I imagined returning from my writing hiatus and telling you about dancing in the dirt at Salmonfest, or catching 50 Sockeye on the shores of the Kenai with our hippo-sized nets, or making a giant nest out of Alder and Spruce on our land above Resurrection Bay, as we work towards clearing a space for a home on the edge of mountains and sea...
But I got a phone call that changed all that.
"...so I wanted to talk about Elias's plan of care for the year..."
BANG.
From slow easy breathing, fueled by a salty breeze, to nails all peeled as I try to piece together an alternative before and after-school plan.
It seems Camp Fire can no longer serve Elias due to his complex needs, this after five-years of continuity and saving grace.
"I don't want to go to school..."
"But then you won't get to go to Camp Fire and see Ms. Myrna..."
Ah, but Ms. Myrna retired. An event that's been publicized (and dreaded) for over a year.
("Can't you just wait till Elias finishes sixth grade. I'll pay you extra, just kidding, but really, I mean, could you...?")
During this phone call, I learn the new site director doesn't come with the same skills as Myrna to work with Elias; the administrator tells me Myrna had been operating outside of their general policies, which they can't now change to accommodate my son.
And why didn't this conversation happen last Spring, when I celebrated the retirement of our beloved Ms. Myrna, and registered Elias with Camp Fire for the 2015-2016 school year?
Every year I submit his Plan of Care to the main office. Every year I describe in detail all of his needs.
I hide nothing.
Why now? In August? When my time is no longer mine? With only mere days left of summer to develop a plan B?
Bullshit.
This is how it goes as the parent of a child with special needs.
Just when you think you have a plan to make it through, something changes, and you find yourself in front of a computer, or with a pile of papers scattered across the kitchen table, or both, writing about all his issues for the thousandth time, so you can try to get some level of assistance, and you feel torn to pieces wondering why you have to describe all the hardships in letters that limit the child you can't define, and if you are asking too much for others to accept him based on the deficits you describe.
Torn to pieces.
This is how it goes, over and over.
And over again.
OMG guys, I'm so sorry to hear this. Please share a hug and a kiss with each of the kiddos for me.
And...
Save a big, long bear hug for each of the two of you.
I miss you both and am looking forward to stopping in to say hi unexpectedly next year!
Posted by: Dave Selinger | 08/13/2015 at 11:41 PM
They told you they couldn't help you, but they didn't offer an alternative? What the heck? That stinks. Around here, high school students need volunteer hours to graduate, so they take on service-learning projects. I wonder if there are any high schoolers who want to be special ed teachers who could help? Just brainstorming. Good luck!
Posted by: Tabatha | 08/14/2015 at 12:17 AM
This just sucks. I'm sorry.
Posted by: Janie Henderson | 08/14/2015 at 12:22 AM
I am so distressed to hear of your struggles. I will carry you and Elias in my heart.
Posted by: Lois Galgay Reckitt | 08/14/2015 at 02:49 AM
What about your public school? They have to accommodate his IEP by law.
I know its not the answer you are looking for, but believe me I feel your pain!
Posted by: Lexie | 08/14/2015 at 03:37 AM
Camp Fire is the before and after care program at his public school where I work. So our current plan while I look for an alternative after-school setting is that he can still attend Camp Fire but I am on call to change him when needed b/c they wont do diaper changes anymore. One of my staff members told me yesterday that Myrna had told her that CF had said last year that Elias would be out of the program if she wasn't there due to behavior issues (he scratched a girl once and the parents complained). None of this was communicated to me. So yes, I'm frustrated. They also said he can attend if we had one on one support for him which we don't currently have outside of the school day. So we are ammending out state plan of care to try to get Day-Hab hours (a 45 day process at least) and we applied for the Arc of Anchorage which offers an after school program for middle school kids with special needs and my thought is he can be in my office in the morning. What sucks is Olive is starting Kindergarten and is signed up for Camp Fire and I'm not looking foreward to a pending conversation with Elias about why she is in Camp Fire and he will no longer be attending once a new plan is in place. And I'm back at work as of yesterday.
Posted by: Christy | 08/14/2015 at 08:06 AM
I can't believe the hoops you have to jump through when you are already taxed by a son with special needs. The system is so backwards! I know you are swamped. Remember to breathe, call on those new friends you met at "camp" since they may have been where you are right now and know that this community of yours is thinking about you and sending love. Sometimes, that is all we can do.
Posted by: fleming ackermann | 08/14/2015 at 10:26 AM
Is this even legal. Isn't he covered by ADA? A 1/1 strikes me as a reasonable accommodation. I know you are in a somewhat awkward position because of your job, but a little pushback couldn't hurt.
Posted by: jwgmom | 08/14/2015 at 11:59 AM
Sucks. I'm with Fleming that maybe some of the camp people have some recommendations? Some kind of expedited approval process on the 1:1 coverage? Other local students studying special ed at college level? Is there a written policy that supports this decision by school program??? I don't know but so sorry you are juggling this after a great time away and coinciding with the whole back to school/work thing. Hugs.
Kate
Posted by: Kate | 08/14/2015 at 01:56 PM
I have been thinking about you and this crappy turn of events all week. I am so sorry it happened and for the awful timing! I wish there was more I could do rather than hold you all in my thoughts. I hope you can feel the empathy (from a stranger, no less) over the 'net.
Posted by: Kristen H | 08/21/2015 at 07:10 AM
I realize I'm late to the game here, but I'm so saddened when I hear that kids with special needs are just discarded or discounted, like things can be rearranged easily. One would think after 5 years and the relationship I'm sure you've cultivated with the caregivers, someone would be open to helping more. Either way, I hope Elias can get what he needs and what he deserves.
Posted by: Shelley | 08/22/2015 at 05:43 AM