Monday, September 29, 2014

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...

Thursday, September 25, 2014

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.  

Tuesday, September 23, 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 :))



Monday, September 15, 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...

Thursday, September 11, 2014

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!