Parenting Children with Special Needs – One Mom’s Story

Before I had children I thought I knew a lot about parenthood. I was an aunt 4 times over, I babysat all through my high school and college years, and once I became pregnant I read every book on babies and parenting I could get my hands around.

I researched developmental stages and the benefit of vaccinations and breastfeeding, the concepts of praise vs. punishment, and I learned that sibling rivalry is to be expected and for the most part its best for siblings to work out their disagreements themselves.  I was pretty sure I had this whole parenting gig down pat long before I had any children to actually parent.

In 2003 and 2005 I was blessed with two sons. I was certain I was going to be mother of the year and my children would grow up to get married, have children of their own and become excellent parents thanks to my great example.

Then my boys were diagnosed with autism.

Needless to say parenthood through me a curve ball of mammoth proportions.

When the doctors tell you that your children have autism you realize that everything you thought you knew about parenting is wrong.  To be clear, I never thought my boys were “wrong”.  It was me and my pipe dreams of parenting perfection that was in error.

Suddenly I had to throw out the majority of the parenting information I had gathered and replace it with new information about IEPs, therapy schedules, PECS, and assisted communication.

I also had to come to terms with the likelihood that my boys would not grow up to graduate from high school, attend college, meet a nice girl and get married, and someday have children of their own.

I needed to accept the very real possibility that they may live with me for the rest of my life.  I made myself ask the hard questions about what will happen to my boys once I am gone.  Who will care for them?  Where will they live?  Who will be sure they are safe and happy?  And similarly, who will pay for it all?

Today my boys are 8 and 6.  They are both in special classrooms specifically developed for children with autism spectrum disorders.  Currently they are not ready to be transitioned into an inclusive classroom with their typically developing peers but each year we reevaluate and make the necessary changes to their IEP goals in hopes of making that happen.  Sam is mostly verbal and enjoys talking about his favorite things, namely computers and music.  Noah is functionally non-verbal but does have a handful of words and scripts he uses to request items he needs or wants.

Parenting children with autism has taught me to take each day as it comes.  This does not mean I don’t sometimes worry about where we will be 20 years from  now.  It means that I treasure where my children are right now.  Because I know that right now is the only time period I can control.

I have learned that each developmental milestone my boys reach is a celebration.  When a regression happens I accept it and take steps to get them back on track.  Most of all I embrace my boys for who they are, just as they are.  Their education, speech and occupational therapies, and various supports are not about changing who they are but rather about enhancing the men they will become.

I realize now that my parenting is not so very different from that of every other parent.  We all want what is best for our children.  We will go to great lengths to make that happen and in the end what we want most for our kids is happiness and comfort with who they are in the world.

 

Sunday Stilwell is the frazzled lady behind the banshee mask who can be found on her blog, Adventures in Extreme Parenthood, where she writes about raising two boys on the severe end of the autism spectrum while living to laugh and blog about it.

Sunday is one of the Reading Kingdom’s Summer Activity Guides. Be sure to check out the Reading Kingdom blog every Wednesday for posts from our Summer Activity Guides who will blog about parenting, and fun things to do with your children throughout the whole summer.