Showing posts with label Special Needs Blog. Show all posts
Showing posts with label Special Needs Blog. Show all posts

Wednesday, October 26, 2011

I Notice


This is one of those morning's when the special needs aspect of my life rattle around my head just a little louder.  May I remind you Dear Far and Between Reader, this is a special needs blog where my intention is to share that the special needs life does not take us down the average path and my vantage point sometimes takes me in odd and frustrating directions.  


Today, I am simply focused on the little behaviors that I interpret as revealing a person as dismissive of those around them or caring.  Now, I must remind myself to not be so black and white or even judgmental because I certainly resent being judged.  So, perhaps I'll just leave this as a bit of a rant.  If we are all lucky, I'll remember this in my own reactions... but don't hold your breath.  As Riley's mother, I get to be Crazy Woman or the term I read recently may be more appropriate, "Dragon Mom."


The day beyond our own walls begins with the arrival of Riley's bus (bus 27127 is quite reliable and calm recently).  It is my neighbors who show incredible disrespect during Riley's pick up and drop off in front of our home.  On many occasions neighbors have passed by the bus while lights are flashing and Riley is loading.  Last May, I fired off an email to my community not even thinking about who the latest lawbreaker may be: I simply knew I was angry and offended.


"Subject: school bus
... it is illegal to drive past a school bus loading a child... yes I see them and will definitely remember their lack of respect and consideration in this matter.  Thank you."

Response:

"I know you are speaking of me as I passed the bus this morning. The red lights flash the entire time the door is open. Your child is being loaded from the house side. There is never anyone on the street side. Are you suggesting everyone sit and wait the entire time the loading process is going on? I will make sure I never leave the community by going past your house again so as to not upset you."

I shared my frustration with another friend and neighbor who seemed to empathize.  This week, same neighbor drives right around the bus with flashing lights.  ?. Shall I take this as my opinion and the law are not as important as your needs Dear Neighbor?  I saw you.  Now what should I do?  Pretend that I did not?

While I was busy ruminating on the lack of respect toward my child, I drove up to Riley's school to collect him for physical therapy.  Being the quiet lunch hour I parked at the front circle, threw open the jeep hatch and arranged the ramp before bringing Riley out to the car.  When I returned to the vehicle, mowers were going all around and it was quite loud.  My focus turned to Riley's happy greeting, removing him from the wheelchair and settling him comfortably in his car seat.  When I brought my head back out from the car I turned to discover the wheelchair no longer beside me. 

What?!  Oh!  There stood Jamie (I'm certain I've mentioned his kindness previously), the gentleman in charge of Rayma's facilities.  He had just dismantled the chair as he had seen me do before, slid the heavy chair into the back of the jeep, folded up the ramp and was closing it all up nice and neat.

How do I react to this?  This is an amazingly kind and sweet gesture.  How many times have I loaded that chair in my own driveway, hugely pregnant and had every male neighbor - and at the time one lived in every house two to the right, two to the left, four across the way - and the only man to ever to rush to my aid (sometimes straight out of the shower and barely dressed was my own husband).  There are some other random individuals to have helped over time and I remember them.  I will always remember them. 
Yes, it's a big deal to me.  Thank you Jamie!  You are pretty wonderful.

We are all special... by Stacie Wiesenbaugh 

Saturday, July 30, 2011

July Posts of Note

There have been a few posts this month which touched the special needs parent in me:

"Dear New Parent" by Kidz is a gentle letter about the journey ahead. 

In The Night.


Justice for Ayn, the nine-year old removed from her home.

The Art of Disability Poetry. 

Outrageous Fortune: If a Tragedy Happens and Nobody Cries Is It Still A Tragedy?

I want my child to be treated as normal and appreciated as special at the same time, sounds a little crazy doesn't it. The extended family for the special needs child, grandparents, aunts, uncles, cousins... will never understand our lives or our minds and don't really want to get in our heads... it's too hard and too close. They have the luxury that they don't really have to understand us.

About the Small Stuff: Playgrounds Make Me Emotional.  Me too.

Also, a seminar in Naples, Florida for Special Needs Planning on Aug. 3rd.




12 Ways to be a better parent.

Discovered programs:

Beach Wheelchairs through SMILEMass. 


"The Music Lab" by More with Music is a fun way to work with instrumental sounds on the computer.

Autism is not us - but I will share anyway:


Because I enjoyed:


Radical Ramblings and Thoughts of a Southern Girl has a gift for shining the light on the world.


Special Needs community:

Forget-Me-Not Friday is a blog hop with a purpose of spreading the word about special needs children waiting and hoping for a home of their own.


  
Parenting SpecialNeeds: Ask The Nurse? Have a question for “Ask the Nurse”.  Post your questions here or send an email to advice@parentingspecialneeds.o​rg
Parenting SpecialNeeds: Calling all Authors & Publishers! if you have a children's book that teaches about differences and disabilities. We would like to invite your to participate in our Different-Abilities Awareness Initiative. Pls contact us at info@parentignspecialneed.org
 

Thursday, June 9, 2011

Sunday, May 22, 2011

A Moment to Breathe

My greatest challenge is simply the constancy of being a special needs mom.

John, my husband, would prefer that I not use that term, "special needs."  Everyone has their issues and he is correct.  I see this one issue as unique and something which should certainly be address.  We have one special needs child and one typically developing child... there is definitely a difference in raising the two.  For instance, Ronan, the typical child, is out at a Pokemon Tournament with "Kappy" (my mom Kathy).  John is fossil diving  in preparation for a presentation tomorrow morning at The Village School.  Riley is naturally right beside me.  

Riley has been right beside me all day and all night.  He requires constant vigilance.  Even as I write this post I am half aware of my task while I watch and listen to his every breath.  He is working very hard in his stander, because as you may remember that is very important for his well being.  This is however, my moment to breathe as he is not actually in my arms at this moment nor am I holding his hand while he sits beside me.  Only recently have I gained these precious moments and I remember all too well what it is like to exist without them.  We have come very far... especially Riley and I am proud of his amazing achievement to be able to process and live in this challenging world.

There will be more on this... I am not really certain how to communicate this constant alertness.  Fortunately, as I mentioned before, this is a blog and I have time.   Though I was kind of looking forward to the end of the world yesterday... oh well, guess we keep on going!  Perhaps there is another parent out there who knows how to explain this who may be willing to share?

Better go now... he has been in that stander long enough and must be quite thirsty by now!

We are all special... by Stacie Wiesenbaugh

Tuesday, April 26, 2011

Just in Time: Tim Gort's "Good Grief. Bad Grief."

"...To me, the difference between good grief and bad grief is that good is the kind that you don’t bury.
Instead, you pull it up to the top by talking about it, sharing it with others, writing about it and learning to accept it for what it is – a physical, emotional or spiritual end that needs to have resolution in order for you to peacefully move on (with special needs children it can certainly be categorized as hopes, dreams and expectations or much more).

Bad grief, on the other hand, is the kind that can fester and cause you to live life harder because you have emotions or communications that are unresolved. The bad affects all of your relationships over the long haul. Think about loss of any kind – physical, emotional or spiritual – and you might find that they have had a dramatic affect on your life..."

Perfect timing on this post by Tim Gort.  I was just questioning why I need to blog about special needs and wondering if I should stop.  I see my mission clearly enough, but am so far a little shy of my goal.  Writing as the mother of a special needs child is at risk of being one dimensional.  I am limited further by not intending to be a full-disclosure and a reluctance to speak for my husband.  He is just as much a part of this process and wounded by Riley's disabilities every bit as much as I am.

Writing about this subject certainly exposes the raw emotions of my family.  It also opens me up to even more misinterpretation when I am trying to create just the opposite with some understanding.  Should I choose to go forward I have quite a task ahead of me.  Please be patient with this process.  Most importantly I am trying to share the experience and not trying to solve anything by it.  I share it for those who may benefit, perhaps grandparents, aunts and uncles who are in a position to need insight.

Thank you all for understanding and not trying to fix it:-)  Our future is for us to discover.  Stacie

Wednesday, March 23, 2011

Riley's Smile Needs A Blog

  Today is March 23rd, 2011.  I have thought about why this blog should be written for a long while now.  Long enough... it's time to actually blog!
  No one should need to write this blog.  No one should need to read this blog.  But that is in a perfect world.  I need to write it and others will need to read it.  This is why... Riley and his/my family are a special needs family.  Not everyone can understand all that being a special needs family my involve.
  My primary intent is to share what it does mean to be special needs to those who are just outside of this experience but have a need to understand it.  This is going to be a challenge for me.  How do I share our experiences while not overwhelming myself and readers.  Today, that is not a problem.  I am the only "follower."  Hopefully this will change very soon.  However, if it remains me as the only reader than I have a wonderful self-therapy.
  Thank you for writing Stacie:-)