50 Shades of Hello!

SPEAK!  I will respond... 

      When you are out and about and see a person with a disability do you assume that because they look a little different, they use a wheelchair, they are non-verbal or are blind, they are not worth the effort of a simple "hey"?  Do you stare? Does your children stare?  Do you tell them that it is okay to speak to that person?  Do you speak yourself? When you see a person with special needs, do you see the person or the disability? 

     You know there's a saying that a smile can brightens someone's day?  A simple hello can do the same.  I often think about a song from "Yo Gabba Gabba" that says something like "no one wants to be left out, everyone wants to be included..."  That is so very true!  That is also the case for families, work, school, and community.  No one wants to be left out, or treated like they don't exist. 

     I believe that children reflect their home surroundings before anything or any other influence.  Personalities come early!  I try to speak to everyone I come into contact with.  Verbal or just a head nod or smile.  It could possibly be what someone is needing at that time.  

     Speak to Kerstin, she acknowledges everyone she comes into contact with.  She has not hearing or vision problems.  Ask her her name...we're working on getting her to hold a conversation with her Dynavox, until then, "Mommy" will tell you for her!  Talk to her! She looks UP for yes, she looks away for no and sometimes manages to verbalize or shake her head no.  Speak to her if nothing else.  She is a person too. 

     Hey, Hi, Hello, Hola, Ni hao, Bonjour, How's it going? or a simple kiss on the hand.  My 1 year old niece is adament about kissing Kerstin's hand every single time she sees her.  Now that she is talking she comes over and is speaking to Kerstin before she walks into our home, she makes her way to Kerstin and kisses her hand.  

     She seems to know that Kerstin can't verbally speak to her, but the smile says it all without a word being uttered.  It's love! It's an act of kindness.  Tell others, disability does NOT matter!  It's okay to say "Hi"!


 "A person's a person, no matter how small." ~Dr. Suess
    

No Parking!!!

     How many times have you gone to Walmart, the mall, the movies or even your child's school and someone was parked in accessible parking and you felt they shouldn't park there?  It has been too many times to count for us!  Feelings and counts aside...they have no tag or placard acknowledging the need to use accessible parking.  Let's keep in mind, not all disabilities are visible!  The person may have asthma or COPD, Epilepsy or some other type of medical need that causes them to need to park close to where they are going. 

     We also need to "keep it real" and be honest!  People are abusing the tags, the placards and overly abusing accessible parking.  It is NOT convenience parking!  That parking is there, close to the buildings and spacious enough for individuals and families that really need them.  We have people and wheelchairs to unload and it CANNOT be done so easy in the usual aisle parking. 

     I know that every single time I have gone to Walmart, I am guaranteed to see people pulling up withe placards swinging from the rear-view mirror, when they clearly state to remove before driving. 











 The part that really bugs me is when there is a vehicle parked on the striped lines in accessible! 

That is very inconsiderate when, like I stated earlier, families are unloading people and wheelchairs.  People are parking in ramp vans which need the extra space, 8 feet is printed on most vehicles with ramps! 

     Vistaprint just might be getting business!  Whenever I see a vehicle parked on the lines, they will come out and see something similar to one of the pictures and a little message saying "Think before you park!"

Be mindful, the spaces are not a luxury!  They are a necessity!  
     

Name change...new things

I decided to change the name of this blog from "Life: Just a mom raising a child with "special needs"" to "Growing with Kerstin: Raising a child with "special needs".  Why?  I am doing just that, I am growing every single day.  I am growing as Kerstin grows.  Growing in my faith.  Growing in knowledge.  Growing in awareness.   Growing in and with respect.  

All of this growing that is taking place within and around me is happening while I watch my daughter grow each and everyday.  She is growing to be a young lady that is loved more than the day before.  That love is not only from me, her mom but, it is from so many people around her. 

Kerstin is a trailblazer!!! I am blessed to be on this trailblazing journey with my daughter.  The things I fight for for her will benefit so many other children and adults with special needs and their families.  

So, we are growing and I am so excited.  I cannot wait to continue to share our journey and impressions left because I am no longer silent or afraid to advocate for Kerstin!

More to come...after all, we are GROWING,

Wordless Wednesday-June 25, 2014

Kerstin: Unplugged

     So, something new on our g-tube journey!  Over the weekend, I woke up to a big shock.  Lately, I've been trying to wake up with bolus syringe and water in hand to be at her side before the pump beeps at 5:30 a.m.  Well, Saturday morning I pull her covers back and Pediasure is everywhere!!!! The medicine port on her extension set is open.  I have no idea how much she had eaten over night.  I am frantic!  I went ahead with her water flush and disconnected the extension that was covered in super sticky Pediasure.

     Apparently, Kerstin managed to open the port on her MIC-Key set.  The only thing I can think of is the fact that she has been moving around in her sleep a lot lately.  I am very thankful for that!  Also apparent, I need to make sure that there is a pillow over the line that come from the bag to the extension. 

     I told my sisters that I knew that the med port was closed because I always hold it down when I'm connect her pump line.  I am so happy that it was the entire button she managed to pull open or out.  I think it's safe to say, we've had an interesting weekend...we are on a journey.  I'm growing with Kerstin!

This show the extension set.  Med port is what she opened!!

MIC-Key or g-tube

     

More to come...

Wordless Wednesday-06-11-2014

June 10, 2014

Wordless Wednesday- June 4, 2014

:)