Wednesday, April 2, 2014

on ignoring special needs people

when people talk about causes or issues that don't relate to me, i find it particularly easy to ignore what they're saying.

yes, that was my compassionate opening line, just now.  but if we're all honest, i think we can relate to that statement. you love adoption? meh. you love fitness? ok. you're into oils? fine, moving on.

you know what i mean?

perhaps it's because we're all so inundated with causes constantly on the internet or at church or at school or our kid's school. i think some of the shut out is ok and even needed. no one can champion every cause nor should they. we would all be exhausted humans getting small amounts of 1million things done and i'm not sure how much good that does.

what i do know is that everyone can champion life. because, we're all humans and we're all living and no one is a robot. i think my logic there is impeccable.

the other day before i started "working out", i downloaded a pod cast, thinking it was something else. it didn't download in time and i forgot about it...until i was on the plane coming home from the conference. i was bored and exhausted but couldn't sleep, so i looked in my podcasts and there it was. one lone ranger to listen to. so, why not.

and i sat in my seat and just cried and cried while i listened to a man talk about the value of life. and how the value of our life is simply found in being made in the image of God, not in the contribution we can give society. now, i am particularly sensitive to this as our sweet lila is on that special needs spectrum somewhere. and perhaps i would have ignored this before her. but i don't think it's right as a body of believers to do so...ignoring the value of all life.

at hopespoken there were a few meet-up/share groups on the last night like; new moms, seasoned moms, an adoption group, singles, handmade shop owners, and i lead the special needs moms group.

we sat outside and laughed together about our children licking everything. saying strange things. taking their pants off in the store, because why not. not being able to verbalize when someone asks, what's your name? pushing someone because they can't say they'd like a turn with that toy.
a group where we didn't feel so abnormal saying, we don't fit in at playdates. 
my child doesn't get invited to birthday parties. 
this is hard and i feel alone.
where do we fit into this life?



it was one of my favorite times at the conference. i don't have many friends with special needs kids--where i live or on the internet even. so being connected like this was so refreshing. just to nod our heads at each other and say, i know.

we talked about how God knitted these children in the womb, just like this. knowing the missing chromosomes. knowing the intricacies of their different needs, their special diets, their unique brains, their unusual bodies. he knit them just so and they reflect the image of God in some way. i was just blown back by that thought. that somehow, special needs children reflect the image of God.

their limitless boundaries.
their crazy joy.
how they find no reason to hide emotions.
how they feel so intensely some things.

i see Him in lila so much. and i feel like i have to champion and defend her most of the time. and sometimes i do defend her...but she can do this! see her value!

so when i heard this sermon, i finally really heard someone saying, all of life is important. the ones that contribute, and the ones that aren't born yet, the ones that are born with special needs, the ones that are considered normal. life is valuable simply because every single person reflects the image of christ. you never have to defend your child's value for anything other than simply, because God said So.

i feel a burden to help people understand that my special needs child and others all around the world, are valuable because God made it so. whether you have no experience with a special needs kid or you have plenty, we all need to listen to this truth over and over.

will you take time to listen to it? i promise it will knock your socks off.
(it is addressed to pastors, but pretend like he said i want to address my fellow CHRISTIANS)


SERMON from Paul Martin 

Image of God - Creation - Fall - Redemption - Consummation




33 comments:

  1. love this!!! it is all so true. my lyla has some special needs as well. once i came to terms with it and finally understood it all, it was time to appreciate it and learn from her.

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    1. i go through days of really appreciating it and then other days i resent it. i do love that there is so much to appreciate about the way god made us so uniquely. just forget it sometimes when it gets hard!

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  2. So glad you were able to connect with moms going through some of the same things. When I pulled up your blog, Annie said, "Mom is that Lila and Penelope? When can they come play?"

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    1. truly. we need to get together soon and very soon!

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  3. i don't have any children yet, but even in life, i think it is so so important to get that message. i went to the conference and heard you speak. and i was bummed that i didn't get to actually shake your hand or give you a hug and tell you how blessed i was by your words. before i came to the conference, i personally was trying to find MY purpose, and God held me in his arms and told me "to be my child". i believe that is what he wants, and maybe that is why he doesn't fret over special needs children, or physically handicap children, or children that the world sees as different. he simply wants us to "be his children", and that is our purpose. thank you for sharing your thoughts.

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    1. sorta made me tear up. we are all called to be his child. so good.

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    2. "to be my child" - oh this is the truth, the words. tears...

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  4. i will listen! came at just the perfect time. taking my son to developmental ped soon and feeling so alone dealing with all of his unique issues. not many people can understand my frustration with a son who has so many challenges so i tend to just keep it to myself. of course i then find myself defending his behavior pretty regularly because no one has any idea what is going on with him. so frustrating. i have followed your blog for a long time and have watched you deal with having a special needs child with such grace and compassion. thanks for the link and for being a great example!

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    1. it's a pretty lonely place. i think some of it is good...to need that space. but man it feels so good when someone can relate!

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  5. this is beautiful and spot on. every. single. child. was made in the image of christ. and every. single. child. is special because god said so. love this. this is a great reminder for me as a momma and as a middle school teacher. sometimes with middle schoolers it is hard to see past all the "stuff "and see the child in there. we have to fight for our children. i have to fight for my students. because god said so.

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    1. so so so true. and middle schoolers...you have a gift! but yes, they are all uniquely made in his image. we forget so quickly!

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  6. Beautiful! And so perfect on Autism Awareness Day. I love finding the beauty in the simplest accomplishments in my autistic son. He helps me be more appreciative of the little day to day things.

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    1. i had no idea!! lol. you'd think i'd be more aware of things. but god knew. and i guess gave me the nudge...too funny!

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  7. Thank you for the link to that sermon. I just listened to it, watching Faith play on the ground. I take for granted that others will see what I see when they look at her: perfection. She's the very best, extra chromosome and all. I pray that people will see her before they see Down syndrome. Down syndrome is only a small part of who she is.

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    1. i sometimes feel like people see lila when they interact with her. sometimes i think they see the strangeness. but i like that prayer of them seeing the image of God before they see the need.

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  8. Love this and agree so much...I'm a pediatric occupational therapist and I teach a ballet class for children with special needs. I wish sweet Lila could be in our class!

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    1. Omg. I so wish I could find a class like that for Lila!! You're such a treasure to those families.

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    2. I know this is an old post but I wanted to tell you Miss Diannas School of Dance (it's up north-North Oak and 86th) has a special needs dance class. It's called Dancing Thru Autism but if I remember the blurb right it's for all special needs.

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  9. Each time I see on IG that you've posted about Lila or special needs in general, my heart sort of leaps. I try to verbalize my feelings about this topic & I can decide if nobody really understands or if I'm just way too sensitive. Then I read this post ( & others) & I'm like "Yes! Exactly!" I was doing so well at keeping my composure until the line about never having to defend my child's value- valuable just because she's created in His image. I've known that from day one but I've always felt this weird apologetic sort of "sorry- we'll be out of your way momentarily" toward others - then angry with myself for not being better at this journey for her sake. (See- I'm rambling.) anyway- I appreciate your heart on this matter. So encouraging to me & others.

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    1. Right there with you. He says something like that in the sermon and I cried pretty hard on the airplane! Ha. The poor people next To me.

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  10. "you never have to defend your child's value for anything other than simply, because God said So."
    Favorite.

    (also, it's fitting and hilarious that I am now being asked to "Please prove you're not a robot" You have made the internet defensive.)

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    1. You're my fave. I was so blessed by you this weekend. I felt like we were kindred spirits in some ways. Or we're you just awkwardly laughing at my inappropriate jokes?

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  11. "and the trees of the field clapped their hands"...at that beautiful reminder and declaration. thank you for this, jami. you know, i started following your blog more after my friend reina, who bakes delicious cookies, shared your tweet about your love for her cookies at a conference a few weeks ago. random, yes, but i am glad i followed that little blurb in social media;) your honesty and love for Abba God and what you share here is breathtaking and i am thankful. we have a son with special needs and though we adopted him, this journey is never something i planned but something our God authored. and i can only imagine how beautiful and refreshing it must have been for each of those mommas to sit and share their own stories and be reminded that they are not alone. thanks for sharing, not forgetting, and reminding us not to ignore;) i shall listen to that sermon right now as i try to rock adam and calm him down;) - jessica

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    1. Omg. Don't even get me started on those cookies. They are from The Lord!

      And glad you're following along on our journey. It's nice to know you're not alone!

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  12. Jami-You are certainly not alone! I am a mama of a daughter who has special needs and her life has displayed the glory of God in such beautiful ways and to so many people (especially me). It's wonderful and hard and heartbreaking and glorious all wrapped up together. I blog about our whole crew but here is a link specifically to a very tender moment between my daughter and me and Jesus that I hope will encourage you.

    http://andrewandashley.blogspot.com/2014/01/grasping-for-love.html

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  13. Jami, this is great! I'm a bit ashamed to admit that as a former special education teacher turned in-home childcare provider, a mommy of a child with special needs and a big time introvert, I have ignored special needs people that I don't already have a relationship with personally. Most of the time I want to approach individuals with special needs or other mothers, but I get nervous because I just don't know what to say. I also over-analyze practically everything I say and I'm worried I will offend someone. Lame excuse I know...giving into worry instead of glorifying our Lord by showing love to everyone. Could you offer any advice on what to say when approaching someone?

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    1. Also; to clarify, I'm great at smiling and making eye contact (so not completely ignoring), just not so great at initiating conversation ;)

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  14. thank you for sharing this sermon and for your raw and beautiful words. you are a blessing to us special needs mommas as someone who just gets it and you are a blessing to the rest of the world to help them to just get it. i just love "because God said so."
    amen, sister.
    xoxo.
    http://www.capturingmotherhood.com/

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  15. This is beautiful and gets right to the heart of the matter.
    Recently God highlighted to me that I have been taking a miss on life. Choosing to stay home, RSVP in the negative to parties and generally avoid taking my three special needs children out into public. I had made excuses about it being too hard on them, too difficult on us.
    The truth was I don't want to bother the world with my children. Ouch. That was the condition of my heart. Me, the supposed advocate. I had essentially said, everyone else's values are greater than yours, kids.
    I was totally convicted and have started making a Herculean effort (for a fellow hermit) to say yes to life.
    After all, the world has a special need for our kids.

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  16. This was great. I think we really miss out on knowing some great people b/c we often just don't give them a chance...ya know? Love her name btw ... I have a Lyla :)

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  17. So much of this blog post I was just saying "YES" outloud (yeah, my kids and husband are used to this by now, haha). It's taken me such a long time to accept Rylie and not try and make her "normal". For so long it grieved me that she wasn't going to just catch up with the other kids and my idea of having a daughter (tea parties and manicures) may not or probably will not go the way I imagined it. Today I can say that I am truly happy to know Rylie and see what God has in store for her. She's amazing, especially because she's not "normal". What a blessing, and a challenge and constant question mark, a maker of silliness, a daily amazement. Loved meeting with you ladies at Hope Spoken, my soul sisters in a odd way because of these unique blessings that God has entrusted to us. Hugs to ya'll Jami!

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  18. I have 5 little people terrorizing our house. The youngest has multiple special needs. I found your blog and have started at the front and I'm slowly reading back. Thank you. These kids deserve attention and love and everything else the world has to offer. I used to blog a lot at lifeinaflash.org but I am in a season of silence right now :) Enjoying your writing immensely!

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