WARNING: THIS BLOG CARRIES SOME OBSCENE LANGUAGE!!!
This was on my Facebook wall a few days ago, posted by Cyndi Wise Massey, who also has a child with Down Syndrome.
REASONS YOU SHOULD THINK TWICE BEFORE MESSING WITH SPECIAL NEEDS MOM: (I just had to share it)
1. Some of us have given up on social skills and don't care what we say or do.
2. We're not afraid to have a serious "meltdown" of our own.
3. We are tired and all the patience we have is for our kids.
4. We have a far shorter fuse for nonsense as a result of our responsibilities but A FAR thicker skin.
5. We can get you in a hold/lockdown position in less than 3.5 secs.
6.We can shoot you a look that would make a linebacker tremble in his boots.
7.Chances are it's been awhile since we've had a full night of sleep and that will give us a reason to plead insanity.
8. Our tolerance and patience is for our kids who didn't choose to have special needs, not for someone who CHOOSES to behave inappropriately and is ABLE to control their actions.
9. We're probably already on edge and it would be stupid to push us over.
10. We are sleep deprived and already defensive, and we spend all of our patience on our children, doctors, therapists, social workers and teachers, why would we waste an ounce of it on a total stranger?
11. We've had to fight from the moment of our child's birth so by the time you piss us off we're seasoned battlers and could win a war.
12.We devote our lives to our children and don't need more stress and people who don't understand our life.
13. Wherever there is a cub, there is a mama bear...We're always watching.
While I got a real chuckle out of this, I admit, it does ring true, and I see myself in it, like so many other moms (and dads) of special needs kids.
I've fought with doctors, nurses, teachers, administrators, insurance companies, and weird and rude people of all varieties.
Here are just a few highlights of Mishayla's mom, the mama bear, in action:
THE NURSE THAT INSISTED GUN SHOT VICTIMS WERE MORE IMPORTANT THAN MISHAYLA
1. Mishayla's g-tube fell out and the gastrostomy hole itself was exposed. We were told by her gastroenterologist that the opening could not be left empty for more than a few hours, or the whole could close by itself. If this were to happen, Mishayla would have to go through another surgery to reopen it, because at that time, she was not eating fully by mouth yet.
So one night when the tube came out, and we couldn't get it back in, we were forced to take Mishayla to the emergency at a local Southern California hospital near our home. It was a Saturday night, and the ER was filled with car wrecks and gun shot victims, all of these people, we were told, had priority over our infant daughter.
They put us in a room, and we sat and sat. No doctor, no nurse, there we sat for an hour. All this time I'm feeling more frantic. I could feel the panic rising in me. If the hole closes, she will go through another surgery. Just as I was nearly having a panic attack, a nurse walked in.
Talk about being at the wrong place at the wrong time.
"Where is the doctor?" I said. "This gastrostomy could close up. We need someone in here now."
She looked at me apologetically. "Well, as you can see, we are very busy tonight. We have a gun shot victim next door the doctors are working on.....
She never got to finish. "Frankly, I don't give a flying fuck who got shot" I said, "Get a goddamn doctor in here right now."
She sheepishly backed away. "I'll see what I can do."
Nothing happened again for about another 15 minutes. That was it. If I had to make this happen, I would do it.
I ran out of the room, leaving my daughter with my husband. I ran upstairs to the NICU, where I knew the neonatologist, who knew Mishayla, was working.
I found Dr. Kumar. Frantically, I explained the situation.
He grabbed a new tube, and followed me down to the ER. There he inserted the tube, and we were done in a few minutes, no thanks to any of the worthless ER staff who didn't think my daughter was important.
Sometimes, ya just gotta make things happen for your child on your own.
2. THE INSURANCE COMPANY REP WHO TRIED TO TELL ME THE SPECIAL FORMULA FOR MISHAYLA WAS NOT COVERED BECAUSE IT WAS NOT NECESSARY.
Mishayla's first baby formula was something called Pregestimil. This was a special, pre-digested formula to help aid in Mishayla processing her food easier because of the esophageal and bowel surgeries.
As I mentioned in a previous blog, the formula was very expensive. Over 50 bucks a can to be exact. So since you had to have a prescription to obtain it, I figured the insurance company would pay for at least some of it.
WRONG!!
So I got on the phone to Blue Cross to have a chat with them. I was told that they could not pay for the formula because, well, for one thing, it was not medicinal, it was food.
"Yes," I said, "but it's the only food she can eat at the moment. Not to mention it's a prescription. Now, as far as I know, prescriptions are medicine."
She was very curt with me. "Does the insurance company pay for your vitamins?"
I'm thinking: what the hell does that have to do with this conversation, but okay, I"ll play along.
"No, I said," but me taking vitamins is not absolutely necessary for my survival. This formula for my daughter is."
She continued with her bombastic attitude. "Why don't you just ask the doctor to put her on something else that you can afford."
I felt myself getting hot, my stomach starting to twist. I was done. "I don't think we have anything more to say to each other," I said. "Give me a supervisor."
In a moment, a supervisor came on the line. This was what I told her.
"I suggest the next time your staff dispenses medical advise, and tries to tell me my daughter doesn't need what her doctors tell me she needs, that she have an M.D. credential to back up their mouth, otherwise, she needs to shut the hell up about what she doesn't know anything about."
Then I explained, again, that this was the only formula Mishayla could eat. That it was not a supplement, as this lackey had suggested, that it was a prescription medication because her stomach was surgically altered.
"I'll see what I can do," said the supervisor.
Needless to say, I got the formula paid for. It wasn't the first fight for Mishayla, or the last.
3. THE NURSE THAT INSISTED TONY AND I WERE TOO STUPID TO UNDERSTAND OUR DAUGHTER'S MEDICAL CHART.
As we were waiting for Mishayla to go in for heart surgery, her chart was sitting on the table. Bored, and I admit, curious, I started to poke through it.
A nurse came in and grabbed in away from me. "We don't allow parents to look at those," she said.
I was offended, but I tried to blow it off. "I was just curious," I said, kind of trying to make a joke of it."
"Well," she said. "We discourage parents from looking at their children's charts. There is so much there that parents just don't have the capacity to understand."
Now I was mad. "Let me explain something to you," I said as patiently as I could. "I know every procedure, every surgery, every anomaly my daughter has intimately. I live with it every minute. So there is nothing in that chart that is going to be a surprise to me, let alone something I'm not going to understand. And frankly, the insinuation that I would not understand it is downright insulting."
She wasn't expecting that.
Luckily, for her and for me, Mishayla's wonderful cardiologist Burton Fink entered at that moment. "Anything wrong?" he asked.
"I was just telling Mrs. Moore that we don't encourage parents looking at the charts....
He stopped her. "Oh," he said. "They're fine. They do know everything about their child. They're great parents!!!
It's great to have someone on your side once in a while. But I can hold my own when I don't.
I'm sure all of us special needs parents have stories like these. It goes with the territory. We have a great love, and a great passion for our kids, and to get them what they deserve and need.
Would love to hear any of your "war" stories. Share them with me here!!!
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