Friday, October 28, 2011

31 for 21: #28 What I Wish People Knew...Raw, Honest Truth

So, yesterday, the "assigned" 31 for 21 entry was "What is the one thing I wish people knew about Down Syndrome?"

I got distracted and forgot to check before I went scribbling yesterday...but...mine is a little maybe it's good people read me separated from those who actually followed the rules.

I wish people would realize that I'm just a normal parent.

There I said it!!!

I am not a freak that God decided to "bless" because "He knew I could handle it".  I'm a pretty regular parent.

About 80% of children with Downs are born to parents under 40 years of age.  That's a pretty high number.  We do not have "wisdom" from "the world" or our "long lives" to help us be brilliant parents.  We are actually trucking along side of our peers.

I HATE hearing the refrain, "Well, God knew I couldn't handle it!  You're so:"  strong, brave, smart, blah, blah, blah, awesome....whatever, go ahead and fill in the blank with some kind of stroking the ego complement....

Um.  Yeah, I've said on HERE before I had a temper and NO patience before I had Elise.  I am quirky and not a great planner.  I speak before I think.  I was verging on Spartan in emotions.  (I've mentioned on HERE before also, I'm an Aspie)  I don't respond well to emotions, I have a hard time figuring out what to say, or even how to read other people's.  I also had a REALLY hard time expressing emotions.  I don't like to be touched particularly.  And I hate to ask for HELP.

Can you see where I'm going here?  I am not a great candidate for a non-verbal, sensory spectrum, emotionally excessive, needy child.  AT ALL.

As a matter of fact, I am probably the antithesis of who would make a "good special needs parent".  You could even argue that I needed my kid to be the therapy for my own failures and issues.

Am I a pretty good parent?  I don't know.  I love my kids so much it hurts.  I pray for them.  I beg God to fill in the holes I KNOW I'm leaving in their needs.  I am quite sure that I am not  doing everything I probably should be.

Am I confident that God is growing me to meet needs I never thought I could?  ABSOLUTELY.  There is a great quote that floats about periodically, "God doesn't call the qualified, he qualifies the called."  I don't know who originated that quote, but I believe it is pretty sound.  I think it could be used in regards to parents with kids with special needs. 

My child with Downs is not a "sweet", "mild mannered", "loving" child.  She is loving.  She can be sweet.  She is far from mild-mannered.  I think a bloggy friend said it well:

"...People with Down syndrome are just that. They’re people. They’re not 'inspirations,' they’re not 'sweethearts,' they’re not 'little angels.' They can be some or all of those things, but so can you. Having an extra chromosome does not put you on the fast track to sainthood, nor does it strip you of your humanity. A person with Down syndrome is not their diagnosis.

They are individuals. They learn throughout their lives. They’re not 'adult children.' Adults with Down syndrome desire the same things typical adults do: independence, companionship, purpose in life. With appropriate supports, these things are more than possible for people with Down syndrome. They do not require paternalistic, pat-on-the-head treatment. They often require supports, yes, but they also require – and are deserving of – our respect as equals."

And guess what?  A parent of a child with special needs is the same.  We are just parents.  We are not saints.  We do not have super-powers.  We were not trained somehow to be prepared to be "The Uber-parents".  Many of us have typical children too, and have the same and even more pronounced struggles with our other children. (Read, my 5 year old never stops talking.  EVER.  Makes me nuts!)  We can be tired.  We can be annoyed.  We can tell you that we hate our child's disability.  We can tell you that we hate all the "extra" that our life now holds because of our child's disability.  Because it's true.  Other parents feel it some days, too.  With or without special needs. 

I HATE it when my friends "don't feel like they should/could complain"  because it's not "as bad as you have it".  Tired is tired.  Weary is weary.  Sick-of-it is sick-of-it.  The only thing that will hack me off, is if you are not fighting for your kid.  Their success or their happiness.  That is the ONLY thing I don't want to hear.  Because if you won't do it, who will?  Call in the troops.  Call in ME to have your back.  I will NEVER have too much on my plate to the point that I cannot or will not support you, My Friend.  Ever.

So, in conclusion.  If I was going to argue with you that my child with special needs is just like your kid, deep down?  I can argue the same for myself.  I am exactly like you.  I have the same fears.  I feel unqualified.  I feel in over my head.  I worry if I am "doing it right".  I worry if I am being a good friend.  I worry if I am listening to YOU!  So talk to me.  Let me talk to you.  I feel what you do.  Honest.


  1. awesome post! can I just copy and paste? :)

  2. This is one of my favorite posts. Well said!

  3. Well said! I'm pretty new to this journey, but I've already started to rebel at the "you must be so..." comments. Mind if I link from my blog?

  4. Love, love, love this post! Shout out to Lynette for directing me here!