Square One
March 25, 2009
Our insurance company finally reviewed our claim for Noah's proposed speech therapy plan.
Denied.
Thanks.
Assholes.
I...I just don't even have the energy to get worked up about it. We'll appeal the decision, of course, but Lord. We waited close to two months for the initial evaluation. We waited another two months for the insurance company's decision. And now. Pfft.
There's a "private" rate for the therapy, of course, but I know it's more expensive than another speech/OT program in the area, a program that I think is more comprehensive, a program that I didn't contact initially because...they don't accept our insurance. Our insurance which, on paper, offers fantastic coverage for speech therapy, so it seemed like a logical trade-off. But if we're going to be paying out of pocket ANYWAY...I should...we should...should we? And then there's another, even better program in the city, which we could afford if we downsize to a condo and reduce our mortgage and again, if we're going to be paying out of pocket ANYWAY, if Noah ends up needing private schools ANYWAY...should we? What if Ezra needs early intervention? What if Ezra doesn't?
The school district evaluation has become our own personal red wheel barrow glazed with rain water.
They graciously offered a private screening, since they typically start with big group clinics where kids play together and there's chaos and lots of transitions and redirection, with one skill set being observed and evaluated right after another. In other words: a total freaking nightmare for a sensory-senstive child, and likely to set off a number of Noah's triggers. They said they'd be happy to adjust their tactics and conduct the evaluations one at a time, in our home. I said no, thank you, I'm sure Noah will be just fine.
I know he won't be fine. I'm practically counting on us being dismissed from the clinic setting early with appointments for private screenings at home. I need them to See It. I need them to see him Fail.
***
We took Noah to Barnes & Noble the other night to pick out some new storybooks and play with the train table. I sat and watched him and paged through a towering stack of parenting books. Books about Raising Your Quirky Sensory-Sensitive Spirited Unpredictable Out-of-Sync Different Child, books that promised Practical Simple Solutions To Everyday Challenges, books that promised to Fix It.
Of course they don't. They look substantial but spend chapter after chapter rehashing the same information, the same in-depth scientific descriptions about Vestibular Systems gone awry. You find some comfort in the anecdotes -- kids who sound so creepily like your kid, parents who also admit to snapping and scolding and just being so tired -- but then the actual strategies are all the same ones you've read about before and tried already. Social stories, check. Take breaks, trust your instincts, shaving cream and bread dough and electric toothbrushes and above all, the right kind of therapy. Which: dooood. I am trying. Two paragraphs about choosing the right preschool (Trust Those Instincts! Talk To The Teacher!) are followed by sections about elementary school and junior high and high school and oh, God. It just doesn't end.
Noah came over to show me something. "A gween train, Mommy," he announced. Two feet away another little boy rolled his eyes and muttered a correction. "Not gween. Green." Noah didn't seem to hear him. He honestly didn't even seem to register that another child was there.
I ended up putting all the books back on the shelf. As I tried to remember where I'd gotten each one, I stared at the rows and rows of parenting books. Books about diet and discipline and how to get your kid to do this and that and coping with this and that. Bullies, anxiety, allergies, learning disabilities, illness, grief. It's tough for everybody, the books seemed to say. It's a terrible business, this raising human beings thing.
***
We got home and put the boys to bed and I stood outside Noah's door for a bit, listening to him talk.
"Not gween. Geen. Not geen. Guh-een. Guh-reen. Guhreen! Good talking, Noah. Not gween. Guhreen."
I never thought I'd say I want to see a child fail, but I hope Noah fails.
No words of wisdom. Just hoping all turns out well in the end. It will, it just won't feel like that at times.
Wow. I do that in bed, too. Rehash the day and what I should have said differently. That just broke my heart about Noah, though.
Oh that Noah deserves some breaks. and you do too. Sending you just some good thoughts. Even when there are no "issues" this is a tough business; when something rocks the boat a bit - oh jeez.
Your last paragraph just makes me hurt for him -and you.
The paragraph where you said you wanted to see Noah fail? Struck me.
Oh honey, it's not that bad. The more I read your blog, the more I see you are a drama queen, and I think Noah is just mirroring your behavior. Everything involves big drama; taking a cross-country flight, a trip to the park, whether it's a nature/nurture thing, Noah sees this and mimics your hysteria. But you are fine! And Noah will grow up fine, too. I think a lot of this relates to the hellishly competitive part of the country you're living in too. In more laid back places, Noah's antics wouldn't even be noticed, because you know, he's THREE. Cut him and yourself some slack.
That bit at the end really got me...
I haven't experienced the hardships you've gone through (and are going through), but I've got kids. And there's always something when you've got kids. Big or small, there's always something. I wish you well.
I don't know you and I just started reading your blog and I didn't click to read the back story and I think maybe the only thing we have in common in the world is that we both have kids. But your post made me cry. Your son sounds like an amazing little boy. And you seem pretty fantastic yourself.
that broke my heart.
that broke my heart a bit. he's so very aware of many things, isn't he? am sending you good thoughts.
DUDE. That last paragraph made me cry. Good talking, Noah.
The last part, where Noah was talking to himself, brought me to tears.
You're doing a good job!
My 3 year old still says "lellow" :).
That very last paragraph made me teary. They don't miss a fucking thing, do they?
{hugs} take care of yourself a bit girl. You can only worry so much.
First off, Wow, Lily - You don't know anything. It's not for you to judge Noah's behavior. Don't you imagine his mother would know much better than you? And as far as being a drama queen - hardly - Amy is a person who cares about her son and wants to figure out how to give him the best start in life. You need to back off.
Wow, I've never gone off on someone in a public forum before. Anyway.
I commented to say, That last sentence of Noah's self talk just broke my heart. Good talking, Noah.
I came to say that last bit had me in tears. I hope that your insurance pulls its head out- dealing with them along with the everyday is just way too much hoop jumping!
Also, I'd like to punch Lily in the face.
Oh my Noah alone in his room? That made me cry. Because he DOES register it all! Is that better? Or worse?
That last bit made me cry. I feel for you. My Braeden is a little older than Noah and has many of the same issues so I am right there with you. And.... yesterday my pediatrician sent through a referral for my youngest (2 years old) to be seen by EI for an evaluation of his speech.
Not again.
Big hugs from me to you. I really hope this evaluation goes the right way for Noah.
My heart just broke right open for your sweet little boy.
And yeah, the parenting books have it right, it is hard as hell.
And yeah, the parenting books have it wrong because the hard-as-hell-ness is what makes it so damn rewarding.
That last paragraph just broke my heart.
I've been reading your blog for a while, and Noah seems like such a wonderful little kid. You guys are doing your best, and that is what matters. You are trying all the things those books suggest, which means you are on the right track, and looking for better options, which means Noah and Ez are two lucky boys. I don't have kids, and I can only imagine how tough this is for you. I can't give you advice, but I think you're doing a great job. Just hang in there. Really think through what makes sense. Noah's a smart little guy, and together, you guys will make it work.
Delurking to say my heart just broken open and spilled all over my desk.
Sweet Noah!
Best wishes for success. At least you know that kid has a heart bigger than any SPD.
I'm a long time reader, but I've hardly ever commented. But this post? This post made me cry. Dude. I hope you can come to a decision that you feel comfortable with. Because no matter what, you will probably always second guess yourself.
It is true - every child has some challenge or other. But it doesn't make it any easier to see your baby struggle.
Sweet Noah. Listening to him outside the door - so sweet!
Okay - I just commented, but that is so poignant and sweet! I mean, it just makes me want to swoop up that kid and give him a thousand hugs and kisses.
That last bit was like a punch to the gut. My heart hurts for you and your precious little boy who tries so so hard.
I'm so sorry about your asshole-ish insurance! You and your husband are wonderful parents- truly- and I have *no* doubt that you will figure out what's right for Noah. He's lucky to have you as his advocate.
First off, Lily, you're a pompous idiot. The worst kind of idiot.
Amy, my heart goes out to Noah and you. Big hugs for both of you.
That last line. I'm trying so hard not try cry at work. Poor Noah. Poor both of you.
Hugs to both of you. I hope things turn out the way they need to. Whatever way that is.
and Lily, seriously? WTH?
de-lurking to say your last paragraph broke my heart, and I'm sitting here at the office in tears for your sweet brave little boy. I hope that Noah fails, and fails big, and gets the help he needs.
That last part had me in tears. And it makes me wonder...could Noah be feeling the pressure to talk like, act like a "normal" kid, and could that be playing into his anxiety?
Kids have a rough time anyway, especially at this age. My second was speech delayed, and I remember asking my husband if we should do anything about it. He stared at me and said, "He's three. He has plenty of time to enunciate. I don't want to freak him out."
Which: I know, assvice. I know you and Jason are doing your best to not freak Noah out, consciously. Maybe the preschool environment is freaking him out as well. I know you want him to have social experiences. I just...gah. Thinking of a little kid, trying to coach himself to say a word properly, repeating encouraging phrases he's heard over and over...breaks my damn heart. It shows he was aware of that little boy correcting him, he just...is tired of being corrected, probably.
I will just say this: my previously speech delayed three year old is now a nearly 4 1/2 year old, potty trained, and can hold his own in a conversation. No preschool, no EI. He's a quirky kid, yes. Loves to wash his hands a bit too much. Hates to get sticky, is very dismayed when a pile of balloons doesn't stay in one place, or his stuffed animals get moved without his permission. But he is HIM, and he will go far in life, I just know it.
So will Noah.
That is heartbreaking. You're right, this parenting stuff is hard, but not in the way the books say. It breaks your heart and you can't take away the hurt.
Like everybody else, I am sitting her crying over the green thing. I never thought it was a big deal, but for kids who are speech delayed, it's a HUGE deal. I can't tell you how many times my kid has told me that no one likes her because she doesn't talk normal. (It's getting better, both her speech and the friend thing.) Anyway, I hope you all the best (or worst, whatever's most effective) at the evaluation.
And Lily - How many poor kids aren't helped because someone thinks it's just "antics?" How many kids grow up with bigger problems than necessary because they didn't have a mom like Amy who would go through hell to make sure everything's okay? Do you even have kids? I doubt it, because if you did, you would understand what it's like to think something's wrong and feel helpless about it.
Long-time lurker, first time commenter. We went through the whole insurance rigamarole with one of my twins' helmet/ plagiocephaly/ torticollis. They denied the helmet because his head was 1 MILLIMETER not deformed enough. The measurements were done on a wiggly 7 month old.
We went full steam ahead paying for everything ourselves because it's just what you do. In the meantime, I appealed those bitches all the way to the very freaking top. It ended in a committee hearing with me yelling into the phone - PREMATURE TWIN A, SEVERE TORTICOLLIS, DEVELOPMENTAL DELAYS, NINE MONTHS OF PHYSICAL THERAPY AND YOU DENY ME FOR ONE MILLIMETER?
They denied me again. Then the hospital freaking wrote off the cost of the helmet because we should have gotten pre-approval for the treatment! EFF YOU system!
So: APPEAL. Appeal the decision and take it to the top. Don't take the first no.
And: my heart is breaking for you and Noah too. The system sucks.
Another longtime reader and lurker coming out. OMFG that last line totally broke my heart and I'm crying at my desk. Good Talking, Noah.
Amy, delurking (after 3 years) to say "ouch" and, I'm right there with you. My own son is quirky in his own way too, causing and having caused me many hours of worry and panic. This: "It's a terrible business, this raising human beings thing." struck a chord with me. It does seem to be what the books say, and sometimes we sink into believing that we're not qualified for the job. But it's our absolute love of our children that makes our worry so overwhelming at times. God bless Noah's little heart, working out how to say green. I will tell you this, I wish now, looking back at when my son was Noah's age and I was going through the same angst, that someone had convinced me to worry less and enjoy him more. If you feel there are teachers or others who are being less than helpful to you and Noah, change the situation as fast as you can, whatever that means. YOU are doing a wonderful job raising and nurturing him. Don't ever doubt it.
oh my God...no, no, no. that last bit where noah talked to himself, remembering and recalling what that other child said, that just slayed me. i burst out crying. he's a smart, bright, perceptive, sensitive child, one that i'm proud and happy to read about. mean people suck (re: that other little boy).
You are a really good mom. I wish I had something special to add here, but the one thought that ran through my head was that maybe going back to work wouldn't be as bad if you knew it would allow you to afford the therapy Noah benefits from? Just a thought, not trying to push you in any direction. Good luck.
Choking up over here. The end part. Wow. Yes, good talking, Noah.
Oh... my heart just broke a little with that last bit.
What a sweet, precious boy. And what a good momma he has.
Yeah, um, Lily...you can kiss my oblivious, stupid, UNWANTED, why the hell are you even here reading and commenting, ASS...vice.
Amy....follow your gut. It's the best we Mommies can ever do. You have an amazing little man there, who has one of the best Mommies out there...and you know why you're one of the best? Because you love him with all of your heart...and then some. It doesn't make you perfect, but one amazing Mommy!! Keep on fighting...sending lots of prayers your way for the RIGHT outcome for his treatment.....***hugs***
Something we learned through years of OT and evaluations with our son, and private health insurance to boot: you can always, always negotiate a price/payment plan with providers. The insurance companies do it, so can you. Just ask for the "preferred negotiated rate" when you talk to the billing department. Ask them if they'll give it to you. Tell them your insurance has denied benefits. We have never, ever been turned down by billing departments. Once you get them to accept the preferred negotiated rate, ask them to put you on a payment plan. It will save your budget, believe me!
I think something else that was helpful to us was when our son was discharged from OT (the first time) and we were so happy to be "done," the therapist looked at us and basically told us to always consider him a work in progress. He'll never be totally "fixed." He'll likely always have *some* issues. As hard as that sounds, I think it was really valuable to hear it, and to hear it early on. That way I wasn't blindsided if/when he needed help again.
When I read that last part, I busted out in spanish spewing my love for noah. "hay hermoso, chiquito." Hang in there.
Oh Amy....
I feel your pain. We just got denied speech therapy too. This is for my almost 3 year old that had a brain injury at 15 months. They said it wasn't medically necessary. Are you effing kidding me? He is missing half his brain and it's not medically necessary? What I want to know is who actually gets speech therapy. Where are those kids and what's there problem. Agh.... We have the school system evaluation on April 15th. We'll see what happens....
Hang in there, Elizabeth
BTW I have been reading your blog since I was pregnant with Jake. You have entertained me way more than you know....through 10 weeks of bedrest, through midnight feedings, and most importantly during those awful months after Jake's injury. Thank you.
Lilly! Dude. Wow, may suggest you suck it?! Way to dumb it down to an insulting, demeaning and glossed-over level. Awesome of you to meander on by and shit on Amy's porch!
That kid! That beautiful boy! Hang tough little one, your momma's going to take care of you.
Christ. That all but ate my heart out of my chest.
Maybe I read the last part wrong, but I thought "Good for him." Noah won victory on his terms, and he was proud of himself. What am I missing?
Good luck with everything.
Oh God love him!
I'm sorry, Amalah. I hope the insurance gods go your way.
Noah's talking to himself reminded me of this article on yahoo this morning - apparently it's very common for toddlers to save things they hear and process them later:
http://news.yahoo.com/s/livescience/20090325/sc_livescience/whytoddlersdontdowhattheyretold
It is a pet peeve of mine that all of the developmental assessments of our son have been done without other children present. In the last one, which was inconclusive ("Please come back in a year since you've only been doing this for 3 years already"), they almost got to witness a meltdown when the tester couldn't understand the friend's name he was saying. To her credit, it's an unusual name. But the observer handed him a piece of paper and a pen and he wrote it for them. Six months earlier, they would not have been able to stave off a meltdown in that way and might have had a better chance at seeing what exactly we had tried to describe.
We were so happy when he became eligible for therapy from the school district. Our insurance covers a total of 30 sessions of physical, occupational, and speech therapy per year for all three of us. Without the school's therapists, we'd run through their allotment in under 4 months.
Here's hoping the school district sees what they need to and loads you up on support!
Sigh. De-lurking to say I cried over that last paragraph. Then I cussed over what Lily said. I don't want to add to the craziness by saying what I really think of her words, but I want you to know that I'm sending happy thoughts to you and Noah and Ez and Jason. The words seem so trite, but I want to encourage you somehow.