Appointments and Illness

There is so much I have planned for this blog and so much I want to say... However, there are a few problems getting in my way: primarily, time and energy.

On Monday Riley had his annual pediatric check up.  He did really well.  He is always so cooperative and pleasant.  This year, we opted to give him a flu shot.  Yes, it's controversial.  However, caring for a sick child with multiple disabilities is one of the saddest and most difficult experiences a person may ever encounter.  Trust me on this.  I've done it and I don't like putting Riley or any of the family through it if it can be helped.  A sick typically developing child may be challenging but it is nothing compared to going through it with special needs.

Our pediatrician is wonderful.  One thing we always cover is the well-being of Riley's parents - yep, that's John and I.  We ride an emotional roller coaster.  This is another on-going subject that I have been avoiding.  Admittedly, we are challenged by our role in life and being 9 years behind.  I do not actually care to delve into this today - in fact, I am unsure when I care to get into this.  For now, let's leave it at the fact that being a Special Needs Family is not particularly easy.  The conversation went on that some do handle it and some do not - it seems to be some individual parents are stronger than others.  I object.  I believe that it is far more than simply can you handle special needs or not...

The special needs community frequently uses the phrase "a bullet is a bullet."  Really, I do not think all bullets strike the same.  When your child can get him or herself to the table eat unaided, I do not believe the bullet did the same damage as all the others.  Fine, object with me.  This is my observation and this is how I feel. Perhaps all bullets are not created equally.

A few hours after a good report with Pediatrician, Riley came down with a flu.  As usual, joke is on us.  It has been a rough couple days.  Riding Monday evening had to be cut short as he began to whine as he was jostled around.  I happened to be side-walking with another girl in the class as I happened to be a little taller to be alongside her horse and the other available volunteer could reach Riley: my very first direct experience with any other special needs rider.  This was another surprise to me.  The rider also had multiple disabilities, and she was considerably older and large than Riley.  I had to mentally brace myself for the next half hour of hard work.  To my great surprise, she sat up herself and held her reigns.  I was simply there for safety.  No leaning on me.  No sneezing on me.  No pushing arms and elbows into place for proper weight-bearing.  This was unbelievably easy.  Could I possibly say to her family, "Wow, she's easy to work with!"  Somehow, I doubt they would agree.  Could they possibly know that I found side-walking with their child to be a breeze?

Oh dear, that paragraph got all sidetracked!  Where was I going with that?  Riley was sick.  And was he sick.  I was replaced as a side-walker to remove Riley from the ring.  Gathered up my people: my Mom, Ronan and neighbor Annie who now volunteers helping to groom and tack while earning her high school community service hours.  Then on home we went.  Riley and I were up and down throughout the night to keep his fever under control and attempt to stop the incredible leg tremors - oh, I know I've talked about tremors here and there in this blog - I better tag them because they're important.  When we weren't under the fan we were in my bed, my arms wrapped around him reaching on each side to pull up on the toes of both feet in an attempt to calm the tremors, but unfortunately adding my heat to his in the process.  Any wonder why some parents keep their special needs children apart from the rest of us... illness is truly horrible and this wasn't even a particularly bad event.

A rare event: Riley napping, and alone in his bed yet.

This has happened perhaps five times at the most in his lifetime.

Couple of posts to share today...
A post on respite for families - it's a lifesaver, I promise: Respite: An Interval of Rest by Special Needs Ministry.
To my great relief I am not the only parent deserving of the title - Mother's from Hell.

There was more to say, but my time is up.  At 3:30 pm my day is done as the end of the school day has arrived.  Well, I hope there aren't too many typo's and such, because this is a blog and I'm moving on with my day.

We are all special... I think... though I complain and want to compare bullets with you... by Stacie Wiesenbaugh

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.

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.

Here It Comes Again

My need to document proves that "crazy woman" is still here.  Cannot imagine that this subject will be found covered in many places as the subject today is rather distasteful.  Oh right, I remember now, my entire subject is rather distasteful.  I will make this rather brief, because mostly I am simply tired today.

After Riley had a good morning, he was disinterested in his lunch.  If you know Riley, you know he has a tremendous appetite.  It wasn't long before he began vomiting.  Vomiting is stressful for all children, however having a typically developing child and a special needs child I can tell you with certainty that it is entirely a different experience with special needs.  There is no warning.  It is projectile.  It is frequent.  It will be everywhere - everywhere! on the walls, down your bra and panties, in his hair, soaked in the carpet, on the opposite side of the house... you may be getting the picture but I'm not so sure.  After  cleaning up as fast as possible, stripping everything, starting the laundry machine as it will be going continually, attempting to cover everything in towels, washing him and getting the child upright in an attempt to quiet the next episode it will begin again.  And again and again throughout the day.  By the way, this really requires two adults be present to make it happen at all.  Fortunately, John was home and he moves fast.

There was an indication the evening before.  Leg tremors.  After these episodes the leg tremors really take over.  In my arms, I support him upright on one side and with the other attempt to pull the balls and toes of both feet toward his shins.  Barely four inches remain between shins and toes once the tremors are relieved.  Then we wonder if this effort to relax the tremors puts added stress on the abdomen.  Release the legs.  These tremors increase to.... my guess, about 40 beats per second - only because I cannot imagine it being higher than that.  His feet move like a film in high speed when the film has spun free from the reel.

Move into "tonic posturing" and eventually a seizure.  I think I will reserve those for another day.

The most amazing part of all this is Riley's sweetness!  By the end of the evening he has lost all of his night medications which means sleep will be impossible for all of us.  Medications and sleep drugs will most definitely be a frequent subject.  The moments in between the vomiting and severe tremors... would you believe he smiled at me and talked in his sweetest manner. 

He was positioned all night so that I could maintain a hold to relieve the tremors.

It is so difficult to see my child experience this.  I suspect it is even harder for John when I catch his expression.  These episodes are also one of our hot button issues because of the history - naturally there will be more on this later.

Does anyone else out there experience a similar situation?  It's still a challenge to get through.  To anyone who actually bore through this post... thanks for listening!

The picture below is one of the Ronan's family portraits that teachers insist upon.  Do they know the heartache this little exercise brings?

Also today please note this piece of news which will bring more difficulty to our lives... Florida Governor cuts disabled programs.

By Stacie Wiesenbaugh