Touch of a Child

Touch sooths us.  Touch is a physical display of our love.  Touch is painful.  The human body aches for the touch of another.  The touch of my son brings an array of emotions rushing through my mind.

A NICU parent learns within moments that our gentle touch overwhelms our preemie child.  My first reach toward Riley received quick warning from the nurse guarding Riley, "You must touch him firmly."  This is my baby.  He has been through so much when only hours old I needed to convey my love.  My first gentle touch met with shudders through Riley's 4'8" body.  The NICU parent learns very quickly our touch must be firm from that very first moment.  It is the firm touch that our child needs.

We are all special... by Stacie Wiesenbaugh

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

Is Rejection Painful?

New York Times:  Rejection May Hurt More Than Feelings.

Many special needs children and their families understand this all too well.  We are always on the outskirts of society.

I am reminded today that I had a Great Uncle Who Shall Remain Nameless.  He remains Nameless not because I protect his identity.  He remains Nameless because no one would introduce him even to relatives or mention him... I learned about him by chance.  He was special needs and unwelcome even in his own family.  I feel pain myself when I think of how he must have suffered alone.

We are all special... by Stacie Wiesenbaugh

Good Friday

It's a day of celebration here.  It's my mother's birthday today.  We are all so grateful to have her nearby.  Just knowing she is close helps keep us just a little more grounded.

 Yes, I do believe this is from the seventies... but it's the one in my computer... low energy remember.  Hmm, it seems that those chops are coming back.  Here's another one from the seventies, Halifax, Nova Scotia if I remember correctly.  Uh oh, are you adding up that 28 yet.

... and Wednesday should have been my parents anniversary.  It's been seventeen years since I lost my Dad.  I remember him every day.  It is these past eight years that I realize I needed him the most.  His perspective and participation in our lives would have been invaluable in all the experiences we have gone through since Riley's birth.  Mostly though, I just miss my Dad.

These past few days I struggled to find time and energy to formulate the next post.  My mission to share the special needs life is laden with emotion.  Then I realized that the difficulty is my post.  This niche post is about special needs and it isn't easy to accomplish everything.  Riley's last illness still hangs on and I have spent many hours in the night comforting him and trying to find a little sleep for myself.

Once the day comes along, I simply go through the motions.  However, there is no end to my blessings either.  Riley is patient and loving.  John always has more to give no matter what he encounters in his day.  We have also found a support system along the way.  Donna Lee dropped in again.  This time to make sure I start on a Pilates regimen ... ouch.  In the past 24 hours, John has had plenty of work, sold a beautiful fossil (I suspect he'll miss that one), sold Arbonne, cheesecake and keflie's.   Both boys are happy to be home for Lee County's spring break.  Yesterday I had the opportunity to chaperone Ronan's class at the Naples Zoo, I do hope he enjoyed having his mom along.  The boys and I all had kisses from Om.  Miss Zita, our temporary Lithuanian PCS from Joanne's House (Hope Hospice,) got Riley all cleaned up and happily traded beautiful vegetables for baked goods - though my intention was for her to simply have them... he feels so much better and is next to me singing along to the music.  My friend Jessica is in town; maybe I will actually go out on the town, maybe...

The days are full of good and bad.  There was a time when all we managed was getting Riley through the night and day... more on that later.  Yes, a lot is happening in the day now.  We muddle through and the energy will return.

A Night in the Life of Riley

It was another rough night for Riley.  I held him through most of the night.  John had the sheets going... again.  Think I'll skip the details today.  I am so grateful I don't do this alone.

Sharing this is about giving a glimpse into a special needs family.  As a mother to a typically developing child, I see the difference keenly.  Even when severely ill, a typically developing child is a dream to care for.  The special needs illness brings me nearly to desperation.  However, I remind myself how far we have come in improving Riley's health and abilities.  John and I spent five years taking turns holding him or being immediately beside him through every night of his life.  There will be more on this later:-)  We have come extraordinarily far and we can handle a night here and there.

Today I share a link to another blog, Enabled Kids, concerning a reminder on treatment:  "Any minor cerebral palsy can become severe if it is not treated properly through his lifetime, because it is important to adjust to the individual changes taking place with the child himself, along with his growth and development."

Pictured above, Donna Brooker and Ohm, give Riley a much needed massage therapy session.  Miss Donna generously shares her time and stops by anytime she's in the vicinity.  Riley needs constant hands on to maintain health and flexibility.  Touch is essential to everyone's well-being, especially for a child who has difficulty interpreting his environment.


Welcome Russia and Hong Kong... I encourage you to share how different your experience is to mine.

As always, your thoughts are welcome.   Stacie

Bus Driver Roulette

This year we began with two miserable human beings as Riley's bus driver and assistant.  Every morning I felt sick to my stomach when I handed him over to them.  A simple "hello" was completely beyond them and I always wondered how if Riley received any aid at all during the long trip.  When he returned home his head was often stuck underneath the head rest.  They did not care.  There will be "more on this later" to uncover the transportation story.  One day substitutes arrived with great big smiles and "hello's."  They misery women had "bid" off the bus and I danced in the street.  Thank you, thank you for taking this on with great big hearts!

What I didn't understand at the time is that as substitutes these two had to be switched out every time someone else with higher status made a bid.  Our busload of special needs children are going to find the driver changed for the fifth time this year come Monday morning.  I also have no power.  The Lee County Public Schools Transportation Department on two occasions in the past 4 years has only twice even attempted to discuss my son's transportation issues.  I've sought help from every source in the school system but it appears that Transportation is completely isolated and insulated from addressing any concerns.

They have their systems and must abide by union rules, etc.  However, I do not understand why they cannot even communicate with the parents of their very precious cargo.  They are delivering a child... not my mail.  Which by the way, my husband wonders why I would even attempt to take on Transportation and declares I may as well take USPS to task.

Monday morning we lose Krystal.  I am grateful that for a little while Riley had a driver who truly cared about her charges.  It may well be that the new gentleman will be just as wonderful.  It may also be that he may be just as miserable as the first two.  

Welcome to bus driver roulette.

Anyone else out there have similar experiences?  Anyone fortunate enough to achieve a dialogue with Transportation?  I really would like to hear about it.

Stacie Wiesenbaugh

A Day in the "Life of Riley"

This expression certainly has a very different significance in my family than it's intended meaning. 

The enormity of my mission here strikes me this evening as I prepare simply to relate the events of our Monday.  It is not possible to fully share the experience; so I remind myself that the idea is a glimpse of the special needs life.  I also remind myself that this is a niche blog not a reference book by a professional.... and I may very well be the only one reading it.  Well - maybe my son Ronan, my younger son, will one day read it as the easiest way to understand his family dysfunction.  But hey, we all have dysfunction.   Perhaps I will simply not add any more concerns to the day and just make some "notes to self" for more information later.

Rising with Riley after a night of Riley and then getting out the door with Riley... more on that later.  No school today.  First appointment of the day is 8:30 am 45 minutes north  with the Pulmonologist, Dr. B.  Always take the first or second appointment of the day... more on this later.  On this very humid morning, Riley was dressed lightly.  As we headed north a heavy downpour slowed us down and drenched us while unloading from the car... more on this later.  Should have called this post "More on this later."  We had a new experience this morning.  I put together his wheelchair and our supplies underneath the building entry while a pretty Latina unloaded her three young boys into the same space as quickly as she could to keep them dry.  Normally, most people pretend the child in a wheelchair is simply in their imagination.  As I brought Riley through the rain, she whipped a Whinny the Pooh blanket off her baby carrier  and threw in over the wheelchair before I could put him down exclaiming  "He'll be cold!"  She touched my heart worrying over my son while her own waited.  She eventually accepted the blanket back when everyone made it inside.  I'm sure she has no idea how exceptional she is... but I will remember the few moments I was near her.

Time to go through the details of my day a little quicker.  They are important because the difficulty of getting  through a special needs day is so huge to me even after all these years.  However, it's a niche blog and I have time.  There was a plan for the day.  As always it changes.  Breakfast for Riley in the exam room...  I feed him when and where I can.  Today I want to recognize how greatly I appreciate the professionals caring for Riley, though sometimes I do take issue:-)... more on the later.  Dr. B is wonderful with his gentle probing to ensure he learns all the detail he needs and has never failed to take his time to educate me further.  Today's result: stop Pulmicort treatment for the summer, Riley's lungs are clear!  Thank you, thank you, I will.  Second appointment of the day at 11 am, we move on the Occupational Therapy (OT) with  the beautiful and competent Miss J.  She is amazing and I learn from her each time Riley and I sit on her mat.  I am grateful for Miss J.

Somehow during the day with little thanks to me, Ronan has a play date and even tennis lessons.  Daddy is looking out for him!  Riley has many more activities on his regularly scheduled Mondays.  The Chiropractor and Horseback Riding are still left.  However, his little body doesn't always cooperate.  As soon as he made it home and began lunch he began vomiting.  Unfortunately, he cannot warn us and this is an event in itself.  Vomit is one of the things that pushes my buttons due to our history... more on this later.  Eventually he seized for 4 minutes... oh, must remember to log this event.  Cancel everything!  That's how it goes.

Tomorrow is the dreaded IEP.

This was not a day to write home about.  It was a day in the Life of Riley.  More on that later.