Tomorrow we have our IEP meeting, when (hopefully) we will sign the paperwork that puts Maya in the preschool that we really like, and then a big weight will lift off our shoulders. :)
A few months ago we had the preliminary IEP meeting, in which I clashed with the CPSE official. I said that I wanted a bunch of after school therapies approved, he said that we should just start school and then come back with the school team in the fall if we all think Maya would benefit from more therapy. I said that wasn't good enough (because really, with her evaluation results, she should totally qualify for additional services). He said too bad (basically). I ordered IEP books and planned a fight.
And then I changed my mind.
I asked questions of our therapists, and then spoke with other families whose children started preschool this past fall. I researched. I thought about school starting, schedules changing, no naps (the preschool doesn't have naptime), and realized that I only want Maya to have therapy maybe twice a week after school. Then, I decided that the afterschool therapy we need to keep is the private oral motor stuff, which targets both feeding and speech (the therapist is PROMPT certified, for those who know/care about speech stuff). She'll be getting OT, PT and speech at school, and I feel like her OT and PT needs are more typical than her oral motor issues. That's where we'll need an afterschool specialist.
I don't make decisions lightly. There was ruminating. There were eyes-filling-with-tears. There was anxiety.
Because if your child has special needs, you think a lot about needs. The need for PT to address balance, walking, climbing stairs, core muscles, etc. The need for OT to address fine motor skills, eventually holding a pencil, dressing and undressing, etc. The need for special instruction to address play skills, attending to activities, interactions, etc. The need for speech & feeding to address, well, speech & feeding. And it's very difficult to determine which things are most important, which ones to focus the most energy on . . . but you have to make those choices, because it's really hard to work on all of them, all the time.
But we made our decision, and we're ready to (hopefully) sign for the school! And we're excited! And hoping that it goes smoothly! (Send good thoughts, the meeting is at 9 tomorrow morning.)
And when I was telling someone (someone lovely, who only has Maya's best interests at heart---someone who meant totally no ill will at all) that we're going to sign for the school and not argue for afterschool services right now (although I'm keeping an open mind about meeting in Oct/Nov to add services in) this person said, "You're only going to take what the school offers?" And I said "Yep." And they said "I think you should do more."
(I think I clenched. Then it started to echo in my head.)
I think you should do more.
(and then my stomach dropped)
First off, Maya has a lot of people in her life. She has 5 therapists (and another 3 that we used and then parted ways with), 6 doctors (and another 3 that we used and don't currently need), and a bunch of family and friends, too. The decisions that Dave & I make on her behalf might not be everyone's ideal choices . . . but frankly, this isn't a democracy. When I was thinking through our options, I asked for opinions and advice from the members of our team . . . but I'm not polling the crowd for votes. We're the parents, it's our decision. This is our life.
I think you should do more.
Second, this is our life. Life.
Where does the balance fall between life and therapy? It's a tough question, isn't it? For the past 2 years, therapy has filled a large percentage of Maya's life (and I wouldn't change that if I had to redo it. She loves the therapists, they love her, and she's making great progress). We have 17 units of therapy each week . . . and when someone asks if we want to get together, I have to sheepishly explain that we're only free from 10:10-10:50 on day A, or from 12:15-1:15 on day B. Despite the fact that Maya is only 2 and I'm a stay at home mom, we are constantly busy. We are a revolving door of therapies and doctors appointments. Since Early Intervention is a birth to 3 program, it was easy to think "3 years of intensity----we'll do everything we possibly can!" (I even left work, remember?)
But now we're leaving EI and going into the school system. And I'm starting to wonder . . . how long is this race? It's certainly not a sprint anymore . . . is it a marathon? A half marathon? How many years will Maya need therapies for?
And in looking at a longer road, it's time to think more about the balance.
Because I certainly don't want to look back and wish that we did more.
I think you should do more.
I think we should do more, too.
More time for playdates in the neighborhood.
More time giggling at dogs in the dog park while Parker runs and we enjoy the sunshine.
More time walking at a leisurely pace (and less time glancing at my watch to see if we need to race back for therapy).
More time at the playground, or sitting on a blanket in the park.
More time for Maya to walk outside (instead of throwing her in the stroller because we don't have time).
More time to play at night before a super tired little new preschooler has to sleep.
More time for spontaneous trips---the zoo? the museum? the grocery store?
More time when it's just the 3 of us.
More time, more time, more time.
Not only am I thinking about Maya's therapy goals, I'm thinking about her life. And our lives. And I want to celebrate in September, and get her off the bus and play . . . not think "I'm sorry you're so tired honey but let's just hop in the car and run over to your PT/OT session."
She will (hopefully) be going to a wonderful school where she will be learning and developing from 8:30-2 every day, surrounded by adults who are highly trained in working with children with special needs.
So how about after she gets off the bus, 3 days a week she'll be therapy-free and just get to be a 3 year old girl?
How about we don't stretch her to the point that she's asleep or in tears by the time Daddy gets home?
How about no more frustrated tears for me when I can't figure out what to cancel in order to fit in an appointment, or a playdate, or a birthday party?
How about we stop racing, and try to hit a sustainable stride?
So here's to tomorrow, when we will hopefully have a simple, amicable, stress-free meeting, the papers will be signed, and our spot in the wonderful preschool will be secured.
And (hopefully) here's to next year, Maya's first year of school, where we will walk the tightrope of therapy life and real life, and make steady progress and lots of memories.
Showing posts with label early intervention. Show all posts
Showing posts with label early intervention. Show all posts
Thursday, March 31, 2011
Wednesday, February 9, 2011
You gotta fight (!) . . . for your right (!). . . to party (?)*
My new books arrived in the mail today . . .
. . . watch out, Mr. "You don't have the right to that, I only have to give you a school placement." Now two of us will know the laws.
Or at least one of us will.
Come to think of it, you seemed confused on some of the details. I could bring them to the meeting in case you need a refresher.
:)
Also, I put up a new poll. Be interactive, chime in---it only takes a second (or two), and it makes me happy to see votes come in (you know, like there are really people out there).
. . . watch out, Mr. "You don't have the right to that, I only have to give you a school placement." Now two of us will know the laws.
Or at least one of us will.
Come to think of it, you seemed confused on some of the details. I could bring them to the meeting in case you need a refresher.
:)
Also, I put up a new poll. Be interactive, chime in---it only takes a second (or two), and it makes me happy to see votes come in (you know, like there are really people out there).
Tuesday, December 14, 2010
And go round and round and round in the (ridiculous insurance) circle game*
If you "like" us on Facebook, you have been privvy to a few random I'm-going-to-crawl-into-a-hole-and-die-because-I-can't-handle-dealing-with-the-insurance-company rants.
It's got me thinking (more) about all of the bureaucratic nonsense that parents of children of special needs end up dealing with. Yeah, I know that many people without kids with SN have insurance wars, and many people deal with other bureaucracies . . .but it can become (literally) a full time job for parents of children with special needs. And, referring back to the learned helplessness model that I'm such a fan of, it's hard to keep trying to fight the shocks. Last night when Dave got home I took a long, hot shower and had cookies and wine for dinner, because I was ready to just give up. (Thanks to the KIPP cookie exchangers for providing my dinner ;) )
If you are lucky enough to not understand what it means when someone says that they're "fighting with the insurance company", or if you don't understand why it would be stressful to just make a few phone calls, I hope that the saga below will help to shed some light:
Background:
Maya gets a lot of therapy, most of which is through the state's Early Intervention program. However, we also supplement with private speech & feeding therapy, which we pay for out of pocket. Insurance reimburses us for about 1/3 of what we shell out (don't get me started on the additional expenses of having a child with special needs). Once we have a statement (EOB) from the insurance explaining what they will or won't pay, we can take money out of our FSA (a special account that we pay into at the start of each year, tax free, and can use only for medical expenses). Without those EOBs, our money is stuck in the account. If we don't submit EOBs to use it, we lose it.
The Saga:
I submitted a bunch (60ish) claims back at the end of Sept. Some were processed, some just seemed to disappear (meaning that I never heard anything about them, whether they were approved or denied). I've now spoken to different representatives about these claims a bunch of times---each time "something" is wrong with them, preventing them from being processed at all.
Call #1 : The first time I called, they "didn't have the provider's name and address"---but when I spoke to a representative and explained that all of that information was on the receipts that I sent in she was then (miraculously) able to see it. She then submitted them for re-processing.
My thoughts: Hooray! That was easy to fix. Now I'll just wait a few weeks for checks to come in the mail.
Call #2: The second time that I called they said that the person who resubmitted them the first time did it incorrectly, so we had to re-do everything from the first call.
My thoughts: Argh! It's annoying that I waited all this time thinkng that it was being processed! Oh well, at least now it seems like everything is fixed, and I just need to wait a few weeks for checks to arrive.
Call #3: The third time they said that the problem wasn't the missing address information, it was that they felt like the therapist wasn't qualified to provide feeding therapy (because her letterhead says "speech pathologist"). I pointed them towards 2 other claims that I had submitted and they had paid. She agreed that it didn't make sense, and put them all through for re-submission, again. She said that she would mail me EOBs that said the claims were denied, so that I could submit them to the FSA. This phone call took 47 minutes, as we had to individually identify each date of service and claim (it's a good thing I've learned to keep good records).
My thoughts: What the hell-o goes on at these places? How is it even possble that there are so many issues with these claims? I'm starting to suspect that things are done incorrectly intentionally so that eventually I will give up. Or be committed to a mental institution. It's a good thing this girl was so helpful, she'll at least get those EOBs out to us tomorrow so that we don't lose our FSA money. If I don't get them in the mail in the next few days I'm going to call and check.
Call #4: The fourth time I called, the person said that we couldn't get EOBs in the mail because our account was now paperless (I'm 100% sure that this is another stalling tactic. We never changed our account to paperless. I have statements that were mailed to me in Oct, but in Nov they started posting notices to our "online insurance account"--which I had never even heard of prior to this call. WHAT THE HELL? ). She also said that they would never agree to mail 36 EOBs without something in writing. When I offered to fax in something she said that wouldn't work. Then I had a crying, cursing mental breakdown on the phone and got the supervisor :) I faxed over 50 pages (that I had previously mailed in) to the supervisor. She said that she would try to figure out some way to help.
My thoughts: IswearonallthatiisholythatifiknewwherethisofficewasiwouldbetherecampingoutwithmywhinytoddlerandchangingherdiapersonsomeonesdeskandsingingwheelsonthebusandrowrowrowyourboatallthelivelongdayIfyoupeoplemakemelosemyFSAmoneyIwillcallyou3tmesadayeverydayfortherestofeternity.
Call #5/6/7: The 5th-6th-7th times I called, the supervisor dodged my calls.
My thoughts: Shocker. I think they may be starting to realize that I've crossed the line from "Overwhelmed victim of this company" to "Angry and annoying client who won't. ever. stop."
Call #8: The 8th time that I called, the supervisor saw that all of the claims are in the limbo of resubmission (for the umpteenth time). She emailed the manager to see if there was a way to print EOBs for the ones that have been denied and send them to me. I still don't think that this will help with th 36 claims that are in limbo.
My thoughts: I'm coming to the realization that the "supervisor" does not seem to be much more capable of getting things done then the call answering folks. But at least now I have a name, and I get to the same person each time.
Call #9 (today): Supervisor dodged my call
Call #10 (today): Supervisor said that her manager emailed her back, but it was a secure, encrypted emal so she couldn't open it. So she emailed the manager back and asked her to re-email it but not in a secure encrypted way so that she would be able to open it.
My thoughts: Ok, now you're just making shite up. There's not even a remote possibility that any of that is legit.
So, there you have it. In my humble opinion, the insurance company is deliberately giving me the run around, trying to wait me out.
It's maddening.
Literally.
And every time that I get out my notes and stack of papers to call, I think of one of my old favorite quotes (which you may have seen on the FB page):
"Courage does not always roar. Sometimes it is the quiet voice at the end of the day saying 'I will try again tomorrow'.- Mary Anne Radmacher
And I guess that's what I'll do.
OH, AND THE 2010 HOLIDAY CARD GETS POSTED HERE TOMORROW!!! HOORAY!!!!
It's got me thinking (more) about all of the bureaucratic nonsense that parents of children of special needs end up dealing with. Yeah, I know that many people without kids with SN have insurance wars, and many people deal with other bureaucracies . . .but it can become (literally) a full time job for parents of children with special needs. And, referring back to the learned helplessness model that I'm such a fan of, it's hard to keep trying to fight the shocks. Last night when Dave got home I took a long, hot shower and had cookies and wine for dinner, because I was ready to just give up. (Thanks to the KIPP cookie exchangers for providing my dinner ;) )
If you are lucky enough to not understand what it means when someone says that they're "fighting with the insurance company", or if you don't understand why it would be stressful to just make a few phone calls, I hope that the saga below will help to shed some light:
Background:
Maya gets a lot of therapy, most of which is through the state's Early Intervention program. However, we also supplement with private speech & feeding therapy, which we pay for out of pocket. Insurance reimburses us for about 1/3 of what we shell out (don't get me started on the additional expenses of having a child with special needs). Once we have a statement (EOB) from the insurance explaining what they will or won't pay, we can take money out of our FSA (a special account that we pay into at the start of each year, tax free, and can use only for medical expenses). Without those EOBs, our money is stuck in the account. If we don't submit EOBs to use it, we lose it.
The Saga:
I submitted a bunch (60ish) claims back at the end of Sept. Some were processed, some just seemed to disappear (meaning that I never heard anything about them, whether they were approved or denied). I've now spoken to different representatives about these claims a bunch of times---each time "something" is wrong with them, preventing them from being processed at all.
Call #1 : The first time I called, they "didn't have the provider's name and address"---but when I spoke to a representative and explained that all of that information was on the receipts that I sent in she was then (miraculously) able to see it. She then submitted them for re-processing.
My thoughts: Hooray! That was easy to fix. Now I'll just wait a few weeks for checks to come in the mail.
Call #2: The second time that I called they said that the person who resubmitted them the first time did it incorrectly, so we had to re-do everything from the first call.
My thoughts: Argh! It's annoying that I waited all this time thinkng that it was being processed! Oh well, at least now it seems like everything is fixed, and I just need to wait a few weeks for checks to arrive.
Call #3: The third time they said that the problem wasn't the missing address information, it was that they felt like the therapist wasn't qualified to provide feeding therapy (because her letterhead says "speech pathologist"). I pointed them towards 2 other claims that I had submitted and they had paid. She agreed that it didn't make sense, and put them all through for re-submission, again. She said that she would mail me EOBs that said the claims were denied, so that I could submit them to the FSA. This phone call took 47 minutes, as we had to individually identify each date of service and claim (it's a good thing I've learned to keep good records).
My thoughts: What the hell-o goes on at these places? How is it even possble that there are so many issues with these claims? I'm starting to suspect that things are done incorrectly intentionally so that eventually I will give up. Or be committed to a mental institution. It's a good thing this girl was so helpful, she'll at least get those EOBs out to us tomorrow so that we don't lose our FSA money. If I don't get them in the mail in the next few days I'm going to call and check.
Call #4: The fourth time I called, the person said that we couldn't get EOBs in the mail because our account was now paperless (I'm 100% sure that this is another stalling tactic. We never changed our account to paperless. I have statements that were mailed to me in Oct, but in Nov they started posting notices to our "online insurance account"--which I had never even heard of prior to this call. WHAT THE HELL? ). She also said that they would never agree to mail 36 EOBs without something in writing. When I offered to fax in something she said that wouldn't work. Then I had a crying, cursing mental breakdown on the phone and got the supervisor :) I faxed over 50 pages (that I had previously mailed in) to the supervisor. She said that she would try to figure out some way to help.
My thoughts: IswearonallthatiisholythatifiknewwherethisofficewasiwouldbetherecampingoutwithmywhinytoddlerandchangingherdiapersonsomeonesdeskandsingingwheelsonthebusandrowrowrowyourboatallthelivelongdayIfyoupeoplemakemelosemyFSAmoneyIwillcallyou3tmesadayeverydayfortherestofeternity.
Call #5/6/7: The 5th-6th-7th times I called, the supervisor dodged my calls.
My thoughts: Shocker. I think they may be starting to realize that I've crossed the line from "Overwhelmed victim of this company" to "Angry and annoying client who won't. ever. stop."
Call #8: The 8th time that I called, the supervisor saw that all of the claims are in the limbo of resubmission (for the umpteenth time). She emailed the manager to see if there was a way to print EOBs for the ones that have been denied and send them to me. I still don't think that this will help with th 36 claims that are in limbo.
My thoughts: I'm coming to the realization that the "supervisor" does not seem to be much more capable of getting things done then the call answering folks. But at least now I have a name, and I get to the same person each time.
Call #9 (today): Supervisor dodged my call
Call #10 (today): Supervisor said that her manager emailed her back, but it was a secure, encrypted emal so she couldn't open it. So she emailed the manager back and asked her to re-email it but not in a secure encrypted way so that she would be able to open it.
My thoughts: Ok, now you're just making shite up. There's not even a remote possibility that any of that is legit.
So, there you have it. In my humble opinion, the insurance company is deliberately giving me the run around, trying to wait me out.
It's maddening.
Literally.
And every time that I get out my notes and stack of papers to call, I think of one of my old favorite quotes (which you may have seen on the FB page):
"Courage does not always roar. Sometimes it is the quiet voice at the end of the day saying 'I will try again tomorrow'.- Mary Anne Radmacher
And I guess that's what I'll do.
OH, AND THE 2010 HOLIDAY CARD GETS POSTED HERE TOMORROW!!! HOORAY!!!!
Sunday, November 28, 2010
Under Pressure*
Why are we having evaluations this week? What the heck is CPSE? Here's my understanding of the situation, in a nutshell:
In the state of NY, therapies for children are provided through EI (Early Intervention) from birth until their third birthday. We’re starting to prepare for Maya’s transition out of EI and into CPSE(Committee on Preschool Special Education) which is run by the DOE (Department of Education, aka Board of Ed.). In general, the DOE is known for being extremely stingy with services, and very difficult to work with (placing children in “special needs” schools that are across the city from where they live, drastically cutting therapies, not providing one-on-one aides without a huge fight, etc.).
By the way, this all ties in really well to the learned helplessness model again---it's us parents vs. the DOE, very David vs. Goliath-esque-----and they know all of the rules and hold all of the power, while we're scrounging around trying to gather as much infomation as possible to fight back with.
So this week we have a group of evaluators coming to, well, evaluate Maya. This morning we had the PT evaluation---later this week we’ll have OT, Speech/Feeding, and Psychological evaluations. Each evaluator will ask me some questions, watch Maya, interact with her, and administer some type of standardized assessment. The scores of each assessment will say how delayed she is in each area of development, and those scores will be used at the big meeting with the DOE in which we try to find an appropriate preschool setting (and whether she’ll be at a therapeutic—aka “special needs”—preschool, or whether she would be in a mainstream preschool and get therapies at home).
Also, I’m calling preschools, setting up tours, trying to find schools in the area. Trying to figure out what would be best for Maya, when really I have no idea. How can anyone know this stuff? I’ve gotten the name of a place to call this week that is supposed to help parents navigate all of this a little bit easier . . . I’ll be interested to see if I can find some guidance.
This stuff is all so stressful. I feel like a few months from now, my hair will fall out again.
I'm not joking.
I have felt my base stress/anxiety level increase, and I can’t really figure out how to best combat that. If you saw my last post, you saw what our schedule looks like . . . granted, this week is busier than usual, but even on a “normal” week, all of those therapies are there. We’re busy. There’s not a lot of time for relaxation or unwinding. There's a lot of worrying. A lot of "what if there's something I'm missing" and "what if there's some school that is only doing tours right now but I don't find out about it for a few months".
(sigh)
December is my favorite month, and I don't want it to get lost in this. I've been addressing our holiday cards :) I'm going to start decorating this week, and wrap presents. We made reservations to go out to dinner for my birthday. I'm going to make shopping lists. I'm trying to figure out how to Maya & Parker proof our future Christmas tree, since they are getting more and more mischievous. Like this:
That's Parker in the bottom corner, saying good morning to Maya. And that's Maya, who somehow was trying to undress herself in the crib, apparently.
I'm going to try not to let this giant dark evaluation/CPSE/DOE/preschool placement cloud overwhelm my favortie month. But I hate the fact that it feels like it will take effort.
In the state of NY, therapies for children are provided through EI (Early Intervention) from birth until their third birthday. We’re starting to prepare for Maya’s transition out of EI and into CPSE(Committee on Preschool Special Education) which is run by the DOE (Department of Education, aka Board of Ed.). In general, the DOE is known for being extremely stingy with services, and very difficult to work with (placing children in “special needs” schools that are across the city from where they live, drastically cutting therapies, not providing one-on-one aides without a huge fight, etc.).
By the way, this all ties in really well to the learned helplessness model again---it's us parents vs. the DOE, very David vs. Goliath-esque-----and they know all of the rules and hold all of the power, while we're scrounging around trying to gather as much infomation as possible to fight back with.
So this week we have a group of evaluators coming to, well, evaluate Maya. This morning we had the PT evaluation---later this week we’ll have OT, Speech/Feeding, and Psychological evaluations. Each evaluator will ask me some questions, watch Maya, interact with her, and administer some type of standardized assessment. The scores of each assessment will say how delayed she is in each area of development, and those scores will be used at the big meeting with the DOE in which we try to find an appropriate preschool setting (and whether she’ll be at a therapeutic—aka “special needs”—preschool, or whether she would be in a mainstream preschool and get therapies at home).
Also, I’m calling preschools, setting up tours, trying to find schools in the area. Trying to figure out what would be best for Maya, when really I have no idea. How can anyone know this stuff? I’ve gotten the name of a place to call this week that is supposed to help parents navigate all of this a little bit easier . . . I’ll be interested to see if I can find some guidance.
This stuff is all so stressful. I feel like a few months from now, my hair will fall out again.
I'm not joking.
I have felt my base stress/anxiety level increase, and I can’t really figure out how to best combat that. If you saw my last post, you saw what our schedule looks like . . . granted, this week is busier than usual, but even on a “normal” week, all of those therapies are there. We’re busy. There’s not a lot of time for relaxation or unwinding. There's a lot of worrying. A lot of "what if there's something I'm missing" and "what if there's some school that is only doing tours right now but I don't find out about it for a few months".
(sigh)
December is my favorite month, and I don't want it to get lost in this. I've been addressing our holiday cards :) I'm going to start decorating this week, and wrap presents. We made reservations to go out to dinner for my birthday. I'm going to make shopping lists. I'm trying to figure out how to Maya & Parker proof our future Christmas tree, since they are getting more and more mischievous. Like this:
I'm going to try not to let this giant dark evaluation/CPSE/DOE/preschool placement cloud overwhelm my favortie month. But I hate the fact that it feels like it will take effort.
Wednesday, September 22, 2010
Learned Helplessness & Early Intervention
Warning: The first three paragraphs here are kind of science nerd-y, but I tried to keep it short, sweet, & simple, and I think what I'm getting at here is really interesting from a psychology standpoint.
The Theory:
As you may or may not know, I was a zoology major in college. I took a good number of ethology (animal behavior), behavioral neuroscience, & neuropsych classes . . . classes that looked at animal behavior and animal psychology (which, as it turns out, is very very closely related to human behavior and human psychology).
There is a very interesting model of animal (and human) behavior called "Learned Helplessness". Basically, experimenters exposed dogs to a series of shocks. "Group A" dogs could turn off the shocks by stepping on a bar, "Group B" dogs couldn't control the shocks. Later on, the dogs were put in a new situation where they could all control the shocks by jumping over a little bar and getting away from them. "Group A" dogs jumped away, but the "Group B" dogs just laid down and whimpered, taking the shocks.
Since the dogs in Group B had learned that their behavior didn't help their situation, they just gave up. They didn't assert themselves. They were depressed. (Human tests have found similar results.)
I've come to the realization this week that many bureaucratic systems (Early Intervention, filing claims with insurance companies, etc.) can set up the same sort of learned helplessness situation----by making people feel helpless, like they have no control over the outcome of their circumstances and no power to accomplish anything, many eventually become depressed and just give up.
The Personal Connection:
This past week, I was irate at dealing with the bureaucracy of the Early Intervention system. I was take-my-plates-out-on-the-terrace-and-shatter-them-one-by-one-while-primal-screaming angry. And, honestly, I'm still pretty ticked. Here's the backstory:
I've been trying to get Maya leg splints for 10 weeks. TEN weeks. The girl can't stand. She can't walk. She needs splints. Initially, I was worried to call too often to follow up on the paperwork because I didn't want to annoy anyone who would have the power to "lose" my file, causing a big delay.
Causing a big delay?---Ha! Here we are nearly 3 months later, and I'm not afraid of getting on anyone's nerves anymore. Now I'm trying to get on people's nerves like it's my freaking job. I would be in the office, singing "99 Bottles of Beer on the Wall" if I thought it would help.
If you've been lucky enough to never deal with infuriating bureaucracy, here's my list of phone calls from Monday:
10:15: Called Service Coordinator work line, left message
2:00: Called SC's cell phone (which she prefers to be reached on), left message
2:30: Called SC's supervisor, left message
4:15: Called SC's work line again, left another message
4:48: Called SC's supervisor again, he answers and says "Oh, SC is here, I think she has information for you" and transfers me.
She's like "Oh, I've been meaning to call you back". And then the big update is that she finally spoke to the person who has to sign off on our stuff and she said "Hopefully we'll get it by Friday, if not I'll call on Thursday to check on things." Thursday. Thursday? If she calls Thursday, the signer person won't even get the message until Friday afternoon. And no way they'll call her back on Friday. So another week will go by with nothing.
AARRRRRRRRRRRRRRRRRGGGGGGGGGGGGGGGGGGGHHHH
I got the number to start calling myself, but in a ridiculous twist that unfolded this afternoon, it turns out that I've been leaving messages for the wrong person . . . I was given the number for the person who signs off on our speech papers, not our assistive technology papers. So tomorrow I'll start calling the new number.
How can this be so hard.
My effingg kid can't walk. I need these splints. Sign the papers.
I totally understand why people lose their minds and shoot up offices.
(I'm not really threatening violence, please don't report me to any authorities :) )
In Conclusion
I'm a totally capable, savvy, intelligent woman---but dealing with this system has made me feel so useless and depressed that there are many days where I have thought "why bother calling. It won't matter anyway."
And if you're thinking "Oh, if it was me, I would just storm in there and demand this and blah blah blah" well, let me say, no you wouldn't. You would quickly see that it won't get you anywhere, and actually, it would close doors in your face.
Plus---think for a moment about these calls I'm making. I'm trying to get splints so that Maya can stand and walk. Everyone who is in Early Intervention has kids with specials needs who are younger than 3. So these people trying to make the calls? We're pretty much near the end of our emotional rope a lot of the time.
We already feel helpless, because we couldn't control whatever circumstances have led to our child's disabilities.
We are already angry and frustrated, feeling like we try to help but things don't work.
We oscillate between "I will fight with everything I have until you give my kid what she deserves" to "I'm just so tired of fighting".
-or-
We oscillate between "I will jump and push levers and fight for my ability to not get shocked" to "Sometimes it's just easier to lay down and whimper and wait for it to pass".
Oddly, making this connection (my emotional roller coaster with this situation, and it's perfect fit with the learned helplessness model) has really let me detach a little bit from the process, thereby giving me the calmness to just keep calling, patiently and matter of factly. For now anyway. I'm sure I'll get frustrated again :)
So that's where I've been. And now , here are some totally random pictures from the weekend, just for fun:
The Theory:
As you may or may not know, I was a zoology major in college. I took a good number of ethology (animal behavior), behavioral neuroscience, & neuropsych classes . . . classes that looked at animal behavior and animal psychology (which, as it turns out, is very very closely related to human behavior and human psychology).
There is a very interesting model of animal (and human) behavior called "Learned Helplessness". Basically, experimenters exposed dogs to a series of shocks. "Group A" dogs could turn off the shocks by stepping on a bar, "Group B" dogs couldn't control the shocks. Later on, the dogs were put in a new situation where they could all control the shocks by jumping over a little bar and getting away from them. "Group A" dogs jumped away, but the "Group B" dogs just laid down and whimpered, taking the shocks.
Since the dogs in Group B had learned that their behavior didn't help their situation, they just gave up. They didn't assert themselves. They were depressed. (Human tests have found similar results.)
I've come to the realization this week that many bureaucratic systems (Early Intervention, filing claims with insurance companies, etc.) can set up the same sort of learned helplessness situation----by making people feel helpless, like they have no control over the outcome of their circumstances and no power to accomplish anything, many eventually become depressed and just give up.
The Personal Connection:
This past week, I was irate at dealing with the bureaucracy of the Early Intervention system. I was take-my-plates-out-on-the-terrace-and-shatter-them-one-by-one-while-primal-screaming angry. And, honestly, I'm still pretty ticked. Here's the backstory:
I've been trying to get Maya leg splints for 10 weeks. TEN weeks. The girl can't stand. She can't walk. She needs splints. Initially, I was worried to call too often to follow up on the paperwork because I didn't want to annoy anyone who would have the power to "lose" my file, causing a big delay.
Causing a big delay?---Ha! Here we are nearly 3 months later, and I'm not afraid of getting on anyone's nerves anymore. Now I'm trying to get on people's nerves like it's my freaking job. I would be in the office, singing "99 Bottles of Beer on the Wall" if I thought it would help.
If you've been lucky enough to never deal with infuriating bureaucracy, here's my list of phone calls from Monday:
10:15: Called Service Coordinator work line, left message
2:00: Called SC's cell phone (which she prefers to be reached on), left message
2:30: Called SC's supervisor, left message
4:15: Called SC's work line again, left another message
4:48: Called SC's supervisor again, he answers and says "Oh, SC is here, I think she has information for you" and transfers me.
She's like "Oh, I've been meaning to call you back". And then the big update is that she finally spoke to the person who has to sign off on our stuff and she said "Hopefully we'll get it by Friday, if not I'll call on Thursday to check on things." Thursday. Thursday? If she calls Thursday, the signer person won't even get the message until Friday afternoon. And no way they'll call her back on Friday. So another week will go by with nothing.
AARRRRRRRRRRRRRRRRRGGGGGGGGGGGGGGGGGGGHHHH
I got the number to start calling myself, but in a ridiculous twist that unfolded this afternoon, it turns out that I've been leaving messages for the wrong person . . . I was given the number for the person who signs off on our speech papers, not our assistive technology papers. So tomorrow I'll start calling the new number.
How can this be so hard.
My effingg kid can't walk. I need these splints. Sign the papers.
I totally understand why people lose their minds and shoot up offices.
(I'm not really threatening violence, please don't report me to any authorities :) )
In Conclusion
I'm a totally capable, savvy, intelligent woman---but dealing with this system has made me feel so useless and depressed that there are many days where I have thought "why bother calling. It won't matter anyway."
And if you're thinking "Oh, if it was me, I would just storm in there and demand this and blah blah blah" well, let me say, no you wouldn't. You would quickly see that it won't get you anywhere, and actually, it would close doors in your face.
Plus---think for a moment about these calls I'm making. I'm trying to get splints so that Maya can stand and walk. Everyone who is in Early Intervention has kids with specials needs who are younger than 3. So these people trying to make the calls? We're pretty much near the end of our emotional rope a lot of the time.
We already feel helpless, because we couldn't control whatever circumstances have led to our child's disabilities.
We are already angry and frustrated, feeling like we try to help but things don't work.
We oscillate between "I will fight with everything I have until you give my kid what she deserves" to "I'm just so tired of fighting".
-or-
We oscillate between "I will jump and push levers and fight for my ability to not get shocked" to "Sometimes it's just easier to lay down and whimper and wait for it to pass".
Oddly, making this connection (my emotional roller coaster with this situation, and it's perfect fit with the learned helplessness model) has really let me detach a little bit from the process, thereby giving me the calmness to just keep calling, patiently and matter of factly. For now anyway. I'm sure I'll get frustrated again :)
So that's where I've been. And now , here are some totally random pictures from the weekend, just for fun:
Waiting for Daddy in the lobby of the building (he took this pic)
Shopping is so exhausting. Sometimes I just need a break.
In light of these recent stressors, I've needed to up my caffeine intake.
Monday, September 13, 2010
Oh brother, times 10
In choosing to blog about life with a child with special needs, I think it would be irresponsible not to include some of the bad days . . . otherwise, readers who are in similar situations may feel like I'm idealizing life, or minimizing and skipping over the obnoxious, challenging parts. Today was one of the lousier days. If you're thinking "Lousy days be damned---make me smile!", then just skip ahead to the end :)
Today a lot of annoying things added up and became totally overwhelming. Here were a few:
1. We have a huge stack of bills and insurance stuff to deal with. I have to call them, but I've been putting it off because although I hear of people "fighting with their insurance" to get things paid for, I have no idea what that actually means. I feel like I'm going to call and talk to some pencil pusher who says "we don't pay for that" and I'm going to say "you need to, the geneticist said she needed this test" and then he'll say "well, we don't" and then what do I do? (I'm going to start making calls tomorrow, though. I know I'll feel better once I address it.)
2. Parker's therapy dog class last night sucked, and I have a ton of work to do with him.
3. I can't get anywhere with the agencies that are supposed to sign off so that Maya can get splints for her legs. The process has been going on for literally months. I spent time basically bitching at several different people over the past 2 weeks, but all of them are powerless . . . the people who actually have the power to move it along either: are never in the office, don't answer their phones, or have permanently full voicemail boxes. I am waiting on a new phone number that I can start calling to bother people, and soon I'm going to request an address and just camp out there. With Maya. And Parker. And we're going to sing "Wheels on the bus". Over and over. And then I'll change the lyrics to "The people in the office need to sign that form, sign that form, sign that form . . . the people in the office need to sign that form or we'll never, ever leave."
4. I worry that our lack of ability to get spints, and to get our speech agency changed, might indicate that this agency will mess up our transition to the preschool system, which starts in the winter/spring.
5. As I try to do all of this, I still am surrounded by way too much stuff at home. Why is there a pile of change, a tube of sunblock, and business cards on the counter? Why can't we stay on top of putting things away, instead of emptying our pockets or stroller contents or whatever when we walk in the door? (This is why the purging & reorganization project will continue, even if it's only at a snail's pace, until everything has a home that is easily accessible.)
I've just had it today.
And I tried sitting on the floor and crying, but it didn't help. And Maya didn't understand what I was doing, and sat next to me with a furrowed brow. Then I sniffled "Mommy's sad, Maya. Can you give me a hug?" And she climbed right into my lap and did just that. Then she squeezed a handful of my face and I had to kick her off.
So, there's that. It's not all sunshine and roses here . . . but we do have some good times :) New pictures are up in the Facebook album "What clean(ing) looks like", so you can see progress in the media center bookshelves. And here's a video of our dynamic duo . . . playing together in the hallway.
Highlight: You may not have ever heard Maya talk before, because she gets pretty quiet when other folks are around. But here, you can hear her version of "Pa-pa"----her nickname for Parker. It's the only thing she'll reliably say almost every time we ask her to. The silly part is that she says "Ma ma!" instead of "Pa-pa". You'll hear it at 1:03.
Remember, if you just see a blank spot with a "play" arrow underneath, click the arrow and the video will start!
Today a lot of annoying things added up and became totally overwhelming. Here were a few:
1. We have a huge stack of bills and insurance stuff to deal with. I have to call them, but I've been putting it off because although I hear of people "fighting with their insurance" to get things paid for, I have no idea what that actually means. I feel like I'm going to call and talk to some pencil pusher who says "we don't pay for that" and I'm going to say "you need to, the geneticist said she needed this test" and then he'll say "well, we don't" and then what do I do? (I'm going to start making calls tomorrow, though. I know I'll feel better once I address it.)
2. Parker's therapy dog class last night sucked, and I have a ton of work to do with him.
3. I can't get anywhere with the agencies that are supposed to sign off so that Maya can get splints for her legs. The process has been going on for literally months. I spent time basically bitching at several different people over the past 2 weeks, but all of them are powerless . . . the people who actually have the power to move it along either: are never in the office, don't answer their phones, or have permanently full voicemail boxes. I am waiting on a new phone number that I can start calling to bother people, and soon I'm going to request an address and just camp out there. With Maya. And Parker. And we're going to sing "Wheels on the bus". Over and over. And then I'll change the lyrics to "The people in the office need to sign that form, sign that form, sign that form . . . the people in the office need to sign that form or we'll never, ever leave."
4. I worry that our lack of ability to get spints, and to get our speech agency changed, might indicate that this agency will mess up our transition to the preschool system, which starts in the winter/spring.
5. As I try to do all of this, I still am surrounded by way too much stuff at home. Why is there a pile of change, a tube of sunblock, and business cards on the counter? Why can't we stay on top of putting things away, instead of emptying our pockets or stroller contents or whatever when we walk in the door? (This is why the purging & reorganization project will continue, even if it's only at a snail's pace, until everything has a home that is easily accessible.)
I've just had it today.
And I tried sitting on the floor and crying, but it didn't help. And Maya didn't understand what I was doing, and sat next to me with a furrowed brow. Then I sniffled "Mommy's sad, Maya. Can you give me a hug?" And she climbed right into my lap and did just that. Then she squeezed a handful of my face and I had to kick her off.
So, there's that. It's not all sunshine and roses here . . . but we do have some good times :) New pictures are up in the Facebook album "What clean(ing) looks like", so you can see progress in the media center bookshelves. And here's a video of our dynamic duo . . . playing together in the hallway.
Highlight: You may not have ever heard Maya talk before, because she gets pretty quiet when other folks are around. But here, you can hear her version of "Pa-pa"----her nickname for Parker. It's the only thing she'll reliably say almost every time we ask her to. The silly part is that she says "Ma ma!" instead of "Pa-pa". You'll hear it at 1:03.
Remember, if you just see a blank spot with a "play" arrow underneath, click the arrow and the video will start!
Tuesday, August 31, 2010
This isn't what (I thought) I wanted
Tomorrow Dave goes back to work, and a week from tomorrow the students return. There's definitely a part of me that wishes I was going with him . . . I like getting up early, talking with the other staff (I <3 the KIPP family), being in brainstorming sessions and having philosophical this-is-what-we-want-our-school-to-be-like meetings. Planning, photocopies, planning, organizing, planning . . . I like the excitement and busy-ness, the sense of new beginnings, that comes with the start of a new year.
But tomorrow I won't be there. I'll be home, with Maya. One therapy (OT) here in the morning, followed by a drive in Manhattan for therapy #2 (speech & feeding). I have two appointments for Maya (ENT & developmental pediatrician) that need to be scheduled, a prescription to pick up at her pediatrician's office, and I have to schedule Parker's vet evaluation for his therapy certificate (classes start Sept 12!). I have papers to sign and fax to get the agency for Maya's speech & feeding therapy agency changed, again, and will then be a thorn in the coordinator's side until I know that it's done. The car will need to be moved (alternate side, ugh) and the dog walked. Cleaning out the house will continue, and various projects will be done. I'll think about things to blog about (and probably forget them). I'll be hoping that Maya's croup-iness subsides, and that I won't need to take her in to see the pediatrician. Maybe we'll have time to hit the playground before the first therapy, maybe not.
I wasn't the stay at home mom type.
I worked for the first year after Maya was born, and stopped only because of her special needs. It was nearly impossible to coordinate appointments, arguing with doctor's offices and navigating through the Early Intervention process, from school. Once therapies were seriously starting, it was hard for me to keep up with what was going on, and the grading and planning that had to be done at home were overwhelming. I was barely keeping my head above water.
But I really didn't want to leave work.
Like it was yesterday, I can remember sitting in the meeting when I would announce to my team that I wouldn't be returning, and I still couldn't get through it without tearing up. "This isn't what I want to do, but it's what needs to be done, for now", I said. And at that point I kind of thought that I would only need to leave for a year---study the therapists, help Maya catch up on her milestones, and bam, I'd be right back. No problem.
Not quite.
So as the back to school buzz crescendos this week, there's a part of me that is bitterly wistful, that's very "Hey! What about me? I want to be there too! I was a good teacher! Don't forget me!"
And this isn't to say that working out of the home is better than being a stay at home mom, and it's not to say that staying at home is better than working. It's just to paint the picture of how much I loved my work.
If you asked me 3 years ago if I wanted to be a stay-at-home mom, I would have said no.
But, as it turns out, I love staying at home with Maya too. I like playing with her, the playground is fun, it's fun to watch her discover new things (like the decks of cards that she's totally obsessed with now, or her crush on Elmo) and make new sounds (da-da-da and nananana). I love working with her and Parker, and drawing at the table. I love the way she makes me laugh, like today when she decided that she needed some iced coffee, just like dad & mom:
If you asked me 3 years ago if I wanted to be a mom to a child with special needs, I would have said no.
But therapies are just a normal part of our days now, and the therapists have become the friends that I really chat with throughout the day (other than my sister). I love the way they all love Maya, and she makes them laugh, and I like learning from them. The appointments can be downers, but we make the best of them by choosing really amazing doctors and taking pictures, and videos.
Without special needs, I wouldn't know about the amazing parents in the special needs world, the women in the support group that I've met.
Without special needs, I might have missed celebrating all of the little things (like new sounds). I'm apathetic by nature, and I might have just "yep, she makes noise. kids make noise. whoop-de-doo"-d right past it all.
Without special needs, we wouldn't have Parker. And his therapy classes start in September . . . who knows where that volunteer work will lead.
This isn't what I thought I wanted . . . but I'm so happy where I am. A few months ago things were pretty dark, and I wondered about how people come to terms with parenting their children with special needs---how to get past the sadness, the mourning, the wishing-things-were-different.
But I'm past it. For now, anyway. I know it's cyclical, and I know sadness will creep in from time to time (sometimes in a crushing way). But for a while now, it's just been good.
So, KIPP family (and teacher folks in general), I'll miss you all tomorrow, and I'll miss being a part of the energy. But I wouldn't trade places with any of you, either :)
(PS---Happy 1st day of Kindergarten tomorrow to my nephew Collin!)
But tomorrow I won't be there. I'll be home, with Maya. One therapy (OT) here in the morning, followed by a drive in Manhattan for therapy #2 (speech & feeding). I have two appointments for Maya (ENT & developmental pediatrician) that need to be scheduled, a prescription to pick up at her pediatrician's office, and I have to schedule Parker's vet evaluation for his therapy certificate (classes start Sept 12!). I have papers to sign and fax to get the agency for Maya's speech & feeding therapy agency changed, again, and will then be a thorn in the coordinator's side until I know that it's done. The car will need to be moved (alternate side, ugh) and the dog walked. Cleaning out the house will continue, and various projects will be done. I'll think about things to blog about (and probably forget them). I'll be hoping that Maya's croup-iness subsides, and that I won't need to take her in to see the pediatrician. Maybe we'll have time to hit the playground before the first therapy, maybe not.
I wasn't the stay at home mom type.
I worked for the first year after Maya was born, and stopped only because of her special needs. It was nearly impossible to coordinate appointments, arguing with doctor's offices and navigating through the Early Intervention process, from school. Once therapies were seriously starting, it was hard for me to keep up with what was going on, and the grading and planning that had to be done at home were overwhelming. I was barely keeping my head above water.
But I really didn't want to leave work.
Like it was yesterday, I can remember sitting in the meeting when I would announce to my team that I wouldn't be returning, and I still couldn't get through it without tearing up. "This isn't what I want to do, but it's what needs to be done, for now", I said. And at that point I kind of thought that I would only need to leave for a year---study the therapists, help Maya catch up on her milestones, and bam, I'd be right back. No problem.
Not quite.
So as the back to school buzz crescendos this week, there's a part of me that is bitterly wistful, that's very "Hey! What about me? I want to be there too! I was a good teacher! Don't forget me!"
And this isn't to say that working out of the home is better than being a stay at home mom, and it's not to say that staying at home is better than working. It's just to paint the picture of how much I loved my work.
If you asked me 3 years ago if I wanted to be a stay-at-home mom, I would have said no.
But, as it turns out, I love staying at home with Maya too. I like playing with her, the playground is fun, it's fun to watch her discover new things (like the decks of cards that she's totally obsessed with now, or her crush on Elmo) and make new sounds (da-da-da and nananana). I love working with her and Parker, and drawing at the table. I love the way she makes me laugh, like today when she decided that she needed some iced coffee, just like dad & mom:
If you asked me 3 years ago if I wanted to be a mom to a child with special needs, I would have said no.
But therapies are just a normal part of our days now, and the therapists have become the friends that I really chat with throughout the day (other than my sister). I love the way they all love Maya, and she makes them laugh, and I like learning from them. The appointments can be downers, but we make the best of them by choosing really amazing doctors and taking pictures, and videos.
Without special needs, I wouldn't know about the amazing parents in the special needs world, the women in the support group that I've met.
Without special needs, I might have missed celebrating all of the little things (like new sounds). I'm apathetic by nature, and I might have just "yep, she makes noise. kids make noise. whoop-de-doo"-d right past it all.
Without special needs, we wouldn't have Parker. And his therapy classes start in September . . . who knows where that volunteer work will lead.
This isn't what I thought I wanted . . . but I'm so happy where I am. A few months ago things were pretty dark, and I wondered about how people come to terms with parenting their children with special needs---how to get past the sadness, the mourning, the wishing-things-were-different.
But I'm past it. For now, anyway. I know it's cyclical, and I know sadness will creep in from time to time (sometimes in a crushing way). But for a while now, it's just been good.
So, KIPP family (and teacher folks in general), I'll miss you all tomorrow, and I'll miss being a part of the energy. But I wouldn't trade places with any of you, either :)
(PS---Happy 1st day of Kindergarten tomorrow to my nephew Collin!)
Thursday, October 29, 2009
I'm working on an update, but my time gets stolen away really easily. One week of not updating and there's so much to add that it becomes too big of a job, so I procrastinate and it gets bigger, etc etc. I just uploaded a bunch of pictures, so now I need to sort and organize them and then I can update with pics.
I had Maya's IFSP meeting this week (where we look at her progress and determine her thearpies for the next 6 months). We're increasing everything, so now we'll get PT for 120 mins a week (up from 60), OT for 120 mins (up from 90), Speech & Feeding for 120 mins (up from 60), and we'll get evaluated by a special instructor (who I think will work on things like pointing, reading, clapping, etc). I'm sure she'll qualify for that too. I'm working on the new schedule but it's hard to coordinate the schedules of 3 therapists and us, too. And Maya seems to be switching from 2 naps per day to 1, so I'm not sure how that will factor in as well.
For now, I'll leave you with the best picture that I think I've taken this month. This was at the park----Maya was holding a coin for the piggy bank and I asked her to give it to me (which she did). Then I put the coin in the bank, instead of handing it back to her, and this is what happened:
MOMMY! I can NOT BELIEVE that you just fed my coin to the PIGGY instead of giving it back to ME! I am so MAD! MAD! MAD! MAD! I'm just going to sit here and cry :(
Monday, April 6, 2009
Today we had Maya's case review. Although not surprising, it's somewhat demoralizing to go through each evaluation (5 in all) and hear that she's operating at about a 5 month level. Therapies will likely be 2-3 times a week, for a total of 6-8 sessions per week. A lot of appointments. I'm not feeling chipper, that's all I've got today.
Here are 2 parting videos, in case you're not a friend of mine on Facebook (I posted them to Facebook last week). These are great :)
Here are 2 parting videos, in case you're not a friend of mine on Facebook (I posted them to Facebook last week). These are great :)
Wednesday, March 25, 2009
All done!
Our doctor appointments are DONE. Well, for now. Until next Thursday night. Oh, and then April 6th. And 2 on the 20th. And one on the 30th. Oh well. It was a nice celebratory moment while it lasted :)
Today we had physical therapy & occupational therapy evaluations. I thought they were intersting (mostly playing on the floor with different toys, trying different positions). Poor Maya was wiped out by the end . . . it was like baby aerobics).
(Did you know that if you Google "baby aerobics" this terrifying picture comes up?!?!)
The therapists both said that she'll qualify for services based on her delays, but they were impressed with her positive attitude and willingness to keep trying new things. We learned a few new exercise tricks, too :)
New appointments on the horizon:
Thurs, April 2: Normal 10 month pediatrician appointment
Mon, April 6: Meeting with developmental pediatrician to review the results of the 5 evaluations
Today we had physical therapy & occupational therapy evaluations. I thought they were intersting (mostly playing on the floor with different toys, trying different positions). Poor Maya was wiped out by the end . . . it was like baby aerobics).
(Did you know that if you Google "baby aerobics" this terrifying picture comes up?!?!)
The therapists both said that she'll qualify for services based on her delays, but they were impressed with her positive attitude and willingness to keep trying new things. We learned a few new exercise tricks, too :)
New appointments on the horizon:
Thurs, April 2: Normal 10 month pediatrician appointment
Mon, April 6: Meeting with developmental pediatrician to review the results of the 5 evaluations
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