Her Wheels...My Shoes...

     

   There's a saying that goes something like you don't know about a person's life until you've had the opportunity to walk a mile in their shoes.  Basically, until you have had to go through what the next person has gone through, you don't have a complete understanding of what they deal with each day.  This is especially true  when it comes to understanding what a family is dealing with when they are raising a child with special needs.  Oftentimes, when raising a child with a disability, things don't happen as easily or as quickly as they usually would.  Nor do they happen as others traditionally think that they should happen.

     I've seen post after post on blogs and articles where parents of children with disabilities wanting people to understand them.  Just because they have a child with special needs doesn't mean that they want a life where they don't have the constant worry about their child(ren).  This life, of raising a child with special needs does require dedication and a tough skin.  There is also a facade that shows extreme strength.  Underneath it all, we need someone to listen to us, to be there and just to understand.

     Her wheels...my shoes...you can't understand what we have to go through unless you've done it.  I can guarantee you that most families raising children with special needs don't want others to sympathize or feel sorry for them.  We truly want understanding, and a little compassion!  




     When we're a little behind for an appointment, school or other things, know that it is not intentional!  Think about our situation.  It is not one of those that I can say to Kerstin, go get your shoes, your clothes, or get dressed, eat your food, brush your teach...take your meds.  I have to do all of that for her!  Then, I have to do them for myself.  Let's also add in the factor of a sometimes spastic child. Dressing is little more difficult.  

     When the journey is understood, it means more than you even realize.  Take a stroll in her tracks and a walk in my shoes!  Tell us about your journey...

More to come...

Some People Just Don't Understand!

     Some people just don't understand!  Remember DJ Jazzy Jeff and The Fresh Prince's "Parent Just Don't Understand"?  In the song from 1988, Will (The Fresh Prince) talks about how parents are all the same, all across the land...they just don't understand their kids. He goes on and on about how his mom made, in his opinion bad choices about the style of clothes and many other things parents and their children did not agree on.  

     This post isn't about parents misunderstanding their children or vice versa.  Like the subject states, "Some People Just Don't Understand".  As we all are pretty much aware, the very arrogant Kanye West went on a rant at one of his recent concerts and basically demanded that everyone in the audience stand in his honor.  He apparently became offended when some patrons did NOT stand, not because they didn't want to but because they couldn't!  This fact had to be verified by his (Kanye's) handlers.  Shameful!  

     No national outrage of this man's ignorance.  This story didn't make it's rounds on the evening news.  However, parents of children with disabilities and adults living with disabilities were very much outraged!  I know I was and still am!  My daughter loves music and I know, if she could she would be dancing and singing to her favorite tunes!  The actions Kanye showed at his concert and the blatant arrogance he showed after the fact is often expressed by many, in more subtle ways.  So many people say things that shows that they have no full understanding of what it is like to live with a disability or to care for a person with one.  

     When you factor that in, it is, as a presenter said at a conference I recently attended, ignorance.  Ignorance is when there is a lack of knowledge.  We have all been ignorant to many things in life.  You have no knowledge of something until you learn about it.  So, why was Kanye still ignorant on the entire audience standing?  That was both ignorance and arrogance.  What do you call it when you're in church(es) and you hear things like "you're not blessed" or "if the Lord's done anything, you should stand..."?  I'm not sure, and I don't care what the world thinks the Lord has or hasn't done for me.  I will continue to sit with and beside my daughter and many others that cannot stand in the face of  those that just don't understand or just don't care!

     So, Kanye and preachers and church folk around the world, the little music lover in the picture below, isn't able to stand on her own right now, she is beyond blessed and loved.  Her mom (me) is her biggest fan and number one supporter...I sit with her and stand for her and I am a voice for her! 

"Momma's daughter :))

Wheelchair For A Day!!

     You know when something is constantly on your mind, you have to get it out there, so to speak.  Getting it out there can be talking about it, writing about it...whatever, however.  As long as it is o-u-t!  I made another Facebook post about the fact that Kerstin is at school, in an already snugly fit wheelchair, yet there is no another way for her to sit that is supportive.  

Very similar to Kerstin's chair!

     The beanbag she used for years before moving on to middle school is now flattened.  We were told by the special ed coordinator that "if it was purchased with special education funds, it can be used by any student".  Kerstin being the only user of that beanbag was NOT a problem until I went to the newspaper on the horrible accessible issues at the school.  Never-mind the fact that Kerstin and one other child were the only ones in wheelchairs.  He wasn't in attendance much this past school year.  Nonetheless, I was able to borrow a Tumble Form chair from CRS.  Kerstin used that chair until she went home on medical leave, prior to her spinal fusion.   

    After surgery, Kerstin had extra inches and pounds on her and quickly outgrew the borrowed chair!!  We've been seeking funding and sources for a chair that is big enough for her now.  It's coming soon, like the newly ordered wheelchair, they take a little time.  

     The back-story came to say once again...if these school leaders were in or had to be in wheelchair all the time...how would they handle things?  No other seating option.  No way to get out of the chair unless she is being changed!  NO, Kerstin will NOT be in attendance for the entire school day without another way to sit!  You know once I said that, letters are needed!  I already saw that one coming!  

Therapy/changing table.  Can't sit here unsupported!

     Kerstin's ortho specialist said something that I will not forget.  At her appointment last month when we were talking about school and seating, he said "It seems like so many people in our schools have lost all common sense."  That was powerful!  I haven't been seeing much common sense lately.  The people within her school system that seem to have it are often treated badly, and please don't form a decorum with Kerstin's mom.  Some have questioned how one could be nice to me after my going to the media.  Makes me laugh!  

     "Wheelchair For A Day!"  I would be willing to do the leg work to find chairs for a day.  Would the superintendent, special education coordinator, all central office administrators, and every board member be willing participants in "Wheelchair For A Day?  Our friends in the media will also be invited!

Inclusion!  That means,  YOU try a Wheelchair For A Day.  Share your experiences!

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 jokes...like 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..

Crowned!

A goody bag too...

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

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?

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