Just now I was cleaning up my in-box and I found a post that I had made to the L.A. Down syndrome group a few months ago. I'm pasting it here so people who don't have kids with disabilities might get a taste of some of the mind-numbing conversations we as parents who do have kids with special needs have with mindless drones, who collect a paycheck whether they're actually helpful or not. Most of the time it's not the stress of parenting a child with special needs that makes us want to stab people in the arm with shivs hidden under our sleeves, it's conversations like these: This is from Oct. 27, 2011
So this afternoon we had our annual meeting w/ our regional center (Harbor, which covers the SouthBay). I don't know why I didn't come here first a few days ago and ask for some tips and reminders with which to take to the meeting, but I totally spaced it. Chalk it up to only have six brain cells left.
Some background: Hayden is 13, but developmentally he operates somewhere between 2-4years of age (4 maybe stretching it, but hey, I'm entitled to a mother's optimism while wearing my rose-colored-glasses!!). We currently receive 18 hours of respite/month (which we had to formally petition for last year) for which we are VERY grateful. We are a homeschooling family and do not access therapeutic supports and services through the school system. There are MAJOR safety concerns and issues with Hayden including him leaving the house (remember him escaping from our house when we lived dangerously close to Pac Coast Hwy???) and regularly turning on the hot water in the kitchen and bathroom sinks (his nerve receptors don't seem to alert him when his hands are under the steaming hot stream of water), which means line-of-sight-care. Which means someone MUST be with him at ALL times. Which means if I need to use the bathroom, I do it BEFORE I make his breakfast/lunch so WHEN (not if, when) he gets up in the middle of his meal to turn on the hot water (which he does compulsively), I'm right there to redirect him.
Okay, so from last year's IFSP to this year's, there weren't a whole lot of major changes in Hayden's life that would affect us accessing services (what services???) and supports (nonexistant so far) from HRC, but I really tried to emphasize from the get-go the safety part of our life and Hayden's inability to respond to stimuli, to our directions (often-not always). So we start the meeting by going over the first couple of sections and my husband tries to ask our case mgr what can be done to help US bridge the gap between what a typical 13 year old behaves like/is capable of understanding, etc.....and what we go through with Hayden on a daily basis. And the case worker says, "Can you be more specific?"...."Well", my husband adds, "We don't know exactly what to ask for, but we know we need help".....and the case worker says, "Can you be more specific?". At this point my husband's face (natural red headed complexion-used to have bright red hair back in the day) goes completely beet red. Danger Will! Danger Will!! Get the husband out of the room before we need a HAZMAT crew in here!!" My husband tries to explain himself and then she talks OVER him and tells us how HRC can't provide any services whatsoever (good to know---can we just cut to the chase and ask for more respite hours now??), but that she could send us information on classes they have there at HRC (classes? first I've heard of any of that). She tells us ALL about the "Y" and their various community programs but then when I suggest that we probably can't afford the membership she says, "Oh well, we can't pay for that". At this point I should say I'm totally cool with that....I'm not expecting HRC to pay for the Y, or therapeutic horseback riding, music therapy, or camps, or traditional therapies, or anything really.......we just want to KNOW what's out there (In the two plus years w/ HRC we've received NO information about ANYTHING). About that time I said, we just heard about something yesterday called "The Friendship Circle"......have you heard of that??" I ask her. "Oh yes", she replies, "Some parents find that organization really helpful, others not so much". "Well, I just found out about this yesterday, quite by accident and we're kind of interested in that", I added, hoping that at this point she'll actually TAKE THE BAIT and explain a LITTLE about what this group does here in the South Bay. She told us she thought it was in Redondo Beach. End of conversation. What more could we possibly want to know?? At this point my husband's head IS going to explode, so he excuses himself to the bathroom......or the nearest bar, I don't know.
But here's the thing we DID get from HRC: they can't offer any technical assistance (she did ask us AGAIN if we could be more specific), but we can take CLASSES on HOW to teach our 13 year old son HOW to brush his teeth, HOW to dress himself, HOW to feed himself, etc...... ARE YOU KIDDING ME??? There has GOT to be a hidden camera in this room, I just KNOW it!! (I take notes officiously and I'm sure she's thinking I really want to know more about these informative classes......really I'm taking notes so I don't forget these little nuggets for this rant). She also told us how we can take classes on safety so we can teach HIM about safety issues. Wow, if someone would have just taught me about safety and locks then maybe I could have explained it to Hayden and he wouldn't have walked out the front door of our house....TWICE!!! At one point, I turned to this woman and said, "Please know that I am not in any way being sarcastic, but in our family, we call this P A R E N T I N G......this is kind of what we do EVERY SINGLE DAY". I mean aside from reading, writing and arithmetic, we actually DO teach SELF HELP skills every single flippin' day!!!
Then she tells us about ADULT services for ya know when Hayden turns 18....in FIVE YEARS. I'm ALL for planning ahead. I WILL plan ahead, but TODAY we're talking about THIS year's IFSP. Support for this family THIS year, thank you very much.
Okay, here's the other part of the rant: she told us that we couldn't get more respite than what we have and certainly not 24 hrs/month (is 24/month the "max" # of hours in the state of CA? I seem to remember that from last year) unless both of us were working parents. So my husband says (not trying make enemies here on the list, just pointing out some institutional incongruities), "So you mean to tell me that a two parent working household whose child goes to public school six or seven hours a day, and those parents spend three or fours a night with their child (assuming the parents work traditional 8am-5pm workdays) are eligible for 24 hours a month of respite, but someone who is ALWAYS with her child who has SIGNIFICANT special needs and disabilities is in essence "lucky" to have 18 hours a month?"......to which she started back peddling and saying how she doesn't make any decisions and she just passes it along to management, etc......Then she starts telling us about how HRC runs foster homes for kids under 18.....ya know, if it just gets to be "too much". We could pick him up on the weekends. ARE YOU KIDDING ME???? How about you take a little chunk out of that $3-5K/month it takes to house a child with a developmental disability in a "foster home" (not run through the county, she assured us) and give it to PARENTS to access more respite???
Okay, that's all I can remember for now. My apologies to all of you for wasting your time with this whining rant!!.......I need to go meditate, medicate with Halloween candy, or find last night's episode of "The Middle".