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...

What's in an introduction?

   

  Hi, My name is Mattisa.  This is my daughter, Kerstin.  How much more do you just willingly give when you first meet a person or a group?  When you meet new people do you tell them your name, your medical diagnoses?  Not many of us do!  Then why do some feel the need to just volunteer information on their child with special needs?  "Hi, I'm "Sue", this is my son, "John", he has Cerebral Palsy, he can't walk, or talk, etc..."  Would you tell another person things about your "typical" or so called "normal" child, especially when it's personal and medical?

     I've sat in meetings and conferences and other gatherings when parents have introduced their children and they have pretty much told all in the matter of seconds.  I can't help but think and wonder, would the child want you to do that?  It's doubtful, especially if they are preteens or teens!  I can't help but think that the child(ren) would be like "Really, mom, you're giving all of my personal information out!"  

     What's in an introduction?  A greeting?  Your name?  Your age? Your medical history? These things are appropriate in the right settings.  Medical history, I feel should only be given when you're meeting new doctors with/for your child.  Think about your child, as the person first...would you really tell all at the first meet?  

     Yes, this blog is dedicated to Kerstin and our journey!  Yes, I've included medical things here about her and I've done so without giving too many intimate details.  Cerebral Palsy is an umbrella with many details underneath and so is Epilepsy, there are many types of seizures.  

Wordless Wednesday- 09/24/2014

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 :))

Wordless Wednesday-09-17-2014

Manic Monday

     Today was Kerstin's first day going back to school after being home for a week with respiratory issues.  Last week was really rough.  There were many nights that sleep was almost nonexistent.  Kerstin was given breathing treatments and CPT around the clock.  The girl is a tough cookie!  She is my trooper!

     "Manic Monday" was exactly how our morning started off!  First thing, I had in my mind that today was the day that her Baclofen increased again.  That was NOT the case, the day is tomorrow!  She will once again increase, this time going to 1 and one half tablet, crushed and softened for g-tube administering.   I am so glad that I looked at the calendar on my cell and saw that the actual increase is tomorrow.  

     Second, after her bath this morning, I went ahead and switched her Scopolamine patch.  She wears one behind one ear for three days and then it is switched to the next ear and on and on.  We get to school and she's having therapy, therapist is working on some neck stretches and there is NO patch behind her right ear!  I can only assume that I attached while her skin was still too damp.  

   My issue with both of these instances is that insurance paying for the meds too soon is always tricky.  She will run out before time.  That's another issue for another day.  I am just glad that she was able to go back to school today!  Even if she did doze off in class!  

  



More to come...

Ever Growing Vocabulary.

     I must say it again, having a child with "special needs" causes the parent to learn so much and learn it quickly!  You would be surprised at the amount of information that is giving to a family in a single doctors visit, an IEP meeting or at a therapy appointment.  The things and information I used to take for granted, I can no longer.  

It's been a long week, she hasn't been feeling well.  So, seeing this smile return made my night!

     In the not so distant past I had heard of Baclofen (BAK-loe-fen) and Scopolamine (which I keep wanting to pronounce sco-lop-a-meen instead of skoe-POL-a meen).  Never knew that one day, Kerstin would actually be recommended for them both.  That's where we are on this journey now!

Baclofen:  Used to treat children and adults with severe spasticity, and to help with the treatment of physical and occupational therapies.   Kerstin's PT suggested we see her newest doctor, who is a doctor of physical development and a long background with Cerebral Palsy.  Both her OT and PT sent separate letters to Dr. Law suggesting Baclofen to aid in their treatment.  

     Kerstin can be very rigid at times, making it difficult to dress her as well as perform various therapies.  Also, she becomes so spastic, that her kicking becomes so hard.  It is hard to see your child go through things like that!

     The second medicine; Scopolamine patches. The little patch that was featured in the Wordless Wednesday 09/10/14 post. These little patches are often used to prevent nausea and vomiting even motion sickness.  So why this patch for drooling?  Scopolamine or "transdermal patches" have been found to be very effective with controlling the drooling in patients that have traumatic brain injuries. 

     No medicine comes without side effects.  Both may cause dizziness and drowsiness.  The Baclofen causes frequent urination while the Scopolamine causes dry mouth and throat, as well as dry skin (it dries liquids) and we were told to make sure that Kerstin does NOT get too hot and has plenty of liquids!  Needless to say, you won't find us out and about too much in these final days of warm weather!

Lets not forget what happened on this day 13 years ago!

Wordless Wednesday- 09/10/2014

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!