Thursday, July 31, 2014

Princess Smiles-a-lot!

2nd Annual Alabama Angels Pageant

     The 2nd Annual Alabama Angels Pageant has come and gone!  I am sure that there were many participants that did not or could not participate in last years festivities, Kerstin included.  This year was different.  I mentioned on the Alabama Angels Pageant Facebook page months ago that Kerstin would not miss the event this year.  There would be no more hospital stays that would keep her from Hunter Hills Church

     You see, at the time of the pageant in 2013 Kerstin was just coming off of her 2 hospitals stay after two separate surgeries one month apart. The first being a bi-lateral triple arthodesis on both feet and the second was to have her g-tube placed.  However, pageant directors came to our home to present Kerstin with her crown, sash and goody bag!  Her day was beautiful all the same just not the full experience with all the bells and whistles. 

     The Friday before the pageant was a day of prepping and pampering for Kerstin.  Hair, nails...somewhat of an in home spa day for Princess Smiles-a-lot!  The excitement was brewing in Kerstin, I could see it all over her face.  She was so excited that she woke up Saturday morning around 4:45 a.m.  YES!  I went ahead and checked all of bags to make sure we had everything.  

     Upon arriving, the carriage rides were in full effect.  The decorations were so beautiful.  Volunteers were on hand to greet everyone, opening doors, just so much kindness.  There were booths set up to provide valuable information to the families as well.  We checked in and was assigned Kerstin's Guardian Angel.  I will tell you, I know we had the best one in the building!  

     The angels were so beautiful!  This day was a day they had the opportunity to shine and were included.  They sang, danced and told my little lady did with her Dynavox.  

Here's how the day went...

Dressed, belly full, now it's time to prep!

Actually smiling while I'm doing her hair!

Director, Renee Lantz
Pageant Team Leaders/Coordinators

Getting ready to go on stage...her cousins at her side.

Look mommy..I have on a little lipstick!

Her name in lights!

Little jokester is coming on stage...
Kerstin with her Guardian Angel, Carol and emcee, Chris Britton
Telling her jokes with assistance!

Angels and military excorts!

Crowns and sashes..

A goody bag too...

The day is done...dreaming about the next one!

Wednesday, July 30, 2014

Wordless Wednesday-7/30/2014

Tuesday, July 29, 2014

Access for everyone!

     While working on a class assignment, I came across somewhat of a challenge for everyone.  I will include it later in the post.  This challenge made me think about what I have experienced in the past week.  After Kerstin's therapy appointment last week, I had to go to the Sears Repair store to pick up some things for the lawn mower.  This was my first time going to this location.  I must say it was an eye opening experience.

     The experience was so touching, I had to tweet Sears about it and I've sent an email to Americans with Disabilities Act (ADA) about this and the need for better changing tables/stations in public family restrooms.  We, my daughter, my 10 year old and 4 year old nieces pull into the parking lot.  There are faint lines for accessible parking, Great.  No one was unnecessarily parked there, even better!  The store has steps/stairs to the entrance door and NO ramped access!  NOT GOOD at all!  I had to leave my daughter and nieces in the vehicle, running so that they could have air.  I had to ask the 10 year to lock all the doors until I returned.

Access for everyone!

     A few days later, I mentioned the experience to my sister.  She said something so critical yet, something I know many people do each and everyday.  When you have the ability and use of all limbs and can climb stairs without incident you don't think of those among us who cannot do the same.  

     So, I will challenge you to try this.  I think it's worth it. I even posted it to Facebook/Growing With Kerstin. 

Worth the experiment! Please take notes and share if you don't mind.

Many of us take for granted our ability to come and go as we please. With the exception of a few buildings, which are off-limits to the general public, we are free to enter any building we wish, whenever
we wish. During the next week, keep track of the buildings you enter, the streets you cross, and the activities in which you participate.

* How accessible are these to persons who are in wheelchairs, blind, or hearing impaired?
* Are the room numbers in your building labeled in Braille?
* Are the steps ramped or is there an accessible lift or an elevator?
* What areas have not been made accessible to these individuals?
* How does accessibility limit their participation in the activities in which you regularly participate?
* How could these areas be made more accessible to individuals with disabilities?

Tuesday, July 22, 2014

Change the Changing Stations!

     You cannot count the times you've been out with your family whether, it was shopping, dining, appointments, entertainment or whatever, you've needed the restroom!  If you haven't that's a new one!  If you haven't it is a guarantee that your little one or the little ones you're traveling with have needed the restroom.  It is a part of life.  Whether it be a newborn or an elderly person...the restroom break is inevitable.  

     For many of us, we are raising children with special needs.  Those needs include having to be changed!  This is NO easy feat when the person needing to be changed is well over the height and weight limit of the very popular "Koala Kare" changing stations that are readily available in almost every restroom I've been in.  You've seen them.
AMC Theaters-Montgomery, AL


     There in-lies the problem, the big issue!  Babies and infants are NOT the only people in our society that needs the changing stations or access to a public restroom.  We have preteens, teens and even adults that cannot go into the restrooms and use the toilets or the urinals, my preteen included!  

     I wish you could see the acrobatics I perform when I am in the restroom changing a 75 lbs/ 4 feet whatever inch on a changing station that is only designed for a baby.  I'm usually standing on one leg because my knee is under the station for extra support!  I'm leaning to her chair for her toiletries at the same time keeping a hand on her so that she doesn't come off the side!!! Some of they are higher than others making the process even more challenging!

     I know that something better can be done!!  We have so many family restrooms now.  They too, are available almost everywhere I've gone lately.  I know an adult size station can at least be placed in those restrooms!  Our families deserve that and the privacy!

Changing area at Children's Rehabilitation-Montgomery, AL

CRS-Montgomery, AL

     I know a simple table or cushioned bench is not hard to place in restroom and place a simple accessible sign above it is not expensive!  Next stop, Americans With Disabilities Act (ADA).

More to come...

Friday, July 18, 2014

Not all moms share the same secrets.

     I recently read an article from 2013, posted by a mom of a child with special needs.  The article was supposedly her list of secrets and titled "6 Secrets Special Needs Moms Know But Won't Tell You".  While I can't help but agree with some of the listed "secrets", some I cannot really relate to or just from a different perspective.  As parents, we all do things our own way and raising our families is one of those things. 

     Mom, Suzanne Perryman, in the article listed her 6 secrets and gave her reasons for them.  Her list went like this:  

  1. Special needs moms are lonely
  2. Special needs moms have to work extra hard to preserve their marriages
  3. Special needs moms are not easily offended
  4. Special needs moms worry about dying
  5. Special needs moms are fluent in the transforming body language of touch
  6. Special needs mom know how to savor the gift of a child saying "I love you"
I like Suzanne's list, and like I stated some I can relate to and some I cannot.  
     "Special needs moms are lonely", I can relate, at times it seems like no one fully understands what you are dealing with.  Taking care of a child who needs you for every single thing, doesn't give much room for other things or a very active social life.  The loneliness is especially harder since my job is with her at her school as her aid.  Sometimes even family tend to go their way socially and leave us in our own world.  Yet, they come back to "talk" about it all.  It may take us longer to get prepared to leave, once we do, it may take longer to load and unload but, we like being on the go.

     "Special needs moms have to work extra hard to preserve their marriages", okay!  I'm a single mother.  Kerstin was diagnosed and her dad walked away!  Yes, I have attempted to work hard to preserve relationships.  Even when love has been expressed to me and my daughter.  I guess when we can't always be on the go like others, it makes it a little bit easier to walk away and pretend we never happened.  That is one thing I cannot and will not continue to do, try to keep someone in our lives when they don't want to be here.

     "Special needs moms are not easily offended". I think that all depends on the emotions, the day and what's being said.  I am very easily offended by ignorance. Do I get offended when people ask questions about Kerstin, her diagnosis, her likes or dislikes?  Not at all.  What offends me are the stares.  The "what's wrong with her?"  Nothing is wrong with her, she's made the way she was intended to be made.  I like when I'm asked questions because you are genuinely concerned.  I think the more I can help someone understand, maybe the less stares she will get.  I am all about educating those we encounter, from the youngest to the oldest. 

     "Special needs moms worry about dying".  This is true.  I must admit that at times I have had very selfish thoughts about death.  I even wrote about Life Expectancy recently.  I often wonder what her life would be like if I passed away "now", before her.  I have even found myself praying that we go at the same time, that way I won't have to live and carry on without her and she wouldn't be without me.  Death is that one thing that is certain for all of us and we don't know when it will happen.  We just have to live each day and love like there is no tomorrow.  

     As far as special needs moms being fluent in touch and body language.  I know I have to be.  My daughter is non-verbal.  I have to notice her behaviors, her facial expressions and all.  She has a language all of her own. 

     "Special needs moms know how to savor the gift of a child saying "I Love You".  Again, Kerstin is non-verbal.  Her smile and those big beautiful tells me that she loves me.  When no one else is talking to me, my little love is a constant!  Feeling her arms around my neck is "I love you" enough for me.  Check out my Facebook update back in May.  It's moments like that, makes all of this worth it.  

     So, we all have secrets, we all have fears and we all deal with them differently!  One thing is for sure, we have to love our children, no matter the need or ability!

In all her tiredness, she enjoyed!

Suzanne Perryman, 2013.  6 Secrets Special Needs Moms Won't Tell You.

Thursday, July 17, 2014

Georgia on her mind!

     Well, the weekend of July 11-13 has come and gone!  The weeks and days coming up to the trip, I became worried on how we would travel with Kerstin's wheelchair, luggage and that included a Kangaroo pump and the pole which it hangs.  Little did I know, the medical supply company would screw up her pump bag order, leaving us without bags for 4 nights the week prior to our trip.  

     I had to consult with my nurse sister, on how to rework Kerstin's feeding schedule so that she wouldn't miss the amount the she would have gotten overnight.  Turned out to be easier than I anticipated.  Not having to travel with the pump and pole, along with Pediasure, syringes, bags, and extension sets that we already had to carry.  The boluses turned out to be pretty easy, the adjustments were too.  
Kangaroo Pump/Pole
     Now, on to the fun stuff!  Kerstin has been a fan of the Georgia Aquarium since the very first time she went in 2007.  She was in love with all the aquatic life and her mom was in love with the delight in her eyes!  I'm sure every parent wants to witness their child(ren) doing or seeing something that they love.  

     So many animals to see, so many people!  It is my hope that one day soon, people will realize that people with disabilities are ever present and they enjoy doing things just like everyone else.  I say that because we constantly came across people that were seemingly unaware or just didn't care that there was a child using a wheelchair, trying to enjoy the aquarium just like they were.   

     First stop, the Dolphin Tale show, we couldn't take pictures or videos!  The show was beautiful!!  Kerstin didn't take her eyes away from the pool area where the dolphins and trainers performed.  On to the next attractions.  Tank after tank, we saw beautiful fish, otters, whales and sharks.   She was worn out but, she had a great time!  Here are a few pictures we'd like to share. 

Georgia Aquarium, Kerstin is on her way!
On our way in, an employee on break took our picture!

Whale Shark

She loves the Belugas! 


She got to see divers in action. 

Got to see an interesting parade through the lobby. 

Until next time...

More to come...

Thursday, July 3, 2014

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