Friday, May 2, 2014

series: for those without special needs children, part 1

i think there are lots of places out there where parents of special needs kids can get support. we can look online or join a support group. it's really nice to read about other people's experiences with their special needs kids--it makes my life seem a little less alone.

but this series isn't really for those with special needs kids, it's for those of you whose children would fall in the "normal" range or for those of you without children. i do this for a couple of reasons, but mostly because i'm sure it feels awkward not knowing how to react to our kiddos or to us--the parents. or perhaps you live in a pretty closed in world and haven't ever thought about what it means to be friends with a parent who  has a special needs child. maybe it's not on your radar. i want to help with that.

so i'm just starting a conversation that will hopefully be helpful and eye opening. it will be an honest place. where we set our awkwardness aside and look at this stuff straight in the eye. we'll face it together, instead of saying, that is your deal, not mine. these are all god's children made in his image and i want to help you see that if you don't already. i want to help you link arms with parents you know with special needs kids, not avoid them because of the differences their family has with yours.

so here goes. i asked a couple special needs mamas the same questions. we'll start with mother of 3, natalie falls this week. i got to know her at hope spoken and she is a treasure.



1) give a brief explanation of your child's special need and age.
Elias is 4 1/2 and has Down syndrome.





2) what is important for me to know about your child?
The most important thing to know about Elias is that he loves living life along side people. He thrives off of love.


3) what is something that is deeply hurtful about interactions with others, pertaining to your child?
When Elias gets frustrated he will start yelling really loud. It can be hurtful when people are annoyed with him. I've learned to ignore their disapproving glares.


3 and 1/2) can you think of a super positive interaction with other people, in dealing with your child, that left you smiling?
There was one day that Elias was having a really hard time in the grocery store. The lady that checked me out was so loving towards Elias and wasn't intimidated by his loud yelling. She asked him if he wanted to help her put the groceries in the bags. One by one, Elias bagged all our groceries with a huge smile. Even though our line grew longer by the minute, the sweet cashier valued my son more than what people thought of her. I left that store with tears of joy.


4) what is helpful from me when i interact with your child?
Treat him like any kid. He has hobbies and interests like any four-year-old.


5) sometimes i don't know what to say. what are good questions to ask about your child?
I love being asked questions about my son. I don't expect you to ask things perfectly or know everything about a person with Down syndrome. If I know you care to know about my son, then you can ask me anything.


6) what do i do when your child is acting out and i'm standing right there?
You don't have to do anything. Just be patient with him, and me.


7) how has the gospel intersected your experience with your special needs child?
This has been huge in my life! I have been given a knew understanding of what being made in the image of God means. Because of Elias' life, I value people more. I value imperfection, because when we are imperfect we need something to complete us. Elias has been a reminder to me that we all need the perfection of Jesus Christ. We are all broken and imperfect without Him.


8) what are some ways i can help you?
The best way you can help me is to walk alongside of me. I don't always know what I'm doing as a mother to a son with Down syndrome. I'm figuring things out day by day and it means so much to have someone to walk this unknown road with me. One of the sweetest things on this road is laughter. To have someone to laugh with when things get a little awkward means more to me than you'll ever know.

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i'll try and post one of these interviews every week or so, so stick around.

18 comments:

  1. I love this! I'm SO who you're target audience on this one! I have a 3-year-old daughter who's going to be a peer model in her preschool in the fall. I have no idea what to expect from it all or how to equip her. Last night we were at a store and she acknowledged out loud for the first time a child who had an obvious difference (although in this case it was a physical need, not that the child was special needs). She said, "Mommy, that boy is in a wheel chair!" and then they both just looked at each other, checking out the situation like children do, eyes and minds sucking everything in. I just said, "Yep, he is! can you say, 'hi?'" and she did and then their connection broke and we all went on perusing the clearance section for good deals. I thought it was great because it was just so simple and matter of fact. I've had the same interaction except with her saying something like, "oh, there's a little boy over there." It lasted maybe 10 seconds and was such a non issue. I want that to continue to be the case for my girl I want her to come across people all through life who are different than she is and have it be something she notices (because it's amazing, all the different ways God's made us) and have it be a non issue. Thanks for sharing, Natalie! I look forward to this series, Jami!

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  2. Jamie, I work for an agency that provides residential services for people with developmental disabilites. We have adults (and a couple kids) of all ages and different levels of disabilites, people with Down Syndrome, people with Prader Willi Syndrome, people who are very high functioning and people who completely depend on our staff to bathe, feed, change them, and so much more. They live in their own homes or apartments, as independently as they can! There are so many of us that love them and are here to help them lead full and meaningful lives, including your little Lila. I see it every single day. Lila WILL have such a happy life. She will have challenges as we ALL do, just in different ways. I just want you to know that her future as an adult is bright and I am sure it is probably hard for you to see that right now. You are doing an excellent job as her advocate and you just have to keep working with her and the doctors to find what works for her in therapy and stay on it. I will be here to celebrate her milestones along side you...through the internet! Oh and this all goes towards your hubs too, you aren't in this alone!

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  3. I just love this- and interviewing Natalie was such a great choice! She's a def inspiration to me. We've been regulars at Texas Children's hospital since my Morgan was born 9yrs ago. Having her, and then walking those halls & forming relationships there has forever changed me. Special needs no longer feels like a handicap or a wound- but more like an honor. A chance to see Jesus and make him known in a way we might never have experienced otherwise. I still hurt for those who hurt physically & emotionally- but having Morgan teaches me to look beyond the hurt. Again, I love this- thank you so much!

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  4. Love this and it's so helpful. This advice can be applied to many different areas. My mom used to work in a State School and then group homes for special needs adults. I never realized it then, but she gave us a foundation for caring for all people. I mostly have a fear of saying the wrong thing, as I know I've been offended by lots of comments, even if well intentioned. Like she said, we are all in need of the perfection of Jesus Christ and that happens as we embrace who we are in Him. I'm really not even sure if Lila knows me, but she always smiles at me and it makes my day every time :)

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  5. Gahh, this is so helpful! Thank you! So often I am overcome by awkwardness, and not wanting to hurt other people, that I avoid situations, rather than coming along side. I just didn't know what to say, or how to act. This is great!!

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    1. Christina, you took the words right out of my mouth!

      Jami this series will be a blessing for so many; thank you!

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  6. ah! this post! tears in my eyes....thank you thank you for doing this. most of my friends are moms, and as a hopeful mom myself, i want nothing more than for them to feel like they can be moms around me...that i'm not the weird, uncomfortable non-mom getting annoyed with their children when they throw fits or get upset. and it means so much to me to learn more about how i can be supportive and loving to friends with special needs kids.

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  7. This is frustrating for me. I do not have a child with special needs, but I am a teacher to children with special needs. Being on the outside is not hurtful in the same ways as being the parent, but there are similarities. Teachers care for the child and the parents and when a teacher sees someone acting hateful or even awkwardly towards the child it hurts us in the same ways. But we also feel for the family of the child and for the other person too, because usually they do not understand that their actions are being hurtful. Adults don't always see things from the point of view of others. This is a fantastic post - one I would love to share with my high school students that work with the elementary and middle school kids. .

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  8. Excellent series, Jami! Recently, a mom that I barely know asked me about my son (he's 2, with Down Syndrome) and I realized that it was the first time in a long time anyone had talked with me about his special needs. It's tough even for close friends to know how to dialogue with us about these issues. And I totally get that, I was there once too. I'll be sharing this series so others can be encouraged and informed. And, I absolutely love Natalie; her writing has been such a blessing to me. Jesus and laughter--yes, these are essential :)

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  9. thank you. thank you. thank you. being a mom of a special needs kiddo is hard work. helping others understand his issue is even harder. i hope this post helps many "normal" families understand a little bit more about those of us whose family may not look or function exactly like theirs!

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  10. I love this! I grew up with a mentally challenged brother and I feel like I was/am always helping others understand. It is near and dear to my heart! Thank you!

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  11. What a wonderful, gentle and practical way to advocate.

    My good friend has a beautiful daughter with extensive brain damage and health issues. One day while wheeling her in her special stroller with her IV bag and oxygen tank through the store, she was stopped by an elderly lady. "What beautiful red curls she has! And how is she doing?" She asked brightly. After chatting a bit the lady said,"You must be one amazing young woman that God entrusted you with this precious gift."

    It blessed my friends socks off.

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  12. I love this series! I am not a mother of a special needs child but I am a mother and I worked with special needs children through high school volunteering. They absolutely touched my life. It is great to hear these questions answered in such an honest way. "I dont always know what I am doing as a mom to a son with Down Syndrome" <-- well, i don't always know what I am doing as a mom to a son without it, so even though we our experiences are different, we are still connected as mothers just trying to learn and grow. Thanks for this.

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  13. THANK YOU for doing this! I think this is such a valuable thing to learn other's stories and understand some things we might otherwise not. I love this.

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  14. Natalie was my instant friend at Hope Spoken. Thank you for sharing her words. She is a treasure!

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  15. Just starting to read blogs again and MY. GOODNESS. THIS. IS. GOOD. This whole series idea. Brilliant. #7 SO SO GOOD. Thank you, Jami.

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  16. thank you for doing this! and thanks to natalie for sharing!

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