Category Archives: Sophie’s Story

Finding a Why in Sophie’s Story: Special Needs Ministry at Church

Seven years ago this June, my family’s special needs journey began. Sophie was four months old, and while she was meeting milestones like smiling, babbling, and rolling, her doctor discovered that her muscle tone was incredibly low. This, I now know, is a big, big red flag for developmental disabilities. Over the course of that first year in our special needs journey, as we waited and watched to see what Sophie would do, and as we began the barrage of tests and doctors, a never ending rabbit hole, searching for answers, God’s question to me resounded loudly: “Do you trust me? Do you trust that I have chosen the best plan for Sophie?” My answer was and continues to be, “Yes.” But in the past several months, I have begun to see the big-picture puzzle pieces clicking in to place. This is not just God’s best plan for the life of one child. This is God’s best plan for my family. This is God’s best plan for our church. This is God’s best plan for our community. This is God’s best plan for me. Because I have a child with special needs, God has opened my eyes to a great need in our community, which I would be blind to, if not for my sweet Sophie.


I recently started attending a small group for moms of special needs kids, and what I’m hearing over and over again is this heartbreaking statement:

We can’t come to church because our child has special needs.

This breaks my heart! Of all the families, special needs families are ones who perhaps need church ministry the most. The statistics about stress, anxiety, illness, fatigue, financial strain, and divorce are staggering in these families. There is a whole community of people who we as a church should be ministering to. God has brought this into my view over and over again these past few months. I can’t escape it. Everywhere I turn, he’s bringing people across my path to draw my heart and mind back to special needs ministry. I’ve been having one of those megaphone experiences with God. You can’t not hear it. You can’t look away, because like a focused parent, he keeps turning my chin right back to look where he wants. From every angle these past few months, God is bringing before me a special needs ministry at Life Church. This is not something I ever envisioned for myself, and yet I find it is something that I HAVE to do, because it is something that God envisions.

Last week, I received a text from a friend, Debbie, about a friend of hers whose 5 year old son has autism. Their family has been unable to attend church because of his needs. She wanted me to reach out to them, and gave me her friend Ginger’s number. She was excited to hear about my desire to have special needs ministry at Life Church.

Fast-forward to that evening: I took the youth group to see the new movie Breakthrough. I arrived early and stood near the door to pass out our tickets. As I stood there waiting, a young family came in, and their little boy, about 5 years old, politely said, “excuse me, are you in the line for tickets?” I explained that I was not, and the family moved on. But this little guy took a shine to me, and he kept coming back to see me over the course of the next 20 minutes as he waited with his family. He introduced himself, he asked my name, he invited me to his house. He wanted to know what movie I was seeing, and what snacks I was buying, and he shared what he was seeing and buying as well. Over the course of these four or five exchanges, his mom apologetically called to me, “I’m sorry he’s bothering you!” To which I responded, “that’s ok, I work with children! He’s fine.” I truly could not have been more pleased to be passing the time with this cutie! When I told her he had invited me over and shared their address, she chuckled and mentioned, “He has autism, so he doesn’t really understand some social boundaries.” I quickly reassured her that I understood, because my daughter has autism too. We went our separate ways and saw our movies. Twice in one day, I thought, God has brought special needs kids back to my mind. Wow.

After the movie let out, I stood talking with our church family. I turned around and saw this same young family coming towards me with my very excited friend Debbie. She was exclaiming, “Catherine, this is the family I was texting you about earlier today! This is Ginger and her son who has autism.” I stood dumbfounded. I know God crossed our paths that night for a reason. His eye is on these families. His heart is for them!

As I prepared to share this message with my church family this past weekend, I was overwhelmed with the realization that this is why I’ve been on this journey. Many people search for a why when difficult things happen in life. Honestly, I’ve long since given up on that quest, and I’ve made my peace with our life, because I trust my God. I wouldn’t change Sophie in any way. I wasn’t looking for why anymore, and yet suddenly I found a big piece of that answer. God will always use any difficulty in your life if you give it to him and walk in obedience. He wastes nothing. Opportunities will arise out of those trials, but it is our job to stand up and grasp them. To do something with the opportunity. To act. To obey. To find MORE in this life than our own happiness or self-service. So I am saying, “Yes.” Yes, to whatever God has for this ministry. I hope you can make your peace with your own why’s, and I hope that in some way God opens a door of opportunity for you to use your experiences for his kingdom. And I invite you to join me in this new ministry, whether you go to my church or not. I am happy to help other churches launch similar ministries so that we can reach more and more families. In whatever way you need to today, say “Yes” and embrace his opportunities for you.

2 Comments

Filed under Life Stories, Sophie's Story

A Thanksgiving Story: Chutes and Ladders

One of my favorite times with my son Micah these days is our afternoon time when Hannah is napping and Sophie is still at school. It’s our special time of day where we get to be together just the two of us. As the middle child, he really needs that time. Sometimes we bake together. He loves to help. And sometimes we’ll play cars, or blocks, or hide and seek. But most often Micah will ask me to play a game. He’s just getting to the age where he understands games well, and I think he perceives that I enjoy games, too.

Recently, I decided he was ready for Chutes and Ladders. It’s a bit more complex than Candy Land or Memory, but he picked it up quickly. He also quickly picked up how to cheat. If he could see a ladder ahead, he would jump two squares while only counting one number so that he could get ahead. Or, he’d count a square twice if he realized he was going to end up going down a chute. The only problem is that all his attempts to control the game didn’t always lead to him succeeding overall, or even in the very next turn. He’d try to manipulate one turn to avoid a chute or gain a ladder, only to end up at another chute on the next turn, because of the square he jumped on the previous turn. Micah quickly became so focused on controlling the game — avoiding the chutes and finding the ladders in the game — that he ceased to enjoy the play. We stopped in the middle of one of our games to talk about this. I explained how his attempts to control his game weren’t really helping, and they were just causing him to not enjoy playing. When he quit worrying about controlling his every move on the board, he was able to return to enjoying it, even if he did have to go down a few chutes. He learned that those few chutes didn’t determine the outcome of the game, nor how much he enjoyed the game.

Isn’t that just like life? Maybe it’s just me. I know that I have spent large amounts of time trying to control each detail of my life to work out “just right,” or worrying about each detail that feels out of control. But then the next turn, despite my careful efforts to control it all, I just ended up going down that darn chute. We can waste a lot of energy and thought worrying about things we can’t control anyways so much that we don’t enjoy life. Those things don’t control the outcome for us either. But we are quick to lose sight of that. In the face of a job loss, a diagnosis, an addiction, an illness, a death, we can sometimes lose sight of the fact that it will all be ok in the end. I’m not saying that we must enjoy always the chutes of life. There are moments of deep grief and pain that must be endured. But we can’t allow those to rob us of our foresight of the outcome, or of our joy at playing the game either.

Sophie’s autism diagnosis has been hard for me. Really hard. But I’m learning that I can’t let that steal my joy. There’s still a whole lot to enjoy about this game, even though it looks different than I anticipated. This week in response to my pastor’s message on giving thanks, I recounted the different things I had to be thankful for specifically because of autism, that I would never have been blessed by without this diagnosis.

There are people I have gotten to know who I would never have known. Many of them. And I am so thankful for each one. Multiple speech therapists whom I will always tear up when I think of, because they literally gave my child her voice. Patient, kind and gracious educational aides who have helped Sophie with tasks that no one but her mother should have to do. Teachers who have loved my little girl like their own, who have rejoiced at each hurdle she overcame. Little friends who taught this grown up about true friendship. I tried to imagine what my life would be like if I didn’t know these people or hold these memories of them. It felt barren. These people have brought a richness to my life that I would otherwise not know.

And there are also so many lessons I have learned, ways that my faith has grown, because of this diagnosis. I have learned to live in today, and not the future. I have learned to trust in a deeper way. I have overcome fears. I have developed faith-filled friendships, some where I have walked before another mama going through this, and some where I have walked behind another wiser mama. I have learned to lighten up, and learned to be more patient. So while I may continue to rage at the brokenness of our world, I find that I can also be thankful to my God who is always “working all things for the good of those who love him who are called according to his purpose.” Even for autism.

Whatever your chute is, can you trust Him enough to say thank you and trust anyways? Can you grab ahold of your blessings and your joy in spite of the bitterness of the slide? Thankfulness is a choice. It is an exercise in faith. It is a very good place to begin if you’ve lost your joy of the game for the chutes you’ve tried to control but had to slide anyways.

Leave a Comment

Filed under Life Stories, Sophie's Story

Sophie’s Story: Diagnosis Six Months In

Six months ago today Sophie was diagnosed by her school psychologist with Autism. After six months, there is still a part of my heart that breaks to write that sentence. There is still a part of my heart that denies its truth. I wonder if there will always be. I don’t know. I do know that there will for certain always be a part of my heart that rages against what’s broken in our world. Sophie is a beautiful creation of God, but she, like allllll the rest of us, is not free from the reaches of sin and brokenness. I rage against cancer. I rage against drug addiction. I rage against so many wrong things that we accept as our identities in this broken world. So maybe there will always be a part of me that rages against autism. But what I have realized over the past six months is that none of that is a reflection of my acceptance of my Sophie girl, just as she is. I used to feel guilty for being angry about her diagnosis, as if that anger was some rejection of her. But it’s not. We’re allowed to be angered by the things that are wrong in our world. Time has allowed me to see that each of my children has a “brokenness diagnosis,” though they all look different. There’s no reason to single out autism as some sort of worst case scenario in the “brokenness spectrum,” if you will.

Six months ago I sat in a meeting room at her preschool. And I listened as item after item on her screeners pointed to autism. They were like giant boulders, crushing my heart, weighing me down in utter heaviness. There’s really no other way to describe it. Such heaviness. In those first weeks of raw grief, compounded by the loss of our dear Granny, I mostly functioned in disbelief and doubt. Disbelief of the diagnosis, and doubt of the future. There have been many valleys in the last six months. Many frustrations. I’m not proud of the moments I lost sight of the big picture, of the moments I lost sight of the good, and the moments I didn’t cling tightly to the truth of God’s promises. And definitely a few moments where I completely lost my chill. But as we’ve approached this six month mark, I’ve taken the time to reflect. If you don’t reflect often, I encourage you to make it a practice in your life. Looking back for markers of God’s faithfulness in your life is a powerful faith builder.

Six months ago I had so many apprehensions about how Sophie was going to do in kindergarten. I knew that academically she was ready, but I had some wild notions about how her ADHD might interfere with her academics. (Will she ever learn to read?!?!) And I had concerns about her sensory issues, her anxiety, her muscle tone’s never-ending implications with everything from handwriting to bathroom needs. I had concerns about her transitioning to a new team of therapists and aides, to a new school with “big kids” around. Reflecting back on these last six months has served as a important reminder that God is both worthy of our trust and worthy of our praise.

While our summer just post diagnosis did indeed threaten my sanity at many moments, my time spent with other moms helped me to realize that this is a totally normal mental state for us in this stage of life with little ones. We’re all on the crazy bus together. Moms, if you’re starting to feel like you’re alone on the crazy bus, call another mom and talk for five minutes. That’s all it will take for you to know you’re not alone. Better yet, spend time with her and her kids. Then you’ll see firsthand that your kids are just a normal kind of crazy, even if they are “on the spectrum.”

And now, to the point of my update. How is kindergarten? So good. Sophie is rocking kindergarten. My Jesus took the time to put both adults and children around her who would love her and support her. As was the case in preschool, Sophie is loved by her classmates. Her teacher commented that she has an “unusually kind” group of kiddos this year. That makes me smile. I think she has an unusually kind teacher as well. She is a great match for Sophie. Sophie is very friendly with her peers and is accepted fully by them. She’s adjusted to the routines and rhythms of school. And she finally knows which days she has library, or art, or music class. While she’s had to overcome some anxieties at drop off and pick up times due to the noise and commotion, she has boldly soldiered on, even when she’s anxious. God love those noise canceling headphones!

This October I had the opportunity of leading a group of kindergartners through the Halloween party that the four kindergarten teachers had put together, which consisted of six different centers that 90 children worked their way through. I had a group of 12 kindergartners. What an experience! Some of them were your classic over-achievers, coloring all inside the lines and whatnot. And some of them were just as scattered as my sweet girl. I had to help them gather up their items, hold the discarded pieces of their costumes, and encourage them to rush to the bathroom when it looked like they might not make it on time. In sum, it was eye-opening to see the variety of stages of development that all kindergartners are in. Since there’s only one kindergartner in my house, this was a new view for me. Perspective is so helpful for the special needs mom. Yes, my kid has issues. EVERY KID HAS ISSUES. And every kid has always had issues. And WE ALL TURNED OUT FINE. It’s going to be just fine. Calm down, Mamas.

And, as for her academics, Sophie has grown in leaps and bounds. She is indeed reading! My little book worm, nerdy, book-loving heart is doing flips! I LOVE reading with my Sophie-girl. When we got our list of sight words in August, I had some questions about how that whole thing was going to go. But it has gone great. Sophie mastered her first list of sight words and earned herself an M on the report card. (Kindergartners get L for limited, P for progressing, and M for mastered to help parents see where their strengths and weaknesses are.) Her handwriting is coming along, though this is an area where she will have to continue working hard.

What am I learning as I move through these first six months? What has my reflection shown me?

Keep trusting. God has been good, and he will be good.

Be ok with today. Even as I write this and recount all her great progress is kindergarten, my mind flits to first grade. But will she be ok in first grade? Doesn’t matter. We’re not there yet. And when we get there, his grace will be enough.

Don’t be isolated. Crazy mom syndrome just gets worse when you’re alone for too long. I feel like this is true in spades for special needs moms. Us Mamas need each other. I am thankful for my mom friends. Phew. Jenny Jessie Jacqui Lindsey Chelsi Marie Lara Hil Carmen Lauren Lisa Stephanie Amanda Naomi Kristine I’m lookin at you girl. If you’re out there thinking, Man I need a mom friend, hit me up. I will be your mom friend.

I’m relieved and glad to feel like I am starting to finally regain equilibrium. Not every day is a good day, but I think every mom who has to get three little children out the door by 8:30am will tell you that not every day is a good day, autism or no autism. The truth of the matter is that Jesus is in each day, if you look. His goodness and grace are alongside even the difficult moments. But you have to look. It’s easy to see the yuck of the day. But the search for Jesus is rewarding and life-giving. It’s worth the look, even if you have to look back to find it.

Leave a Comment

Filed under Sophie's Story

Sophie’s Shoes

These shoes. Tiniest little white Nikes you’ve ever seen. In this picture, my youngest daughter Hannah is wearing them, standing next to big sister Sophie in her barefeet. We’ve just been traipsing around the yard. But once upon a time, they were Sophie’s shoes.

Sometimes I unpack a box full of Sophie’s things for Hannah and just savor the fond memories of Sophie’s younger days. Her cute little diapered butt crawling around in that ruffled skirt. A fancy church dress with all the frills. The t-shirt she wore in this picture or that. Other times, I pull out an item like these shoes, and I’m transported back to a very different time in my life.

Why would anyone buy lace up shoes for a baby? You might wonder. And they look to be hardly worn! Being Nikes, we all know they weren’t cheap. Was this just a first baby thing where you splurge on a super cute tiny version of something? No. These were Sophie’s therapy shoes. They had to be lacers because she had custom made braces for her ankles. Her little ankles were hyper-mobile, too flexible for her to stand up when she should have been able to. Because of her hypotonia, Sophie started physical therapy at about five months old. These tiny shoes take me right back to those home therapy visits. And boy do they make me realize exactly how far we’ve come. It’s hard to see that in the day to do. I forget the challenges that Sophie has already overcome, her grit, her determination, her pride in finally being able to do something that was difficult for her. Sometimes it’s all too easy to focus  on the every day struggles of autism. It’s much more difficult to keep in mind what an overcomer my Sophie is.

Laundry basket therapy, where Sophie first learned to pull up to her knees in her tiny red spandex hip supporters.

This week she started kindergarten. It felt a little anti-climactic to me because it’s like the fourth year I’ve taken her to her first day of school. But these tiny shoes made me realize exactly how huge this moment is for us. The fact of the matter is that any number of very serious conditions were on the table in Sophie’s first year of life, when she wore these tiny shoes. But exactly NONE of those conditions were ever found to be her diagnosis. Autism. Yes, it is still very hard. But it is so important for me to remember what it is NOT for Sophie, based on those early days of her journey.

A kind lady in my church, a follower of Sophie’s story, recently asked me, “Does it ever get easier to accept?” speaking of our autism diagnosis.

In all frankness, I told her, “No.” But today I would add to that “not yet.” Because today I have the perspective of the past.

And, not the least bit coincidentally, the same day she asked me this, my pastor taught on “Anticipating Heaven” and having a “God’s Eye View” of the troubles of this life. Yes, autism is very hard to accept, but someday, this diagnosis will be a memory, just like her physical therapy days. And someday, when all things are set right, my sweet girl will be free of this neurological disorder forever. She, like the rest of us, was created for far more than this broken world allows. We live with autism in this life, but we anticipate a life of wholeness, for all of us, in what is to come. And in this there is hope.

Leave a Comment

Filed under Sophie's Story

Sophie’s Story: Closing the Preschool Chapter

The end of the school year always brings cause for reflection for me. This year I feel especially reflective because Sophie’s preschool chapter is coming to a close. I’m not just reflecting on this past year, but on three years in this great program.

Sophie was privileged this year to be with the same teacher whom she had her first year in preschool when she was three and still non-verbal. It is always an eye-opener for me when people who haven’t interacted with Sophie for a long time get to interact with her again. They are blown out of the water by the amount that she has changed and the progress she has made. This was especially important for me this year as we received her educational identification of autism. Mrs. Bausum has been constant in reminding me of how much Sophie has grown. And she reminds me that this is an indicator of how far she will continue to grow.

Besides being a wonderful support for me, Mrs. Bausum has been a phenomenal teacher for Sophie. She LOVES her preschoolers like her own children. She supports them and challenges them. She is endlessly patient and kind, even in the midst of meltdowns and challenging behaviors. She’s one of those teachers who you know has forever changed your lives. We are so grateful to her for all she has done for us. She also had a fabulous team who helped her and loved Sophie well: Miss Mills, Mrs. Westfall, and Miss Changet, along with occasionally Mr. Herzog. And then there’s the whole team of therapists: Mrs. Meyers, Mrs. McClain, Mrs. Hutcheson, and Mr. Dorian. These fabulous people have enriched Sophie’s life and the life of our family by extension. They are skilled and caring.

And what I love the most about all these people is that they’ve never looked at Sophie through the lens of a label. In the few short weeks that we’ve had our label, I’ve already realized the difficulty this brings. Sophie’s new team at her new elementary school sees autism on her reports and immediately expects certain things and sees her in a certain light. While the educator in me understands this to a degree, the parent in me just screams that they would look past that label and see my child. Sophie’s diagnosis was not an obvious one for anyone. No one really saw it except me. Autism can look really different in girls, especially when they are talkative like Sophie. No one on her team even considered it for her, even when I asked about it last fall, because she just doesn’t fit the typical mold. But after evaluation upon evaluation, the results are clear, and so we have the label. My prayer is that as Sophie’s new team begins to work with her, they will be able to look past the label and not just expect Sophie to be a certain way because of her label. I pray that she will receive both the support and the challenge that she needs to continue growing and achieving.

Many people have asked me what’s next for Sophie. The short answer is: KINDERGARTEN! Sophie is SO EXCITED for kindergarten. We toured her new school just before school concluded in May. She bounced around from room to room with the assistant principal and me, looking at the art room, the music room, the kindergarten rooms, the lunch room, and several therapy rooms. She was full of questions and excitement! She will be going to her home elementary school, which is just a block and a half from our home.

On the medical front, Sophie has just seen her developmental pediatrician. Given everything that the school did to evaluate her, he was comfortable offering us the medical diagnosis of Autism. He was also quick to point out that her diagnosis was not an obvious one, but that it is good she has this in place entering kindergarten, because it will open more doors for support for Sophie. It also finally gives us an answer for what has been causing every single one of the problems she’s had, from anxiety and sensory issues, to her muscle tone and speech delay.

In this moment, as I edit this text I wrote two weeks ago, I’m honestly pretty angry about life. I know in my head that I’m crazy blessed in so many ways. There are many folks out there who have it way worse. But I just need to say that I’m not happy my child is diagnosed with autism. I’m not happy that I lost a good friend and key support person in my life immediately after saying “yes” to God’s call into ministry. (If you’re not a consistent reader of the blog, my neighbor and friend passed away in April, my kids’ “granny.”) I’m pretty angry about all of that. Life since March has basically been overwhelming. And when I wrote this two weeks ago, I was in a little bit better place than I am now. So, I’m reading these last few paragraphs I wrote below and trying to take them to heart today, in the middle of the anger, the grief, the sadness. I think it’s ok to be angry that this world is broken. I think it’s ok to be mad that death happens. To rage, “this isn’t how it’s supposed to be.” Because, in all honesty, this ISN’T the way it was supposed to be. Our world is marred with brokenness. And the pain that I’m feeling was never a part of God’s plan. But he is there in the pain. And he can handle the anger. It’s not a place to remain, but sometimes it is a season in the journey. And I know that a little rage won’t scare him off. Just like when my kids rage at me about something that’s rocked their little worlds. I can handle it. I’m big enough. But right now, I’m the kid, and my world is rocked, but I know my Father can handle it.

So… I’m coming back to where I was two weeks ago… and I’m going to try to listen to myself. I’m honestly not there today, but I’m trying to turn that arrow….

My word for the year has been “Do what’s in front of you” with the image of an arrow directing my path. So in spite of all the upheaval in my personal life, I’m trying to keep myself pointed in the right direction, and I’m going to keep doing what’s in front of me.

Life has been hard this spring, and often overwhelming. But when I feel overwhelmed by any one of many emotions in many difficult situations, I have to remind myself that I can make it through today, I can be ok with today. And that’s got to be enough. God’s grace for tomorrow will meet me in tomorrow.

“Let your eyes look straight ahead; fix your gaze directly before you. Give careful thought to the paths for your feet and be steadfast in all your ways. Do not turn to the right or to the left; keep your foot from evil.” Proverbs 4:25-27

1 Comment

Filed under Sophie's Story

Sophie’s Story: A Winter Hat on a Warm Spring Day

Have you ever had one of those moments where you are saying something to your child and you immediately hear the voice of God speaking it back to you? I had one of those moments this morning. We were running late getting ready for school, surprise, surprise. I hadn’t slept much the night before. The baby was cranky, being the reason that I was up, she was also sleep deprived. I was trying to do too many things in too little time. As I hurried to get ready to avoid driving Sophie to school in my bathrobe, I shouted instructions to the big kids, hoping against hope they could get themselves together better than usual when left to their own means. I asked Sophie to get her pink blanket for rest time at preschool, to get her socks on, and to get her shoes on. Three simple requests.

She came back to my room a few minutes later where I was trying to dress myself while keeping the baby out of my trashcan, and she proclaimed with glee, “Look, I got my hat!” She’s wearing her winter hat. Sockless. Shoeless. Blanketless. But she’s got her hat. And she was so happy about it. In my overwhelmed moment of frustration I told her she didn’t need a hat today because it’s 50 degrees outside. (Can I get an amen for that?!) I reminded her about her socks and shoes and blanket. But instead of getting on the ball, she came back to that hat and argued with me that she did indeed need her hat today, that she planned to wear it outside to school. I should have just dropped it. She’s six. Her logical function is, well, six. Sure, wear your hat. It’s a hat, who cares! But I was a little annoyed with her attitude to argue with me, and so I chose the wrong battle. But in that battle, what I said to her really resonated with my own journey lately.

“You have spent all this time worrying about a hat that you don’t even need when you have not even done the things I’ve asked you to do. What I’m asking you to do will prepare you for school, where you need to be today.”

That hit me between the eyes, man. I have spent so much time worrying about things I don’t even need instead of just doing what God has asked me to do. When I spoke those words, I heard “house” rather than “hat” in my head. You have spent so much time worrying about a house you don’t even need instead of doing the things I’ve asked you to do. I’m going to chew on that one today. Mine’s a house. What hat are you worrying about?

2 Comments

Filed under Sophie's Story

Sophie’s Story: Mommy’s Silence

My faithful Sophie’s Story Readers,

I’m so sorry for the long silence! I’m sure you have wondered where I have been these past six months with Sophie’s Story. My silence has, in large part, been due to the birth of my daughter Hannah. New babies do require a great deal of time! And they are really good at not letting mommies sleep very much. So what used to be mommy’s free time turns into mommy’s nap time.

But in addition, I felt an undeniable check in my spirit last fall when I was sharing about Sophie’s upcoming appointments with the developmental pediatrician. A dear friend of mine once wisely shared with me how she had at times over-explained, and over-shared her own life, in an attempt to justify herself, so that she would not be judged, to the point that she felt stripped down, bared to the world, with nothing left of herself that was private. She reminded me that I don’t owe anyone any explanations for my decisions as a parent. I valued these words, probably more than she knew. I felt I needed to take some time to ponder and treasure Sophie’s moments in my heart and to really search out my motives in sharing Sophie’s Story, because perhaps they had strayed from where they began.

Sophie’s Story began as a way for me to share the beautiful things that my Father was doing in my life and in Sophie’s through her journey, full of challenges and triumphs. But in doing that, I wanted to consider carefully if I was now over-sharing Sophie to the point that she would someday feel stripped bare for the world to see. She is young yet, and she cannot read, but someday she will be able to read, and she will probably read what I have written about her life (hopefully it will be a book!). I would never want Sophie to feel like we were only focused on what could possibly be “wrong” with her. There is so much right about her life!

As I shared Sophie’s Story with a new friend over coffee recently, tears filling my eyes, I remembered the heart of why her story began. It began because I wanted the world to see that even in the very hard things in life, which Sophie will someday have to embrace about herself, Jesus is there to be trusted. Through every doctors appointment, though every goose chase of a medical test, through all the heart-wrenching moments and the ones where my heart just soared, Jesus has been there.

As I tried to explain to my friend in a nutshell about Sophie’s Story, I was reminded of the words my brother shared with me quite a few years ago now. When we first began a search for any over-arching diagnosis that would explain Sophie’s muscle tone, and we kept coming up empty handed, he said, “Maybe it’s because God already healed her.” When Sophie was four months old and was diagnosed with low muscle tone, we brought her to church and our church prayed over her. Many have continued to pray over the years.  And I truly believe that in those moments, everything changed. Yes, Sophie has still suffered delays because of her muscle tone, and that may forever impact her body. But we’ve never found a cause — from brain tumors to genetic conditions to syndromes, nothing has ever been found. It was important to search these things out because they could be indicators for more serious problems that she might have had that were invisible to the eye, but God, in his mercy, has blessed Sophie with health and wholeness in every area we’ve searched. And so we’re pretty much done searching.

Sophie has her issues, yes, but so does every child. I’m tired of scrutinizing every little flag that pops up because maybe it will point us to a new idea. Done. I’m tired of chasing down theories. Done. I’m tired of over-analyzing her behaviors. Done. Sophie is doing really well in all areas, and we are rejoicing that she is where she is on the cusp of her sixth birthday. When her low muscle tone was discovered at four months old, we really didn’t know what six years old would look like, but here we are, in perfect health. Thank you, Jesus.

There’s a lot of freedom for me in this decision to cease searching and analyzing, and just enjoy parenting. Sophie feels less like a puzzle to solve and more like a kid to enjoy. I’m letting go of the search, and I’m just going to sit back and enjoy the ride. I’m going to treasure her kid years in my heart, soaking in the days of make-believe with the doll house, the puppies in my pocket, the barbies, the Paw Patrols, the baby dolls. She’s a great kid, and I’m forever thankful for her journey and all its challenges because it has taken my faith to new depths and strengthened my walk with Jesus. But I’m done looking for what’s wrong, and I’m just going to soak up all that is so very right about Sophie.

3 Comments

Filed under Sophie's Story

Sophie Sees

In my last post I came to you with much enthusiasm over Sophie’s growth in handwriting. She’s doing so well with her letters! It’s thrilling. This week I can’t say I have a heap of enthusiasm, but I do have a heap of cuteness.

Sophie got glasses.

 

 

 

 

 

 

 

 

We knew that this was likely for Sophie from the time she was about 9 months old, when she was diagnosed with nystagmus. This is an involuntary darting or shaking of the eyes. And it is caused by, you guessed it, improper muscle coordination from the brain. It’s the million dollar answer for the myriad of Sophie’s issues. Of course her brain has adapted to the way her eyes move, so she doesn’t see things constantly shaking, but nystagmus does impact her vision somewhat.

For one thing, her ophthalmologist tells us that she will never have great depth perception. (Perhaps an explanation for her abundance of graceful movement lol — she falls all. the. time.) And now her eyes are not really working that well in unison because one eye is nearsighted, and one eye is farsighted. So one of her eyes can probably see better than the other, and the brain will learn to depend too much on the good eye, allowing the bad eye to lag even more. So, to try and get her eyes working together as much as possible, she has to wear the cutest glasses ever.

Sophie is super awesome at losing things, so I’m expecting that the search for the glasses will be everlasting and epic. Fortunately, she’s not terribly destructive of her possessions, though her abounding grace aforementioned does sometimes result in the destruction of her property. So having glasses is bound to be lots of fun. But at least she’s cute, and she can see.

So far she does not really enjoy wearing the glasses, but she does ok if she forgets that they are on her face. I know in time she will get used to wearing them.

1 Comment

Filed under Sophie's Story

Sophie Writes

One of the deciding factors for us in keeping Sophie in preschool for another year was her fine motor skills, specifically her handwriting. Her educators were faithful to reassure me that handwriting emerges at all different ages, like many other skills. But it was definitely a skill I felt she should have some emergence of before entering Kindergarten. And she did not. Until this summer, she really couldn’t even draw a circle. She was mainly still just scribbling. This is a delay that we expected for Sophie because of her low muscle tone. Her hands have been an area of low tone and delayed development in other skills as well. In addition, writing requires heaps of motor planning, which is also difficult for Sophie. Handwriting was included in Sophie’s IEP goals last year, and she worked all year on writing, but the scribbles continued! I was discouraged by her limited progress with this goal.

As with all things, Sophie has once again shown that she is on her own timetable and will do things when she is interested and ready. Once school started this fall, she became very interested in writing, but she was still not able to do it. The magna doodle became her best friend. She scribbled and scribbled trying to figure out how to form letters with that pen.

We even have a mini magna doodle for travel! Practicing with Daddy here.

As her OT rolled out at school, her therapist suggested that we use some other modes for learning the motor planning piece of writing, such as using a tray of rice for her to form very large letters in with her fingers so that her brain could learn the movements. We jumped right on that and made a huge mess in my dining room. And she also did similar activities in her classroom and during therapy.

Practicing letters in sand at school.

So school has been in session now for about six weeks. And this week Sophie surprised my socks off one afternoon. We’re all playing on the floor, and I hear her talking to herself (she does this frequently and her conversations with herself are a stitch!) while she’s playing on her magna doodle. She’s saying this is a “P” and this is a “D.” I look over and, low and behold, there are real letters on her magna doodle!

I praised her excellent work, and she invited me to come and write with her. She wanted to show me all her skills. Just like that, in a day, she can write many letters — D, P, b, H, h, I, i, O, M, E, e, etc — when six weeks ago she could only draw a circle! The switch flipped! Amazing! I’m so proud of her! She can write all of the letters in her name except for the S. S is tricky! So I help her with the S, and she’s practicing by tracing the one we do together over and over again. But the rest she can do all on her own.

SO proud of her work!

She’s also drawing faces now, which is great. The faces crack me up!

And there’s one picture she does often that Micah calls “the bathtub with legs on it.” I’m not sure yet what it is. Maybe a bathtub with legs on it.

I’m thrilled to see Sophie making such great progress already in school this year. This totally reaffirms my decision to keep her in preschool for another year of growth and development. And seeing her achieve such a huge milestone so early in the school year does also take some of the sadness that I had felt out of that choice.

I’m so proud of Sophie. Things have never come easily for her, but she never gives up. It’s so interesting that so many things do come so easily to her brother, and he is so much quicker to give up. He sat down and was writing most of his name the first time he tried at just 3 years old. Kind of made me mad how easy it was for him! All the while watching Sophie struggle!

But she has learned perseverance through her difficulties.

Isn’t that straight out of James 1? “Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance, and perseverance must finish its work so that you can be mature and complete, not lacking anything.” I guess I can see what James means now. It is the trials, it is the difficulties, that teach us how to persevere, how to press on anyways. And we need that skill. We need to be able to get back up again and again when we’ve fallen or been knocked down, when something is so difficult we don’t think we’ll ever be able to do it. Once again my Sophie girl is teaching her mamma the lessons. I’m so thankful to be a part of her story.

1 Comment

Filed under Sophie's Story

Sophie’s Story: On a Positive Note, the Preschool IEP Meeting

Some parents, it seems, through my contacts with other special needs moms and dads, HATE their kids’ IEP meetings. I’ve heard stories of tears. I’ve heard stories of having to hire lawyers and advocates to take to the school and even having their kids’ pediatricians attend meetings so that they can get the needed services from their schools. NOT SO with Lancaster City Preschool! They rock the IEP meeting!

Sophie’s first day of preschool in 2015. She was 3 & 1/2 and nonverbal. WOW.

I’ve been meeting with roughly the same “team” for over three years now as Sophie has slowly waded her way through preschool (which is typically just one or two years for most kiddos). I used to dread them because I was so afraid to spend all that time focusing on her deficits. BUT, the “team” is always so phenomenal about highlighting her strengths. And… they genuinely LOVE Sophie. We do ponder her difficulties and try to problem solve together what she needs. But we also laugh over stories of her antics. The bottom line is, they know how to do their jobs well, and they love serving my girl. Who could ask for more? I certainly couldn’t. But more was what I got when I went in for her annual IEP review this fall….

Each of her therapists and teachers shared their perceptions of Sophie’s progress (ALL AMAZED by how far she’s grown — her adaptive PE teacher actually dropped his jaw in shock and awe when he met with her this fall to assess her progress!). And then each specialist highlighted what new goals they have for Sophie for this year since she met almost ALL of her goals from last year. We’re working on fine motor skills like handwriting, cutting and such. We’re working on balance and leg strength. We’re working on some speech blends and on conversing with peers. We’re working on social skills. All this I expected.

One of my favorite pictures of Sophie stylin’ during her first year of preschool, shortly after school started.

The “MORE” part that amazed me was when it came time for her speech teacher to share. She was the last to go. (If you’re new to Sophie’s story, her lack of speech two years ago was the HUGE reason we initially sent her to preschool for services. She had about five words when she started preschool three years ago at 3 and a half years old.) So, Miss Renee said that all of Sophie’s current speech articulation deficits are completely AGE APPROPRIATE, and she could probably TEST OUT of speech this year!! Talk about a jaw dropper! I was amazed and thrilled to hear this! In two years, Sophie has completely caught up in articulation. Praise God! This was SO encouraging to me!

We are, however, going to continue speech this year to work on the social piece of the puzzle. Sophie’s introverted, which is fine, and struggles with anxiety, so relating to peers isn’t always easy and isn’t always her preference. Other times, though, she performs with perfectly appropriate social skills. It’s kind of baffling. So we’re still working on that. I’m thrilled to report that she has also made a new friend in this first month of preschool. Her BFF of the last two years went off to kindergarten this year, and we noticed a gaping hole in her absence. We do miss our Evie so much!! Sophie’s new friend, who is also named Sophie, is very sweet and such a good helper to Sophie! After school they often have to hug each other goodbye. Aww!

My poor baby is falling asleep AT SCHOOL in the middle of all the chaos. Jesus give us sleep, please!

So we are off to a great start at preschool this year! Now if only we could get her sleep adjusted, we’d be all set! We are so thankful for her preschool, for her “team,” for all those who have helped her in her journey. We are truly blessed by all the support we’ve received. I’m reminded again that unless we experience difficulty in life, we often miss blessings. There are so many opportunities for blessing in the difficulties that we go through. Sophie’s “team,” as well as all of you who love and support her through my blog, are the blessing we would never have experienced without Sophie’s struggles. I find that our God is more than able to “work all things for the good of those who love him, who have been called according to his purpose.” It was so good to see through the eyes of others how far Sophie has come in the past two years. Sometimes I lose sight of this because I’m with her every day, and I’m in the trenches with her in her current struggles. Two years ago we weren’t even sure if Sophie would be able to speak. And now here we are, crushing goals left and right. When we are in the difficult and impossible, that is when we truly see how much God is able to do. I’m tucking that little gem away in my mind as we’re in the trenches of our current difficult things. God is able to bring us through all of this, just like he did with speech. Two years from now, everything may look very different. And if I know anything about my loving Father, I know there will be continued blessings along the way.

Leave a Comment

Filed under Sophie's Story