I'm not saying this to be an Eeyore. It is an attempt to let people know that there is no quick fix.
In a culture surrounded by instant gratification- fast food, instant streaming entertainment, click a button to donate to a charity... We have grown accustomed to seeing results in a very short period of time.
So anytime someone has a chronic illness, something that never goes away, people are less likely to help because they can't see quick results because of their efforts.
When Chelsea was little, I did a summer of fundraising to get her speech therapy. We worked 5 jobs between myself and my husband, did a GoFundMe, we asked family members to help, and church members donated a ton of things for a huge yard sale. It was unbelievably helpful and I cried many tears of gratitude.
But time and again as I was trying to do anything to get my kid help, the same question would be asked. "How long will it take?"
It would be asked different ways, like "How much money will the speech therapy take?" or "When do kids with this diagnosis start talking?"
Everyone wanted the timeline for when Chelsea would be "fixed."
I tried to explain to a school district professional (head of the special ed program, actually, which makes this story all the sadder) how serious and long-term this diagnosis was.
I tried to explain that there was no band-aid fix. That 200 or even 2000 hours of speech therapy wouldn't "fix" my kid.
And I will never forget her response. She said, "If she needs that much help to just get a couple words, you need to just put her into a group home and focus on the rest of your family."
My heart broke open.
Was my child worth less than another child if she don't have the same capabilities?
Are people only willing to help until a certain dollar amount is reached, and anything over that is too much to invest into a person?
Why is it that people are willing to fix a broken arm, or hire a tutor short term, but a long-term fix is too much work?
How is it that schools and insurance are willing to help when there is a major crisis (a child is about to fail a grade badly, or someone is about to commit suicide), but anything to catch that person up is too much work and not covered by an IEP or insurance?
Do people see mental health, speech, and cognitive functioning as a luxury? As in, if you have it, great, but don't expect anyone to help if you are struggling before you fail.
Right now, I have an uncle in rehab, trying to recover from additions and mental illness.
People will hear alcoholic or mental illness, and suddenly, that becomes the label.
They don't consider that this is a dad who is an awesome chef, tells hilarious stories, and likes to go fishing with his kids.
They don't look at how he tried to get therapy and it wasn't covered by insurance, so it wasn't affordable, and he tried to find another way to numb the severe depression he faced daily.
People don't see the years of trying to find a way to get help for a mental illness, they just see a guy pop up on their newsfeed who has those labels of "alcoholic" and "borderline personality disorder".
So they scroll past, thinking what a shame, but somehow concocting in their mind an image of a person who doesn't need help, or think that it isn't their problem, so they move on.
They don't think that this person could be someone like your husband or brother or best friend who is desperately trying to get help, but it is such a taboo topic, so help isn't offered.
When people see a child with a disability, it is like they assume that the family must have medical expenses covered by insurance, or be on a government program that eases the financial burden, or have family helping.
Guess what? The majority of the time, that isn't the case.
The majority of the time, that family is being financially crippled as they fight tooth and nail, every day, to make sure their child is okay, and has access to the OUTRAGEOUSLY expense therapy and treatment that is needed.
But that isn't a nice happy topic, so people don't like those stories.
You want to see the picture of the cute down syndrome kid smiling and reading a book, or planting a seed, or playing at the park. You want to think that everything is okay. Even when you hear that there are hard times, you picture a brief tantrum that is quickly resolved.
People either turn a blind eye to the struggles, or else are horrified and cry poor parenting when the family has to physically restrain their special needs child from harming anyone (including themselves) or anything as they melt down.
They assume that all kids learn to walk and talk because severely disabled children are often still sent to special schools away from "normal" kids.
It is impossible to explain the depth and breadth of caring for someone with a long-term disability, whether that is a child with an intellectual impairment, or a spouse with debilitating depression and anxiety.
It can't be adequately explained, only experienced long term. When someone babysits a special needs child, that isn't experiencing what it is to wake up every day for that child's entire life and feed them, dress them, and prevent them hurting themselves. And caregivers need a lot of love and support.
People say they wish their babies would never grow up, but I can't think of a single special needs family that would say that. We desperately wish that we could see them grow up, become self-sufficient, and fly away from the nest.
Parents love their kids. When they break their arm, you fix it. When they make poor life choices, you cry and still love them and want them to improve. When you have a child with a disability, you grieve but still love them and care for them and want them to improve every day, even if they can't ever be truly "fixed".
Disabilities aren't fixed quickly. We are in this for the long haul!
No comments:
Post a Comment