Category Archives: Taboo

Senate proposes sweeping overhaul of disabled care | The Florida Current

Senate proposes sweeping overhaul of disabled care | The Florida Current

Hi,
Right now, President Obama is making final decisions about how much funding he’ll request for programs that serve children with special needs. These vital programs are chronically underfunded – so the President’s decision could dramatically affect the futures of millions of children with disabilities.
Please join me in asking President Obama to increase funding for programs that help kids with special needs succeed. Just click here to send him your message: https://secure2.convio.net/es/site/Advocacy?cmd=display&page=UserAction&id=540
Every year, more than 1 million children go undiagnosed and untreated for their disabilities – but we can help ensure they get the treatment they need by letting President Obama know how much we care. As someone who cares about people with disabilities, I hope you’ll send a letter too.
Thanks!

Tell President Obama: Increase federal funding for children with special needs!

The romantic life of a couple with a disabled child

The romantic life of a couple with a disabled child.

(I, John Buck, being of  relatively sound mind (yeah, who am I kidding) take credit for this contribution.
THE NAUGHTY NURSE:  Yeah after a kid with a disability, the whole nurse/doctor role-playing thing will never be the same.  Instead she is the b*tch  who critiques you on how you handle being a parent and not making the mark.  Unlike a spouse who will never criticize you for not making the mark :)…  esp. when s/he is overtired, stressed and covered in XX (fill in the blank but it always originates with Riley).
LOTS OF MOANING:With a disabled child in the bed 7 feet away you will constantly hear moaning during “the moment”… move to another room and the baby monitor will provide the background “music.” The best part is when the diaper gets really full, you are “in the moment”/almost at the end and there is a huge giggle/laughter in the background.  Nothing says romance like laughter in the background.
A THREESOME :frequent breaks “in-between” to put a pacifier back in the mouth;change a diaper or lift a drooping head. Trust me, a threesome is TOTALLY OVERRATED.
BEING CATHOLIC:  yeah with a disabled kid you don’t get thatmuch and probably every 2 months you get your virginity card back.  One more card and I can apply for canonization.
THE CRYING SCREAM:  Back molars are coming in and no matter whatyou do, cries of pain come out.  Thecries are nothing like the people in “the movies.”  Even “the Hedge Hog” would have backed away from that one.  But, when you are the parents of a disabled child, you plow though!  Take your chances/”Embrace” themoment (and for those of you who do know get the joke/ Do not Google”hedge hog movies adult.”
A THOUSAND AND TWO USES FOR A BURP CLOTH:  Yeah, we are trying to keep this blog PG-13.  You fill in the blank.  (Legal claimer:  Any profit made for using the burp cloth in this way will be forward to >>>> 🙂
COULD HAVE BEEN TWINS:  My FAVORITE  story… Ronan was conceived while my mother-in-law watched Riley for 30 minutes. Considering it took 10 minutes to get to the room.  Ten minutes to get back.  Five minutes to remember what the hell we were doing.  We had 5 minutes to enjoy.  His joke:  Had we had 10 minutes it could have been twins!

 

I SHAVED FOR THIS?:  When you have a disabled kid you will be happy that they just showered (in the past 3 days).
YOU’RE DONE ALREADY?:  As a supportive/contributing husband, I took 7 minutes and wrote the above.  When I told Stacie I was finished.  She replied “you are done already?”  Again,it is amazing what you can/will/DO accomplish with a disabled child!  Even without a disabled child, in the context of this blog, it still fits!
by John Buck
aka The Shark Tooth Guy
Link

My Life’s Reality – Guest Post by Christine

I do not know what’s come over me! Literally it hit me yesterday smack in the face as I was discussing getting Johnathan enrolled in school.

My life became a life of sacrificing my own needs/wants for those of others.
I dreamed of teaching (helping kids); being able to give to those who would someday appreciate it. What have I settled for in a job? –  A bunch of “me, me, me” ungrateful women. There is no “reward” in the job I have; I have so much more to offer this world and will never be able to show it.
I dreamed one day I would watch my children grow and share with them all that I was unable to have growing up and the milestones of life. I have the means, but God has chosen for my girl to struggle through this life while I sit and watch my unappreciative sister’s lack of desire to nurture her child and open the world of opportunity to her.  It kills me to think of all Kaet could have achieved in her life if only she was born “whole”. Why was she cheated?
I would love some mother-daughter time, going shopping, to the salon or even a movie together; all impossible as Kaet gets tired and/or overstimulated easily.
Almost 15 and should be getting excited to learn to drive and for the independence of getting a driver’s license. Kaet will always be dependent on others to get her where she needs to go, yet never be able to tell anyone 🙁
Why was she cheated all life has to offer? – Yes, I know “it is God’s plan and we are not to question, just accept”.  I try to always keep this in mind and pray to him for understanding.
In the end she is my rock. When I am down I run to her and hold her in my arms and thank God I have her in my life. If she gives me this peace, then why do I hurt so?
Being the mom of a special child sure does have its own reward, but it also wears you down when you feel so trapped and secluded from the rest of the world because of the limitations placed on them.
Yes, I know that some say our special needs children are only trapped by their limitations if we let them be; easier said than done. All the work that it takes just to get to and from the necessary doctor/therapy appointments with these children is exhausting; then add in the full time job on top of it; I just don’t have that much left in me.
We are not alone in this journey… It is okay to feel.  Christine

Note from Stacie:
Christine’s words hit me hard… every word rings true for me and reading her words brought the tears back to me.  Unfortunately, no one really wants to know including our families and we must keep it to ourselves as best we can.  It is also quite difficult to function while we carry all this grief.  She reminds me why I attempt this little niche blog… there really are other parents out there feeling just like we do and doing everything to offer their child the happiest life possible.  We can support each other through the miracle of the internet.

Accepting a bit of Insanity”  on KatsCafe.org also explores the depression special needs parents face.

http://30daysofautism.wordpress.com/2011/05/13/let-the-tears-come-dealing-with-grief-and-letting-go/ shares the difficult decisions made by a mom of a child with autism.

Here is another post regarding disability and grief… http://www.differentdream.com/2011/06/how-to-cope-handling-constant-subtle-grief/ 

Stumbo Family Story

April Fool’s in a Doctor’s Office

It is a beautiful Saturday morning.  John is at The Market on Goodlette Frank selling fossils as The Shark Tooth Guy.  We are hoping for a busy turn-out as the other farmer’s markets close down for the season.

Took  Ronan in for a dermatology doctor visit.   Since I must bring Riley along there was the great production of making sure he was well  fed and comfortable, pack up with anything he may need such as clothes change or diapers, then load up Riley’s many supplies.  Then I use the heavy ramp, disassemble the wheelchair and fit it in the back of the jeep.  Carefully place Riley in his seat.  Ronan, must just bring himself, load and buckle himself.  Reverse everything on the other side when we arrive in the parking lot for the medical building.
As I do all this and others arrive long after, file by and sign in to be seen before us.  This is no one else’s fault, but it gets to me anyway.  My time is just as valuable.
It does remind me however, that there are countless instances when I do have legitimate reason to be annoyed by the other clientele coming and going.  One memory stands out above the others.    A visit to Dr. D. Perlmutter’s office in a beautiful medical building in Naples.  After going through the production and finally arriving inside the quiet open foyer.  Keep in mind, at the time Ronan was just a baby and I held him in one arm while pushing the wheelchair with another.  We must have been difficult not to notice yet everyone did.  I located the single elevator and positioned us a few feet in front of the door in the event people would be exiting.  We were not so easy to maneuver so I usually try not to be in the way.  We waited longer than expected and found that many people entered the building just after us and wanted the elevator as well.  We were in the middle of a large crowd when we had started alone.  The doors finally opened.  I do not even remember if anyone stepped off.  I do remember very well that the entire crowd surged around me, piled in to the elevator, turned to face me – each with a stone-faced expression – with no room left and allowed the doors to close before I could even move.   Would you believe, it happened again.  The anger  I felt sent heat to my face and I felt my pulse rising.  The next load I shoved us, Riley – chair – baby and all through the crowd onto the elevator .  The individuals there at that moment were certain to dismiss me as a crazy woman.
Yes, this really happened just as I related the story!  This scenario has repeated many times to various degrees.  Please help me to understand why this happens if anyone has insight?  I welcome your comments.

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