Yesterday, I read a post from an acquaintance who is my Facebook friend. She wrote transparently about her recent struggle to accept the fact that her son who has Down syndrome has now been given an additional diagnosis of autism spectrum disorder. She shared that it has been hard to find where exactly her son and her family fit in, because even within the group of families of kids with Down syndrome that she is very connected to, her family's struggles and challenges have been very different.
It's true that my son's facial features are more angular than are typical of Down syndrome. It's true that his behavior most often reflects his autism diagnosis. It's also true that he was created with a third copy of chromosome 21, no matter what he looks like or how he acts. What other people see, does not change who he is. I hypothesize that this might be how the mom of a bi-racial child feels at times, as if her child does not belong to one group or the other, frustrated that her child is not recognized for ALL of who they are, but instead the focus more often is on the parts of who they are not. When all is said and done, I am content that our family is a part of BOTH of the sub-cultures, Down syndrome and autism spectrum disorder. I have found connections with and encouragement from families of each group. In truth, we all have in common that we are thriving and struggling with the blessings and challenges of our children, no matter what labels are attached to those blessings and challenges. In truth, each of us is more than who the world sees and judges. "For you are a holy people, who belong to the LORD your God. Of all the people on earth, the LORD your God has chosen you to be his own special treasure."
Deuteronomy 7:6 NLT
My Facebook friend wrote in her post, "When we were first diagnosed with ASD (autism spectrum disorder), I was angry at God, how dare he add THIS to the plate of (my son's) list of challenges. I heard him speak very clearly to me 'I want you to advocate for children with Autism, too.' I felt so ill equipped, so unprepared. I am now ready to enter into battle, ready to stand up and fight for children with a variety of abilities. A pastor once said to use our fight for good, for BIG, important things, so here I go... Proverbs 31:8. 'Speak up for those who cannot speak for themselves, for the rights of all who are destitute.'"
I myself believe that my friend, this woman of God, is on the right path. I believe she has recognized and accepted God's truth that her branches are double in number, and that as she continues to nourish her strong roots with the nutrients specific to what her family tree requires, the result can only be that she will bear more fruit! "But the seed in the good soil, these are the ones who have heard the word in an honest and good heart, and hold it fast, and bear fruit with perseverance." Luke 8:15 NAS
I don't know about you, but I have learned to be honest with God about what I am thinking and feeling. I figure that he already knows anyway, and I know that if I open my heart to him, if I seek him out in my struggles, he promises to hear me. So, if I have a question or a doubt, I bring it to God - I pray and I listen and I read his Word and, eventually, he answers me. "This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us." 1 John 5:14 NIV
God, I don't understand why this is happening and why it's happening now...
"Now we see things imperfectly, like puzzling reflections in a mirror, but then we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely, just as God now knows me completely."
1 Corinthians 13:12 NLT
God, I am afraid that I can't do this...
"Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand."
Isaiah 41:10 NIV
God, my soul is wounded..."He heals the brokenhearted and binds up their wounds."
Psalm 143:3 NIV
"Wounds are what break open the soul to plant the seeds of our growth."
-Ann Voskamp
When my soul is wounded, God heals my broken heart with his seeds of growth. He binds me up with his Word to his promises, just as the gardener binds a broken tree branch to firm supports. He strengthens my weakness with his nourishing power and allows my growth to be glorifying to him by the work that he accomplishes in my life. I will forever be grateful for the identity he has given me as his own child, for the invitation he gives to our family to place him at our center, and for the knowledge that no matter the world's opinion, we will always belong to him.
This mom's journaling of her feelings brought to my mind the circumstances which I have occasionally found myself in concerning my own son, who also has the dual diagnosis of Down syndrome and autism spectrum disorder. I very much understand the feeling this other mom is expressing about not quite fitting in. I have actually had people disagree with me when I have shared with them that my son has Down syndrome and autism. They have said, "He doesn't look like he has Down syndrome - are you sure that's right?" or "I have lots of experience with Down syndrome and I can tell he doesn't have it." I've usually smiled and said, "Yes, I know some things about him are a bit different than the classic picture that usually comes to mind when you think of Down syndrome, but I'm very confident in the accuracy of his medical professionals!"
As time has passed, and I have puzzled over these random yet personal opinions about my son that have been shared with me without hesitation, God has revealed to me this truth: Isn't it amazing, how even in a group which society lumps together with its stereotypical thinking, isn't it amazing that when you take a closer look at the people who make up that group, there is actually a hugely significant amount of individualism? Isn't it amazing how that individualism points to the TRUTH, so that we never have to believe the lie we are being told more and more often - the lie that says every person God has created does not possess infinitely unique value? I love how God intentionally builds truth into our lives, so that when we look for it to shine a light on the shadow of deception, the truth is right there for us to discover - amazing! "For you were once darkness, but now you are light in the Lord. Live as children of light (for the fruit of the light consists in all goodness, righteousness and truth)" Ephesians 5:8-9 NLT
It's true that my son's facial features are more angular than are typical of Down syndrome. It's true that his behavior most often reflects his autism diagnosis. It's also true that he was created with a third copy of chromosome 21, no matter what he looks like or how he acts. What other people see, does not change who he is. I hypothesize that this might be how the mom of a bi-racial child feels at times, as if her child does not belong to one group or the other, frustrated that her child is not recognized for ALL of who they are, but instead the focus more often is on the parts of who they are not. When all is said and done, I am content that our family is a part of BOTH of the sub-cultures, Down syndrome and autism spectrum disorder. I have found connections with and encouragement from families of each group. In truth, we all have in common that we are thriving and struggling with the blessings and challenges of our children, no matter what labels are attached to those blessings and challenges. In truth, each of us is more than who the world sees and judges. "For you are a holy people, who belong to the LORD your God. Of all the people on earth, the LORD your God has chosen you to be his own special treasure."
Deuteronomy 7:6 NLT
My Facebook friend wrote in her post, "When we were first diagnosed with ASD (autism spectrum disorder), I was angry at God, how dare he add THIS to the plate of (my son's) list of challenges. I heard him speak very clearly to me 'I want you to advocate for children with Autism, too.' I felt so ill equipped, so unprepared. I am now ready to enter into battle, ready to stand up and fight for children with a variety of abilities. A pastor once said to use our fight for good, for BIG, important things, so here I go... Proverbs 31:8. 'Speak up for those who cannot speak for themselves, for the rights of all who are destitute.'"
I myself believe that my friend, this woman of God, is on the right path. I believe she has recognized and accepted God's truth that her branches are double in number, and that as she continues to nourish her strong roots with the nutrients specific to what her family tree requires, the result can only be that she will bear more fruit! "But the seed in the good soil, these are the ones who have heard the word in an honest and good heart, and hold it fast, and bear fruit with perseverance." Luke 8:15 NAS
Ann Voskamp recently published a blog article titled, How Your Life Really Can Change [and what to do when change comes]. She pointed out that,"The same Jesus who turned water into wine... can change your wounds into wisdom... kids can change, minds can change, the world - your world, can change. And there is not anything to fear. Change is as positive as the promises of God... There is no soul growth without change, no change without surrender, no surrender without wound. Wounds are what break open the soul to plant the seeds of our growth."
"Wounds are what break open the soul to plant the seeds of our growth."
-Ann Voskamp
I don't know about you, but I have learned to be honest with God about what I am thinking and feeling. I figure that he already knows anyway, and I know that if I open my heart to him, if I seek him out in my struggles, he promises to hear me. So, if I have a question or a doubt, I bring it to God - I pray and I listen and I read his Word and, eventually, he answers me. "This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us." 1 John 5:14 NIV
God, I don't fit in...
"Don't become so well-adjusted to your culture that you fit into it without even thinking. Instead, fix your attention on God. You'll be changed from the inside out. Readily recognize what he wants from you, and quickly respond to it..."
Romans 12:22 MSG
Romans 12:22 MSG
God, I don't understand why this is happening and why it's happening now...
"Now we see things imperfectly, like puzzling reflections in a mirror, but then we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely, just as God now knows me completely."
1 Corinthians 13:12 NLT
God, I am afraid that I can't do this...
"Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand."
Isaiah 41:10 NIV
God, my soul is wounded..."He heals the brokenhearted and binds up their wounds."
Psalm 143:3 NIV
"Wounds are what break open the soul to plant the seeds of our growth."
-Ann Voskamp
When my soul is wounded, God heals my broken heart with his seeds of growth. He binds me up with his Word to his promises, just as the gardener binds a broken tree branch to firm supports. He strengthens my weakness with his nourishing power and allows my growth to be glorifying to him by the work that he accomplishes in my life. I will forever be grateful for the identity he has given me as his own child, for the invitation he gives to our family to place him at our center, and for the knowledge that no matter the world's opinion, we will always belong to him.
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