I’ve considered blogging for a long time. I’ve thought about the early years as my wife, Paige, and I tried to navigate our way through life with a special-needs child.
We’ve learned a lot as we’ve worked to find the smoothest path to provide our son, J.P., with a high quality of life after being told he wouldn’t be with us for long. We studied his hard-to-pronounce and hard-to-spell diagnosis of holoprosencephaly and the many diagnoses that come with such a brain malformation, including epilepsy, diabetes insipidus and spasticity to name a few.
J.P. is totally reliant on us for all of his daily needs. He uses a wheelchair, has a g-tube for feeding and a vagal nerve stimulator to control his seizures. He doesn’t speak in words, but makes sounds and is fully aware of everything going on around him.
There have been struggles between us when we’ve each felt one path would be better than another for him. Do you send a child like J.P. to school or keep him home? Can you go on vacation with him?
What if something happens while you’re away?
Questions. There are many questions and no real concrete answers. One doctor will say one thing, and another may say something completely different.
Making decisions can be difficult and mind-boggling.
There have been times of great worry and sadness, as well as tears of joy and happiness –sometimes at what may seem like very small victories.
I’ve learned that’s what having a special-needs child brings. You take two steps forward and three steps back.
While parents of typical children rejoice when their sons or daughters score their first touchdown or play their first recital, those with kids with special needs find happiness with simply seeing them take their first step in physical therapy or get to be taken off one of a dozen medications.
It’s a different, simpler world.
J.P. is 11 years old now. He’s in fourth grade and receives hospital-homebound instruction through our local school district. He communicates using assistive technology, and while he doesn’t take the FCAT, he did very well on the alternate assessment test for the past two years.
Believe me. The boy has likes and dislikes. He loves shows like “Sesame Street” and “Super Why,” and doesn’t like sudden noises, latex gloves and masks worn by doctors.
So why start a blog now?
Some exciting times are in store for our family. We’re adding a new member thanks to Canine Companions for Independence.
Paige and I have spent the last nine months completing loads of paperwork, getting forms filled out by doctors and therapists, sharing J.P.’s story, attending interviews and completing orientation at the Southeast headquarters of CCI in Orlando.
We learned in March that we would be attending team training in May. It’s two full weeks of classes and lectures, training with the dogs, quizzes, exams and even field trips.
We’ll be living in a dormitory and graduation will happen at SeaWorld.
WESH-TV, which is where I work, will be covering the training and graduation, and I hope to offer
additional insight with the blog and continue it afterward to help the many parents of special-needs kids easily navigate what can be very trying times.
I guess that’s why I said earlier that there are uncomfortable times for any parent of a child with special needs, but there are also times of great happiness. I believe we’re about to embark on one of them, and I’m happy to share our story with all of you.
Paige and I hope the dog will be a true companion to brighten J.P.’s world, a real furry friend, and we hope he’ll be able to help us get around a bit easier and assist with picking things up that J.P. drops and open doors to help us get him in and out of the house.
Of course, I think we’ll learn much more about what the dog is capable of in the coming weeks.
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