If one ever wonders what a parent of a special needs child does with their time. Oh if one ever dares to question WHY we aren't doing something that was forgotten, like cleaning the house...
It could be that we are on the phone 40% of the day. No not chit chatting it up with our friends, mostly because many of us SNP (special needs parents) probably don't have time to make friends, let alone maintain friendships. Hell its hard enough for us to keep our families together. Anyways...40% on the phone calling insurance companies to figure out why something is not being covered when it was covered a month ago (and you've had no changes in your policy), or you are asking (demanding) an explanation as to why your handicapped 3 yo. child is being denied physical therapy. WTF? Then of course no phone call is ever resolved with just one conversation. Then you have to see how something was coded, but GOD FORBID that the insurance company will tell you how it was coded on the paperwork they received (although it is sitting in front of them). So then on the phone yet again calling the provider to find out exactly how it was coded and oh by the way what the hell does that code mean? So after days and hours on the phone....there is an apology of "Oh, your son didn't receive this benefit for a month, or even a few days I am so sorry ..." Hell no. And whats sick it all comes down to a frickin' code that should have been something like 340.1 and oh crap they sent in 340.2. again WTF?!?!?
So what we do most of the time is fight, argue, cry and sit in defeat, waiting and praying that someone will have a heart.
The rest of our time, we are trying to fit in everything that needs to be done with our child so that he can have some quality of life. We can't skip these exercises that need to be done, those leg stretches, the arm stretching, the tummy time. If you leave off the leg stretches/ankle stretches in a day, you face your child getting the shortened hamstrings and other muscles which then can result in surgery that will be needed down the line, where they are in casts from their hips to their toes. Try carrying someone like that! Our schedules of SNP aren't easy. Many of you think, of she doesn't work she just stays at home with her child. God I wish that is what I did......and believe me we are hardly home....and if we are, its because some a$$hole person thinks a child of 3 yrs old that can't walk, sit by himself, roll over, crawl doesn't need frickin therapy. Again I say WTF?
Then (thank god we are past this part for now) your child starts having infantile spasms again... and your form of treatment (which must be done immediate as they spasms can harm the child greatly to where they can regress to infant state and you may never get them back to where they are again) is ACTH. If you remember back a little over a year ago, Daniel had to be given shots daily for 6 weeks of a drug that has possible horrible side effects, but can also cure your child of the spasms. Double edged sword. At the exact time Daniel started this treatment, the price of ACTH went from approximately $2000 a vial to over $25,000 (no there is no typo there!) Generally if you're lucky, you can get away with only needing 4-5 vials...so what is a mere $125,000. Unreal isn't it? and you have to FIGHT to get it. Check out what Trevors mom has to do.
And this is why it is disheartening......what happened to the times when people use to care about each other? When it wasn't ever man for himself? What happened to helping out someone who wasn't quite as well off as you? What happened to the human race?
For the good of mankind?
I wish someone who open their eyes sometime and look at our children....do you think for one minute that they asked to be like this? That we as their parents WANT them to have to suffer? That we want to see the tears in their eyes because they CAN'T do what ever other child is doing? Stop for a minute out of your busy life and watch a child with special needs...climb inside their heads for a little bit....what are they thinking?
"Why can't I do that"
"Why don't people treat me nicely"
"Why are they staring at me and/or laughing?"
"Why are kids mean to me?"
"I want to run, I want to play without someone having to move my hands for me..."
I watched a video of a young teen who is none verbal and has CP, uses an augmentative device to communicate, and it was so very very sad...because the last words were....
"I want to be accepted, and loved, I didn't do anything wrong, this is just how I am, I am not a monster....
How sad and disheartening is that? Life is just disheartening....