Ready

heavenly skyMy children are the worst at getting ready. Be it outside, or to church, or to school, or to the car for an errand, they are not interested in getting ready. Sophie is sometimes so eager just to be where we’re going that she has a meltdown when we tell her to get ready. And let’s be clear — getting ready is just putting shoes on, most of the time — nothing to melt down over. But she’s so eager to be “there” that anything which stands between her and there is just overwhelming. “You mean I have to find my shoes?! Uhhhh! How can I ever do that?!!” Like it’s so hard it’s impossible. But unless we’re ready, we can’t go to our destination.

This summer we made a ritual of going for a morning walk. Something about the fresh air and change of scenery revived us all from our morning grumpies. So we would get our shoes on and get ready to go get in the stroller. Inevitably, I would forget something — keys, water, phone, shades, trip to the potty, something — after the children were “ready.” So I’d tell them just to hang on for just a second while I did whatever it was, and that I’d be right back to get them for our walk. Micah would remain, shoes on, standing at the door, awaiting my return. But Sophie. Oh Sophie. This week, I came back from a trip to the potty before our walk and found that she had discarded her shoes and jacket and was laying, face down on the floor, crying … wait for it … because she wanted to go for a walk. I literally had just told her, “Wait while mommy goes potty and then when I come back down we will go for our walk.” Why was it so hard for her to wait for 90 seconds? Why did she get un-ready while she waited?

I can only guess what might have been going through Sophie’s mind in those moments when I was upstairs. But in her, I saw a version of myself. I’m waiting, too, and I’ve been promised, “I’ll be right back for you.” I, too, have a destination awaiting me. But I’m so quick to be “un-ready” just like Sophie. I don’t live my life in the expectancy that Jesus is returning for me or may call me home at any time or wants to do a new work in my life. I’m settled here like this is my permanent crappy spot to be. I’ve taken up residence with my face in the rug, crying about my not being at my desired destination. Oh, the trials of this world. Yes, they stink. If you know anything about my story, you know that I’ve seen trials. Right now, I’m on day 22 of dizziness. Some days are ok, and some days, like today, are just bad. There have been trials in my childhood, my adolescence, and my adult life. There are always trials in life, and they are trying, and they are hard. But, I can’t let those trials I experience while I’m waiting take my eyes off of what’s coming — like new callings in Christ, growth as a person, or even my ultimate heavenly destination. Because if I can keep my eyes fixed on those goals, then everything here is so much more bearable.

I have to imagine that if Sophie really believed her walk was coming, she would have stayed ready. But she didn’t. She knew that I had gone upstairs, and she assumed, even though I told her otherwise, that the walk was not going to happen right now. She didn’t want to wait, not even for 90 seconds. But sometimes we have to wait. And we have to stay ready. We’ve been promised a heavenly destination. We’re waiting right now. And we need to use this time as best we can to serve Jesus.

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The Lie of Failure

Since dealing with intense dizziness for 15 days now, I have also dealt quite a bit with the lie of failure. There are so many ways that I have fallen short since falling ill. My heart breaks when I can’t ride the swings or the sea-saw with my three year old who doesn’t understand why mommy can’t play. Worse still is when I yell at my children, because my voice is the only recourse I have to protect them. This all came into crystal clarity this morning as Micah ran away from me on the way to the car to take Sophie to school. He bolted directly for the street, of course. I had no choice but to give chance because I could hear a car coming. I ran, the car slowed, and fortunately, Micah stopped at the edge of the sidewalk, just long enough for me to cover the distance and catch him. He laughed the whole way, infuriatingly, and the driver of the car was, fortunately, paying attention and gracious. Frustrated tears filled my eyes as I once again felt the intense weight of failure as a mom.

Right now, my identity is pretty much wrapped up in being a mom to my two kids, so if I fail as a mom, I fail altogether. It’s complete failure for me as a person. We all fail in various areas of our lives, and depending on how much we identify as that role, we will take the failure very hard and very personally. As mommies, we tend to be pretty hard on ourselves — feeling guilty for taking an hour to ourselves, leaving our kiddos in the care of another, or for doing housework while our kids play in the other room, or for finally losing our minds completely and yelling at our kids. We feel like we’re failing them, falling short of being who we think we need to be for them to be raised to be ideal adults, healthy and not dysfunctional. The expectations are high.

But today, God reminded me of something that he spoke to Matt Chandler in the Bible study we’re doing with our small group: “Aren’t you giving yourself a little bit too much credit?” How freeing were those words! How quickly we forget that God is truly in control. To realize that even if I fall short, even if Micah gets away from me and runs toward the street, God is not out of control. He can alert the driver to slow; he can stop my son, even if I am physically unable to move fast enough. More so, He can mold my kids’ hearts to be healthy and functional even if I’m too ill to ride the swings or I lose my temper and yell when I shouldn’t because I don’t feel good.

You see, I’m realizing that failure is a lie. Sin is a reality.  But failure, that label, is a lie. We all fall into sin every single day, but that does not exclude us from being a success in God’s eyes if our hearts are turned towards him and we are moving his direction. Yes, how my kids turn out can be a reflection of how I did as a parent. But it can also be the result of their own choices. I’m not letting myself off the hook entirely; I know I’ve got to find a way to cope with our new reality, to still give my kids all the love and nurturing that they need physically, spiritually, and emotionally. But it was so good to have a reminder today that we have a God of peace who is always in control even when our lives feel like they are spinning out of control. When we can barely steer our own emotional cart, let alone direct the development of two small children, he’s there. He’s in control. Do yourself a favor, and don’t give yourself too much credit today. Trust that God is directing the bigger picture, no matter how messy your corner of the painting looks right now.

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Stroke Update

It has been five days since my MRI, and just three days since I learned that I’m a stroke victim. The more time passes, the more questions arise. I saw my OB on Friday to discuss the events of my past pregnancies and birth control pills. She stated that the pill I was on was one that was often given to those prone for stroke because it contains no estrogen. (Sorry if this is TMI, but I don’t know how else to explain without, well, explaining.) So, she felt that the pill likely had no contribution to my stroke. As I explained the end of my pregnancy with Sophie, for she was not my doctor at that point in time, she still felt that my blood pressure being only slightly outside the normal range and the fact that I passed tests for pre-eclampsia would make it unlikely that I stroked at that time. However, unless I had a blood pressure spike that I’m unaware of and never felt, or I have a clotting disorder that I’m unaware of, then that’s the only time I know for sure that my blood pressure was elevated. (For me, it was VERY high at that point, even though it was just outside the range considered “normal.”) In my mind, Sophie’s story just got a whole lot more miraculous. To me, given the info that I have right now, it’s most likely that my stroke occurred during her final weeks in utero. Until I see the neurologist, and even then, we may never know if that’s the case.

What this doesn’t explain is why my dizziness showed up to stay on Sept 7, 2015 and has not improved since that point. This doesn’t explain why I’ve had three episodes of sheer vertigo in the past two years. Perhaps seeing the neurologist will shed some light on why, three and a half years later, my coordination is deteriorating. The appointment with neurology is, unfortunately, still pending. The doctors’ office is having a hard time finding a place that can accept me before November. You would think at 32 I’d make an interesting case study. But I guess they’re just busy people.

If I am on your prayer list, please lift up these requests:

*that my appointment date with neurology would be as soon as possible with the neurologist that God selects
*that I would continue to adjust to the constant dizziness and maintain care of my children and home in a safe manner
*that my symptoms would diminish and that I would be strengthened and healed
*that I would not miss any opportunities that God has for me to testify for his goodness in the midst of this

I am confident that God is using my life for his glory, and so I’m content with that. I’m not walking around expecting to stroke out at any moment. I recognize God’s protection on me, and on my daughter, is even greater than I ever realized. His truth remains constant even when my feelings wobble. Thanks for upholding us in your prayers!

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Afterward

I’m 32 years old, and I’ve just been told that I recently suffered a stroke. Your shock is my shock. This was the last thing I expected to be told about the results of my MRI. Now, in hindsight, I see that it does explain my symptoms. But nobody would have suggested that before my brain scan. It wasn’t even on our radar. After the shock has worn off, I’m just a little overwhelmed. I love my family more than my next breath, and I hate the thought that my heath would threaten to take me away from them. In these moments as I consider what really matters, I know that God is able to do what my heart most desires: He is able to turn my children’s hearts towards him that they might know him and love him all the days of their lives. In short, nothing else matters. Whether I am here or not, I know that God is able to do that. I cannot even begin to crack open the door on the grief-filled thought that my children would grow up without a mother, my husband without a wife. It’s more than I can contemplate. But I can trust Jesus.

Right now I have more questions about this than answers. I don’t know for sure what caused the stroke (high blood pressure during my first pregnancy, blood clots after either birth, birth control pills, high cholesterol, heart arrhythmia, to name a few frightening possibilities), or when it happened. I don’t know if I’m likely to have another one. I don’t know if my lack of balance and coordination, my dizziness, are here to stay or if they will abate, why they waited this long to show up. (I’m told that the imaging showed that my stroke was older, within the past several years, not the past several weeks when my symptoms spiked.) I do know that I will see a neurologist, soon, we hope, and get some more clarity and answers. And I do know that my Father was not far off whenever this occurred. He was there in that moment, and he is here with me in this one.

And I’m also incredibly thankful. This event was obviously so minor that I didn’t even realize what was happening. I have no permanent paralysis. I’m alive. I can hear (mostly). I can see. I can speak. I can care for my children, my husband. I’m thankful. I’m adjusting to the care that I need to take when I’m moving — carry less, make more trips; step carefully; keep my eyes on what I’m doing. I’ll spill more, but if you know me, you know that’s always been an issue. Andrew has a term for this. He says I’ve “pulled a Catherine” when anyone drops anything. I’ll be pulling more “Catherines” to be sure. But that’s ok. Because I’m still here.

And I still know that my God is faithful. I still know that I always have hope in him. He has chosen this race marked out for me, every step, every day, including the finish line. And I believe in his goodness. In processing this stroke, this future, with my husband, I told him that God doesn’t promise us a life without pain. But he does offer us hope and promises to walk with us through it all. I know that he will be with my family each step of the way. I trust that his plan is bigger and better than mine.

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What Tomorrow Holds

PITC_Calendar_Sep14_ButtonFor me, tomorrow holds an MRI, or at least that’s what’s on the calendar as of today. (I guess it could always change…) Because of ongoing struggles with vertigo and dizziness, my doctor has ordered a brain scan. Talk about a case of the Mondays! To be honest, it’s not something that I’ve given a lot of thought to. I’ve just kept pushing forward. I don’t have a choice to stop and sit down and pout, because there are a lot of people depending on me. I think that’s been good for me. But today I began to feel a growing sense of unease about tomorrow’s scans. I’ve long since committed to memory the verses in Matthew where Jesus instructs us not to worry, but this worry-free life can still be hard to live out.

Once again, I find in my daughter the perfect illustration which speaks to my worry today. Last week, Sophie began attending a new classroom at school. Things took a definite swing to the good with this move. I’ve been very excited about the positive change in her attitude towards school, with one exception. The day that she moved to a new classroom, Sophie went through here first fire drill at school this year. Since then (Thursday)IMG_0964 anytime school comes up in conversation with anyone, Sophie points to her ear, her sign for “loud.” We’ve talked about this on several occasions. In talking with her, I’ve come to learn that it’s the fire alarm that has so traumatized her. She’s afraid of the noise and afraid it will happen again. In short, she’s worrying over the fire alarm any time she thinks about school. (She’s even begun plugging her ears!!) And in her little world, the only thing I’ve seen that worry do is steal from her the full extent of her joy over school. Yes, she still likes school, and she still says that she wants to go back, but it’s always tainted with that worry over the fire alarm.

And so it is with me. If I worry over what the scans tomorrow may hold for me, all I do is lose the full extent of my joy in life. Just like Sophie and school, I will still enjoy my life with my kids and my husband if I fret a little over the coming woes. But, I see in her situation, there’s truly nothing to worry about, and worry about it will change nothing. The fire alarm is just a noise — it can’t do anything to her. This MRI, which I know from Sophie’s MRIs, will be a loud noise… but I don’t want it to steal the joy of life away from me because I’m worrying over a little noise. (Really, in the grown up world, we know that’s not what worries me; it’s more what the little [read:big] noise machine might reveal about my brain that frightens me.)

I don’t want Sophie to worry over another fire alarm at school. I know one may come eventually, but I can see all the fun and learning that she will miss out on if she allows that noise to tie her up in worry. I don’t want that for her life, and I don’t want it for mine. When Sophie and I talked about this, I told her that she needed to commit her worry to Jesus and trust that he was always going to be there for her, even in the scary times. Big words for a three year old, but I figured truth is truth. I try to put it in a way that she can understand. And I want to do the same with my own health. I want to place myself in Jesus’ hands and know that he is big enough to handle it. He’s going to be with me every wobbly step of the way. (Seriously, I feel like I’m living on a ship right now.)

In essence, I have realized through Sophie’s worry, that my own worry will change little, and that there’s really nothing to worry over. If I choose to worry anyways, then I will just allow myself to be distracted and I will not enjoy my life to its fullest. I don’t want to let worry rob me of my day’s joy and of all the good things that God has for me.

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Into Sophie’s World: School

apraxiakids2“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.

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Generosity

coinsWe have been given many opportunities, as a family, to be generous to others — generous with our possessions, our money, our time, ourselves. Sometimes we have missed the opportunity, but we try not to. My parents, particularly my father, instilled in me that generosity is a very good thing. One of his mantras that has stuck with me through the years is “It’s only money.” I can hear him say it so clearly. It’s only money. So often we let our money control us, all the while, thinking that we are the ones controlling our money. If we can’t hold it with open hands, then it’s controlling us. So, a couple of years ago, we purposed ourselves as a family to be generous. I won’t detail the giving, because that’s private, and not important to this lesson. If we heard of a need, we tried to follow the command of Proverbs 3:27 “Do not withhold good from those who deserve it, when it is in your power to act.” It’s not always in our power to do something big, but we always tried to do what we could. Sometimes, we didn’t even know of a need specifically, but we just gave things away anyways. The important thing for me was that we kept our hands open. If I had something that I wasn’t in need of, then I felt I should give it to someone in need. Because, here’s the bottom line, I know that when I do need something, I have a God who will provide it.

I’ll share a brief story: We needed a travel mirror for our vacation last summer when Micah was just four months old. They cost something totally unreasonable in the store, like $30. I didn’t have $30 to buy one, nor the opportunity to go to the store and get one. So I prayed and told God that we would really like to have one before our trip (which was in like, a day, so I gave him a lot of time to come through, you know.) A friend of mine from childhood saw my post on Facebook and contacted me that she was able to loan me hers. I was thrilled. She even went the extra mile to bring it all the way over to my house. When she got here, she told me that I could keep the mirror. I was even more pleased. But the next part of the story was the best! She said that she had been intended to sell it in her garage sale, but felt compelled to give it away to me instead as she prepared to collect it from her garage and bring it to me. On her way to my house, she stopped at the ATM where the elderly woman in front of her accidentally drove away leaving a large amount of cash in the ATM. My friend chased her down and gave her the cash she had forgotten. To say thank you, the woman gave my friend $25, which is what she paid for the mirror and more than what she hoped to sell it for. See because she chose to be obedient to God and to give me that mirror, God was generous towards her as well. When we are generous to others, then we invite God to meet our needs through his own generosity. He can compel any human being at any time to give any thing to any one. So why should we withhold good from those who deserve it when it’s in our power to act?

You are probably aware that recently we have become the ones in need. Sophie’s private speech therapy bills are projected to be astronomical. We don’t know what God is going to do over the next year of her life, so we’re not quaking in our boots thinking about these bills, but we are trying to be wise and have asked for support in our finances. In our fundraising, have seen the truth of Malachi 3:10 where God talks about being faithful in tithing: “‘Test me in this,’ says the Lord Almighty, ‘and see if I will not throw open the floodgates of heaven and pour out so much blessing that you will not have room enough for it.’” We have been so blessed by the financial support that we have received for Speech for Sophie. It is really so humbling to see how loved we are by our family and friends, our church, and our God. I’ve been speechless and moved to tears on several occasions as I have watched God throw open the floodgates of heaven, moving different people to bless us financially. I’m humbled and blessed and amazed. We have had the opportunity to be generous, and we will continue taking those opportunities as much as is in our power to do so. Just a few weeks ago we had a chance to give to a special event, a free concert sharing the gospel with a nearby town. I felt urged to give, but my gift was little. I chose to obey, remembering the words of Proverbs and the story of the widow who gave her two coins – a fraction of a penny (Mark 12). Jesus says that she put more into the treasury than all the others because she gave out of her poverty, all that she had. I won’t boast that I gave all I had. I could have done better, and in hindsight, I wish that I had. But I will boast in God’s generosity. The very next day after we gave that small offering, we were given a gift … ready for this?? … 100 TIMES larger than what we put in. Literally, 100 times larger. All I could do was cry. How can God be this good to me? How can he love me and my girl THIS much? But this pales, doesn’t it? in comparison to what else he’s done for us.

I don’t share any of this to be boastful, to toot my own horn, or to guilt anyone to giving a financial gift to Sophie. (Certainly not!) But I am learning an important lesson about the way we view our stuff, our time, our money, our interests and abilities. I’m learning about stewardship. I’m learning that God has given me what I have so that I can use it to bless others. There are SO many ways to give! And when I choose to do that, it is SO GOOD. And I want others to know this goodness. I want others to be able to loosen their hold on their “stuff”  so that they can enjoy God’s generosity. Because it’s way better than yours and mine. In your hour of need, God will open the floodgates to bless you with more than you could ever imagine.

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Into Sophie’s World: Mommy’s Heart

Seeing Trouble Differently apraxiakids2

I came across some words of Jesus that had never before caught my attention. In John 12, as Jesus is predicting his death to his closest followers, he rightly shows how we should view trouble: “Now, my heart is troubled,” he says, “and what shall I say? ‘Father, save me from this hour’? No, it was for this very reason I cam to this hour. Father, glorify your name!” (27-28) Powerful words!

Jesus knew what it felt like to have a troubled heart. How many times has my heart felt this way? Before each of Sophie’s appointments and tests and diagnoses, or lack thereof. Through countless days of worry over her prognosis. After the hair-pulling has resumed and speech continues to be absent. My heart has felt troubled. How many times have I prayed “save me from this hour”? So many times. I’ve prayed that God would take away our difficulty, that he would enable Sophie to speak in a miraculous fashion. And he has chosen not to. Time (and much work of the Holy Spirit) has allowed me to see our situation differently. Rather than asking to be saved from our troubles, I can see that my prayer should be like Jesus’ prayer: Father, glorify your name. I can see that it is for this very reason that he brought us to this “hour,” to this place in life. There is much glory for the Father in the midst of this trouble.

What trouble are you facing? Are you asking the Father to save you from it? Or are you asking him to glorify himself through it? Either way, you will walk through the trial. But your viewpoint will be entirely different based upon which stance you choose. Pain must be walked through. It must be endured. There’s no way to get around it. But, like Jesus, we can see that God brought us to this place for a specific reason, and through it, we can bring glory to his name, if we choose to do so.

It is my utmost hope that Sophie’s story brings glory to the Father’s name. I want nothing more than for his name to be lifted high. Yes, there is always, always going to be a part of me that longs for “normal” for her. The night before his death, Jesus asked the Father again “Take this cup from me. Yet not what I will, but what you will” (Mark 14:36), so I believe it’s ok for me to continue asking for this cup to be taken. Yet, I temper that with a submission to his will above my own, in the knowledge that he is working for my good and for Sophie’s, and his plan is truly the best plan.

I hope in days ahead that even when my heart feels troubled, I can still resolve to pray first “Father, glorify your name” rather than “save me from this hour.” Maybe trouble comes not always from our own consequences or from the enemy. (Or even if it does, our opportunity is the same.) Maybe we should view our troubles differently. Maybe sometimes challenges come from God so that we are in a place to display his glory. But we can’t do that by running away or skirting the trial. We’ve got to go in head on, eyes on the horizon, looking for the Father to glorify himself, asking for him to glorify himself instead of always asking to be spared the pain, the struggle, the difficulty. Jesus’ hour, his own death, was not an easy one to accept. But he resolved that the Father was doing something good and glorious through it, and so he trusted the Father over his own feelings. I will resolve the same. Though our hour is not easy, I trust that my Father is doing good work.

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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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