Monthly Archives: January 2016

From Mourning to Gladness

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As I stood in church one recent Sunday singing a familiar chorus, one line in particular jumped out at me. Tears of gladness filled my eyes as I sang “Mourning turns to songs of praise / Our God saves, our God saves.”  I began to fully realize that I have, largely, exited the chapter of mourning the absence of communication with Sophie. I am overflowing with joy because she is finally using speech to communicate. I waited three and a half years to hear her speak. It was a long wait. So, it’s taken a long time for my heart and mind to finally realize that the wait is over.

It. Is. Over. Sophie can talk!

The words of this song washed joy over my heart, and I turned to a familiar Scripture containing the image of sorrow turned to joy. Phrases from Jeremiah 31 leapt off the page at me, their truth resonating in so many ways with this journey I have been on:

“‘But I will restore you to health and heal your wounds,’ declares the Lord.

‘I will turn their mourning into gladness; I will give them comfort and joy instead of sorrow.’

‘Restrain your voice from weeping and your eyes from tears, for your work will be  rewarded,’ declares the Lord.

‘So there is hope for your future,’ declares the Lord.

‘Just as I watched over them to uproot and tear down, and to overthrow, destroy, and bring disaster, so I will watch over them to build and to plant,’ declares the Lord.”

For so many months and years, I’ve carried a heaviness with me because of Sophie’s reality. Most of this has been tied up in a desire to hear her speak. The older she got, the more evident her speech gap became, and the more my heart bled. It’s been so hard to see my baby struggle. I was so worried (yes, I confess, Lord) that she would never speak, or that it would take years for her to add words to her vocabulary. I read many stories of apraxic children who had taken private speech therapy for years and only gained a few words per year. The journey overwhelmed me. My heart mourned over what seemed lost to us in these silent years. As I sang that chorus on Sunday, my heart fully realized that the silent years are actually over. I can rejoice in what God has done in Sophie’s life. Because her transition to verbal communication has truly been miraculous. Yes, she is probably only 75% intelligible at home and maybe 25% intelligible to the outside world. But she’s only been speaking for five months. And she has literally hundreds of words. Hundreds. She knows every letter in the alphabet, every animal, every household object, every food item, names of significant people, places, and toys, and she can count to twenty. Her vocabulary development in five months is literally inexplicable and indescribable. I knew at her diagnosis that the apraxia journey could take us years for this kind of progress. Let’s just say I had lowered my expectations quite a bit. But why? It is, after all, an awesome God who is guiding her life.

I used to pray that Sophie would just wake up one morning speaking clearly in complete sentences. Well, that didn’t happen. But somewhere along the way in these last four years, God changed me. It wasn’t necessarily my circumstances that changed; but it was my heart. In each of the passages where the Bible gives images of sorrow turned to joy, God never promises that our circumstances will change. He just says that he will give us beauty instead of ashes, gladness instead of mourning, joy instead of sorrow. Those things are within us. They are not based in our circumstances. Nothing about our circumstances needs to change for us to embrace beauty, joy, and gladness. I have grown to trust God more as we have walked through Sophie’s story. And now I realize that this struggle has brought much more glory God than Sophie’s life could have without her struggle. We can rejoice in her amazing progress and praise God for this growth in her life. I wonder, would I really be able to see the beauty of all of this without the struggle? Would I praise the Lord as much as I ought to? I’m not sure. But as we celebrate Sophie’s entrance into the world of verbal communication, I know that my heart is singing praises to Jesus and my feet are moving to a song of gladness as we hear Sophie’s sweet voice in our lives.

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Into Sophie’s World: Surviving Social Settings

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

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

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

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

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

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Into Sophie’s World: The Comparison Game

apraxiakids2Let’s be honest, all us mommies play a dangerous game. We try really hard not to. And sometimes we do really well at it. Sometimes it’s easier at home, in our normal day to day routine, to avoid this game. But throw in a play date, a verbose younger sibling, or even a party at school, and our minds are instantly playing this dangerous game. That child is speaking in complete sentences, and my child cannot utter two words together. Heartbreak for the parent of a child struggling with Apraxia. The comparison game. It’s deadly to our happy, our self-confidence, and our peace.

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

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

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

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

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

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

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