Red tape sucks. Bureaucracy sucks. Add special needs, parents, and other acronyms like IEP and AB3632 to the mix, and it’s frankly mind boggling. Perturbing. Chap burning.
Joseph’s therapist came to see Poe and I. At our house. Sans Joseph. May I repeat – HOUSE CALL. Which is exactly what she should have done. There was some miscommunication in terms of Joseph’s care – instructions that left Poe and I’s cartoon characters with little “WTF?!” over our heads. She needed to clean up the mess. I understand everything much better now. Let me correct that statement. I knew EXACTLY what was going on, and I just had it confirmed.
M.O.N.E.Y. Speaks volumes when comparing, “Of course we’ll get you in for a consult” and, “We no longer meet the standard of care for this patient.”
Standard of care my ass.
BUT. Once I usher along the people who need to take care of proper paperwork, we’ll be all set, I think. This is a good thing. Advocating works again.
This therapist doesn’t usually deal with me. She usually deals with Poe on a weekly basis. She got to be exposed to mama bear. The mama bear who knows her paperwork. It was a good thing. Most of the families she works with don’t have mama bears on the cubs’ side – so she was a little taken aback by me. On the one hand, I’m glad she was honest with me, and transparent. On the other hand, what a sad, sad statement on society that me, fighting for rights, privileges, and solid medical help for her son’s mental health is an ANOMALY. My advocating for my son is ABNORMAL.
I can see an uneducated or ignorant mother having issues communicating concerns. But “Help my son or I’ll keep coming at you until you do” is pretty much the same in any vernacular. So, me saying, “According to Joseph’s AB3632 this, this, and this service is required of you by the state of California. It has been properly documented by the Department of Mental Health. It has been cataloged in his IEP. When can we schedule it? Oh, really? Here call this, this, and this person, and then call me back. And if you don’t, I WILL call YOU.” Is the EXACT SAME THING AS “My son needs help, please help him.” SO. The fact that most of the mothers in this particular county do not say that? Floors me. So it’s not a lack of education. It’s a lack of caring. That scares me. I haven’t even gone into all of Joseph’s issues. But you know a lot of them. And a child going through that without a parent fighting for him? That crushes me. Poe told me today that when he goes in for therapy for Joseph, he’s the only parent there. In other words, getting out of the car, into the building, finding the receptionist, checking in, and then waiting for doctor to come get him. Children. Mental health care. ALONE.
I think I’m being judgmental. But I can’t help it. God knows I’m not the most maternal of mothers out there. I’m likely to kick you in the ass if you’re in trouble – not hug you. I’ll probably tell you to shut up so I can take your temperature properly. And you’ll drink those darn fluids when you’re sick if I have to plug your nose to get you to do it. Poe is the same way. But by God those kids know they’re loved (whether they like it or not), have proper clothes, supervision, shelter, education, and medical care. That includes staying with them unless they are properly in the care of another adult. NOT the receptionist. That includes making sure they get the care (and ongoing aftercare) they deserve to grow into functional, vibrant adults. That includes talking to their therapist and making sure they’re on track, and if not the next course of action. That includes taking steps to ensure that something happens if it’s not.
Ugh. Appears I hit a bit of a rant today. But when I find out that by being a proactive parent with my kids’ MEDICAL PROFESSIONAL I’m an oddity? That makes me angry on all those other kids’ behalf.
You would be SO surprised how many parents just nod their heads when doctors talk to them.
Even about their own care, let alone their kids.
Being a proactive, involved parent doesn’t mean coddling your kids or giving them everything they want. In fact, it’s quite the opposite. It’s about teaching them responsibility for themselves.
And part of that is modeling it. With their health care professionals.
And if you don’t go to bat for your kids, WHO WILL?
Wow. So much to respond to.. Just.. WOW.
Wanted to add.. I totally get your style of parenting.. we work much the same way in this house. I think some might assume that when you have a special needs child, you need to baby them. I don’t think so. You might have to tweak some things now and then, because no matter if your child has issues or not, they don’t all respond to the same methods of discipline in the same way. But we’re not dealing with dumb children here. They’re smart as hell- they just have certain needs that other children don’t. So there’s no reason to let them get way with murder now, and then watch as they end up in jail or worse. We really are doing them a favor.
As for the parents who leave their kids at the dr’s or therapist’s office.. I just don’t get it. I really don’t.
You go Mom!
The state of our state perplexes me sometimes-the public and private sectors. Scary. Joseph is lucky to have you and Poe for parents!
You know, my sister had to do the same thing with her son when he got sick. She became a pediatric nurse, social worker, and insurance expert all rolled up into one. Oh, and comforting mommy to boot. My nephew’s medical issues were physical and profound, but you’d be surprised how many parents of kids on his unit ran the opposite direction when their kids got sick. Many stayed, but many also stayed away.
Your son is blessed to have 2 parent advocates. And when I hear you say that you used paper-work-speak to make them live up to the standard of care your son deserves, I love it.
This mom is applauding at her keyboard. Good job!
– Julia at Midwest Moms