Category Archives: Sophie’s Story

Last night and this morning I felt the dark cloud of discouragement, and despair, even, forming within my thoughts. Yesterday was Sophie’s IEP meeting, and while the team supporting and servicing her is totally awesome, it’s tough focusing on all the ways that she’s behind, or different, delayed, or disabled. Just hard. Period. She now has been labeled as a child with multiple areas of disability, receiving services in speech, occupational therapy for fine motor issues, and adaptive PE for gross motor issues. I confess, I thought of the many, many children born to all my friends, and so many of them are normal. On IEP days, I feel anger about that. I’ll admit it. When I’m forced to zero on on Sophie’s differences, when I’m forced to play the dangerous game of comparison, my heart feels troubled. I have to do it every now and then. But at the same time, I know it’s not where God wants me to live. This morning, I prayed, “Dear Father, just help me to be ok with today. That’s all I need to do. I just want to be ok with where we are today.” It’s a prayer I know I’ve prayed many times. I’m struggle, today, to be ok with Sophie’s differences. But I’m fighting to see and hold on to the many blessings that God is showing me in the midst of the struggle. So here they are…

Sophie is blessed to be part of an incredible program at Lancaster City Preschool, and to have a fabulous teacher and aide there. Sophie’s teacher spends a great deal of time working with her and doing those “extras” that all teachers do, for my child. She and her aide are sweet, and nurturing, and so exceptionally kind. Her private speech therapist and public school therapist, her occupational therapist, and her adaptive PE teacher are dynamic, down to earth, and skilled at what they do. She is blessed to be in their care.

Sophie has made friends. As I have struggled with this possible diagnosis for her, with her delays, even over several years, one of my biggest concerns was always how she would do with her peers, and how she would make friends, given her nonverbal status right now, and her differences to be seen down the road. But, she has made friends. Every day those friends greet her at the door of her preschool with smiles, giggles, and hugs. She is eager to see them each day. I absolutely love this, and it touches my heart that God has allowed me to see these friendships, speaking so directly to my own area of concern. Isn’t he good like that?

Better still … When we saw the geneticist, we learned that he has one other child patient in the central Ohio area who has Weidemann-Steiner Syndrom (WSS). Just one in this entire area. Yesterday at my IEP meeting at Sophie’s school, I learned that a child at Sophie’s school has this syndrome. Say, what?! Today, I met her mommy. And I found out that this little girl who has WSS was actually in Sophie’s class last year. I passed her mommy everyday in the halls and parking lot for almost the last year. What a sweet blessing. She is the other child that our geneticist diagnosed. Of all the places in Ohio that she could be, she’s here in Lancaster, at the exact same preschool as my daughter. Only God could do something like that for me. What an immense blessing. There are perhaps thought to be three children in this area who have the syndrome, one a baby, and it just so happens that these other two little girls – Sophie and Kloe – attend the same school. Just so happens. I know my Father sees me. I know he loves my child. I know he loves me.

God faithfully reminded me of the big picture this morning as I listened to some worship music:

“Come out of sadness
From wherever you’ve been
Come broken-hearted
Let rescue begin
Come find your mercy
Oh sinner come kneel
Earth has no sorrow
That heaven can’t heal” (https://www.youtube.com/watch?v=HELQyZNnR-g)

Sophie’s precious soul is eternal. Her life here may have brokenness. All our lives do have some form of brokenness. But in the wold that she was made for, there will be no more tears, no more brokenness. There is always hope. Though this journey may be difficult, I’m choosing to view it as my “light and momentary trials.” It’s not easy, and I’m not sure my heart is 100% there yet. But I’m making my choice: God is good, and he is faithful; he love us, and he sees us; he is always working for our good, even when our hearts feel like they’re breaking.

How Hairy are Your Elbows?

Hairy Elbow syndrome, they call it. A funny name, perhaps. But if you are the one with the extra elbow hair, it might not be so funny. Sophie has this excess hair, just in the forearm areas around her elbow. Interesting, that a genetic mutation could cause such a specific hair growth. It’s there. So it suggests Weidemann-Steiner syndrome. We will wait many months to learn whether or not this is the name for what our sweet girl carries with her for her time on this earth. It does explain all of her symptoms — nystagums, hypotonia, initial feeding problems, apraxia of speech, small stature, even facial features. It’s all there. Who knew? It’s a very rare syndrome that has only been described since 1989, and was only officially named in 2012, the year Sophie was born. As you can imagine, not a lot is known about this relatively new, rare syndrome, except its defining characteristics, many of which define our sweet girl.

So what’s the good news? Many have asked me how her appointment went, and I struggled to say, “It was good.” But, in the grand scheme, it actually really was. Some families receive news that the genetic mutation that is likely in their child is life-threatening, seizure inducing, or extremely life-altering. Weidemann-Steiner, from what we can discern, is none of that. Sometimes in severe cases it causes mental retardation, and my teacher’s heart breaks as I think of those students that I watched struggle with learning disabilities over the years. To think of Sophie going through those struggles. But, I refuse to live there. That is many years away for Sophie. I need only to be ok with where we are today. No grace for tomorrow yet, so I’m not going to be living there. And we don’t even know for sure whether or not she has this genetic mutation. But we know it’s a possibility. (We also feel like many of her delays are due in large part to her non-verbal status. It’s hard to learn your ABCs if you can’t sing the song, for example. I pray that things will indeed be very different once her speech catches up a bit.)

Even though some delays remain, the geneticist was very pleased with Sophie’s progress. And he is such a kind man. He enjoyed engaging with Sophie, rather than viewing her just as a case, a mystery to be solved, as some doctors would. We are blessed in the very doctor that God chose for us to see. In addition, this syndrome which he is testing for, as I said, is very rare, yet this doctor has, not one, but, two other patients with this syndrome. In this, I again see the loving hand of the Father, because if this doctor had not experienced this syndrome before, I wonder if he would even have considered it or noticed the characteristics.

Our kind doctor called this a sporadic and random genetic mutation, but I know with even more certainty that God chose this for Sophie, for our family. I cannot question his view of reality. I cannot see what is best for my family or my daughter the way the he can. Whether or not she has this certain syndrome, we have walked a different road with Sophie thus far than most parents will walk with their children, and our walk with her into adulthood will continue to be different. Still, I am convinced it is a road that our Father has lovingly chosen for us. I must believe that he sees what is best, even if I don’t understand it. I’m thankful that this syndrome will not threaten to take our child prematurely from our arms. I’m thankful to have my sweet Sophie girl here with me.

Perhaps by the first of the year we may have a name for this. And that may help us with insurance and with services down the road. But a name changes nothing. Sophie is who God created her to be, a beautiful, caring child, with a smashing testimony for his goodness and favor. We are blessed to be part of her story. We wait to see how it will next unfold. We wait to see what glimpse of God’s glory Sophie will get to present to her world.

“He is always right on time.”

Today I had my very first ever phone call from the school principal. Fortunately, it was not a case of my child having done something wrong. But Sophie has been having a really hard time adjusting to school. Her initial joy over returning to school has been squelched by a boy who likes to throw things. Because Sophie is nonverbal, it took me two weeks to learn what was troubling her. Each day when I picked up her from her classroom, she was sobbing. I figured she was struggling with the transition to school. Finally, after this had gone on for two weeks, her teacher happened to mention that there’s this little boy in the class who likes to throw everything. He’s just playing, but it’s pretty destructive and definitely not the way that the toys were intended to be played with.

I’m a little hung up on the two week time frame here. The parent of a verbal child would probably have known the first day that the child was afraid of another student. It took me two weeks of trauma to figure this out. I don’t fault the teacher or the school. It takes time to make these connections when the child can’t pinpoint for any adult what is upsetting her, and when upset over a new school year is quiet normal. I am thankful the connection was finally made.

Being the proactive parents that we are, we began to talk to Sophie about this problem at school and how she could handle the situation other than becoming extremely afraid and upset. We tried to incorporate some appropriate throwing into our play. We prayed about the issue. My concern grew when I talked to Sophie Tuesday morning before taking her to school. I asked her, “What are you going to do if this little boy starts throwing toys again?” With the most clarity that she has ever used to express her emotions, she pointed to herself and signed “cry.” I was thankful for the clarity of expression, but saddened that she was still terrified to go to school. When I picked her up that afternoon, she was sobbing.

I again asked her teacher how things were going, not because I want to be that helicopter mom who is always into all the business, but because my child literally can’t tell me how things are going. Had her teacher not said something, I may never have pieced together, out of context, the reality that she was afraid of a boy in her class who threw things. She reiterated that they were still working with the boy, meanwhile trying to console Sophie. It’s a tough situation, to be sure.

Yesterday after school I posted a prayer request, specifically about this little guy, for my Facebook friends. One of my friends from church wrote: “Such a big thing for her sweet little spirit. Praying God calms the situation. He is always right on time.” Those last words stuck out to me… He’s always right on time. I have known this to be true many times. What was God doing in this situation? After today, I marvel at that comment and the timing of these events.

Today I spent much time in prayer and resolved that if I had not seen an improvement in a month of school (because transitions for Sophie do take time) that I would seek action with the school.

Today the principal called me. Today she offered to switch Sophie to another class. This was certainly something that I had considered, but I figured that I would have to initiate that discussion and that I might be met with resistance because other classes were full. I had resolved to wait, giving the situation into God’s control. And today he swayed the principal’s heart to look at Sophie’s situation and call me. She listened to my concerns and identified as a parent. Sophie is not the one acting out, yet it feels as if she is being punished by being moved. She will have to start over with her transition. Yet, I would rather choose this a thousand times than have her deal with that little throwing boy for one more day. Since moving him is not an option (something about throwing off the distribution of “neediness” in the classrooms – the teacher in me gets this), I am willing to give this a try.

I’m often struck by the timeliness with which God answers prayers. How many times have I prayed about something and the very next day an expected or more often unexpected answer presents itself. He is truly faithful. And he truly is always right on time. Thank you, dear friend, for that important reminder. Give your burdens to God. Look for his answers. Trust in his plan as you surrender your worries to him. Even if it takes much longer than a day, he is always right on time.

In my last piece, I advocated for engaging and spreading compassion to families with special needs children when we encounter them. I’ve decided that I really can’t speak to the way to engage with other special needs children other than to approach them with compassion and to be unafraid, willing to engage. I can, though, give specific suggestions for relating to Sophie.

*If you want to talk to Sophie, it’s best to get her attention by saying her name, even repeatedly, or by getting down into her line of sight. Most of the time Sophie assumes that you are not talking to her, so if you actually are, you need to make sure she knows it. I imagine that this is true for other special needs children as well. Many are used to being ignored, so intentional conversation may come as a surprise to them.

*You may need to ask Sophie to look at you. I’m not sure if she will comply or not. But I’ve noticed that she gets away with ignoring people because she’s little and doesn’t often look up at them. It’s harder for her to ignore someone if she’s looking at them. But, if she’s not comfortable with you, my guess is that she will hesitate to look at you. And I will back you up. In fact, I already often instruct Sophie to look at the person who is talking to her. My son’s eyes are glued to my face, because in watching my mouth, his brain is learning how to speak. That’s not the case for Sophie, so she’s gotten used to keeping her eyes downward.

*Keep it simple. Since you know Sophie has trouble speaking, then yes/no questions can be helpful. (i.e. Are you excited about ____________. Do you like ________________.) Or, even something that doesn’t require a verbal response like a hand shake, high five or a hug. Sophie can give you a physical response when she sometimes cannot figure out how to engage in conversation.

*If you are talking to Sophie, be ok with the fact that I’m going to prompt her with how to respond to you, and I will interpret her signs. At home, we often have to force her to sign the words, phrases, or sentences for what she wants to express. It’s harder for her that way, it requires more effort, but she has to learn to necessity of communication. In order to teach that, I will prompt her when she’s in conversation with others. If I interpret her signs for you, continue talking to her as if you are understanding her signs rather than shifting to conversing with me about what she’s saying. In those moments, I’m just the interpreter; you are still conversing with Sophie.

*Because Sophie has always spoken with her hands, all her hand movements are very significant. Just like a child becomes bashful and hides in his mom’s skirt and only whispers to another adult, Sophie will “whisper” her signs. Her wave of “hello” is nothing like yours as you try to flag someone down across a crowded room. If she’s nervous, it may just be a slight wave down by her leg. Try to be observant to these little “whispered” signs and acknowledge them. We are teaching her the importance of signing where people can see, but social situations are nerve-racking for her because she’s nonverbal (and probably an introvert like Daddy).

*Talk to your kids about differences. Explain that Sophie talks with her hands, and that they can ask her about it. (You can too!) She loves showing signs when she’s comfortable with the people she’s talking to. Help your kids understand that it’s a difference, but not a reason to avoid, ignore, or think less of Sophie. Encourage them to try signing and help them understand that Sophie can understand anything they say to her (or about her). They can help her by including her even though she’s not speaking as they play. It’s ok for them to ask questions to me, to you, or to Sophie to better understand her or what she’s saying.

I hope that these ideas are helpful as you consider how you, as a part of Sophie’s community, can embrace her, support her, and love on her. She is so blessed by to have a community who loves her so deeply. It touches mama’s heart too.

Interacting with a special needs child is different than interacting with a “typical” child. It can create some discomfort for us, even as grown adults. Special needs children have differences, ones that we often do not understand. But, differences are everywhere in our world, so rather than focus on those things, I think we should focus on giving compassion.

First, we must understand something about Sophie and other children with disabilities. The harsh reality is that they can often be marginalized. In Sophie’s case, because she has never been able to speak, Sophie often ignores speech, somewhat marginalizing herself, understandably. She has lived in a world where everyone around her is constantly talking, but she can’t enter in. She’s always listening to what others are saying, but so much of the speech that she hears isn’t directed to her, so she doesn’t always realize when it is. There is a key difference between listening and hearing what’s said. Sophie hears all of what is said around her, but she doesn’t always listen, because she’s not usually the focus of conversation. Many times people don’t try to further the conversation with her once she doesn’t speak back. I imagine for people who don’t know Sophie, they just assume she’s bashful and let it go. Those who know Sophie don’t give up so easily. And that’s great. But what about the special needs children who aren’t known to us?

Children with evident disabilities are, unfortunately, often used to being marginalized and ignored in public. Think about it. When was the last time you passed a mom in the grocery store and commented “She’s so cute!” about her wheelchair-bound child? On the other hand, how many times have you made that comment about a typical child? We tend not to say anything to the mom with the wheelchair-bound child, because we don’t want to act as if we’re staring or giving unnecessary attention. But, guess what? That mom already knows her daughter is in a wheelchair. Giving attention to her daughter in a positive way isn’t going to do any harm. Silence, gawking, awkward avoidance — those things do harm. Those things make that mom and child feel out of place in a world where they desperately need to experience acceptance and support. I’m sure those who know and love them in their families, circles of friends, neighborhoods, churches, etc, do not do marginalize them (at least I hope so!), but unfortunately, society often does, simply because we don’t know how to handle this “different” child. Although you may be comfortable interacting with Sophie because you’ve known her for a long while, have you ever become part of “society” when around another special needs child who is not known to you? I know that I have. I didn’t know what to do, or what to say, or how to handle that child, even though I have my very own special needs child in my home every day.

When we went to the Fourth of July parade here in town, we marked out turf for watching the parade next to an older couple with their adult daughter. When the daughter tried to speak to me, excitedly announcing that Fairfield Union’s Band was her favorite, I realized that I could not understand a word she was saying. And I didn’t know what to do. I froze. Her dad interpreted her speech, and I gave a polite nod and acknowledgment of her comment to me. My own daughter suffers from a speech impediment, and I didn’t know what to do with this grown child. I became a part of the society that doesn’t know how to handle a disability. I felt awful. In hindsight, I wish that I had asked her father more about her. He spoke to us a couple of times, kindly offering a closer view of the parade for our children. I wish that instead of ignoring his daughter’s clear speech disability that I had just addressed it head-on. Because I’d rather be upfront about Sophie’s condition than have people wondering “what’s wrong with her,” thinking she’s mentally challenged because she can’t speak. See, I’ve accepted what’s “different” about Sophie, so it’s not uncomfortable for me to explain it to others. I don’t constantly go around “explaining” my child to those who are just passing by, for instance, as we walk down the street. However, if they engage us, I’m totally comfortable talking about her diagnosis. I wonder if I would have met a family who knew exactly what I was going through if I had just chosen to engage that day instead of maintaining a comfortable distance. Distance is more comfortable when differences are present. But distance is also shallow and sometimes uncaring.

Children with disabilities are just as much in need of compassion and acceptance from the world around them as are typical children. Perhaps, they need it even more because of their differences. I hope that the next time I find I’m in the presence of a special needs family, that I can engage, rather than distance myself from the discomfort. Jesus has given me compassion abundant for my daughter, so why not extend that to other children who are also in her situation? It might be uncomfortable to reach out to a family with a special needs child, but I believe the connection will be worth it. In my post next week, I will give some practical and (hopefully) helpful tips for engaging with special needs children like Sophie.

On the whole, my daughter is a happy kid. She’s a good listener, helper, and general sweetheart. Yet, while I imagine on some level Sophie has accepted her world the way it is because she’s never known any different, I also cannot believe that she hasn’t noticed her differences and felt some pretty intense frustration in the world of communication. Our integration of American Sign Language into our home has greatly eased her frustrations, but lacking and learning speech itself have still caused much frustration.

I’ve tried to imagine what it would be like to not be able to speak in a world where speech is utilized constantly. But I can’t imagine it. I just can’t. The closest I have been able to come to imagining what Sophie might be feeling is to imagine if I were completely color blind, walking through an art gallery or a beautiful park, listening to others discuss the colors, but not being able to enter in or appreciate the color myself. I can see the objects, I can appreciate their forms, but I can’t rave about the oranges of the leaves in the fall or the blue of a summer sky. I would feel like I had very little to offer in that world. So I probably wouldn’t say much at all. Sophie can hear and understand the spoken world around her, but she can’t enter in to it. I wonder if she feels she has nothing to offer at times. Yet, in her mind she knows she has thoughts, feelings, opinions, emotions, about everything. She wants to express herself, but she can’t. Frustration.

Up to a point, I think Sophie just assumed her words were coming later. But, my son, on the accelerated life-train, began to speak before 9 months of age. At 14 months, he will repeat anything he hears. This is Sophie’s art gallery or nature walk: Right in front of her face her little brother is getting his words, but she doesn’t have hers. Sophie will literally open her mouth to try and say something, and nothing will come out. You can see her mouth working, air being expelled, voice on, but the right words are not coming. Children with Apraxia know what they want to say, but the words just won’t come. She’s knows it’s a simple word; she sees speech as easy as breathing for the rest of us. Frustration.

When we sit to do her speech exercises Sophie tries so hard. She works. She knows the sounds in her mind. She wants to say them. But it’s hard work. One day in a moment of clear frustration during speech exercises, Sophie melted down, and I asked her if she wanted to get her words. Maybe it seems like a foolish and frustration-inducing question, but, Jesus often asked those he was going to heal if they wanted to get well. Wanting it is very much a part of the equation. And I think there was a time when Sophie maybe wouldn’t have said yes. But this time, she nodded, sadness and frustration on her sweet face. Yes, she wants her words. Frustration.

My heart breaks in moments like that. But then I have the chance to pick up my mom-poms and tell her “You. can. do. it. You. will. do. it. Your words WILL come, sweet girl. But we have to work.” And in that moment I talked to her about how Jesus can enable her to do all things. All things. I told her I believed her words were going to come because Jesus was faithful to help us. But sometimes in life, we have to work for what we want. At just 3 1/2, Sophie is having to work far harder than the average child to do something that comes as easily as breathing to most.

The verses in James about perseverance are ones that I claim over my sweet Sophie’s life: “Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, he should ask God who gives generously to all without finding fault, and it will be given to him.” (1:2-5) It is verse 5 that we chose in naming Sophia, which means “wisdom.” We trust that God will give her and us wisdom to navigate these difficulties she faces. The frustration is real, but it pushes us forward. And as we persevere through apraxia, we know it will not be without benefit to us and to Sophie.