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Monday, March 21, 2011

That Public Service Announcement

Here it is... The subject every mother of a child with special needs broaches at some point.  I haven't yet - because I know it is discussed to death in my WHS circle of friends. However, I have many circles of friends.  And ... the majority of people I know aren't associated with Wolf Hirschhorn Syndrome, so I decided it was time to actually weigh in on the topic.  Here's my PSA.

Do you know what he is? Retarded.  It is true.

Webster defines retarded as: slow or limited in intellectual or emotional development or academic progress. 

Alexander found his feet this weekend. He smiled and laughed in delight as he realized that his fingers were touching his feet.  You could see the wheels of his mind turning as he moved his finger around and felt the motion on his feet.  And I laughed in delight as he did this.  I thought, "He found his feet!"  I posted on facebook, "Alexander has found his feet!"  I was proud of this accomplishment and I can see the pride in his face.  This accomplishment .... this newborn accomplishment.  You see - most children find their feet in the first few weeks/months of life.  Alexander will be 1 year old in a month.  This is retarded development. 

We have our evaluation for Early Intervention next week.  We will sit down as a team - Raymond, myself, his service coordinator, his OT, and his PT.  I will probably offer his nurse (you know that he is watched by a nurse everyday.. right?) a chance to sit in on this meeting.  We are going to discuss his progress. We are going to discuss his goals.  I will probably blog about it afterwards. The thing is... I've been to IEP meetings.  I know what is going to be discussed.  I know I need to develop thick skin because when I see Alexander I see:

*He is really getting strong in his ab muscles.  He uses less and less support to sit up.
*He has started this game where he flings himself back onto a pillow and then with limited assistance does a sit up to play the game again.
*He has started to bare weight on his legs and I'm excited for him to begin standing.
*He is really good at tracking objects
*He responds to my voice
*He is eating baby food / solids consistently
*He is still working at sucking and sometimes we have really good days
*He is gaining weight
*He smiles
*He talks (coos and yaps)
*He doesn't like a poopy butt and lets me know it
*He has started to roll over a little more from back to belly
*He has started to grasp his feet
*He does much better with holding himself up on his arms
*He is close to rolling over from belly to back

I know what that paper is going to say:
*Alexander does not sit unassisted
*Alexander does not stand
*Alexander does not take 100% oral feeds
*Alexander does not roll over from belly to back
*Alexander does not grasp toys or his feet 100%
*Alexander does not push himself up on his arms 100% of the time

Alexander is mentally and physically retarded.  In fact - for those of you who don't know.... Early Intervention is a service covered by the county's MHMR (Mental Health and Mental Retardation) office. 

So when you say this word it literally takes my breath away.  Because people don't say it and think of this:

A boy with potential who is just going a little slower than the average Joe.  My baby boy.  My precious baby boy.

They say it in reference to something they hate.  They say it in reference to something that drives them crazy.  They say it as a swear word. It is dirty. There is nothing positive about the word. Nothing.

There are all sorts of public service announcements about ending the use of the word.  Today I was trying to help a student with her persuasive speech (On ending the use of this word!) - and we were looking for videos to accompany her speech.  I pulled up Youtube and just searched the phrase "I am not retarded" without the words PSA.  You know what what you get?  You get a bunch of jerks making fun of people. I found a video with a girl giving the middle finger and a bunch of others with similar vulgarity.  What does this say that a search for that word brings up videos that also contain the most vulgar of swear words?  Is this how you view my son? Is this what you want to teach your children? On average - this word is used on Facebook over 6,000 times a day. Do you think those references are ever positive? beautiful? precious?

Please stop.  It is a knife in my chest. Because - clinically... it is one of the words used to define my child.  It is a necessity I must put on the forms to get him services.  It will come up at meetings.  I can't stop using it to describe Alexander - even though I wish desperately I could use some other term.  When we sit in that Early Intervention meeting, doctor's office meetings, and school meetings - this is the "official" term that will be tossed around to make sure Alexander qualifies for everything possible to help him reach his full potential. 

If it is impossible for the world to stop using that term to describe my child......
Than can you please stop using it to describe things vulgar? stupid? hurtful?

PSA done.  To all my friends.  You've been warned.  Next time we are together and I hear the word ... I'll be sure to remind you to your face that I can't stand it.  Please don't be embarrassed.  I'm just trying to save you from further embarrassing yourself.


At March 21, 2011 at 6:38 PM , Blogger Kisses4Kaylee said...

Love it~ I think we have all blogged about this same topic at one time or another. The sad fact is that until people are personally affected by its use, they will have a hard time dropping it from their common just doesn't relate on an internal level. However, I think that you have redefined it for everyone. Just look at Alexander-- see what he is doing-- look at that precious face (can those cheeks BE any more precious??)-- and you just know that despite the fact that the word may be used in clinical terms to describe his delays, it most certainly does not define him! xo

At March 21, 2011 at 8:11 PM , Blogger Awn said...

Kristen, you are totally my hero. Growing up with a brother with hearing loss lent my developmental years to be fraught with words like "retarded" and not in the clinical sense. I shudder when I hear people say this in every day conversation...and not in the office. Thank you for saying what some mom's never have the courage to say. All three of your beautiful funny amazing children are lucky to have you for a momma.

At March 27, 2011 at 10:55 PM , Blogger MaryBeth said...

Hello, I came across your blog from a friend of mines facebook page. I am a student majoring in early childhood education. I was wondering if I could have your permission to share this blog entry with some of my teachers/classmates. It is beautifully worded and really conveys a message that hits home with me as an early childhood educator. Thank you!

At March 28, 2011 at 6:28 AM , Blogger Kristen said...

MaryBeth - I'm very thankful you would like to share this post with your class. This is probably the post closest to my heart. My only request is that you do not use any of the pictures from this blog outside your class. Other than that - please feel free to share!

At August 11, 2011 at 6:04 PM , Blogger Not a Perfect Mom said...

yes! that was said wonderfully...
and Alexander? is beautiful..
and really? us moms know way more than the EI teams...


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