With one major exception, hospital visits have always been positive experiences for Ashley.
When I first brought her home, the hospital we visited most often was our local Children’s Hospital. Everything about that hospital was geared towards children and their families. Doctors and nurses were specially trained and their hearts were called to tend to the needs of sick children. The facility was set up to put scared children at ease, and to make families a fully participating part in their child’s healthcare experience.
When that local Children’s Hospital became more of a rehab facility than an acute care facility, we were forced to seek care at one of our regular hospitals – hospitals which treat children and adults, hospitals which cater to pregnant women, people with cancer, people needing surgery and people with mental health issues. And still our experience was good since the hospital had a special department to handle the needs of children, even children with disabilities.
But now, as my children are becoming young adults, I’m finding that the special attention paid to making my children with disabilities comfortable during hospital visits is diminishing.
As young adults, my children with special needs are now just patients – patients just like those without special needs.
Have others of you found this to be true? If so, how have you addressed this with your medical support staff? I don’t think my children with special needs always need special attention, but I do believe they need the appropriate accommodations. And I’m not always finding that…
It seems to be anyone under 18 should still be treated as "children" or "young adults" not patients.
ReplyDeleteI guess that would depend. Exactly what kind of accommodations are you looking for?
ReplyDeleteAnd as Corrie said, I would try to keep them in the youth system as long as possible. The Blue Jay will be 17 next month and the neuro we've had for the past 15 years just retired. He told me that he didn't figure either the Blue Jay or I was ready to transition to the adult system (where the interest would only be in her epilepsy -which fortunately is well-controlled at the moment - and not in her development). So he picked us another neuro at the Children's Hospital. Worked for me!
First of all, up to 21 there should be no problem. After that, it depends on the condition. From volunteering in hospitals in peds I have found adults placed in peds aged 22-26 who had "pediatric" conditions such as cystic fibrosis, because that's where the specialists are. They're not where the adults are, that doesn't exist. Once there was a 22 year old pregnant woman on peds instead of maternity because she has CF. I, for example, get my botox from a "pediatric" specialist at a children's hospital here and am almost 25. I know another patient who is in her late 20s and my dr once told me she has a patient who is in her 80s. However, if your young adult with disabilities is in the hospital for say the swine flu, this may or may not be the case. I guess you could request peds and see what happens. I've been toying with doing that myself if/when I go to the hospital again.
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