Tuesday, May 27, 2014

for those without special needs children: part 3


today we're sitting down chatting about special needs kiddos with hannah singer. she is one of my faves out there in bloggy land and i love her heart for the Lord and tenacity for pressing into the hard things.






1) give a brief explanation of your child's special need and age. 
elijah is autistic and five years old. (he was diagnosed with autism at three years old)

2) what is important for me to know about your child?
this is hard to narrow down, because i want you to know everything about him! and i want you to want to know. the greatest thing i would say is that elijah is exactly who he's supposed to be. he doesn't need fixing, he needs to be loved, seen and understood. he's passionate and intense, hilarious and kind.
he loves to share. things, people, experiences. he wants you to explore and enjoy life with him. always assume this, even if he doesn't seem interested. take a leap and try to join in! i love seeing him light up when he's being engaged!

3) what is something that is deeply hurtful about interactions with others, pertaining to your child?
unfortunately, i'm still hurt by many things. thankful that the lord is gracious and teaching me to be more gracious myself, while still being the best mom for my son.
for a long time what hurt the most was the irritated stares we'd receive during a meltdown in public. now i feel more confident in those times, trying to be kind to others and focus on helping my son. now, i'm seeing it stings me even more in positive situations. elijah makes strange sounds sometimes, runs around and yells, chases people. he's excited and happy. and he wants to show you something or join in play. he's a tall kid, and comes on strongly for peers, and often annoys older children. just last week, we were alone at a park, a family showed up with their son. elijah was out of his mind with glee! the boy tried to play alone, and elijah kept shouting "hey, friends!" or "after them!" and following behind. the family left as quick as they arrived, obviously annoyed with our little welcome wagon, bullhorn boy :) i get it. he comes on strongly. but i dream of him being at least acknowledged by everyone he meets. and even accepted when it's appropriate.

3 and 1/2) can you think of a super positive interaction with other people, in dealing with your child, that left you smiling?
i want to share two, because these will both help you, i think!
*last summer we visited a church while out of town. we knew they didn't have a specific special needs ministry, but they encouraged us to worship there and include elijah in the sunday school activities and lesson. we offered some helpful tips and left our boy in that typical child setting. we do not have a church home here, because it's been stressful and hurtful with lack of safety, understanding and assistance. i was so nervous about the whole thing. i knew they didn't know what they were getting into and it would be a disaster. we went into the worship service. worshiped corporately through music and a sermon. not once did anyone come for me to rescue them. and i fought the urge to go check on them. the service ended, we scurried to retrieve elijah. and what do you know!? i'm a big dummy because they did know what to do and nothing was a disaster. they loved on elijah, included him in bible stories and played with him when he needed a break. they adjusted their normal for him. the weight lifted from us and we rejoiced at this beautiful success. church should be a place where our families are accepted absolutely. this church didn't need a fancy program in place to begin offering help. they just jumped in and blessed us. praise jesus.

*we took elijah to a movie theater, they offered a special "sensory friendly" showing. (the lights on a bit, sound quieter, and it's ok if you get up and walk around, dance, jump etc) for the first five minutes of the movie elijah was sitting in his seat, totally loving the movie. but then, he preferred to explore the theater. every chair in every row. this was our first attempt at a sensory friendly atmosphere and were not accustomed to allowing all his noise and activity. we were exhausted and thought he was too intense, even for a special situation. tears in my eyes, flustered and feeling defeated, we dragged elijah near the exit. a mom stood up and took my arm, pulling me close she said something like "are you leaving? please don't leave. you're fine. your son is fine. he's having fun. i want you to stay." she hugged me. 
well. more tears flowed, but they were tears of relief, washing away my frustration and concern. her words and actions demonstrated such grace and understanding to our family that day. i will never forget it. and i actually think of it during other frustrating or awkward times, remembering the goodness of the lord through that sweet mama.

4) what is helpful from me when i interact with your child?
just be yourself! interact as you would with your own child. learn what he loves and share it with him.

5) sometimes i don't know what to say. what are good questions to ask about your child?
you know what, if you're willing to listen to my responses, i love questions. learning about my son, about autism, has been one of my favorite (most exhausting) things about life so far. i want to share anything i know with everyone. just ask and listen.

6) what do i do when your child is acting out and i'm standing right there?
try to relax :) trust me to handle it the best way possible for that environment. give us space and grace.

7) how has the gospel intersected your experience with your special needs child?
i remember reading natalie's answer in a previous post in this series, and hollering YEAH, girl! me too! go read her answer!
i feel like i need the gospel every single day, more than i ever have before. i see my own desperate need for jesus more clearly, as i see my son's needs. compassion has grown in my heart. i treasure gifts like grace, forgiveness and the hope of eternity where we'll be free of this broken world. my child drives me to prayer and seeking the lord more earnestly. promises like jeremiah 31:25 i will refresh the weary soul, satisfy the faint - are more literal to me now. basically, my son is teaching me that god doesn't work on my scale. elijah is made in god's image. on purpose. for a purpose. elijah isn't "typical", but he's valuable.

8) what are some ways i can help you?
i think being my friend is helpful. i love to talk, laugh and learn just like you! another tangible way to help mamas like me is refreshment. my son doesn't sleep well, and he is extremely active. every waking breath. it's exhausting, day after day after day. you could come over whenever he's finally asleep so my husband and i could sneak out for a treat(we don't date much). or come over while my son is at school, do my dishes or sweep my floors or run errands, so i can actually rest while he's away. and i think these are helpful gifts for any mom of special needs children, not just autism :)

14 comments:

  1. Jami, thank you so much for this series. I have many friends with special needs children and have worked with many of them at different times at out church.
    my heart filled with both joy and sadness when I read Hannah's church story. I am the Early Childhood Pastor at our church and my husband is the Family & Children's Pastor. in the past 10 years we have had many families with special needs children attend or visit our church. our goal has always been, what does this child/family need from us. sometimes we have failed, but more times than not we have helped them. we aren't a mega church or even a very large church, just a slightly big church with a heart to serve others for Christ. and many many times we get calls or hear around town, "you guys have a special needs ministry at your church,"...no, no we do not, we try our hardest to meet the needs of each and every child & family that walks on our campus, and we search high and low for volunteers that are willing to give of their time {their precious Sunday Morning time} to minister one-on-one if need be to these children.
    If you have read this series and wanted to know how you can help these families, go to your church and ask, do we have any families with special needs kids that may need help so they can attend church...offer to sit with the child in class, in service, walk around campus with them, push them on the swings, read with them, bring your ipad and play some Bible apps with them, blow bubbles, play with playdough...YOU can make the difference for a family that so desperately needs the refreshing moments of sitting in a church service, worshiping God and learning His words without worrying about their child.

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    1. well, i love this!! yes! you, anyone, can make a difference. XO

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  2. I don't have a special needs child, but I'm sure loving this series. I'm blown away by these moms and these kids...all of you are so amazing and lovely and precious. thanks for sharing your struggles and your joys. its blessing me huge!

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    1. stephanie, thanks for "listening"! truly a joy to share with you. thanks for your encouraging words. you blessed ME huge. XO

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  3. Oh, I am sobbing over the movie theater lady! What a treasure! I hope I'm a movie theater lady to someone out there. Love you, Hannah!

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    1. kate, i sure love you! oh, how he loves us. XO

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  4. i'm so thankful for this series. it's such a blessing to learn more about these beautiful babes. it helps me be a better friend to my mom friends around me.

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    1. thanks for being a good friend to those around you! xo

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  5. Hannah, once again you bless me. That story of the lady in the theater had me in tears. How many times have we packed up the family and left a party, a church, an amusement park because one or both of our ASD boys was "too much". And I agree, they were made perfectly in His image. Allowing us all to see another aspect if the Father.

    I'm happy to say that our church family has adjusted children's ministry to accommodate all children and families. Our boys can participate in all activities and have special buddies who have been trained to help. Our 13 year old can even attend youth group. All the kids follow the leaders and mentors example and love on him, even when he's smelly and acting weird. He even was awarded "best dancer" for his unique styling sat the winter youth conference. I never dreamt I'd be able to leave him for a day at church. Their love and grace staggers me.
    I'm praying that God goes ahead of you, preparing a church family for yours and Elijah. Love you!

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    1. oh, betsi. so happy you have support through your church. it's huge, isn't it?! thanks for your prayers and steady encouragement. XO (we visited a church on sunday here in our new city...SOLID. and so excited to go back! can't wait to share more.)

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  6. i love you hannah and your heart and your family! thank you for sharing all of that with us! i hope to meet elijah one day!

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    1. sweetie wynne! thank you for reading, love you. (and totally need our kiddos to hang out!) XO

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  7. I loved this one the most! I so relate to so much of it. The theater story especially. T loves movie theaters and the best part of movies are the previews and the credits. But he doesn't really care about the actual movie. I spend the whole time telling him to stop talking, walking around, and singing. I always breath a huge sigh of relief when we have a theater all to ourselves.

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    1. thanks, kathryn! you're awesome. i hope you and your son can have lots of fun movie theater experiences together. and maybe try walking around and singing with him sometime :):)
      xo

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