Wednesday, June 13, 2012


I'm the mother of a little girl with special needs.  She is my biological daughter.

There are many lessons to be gained by parenting children with special needs.  Unlike some who have chosen to adopt children with special needs, my first experiences with special needs were not necessarily chosen.  I did not know my daughter would have challenges.  We simply decided to have a child.  That choice, it can be argued, is a choice on its own merits.  Choosing to have a child means that the child could have issues.  Had we chosen to remain child free, we wouldn't have a daughter with special needs. 

But that's not reality.  The reality is, the vast majority of children do not have special needs.  They are "special" because they are different - a deviation from the "norm".  The reason it is talked about is because it is not what parents expect.  Most parents expect a child who will grow just like other children they know.  That doesn't always happen.

It's different in adoption, because many families are consciously choosing to parent children with special needs.  Some of those parents, sadly, are not prepared for the realities of special needs children.  Most, gratefully, are.  Parent expectations can be a tricky maze to negotiate. 

We expected our daughter to grow as any typical child would, and she did not.  That is not a criticism of my daughter.  It is simply the truth.  Her path through childhood has not been the path that typical children navigate.  The way we think, the way our lives are constructed, the way we manage situations are not the ways that parents of typical children generally operate.

Parenting our amazing little girl requires a bit of rewriting.

The "script" we "rehearsed" in our minds about her before she was born and when she was very small have to be rewritten - edited, revised, deleted, and added to.  Sometimes, there are tears during the rewrites, as we erase some things to add others.  Sometimes, there is pure joy as we edit our new script that is constantly subjected to revision.  There are times when we can add several paragraphs to our script with excitement over things our daughter can do - challenges that she has surpassed.  There are other times when we must quietly delete many lines, sad to know that our child can't reach these goals right now, and may never. 

Life must be repackaged - packaged into a life that is more in line with our realities; realities that include triumph and great sadness, losses and gains. 

Our daughter is a miracle and she is amazing.  She surprises us with her abilities as well as with her challenges.  Instead of falling into the bad habit of envisioning her future (as so many parents do) we must keep our minds sharp on the here-and-now and focus on what we may hope for her future as we help her develop the skills to reach those goals.  Sometimes, this brings us great sadness and loss.  We mourn for what she cannot do now.  Occasionally, we mourn the loss we feel as her parents.  We will likely never be anything other than parents to special needs children.  We will always wear that label.  Our children will require accommodation, advocacy, and hard work.  Those who have not parented in this way have absolutely no idea the resilency and skill required of parents who have children with special needs. 

Parenting is a tough job; being a parent to a child with special needs is even tougher.  (There's a reason why more marriages fail when one or more of the children in the family has special needs).  Had we not had our experiences with our daughter, I don't think we would be prepared at all to parent another child with special needs.  Perhaps that's not true and I underestimate myself...but I think I know myself pretty well and I'm pretty confident in that answer.  Without our experience - experience that we continue to gather and execute - I don't think I would feel prepared to parent our future son. 

In truth, our life is one big rewrite.  We can control some of the quality of that rewrite.  The rest lies in how we read it.

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