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.

Insperity Sports Complex

Our family loves sports, particularly baseball.  My husband always watches baseball on tv with the boys. Jacob loves to imitate the baseball players.  He winds up with a high knee to pretend to pitch like the pros and, of course, he watches them go out and grab the dirt and lick their fingers to get a grip of the ball. So last season to start the first game for the miracle league he gets all his gear on and runs out to the pitchers mound and grabs a huge chunk of dirt and licked it right up.  He quickly found out it wasn’t as cool as he thought it was gonna be.

In all seriousness though, the Miracle League has meant a lot to our family.  For my husband, it has allowed him the opportunity to see my son participate in a sport and enjoy doing something that couldn’t do otherwise.  It’s a good challenge for Jacob.  But the best thing is that they get to bond over something they both love. It sort of brings their worlds together.  As a coach, he would always say that no matter how bad  his day was…just getting to see the pure joy of those kids' faces out there playing and running the bases changed his perspective and made him appreciate the little things. It’s impossible to have a bad day after watching the kids light up on the field. You get to see families encouraging each other and meeting other families in similar life circumstances. 

My daughter gets a chance to be a buddy and help kids out on the field and I've seen how fulfilling its been to her and it increases her compassion towards children with special needs.  Tyler loves watching his brother enjoy the sport he plays and having something in common with him.

And I love that we can bring Jacob out to play baseball, but if he feels like rolling in the dirt, swinging the bat, or swinging from the fences, there’s no judgement. Its just a safe place to have fun and play sports where kids with all different abilities are accepted and included.

Most importantly, we are thankful that the Miracle League sports offers Jacob the unique opportunity to learn what it means to be on a team, to share, to wait his turn, to learn the rules of sport and meet his own independent milestones. 

Our family is truly thankful for the opportunity to have somewhere Jacob and other kids with disabilities can go and enjoys sports.

The Lake Houston YMCA has teamed up with Humble ISD and community partners like The Houston Astros, Insperity, The Houston Rockets, Texas Children's Hospital, and Halliburton (to name a few) plus many families to build a fully adaptive sports complex and playground in Atascocita.  This is such a special and unique way for the community to come together to build a facility for individuals with special needs and show their support and acceptance. 

Tonight our family got to speak at the grand opening of the new Kingwood Insperity building for a fundraiser for the sports complex and we couldn't be more thankful.  The Miracle League has truly been a blessing to our family and we know that this sports complex will be so amazing for so many for years to come. Please pray they raise all the funding needed.