Friday, April 29, 2011

Open the Floodgates


Insulating ourselves against the outside world became a survival necessity during Riley's early difficult years.  Every movement and noise would send him into a meltdown.  We used ever method we could to shut the world out protecting Riley and ourselves against the intrusion of sunlight, noise and people.  The blinds remained closed all day.  A completely ignored sign requested knocks before doorbells and radios, televisions and conversation remained hushed with the goal of helping Riley learn to sleep.

When I accepted CMS recommendation to include our family in the pilot program Partner's In Care (PIC), under the umbrella of Hope Hospice I opened the floodgates.  Suddenly our home was overrun by volunteers, nurses, case workers, music therapists and even personal care service professionals.  It was overwhelming after closing the world out to suddenly have constant visitors and questions.  Today was no different.

There were moments of recoil and panic I sensed after that one "yes" I gave to our CMS Nurse Care Coordinator four years ago.  Fortunately, there have been many more moments of gratefulness for all good these people and PIC have brought to our lives. 

To other special needs families still holding out:  I understand all your reasons and they are valid.  When you can though, please open the floodgates and let the sun and noise come back into your life.  You will be happy you opened those gates.

Anyone else catch the Royal First Kiss this morning.... we managed between Ben 10 episodes:-) ?
Readers, please feel free to share any experiences you have had yourselves regarding your special needs experiences.  I would love to share them... email me at oceanantiquities@embarqmail.com.

IEP Meeting Strategies by Wrightslaw

http://www.wrightslaw.com/advoc/guest/Kerr_Meetings_Progess.htm

Wednesday, April 27, 2011

The Blog Designer Network

The Blog Designer Network is a wonderful resource for bloggers! Take a look.

Phoebe and Valerie

Songstress "Phoebe Snow dies at 60" is about all I could gather from the brief obituary in our local newspaper.  John brought Phoebe Snow to my attention yesterday.  For John, she brings back the love of music he shared with his father who introduced Poetry Man to him as a child.  John had followed her career and adored her music.  To me, she is a model of strength to emulate.  Her career was quickly derailed giving birth to her daughter, Valerie.  Despite the challenge, she dedicated herself to Valerie,  who suffered a traumatic event at birth leaving her with multiple disabilities.  Phoebe did this at a time when disabled children were often institutionalized and forgotten.  Their story is shared below and this post title on a YouTube link.  Listen here to Take Your Children Home.

take your children home - phoebe snow ('74)

Phoebe Snow: Back and Better Than Ever!

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

Freedom Waters Celebrates 5 Years of Service

Monday, April 25, 2011

Sunday, April 24, 2011

Koreshan Drums

Earth Day called us to Koreshan State Historic Site.  The colony established on this land believed our universe to be concave.  What took me so long to get there?  My world is inside out too! .  Once intended to be a New Jerusalem, the park is idyllic.  Of course, on this day "idyllic" depends on just how much you enjoy drums.  Riley loves drums!  (Although they do not quite measure up to Blues in his estimation.)  Miss Debby found a perfect spot beneath the palms where we could view the drum circle and have plenty of room around us.

Drum circles are the perfect place to bring Riley.  He participates readily and finds an accepting community with the regulars.  We brought our adorable folk drum from Riley's godmother Sue and gave it a sound beating.  As we drummed, nowhere near the beat, that would be my fault, familiar faces emerged from the crowd. 

Donna Lee appeared and claimed Ronan as a dance partner.
Mr.Mike takes a few minutes to play with Riley.
Miss Angela finds us.  Apologies to Mr. Bill - missed you with my camera.  And then Mr. Anthony claimed Riley to dance in the circle.  Perhaps some of you know Anthony for leading the Sunday morning Special Needs open gym at Gymnastics World in Naples.  Clearly he's great in that role!


Then, hiding behind Bills shirt, one of us had heard enough.

Wishing you all Happy Easter.  Stacie Wiesenbaugh

Shaky Shaky Easter

Spent all night going back and forth between my bed and Riley's.  Oftentimes I hadn't even reached the pillow before I started back again to his bed.  He needed so much help to settle.  There were coughing fits, he had pushed himself into the hospital bed bars, twisted his legs into a pretzel, needed a fresh diaper, sweated through his shirt.... He actually took to yelling for me a couple times. 

Wow, this is new.  Yelling for me.  How great is that.  He has a new skill!

This morning, I have had so little sleep I am shaky throughout my whole body.  Stopping, sleeping in, telling him to just watch a show... none of this is an option.

Pictured above, Ronan rolls dough for Keflie cookies (John's family recipe).

Happy Easter.  Stacie Wiesenbaugh

Saturday, April 23, 2011

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.

Friday, April 22, 2011

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.

Tuesday, April 19, 2011

Keeping Hope Alive - by Lynn Parsons

As the mother of two adult children with special needs and a special educator, I've seen and done a lot. One common concern among parents, especially those with more significant disabilities, is how to keep hope alive. I suggest a three part formula, including health, information, and stories.

You've probably heard before that you need to take care of yourself. But a child with multiple needs can drain your energy. When you're taking care of a child with special needs, you must take care of yourself. If you aren't getting enough rest, seek some respite care. Try to eat the most nutritious food you can find. Exercise in any way that meets your schedule. Pray. When your life is in a shambles, prayer can bring you a peace and reassurance that you can find nowhere else.

Next, you need to be armed with information.  Learn all you can about your child's disability, including proven treatments. Beware of anyone claiming a miracle cure. If you are unsure, check them out with the Better Business Bureau.

Talk to other parents and listen to their stories. Don't focus on how they didn't get the services they expected or the hardships they've faced. Look for stories of hope and success. Here's one to get you started:

When my youngest child was in first grade, her teacher told me my daughter wouldn't learn to read. I did some investigation, and taught her myself. She still has her disability, but is now finishing her freshman year at a major university. She has no accommodations or modifications. This will not work for every child, but you can believe that your child can live his or her best life. As a special educator, I've seen children achieve far beyond expectations. While no one should gamble on false hope, no one knows the future and what blessings await your child. Remember that there is an army of professionals out there who have dedicated their lives to helping children like yours.

Need resources? Check out my website at http://lynndparsons.com and visit the parent page. You may also want to check out my book, which will be available May 6, 2011. "(dis)Abilities and the Gospel: A Guide for Families and Church Leaders" helps families of faith include people of all ages with disabilities. Information about how you can get an autographed copy can be found on my blog at http://lynndeniseparsons.blogspot.com.

Lynn Parsons, MS
Educational Diagnostician
Hurst Euless Bedford ISD

Monday, April 18, 2011

Licking Honey - Donna Lee Guest Post

When I arrived to Naples, 3 years back this April, I immediately searched for a place to help out.   Living in Israel for most of my life, it was very important to me to volunteer and give back to the community.   I am blessed with 3 beautiful children, a wonderful life and feel the need to share my good luck and energy with others who need some assistance or comfort. 

One afternoon volunteering for Naples Equestrian Challenge I  helped one mother getting her son out of the car seat and ready to mount Bailey, one of Riley's favorite horses.  And this is how I met Stacie, Riley and little Ronan, who, today, is now my biggest helper.

Below, Sunday April 17th Om and I visit Riley:

In Israel  I was fortunate to work at a very unique school for children with special needs. Its name
is Beit Izzy Shapiro and is in my hometown, Ra'anana.  This is where I studied and gained much 
knowledge and understanding about cerebral palsy, autism, down syndrome etc. But most of all,
I witnessed how it affected the parent's lives.  We often had workshops, which included a parent describing what her/his life is like, what an average day consisted of.  One mother, who's adorable little boy, was in the classroom I worked in, spoke and brought tears to all our eyes.  A religious American woman, who had 5 children, including this beautiful curly blond, big blue-eyed boy, who was lacking not hours or days of sleep, but months, described her average day . This mothers talk had a HUGE impact on my life and awareness.

I never complained about my lack of sleep again, or daily challenges with my little ones. My life was a
breeze, " I was licking honey", as we say in my country. (This phrase is very complex, here is a Jewish tradition.)

So, getting back to my buddy Riley, the first time I saw Stacie, my heart went out to her.  I approached
her, offering my assistance .  Knowing how hard it is for parents to accept, lucky enough, Stacie was
tired enough to say YES!!!!.  For me, that is an honor, because any parent who feels safe enough to 
allow me to hold and handle her most precious cargo, I feel special.

More to come.............

B'ahava
Nameste, 
DONNA LEE

Cerebral palsy comic!

Sunday, April 17, 2011

Diapers are everything and Day Number Six


What goes on with Riley's healthcare coverage is inexplicable.  A few months back he was granted Medicaid out of the blue.  An application on his behalf had not been made in nearly a year.  Don't mistake me... I'm grateful to have it for Riley.  Medicaid has been crucial to his well being.  And oh so happy that Medicaid finally sees fit to provide diapers.  I simply don't understand why they give it to take it away three months later when the next application really was due.  Back to Title XXI... I hope.   Now Title XXI will share diapers too.  It's all ok.  Just strange processes and clearly an ever dwindling budget.  Have diapers... I'm satisfied. 

Poor little Riley is on day six of the most recent illness.  Tomorrow is all about therapy.  Hope that happens.  He feels much better at the moment.... due to Miss Donna for dropping by for massage.

Saturday, April 16, 2011

RSV, Not just a danger to preemies

Bonita Springs family still on guard to protect their son, now 5

Sunday, November 25, 2007
Stacie Wiesenbaugh thought she was just having a bad day on Aug. 27, 2002. Maybe a little cold, she thought. A touch of the flu, perhaps.
Barely eight-months pregnant with her first child, there was no way she could be in labor already. Not at 32 weeks.
Right?
Wrong.
Wiesenbaugh already had called in sick that morning to her job at the Library Foundation of Los Angeles. When several hours passed and she still wasn’t feeling better, several frantic calls to her doctor followed.
“Something’s not right,” Wiesenbaugh said. “Something is definitely wrong here.”
The doctor told her to get to a hospital right away.
*****
Wiesenbaugh’s child was born prematurely and placed under emergency care.
The boy, named Riley, came through it. And now he’s 5 years old.
But his infant and toddler years have presented one challenge after another for the young family.
Even so, with all that has gone wrong with Riley, one problem the family managed to avoid was having him contract RSV. But it’s been costly for them to provide Riley the preventative treatments.
Respiratory Syncytial Virus accounts for more than 125,000 hospitalizations each year, and is the leading cause of infant hospitalization in the U.S.
Though the condition can be deadly, it is preventable if the symptoms are caught in time.
Problem is, parents can easily confuse the symptoms of RSV with those of a common cold.
*****
On that day in Los Angeles in 2002 when Wiesenbaugh was trying to get to the hospital, nothing would be easy.
Her husband, John Buck, was stuck at work, and it would take him more than an hour to fight his way through the congested L.A. traffic to get to her.
In the end, she wound up calling a cab.
“And then, to make matters worse, the cab driver couldn’t find the place and barely spoke any English,” said the Bonita Springs mother of two. “I couldn’t believe it was happening.”
When the communication barrier was finally hurdled, off to the hospital they went: Wiesenbaugh and her confused cab driver. Time to fight the L.A. traffic once more.
Although it’s of little comfort now, Wiesenbaugh had enjoyed a remarkably healthy pregnancy up to that point.
She ate right, exercised dutifully and stayed away from all the things she was supposed to stay away from.
No booze, no cigarettes, no anything that could negatively affect her unborn baby.
So her first inkling that something might be wrong came during the emergency C-section at UCLA-Santa Monica.
“The operating room filled up so quickly it was amazing,” Wiesenbaugh said. “They listened to his heartbeat and it was obvious that he was in huge distress. The (medical) team rushed in and took him. I didn’t even get to see him and I didn’t know what was wrong. It was just devastating.”
When they finally wheeled her in to see her newborn baby several hours later, premature little Riley was much smaller than most babies. Just four pounds, eight ounces.
And he didn’t look right.
“Preemies are very distinct looking,” Wiesenbaugh said. “There’s no baby fat on them at all. Riley didn’t look like an infant at all – he looked old.”
But that wasn’t all of it. Not by a long shot.
*****
Riley had suffered a massive brain hemorrhage.
To make matters worse, his kidneys weren’t working properly, and at one point, Wiesenbaugh and her husband were faced with the unenviable task of signing a DNR _ Do Not Resuscitate _ order.
But Riley made it through.
Today at age 5, Riley is a special-needs child.
He is largely non-verbal, hard of hearing and has only limited peripheral vision. Because of the nature of the injuries to his brain, he has an extremely difficult time processing the world around him. There’s a shunt in his head to transfer excess cerebral spinal fluid to his abdomen.
Riley’s mother and father moved their young family to Florida about a year and a half after he was born, seeking whatever emotional comfort they could from family and friends.
Now, Wiesenbaugh wants to offer comfort to other young mothers.
*****
Despite Riley’s medical troubles, his family has managed to keep him, while at risk for RSV, from contracting it.
“It’s a very common virus that we all have the potential to get, but usually we just get a cold,” said Dr. Michael Light, a professor of clinical pediatrics at the University of Miami. “The problem is that babies have the potential to develop bronchiolitis from it.”
Light said all babies contract RSV at one point or another – it’s not a condition unique to preemies, like Riley, as is commonly thought.
“The majority of the time, it stays in the nose, not the lungs,” he said. “It’s when it gets to the lungs that there’s a problem.”
RSV season stretches from November to March in most parts of the country, but Florida has a season that lasts year-round, generally kicking into high-gear around August, Light said.
“It’s the peak of the season now, but because of the humidity here, it lasts all year,” he said.
RSV is generally transmitted by hand, Light said.
“When somebody touches a surface with RSV on it, and then touches a baby, it goes in through the eyes or nose,” he said. “The most useful prevention is simple hand-washing.”
But there’s also something of a wonder drug out there, Light added.
It’s called Synagis, and it’s administered at the first signs of RSV.
Unfortunately, it’s also expensive – about $1,000 for each monthly injection.
*****
To keep him as well as possible, Riley received Synagis injections for six months, and Wiesenbaugh had to pay the $6,000 fee up front with her credit card, only $3,000 of which she eventually got back from insurance coverage.
“Not only that, but for some reason they didn’t have Synagis in Los Angeles, so I had to call a pharmacy in Washington, D.C., have them ship it to a pharmacy in California, and then have them ship it to my doctor,” she said.
Wonder drugs aside, prevention is the key to avoiding RSV, Wiesenbaugh said.
“If you have an at-risk child, be careful of the contact the child has with family and caregivers,” she said. “If anyone’s around your child, be sure to have them wash their hands. Keep away from crowded places like malls and play centers and from other kids with cold symptoms.
“And don’t have any qualms about telling people who want to touch your beautiful young child, ‘Hey, you can look, but please don’t touch.’”
Sadly, that isn’t much of a problem when it comes to Riley, Wiesenbaugh said.
“A lot of people won’t even look at us – they’ll look right through us,” she said. “They don’t want to identify with the fact that this could happen to their own child, and I don’t blame them for that. I certainly didn’t want it to happen to my son.”
A few years after Riley’s birth, Wiesenbaugh and her husband welcomed another child into the world – a healthy baby boy named Ronan who will turn 3 in December.
“He’s healthy and he’s energetic,” Wiesenbaugh said with a laugh. “Boy, is he energetic!”
---
For more information on how to prevent RSV, visit www.RSVprotection.com.
Born prematurely, Riley Bush, 5, suffered a number of complications and according to his doctor, was considered high risk for the breathing disorder RSV. As a precaution, his mother, Stacie Wiesenbaugh made sure he had preventative RSV shot called Synagis despite inconsistencies with her insurance company which sometimes caused major problems.
Photo by MICHEL FORTIER, Daily News
Born prematurely, Riley Bush, 5, suffered a number of complications and according to his doctor, was considered high risk for the breathing disorder RSV. As a precaution, his mother, Stacie Wiesenbaugh made sure he had preventative RSV shot called Synagis despite inconsistencies with her insurance company which sometimes caused major problems.

---
Contact John Osborne at johnaosborne@hotmail.com

Thank the State for Rescinding Provider Cuts

Dear Friend,
Last evening, the Legislalture moved to fill a $174 million deficit in APD's budget. As a result, Governor Scott has agreed to rescind cuts to payments to providers that serve a critical role in supporting Floridians with disabilities and their families.
This is a very positive development for Florida's families, and it's important to let policy makers know that they've done the right thing. Our friend Susan Goldstein has created a simple form on her site, FFDD News, so families can send a messag to the Governor and Legislators. Please take a moment to visit http://www.ffddnews.com/contact-your-legislator.php and share your thoughts with our state's policy makers.
If you would like to know a little bit more about the situation and the resolution that was reached last night, check out the Governor's press release below.
Yours,
The Family Cafe


Providers To Get Full Rates Restored,
At Least For The Moment
GOVERNOR RICK SCOTT LIFTS EMERGENCY RULE FOR APD
Reaches deal with House and Senate to release funds for services
Tallahassee, Fla. – Governor Rick Scott today announced an agreement with the House and Senate that would provide an infusion of cash that will prevent the Agency for Persons with Disabilities from discontinuing services.
“I thank Senate President Mike Haridopolos and House Speaker Dean Cannon for joining me to protect the community APD serves, and I applaud the hard work of the staff at APD for finding a solution to this problem,” Governor Scott stated. “After years of deficit spending that put these services at risk, I’m glad that we’re taking steps to finally bring responsible financial management to this agency and the people they serve.”
After an Inspector General report disclosed that the agency would likely run out of cash to pay for needed services in early May due to an unprecedented $174 million budget shortfall, Governor Scott issued an emergency order stretching funds through the end of the fiscal year to avoid any cutoff of services.
The Governor’s Office worked closely with the Legislature to find a way to provide immediate funding so that the Emergency Order could be lifted and to find a long term solution to the problem. Governor Scott also continues to work with the Legislature and members of the disability community to develop strategies to prevent future shortfalls in APD's budget.
Today’s deal lifts a hold on approximately $30 million that will cover the agency’s provider costs through the end of the fiscal year.
From: Governor's Press Office

1332 N. Duval St.
Tallahassee, FL 32303
United States

Friday, April 15, 2011

Naples Equsetrian Challenge Kentucky Derby Party, Join in the Fun

Come join in the fun for the 137th running of the Kentucky Derby and help support Naples Equestrian Challenge!
Saturday, May 7 · 4:00pm - 7:00pm
Noodles Italian Cafe & Sushi Bar
Mission Square Plaza, 1585 Pine Ridge Rd. #5
Naples, FL

TICKETS: $25/person in advance, $35/person at the door. Includes Derby-style buffet, complimentary mint julep and cash bar.

PRIZES: Best Hat (for the ladies) and Crazy Pants (for the gents). Play the Derby 50/50 Raffle.

JOIN THE OWNERS' BOX! Sponsorships Available at three levels: $2,500, $1,000 and $500. Sponsors receive priority seating for four and are randomly assigned to a horse within their Sponsor Level, with prizes for Win / Place / Show.

TO PURCHASE TICKETS OR TO JOIN THE OWNERS' BOX: please visit www.naplesequestrianchallenge.org or call 239-596-2988.

Proceeds to benefit the programs at Naples Equestrian Challenge for children and adults with special needs.

Survivor’s Villain Russell Hantz Talks Give Kids The World

Survivor’s Villain Russell Hantz Talks Give Kids The World

radical ramblings and thoughts of a southern girl: Hope is a floating.....

radical ramblings and thoughts of a southern girl: Hope is a floating.....: " Beginnings are scary. Endings are usually sad, but it's what's in the middle that counts. So, when you find yourself at the begin..."

Day Number Four


This is a reminder of the reason I blog.  This blog is not about bemoaning our situation.  It is intended to give those just on the outside of a special needs family a glimpse inside.  Hopefully, I may help give a little insight into what may be behind all that frustration, hopelessness and the closed door that they may be encountering with another special needs family.

Today it is time for Riley to return to school.  He recovers from illness so much faster than he used to, but it is still quite challenging.   He is not 100% and I am certain to hear in his report for the day that he was sleepy, snotty, coughed and was not himself.  He is being himself, just the self that is mostly reserved for home.
Today he needs to get back to activity and stimulation that I cannot provide.  Also, I need a few hours without him in my arms.  My left forearm aches from the weight of him.  I feel the rounding of my spine from hugging him to me.  A few hours rest before launching into the weekend with Riley will help it be a much more pleasant weekend for all of us.  Errands without Riley would be helpful as well.  None of this happened.  Received a call from school before 10 am while on the way to run errands; he's running a fever and must go home.  Thankfully, Jamie and Alberto at the school are willing to load the wheelchair with good spirit each time I arrive without the ramp which allows me to handle it myself.  I am very grateful that they will take the time and energy and always with kindness and gentleness.  Riley has returned home and is resting a moment... not very quietly though, lol.  But then, he wouldn't be Riley if it was quietly.  Even when he's ill... he is still the sweetest child imaginable.

Still need to get in the laundry for those sheets of Riley's.  Not one set today but two.  We have the hardest working washing machine to be found outside of a laundromat.
 Riley art work from ESE class above.

Thank you to those in our daily lives willing to spend a few moment on my blog.  It means a lot to me.  Today I am grateful to Maria at the pharmacy for the time to see what it is all about here at Riley's Smile!  Thank you Maria.