My wife, Paige, and I have 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.
There have been struggles between us when we’ve each felt one path would be better than another for him.
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.
J.P. is 16 years old now. He’s in tenth 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 has done well on the alternate assessment test previously.
Believe me. The boy has likes and dislikes. He loves shows like “Doc McStuffins” and “Paw Patrol,” and doesn’t like sudden noises, latex gloves and masks worn by doctors.
We’ve also been blessed to have a new member of the family, Karina II, thanks to Canine Companions for Independence.
Paige and I spent several 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.
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