Thursday, April 23, 2015

A World I Never Saw Before

For several years one of my biggest fears has been having and raising a child with a disability.

I grew up next door to a family whose youngest child had autism. She was barely able to communicate or care for herself and I saw the stress her parents were under as they attempted to create a "normal" environment for their other children, while meeting their daughter's physical and emotional needs. 

Growing up, I was taught the basic social rules for encountering someone with an obvious disability - don't stare, don't gawk, don't probe or ask impolite questions. While I'm sure my parents were well meaning, and I do believe that it's impolite to stare, the truth is that in practicing these "manners," I developed the mindset that there was something to fear or be embarrassed about for those classified as "disabled."

In my college years I knew several classmates majoring in special education. I always admired their drive and calling, but secretly thought "I could never do that."

Apparently God thought this wasn't a satisfactory answer, and in the last two years he has been transforming my heart and opening my eyes to a community I never stopped to see before.

First, came the birth of our sweet friend Addison. Born with down syndrome, Addison has shown me that God makes no mistakes, and that the labels and limitations the medical community and society may assign someone don't have to mean anything. In turn, Addison's parents and siblings have shown me that raising a child with a disability is nothing to be afraid of. I've seen the worry and stress that Addison's diagnosis has added to their lives, but I've also seen the joy and pride. They've set high expectations for their almost 2 year-old and do everything in their power to help him reach each milestone and ensure that he feels loved. 

Then I stumbled across a job description on a nonprofit website. I say stumble because that truly is a case. It was for a position I didn't think I was interested in, or had any knowledge in - working with young adults with autism and learning differences. But I felt called to applied and subsequently interview. At the end of my first interview I came home transformed. The passion of the staff and the energy and community of the students was incredible. 

The last few months have been amazing. While the organization I work for isn't Christian, everyday I see God at work. I see him in the teachers and advisors who tell their students that they can succeed and focus on their strengths. I see him in the students who accept one another's differences with true patience and understanding. And I see him in myself as I recognize the power of giving hope to a family who thought they'd reached the end of the line.

I could go on forever, but I think this video clip from our recent Gala explains things a lot better. Trevor is a junior (we are a 3 year life skills college) and gave an incredible speech this year (please note that our Gala theme this year was "A Night at the Movies " - thus Trevor's A Knight's Tale costume :)).



So what do I think now?

I think an illogical fear has kept me from getting to know some amazing people. More importantly, having and raising a child with disabilities isn't something I'm afraid of anymore. I know that each and every child God chooses to bless Brandon and I with will be a perfect gift. 

"There is no fear in love. But perfect love drives out fear..."
1 John 4:18





6 comments:

  1. Julianne! This was a great post. I identified myself with every word you said. I, too, work with children with disabilities. I have had the most amazing and scariest experience this past year. I swore I could never do it. But, like you, fear is slowly being transformed into love and passion for these children! Thank you for this reminder on this particular difficult day at work! :-)

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  2. how neat to see God at work! These children have so much to teach and bless us in, in so many ways!

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  3. I just watched the speech and it was such a blessing! Thank you for sharing. It is difficult to think about the struggles that a child with disabilities faces, but I know that in so many ways they are a blessing to those around them. Did you get a job with them?

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  4. I am publishing this in multiple comments because it is too long to be accepted as one comment... go figure. :) I read this post back months ago and have been trying to get back here to leave my thoughts ever since.

    I would like to start by saying thank you for sharing. It is only through loving exchange the world's view of people with special needs will ever change. Thank you for what you do to help those with disabilities reach the potential God has given them. It is not an easy road. It can be exhausting and stressful and those who give their lives to work in the field are almost always underpaid and under appreciated. But as the parent's of a child who we hope will benefit from similar programs someday we are grateful for your love and sacrifice and compassion.

    This post made me equally happy and sad. Happy because there are amazing people like yourself out there changing the future for the Addison's and Trevor's of the world. But sad because the world isn't changing fast enough for Addison's and Trevor's generation. There are still so many people who believe there is no worth or value to individual's with special needs. And there are still too many people who act as if a disability or special need is something we should be ashamed of or hide away. Being different or less than what this world considers "perfect" is not reason for shame and we should be willing and able to not only talk about our needs, special or otherwise, but to address our differences with love and compassion.

    Like you, Allen has always feared having a child with special needs, specifically, down syndrome. Now that we have Addison he realizes such fear was unfounded and what many blessings he would have missed out on had he never had a child such as Addison. Our lives are certainly very stressful and it is indeed very challenging to meet the needs of each of our children and also give Addison the crazy amount of time he requires. In exchange though we, both Allen and I and our children, have received a joy and peace that can only be known by meeting the Lord through great trials. In Addison we see an innocence and love and trust that does not exist outside of his little world. And we have come to know and understand a deficit in this world so great we can't help but look for ways to change hearts. As much as I often miss the predictability of our "old" life and not constantly being in "flight" mode, I have no desire to go back to the life of ignorance and apathy in which I did not understand there were mother's with broken hearts, children struggling and families aching. To be honest, I have little tolerance for most people with "normal" lives. I find their "needs", "complaints" and "problems" so insignificant it frustrates me to hear them. I get a sick feeling in my stomach when I realize we were just like that and did nothing to reach out to those who have so many incredible needs. I don't ever want to be "NORMAL" again and I pray my children are never "NORMAL".

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  5. I know your parent's meant well as they instructed you about how to approach people with special needs. We were given very similar instructions when I was growing up. And I know for my mother and father it was taught with the utmost love, concern and respect for people with special needs. It was hard for me to reconcile that teaching when Addison was first born. Speaking now from a mother's perspective I will say I disagree whole heartily with your parent's teaching. When Addison was born, as you know, there was no where to turn for understanding and teaching. It was a very hard few months as we tried to bypass all the horrible things the medical profession was telling us in order to see what our son's future might be like. It was so important to us to get a first hand account. When we saw people in public with down syndrome we so much wanted to talk to them and their families and know what to expect and what worked and what didn't work. Most of all we wanted to to know that people with down syndrome, despite all accounts doctor's shared with us, could be happy. We had no idea how to approach these people because, like your parent's impressed upon you, we believed it would be rude or insulting to discuss a person's disability. One time I left Walmart in tears because I could not get up the courage to speak to a mother walking with her daughter, a young women, who had down syndrome.

    Addison lacks many of the obvious features of a person with down syndrome so when he was young it was only those who had a lot of experience with down syndrome who noticed his disability. However, now that he is older and still appears to be an infant, we often get into a discussion about his special needs. It starts with someone commenting on how cute our "baby" is. Then they ask his age. And when they learn he is more than two there is the falling face and pitying look of realization that something obviously is very wrong. I always try to jump right into it and explain Addison has down syndrome and suffered brain atrophy from a severe seizure disorder and debilitating treatment. It just makes everyone more at ease if they don't have to ask the question. Once that is out in the open a wonderful discussion always flows from it. One in which I can share the amazing things about Addison, his resilience and determination to live and succeed. One in which I can share about God's sustaining grace and the grace that protects and cares for our son. I have spent hours standing in a grocery store aisle, doctor's office waiting room or other public place in one of these discussions. I always come away from these conversations blessed. And I believe those I am speaking with always walk away with a smile so I am going to assume it is also a blessing to them.

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  6. Furthermore, I make a point of always stopping and talking to people with down syndrome or their families. Just the other day we encountered a family whose daughter, the same age as Addison, also has down syndrome. We were at a ball game and Addison was sitting with the girls and I was escorting Carmella back from the ladies room. A father came by with little Siena in his arms. I first commented on how adorable his daughter was. Her parents are both Italian and she had striking black hair and blue eyes. I then asked how old she was and as it turned out she was two just as I had guessed. Then I said, "I have a little boy sitting over there who is also two years old and he also has down syndrome." From there we talked for several innings. Our entire family and the little girls mother joined in the conversation and in the end we learned that this man was part of the Italian business man's association my cousin belongs to. After getting a much needed referral to a new eye doctor (Addison's eye doctor moved recently) we finally parted ways, but not before exchanging contact info, big hugs (Italians are like that... hugging strangers at a ball game) and the father, Richard, saying how very happy he was I had taken the opportunity to stop him and talk.

    I have never been sorry or upset when someone stopped me and mentioned Addison's disability. And I have never regretted when I approached others. In fact, quite the opposite. I do not find it insulting when people ask questions or want to discuss Addison's needs. I find it a blessing and an encouragement that others care and want to know. And I am always grateful for the opportunity to educate others. In fact, the only thing I find insulting or hurtful is when people pretend nothing is going on in our world or in Addison's life. What I find painful is when people don't reach out or when they ask "how are you doing" and then don't take the time to really listen and understand.

    On the topic of MLC I think it is definitely an interesting thing you have noted when you mentioned they are not a Christian organization and yet you see God working there everyday. I have truly come to believe that is one of God's purposes in allowing people to have special needs. So many people who had no prior belief in God have told me how they have come to know the Lord because they see things happening in Addison's life that could not happen without a God. There is nothing wonderful about a person without dysphagia eating. Children do it every day and no one notices. But when you see a child who was starving to death gain 5 pounds, now that is amazing and people stop to notice and find out what, or who, made it happen.

    I loved Trevor's speech. What he said was beautiful and he presented it exquisitely. Addison sat cheering and clapping through the entire thing. My kudos to your young knight!

    And love to you my precious friend,

    Kat

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