Does she live at home?

     "Does she live at home?"  When you take your children to the doctor or they have been admitted to a hospital, do the doctors and nurses ask you does your child live in your...their home?  I cannot count the number of times I've been asked that!  Every time I'm asked, I always get a little bit upset.  I often wonder is it because of Kerstin's disability.  Could it be because she is now 12 and cannot do anything for herself?  Could it be the fact that I am a single parent to a child that needs care around the clock?

     Whatever the reason, I think there should be a way of knowing that bit of information without having to ask the PARENT that is sitting right there with the child!  I am pretty sure that if a child is being admitted to a hospital from a nursing facility, that information is readily available on forms and identification!  

     Just this year, back in February, I had a doctor ask me, if Kerstin lived in our home?  YES!! The questioning went further, do you think you will be able to continue to keep her in the home?  I was thinking to myself, "Do you ask other families this?"  If their child can walk and talk and do for themselves, are they asked these kinds of questions?  I told him, "As long as I'm able to do for Kerstin, she will live in HER home!"

     Do you ask or wonder if your friends and family members with their so-called "typical" or "normal" children, if they will keep them in their home?  Do you think you will be able to keep them there?  If it is not a thought that has crossed your mind, then think about that friend that has a little girl in a wheelchair, she can't walk, talk or do the things her peers are able to do.  How many times do you think she's been asked if her child lives at home?  What about the times doctors, nurses and others have wondered how long the child will be able to live at HOME?  

     It happens more than you realize or care to think about.  It hurts to be asked those questions!  It hurts to think of your child not being able to stay in the home they have known.  Some decisions are hard and they have to be made.  That is up to the individual's family, when and if that time comes.  For now,  as long as I am able, Kerstin will live in the home she's been in for 12+ years!

"There is nothing like staying at home for real comfort" 
~Jane Austen

Parental Involvement

   In schools today, what do you think one of the things some school officials would say is missing?  Parental Involvement!  Why do you think that is the case?  It is almost guaranteed that you will hear similar reasons no matter what school or community.  Reasons like, "We just can't get our parents out to support the children"  "Our parents aren't interested in things like this" and many other reasons.  Parents even give reason for their lack of involvement.  "I have to work"  "The teachers (other school officials) don't listen", and so many other reasons.  

     What about the parents that are committed?  The parents that are willing to help whenever and however they are needed?  Some are often overlooked, viewed as an outcast or trouble maker.  That has been my personal experience!   

     Speaking of my experience(s).  Time and time again and day after day, when Kerstin has been well and able to go to school, I have and will continue to be at her side.  Yet, somehow, when this mom brings up accessibility, special education, ideas or suggestions, I am considered an enemy! 

     After all, shouldn't advocacy and parental involvement go hand in hand?  When there is parental involvement, the parent(S) are not only involved, they also advocate for their child and others.  They want what is best for the child's education.  They want to make certain that the child is in an environment that is conducive to learning.  They want to ensure that the educators are qualified and knowledgeable.

     Schools/officials should want parents to know what is going on in the schools as well as with the board/district, right?  Maybe not!  With this parental involvement, parents should be able to voice their opinions, not just hold classes, make copies and sign in to meetings so that the schools look better.  Parents be engaged!  Be involved.  When parental involvement is sought, be supportive of what you get and build a relationship!

     Parental involvement=Advocacy!

     


     

Weekend in pictures!

Kerstin and her cousin/friend.

Kerstin with her former P.E. teacher

Working pups

Kerstin with Jackson

Kerstin with Roxie

Kerstin along with Lucy and Millie

Kerstin and mommy...balloon release. 

Judging and Assuming!

     Judge, not the noun, the verb, means to infer or form an opinion of something or someone. Also, to assume is to take for granted or without proof.  Who wants judgement passed on them?  Who wants others to assume the things that are less positive about them?  It is doubtful that there are many among us that would want that kind of unwarranted attention.  

     However, many people living with disabilities, whether they are physical, mental or emotional, are judged and people assume that they are unaware.  People with disabilities are often looked down upon in our society.  They are oftentimes neglected and abused.  How do we go through life without passing judgment onto others or assuming something that may or may not be?  It is not easy but, it is something we need to practice.

     I cannot help thinking back to a previous post I made on speaking to people with disabilities.  It may seem as if the person in front of you with a visible/ physical disAbility cannot understand.  Or because of one's lack of education, knowledge and understanding, assumptions and judgments take precedent.  "I won't bother speaking, they can't talk" or "they may not understand what I'm saying".  Not once asking the caregiver, if the person understands or can communicate!  

     Last Thursday (8/28), Kerstin went to a new doctor at United Cerebral Palsy-Birmingham, the Life Without Limits clinic.  The atmosphere in the office was so welcoming!  Dr. Law came in and introduced himself, we did the same.  It always makes me smile when I see Kerstin smiling at a new introduction.  Dr. Law did what I'm sure most of us want our children to witness on new encounters, the person talking directly to them.  After all, we are there because it is her appointment.  He turned to me and asked, how does she communicate, I explained and talked about her Dynavox.  

     What happened next was poignant.  Dr. Law said that he asked about her communication because one of his greatest fears is that he would meet someone and they had no way of communicating, or no one understood their communication.  He went on to say that so many times there is something there and people just need a way to get it out!  How true!  He even made a movie suggestion, one I had never heard of, My Left Foot.  The story of Christy Brown born with Cerebral Palsy and he could only control his left foot.  Brown went on to become an artist and author.  The movie stars Daniel Day-Lewis and is a must order for us! 

     Don't assume and please don't judge!  Ask questions.  It is okay to communicate...you never know what can be offered!  

Wordless Wednesday- 09/03/2014

"The newsletters came in today!!"

     That was the title of an email I received from our parent consultant on last Monday!  This is the same lady that called me earlier this year and told me that I needed to write an article for the CRS Parent Connection newsletter.  At first I had told her that I wouldn't know what to write, she informed me that she had been reading this very blog!  I couldn't deny that I was in fact, attempting to write!

     Took me a few days, wondering what to write about.  I thought about the audience...Parents, like me, dealing with similar issues, raising our children while trying to maintain our own personal lives and our sanity!  What did I want these parent to hear from someone that may be on a comparable journey?  I thought about Kerstin and how she has and still endures so much on a daily basis.  I knew that there were parents out there that would see this newsletter and they know that their child is loved and gives them the strength they need!

     "You make it look easy!"  That title came to me and I knew I had to go with it.  I have been told countless times, that I make things look easy when it comes to caring for Kerstin.  It only seems that way because I have to do them.  I have to care for her.  I have to be her voice, her legs, her caretaker, her comforter but most importantly, I have to be her sometimes sane MOM.

     I hope to submit another article sometime in the future.  That one was written as encouragement to other parents and to push myself out of a comfort zone.  I am published in a paper that will be read read by parents across the state of Alabama and possibly beyond.  We are on a journey, growing each day, hence, "Growing With Kerstin".  

     If you want a copy of this newsletter, please inbox me on Facebook-Growing With Kerstin.  To get future copies please send your name and address to:

Susan Colburn

Children's Rehabilitation Services

602 S. Lawrence St.

Montgomery, AL 36104

     

Have a safe Labor Day!