Perpetuating a Meme
Sunday, October 31, 2010
This one's for Stark. Raving. Mad. Mommy. Because why go through life afraid of Stabbity Antique Nana Dolls when there are Zombie Stabbity Antique Nana dolls to worry about?
Diagnostic Limbo
Saturday, October 30, 2010
Things have been so hectic with work in recent months that this week snuck up on me. I've been waiting 6 long months for Friday, November 5th. It's Bear's 6 month follow up with his pediatric neurologist. The day we're supposed to find out if he's autistic.
The first pediatric neurologist - the same one who pretended I was not talking when I brought up SPD and wouldn't acknowledge it as a diagnosis from the EI team - literally laughed when we asked about autism. Our family sat huddled in the little appointment room, me clutching the autism warning signs checklist trying to make the doctor listen to me while Wonderful Husband tried to keep Bear distracted with goldfish crackers.
The autism checklist my daycare teacher BFF brought because she was worried. The autism checklist our pediatrician agreed applied enough that we should consult a pediatric neurologist.
Hell, the austism checklist the stranger at the park practically suggested I get my hands on when commenting on Bear's unusual behavior.
The doctor. Laughed. At me.
He even waved his hand dismissively while saying "he's not autistic." And that was that. He was done with us. I guess Bear's real problems weren't billable enough. Which was fine, because I was certainly done with him.
Fast forward to spring 2010, the first visit after a 5 month waiting list for our shiny new, best in the area pediatric neurologist.
Who, after spending quite a long time with us asking relevant questions and validating all of our concerns, blew me away when he said it was not possible to rule out autism yet.
Which I knew. Really, I did. But to hear it out loud from the good doctor was surprisingly hard.
Is there a diagnostic code for "autism: wait and see?"
Bottom line, his SPD and his dramatic social delays made him appear to be on the spectrum, so it was impossible to rule out. But this was after 6 months of speech therapy and occupational therapy and behavior therapy and he's made such tremendous progress it was reasonable to suspect there were other reason for his social delays... i.e. autism was impossible to definitively rule in.
The doctor's working theory is that the speech delay caused by the language processing disorder created the extreme social delays that made Bear behave an awful lot like a child on the spectrum. He had no capacity to communicate, so it was reasonable to assume he could not develop socially.
We were told to go forth into the world, keep up with everything the EI folks told us to do and come back in 6 months. If he starts to catch up socially, he would likely rule out autism at this visit. (If not, he already told me we will continue with wait and see.)
So... six months in is he or isn't he limbo have passed. Not a day went by that I didn't obsess over the implications of any given behavior.
On good days, it was OMG, he shared his snuggle blankie with the therapist's baby doll!
On bad days, it was OMG, he's rolling that truck nonstop and won't respond to his name!
The school district made it clear I should let them know right away if he gets an autism diagnosis. Because of the timing they could get the additional services into the evals before his IEP meeting later in November. But I feel like my bowl of alphabet soup is full... sensory processing disorder and language processing disorder and non-epileptic seizure disorder and potentially ADHD and signs of oppositional defiance disorder. Even if it gets him more school services, I'd almost rather not have more if it means another straw. Because this camel already needs a chiropractor.
I can't even say what I want the answer to be. I honestly don't know. The only thing I do know is that my Bear is my Bear and I love him as is, no matter what the paperwork says.
The first pediatric neurologist - the same one who pretended I was not talking when I brought up SPD and wouldn't acknowledge it as a diagnosis from the EI team - literally laughed when we asked about autism. Our family sat huddled in the little appointment room, me clutching the autism warning signs checklist trying to make the doctor listen to me while Wonderful Husband tried to keep Bear distracted with goldfish crackers.
The autism checklist my daycare teacher BFF brought because she was worried. The autism checklist our pediatrician agreed applied enough that we should consult a pediatric neurologist.
Hell, the austism checklist the stranger at the park practically suggested I get my hands on when commenting on Bear's unusual behavior.
The doctor. Laughed. At me.
He even waved his hand dismissively while saying "he's not autistic." And that was that. He was done with us. I guess Bear's real problems weren't billable enough. Which was fine, because I was certainly done with him.
Fast forward to spring 2010, the first visit after a 5 month waiting list for our shiny new, best in the area pediatric neurologist.
Who, after spending quite a long time with us asking relevant questions and validating all of our concerns, blew me away when he said it was not possible to rule out autism yet.
Which I knew. Really, I did. But to hear it out loud from the good doctor was surprisingly hard.
Is there a diagnostic code for "autism: wait and see?"
Bottom line, his SPD and his dramatic social delays made him appear to be on the spectrum, so it was impossible to rule out. But this was after 6 months of speech therapy and occupational therapy and behavior therapy and he's made such tremendous progress it was reasonable to suspect there were other reason for his social delays... i.e. autism was impossible to definitively rule in.
The doctor's working theory is that the speech delay caused by the language processing disorder created the extreme social delays that made Bear behave an awful lot like a child on the spectrum. He had no capacity to communicate, so it was reasonable to assume he could not develop socially.
We were told to go forth into the world, keep up with everything the EI folks told us to do and come back in 6 months. If he starts to catch up socially, he would likely rule out autism at this visit. (If not, he already told me we will continue with wait and see.)
So... six months in is he or isn't he limbo have passed. Not a day went by that I didn't obsess over the implications of any given behavior.
On good days, it was OMG, he shared his snuggle blankie with the therapist's baby doll!
On bad days, it was OMG, he's rolling that truck nonstop and won't respond to his name!
The school district made it clear I should let them know right away if he gets an autism diagnosis. Because of the timing they could get the additional services into the evals before his IEP meeting later in November. But I feel like my bowl of alphabet soup is full... sensory processing disorder and language processing disorder and non-epileptic seizure disorder and potentially ADHD and signs of oppositional defiance disorder. Even if it gets him more school services, I'd almost rather not have more if it means another straw. Because this camel already needs a chiropractor.
I can't even say what I want the answer to be. I honestly don't know. The only thing I do know is that my Bear is my Bear and I love him as is, no matter what the paperwork says.
I Could Die Happy
Wednesday, October 20, 2010
Bear popped into my room this morning, climbed in bed with his babbit and blankie in tow, and asked in the sweetest little voice "Momma, ngungle wit me?"
Maybe It Makes Me a Bitch, But I'm OK With That
Tuesday, October 19, 2010
Last week I attended a seminar called Tackling Transition put on by my local Early Intervention office. After the mini dwama surrounding my poorly coordinated transition meeting, I figured it couldn't hurt to attend the presentation to make sure my service coordinator hadn't left out anything else important. And they brought in reps from all the local school districts to allow for one on one Q&A sessions - bonus.
Recap
- Illinois state regulation is to provide parents with transition info a minimum of 6 months prior to aging out, including a transition workbook
- the workbook outlines the 6 step transition process (essentially, a serious of 6 meetings and decision points)
- my coordinator was nearly 2 months late scheduling the transition meeting
- even after I requested she provide me with any pertinent reading materials ahead of said late meeting, she said I didn't need to read anything and she'd bring the transition book to the meeting
- the meeting, it turns out, was step 3 of the 6 step transition process, and halfway through the 50 page transition workbook
The only thing that was keeping me sane was A) having gone online, found the book and read it the night before and B) the knowledge that no real decisions are supposed to be made at the transition meeting.
Except that at my transition meeting, they essentially did the Domain Review (step 4 of 6 in the book) and decided to move forward with granting him evaluations! A genuine reason to be upset about not being provided with ANY information ahead of time. A HA. YUGE. decision about his future was made in the "meeting where nothing would be decided" and that my coordinator claimed I did not need to be prepared for. Thankfully it was a decision in his favor, and the best one I could have hoped for.
So. It's the Q&A at the end of the transition seminar and I'm waiting in line to check in with my school district contact. And I notice the presenter - who happens to be the head of the entire EI program - had no one to talk to.
I'm not afraid to talk to anyone for a friendly chat, but I will chew off my arm to avoid any kind of confrontation. I stood there in the meeting room for several minutes - most likely looking like a crazy person - while the voices in my head debated telling her about my experience.
I opted for telling her.
I told her I didn't want to get anyone in trouble, just that I felt it was important they understand what a traumatic experience it had been for our family. I explained how it went down, and that I happen to be a detail oriented, by the book person who sought out the information on my own because I am nuts that way. I explained that the average parent was not going to be digging into obscure department of education websites at midnight trying to get the information we'd been deprived of. The average family is going to trust the coordinator, walk into that meeting blind and feel like they were hit by a truck.
I let her know how the meeting went, that decisions were made I should have been prepared for by my coordinator (not to mention the reading material I'd been denied) and that I was very concerned other families might be having the same experience.
She was genuinely surprised that I didn't get the book - she said their goal really is to get it to us a minimum of 6 months in advance. She apologized profusely and said she hoped it was an isolated incident. (Which I can guarantee it's not, because it was obvious my coordinator's MO is to present families with that book at that meeting. The fact that she declined to provide it earlier upon direct request was evidence of that.)
I also told her that my coordinator has never returned a call for anything, and that after no fewer than 4 messages from me and a calling campaign from our therapists on my behalf, she still failed to remove our son's former neurologist from his EI records, and it was my vigilance at the latest meeting that prevented her from sending the records to the wrong doctor yet again.
The boss asked "do you mind if I ask who your coordinator is?"
I hemmed and hawed and finally, reluctantly, gave up the name of my coordinator to her boss.
And as bad as I thought I'd feel about it... I drove home with a clear conscience. Thisbleach blonde bubble headed fake 'n baked fresh out woman holds the futures of countless toddlers in her hands. If she's going to suck at her job this badly, I guess someone needed to call her out to keep her from continuing to be a huge source of stress to the families she's supposed to be helping.
Maybe it makes me a bitch to have ratted her out, and I might feel a twinge if she loses her job. But she's supposed to be looking out for the kids, and she's not. So. Game over.
Recap
- Illinois state regulation is to provide parents with transition info a minimum of 6 months prior to aging out, including a transition workbook
- the workbook outlines the 6 step transition process (essentially, a serious of 6 meetings and decision points)
- my coordinator was nearly 2 months late scheduling the transition meeting
- even after I requested she provide me with any pertinent reading materials ahead of said late meeting, she said I didn't need to read anything and she'd bring the transition book to the meeting
- the meeting, it turns out, was step 3 of the 6 step transition process, and halfway through the 50 page transition workbook
The only thing that was keeping me sane was A) having gone online, found the book and read it the night before and B) the knowledge that no real decisions are supposed to be made at the transition meeting.
Except that at my transition meeting, they essentially did the Domain Review (step 4 of 6 in the book) and decided to move forward with granting him evaluations! A genuine reason to be upset about not being provided with ANY information ahead of time. A HA. YUGE. decision about his future was made in the "meeting where nothing would be decided" and that my coordinator claimed I did not need to be prepared for. Thankfully it was a decision in his favor, and the best one I could have hoped for.
So. It's the Q&A at the end of the transition seminar and I'm waiting in line to check in with my school district contact. And I notice the presenter - who happens to be the head of the entire EI program - had no one to talk to.
I'm not afraid to talk to anyone for a friendly chat, but I will chew off my arm to avoid any kind of confrontation. I stood there in the meeting room for several minutes - most likely looking like a crazy person - while the voices in my head debated telling her about my experience.
I opted for telling her.
I told her I didn't want to get anyone in trouble, just that I felt it was important they understand what a traumatic experience it had been for our family. I explained how it went down, and that I happen to be a detail oriented, by the book person who sought out the information on my own because I am nuts that way. I explained that the average parent was not going to be digging into obscure department of education websites at midnight trying to get the information we'd been deprived of. The average family is going to trust the coordinator, walk into that meeting blind and feel like they were hit by a truck.
I let her know how the meeting went, that decisions were made I should have been prepared for by my coordinator (not to mention the reading material I'd been denied) and that I was very concerned other families might be having the same experience.
She was genuinely surprised that I didn't get the book - she said their goal really is to get it to us a minimum of 6 months in advance. She apologized profusely and said she hoped it was an isolated incident. (Which I can guarantee it's not, because it was obvious my coordinator's MO is to present families with that book at that meeting. The fact that she declined to provide it earlier upon direct request was evidence of that.)
I also told her that my coordinator has never returned a call for anything, and that after no fewer than 4 messages from me and a calling campaign from our therapists on my behalf, she still failed to remove our son's former neurologist from his EI records, and it was my vigilance at the latest meeting that prevented her from sending the records to the wrong doctor yet again.
The boss asked "do you mind if I ask who your coordinator is?"
I hemmed and hawed and finally, reluctantly, gave up the name of my coordinator to her boss.
And as bad as I thought I'd feel about it... I drove home with a clear conscience. This
Maybe it makes me a bitch to have ratted her out, and I might feel a twinge if she loses her job. But she's supposed to be looking out for the kids, and she's not. So. Game over.
Sensory Activity - Fun With Spinners
Tuesday, October 5, 2010
One of the perks of living in Chicagoland is stumbling across things like tent sales where educational product companies are unloading warehouse stuff at ridiculous prices.
One of the things I scored recently was a six pack of game spinners for 50 cents and a Dinosaur Bingo game (with dinosaur spinner!) for 99 cents. I didn't really know what I would do with them, but I knew they were worth picking up.
It occurred to me that the colors on one of the spinners mostly matched the colors of the giant bin o' pit balls Bear got for his 2nd birthday. And I recalled that his OT often has the kids go up and down the hall to perform some activity at either end.
Thus was born the ball game.
1) Spin the colored spinner at one end of the room/hall
2) Run down to the bin to retrieve a matching ball
3) Run back to other end and deposit ball (another bin, box, etc)
Bear thought it was great. He also thought it was the height of comedy to bring back the wrong color on purpose (while insisting orange was blue), or to bring back two balls instead of one, so he was in a good mood and easier to direct. He got a kick out of spinning the spinner, and when we were done his reward for following directions was to sit in the big bin while I poured balls over his head.
Next goal is to play the game with multiple kids and work on his turn taking. And I hope to incorporate a scooter like his OT does as soon as I get around to ordering it.
I'm definitely looking for ideas for other spinner based activities. I already realized I can use the three color one to play Red Light/Green Light (though he's not ready for it yet). I was also happy to notice we can swap the 6 number spinner out for die in some games (he can handle things like Cooties and Candyland, but isn't really clear on counting dots yet. Plus, he tends to throw dice around the room).
Any suggestions?
One of the things I scored recently was a six pack of game spinners for 50 cents and a Dinosaur Bingo game (with dinosaur spinner!) for 99 cents. I didn't really know what I would do with them, but I knew they were worth picking up.
It occurred to me that the colors on one of the spinners mostly matched the colors of the giant bin o' pit balls Bear got for his 2nd birthday. And I recalled that his OT often has the kids go up and down the hall to perform some activity at either end.
Thus was born the ball game.
1) Spin the colored spinner at one end of the room/hall
2) Run down to the bin to retrieve a matching ball
3) Run back to other end and deposit ball (another bin, box, etc)
Bear thought it was great. He also thought it was the height of comedy to bring back the wrong color on purpose (while insisting orange was blue), or to bring back two balls instead of one, so he was in a good mood and easier to direct. He got a kick out of spinning the spinner, and when we were done his reward for following directions was to sit in the big bin while I poured balls over his head.
Next goal is to play the game with multiple kids and work on his turn taking. And I hope to incorporate a scooter like his OT does as soon as I get around to ordering it.
I'm definitely looking for ideas for other spinner based activities. I already realized I can use the three color one to play Red Light/Green Light (though he's not ready for it yet). I was also happy to notice we can swap the 6 number spinner out for die in some games (he can handle things like Cooties and Candyland, but isn't really clear on counting dots yet. Plus, he tends to throw dice around the room).
Any suggestions?
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