Riley's Week

Cheating the Stander

Dr. Steve's regular Monday with Riley... welcome Dr. Eric too.

Another day hanging out in a doctor's office for Ronan.  Thank goodness for the DS!

Riley sings to Miss Claudia.   She was in Romania far too long and he's very excited to have her back.

Waiting again... hey, get your own DS.

Naples Equestrian Challenge article today on

Magic of changing lives: Naples wine festival, pros team up to teach kids tricks

It's been a pretty good week... Stacie Wiesenbaugh

Got Respite... Go Fly A Kite

We are so blessed to have respite now.. through the Partners In Care program we are able to request about 150 hours a year.  I had lined it up awhile back hoping John and I could dive together this past Saturday.  Diving, however, is out for John at the moment due to his ear infection.  So, Riley happily settled with Nurse Debbie, John, Ronan and I headed to a secluded beach off Lover's Key with our kite.

It never escapes us that we can never take family outings as other families do.  Riley is always left behind or the outings must revolve around Riley's needs.  But, we have a son who needs these adventures and off we went.  Discovering he was required to wade through a lagoon to arrive on the beach upset Ronan at first, but by the end of the day he was the first one charging in ignoring all the crabs and jumping fish.

We are all special... by Stacie Wiesenbaugh

New potentials: Rethinking disability through my sister’s eyes

New potentials: Rethinking disability through my sister’s eyes

Seizing Logic

October 19, 2008

Seizure's did not come every day or even every week during Riley's sixth year.  When a seizure did arrive, it was an Event.  Occasionally it even meant calling in paramedics and a trip to the ER to put an end to Riley's convulsions when our own medications and interventions were not enough to help him.

One day, driving my boys from one appointment to another, Ronan observed a Walgreens drugstore.  He explained to me as we drove by the landmark in his matter-of-fact three year old manner: 

“If I go to Walgreen’s, I don’t have seizure’s!” 

He had put it all together!  

He recognized Walgreens yet the McDonald's next door to it went unnoticed.  Not many three-year olds have seizure in their vocabulary or need to consider how to manage the disorder.  I laughed.  I cried.  How sad that he had to understand seizures.  How amazing that a three year old was planning how not to have seizures.  

 We are all special... by Stacie Wiesenbaugh

NEC Horse Show

Naples Equestrian Challenge Horse Show, Friday June 30, 2011.

Ronan receives an award with the help of Nick, also Riley's favorite horse to ride.

NEC staff and volunteers have given the typically developing siblings an amazing opportunity to participate in the program and to understand the importance of the program.

Ronan Invites You to NEC

This week Ronan has his turn with the horses at Naples Equestrian Challenge at their inclusive riding camp.  As a toddler, Ronan would watch from the fence as Riley took his weekly riding lesson and ask week after week, "Where's my horse, Mommy?"  Now Nick and Pick A Spot can be his horse too.  Riding camp is open to regular riders, rider siblings and our friends.  He can finally be a part of this wonderful program too.

One of the wonderful moms involved with the program brought Ronan home yesterday along with her girls for a playdate.  Everybody into the pool!  Her special needs daughter, Jaclyn, was drawn to Riley.  She reached from her mothers arms to take Riley's hand.  It is not often other children wish to interact with him and the moment melted my heart.  She tried again and again to hold hands with him but discovered he allows only brief contact.  Not on purpose, but the spastic quadiplegia causes him to snatch his hand back before any real connection can be established.  It was a beautiful moment for me even though the hand holding only lasted a split second!

Today I would like to share blog posts that spoke to me:
Kidz, A Special Place for Special Needs lists issues special needs parents appreciate.
La Dulce Vida wrote an "Ode to My Sisters... You" and I would like to share with the other special needs moms who wander by my site today.

Thanks so much for stopping by!
We are all special... by Stacie

Father's Day Cards All Around

The boys and I took advantage of an event with PIC while John was working very long hours.  Off to Hope Hospice in Fort Myers for pizza and art. 

Surely all of you are jealous that we spend our social time in a hospice conference room!  It is not exactly social since all of the other families attending spoke Spanish only, if they did speak English they were not going to share it with me.  No, not exactly the outings I envisioned with my children.  Nonetheless, I am grateful.  I do confess I may not make the trip again unless necessary before the evaporator is fixed on the jeep.  OK, I'm actually about to make it again and farther for Riley's PT and a wheelchair repair.  The boys made no complaints as the sweat dripped off them and a thunderstorm threatened to soak us all.  The relief of having someone capable feed Riley for just one meal motivated me to make the drive. 

As I ate quietly and watched the boys, I contemplated how important even these few moments are to me.  Without having these few moments of occasional respite somewhere beyond the parents spelling each other helps maintain sanity. 

Riley was so happy to be with Miss Debbie P. for awhile he laughed heartily for several minutes.  A group of FGCU students, belonging to P.A.T.C.H. (Project Art Therapy For Childrens Health, coaxed Ronan to take on a paint project.  "What shall we do?" asked Juan.  "A father's day card," Ronan answered.  Knowing he already had made a card for Daddy I was curious.  Soon it took shape and receiving some help from Maria he had a wheelchair placed prominently on his artwork.  "Riley needs some help with his card," Ronan explained. 

Quite the oversized card... so I leave you to fill in the missing letters.

Ronan is always looking out for his family.  Such a burden to carry for a six year old.  Yet, to Ronan it is not a burden, he is simply fulfilling his place in his family and does it joyfully.  There was no resentment, no frustration, no sadness that he had to fill this void for both his brother and his father.  I sensed only satisfaction from Ronan.  A few feet away Riley laughed again.

No, definitely not the family time I imagined for my future.  It has its sadness.  But we each find some gratification as well, I still have two magical boys and an amazing husband.

We are all special... by Stacie

Note: P.A.T.C.H. will consider events.  For more information contact Marisa at Meschrei@eagle.fgcu.edu.  I also have a few pamphlets to share.

My brother is special, and it’s not because of his disability – The Express Tribune Blog

My brother is special, and it’s not because of his disability – The Express Tribune Blog

Thank you to author Mehreen Asghar for sharing this touching post! "I like the idea of this blog as I am a sister to a special needs child. Let me know if I can contribute in any way at all. I wrote an article about special needs children a couple of months back in a newspaper blog in my country."

You can find more from Mehreen on her blog http://the-perfect-line.blogspot.com/.

The Kindergarten Graduate

My sons, The Optimist Awardees

How do I explain this confusion I feel today?  Ronan has been selected to receive an outstanding student award this afternoon from Optimist International.  I am about to leave for the Optimist International Youth Appreciation Ceremony at Bonita Springs Preparatory andFitness Academy.

I am so proud of Ronan for being selected among his peers for this recognition.

This also causes some sadness.

Last year at this time Riley received the same award at Rayma C. Page.  How did Riley merit this award.   Am I not giving him the recognition he deserves?  I felt very disturbed last year at this same time when Riley received the same letter.  What kind of mother is not overjoyed when her child is recognized for his perseverance and attitude.  I did not celebrate this award.  I did not pat Riley on the back and talk to him about how great he did.  I did not give him a gift or special treat for his efforts.  How could I when he never noticed he was singled out in this manner.

Now I go to a special ceremony to celebrate Ronan in a manner I was incapable of celebrating Riley.

I have tears in my eyes now and I must pull myself together and go be the supportive mom I am supposed to be.  But at the moment I dislike myself intensely.

How do I rectify these two awards to two very different children?

How do I really appreciate the achievements of both my sons?  I appreciate them, unfortunately when it comes to Riley I still have a long journey to make.  Not having to make that same emotional journey for Ronan certainly leaves me with some disappointment in myself.

Not now, heading to a ceremony and it is time to not revel in my own life disappointments.  Remember Mommy, be fully present and appreciative of the special needs child and the typical child.  I am Mommy and it is not fair for me to be wallowing.  Time to be fully present for my children.

Clearly this award would not apply to this Mommy...

The Optimist Creed

Promise Yourself ...
To be so strong that nothing can disturb your peace of mind.
To talk health, happiness and prosperity to every person you meet.
To make all your friends feel that there is something in them.
To look at the sunny side of everything and make your optimism come true.
To think only of the best, to work only for the best, and to expect only the best.
To be just as enthusiastic about the success of others as you are about your own.
To forget the mistakes of the past and press on to the greater achievements of the future.
To wear a cheerful countenance at all times and give every living creature you meet a smile.
To give so much time to the improvement of yourself that you have no time to criticize others.
To be too large for worry, too noble for anger, too strong for fear, and too happy to permit the presence of trouble.

Optimist Mission
By providing hope and positive vision, Optimists bring out the best in kids.

Optimist Vision
Optimist International will be recognized worldwide as the premier volunteer organization that values all children and helps them develop to their full potential. 

We are all special... Stacie

Little Mr. Tie-Dye

Ronan rose earlier than usual and donned a tie-dye shirt, he would not be Ronan without it.  He has been counting down to this day for two months.  This is the day he and my mother, Kappi as he calls her, fly to New Hampshire.  I received an early Mother's Day Card, a butterfly and a great big kiss and hug and wave good-bye. 

I felt the tears welling as John pulled the car away.  Ronan's huge smile never ceased.  He has not the slightest trepidation.  Yes, I am hurt and will miss him dreadfully for the next five days.  But something is oh so right about it.  I also just received the most wonderful mother's day gift and I have had it for quite some time, but sometimes I need a little reminder.

My son is happy.  My son is confident.  My son is ready to live his life.  Riley will never experience these things as Ronan can.  Riley has been disappointed by life... that is not to say it is necessarily all bad... Ronan on the other hand can share in his brothers experience and still have hope and happiness. 

Perhaps this vitality of Ronan's is a gift that Riley has given to all of us?  Perhaps John and I have learned to live beyond this experience ourselves and it shows in our youngest child?  Our life experience and outlook has changed so dramatically since Riley's birth that we approach life radically different than we may have done.   

To see Riley, life somewhere went very wrong.  To see Ronan, life has gone very right.

Today I share a post from Bird On the Street... it felt as if she put my own thoughts as a special needs parent into words.

We are all special.... by Stacie Wiesenbaugh

Masquerading

At the age of three, Riley began school due to the necessity for intervention services through IDEA.  Once Riley entered the school system's Exceptional Student Education (ESE) I had the opportunity to focus on Ronan, just a year old at the time.

Santa Cruz Island Sea Lion's by John Buck circa 2002.

Something happened that I had not experienced in three years; I could freely accomplish a task without the production and worry for Riley's well-being.  Ronan became my constant companion .  It sounds a little more freeing than it really was because my mental state never stepped away and I was truly exhausted and listened closely for the school calls to my cell phone.  However, this could be valuable time for Ronan  I signed him up for Music Together an entire two miles away from Riley's classroom.  Eventually we ventured even farther for Kindermusic at Naples Philharmonic.

Is there really such a creature as a "typically developing sibling?"  How can that be possible where the childs' home life and family completely revolves around the needs of another.

How strange these sessions were to me.  At that time we still took turns to get Riley through every moment of the day and night.  My eyes were so tired I viewed the entire scene through a blur and it took every bit of strength I had just to get us there.  My child laughed and played alongside other children.   I had so little left in me it was a challenge to appreciate those very precious moments of my son's joy.

Strangely, the other parents in the room did not seem to notice that we had nothing in common with them.  We were masquerading.  We were pretending to be a normal family for those very few moment of our lives.  We were so far from the family we appeared to be.

This feeling of pretense has never left me.  Without Riley by my side I am committing a deception on all those around me.