Outreach Smackdown

I am outraged.

Livid.

Seething.


And no, this is not even about Voldemort's dumber-than-a-post veep choice.

I had a long conversation yesterday with a good friend who lives in a shoe - she has so many children, I hardly ever see her.
Okay, I may have made up the part about living in a shoe.

Her daughter is two and 1/2 years old, was a 33 week preemie, but born 'acting more like a thirty week old', which essentially means that she was born with a delay. Other than a (common-in-preemies) minor heart defect, her delays were not of concern or anything apparently severe. She has been monitored by the university infant development program, and has met most of her milestones, but has always had a bit of delay in most of her development. But now that she is over two, those delays show up with more distinction.
We talked for a while about her latest triptych to the doctor circuit; her pediatrician recommended an eye doctor, who examined the tot and found that, other than the obvious strabismus, her eyesight was rather perfect, but he suspected a neurological disorder and referred her to a neurologist, and the neurologist confirmed a suspected processing disorder and also suggested that she may possibly have...cerebral palsy.
Oh, wow. Just casually tossed that one into my friend's unsuspecting lap.
So naturally, my next question was, "So, how many hours of early intervention are you getting?"
"Oh...well...we go to the infant development clinic."
"No, not that. The early intervention people. Who send therapists to your house."
"Oh no. We don't have that."
"Isn't your doctor the chief ped at that practice (which also happens to be the practice that treats my daughter)?"
"Yes."
"But he never mentioned early intervention to you? In the entire time you have been bringing your preemie child to him?"
"Ummm...no. I think that the infant development people may have mentioned it once...but I confess...I thought 'ohgod, not another appointment I have to fit in!' and probably 'forgot' about it."
"Yeah, with your five kids, I am sure that was a deliberate oversight", I joked.
"But really. Your pediatrician? Never even mentioned? Early? Intervention? Seriously?"
"No, never."
I said I would need to call her back.


Then I walked up the road and threw myself into traffic. But I live in the mountains, and I was lying there for about twenty minutes when it occurred to me that not one car had passed. I got bored and returned to my house to call my friend back.

"Okay, let me explain to you what early intervention is like and why you want it. You are romping through a beautiful meadow, filled with wildflowers, someone is holding your hands at either side. That is the early intervention part.
You come running up to a cliff, whereupon the hand-holders abruptly stop and you jump off alone, landing at the hands (or feet) of the school district. That is when your child turns three. Yes, three."

"Oh. Whoa. As in, in six months."

"Yes. As in 'six months'."

"Do you have their number?" She wisely asked, and we wasted no more time chatting so that she could call the regional center post-haste.

One of the things our early intervention provider has been doing locally is outreach with pediatricians, after noting that many of the families receiving their services reported that their pediatrician suggested that they 'wait and see' when they shared developmental concerns about their young children. This is such a standard response; even I got it when I asked about Bubbles' speech at 20 months! The early part of early intervention is apparently lost in translation, and our doctors, those professionals who care for our children when they are sick, are seemingly unable to suggest intervention. Not only not suggest it, but also dismiss parental concerns, thereby often missing the window in which the most intensive assistance can be offered to a child.


Seems that someone needs an outreach smackdown, right quick.
Think that anyone would hire me if I branded myself as an 'Outreach Smackdown Specialist'?

While I am at it, another friend in a neighboring county was recently visiting and I asked her what kind of services she was receiving from her regional center for her autistic son. They moved from Texas less than a year ago, and her son, at the age of five, finally received an Autism diagnosis. I say finally, because she said she suspected from 18 months old that he was autistic. She said she was not getting any services from her regional center. I asked her why, and she said that he was over three, and therefore not eligible for early intervention services.
"But that doesn't matter!" I sputtered, "He has autism! He is eligible for help from them! Respite care, therapy!"
She had no idea either.
Both of the families to whom I refer are educated, well-informed parents. We all happen to be English-speaking. Can you imagine trying to wade through all of this information if you did not speak much English or were not privileged enough to have had an education?

So, for all the informed, misinformed, underinformed and slipping-through-the-cracks families out there, please read on to the five qualifiers that enable an individual to receive regional center services for the rest of their life. (This data is for California - I will start doing my research on other states, but if you know more about services in your own state, please let me know!):

1. Autism
2. Cerebral palsy
3. Debilitating seizure disorder
4. Mental retardation
5. A syndrome which must be treated with mental retardation as a component.

Everybody should know these facts; these rights to those we love and those in need.