The System is Failing Us
By CourtneyBarnum on June 30, 2014
This post may ruffle some feathers, may even wad some uptight people's panties. So if you are easily ruffled or wadded, then walk away from this post.
This system is flawed. It's failing our children. Our children are sometimes in need of emergent care. It's NOT there for them. It's not fair. To them, or to the parents that care for them.
You see, last month, Liam hit rock bottom. I posted briefly about it, even blogged about in a round about way. (You can read that HERE.)
He had a regression of sorts. That's really the best word I can think to describe it. It started out of the blue. He came to us bawling. Told us his mind was telling him he might be gay, but he likes girls, so that can't be true. He was perseverating on this ideal, and he couldn't stop. He was crying, screaming, rocking, you get the idea.
His father and I tried to explain that it doesn't matter to us, or anyone in our family if he is heterosexual, or homosexual. He is still our boy. That didn't matter to him. Apparently some kid that was playing with Liam and a bunch of kids told Liam, "midgets are gay. and you're a midget, so you're gay."
Sounds stupid, I know, but to Liam, it wasn't. This then progressed. (Bear with me, this is hard to relive, and to actually type it is even worse.)
The next morning at 5 am, he awoke. He was sobbing and rocking uncontrollably. He told me that "because I am autistic, people think I am a killer. They said I will grow up to be a serial killer momma. I don't want to be that when I grow up. I'm not bad!" He really said all this! This was stemming from the news stories on Adam Lanza months back. He heard it, and his mind tucked it away for a rainy day.
(**Note: When you are watching the news, you may think your kiddos aren't paying attention, but I assure you, THEY ARE. Take my advice, shelter them from the heartless media.)
So for DAYS, his mind was taking that story and twisting it about in his mind. He wasn't eating. Barely drinking. He was inconsolable. It didn't matter what we said, or what his therapists said. His mind was set that the world thinks he's a killer.
Now, I have to stop for a moment and thank his therapists and his former doctor from Youth Advocate Programs. They ALL went above and beyond their duties to not only help Liam, but his father and I. Really, they were there, all day, and into the evening checking in on us. I couldn't be more thankful to them all.
(Picture above was written by Liam, it reads "My Brane will not lev me olone." (my brain will not leave me alone.))
But, here is where the system falls apart. Your child is in crisis mode. What do you do? Well, it got bad enough, that we had to take him to the hospital. Sadly, they point blank told us, "We don't know what to do. We don't usually have to deal with this stuff." Say what? You see, they aren't trained to care for autistic people. They aren't trained in protocols to deal with these types of emergencies.
Again, thank god for YAP. Liam's MT met us at the hospital. She gave them the back story. She told them the protocol. So, another social worker was called in to give Liam an emergency evaluation. We actually knew her because Liam used to get services from that agency. Now pay attention, here is proof that the system is flawed.
Here were our options: Since he wasn't considered a danger to himself or us, he could go home. We could then call on Monday (this was a Friday afternoon) and get on a WAIT list for their child psychologist. But we were assured the wait was long~ MONTHS. OR, we could call another provider and get on their list. Our other option was to take him to the hospital in the next town over. That hospital has a psych center, but not for Peds. So, if they found him in need, they ship us via ambulance to a pediatric psych hospital that is TWO hours away from us.
Let that sink in a moment.... We have a psych center here, but NOTHING for children. So, do they think our kids aren't in need????
We made it through the weekend. He was eating calms tabs and valerian root like it was candy, to no avail. He couldn't stay off the toilet because his stomach was upset from his nerves, from not eating. Our hearts were being ripped from our chests. First thing Monday morning, I called the other service provider. YES, you read that right, I CALLED!
We were told it goes like this. You see the therapist that works for the Doctor, THREE times, THEN you can get on that Dr's wait list. WHAT???? What part of EMERGENCY ARE THEY MISSING HERE??? Now, I know my child isn't the only autistic kid in this area. I also know he isn't the only kid to need emergent care from time to time. So I didn't expect them to push other kids out to get mine in, but COME ON! This is the best they can do?
So we took it. Liam's BSC accompanied us to this appointment. We met with the woman. She was very nice. Liam was doing quite a bit better, but still in need of help soon. She told us that with all that was going on, she could push him up and waive the three appointments with her. We took it. We left feeling hopeful.
We got a call two days later (after we called them 5 times to find out the date of appt), her supervisor had approved the waiver and he was to see the psychiatrist on July 11th. A wait yes, but we had hope.
Now, the system is going to fail us again. We got a call from them last Wednesday. They had a cancellation for Thursday morning. I was ecstatic. We took it. I was on cloud 9! When I went to bed that night, I was jovial and excited. I felt that even though we were having problems, the system was actually working FOR us.
It wasn't. Neither was fate. Liam woke us up at 3 am that morning. Covered in vomit and tears. We were up with him ALL night. He was very sick. At 630 am his father said there was no way we could take him in there like that. He called the emergency cancellation number, told them Liam was sick and we wouldn't be in.
I was upset, but I knew July 11th wasn't too far away. Liam became more ill, so I was focused on that and not his upcoming appointment. On Saturday we got the mail, and there was a letter from the provider. They marked him an a no show, and he now has NO APPOINTMENT.
Excuse me, what???? It was a LONG weekend waiting until this morning to call.
This time, Pat called, he knew I was too angry to call, so he did. No wait for it, the system is screwing us again. This time, without vaseline so it's gonna hurt!
"Because you didn't give us a 24 hour notice, you were a no show. When we bumped you up, we gave him appointment on July 11th to someone else. The next appointment we have is August 11th."
Wait, WHAT????? So, because my child didn't get sick TWENTY FOUR HOURS BEFORE HIS APPOINTMENT, they marked him a no show. And, now he has to wait even longer for an appointment?
Where is the emergency in that????? Yes, he is doing better, but he NEEDS to be seen. He is still having moments where he can't get away from his mind. He is still taking Calms Tabs a few times a day. He is now having nightmares. He is now aggressive and nasty, or he will cry and have meltdowns for no apparent reason.
That doesn't matter to the system. This is how it works. It's like this EVERYWHERE! You hear stories of parents of severely autistic kids, and their cries for help going unanswered. I get it. WHILE I DON'T IN ANY WAY CONDONE THEM HARMING OR EVEN TAKING THEIR CHILD'S LIFE, I see what they mean when they say the system has failed them. Sadly, they are right.
The system is flawed. It's not prepared for our children. It's not developed for them. Something needs to change. Something needs to give.
SOMEONE NEEDS TO STEP UP AND HELP OUR CHILDREN.