gone back to the child that we started with, actually. Sophie has always been easy going, sweet as a peach, and of good humor with lots of smiles. As a three year old, that demeanor was largely absent. Her frustration over her lack of speech trumped everything, causing so much frustration, many tantrums, and few smiles. But now that she’s speaking, my sweet peach is emerging once again.

Sophie enjoys life. She spins around in circles until she’s too dizzy to stand, giggling all the while. She loves to be tickled. She loves to cuddle and to read books. She eagerly enters her classroom each morning, excited to greet her friends and play.

Sophie insisted on wearing her “cape” over her party dress on her fourth birthday

We have learned more as a family and as followers of Christ than I could ever explain here in the silent years, and we continue to learn now that Sophie is verbalizing. Most of all, we are aware of how awesome our God is as we have watched him do beautiful, miraculous things in Sophie’s life. When she was diagnosed with developmental delays at just four months old, our future, her future, held so much uncertainty. But God has met us at each and every moment; he’s carried us through many of those moments. He’s shown us over and over that nothing is too difficult for him. He is Sophie’s creator, and he is doing beautiful things with her life.

As Sophie turns four today, I pray that Jesus will grant her a year filled with his joy as she continues to learn to express herself verbally. And most of all, may her words ever glorify his goodness.

Ah yes, the dreaded social gathering, where the child struggling with CAS will be under the gun to say words out loud. The struggle is real. If you have a child with CAS, you know what I’m talking about. Social gatherings are intense for a child with Childhood Apraxia of Speech.

My daughter is blessed to be surrounded by the most loving and caring family and friends. All of her aunts, uncles, grandparents, great aunts and great uncles, church friends, everyone — they love her to pieces. I’m so thankful that we have a family who is loving, accepting, kind, and wise. I realize that not everyone has this same blessing. I also realize that acceptance does not always equal understanding and knowledge. My family and friends have, fortunately, sought to understand Sophie’s diagnosis and celebrate her growth with us continually. Still, I realize that sometimes significant people a child’s life are just at a loss as to what to do with said child who has CAS because he or she can’t communicate the way children his/her age typically can. How can I connect with this child whom I love in the deepest way possible? How can we communicate and bond without speech? Why does this child struggle so much to speak to me when we are together? That last question is one I hope to shed some more light on, which will hopefully also shed light on the first two.

I’ll get right to the answer in case you don’t want to finish reading this: Social settings can often create anxiety for children with apraxia of speech, which makes speaking even more difficult than it already is. Imagine with me; put yourself in their shoes. They are around a bunch of people who want to talk to them and who are asking them lots of well-intentioned, easy questions. They want to answer; they know the answer. But the nerves get the best of them. Even adults can become nervous in social situations which are part of their everyday routine. Imagine for a child who struggles to speak how that pressure becomes magnified. The closest analogy that I can come up with that helps me imagine how Sophie must feel in social settings is to imagine if I were invited to a social gathering of native French speakers. I took four years of French, but my understanding is limited, and my speaking ability is even further limited. Even back in high school (more than 10 years ago!) when I spoke French much better than I could now, I still felt anxiety over whether or not I was pronouncing words correctly, if I would understand the other person, if I would be understood, if I would remember the correct word when i needed it. I would probably feel like I would have very little to offer in that gathering. So imagine going to such a party, the native language of your choice, and the anxiety that you would feel. It certainly would not help you communicative abilities in that foreign language. The pressure would dam up your abilities even more than the natural language barrier did in the first place. To me, that’s what Sophie experiences when she is in a social setting, except that she does indeed understand every word that is spoken. But in her speech, there’s the concern of being understood, pronouncing things correctly, remembering the right word, etc. As an adult, I would find the pressure of this foreign language gathering hard to cope with. My almost-four-year-old certainly wouldn’t be able to cope any better.

I am in no way advocating that family members or friends shouldn’t engage children with apraxia. But, I think that it is helpful to take cues from the parents about how to make the child most comfortable. For instance, my daughter knows that I understand most all of her approximations, so she’s more comfortable trying to talk to others when I’m around because I can help her. In addition, for my daughter (but maybe not for those who have sensory issues), sometimes playing or touch is a better way to connect than a continual pursuit for dialogue. The hardest Sophie laughed this holiday season was when her grandparents tossed her up in the air and tickled her. She was having a ball, and the words began to flow more easily as she had fun and her nerves eased.

Regardless of which way is best for engaging a child with apraxia, acceptance is key. Child and parent alike need to experience acceptance regardless of what the child is comfortable with. The best thing that extended family members and friends can do is show love, support, and acceptance. The parents of a child with apraxia are desperately desiring their child to speak, for him or her to be accepted and to engage with peers and family members. Feeling judged because that’s not happening YET helps nothing. (We are fortunate not to have experienced that judgment, but I know it’s out there.) If you know a child with CAS, I would encourage you to openly dialogue with the child’s parents about the speech disorder, to understand what that child you love is experiencing, and to find out how to best connect with that sweet child who struggles with speech. I guarantee that he wants to connect with you just as much as you want to connect with him; he just may not know how to do that. Find a way to come down to his level, find other ways to bond, and you’ll be surprised to see that you don’t really even need speech at all to make that connection.

Let’s be honest, all us mommies play a dangerous game. We try really hard not to. And sometimes we do really well at it. Sometimes it’s easier at home, in our normal day to day routine, to avoid this game. But throw in a play date, a verbose younger sibling, or even a party at school, and our minds are instantly playing this dangerous game. That child is speaking in complete sentences, and my child cannot utter two words together. Heartbreak for the parent of a child struggling with Apraxia. The comparison game. It’s deadly to our happy, our self-confidence, and our peace.

Because our oldest daughter is the one with delays, we didn’t struggle with the comparison game at first. We had no point of reference. Sure, we had friends who had kids, but we weren’t around them enough to realize her delays. To us, she was just perfect. Even now that her delays are realized, no amount of difference or atypical development could ever persuade me to love her less. But the comparison game still gets to my happy.

My first experiences with the comparison game came through several different play dates. I’ve got friends; they’ve got kids; we need some company; so we play-date. It’s great. Until you see your child who is OLDER than your friend’s children, but whose development is delayed compared to theirs. It’s heartbreaking. I just wanted to run back to the safety of my house where I could enjoy my child exactly where she was, without worrying about where she wasn’t.

I managed to steal back some of my happy that was squelched by the comparisons I saw during those play dates in the early years. And then my son came. It’s even harder not to compare siblings, because then the comparisons become a part of your day to day routine. They are always in front of your face. There’s always another typical child to compare your developmentally atypical child with. And of course, my son has been on the accelerated track from day one. He began verbalizing before 9 months of age, easily. He’s now 18 months old and speaking in 4-5 word sentences. It was truly very difficult at first not to compare the two of them when he seemed to be reaching milestones that his 3 year old sister had not yet mastered. There was heartbreak in seeing the ways that he was achieving when our daughter was not yet achieving. Without all these comparisons we could just enjoy Sophie. That’s what we wanted to do, and that’s what we learned to do, in spite of the many comparisons that threaten to steal our enjoyment of her.

Even if you aren’t (or are no longer) playing the comparison game regarding your children, there are many other ways in which we fall into this game. We compare our bodies with others’ bodies — are we thin enough, are we overweight, are our muscles as toned, is our hair as nice, do we dress as nicely? Is our house as big? Is our wallet as full? Are our cars as nice? Do we take as nice of vacations? Is our job as cool? There are so many ways in which we compare our lives to others. And all it does is steal away our joy and our peace, our acceptance of who we are created to be.

Because you were meant to be you, and I was meant to be me. I believe that God created me precisely and placed me in exactly this time and place, for a reason. In the same way, I believe that it is no mistake or accident that my daughter is going through the trials of apraxia. I believe that she was created exactly the way she was for a purpose. If I compare her (or myself) to someone else, I’m losing sight of the fact that she (and I) was never meant to be someone else. She was meant to be her. I was meant to be me.

I’ve learned that it’s better to focus on being the best me that I can be, and to help Sophie focus on being the best that she can be, rather than worrying about why I don’t seem to measure up to somebody else in some certain way, or why Sophie doesn’t “measure up” to the achievements of others her age. Those comparisons never get me anywhere except back to heartbreak alley. They still pop up, even though I try to avoid them. But on the whole, I’ve learned to accept myself, strengths and weaknesses, and my daughter, and my son, strengths and weaknesses included, just for who we are. It’s my job to help them be the best version of themselves that they can be, rather than to try and help them become someone else entirely. Don’t our experiences make us who we are? And would we want to be robbed of even those hard times? Because they did create in us the person that we are. In the same way, I don’t want to rob my children of experiences which will help them grow and turn them into the best version of themselves.

We are all so thrilled about Sophie’s newfound ability to communicate her wants and needs verbally. It’s so great. But it can also be really frustrating. Why? You ask. Because the apraxia and hypotonia are not gone. So, what you have is a four year old mentality (vocabulary, opinions, feelings) with a one year old’s verbal expression. We learned soon after she began to speak that she knew most of the 26 letters of the alphabet, and recognized them in random order, along with many of her numbers. We’ve discovered that Sophie knows a lot of stuff that’s been trapped inside for a long time. Just last week she was naming bizarre animals like the octopus for her teacher. Other times, I just cannot understand her to save my life, and she can get frustrated in these moments. It’s necessary and beneficial for Sophie to continue in speech therapy to more quickly refine those sounds and close the gap of delay in which she currently stands.

Even though we do experience some frustration with these ugly reigns of apraxia and hypotonia that keep Sophie’s speech held back, we do also get some humor out of the deal. For instance, I find myself embarrassed and needing to explain to people that we do not use the F-word at home… As Sophie has played with different sounds, I have begun hearing that word very frequently. It’s a bit shocking at first. So I explain to people (when we are at public places like church, or the library, or the hair salon, or a friend’s house), she’s not repeating a word that she’s heard; she’s trying to say something else and that’s what’s coming out. Thank GOODNESS we have the F sound and the K sound down …. In time, I know that she will sort out the sounds she is trying to say. But in the meantime, if you hear the F-word 1) Don’t judge me; and 2) Just ignore it. (You can add a 3 — Laugh a little with me, if you like.)

Laughter helps me keep perspective during this new challenge of parenting Sophie. I’m thankful for the challenges, because I know that without them, God’s grace just wouldn’t be as evident to me. It’s the struggle that allows me to see the beauty, the miracles that are happening in her life every single day. My son’s growth is every bit as miraculous, but because he’s “typical” I don’t recognize the great grace poured out in every one of his days. I’m thankful for the struggle, because it makes us more aware of God’s goodness. It opens our eyes to beauty that we wouldn’t otherwise see.

With all that Sophie has struggled through, we have released her into God’s hands, again and again. And we always find that he is so faithful to reassure us of his care for her. As I wrote my last post and expressed my desire again to release her into God’s hands, no fear of what the future may hold, my loving Father was so quick to show me everything that is actually going on in Sophie’s head by turning on her “speech lightbulb,” as I like to call it. I wonder if all he wanted was for me to relinquish control and embrace her future, trusting that he does have the BEST plan for her life. I know I’ve made that choice time and again in her almost four years of life. It’s probably a good choice to make daily. I love my children fiercely, but I know their Heavenly Father loves them even more. No amount of my perceived control over their lives can get them to heaven. Only God can do that in his loving and mighty plan. Holding on with a death grip won’t do anything but suffocate them and tire myself. Giving them to God, that will actually make a difference. May their hearts always be turned towards the One who created them and loves them with an everlasting love.

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.