Wednesday, February 20, 2013

Be an advocate

Nate and I have never known parenthood without the reality of special needs.  First it was pre-parenthood when I was pregnant with twins - special high-risk doctors appointments for a high risk pregnancy.  When Luke and Will were born, we learned all about the medical needs of babies born too early.  And since they were very young, we've dealt with the reality of regular doctors appointments, medications, therapies, seizures, nebulizers and everything in between.

So from day one (or pre-day one, really), we've had a lot on our minds.  It took a while for us to get our heads around our new and surprising reality.  Over time and with acceptance and love, we have learned look at the world differently than most parents of typically developing kids.  We go to Toys R Us at Christmas time and play with toys on the shelves as we think Will would.  We go out of our way to find playgrounds where all our kids can play together.  We make appointments for Botox shots.  We think about IEP meetings and goals months in advance, and special education and school placement and the safety of bus lifts and tie downs for wheelchairs.  We've just gotten to this reality where we think like advocates.  We want to make the world a better, more inclusive , and accepting place for our kids.

I learned this week, however, that as good as I have become at being an advocate for Will, I have not yet found my voice to be an advocate for other children with special needs.  But I assure you, I will be working to improve myself.

Matthew was off from school on Monday.  We spent the day running errands - signing Luke up for t-ball, getting Will his new braces, finding new shoes.  Matt was behaving well and starting to get hungry, so we stopped into our local Chik-Fil-A.  It was a cold day, and they have an indoor playground - though we've never been there before.  We decided to give it a shot.

As we ate our lunch, I noticed that there were a lot of big kids in the playground.  LOUD kids.  And while Matt can stand up for himself, I was hesitant to have him go inside and play.  We finished our lunch, and I tried to trick him into leaving.  No luck.  That playground had his name written all over it.

So we went inside.  I stayed like 2 feet from him as he warmed up to his environment.  Eventually he wasn't intimidated by the other playing (LOUD!) older kids, and I sat down... like 5 feet away.  I was still hesitant.  He's still my baby, despite his fearlessness and bruises like an MMA fighter.

Shortly after, a man came in with a boy over his shoulder.  The man was older, perhaps not the boy's dad, but definitely some type of family member or care giver.  He put the boy down.  The boy was about 6 or 7 years old.  And I noticed immediately that he had cerebral palsy.  He was standing on his own, but walking carefully on pointed toes with tense arms.  He had a smile on his face so much like Will's.  He was non-verbal, but clearly very happy about being at the playground.  I was excited to see how he played on the playground, and how he shared it with the man.

The boy made his way towards the stairs to the slide.  The man walked away.

WALKED AWAY.  Like to the other side of the playground.  He was not paying attention.  In my mind, the next few events happened in slow motion, but they likely happened in a matter of seconds.

The boy slowly and deliberately made his way up the first wide step.  It took a while, and he was thrilled when he made it to the base of the second step.  But he was exhausted from his efforts.  He laid down on the step, with a huge smile on his face.  His chest heaved with the effort of his climb.  He was very proud!

A couple of children carefully stepped past him.  He still smiled.  Some of the (LOUD!) kids said hello to him and smiled as they scooted past to go up the stairs.  I guess they weren't so bad after all.  The last kid to go past, though, wasn't as careful.  I stood up to help the boy (the man was still no where near us) just as he was kicked in the head.

I had a lump in my throat.  I knew it was an accident, and the walking boy was not acting maliciously.  But someone had to help.  My feet were heavy.  The boy cried.  God, he sounded like Will too.  I felt so sad.  The man must have heard the cry and finally started paying attention, walking across the room to pick up the crying boy.  And he just walked them out of the playground.  There was nothing more.  He had no clue what happened to that boy in his care.  Had he paid attention, been realistic and thoughtful about the situation, that little boy could have had a lot of fun with him... it didn't have to happen this way.

I was silent.  Now looking back, I know that I should have done something, said something.  I should have been an advocate.  I don't know that boy.  I may never see him again.  But I should have stood up for him, since he apparently didn't have anyone else to do it.

As much as the next parent of children with special needs, I want my kids to be accepted.  I want them to have friends, and to play and to laugh and to be able to go to the playground anywhere, including Chik-Fil-A!  But no where in my mind does it seem like a good idea to leave my semi-mobile, non-verbal child with special needs to fend for himself at a busy playground. 

As a parent or a grandparent or a friend - you have a choice.  You can be a pushover.  You can be an advocate.  You can be negligent.  You can be outspoken.  You can be quiet.  You can shake your head and do nothing.  You can stand up for what is right.

I challenge you to join me and stand up for what is right.  Be an advocate.


Barbara Lilly said...

That must have been an incredibly difficult situation. It can be easy to look back and see when we "should" have spoken up, but in the moment it can be so hard to tell. I know I have to be better at being an advocate as well.

Andrea said...

I very much enjoy reading your blog. You make a lot of excellent points in this post (and others). I'd like to share another viewpoint, though... A few months ago, I was at a church activity in a gym with my family. I have twin daughters about the same age as your twins, and one of them (Phia) is mostly non-verbal, blind, and in a wheelchair that she can propel herself (though not very well). She loves to wheel herself around in large areas but often bumps into things or people, so I usually hover an arms length away to ensure her safety as well as the safety of those around her. For some reason, on this day, for a time, I didn't hover (I observed from a distance). What happened was completely eye opening to me!! Numerous people knelt down to talk with Phia, pushed her chair for her, or moved her to a more clear location. These were mostly people who would otherwise have had nothing to do with her! Many of them didn't even really know her! They shared smiles, and it was great for them and for Phia. It was all because I wasn't hovering. Now, don't get me wrong -- I absolutely would have stayed close to my child in the playground situation you mention. However, I am slowly learning that some things I have previously thought of as responsible parenting of a child with special needs (always hovering) might not always be in her best interests. It also might be helpful for people in the community to occasionally have the opportunity to interact with and help my daughter and others like her.

Kylie Slavik said...

I appreciate this post quite a bit.
I believe strongly in advocating for those who cannot advocate for themselves, and am happy that you had the realizations that you had. It's very empowering to make choices based on our values and to speak out even when it's uncomfortable, and even when sometimes it feels like it has negative repercussions or consequences which has many times been my personal experience.

Using our voice to empower those that have less of an opportunity to speak for themselves is a great use of energy and time.

Thanks for sharing!

PS - really cool to see Marie Forleo's B School link on your blog! She totally rocks.