Tomorrow I am spending the day looking into the faces of the people who decide my son's present and future status. Part of a newly created work group to determine just how the System shall work once the Bring the Kids Home Initiative funds run out in 2013 (I was off on that last post), I have been asked to be a part of the conversation.
It's been a long time since I have been privy to decision-making on a state level; before I was the provider looking to preserve my own industry's interests as they related to the vulnerable adults I served, now I represent a host of vulnerable children...
I'm curious, I'm skeptical, I'm encouraged, all at the same time. Does that sound strange?
Sunday, April 25, 2010
Friday, April 23, 2010
So What CAN You Do?
In an interesting turn-about from the positive vibes I felt at my Alaskan Behavioral Health Provider Powow last week, I received an email from another provider today (like, three weeks after I sent my message. Yeah, you're busy; we're all busy, sweetheart...whine at somebody who is not your potential client.).
Here is what I read. "I just talked with So-and-So who is in charge of our intake systems and she has not heard about your son, but it is somewhat irrevelant because we don't have any more money for the wrap-around services you are seeking, anyway." Of course, these were not the exact words, but you get the gist. "Has not, can not, do not." The words of the provider in Alaska, the very same providers, I might add, who are responsible for taking care of not only my son, but the 249 other sons and daughters who remain in out-of-state care until 2012, when the Bring the Kids Home money runs out and we are all in trouble.
I am very tired of the word "No". It is interesting to me that so many agencies and providers focus a grand effort on "person-centered" speaking, i.e. "A child who happens to have Asperger Syndrome" rather than "Your Asperger's child", but they forget about the word "No".
I told Ms. M from the State of Alaska that it would be so incredibly helpful if anyone and everyone who works within the realm of social services could begin their conversations by saying what they DO, instead of what they DO NOT.
Imagine the potential for progress rather than regress, hmmmm?
This mom needs an adult beverage and some quiet time in a place where there will be no "No". If only for a while...
Here is what I read. "I just talked with So-and-So who is in charge of our intake systems and she has not heard about your son, but it is somewhat irrevelant because we don't have any more money for the wrap-around services you are seeking, anyway." Of course, these were not the exact words, but you get the gist. "Has not, can not, do not." The words of the provider in Alaska, the very same providers, I might add, who are responsible for taking care of not only my son, but the 249 other sons and daughters who remain in out-of-state care until 2012, when the Bring the Kids Home money runs out and we are all in trouble.
I am very tired of the word "No". It is interesting to me that so many agencies and providers focus a grand effort on "person-centered" speaking, i.e. "A child who happens to have Asperger Syndrome" rather than "Your Asperger's child", but they forget about the word "No".
I told Ms. M from the State of Alaska that it would be so incredibly helpful if anyone and everyone who works within the realm of social services could begin their conversations by saying what they DO, instead of what they DO NOT.
Imagine the potential for progress rather than regress, hmmmm?
This mom needs an adult beverage and some quiet time in a place where there will be no "No". If only for a while...
Wednesday, April 21, 2010
From the Wolf Den: "You've Got a Friend?"
For our family, the most heartbreaking manifestation of Asperger Syndrome is the severe absence of social skills #1 Son displays. We're certainly not alone; parents often report that a lack of friends, especially around the middle school years, was the sign that led them to seek professional help (for their children).
The stories strike an astonishingly similar chord with all of us, and while they don't make me feel particularly better with respect to our own individual child, hearing someone else talk about the school bullies, or the exclusionary tactics of kids, or labels means we have an alliance. And alliances sometimes are what we need as parents to move ahead instead of behind.
Friends are important. Think back to someone you have known for a long, long time. I have two such friends who I have known since preschool. Preschool! That's over 35 years. We've walked the malls, ridden our horses, danced to INXS, scrapped on minute and shared the next, but always, always, we've been friends. Now we lean on each other in adult ways; offering support for troubling life changes, sharing a virtual cheers when one of us turns 40, and knowing with all certainty that should something happen, the others would be there, because that's what we do.
Wolf doesn't have that person.
When kids are little, we sort of force them to play with each other. Moms gather for coffee while our kids stumble around, battle over toys and a few years later each other's "best friends". When kids are school age and able to discern what they want in a friend (hopefully positive), children with Asperger Syndrome are suddenly on the outside, even within the Mom-Coffee circle of kids he or she has "played" with since infancy. We don't feel as if we can force our chidren to play together, yet it is so heartbreakingly maddening to be a parent on either side, I am sure.
Yukon and I are raising Bear to be more sensitive to all kids' differences, and yet we notice now that at five he does decide who he wants to play with, or not. He is well-liked by everyone, a switch from Wolf's childhood, but I want him to understand how difficult friendship can be for some people. I want him to understand how it feels to be on the outside looking in, and to be a friend. A true friend, if even for an hour.
Kindness is a family value.
The stories strike an astonishingly similar chord with all of us, and while they don't make me feel particularly better with respect to our own individual child, hearing someone else talk about the school bullies, or the exclusionary tactics of kids, or labels means we have an alliance. And alliances sometimes are what we need as parents to move ahead instead of behind.
Friends are important. Think back to someone you have known for a long, long time. I have two such friends who I have known since preschool. Preschool! That's over 35 years. We've walked the malls, ridden our horses, danced to INXS, scrapped on minute and shared the next, but always, always, we've been friends. Now we lean on each other in adult ways; offering support for troubling life changes, sharing a virtual cheers when one of us turns 40, and knowing with all certainty that should something happen, the others would be there, because that's what we do.
Wolf doesn't have that person.
When kids are little, we sort of force them to play with each other. Moms gather for coffee while our kids stumble around, battle over toys and a few years later each other's "best friends". When kids are school age and able to discern what they want in a friend (hopefully positive), children with Asperger Syndrome are suddenly on the outside, even within the Mom-Coffee circle of kids he or she has "played" with since infancy. We don't feel as if we can force our chidren to play together, yet it is so heartbreakingly maddening to be a parent on either side, I am sure.
Yukon and I are raising Bear to be more sensitive to all kids' differences, and yet we notice now that at five he does decide who he wants to play with, or not. He is well-liked by everyone, a switch from Wolf's childhood, but I want him to understand how difficult friendship can be for some people. I want him to understand how it feels to be on the outside looking in, and to be a friend. A true friend, if even for an hour.
Kindness is a family value.
Saturday, April 17, 2010
What a (Kid's) Day!
Today we had a barrel of fun down at the Anchorage Kid's Day festival. I helped staff a booth for Get Outdoors Anchorage, a coalition of agencies and organizations committed to getting families outside together. It is a new mission of mine at AKontheGO, and a worthy one, I think.
Yukon and Bear accompanied me downtown and wandered among the booths for a while before going off on their own missions. After lunch they picked me up and we went to the Alaska Aviation Heritage Museum, which was free today in honor of the Kids. Bear had a blast like he always does, climbing in and on everything he could, including the engine of a scuttled 737. He was a little worried that the plane would start up and carry him off, thus the interesting expression on his face!
I'm about done in; Yukon and I are listening to some lovely classical music and drinking the first margaritas of the season. We're trying for summer here, even though we have snow still clinging on the ground. Grr.
Thursday, April 15, 2010
From the Wolf Den: The Power Play
Ever been invited to a group interview? You know, those hiring sessions where you dress up really nice, carry a manilla folder under one sweaty armpit and wear your butt-kicking glasses so you look smarter? Yeah, that was me today, minus the hiring part.
In all fairness to the wonderful care providers and Ms. M from the State of Alaska, who has turned out to be more of an ally than I could have possibly believed, my time spent pitching Wolf's diagnoses, behaviors, and attributes was not as horrid as I spent most of last night imagining. It even had brief moments of hilarity.
Wolf has become famous among some local providers simply because of his unique issues and their relation to what is or is not available in the greater Anchorage area. I guess that's something to be thankful for; everyone will certainly know his name. I of course made this even more obvious by creating the "Wolf Spec Sheet", featuring a cheesy photograph and his name, age, and a bullet-pointed list of all the above items (I had to, what if, in the heat of the emotional moment of advocating I forgot something?) smartly lined up below. The squeaky mom gets the referral, right?
Many of these providers were quite anxious to meet the woman who birthed this child, i.e. Me, and they were leaning forward in their chairs practically drooling as I explained (in 20 minutes or less) our family life with this child since his First Day on Earth. Try it yourself; not too easy, is it?
Two individuals in the room were less inclined to appear as interested, even though they were the people to whom I had to convince of Wolf's inabilty to come home just now. They were: The State Medicaid Insurance Care Coordinators. Ah, Caseworkers for Quality. I believe my snarkiness at the beginning of the meeting set the tone when, as I was introduced to them by Ms. M, said, "Wow, there are actually people in that office". Too much, maybe? Frankly dear rule-setters, I could care less. At any rate, they sat there like two Depression era farmers who've just been told the homestead is up for auction. I'm not even sure they were real.
It was a productive gathering; I was humbled by the level of concern exhibited by these folks who truly backed me up, a nice feeling. Some initial plans were laid, some fears put to rest, and by the end of my 30 minutes of question and answer, I was able to take my leave without any wadded-up kleenex in my pockets. I count that as a major victory. Mom didn't open the floodgates.
The things we do for our kids, huh?
In all fairness to the wonderful care providers and Ms. M from the State of Alaska, who has turned out to be more of an ally than I could have possibly believed, my time spent pitching Wolf's diagnoses, behaviors, and attributes was not as horrid as I spent most of last night imagining. It even had brief moments of hilarity.
Wolf has become famous among some local providers simply because of his unique issues and their relation to what is or is not available in the greater Anchorage area. I guess that's something to be thankful for; everyone will certainly know his name. I of course made this even more obvious by creating the "Wolf Spec Sheet", featuring a cheesy photograph and his name, age, and a bullet-pointed list of all the above items (I had to, what if, in the heat of the emotional moment of advocating I forgot something?) smartly lined up below. The squeaky mom gets the referral, right?
Many of these providers were quite anxious to meet the woman who birthed this child, i.e. Me, and they were leaning forward in their chairs practically drooling as I explained (in 20 minutes or less) our family life with this child since his First Day on Earth. Try it yourself; not too easy, is it?
Two individuals in the room were less inclined to appear as interested, even though they were the people to whom I had to convince of Wolf's inabilty to come home just now. They were: The State Medicaid Insurance Care Coordinators. Ah, Caseworkers for Quality. I believe my snarkiness at the beginning of the meeting set the tone when, as I was introduced to them by Ms. M, said, "Wow, there are actually people in that office". Too much, maybe? Frankly dear rule-setters, I could care less. At any rate, they sat there like two Depression era farmers who've just been told the homestead is up for auction. I'm not even sure they were real.
It was a productive gathering; I was humbled by the level of concern exhibited by these folks who truly backed me up, a nice feeling. Some initial plans were laid, some fears put to rest, and by the end of my 30 minutes of question and answer, I was able to take my leave without any wadded-up kleenex in my pockets. I count that as a major victory. Mom didn't open the floodgates.
The things we do for our kids, huh?
Wednesday, April 14, 2010
I'm in a Time Warp
It's really January, right? Or perhaps even further back, like December? Perhaps if this snowstorm dumping 10+ inches of wet, sloshy, slushy stuff in my yard came then, I might be inspired to make carmel corn, turn up my Ray Coniff singers, and dance to the advent of winter.
As it is I, along with most of Anchorage, am grumpy (even grumpier than I was the other day). We're ready for spring. Like real spring. When it doesn't snow anymore.
I'm staring out my window at fat, fluffy snowflakes bigger than cookies. Yes, cookies.
Yukon even came home early to commiserate with me. Such a nice person. He didn't even mind coming home to find the dog snoozing on his side of the bed.
The photo above was taken around 9 a.m as I shuttled Bear to preschool, just before I took myself to my favorite coffee shop to drown my sorrowful state in a 16 oz Alaska Chai and a bagel.
Tuesday, April 13, 2010
From the Wolf Den: Circling the pack
Thursday begins the journey for Wolf's future. At high noon I will march into an office and speak to the value of CHYC for Wolf now, and the importance of appropriate services in the coming months and years.
The meeting is one by which all State of Alaska caseworkers, service providers, and clinicians gather together to talk about their current case load. Sometimes they invite parents of "hard to place" children. I'm still not altogether clear on my expected behavior at this high-powered powwow. Should I fall on my knees and beg the State not to bring my son home until they can guarantee his health and safety (believe me, I've thought about it)? Do I put on my social services hat and remind them that they agreed to be responsible for said child's health and safety when they accepted him into the State's Medicaid program in order to allow for his admission in to CHYC? I've thought long and hard about my approach, and one thing keeps bugging me and gnawing at my sense of logic.
None of these people have ever met my son. Not one. Ever. And all the positive intentions and warm fuzzies about providing Wolf with appropriate services if the State decides to discontinue paying for his treatment will mean nothing if they cannot make the effort to know him. Not just about him; but HIM.
Subscribe to:
Posts (Atom)