Living with Special Needs

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1 Thessalonians 5:16-18
Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you.

I don’t usually post this sort of thing publicly for various reasons but today I’m going to give you a glimpse into the world of one special needs family. It is lonely. Maybe more so when it’s an autism spectrum disorder (ASD). Maybe not, but no ASD child is the same and from the families I know with an ASD child, our experiences vary quite widely so even “shared experiences” aren’t really shared. It’s very lonely when you’re the only parent pulled out of Sunday school almost every week for your son who is almost ten. It’s lonely when you see friends and their kids doing fun things together and you either weren’t invited because of the ASD child or you chose not to attend because it wouldn’t be a good environment for the ASD child. It’s lonely when you can only find a few babysitters that can and will work with your child. And it’s lonely when you see your ASD child getting looks of disgust from other kids and/or parents. Those looks might as well be aimed straight at me because I feel them more intensely than if the look actually had been directed at me.

There are a few very precious families in our life who have not only accepted our special needs son, but have enjoyed him and his eccentricities. For those I am incredibly thankful! Besides being Christ to us and filling the lonely places, at times I need help seeing beyond all the battles to the fun and joy found in my son and these families help immensely. I’m also thankful that our son has come so incredibly far with his anger, self-control, and compassion towards others. I’m thankful that The Lord uses my sons to push me into seeking Him through prayer and His Word and to make me more like Himself. Being obsessive about something is pretty typical for ASD kids and I’m thankful that my son’s primary obsessions are reading and Legos instead of some violent video game. I’m thankful that the Father has granted me incredible grace to school both boys at home and to learn some therapy techniques to work with him at home. I’m thankful that he is able to communicate well and is an amazing artist.

Though I try to give thanks in the storm, it’s very hard not to wish to be out of the storm every time the waves come crashing in, especially because I know this storm probably won’t end for many years, if at all this side of heaven. But there are many calm moments and victories and I’m thankful for those too. In fact, on days like today, in order to not drown in despair or loneliness, I remind myself of moments like these:
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IMG_1379.JPG And then it’s a little easier to smile instead of cry! 🙂

All that said, I sometimes wonder if my son feels the loneliness too. Hopefully we surround him with enough love and enough accepting friends that he does not. I pray that he doesn’t feel the loneliness but is completely secure in our love, yet I know that I fail him all the time.

All that and it’s really just a glimpse. If you know someone and you even think they might have a special needs child, please pray for them, surround them with great love, and look beyond the oddities to discover the diamond in the rough. And please, please teach your “normal” children to do the same.

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2 thoughts on “Living with Special Needs

  1. Kimm, I suppose I’ve been living under a rock, but didn’t realize your family deals with such serious issues. I met your sweet son & seriously would’ve never known. Anyway, loved your post!! Glad we’re “real” friends now. 😉 p.s…. They make u put in your blog to comment, but please don’t judge!! Hahaha

  2. Dawn, that is high praise! No, you haven’t been living under a rock. I’ve always kept it mostly under wraps. For one thing, we’ve never told him he’s autistic because we don’t want to give him an excuse to throw fits, not communicate with words, etc. Another reason is that our case is so mild compared to others I know that I often feel guilty ever being upset or frustrated with our situation. Yet it’s because his is so mild that I am at time frustrated. Unless you spend lots of time with him or time in specific circumstances, you probably wouldn’t know. Because of that, there are many who have no patience for him and instead seem to think we ought to do a better job parenting. We’ve even had people talk to is about needing to teach him better in certain social areas. Our response is usually to kindly let them know that we are working on it, but other things take greater priority sometimes — like taking care of his health and proper public bathroom behaviors!
    And for what it’s worth, I love your blog 🙂

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