a view from the margins: marginalized kids

kathyescobar a view from the margins, church stuff, crazy making, incarnational, mommydom 11 Comments

marginalizing people is not limited to age.  kids get marginalized all the time, too.  the ones cast aside, avoided,  ignored the  most are probably the kids with special needs.  many people are afraid of them.  sometimes grownups don’t know what to do so they end up doing nothing.  the result:  we unknowingly marginalize kids and families when they need us the most.  Jesus loves the little children.  And he desperately and tangibly loves those that the world is afraid to touch.  special  needs kids can sometimes become “the untouchables” in our churches, communities, schools, and families. in our little community we have a high percentage of kiddos on the autism spectrum and we are learning from each other in incredible ways.  and like so many other stories, if we haven’t lived it, we can’t know what it feels like.

meet “christina”, an amazing woman of strength and courage who passionately loves her little boy and is an advocate not only for him but for other women and children who are unprotected, stripped of dignity, and need someone to stick up for them.  listen to her powerful story of life with her beautiful, smart, creative, son, who happens to have autism.  their story isn’t just about a mom who has a little boy with special  needs;  it speaks to a much wider story about life on the margins.  listen to what it can feel like:

share a little of your background, what kind of family you came from, how you ended up as a mommy with a beautiful child who had special needs?

I grew up in a small town in Wyoming. My mother is Caucasian and my biological father is African American and American Indian. My parents divorced and my mother moved my older sister and I to Colorado so she could finish her BA when I was 14 years old.   I was married at 23 to my college sweetheart. We had been married for 4 years.  I was in the middle of working on my BA when I found out our little baby was coming.  It wasn’t until Jonah was about 9 months that we began to be a little concerned. He wasn’t getting to a sitting position on his own or able to roll over on his own. When I talked to the pediatrician at his 9 month appointment he suggested that we give our baby until his 12 month appointment before we did any intervention. Other than his gross motor delay he was a healthy normal baby. Very happy, sweet and extremely easy…an angel baby.  At 12 months nothing had changed so we started our baby with an Occupational Therapist and then a Physical Therapist. In the mist of this we got Child Find involved to have him tested for other delays. That began our journey into the world of special needs.

what do those needs look like?

From 12 months until 3 years it was mostly physical and speech therapy. Around 3 is when Autistic became known to us as a possibility for our son’s delays, more intensive therapy was suggested:  speech, occupational, physical, preschool, and more.  We had lots of “homework” for me at home to do with him. And at this point I was a single mom with an infant daughter to care for as well.  Our son is smart so he figured out how to get out of our condo when he was 3 years old. He would push a chair up to the door and remove the chain and unlock the dead bold and go to the park alone. My neighbors graciously started looking out for him and us. A double lock had to be installed.   He is now at a typical school for kiddos on the Autism spectrum. He has a full time para with him to support him in the typical classroom. He has occupational and speech therapy multiple times each week.

when you lay in bed in the middle of the night, what are some of the thoughts & questions that rattle around in your head about your life?

I am crazed half of the time. Am I doing enough? Did I make the right decision about the typical classroom?  What new therapy should I try? Should I homeschool? What else should I do to help him? Will he be happy?  Will he have friends? What should I do for our daughter that is typically developing?  How unfair all of this to her! Why him? Am I really the right mommy for this child? I feel like I am always failing him in some way. What the hell God? What am I supposed to be learning here? Is this my fault? Are you watching?  Do you see? I feel so alone….sometimes hopeless. Would life be easier without him? What does normal feel like? On my bad nights I am jealous of people that have typically developing kiddos. Everything can feel so unfair in these dark moments alone in my head.

how have you seen your sweet baby marginalized by people? what has that looked like, felt like?

This is heart breaking for me. People can be so cruel. I have been told I am an awful mother by strangers when he is having a hard day and acting out. I have had neighbors say it is a shame that he is the way that he is. Neighbors have also completely ignored him after they were being kind to him for a while. I had grown adults yell at him for touching their baskets at the supermarket.  If he doesn’t understand someone else’s disfigurement or disability he will ask and is often met with harsh words and cold comments.  He looks so normal and he is so tall that people expect a great deal more of him than he is able to give. People often stare and you can feel their judgment in their eyes. Most parents at his school don’t know how to relate to him so he rarely is invited to birthday parties or playdates. Some parents won’t respond at all if their child has been invited to his party.  Children can be the worst. They tease him, bully him, asking him to do inappropriate things for their enjoyment. I have heard them say he is weird and or crazy more often than I care to remember. Imagine being stabbed repeatedly by a dull knife over and over in the same spot. And imagine it happening after the wound has almost healed. Imagine it happening by adult men, women, children and the elderly. Imagine it happening in your own family.  Some days I can’t breathe or think straight. I get so angry. I have cried oceans of tears. I try to resolve to grow thicker skin. I try not to let the depression sweep me under. It feels like death on the really bad days. Like my own personal hell.  

 

how have you seen your sweet baby marginalized by “the church?”  what has that looked like, felt like?

I would love to say the “church” has been better but they haven’t. The same stares, the same problems with children being flat out mean to our son has happened there. The same feelings of him not belonging have been consistent at the church as it has outside of it. The church seems to hide behind not knowing as their excuse for why the respond the way that they do to our son. But I haven’t seen anyone really try to know. Okay a few but not many at all and even those people have done so because I have asked for help and they haven’t stayed invested . They don’t invest themselves in his life. They do in mine and my husbands but not his. Never his.   It feels like they are relieved it isn’t their child. It is the attitude of seeing a person that is cold and patting them on the arm and telling them….go be warm and not offering a coat. That is the churches’ response to children like my son. Good luck with that….go be warm.

 

 

 

how does the system work against your family?

There is no tolerance for his differences. Everyone wants him to be “typical” and he isn’t. It is no fault of his own but he is the one expected to conform not the other way around. He is always the one that is expected to rise above. I often feel so frustrated when we are the ones having to rise above. He is a little precious loving boy, why must it always be him? When it is his turn? When do we get a break? When do we get to be cruel and judgmental? Of course that isn’t what I want for us especially not for him however it is hard not to go to that place in my wounded soul when we are constantly fighting for basic rights of respect and dignity.  

how have you felt most supported on your journey? what’s helped the most?

 There have been some that have been willing to offer us a coat. They have offered to help us get warm. Saying out loud that they aren’t sure what to do but offer to invest in him anyway is huge. Spending time with him and realizing what an amazing kiddo he is has meant the world to me. My sister is my best example of this. She is always on the look out for support and therapies that might help him. Doing research and asking for books or resources to understand him better.  She also listens to my mother heart and all of my joys and fears about raising this amazing gift God graciously gave to us.

what are some of your dreams for “the church” when it comes to marginalized kids?

 Investing in these kiddos. Taking the time to invest without the families having to initiate it for the church. Learning about what the kiddos need and trying to accommodate them in an inclusive way instead of just turning a blind eye. Being family to families with children with disabilities. Recognizing that while it may be uncomfortable and unfamiliar to them it is imperative that these families have support and a place of safety for their children as well. Sometimes it can get incredibly dark for these families and they need to know that they are loved and their entire families are safe,  loved, known and welcome.

have you experienced situations where “the church” might actually increase shame for struggling families? what has that looked like?

Lots of well meaning people want to give advice to you when you have a child with special needs.  The worst has been when people have asked if they can pray for your child’s healing. UGH!!! I want to scream he isn’t broken. God didn’t forget about him and he just slipped through the cracks. Or screaming louder when they give the trite answers from the Bible about God not giving us more than we can handle. I roll my eyes internally at these unhelpful remarks. But mostly the damage is done because the church seems to be the least able to be inclusive or knowledgeable about our kinds of kiddos. They just don’t seem to care. It doesn’t seem to be their problem. The church has been the slowest at even attempting to accommodate our children. It is almost like our children are the soulless ones and the church cannot be expected to help ones such as these.

how has and does God sustained and strengthened you?

God sends us our angels as I call them. They love us all with such amazing ability.  It stuns me when I really am able to take it all in. Usually it is the specialist that work with him or other families in the same situation we are in and then there are these rare unexpected gifts of people who just get that we need love and compassion to and the dole it out with abandon.  God seems to align people on our broken road in such incredible ways that it can only be from him. And it is always at just the right moments. When my walls are beginning to crack.  A word here, hug there, an offer to help a little…all of these small tangible acts help us to keep going. To continue to fight, to continue to have hope and to continue to love.  Lately he has been helping me to worry less and to trust in his love more. So little by little I am letting go. Finding peace in this moment. Finding hope and encouragement in little ways and allowing that to be enough.

are there any really stupid things christians have said to you along the way that made you want to scream?

YES!!! More times than I want to remember. So frustrating. The biggest one lately is the not knowing how (to relate) be with Jonah. I want to shake them. It is like anything else we do in life.  But what they aren’t saying is that they haven’t tried because they are afraid.  Praying for his “healing” and the trite Christian verses they have thrown at me when I am in the middle of darkness and hell. Christians seem to have a hard time just listening and grieving with those who grieve.

what are some of the things you cry out to God in the middle of the night?

Peace. Wholeness for our son. Not in the way of healing so he will be typical but wholeness so that he is who God has always known he would be. Love and happiness for our son. Protection for him. And hope for the future. There isn’t a lot of hope of people with disabilities. Communities don’t want to be taxed in order to help out people like my son. They are seen as less that human at times. We will protect animals with rights more than we will protect those of us that are so helpless and defenseless. It is so disheartening. I want to scream to God WHERE ARE YOU!!! DO SOMETHING!!!! HELP US!!! HELP HIM!!!

what has a tangible, safe, loving community meant to you? your son? what are you learning about yourself and people and God through it?

It is the difference of life and death for me. My community provides perspective and encouragement and grace and truth. Sometimes I am balancing dangerously close to the edge of the cliff and they pull me back to safety. They remind who I am and they stay with me until I am strong enough to fight again.  Jonah knows he is loved and adored. He is happy. He knows he is safe. He knows how to love in return because of those that have loved and invested in him. He is incredible.  I have learned that the more you understand the feelings of being marginalized the more willing you are to help others. People like us have hearts that expand and make room for others. They just get it. They understand. They have a greater capacity to give of themselves for the sake of another. So I am continually amazed by people. They slay me with their love and willingness to just be present in our lives.

what words do you have for parents who feel so lonely in their journey, especially in church?

Hold on. We are out there. Some of us get it. Tell your truth. Make your lives known. Don’t say you’re fine when your heart is breaking.  Stay in, keep fighting. Know that God can and actually delights in your truth. It doesn’t have to be cleaned up and pressed for you to take it to him. He loves you exactly as you are in this moment no matter what you are feeling and thinking.

what words do you have for “the church” when it comes to journeying alongside families with kids with special needs, what do you want to tell them directly?

Step out of your comfort zone.  Do it afraid. Parents of these types of kiddos do it every day. We do it afraid. We need you. You don’t have to do it all but do something. Make an effort.  Men of the church it is time for you to pour into our children. You have abilities and gifts that women don’t have and cannot impart into our children. We need you. They desperately need you.  Make tangible investments outside of church gatherings. Spend time with these kiddos. Ask questions, do your homework, get educated.  We are not asking something of you that we don’t require of ourselves. This is how we do life with our children. You can do it too. We don’t have any special abilities that you don’t have. We are just loving and living the best we can and we are asking for you to do the same.

thanks, christina, for your tenacity.  oh i know i have a lot to learn from your perspective!  my hope is through your story that parents out there with kids on the margins feel less alone because of you.  and may we, the church, learn what it means to love with abandon, without fear–the ways that  Jesus did–these precious kids & families...

God, please help us see what you see.