Friday, November 25, 2011

Beautiful, Messy, Included

I was invited to share a little about my family and what inclusion has meant to us to some of the parents of Claire's classmates.  I know, super exciting!!  So here is what I have so far, what do you think?

First off, I thought I would tell you about our family so you can get a better picture of who Claire is.  My husband and I received Claire into our home through the foster care system about five years ago.  She was our first foster child and we did not have any other children.  Claire has Down Syndrome, which means she has an extra pesky chromosome tripping her up in every cell of her entire body. Down Syndrome has a very large spectrum and we are frequently asked "is she high functioning?" There are so many factors and no two children with Down Syndrome are the same. Claire tries very hard and does well.  We are so proud of all that she has overcome.  Just learning to eat and breathe, things we take for granted, are milestones for Claire.

After two years of foster care we were able to adopt Claire; shortly after, we had a baby girl, Makenna, who is now almost three and Claire's closest companion.  We also have another bio child, Alice, who is nearly one. 

Second, what is inclusion? Well, simply put, it's students with special needs spending most or all of their time with non-disabled students. Maybe a story is the best way to explain. 

Claire jumps off the bus and tells me she ate play dough today.  Sounds funny, but I am overjoyed that 1.she said "ate play dough today" and 2. She was at school today, sitting at a table with other students playing.  My heart for her is just that, messy, imperfect, included.

Truth, inclusion probably won't bring her up to grade level but being included makes her a part of so much more; a class, a community, friendship, a positive self esteem.  She feels valued, that is what we strive for. More then that, Clarie affects others in a very important way.

One of the things we considered while adopting a child with special needs was how this would affect our other children.  Makenna (Claire's little sister) is an example of so many positive benefits; reduced fear of people who are different, increased patience, improved social emotional growth, improved personal conduct and self esteem.  Makenna could tell you how she loves her sister.  Down Syndrome means nothing to her.  She has learned how to interact with Claire in a way that works for them.  Really, isn't that what we all have to do when we grow up.  We are constantly trying to figure out how to be in relationships with people who are different than us.  Makenna gets to learn how at two years old.  Adopting a child with special needs is intimidating but it was the right choice for us.  Claire, Makenna and Alice are all growing to be amazing people because of their shared experiences.  

There is nothing to fear.  I think some of us don't reason it out and live under the incorrect conclusion that if our children are exposed to people who are different it will be contagious.   I want to say thank you to every parent who has simply allowed their child to play with mine.  Really, your child is my child's greatest teacher.  I know it is not always easy.  My heart breaks every time I hear that a child doesn't want to play with Claire because of her sometimes inappropriate social skills but when a parent or teacher steps in and teaches our children how to be friends I am truly touched.  

We were at a store the other day when Claire walked up to another child; arms outstretched in the universal sign for "hug me." The little girl just stared back at her.  "Hug?"  Claire said.  With no reply from the little girl Claire walked away to play with her sister.  Wow, pinch me, I thought.  She learned!  Claire is a hugger through and through and she struggles with giving people their space.  But there, that time she did it and I know it's because of all the wonderful practice she gets at school. 

Being able to attend this ECAP was a huge accomplishment for Claire.  We are grateful to God for providing Claire the opportunity to learn with her typically developing peers for the second year now.  She has such an amazing team here.  It seems obvious but being with peers is actually a pretty big deal.  Navigating education for a child with special needs is tough.   It's a mix of too much and not enough at once; always riding the line between more therapies and just being a kid.  There is always something to accomplish (OT, PT, and speech goals, books to read, specialists advice to impalement...).  This is such a wonderful balance for her right now. 

There are always so many questions when we look forward.  Will children accept her enough for integration to continue to be a positive experience?  Will the curriculum be so far over her head that she losses her academic education in a classroom? If she does go to Special Ed, will the children there have extreme behaviors that will rub off so much that she isn't appropriate in other settings?  I do not know the answers.  Each child is so different.  We will take it one year at a time.  We are constantly redefining education for Claire and at some point she will probably have an opinion too.  I can't wait to see who she is growing up to be.  

We are raising her to be a part of society.  We want her to be able to interact in the world.  To have meaningful relationships and a positive affect on her community.  Like any parent, we want her to graduate with people she knows, go to football games, spirit week...  With that in mind it seems imperative that she does stay in relationship with her peers.  Inclusion isn't an amount of hours in a class room.  Being included means being a part of a community, accepted for who you are.  It is knowing your best friends favorite color, going to birthday parties, and hopscotch on the play ground.  Yes, Claire is learning how to interact appropriately when she plays with a friend and that is amazing but other children are learning an equally valuable lesson along the way, compassion. Inclusion benefits everyone because everyone plays an important role.    

 Claire this Summer playing with Makenna and our friend Silas.

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