Monday, August 11, 2014

When your special needs child is about to start kindergarten.....

I remember so well the day we were told that our middle daughter had been born with Down Syndrome.  There was so much shock and so much fear.  And in those first moments after being given the diagnosis I remember staring down at this baby with so many questions about what her future would be like.

From the very first moments of Ashlyn's diagnosis, some of my very first thoughts were on what it would be like when it was time for her to go to school.  All I had ever known was what school had been like for me and what I was assuming it was going to be like for our oldest daughter, Kyla. I was trying to peer into the future and imagine a life with a child who has a disability.    

In those immediate days following Ashlyn's birth and diagnosis, we were staying in the NICU with her and word was getting out around the hospital that a baby had been born with Down Syndrome.  One afternoon, a young nurse from another floor stopped by to introduce herself to us.  She told us that she wanted to meet us because her younger brother had Down Syndrome.  I could tell she really loved her brother and was telling us about him and his life.  She made mention of the fact that when he was in the 5th grade, he was really at a kindergarten level.  I am not sure why at that time she chose to share that with me, because my heart could barely stand to hear a reality like that in the very early days of Ashlyn's life when even saying the words "special education" felt like a foreign language to me.  I know this young nurse meant no harm to me.  For her, this was her brother, she loved him and it didn't make a difference to her that his education was different or that he learned slower.  All I know is that when she left the room I fell into a heap of tears in my husband's arms.  How could we do it?  How would we ever be able to be okay with a child who didn't learn like everyone else?  These were the questions swarming my mind. 

We brought Ashlyn home from the hospital, got deep into the newborn days and life just started to keep going.  During those days, people reached out to me.  And I remember people telling me, who had once themselves received a life changing diagnosis, that the pain and grieving I was in at that time wouldn't always be that intense.  That it would let up.  And that along the journey of Ashlyn's life instead of it being an overwhelming sense of grief, it would turn to lots of joy with moments of grieving along the way.  How true I have found this to be. 

Our life with Ashlyn is such joy with moments of grieving from time to time.  Moments where you notice a child her age that is doing things she is far from doing.  Moments where you are trying to help her with something and you see her little almond eyes looking up at you and you can tell she is so lost.  And moments like kindergarten starting.  And really what I am finding this time of starting school to be is grieving and healing all at once.

First of all, anytime a mama sends her baby to kindergarten I think there is grieving.  For this mama anyway.  But, throw in a diagnosis that at its core is a cognitive disability and starting school can throw some fears and sadness at you.  My heart felt tinges of sadness when we went shopping for school supplies and I knew many of the things we were buying Ashlyn really didn't know how to use.  Or the moment I walked into her school last week to meet the person who had been hired to be her full time aide and I walked into her classroom and it hit me how it now stands out that my child is "different."  There is a vulnerable feeling to these know we are about to send this precious child into a world where her differences will be seen.  Yes, my heart feels moments of sadness at these times.

But along with those feelings are feelings of such healing.  Because I remember holding a baby in a hospital room, crying so many tears over her and fearing her future, our future, wouldn't be happy.  It is more than happy, it is joyful.  And we are more than okay, we are so good.  We are so good because God is so good.  And when you remember those moments of not knowing how you could do this and then you see that you are.....that is healing. 

Ashlyn will go get on a bus on Wednesday morning and go to the same elementary school her big sister goes to and she will sit in a kindergarten room full of other students.  She will have a full time aide with her and for some parts of the day she will go to the resource room.  She is at a loving school full of loving people who I know will care for her and help her grow.  We know that Ashlyn's path will be different and her education will be a big part of those differences.  But this week we start it and we couldn't be happier to be the ones to walk this journey as her parents.

This past Sunday at church, I was sharing with those in my discipleship class and I said that Ashlyn was starting school on Wednesday, could they please pray for her?  And the teacher of our class and our friend prayed for Ashlyn and he said, "God, we know that Ashlyn is going to be a world changer.  When she goes to school, may those around her not so much see Down Syndrome, but see the love she has for others."  Yes, that.  World changer.  That is what we pray for each of our daughters and we speak this over them.  We talk openly with Kyla about the way she can be a world changer for God's kingdom in the scope of second grade.  Because if you believe in the second grade you can be a world changer through the words you say and the actions you take, then someday when you are a grown adult you will remember that living in a way that makes God's kingdom visible, that changes the world.  And it hit me, Ashlyn is a world changer....starting with kindergarten.  Her educational path may be different, but she has so much love for those around her.  So much empathy for the feelings of those around her.  Who knows what child in her kindergarten class may need that this year?  That can change the world.

Here we are.....from the hospital room to the kindergarten room.  And we are more than okay.  And God is more than faithful and good.  Get ready, kindergarten, there is a world changer coming your way.

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