Wednesday, April 26, 2017

An Invisible Disability

The other day, while out in public, Jacob decided he wanted to hang out without his headphones on. I thought to myself that it was great that he was trying to cope with the sounds.  But after a few minutes he started moaning and making his usual "unusual" noises and hand gestures and people started looking.  It made me a little self-conscious and I realized that his headphones often indicate to people that he is different.  Different is ok and people are usually understanding when they know that he is different.  But then I started thinking about when he is a teen and making noises and flapping...what if he is totally done with his headphones by then?  When people don't know he has a disability they often just stare at him like he is an alien.  It's such a shame.

I was recently in a situation where I got to see some typical boys and girls interact with a boy who has obvious signs of high functioning autism.  I saw the way they ignored him, the way he was left out of the group, and the way they laughed at his unusual manner.  It absolutely broke my heart.

I wonder how we, as parents, can help this situation?  Will it always be so awful and lonely for kids with these invisible disabilities?

I think the situation just stressed to me the importance of embracing who God created my children to be.  If our kids have autism or any other invisible disability, it can be tempting to hide it.  For a while that works well, right?  You teach them to cope, to hide, to act "normal".  But after a while, people discover that they are different.  How do we then go on and tell them their differences are ok after making them hide it for so long?  I am not saying to stop encouraging and teaching them to be appropriate, courteous, and kind, but the fact is....autism is a social disability.  It affects the way individuals engage with people.  We need to teach our kids that their differences make them unique and they can embrace those differences for the glory of God.  How can their strengths be used to honor God?  My son is a super memorizer.  I hope we can encourage him to use those skills for scripture memorization, perhaps. 

Also, it's important for us to not back away from being open about disabilities.  Sometimes in our community, kids who presume our children are typical (just acting odd) can be flat out mean.  When I think about this, I don't even blame them sometimes.  Picture a kid with high functioning autism following a classmate around very close and talking to them about their hair over and over (true story).  That is odd behavior that would naturally make a peer scared or uncomfortable.  However, if that peer knew that they had autism maybe they would have compassion and be more understanding. 

I was so happy to see the new clip of the Sesame Street character who has autism.  In the clip, they announced that she loves when people know that she has autism.  I am so happy that they are encouraging people to not only disclose their diagnosis with others, but to be happy to share it because that is just a small part of who God created them to be.

I know as Jacob grows, if he becomes high functioning, it will be tempting to pretend things are "normal", especially around peers.  But as I have read and seen time and time again, the truth comes out in sad and lonely ways.  I am praying for God to give us wisdom in how we handle this and my hope is that we can help Jacob to see that having autism is ok and, more importantly, it doesn't define him.  There is so much more to Jacob than autism.  He is silly, smart, the master problem solver, and such an amazing kid.  I hope he can embrace all those things and never feel like he has something to hide.  I also hope and pray that parents of typical kids teach their children to be kind to kids that act unusual.  If you aren't having those conversations, your kids will not automatically know how to treat them...especially if their disability is invisible.  Like any special needs parent, my prayer is for my child to be treated with kindness.

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