Monthly Archives: August 2015

Into Sophie’s World: Engaging

apraxiakids2In 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.

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Into Sophie’s World: Marginalized

apraxiakids2Interacting 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.

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Into Sophie’s World: Imagine the Frustration

apraxiakids2On 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.

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Into Sophie’s World: What is Apraxia?

apraxiakids2Prompted by several other pieces that I’ve seen floating around facebook in the last month, I thought that some informative posts about how to enter Sophie’s world might be helpful to those who know and love her. This is the first of those posts.

Many people are probably unclear on exactly what Sophie’s diagnosis means. She’s not mentally retarded; she’s not autistic; nor does she simply have a speech delay. Sophie has a speech disability known as apraxia.

Apraxia is a motor planning disorder. That means, Sophie’s brain cannot plan the necessary movements for speech. Her brain can’t tell her lips and her tongue how to move to make words come out. For some children, this is a sequencing problem. They can say “Ma” or “Bu” but saying “mama” or “butter” would be a challenge because of the combination of syllables. We’re not even to that point yet. Right now, Sophie’s mind has difficulty combining “mm” with “aa” to form “ma.”

However, this does not mean that Sophie doesn’t understand your words. She doesn’t need you to speak loudly or slowly. If you’ve interacted with her at all, you know that she is sharp as a tack. It’s important for people to understand that Sophie’s receptive language — what she understands — while perhaps minimally delayed, is not grossly delayed as her speech is. Her disability lies only in the lack of mental control over her mouth and tongue. The neurological channels that should be open and firing for her brain to move her mouth are, for whatever reason, not open and firing.

The remedy for apraxia is intensive speech therapy where, little by little, we teach her brain how to control her mouth and tongue. Of course, Sophie’s motor planning issue is compounded by the fact that she also has hypotonia, or low muscle tone. This is why Sophie often moves around with her mouth open and has sometimes even has trouble forming a smile. Her facial muscles are just slightly slacker than yours and mine. We definitely underestimate the amount of muscular strength and control required for speech, even for a closed mouth. It is very likely that Sophie will someday be able to speak normally. This is great news. The road to resolving apraxia can be a very long one. For some children it resolves after a few years of therapy and doesn’t create any lasting issues. For other children, the struggle will continue into their teen years, as if those years weren’t hard enough without a speech disorder.

Right now, Sophie’s road appears to be a long one. But, we are just starting out, so you never know how different things may look in a year from now. Just to give you an example of where she’s at, right now we are stoked because she is able to produce three consonant sounds intentionally and two vowel sounds intentionally. She is beginning to learn to blend those sounds together. There are so. many. sounds. to learn. It’s a long, slow process. But, we are in process and seeing actual progress for the first time ever, so we are excited. Currently, Sophie can say “up” and “bye bye.” Sweet, sweet speech.

At the heart level, I choose to take it one day at a time. I am ok with today. I am trusting God for tomorrow, and for those teen years down the road.

I hope this gives you a better understanding of what apraxia is and how we treat it. I’ll be writing more about the social aspects of dealing with apraxia in future posts.

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Leftovers

leftoversI don’t think I know anyone who really gets excited about leftovers. When I was a kid, we always had the leftovers buffet for Sunday lunch. My mom didn’t have to work to prepare a nice meal, and we weren’t wasteful because we set aside an opportunity to use the leftovers. My mom always ate what needed to be eaten up. Maybe it was the oldest, or maybe there was just a little dab left. She didn’t want to let those remnants go to waste. Now that I’m the mom of the house, I find myself eating up all the little bits of this and that which are left over, creating some very interesting meal combinations. But, I don’t want to be wasteful, so I do it.

John 6 records a story of “leftovers.” Here Jesus miraculously feeds over 5,000 people from five small loaves of bread and two fish. It didn’t look like much, but Jesus thanked his Father for it, and began to work a miracle. What if we could just give thanks for the small portion we have been given — whatever it is — and trust God to do a miracle with it?

The story tells us that everyone ate “as much as he wanted.” That’s just awesome. Guys, Jesus has enough. Whatever we stand in need of, he’s got enough. No matter how few fish we have in our basket to offer him, he’s got the power and the compassion to use it. It will be enough.  Some days I feel horribly inadequate. But if I take the small amount of ability that I have and give it to Jesus, he will do more with it than I could imagine. Jesus isn’t going to run short on whatever I may need. From our talents and abilities, to our weaknesses, to our physical abilities or inabilities, to our resources or lack thereof — Jesus can use it if we give it to him. And miraculously, I believe, we will find, it is enough. Because he is enough.

As a matter of fact, there wasn’t just enough that day, there was more than enough. There was so much food that day that Jesus gave his disciples these instructions: “Gather the pieces that are leftover. Let nothing be wasted.”

Let nothing be wasted. I love those words. Especially as I ponder God’s choice of apraxia for my daughter, for our family, those words bring me such peace.

Jesus wastes nothing.

There is no part of my difficult journey, of Sophie’s difficult journey, that Jesus will not use to make me a better version of myself and to bring more glory to his name. Jesus wastes nothing. What he has chosen for her life, he will never waste on her behalf. I’m looking for basketfulls of his amazing glory in her life story.

There’s also another way to look at this story of leftovers. Perhaps trodden upon, mashed, mangled from life’s hardships, sometimes we ourselves don’t feel like much but a leftover. But Jesus says, “let nothing be wasted.” My heart hears: “let no one be wasted.” No matter how mangled, torn, or used up we may feel physically, spiritually, or emotionally, in Jesus’ eyes, we are not beyond use. We are worth gathering up. We are still useful, usable, in his eyes.

As a child without words, Sophie is often overlooked by others. Few people, especially peers, truly understand how to interact with her. Yet I know that my Jesus sees her. To Jesus, she is not a leftover, to be passed over because she can’t enter in the same way as others. No one is beyond his use, no matter the disability, the dysfunction, the damage.

Jesus wastes no one.

The leftovers aren’t a chore to Jesus like they sometimes can be to me as I eat a strange concoction of fried cabbage, noodles and olives, and half a sloppy joe. Jesus won’t waste our experiences and he certainly won’t waste us.

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