Then and Now...
I wrote these words and posted this video on November 10, 2011.
"When spoken words won't easily flow through his lips, music transcends. Love translates. I know the power of connecting when words are few and far between. I cherish it. I bind it in my heart. Celebrate it. I adore the pure happiness in my little boy's heart and written across his face. Today, I won’t compare. I won’t count anything but the wins. I won’t take this for granted. Thank you, Lord. Thank you for choosing me to be Alex's "Mommy". He is the light of my life."
Seven years ago today, Alex was just shy of his 8th birthday. Back then, many of our conversations revolved around safety. How can we keep him from running into traffic or walking away with a stranger or reaching up and touching the burners on the stove?
Seven years ago today, Alex was just shy of his 8th birthday. Back then, many of our conversations revolved around safety. How can we keep him from running into traffic or walking away with a stranger or reaching up and touching the burners on the stove?
Today, seven years later, he's just shy of turning 15 years old. 15. Now, our conversations revolve around the future. What will fulfill him? How can we ensure his happiness? What will best prepare him for life? How do we teach him job skills? Are we doing enough? How can we do more? Should we be doing something, anything different? How can we make certain he will find his life meaningful? Can we safeguard his heart? He's the purest soul. Our gentle giant. Every single day, the distinct sound of fear shouts at me from my innermost being. It's dark and lonely and scary.
Right behind the overwhelming fear is jealousy. There are times I long for what others have so much, I can taste it in my mouth. It is bitter. Sour. Disgusting, this jealousy. I carry it around like a ball and chain. The cunning whisper on my heart. It’s dark and ugly and shameful. I am ashamed to feel this way.
Then guilt sets in. I haven't done enough. I didn't advocate wisely soon enough. I trusted too much. I gave too little. I'm not Christian enough. I don't believe enough. I don’t trust enough. My faith isn't big enough. I can't let it go. I'm weak.
Always, I circle right back to the fear. I'm so. very. tired. of. worrying. Does it ever stop? Probably not. Sometimes, I pray it will stop. Sometimes, I beg God to make it stop. To take this constant pit in my stomach, the choking back of tears, the lumps in my throat, the panic that wakes me in the middle of the night, these thoughts in my mind and just make it stop.
I'm not sure it will ever stop. In fact, I don't think it ever will. Because I love him. Because I am his mom. Because he's my son. Because he is part of me. Because he needs me.
Why in the world am I putting these feelings from the very depths of my heart out here for the world to see? Because Alex’s future depends on it. His future depends on being included with YOUR kid. Yep, yours. Right now. Want to know why? Early segregation ensures later segregation. He's living proof of that fact.
Not one study since the 1970’s has shown an academic advantage for students with disabilities when segregated in special needs classrooms; yet only 17% of students with cognitive disabilities are included in high school general education classrooms. The reality is that there is not another group of Americans that are as systematically segregated and underestimated in modern day society as those with disabilities.
It might surprise you to know that schools across the country – from pre-k through college – are successfully including students with significant disabilities and differences. We must broaden our understanding of what intelligence is. Do some soul-searching and ask yourself - can an attempt to measure a person's intelligence predict that person's value or ability to contribute meaningfully to the world? Sit with that question a while. What are your thoughts?
In January of this year, I woke up in the middle of the night, panicked by a clear vision of Alex well into adulthood. I was devastated by what I saw. Heartsick. I still am. One of many things that occurred to me in the wee hours of that morning is that Alex doesn't have a single friendship with any of his peers in general education classrooms. That makes me terribly sad for the scores of teenagers who have thus far missed out on the opportunity to know such a loyal, kind, pure and incredible young man. I’m now on a mission to change the trajectory set forth for him when he began kindergarten 9 years ago.
How can we expect students in general education classes to befriend their peers in special education classes if they are kept separate throughout their school careers? How can we expect companies to hire individuals with differences if their leaders don’t know them? Our kids with disabilities have to grow up alongside their typically developing peers if we want them to be included in the workplace and included in their community post-high school. Inclusion really does start at school, then branches out into our neighborhoods, our places of worship, our streets, our community.
Please understand, this is in no way a blast against public schools or schools in general. In fact, I should disclose that I work for, love and am deeply committed to our local school district. I want to be a changemaker. A helper. A team member. I want to convince all of those with doubt that this is a good and beautiful thing. That it's okay, and preferred, for all of us to be unique in our own ways. I want to address fears and misconceptions. I want to champion inclusion - true, authentic inclusion. Not the watered down version trying to satisfy the mom who is advocating or the IEP requirement. I want to help change the deeply embedded and prevalent mindset that those who are nonverbal or limited verbally and therefore cannot prove their IQ must have a low IQ. The only thing we know for certain about these individuals' brains is that they are totally different. NOT damaged. NOT dysfunctional. Just different.
In honor of Alex’s upcoming birthday, and as a gift to him, I challenge you to find ways to be more inclusive in your workplace, in your neighborhood, in your church, in your schools and in your community. Anywhere. Everywhere. Talk to your friends, your kids, your grandkids, your nieces and nephews and the like about what it means to not only accept, but to genuinely include others who may be different from them. Give it a try. Let me know how it goes. Suggest someone you know do the same. Send them here to get involved, ask questions, get advice or give advice.
Befriending, getting to know and truly including someone outside of your bubble just might be the best thing you never knew you needed.
Right behind the overwhelming fear is jealousy. There are times I long for what others have so much, I can taste it in my mouth. It is bitter. Sour. Disgusting, this jealousy. I carry it around like a ball and chain. The cunning whisper on my heart. It’s dark and ugly and shameful. I am ashamed to feel this way.
Then guilt sets in. I haven't done enough. I didn't advocate wisely soon enough. I trusted too much. I gave too little. I'm not Christian enough. I don't believe enough. I don’t trust enough. My faith isn't big enough. I can't let it go. I'm weak.
Always, I circle right back to the fear. I'm so. very. tired. of. worrying. Does it ever stop? Probably not. Sometimes, I pray it will stop. Sometimes, I beg God to make it stop. To take this constant pit in my stomach, the choking back of tears, the lumps in my throat, the panic that wakes me in the middle of the night, these thoughts in my mind and just make it stop.
I'm not sure it will ever stop. In fact, I don't think it ever will. Because I love him. Because I am his mom. Because he's my son. Because he is part of me. Because he needs me.
Why in the world am I putting these feelings from the very depths of my heart out here for the world to see? Because Alex’s future depends on it. His future depends on being included with YOUR kid. Yep, yours. Right now. Want to know why? Early segregation ensures later segregation. He's living proof of that fact.
Not one study since the 1970’s has shown an academic advantage for students with disabilities when segregated in special needs classrooms; yet only 17% of students with cognitive disabilities are included in high school general education classrooms. The reality is that there is not another group of Americans that are as systematically segregated and underestimated in modern day society as those with disabilities.
It might surprise you to know that schools across the country – from pre-k through college – are successfully including students with significant disabilities and differences. We must broaden our understanding of what intelligence is. Do some soul-searching and ask yourself - can an attempt to measure a person's intelligence predict that person's value or ability to contribute meaningfully to the world? Sit with that question a while. What are your thoughts?
In January of this year, I woke up in the middle of the night, panicked by a clear vision of Alex well into adulthood. I was devastated by what I saw. Heartsick. I still am. One of many things that occurred to me in the wee hours of that morning is that Alex doesn't have a single friendship with any of his peers in general education classrooms. That makes me terribly sad for the scores of teenagers who have thus far missed out on the opportunity to know such a loyal, kind, pure and incredible young man. I’m now on a mission to change the trajectory set forth for him when he began kindergarten 9 years ago.
How can we expect students in general education classes to befriend their peers in special education classes if they are kept separate throughout their school careers? How can we expect companies to hire individuals with differences if their leaders don’t know them? Our kids with disabilities have to grow up alongside their typically developing peers if we want them to be included in the workplace and included in their community post-high school. Inclusion really does start at school, then branches out into our neighborhoods, our places of worship, our streets, our community.
Please understand, this is in no way a blast against public schools or schools in general. In fact, I should disclose that I work for, love and am deeply committed to our local school district. I want to be a changemaker. A helper. A team member. I want to convince all of those with doubt that this is a good and beautiful thing. That it's okay, and preferred, for all of us to be unique in our own ways. I want to address fears and misconceptions. I want to champion inclusion - true, authentic inclusion. Not the watered down version trying to satisfy the mom who is advocating or the IEP requirement. I want to help change the deeply embedded and prevalent mindset that those who are nonverbal or limited verbally and therefore cannot prove their IQ must have a low IQ. The only thing we know for certain about these individuals' brains is that they are totally different. NOT damaged. NOT dysfunctional. Just different.
In honor of Alex’s upcoming birthday, and as a gift to him, I challenge you to find ways to be more inclusive in your workplace, in your neighborhood, in your church, in your schools and in your community. Anywhere. Everywhere. Talk to your friends, your kids, your grandkids, your nieces and nephews and the like about what it means to not only accept, but to genuinely include others who may be different from them. Give it a try. Let me know how it goes. Suggest someone you know do the same. Send them here to get involved, ask questions, get advice or give advice.
Befriending, getting to know and truly including someone outside of your bubble just might be the best thing you never knew you needed.
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