Friday, February 28, 2014

It's Not All Roses but It's Not All Thorns Either

With all the negative stereotypes around about persons with special needs and in particular Down syndrome I was very surprised when most of the negative responses to some of my posts have been from parents who have a child with Down syndrome.  They seem to think that only posting positive aspects of what my daughter does gives a false impression about what life with DS is really like.  It also seems to make them feel bad if their child is not able to do what my daughter can do.

Let me assure you that it was never my intent to make another parent feel bad.  What my intent was, and continues to be, is to encourage parents to try new things and ways of teaching their child and to show that people with Down syndrome can, and do, great things.  I am aware that not all children with DS will be able to do what my daughter does but I am also aware that my daughter will not be able to do everything that other kids with or without DS can do.  It is not about who is better, or who can do more, its about challenging them to try!

I strive to find that balance each and every day.  I wrote an article for the Schoolhouse Review Crew website titled Balancing Goals With Outcomes.  It is difficult to make sure your goals are both attainable and challenging enough for a child with special needs.  I do realize that all of our dreams and desires for her may not come true, but that doesn't mean we can't try.

There is no doubt about the fact that parenting a child who has special needs is a hard job.  It is way more then most parents bargained for and it is not what one generally wants, seeks, or asks for out of life.  When we are expecting a child we pray that they are "healthy" and well.  Sometimes that prayer is not answered in accordance to our own personal wishes and desires and parents are often left asking the question of why.  I have asked this question myself.

While there are bad days that make me ponder these things, I am also a person of faith.  In the end I realize that I don't need all my questions answered.  I believe God in His sovereignty knows best.  I have learned over the course of the years that sometimes what we consider bad, can actually be good.  At least it can work toward our good.  Without these constant trials we would never grow in our faith, in our maturity or in our character.

So, is everything perfect in our home?  Of course not!  We are human and Gess does have special needs.  She also happens to be going through puberty right now which is a trying stage for any pre-teen girl.  When you add special needs into the mix you get some great challenges.  However, it is simply not in my character to focus on those issues other than to try to figure out how to solve them.

Being a person of faith generally drives me to become a person of action. When I come across a challenge or some sort of road block, I do not give in or give up.  My first instinct is to figure out how to get around it.  It was researching some of those very stumbling blocks that made me start this blog in the first place.  The answers to those questions were sometimes difficult for me to find, so when I found them I thought it would be nice to share them with everyone else.

That is the only reason I blog.  To make it easier for you to find resources.  If you want to find helps and try new things with your child, please read what we have done.  We know they may not work for your child, as everything we have tried has not worked for us.  If you have ideas and solutions I have not tried, please share them.  I am always looking for new things to try.  I love teaching but I also love learning.

What you won't find here is me sharing our failures or complaining about how I wish Gess could do better or more.  I am not going to compare her to others.  I started off that way and all it brought was discouragement and despair.  Instead I am going to allow Gess to be Gess.  I will accept what she can't do, but only once she has proven that it is because she can't, not because we haven't tried.  There are many things she can't do that I see other kids with DS doing all the time.  She can't ride a bike or swim very well and we have a boy in our support group who excels at both and he is way younger than she is.  I am excited for him, not disappointed in Gess! 

There is enough negativity on the web.  I can't tell you how many people on my Facebook page are constantly complaining about one thing or another, and most of these are people who don't face the challenges of raising a child with special needs.  Yes, we have our bad days and we have our disappointing moments, but I share those moments with God, not man.  I feel it is my job to encourage and uplift others.  I don't feel that I need to share the negative aspects of my journey to do that.  When I do, you will hear about it.  In the mean time I hope you will join us in celebrating our accomplishments however little or small those may be!

Raising a child with special needs is not all roses, but you know what?  It's not all thorns either!  I am here to share the blossom of the flower, not the thorns on the stem.

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