53 Hours
When Life Hands You Lemons, Just Barf Them Up & Be Done With It

Backwards Motion

It's been a tough week. Power outages, Mamapop outages, booze outages, oh my. 

And then there's Noah.

Noah...well. Noah has not been receiving any real occupational therapy since school ended, and it's showing. It's showing HARD. 

He's a ball of tics, all of a sudden. A ball of walking, wiggling, finger-chewing, repetitive stimming behaviors. He speaks in scripts, he lives in rituals. He doesn't walk, he runs, while shaking his limbs and making vibrating-like noises with his mouth while every person in the area turns to stare because what the...? Ice cream is too cold, macaroni and cheese is too slimy, using a fork is too hard. He hums and squints and worries about everything. Last night he clapped his hands over his ears when I reached for the faucet because it was all too loud, TOO LOUD. 

He doesn't look me in the eye, anymore. His eyes stare somewhere off in the distance, right above my head. I repeat requests and questions to him, over and over again, before finally shouting his name to get his attention. He snaps back from outer space and seems surprised that I'm even there. 

"What?" he asks.

At camp, he's not participating as much as he used to, choosing instead to escape the group and spend his time doing laps of that strange wiggling-stim-run around the classroom over and over. Any emotional outburst from another child drives him up the wall. He begs to go to the OT room, a request the understaffed room can only occasionally grant, and even then, it's not the same without his therapist there pushing him, giving him what he needs in addition to want he wants. (Which is: Tire swing, all the damn time.) We sent him to the speech-focused camp simply because that's the one we had insurance approval for. Bad call, in retrospect, but...well, there's no rewind button on these things.

We're appealing our insurance's rejection of his OT sessions, of course. We have one more appeal -- this is our third, and we're doing it with help from Jason's company's insurance broker -- and then we get to file a complaint with the state and force yet another review and appeal.

A review and appeal for services Noah received in DECEMBER, by the way. If we're lucky, they'll approve our request for coverage through last...February? March, maybe? Then the process starts all over again, for the next approval of an extension of coverage for therapy that ALREADY HAPPENED. Now that it's obvious that Noah still desperately needs regular OT sessions, I'm guessing we'll be finishing up the appeals process sometime in 2032. 

(Insert crazy back-of-the-throat GAAAHZZZPPPBBBTT sound and a good head-smash against the wall)

I realize, though, that we are lucky -- at least we know what the problem is. We know what's missing and we know how to help. We can pay out of pocket, since the school district program is mostly concerned with his fine-motor skills and not so much the other havoc that dyspraxia wreaks on the rest of his body. It's just...so tough to see some of that hard-fought, so-throughly-documented-just-a-few-months-ago progress go away, but at least we saw it in the first place. He can do it, and so can we. Even Noah knows. He begs me every day when I pick him up from camp: I want to go to OT. I WANT TO GO TO OT. 

I know. And dammit, you're going to go to OT. 



Yeah, insurance companies pretty much suck goat balls. But here's hoping your will do the right thing for Noah.


Oh, my heart... I wish that I could say that this will be the last regression he'll have, but my experience with my son is that there are many stages in his life that he regresses. We have to reevaluate and rearrange and reinvent our new routines and "normal."

I am sending you so much cosmic support your head is probably hitting the ceiling right about now... Take care.


Good luck. I'm sorry the insurance company is so awful.


This absolutely breaks my heart! Hopefully the insurance company will rapidly remove that stick from their nether regions and actually HELP.
I hope one day Noah will understand just how hard you and Jason have fought for him. If not, you can totally save up the guilt trip points when he is being a bratty teenager! Good Luck!

Adam Wilson

You may have spoken with my wife before (Emily - FeuxDeForet) and she may have shared this with you before, but just in case: MOVE TO PENNSYLVANIA. Much easier said than done, but PA has *SO* many Free (as in beer) resources for kids like yours. Our 2nd kid has Asperger's and there are loopholes that get us TONS AND TONS of free help and support for home and school. We were considering moving close to D.C. until we discovered this. Email me if you have any questions.

And...(hug)...because you're an awesome mom and things will get better!


I'm so, so, so, so sorry. We much prefer reading the Noah-is-making-leaps-and-bounds-of-improvements posts, and you so much prefer writing them. My heart aches for him, and for you. DARN no-backs on these decisions, and darn insurance companies.


Rage at insurrance companies! WHY do we pay them anything at all when they refuse to help when their help is needed!

Noah is strong and brave and he will be just fine! I think this is a case of two steps forward and one step back! I do it all the time on my diet-plan =0D


A -

Would it help if you included a videotape of Noah (in the insurance paperwork) having some of these behaviors, versus an older (during OT-time) video?

Sometimes the visual gets through where words do not.

Amy M.

Good luck with the insurance company. I don't understand why claim processing has to be so difficult. I hope Noah gets into the program he needs & astounds you with his progress once again! Until then, your friends on the web send our support! (Okay, I've never technically met you, but I feel like I know you!)


Have you done a Sensory Diet with Noah? When things got stimmy with us, we did the diet twice a day and brushed 4 times a day. It really, really calmed behaviors. Wish I could say more, but I totally understand.


Ugh, so frustrating for you. I wish I would have stuck with my OT degree and I would help for free!

Sprite's Keeper

Gah, this stresses ME out just reading it. I really hope you can get things turned around soon for Noah.


I'm so sorry! My thoughts are with you- and maybe, just maybe- one of these days the insurance will actually GET IT TOGETHER....



My heart aches for you b/c I know it's got to be hard to see Noah regress a little. But you are your husband are great parents and he will be OK. I am currently waiting to see if the insurance company will cover a round of tests that my 6 month old son's opthamalogist (spelling??) ordered due to his Albinism. I don't understand why these things aren't covered if they are needed and we pay for insurance! Hang in there!


Sending you and Noah so many hugs, I can't even count them.


I know I'm not the first person to say this, but my heart hurts for you. Having to watch him, knowing what works and being held back from doing those things...ughhh!!!! My fingers, toes and everything else are crossed for you that this all works out the way you want it to.


I only live about 40 miles from D.C., so if there's ass to kick, I offer up my services. [awkward kung-fu moves]


I'm sorry you guys are going through this :( Just like you said- bound and rebound - he'll get back this territory and more when he gets his individual OT again.

All of the behaviors you've described would be more than enough for a spectrum diagnosis here in OC, CA. They would rubberstamp him PDD-NOS in a heartbeat. If you're wanting one just to make the insurance process a little easier (don't know how to link to that post or that other lady's comment), now might be the time to find a sympathetic neurologist.

Joy Estelle

So sorry. I don't get why the insurance companies much be so vile. I just got a denial for my son's 12mo well baby check up. They deny everything beyond all logic. So frustrating. Sending you guys lots of mental strength.


I keep trying to think of a more eloquent way to say this, but I can't, so: Fuck insurance companies. Right in their stupid ears.

And the idea Days had about the tape? Would that work? Would they watch it? Because that sounds AWESOME. If they could just see the difference...?


We are currently filing a 2nd appeal with our insurance company for sensory integration therapy coverage. From November (and December all the way through April). I have cried way too many tears over the whole insurance thing. It just sucks. And it sucks to see our kids (Noah has so many of the same "quirks" that my son has. SO many.) struggle with these things. Just wanted to let you know that we're in the same boat. And more and more, I feel like my boat is sinking.

Katie Kat

I'm just sayin... Insurance and airlines are the two biggest scams on the planet. I'm so sorry this is going on. But you guys are amazing for hanging in there and giving it a positive vibe. He DID get to a great place with OT and he WILL get there again... and beyond! (That sounded suspiciously like Buzz Lightyear).

We're all pulling for all of you and Noah and that the damn insurance company gets a freakin' CLUE.


I don't have any great advice, but just wanted to write in to say that I really feel for you. Hang in there.


this breaks my heart! hope he can get back to OT soon :-) xo


I'm so sorry you guys are going through this. Poor Noah.


I really don't have anything intelligent to say, but wanted to add my support. I'll be praying for you guys (or sending positive thoughts if that's a more PC thing to call it haha) and sending you iHugs too. You'll be okay. You are a powerful advocate for your child, and I wish you all the best in navigating the &*()$@#*&$#@^*!@ system.


You probably already know about this, but have you read "The Out-of-Sync Child" and "The Out-of-Sync Child Has Fun" by Carol Kranowitz? She also has one focused on SPD.

Noah definitely needs therapy and I really hope he gets it. Damn insurance companies -- they should be force to spend a weekend caring for him just to see what they're doing to the poor little guy. In the meantime, though, these books may have some things you can do at home to help him.


Fingers crossed that you guys get all the help Noah needs. Douchey insurance company.


It fucking sicks that you have to fight the system to get your kiddo what he needs. Thank God Noah has parents like you who advocate so strongly for him.

robin knowles

This is probably a stupid comment, but does he have a tire swing at home he can use? I bought a trampoline, when my son was geting therapy for SPD. It was the movement he seemed to crave.


While this summer regression sucks big giant donkey hooves... oh my God, Noah knows what he needs. He KNOWS what helps, and that means it really helps him feel better in his world. How awesome is that?


This is so heartbreaking. I'm sure this doesn't help you sleep at night:)

At least progress was made to backslide from!


I'm so sorry. I like the video presentation idea also - but not just for your insurane company - also one for each of your representatives and whoever else in your state legislature makes laws related to mandatory coverage. OT is so effective and incredibly cost effective compared to the limited and relatively useless alternatives.


insurance sucks a big donkey d*ck, so good luck with that. i just wanted to send some love your way, for all of you.


I know you are going to win. Mama bears always win. Especially when the baby bears tell them just what they need. We have been paying out of pocket for our #2 to receive services and it stinks. And stinks again. But oh, when they are not backsliding- it is such a beautiful thing. Thank you for making me feel not alone in fighting the good fight.


Just adding my hopes to those of everyone else.....we're pulling for y'all.


I am so sorry he (and you!) are going through this. I agree that you should document, document, document. Then document more as he progresses again.

This absolutely sucks, but it does show show how critical his therapy is for him.

Also, is there anyway you could, real quick - before school starts back up, get him re-evealuated for the spectrum?


Oh man, I am so sorry! You guys don't deserve this, Noah doesn't deserve this. Sending hugs and power to fight the insurance bastahds.


From the insurance post:

"The funny thing is, if we'd been able to see a developmental pediatrician last summer, I have no doubt that we'd have left with a PDD-NOS diagnosis, at the very least... by the time Noah was re-evaluated, he'd been receiving speech and occupational therapy twice a week for several months. "He's just...not," we were told, when it came to the Spectrum... Maybe he was, at one point, but not anymore, I mean, look at him."

So take him back and get the damn diagnosis. Problem solved.


I know you know this Amy -- but you can fight the school district. This is not the most special needs savvy district in the area and I know others who have had their private schools paid for because the district cannot provide for their children. It is a long fight, but might be worth it, especially if the county only thinks Noah needs fine motor help.


Someone mentioned sending a video. I suggest sending Noah. Can you find the main office of your insurance company? Oh hell, take both kids.
I told you before, I paid for kids to go to Florida for football. Put the damn pay pal button up.
We love you and the kids. Let up help!


Yeah, summer seems to be big on regressions. I think especially as they get older.


Can we just start a "OT for Noah" Fund? Pleeeeease??


I know it's a tough pill to swallow but I really think you need to get Noah a spectrum diagnosis. It will help so much to get you guys services and not have to worry about insurance, etc.


Is the school system focusing on fine motor because private OT has been taking care of the sensory integration needs? The OT's in my district provide SI services to kids who need it (i.e. Like how Noah has been acting with this regression) when it interferes with educational progress. Make sure you are documenting the regression as it can help make your case for ESY services for the upcoming school year. And I absolutely agree with incorporating a sensory diet schedule into his day if you haven't all ready done so.
The squeaky wheel gets the grease- keep advocating for Noah!! I work on a preschool evaluation team- and there is nothing more powerful than a parent with data who can make a rational, logical argument for what their child needs.


I'm sorry you've had such a crappy week, and i'm sorry you have such of scum sucking bastard of an insurance company. I'll be praying that things work out for you guys. Sending you hugs and booze!


Oh, I so feel your pain. We go through this every summer because our little guy is not "affected enough" for Extended School Year and he is not academically behind. So no OT for nearly three months and there is not OT in our town for children. We're trying to figure out ways to help him at home like jumping on a mini-tramp, providing deep pressure when he asks for it,etc. Sometimes it helps but mostly he's a mess. Hang in there and hope that someone mandates year round schooling for everyone.


Today was the last day of Extended School Year for my Noah. He did SO well. So many good days and he was so in control of himself the whole month. I want to bottle it. But I know when he goes back to he regular school, the longer hours, the more chaotic classroom, the less regimented work will bring up a bunch of the behavior and bring up some regression. I so know that.

We are currently fighting our insurance company too. Ran out of appeals. Are trying some other ways. They just paid for some 2010 billings. But not 2009. Why? Who knows. We just started another OT program that says we have full coverage. Then why didn't they pay the last OT program? Who knows.

I mean it is just sickening. Going around and around with them.

And here we are, holding out on a PDD-NOS diagnosis because I'm not sure he is. But I think we could find someone who would say he is. And maybe it would be easier. But would it be right? And why should the insurance dictate who he is? And would that do that?

...Just trying to say: I understand.


Oh no ... I'm so sorry to hear this. I know how hard it is to see and live with a regression. It sounds like you have a plan which is good too, but, people that shit to me all the time and it doesn't stop the worry and the nail-bitting anxiety and the questions and omg, the worry!
Hang in there, I get it, I totally get this exactly.

Momnivore's Dilemma

OT should be covered by insurance, but like all things health/wellness related...I think it's best to take matters into your own hands in the meantime.

You've seen the sessions, you know what he needs.

Although my son is a few years younger, we've been working the EI circuit, and he'll age out and lose all therapies in two months.

So, what does a parent do?

Well in addition to fighting the insurance company, I plan to treat my time with him as a "sensory diet".

Instead of paying upwards of $250/hr here in Chicago for OT: I am going to make damn sure that he moves and gets the sensory seeking he needs each day.

I noticed a huge change with the GFCF diet. Perhaps that's an issue you could reconsider?

How about:
Swimming. Gymnastics. Infatable bouncy places?

Tents. Tunnels. Swings. Hammocks. Beanbag chairs?

My Goal: DIY OT.

Dr. E


Speaking as a mom of a high-functioning PDD-NOS kid, I can't help but gently concur with some of your commenters: I would try again for a spectrum diagnosis. The behaviors you are describing are completely consistent with ASD, and at least from your description, no longer a borderline case. If you get the proper diagnosis, you do have a better chance of receiving the services Noah needs.

Definitely document the regression in detail this summer and use it as ammo for ESY next summer with the school district as there is no question that he needs it.

Oh, Amy, I know it is all so hard and likely overwhelming. Sigh. There is a constant ebb and flow, progression and regression over the months and years to which every parent who has such a child can relate. With adequate support and your obviously loving devotion, though, Noah will be right back on track, most definitely.

Plano Mom

I am a very peaceful person, sometimes to a fault.

For the first time in my life I want to go beat the hell out of somebody.

Instead I'll just keep on praying for your beautiful wonderful boy.

Oh yeah, and his brother is no slouch either.


I really like people's idea of a video. Only because, as I read your description of Noah it reminds me in some ways of my 5 year old son, who does not have SPD. Some of the stuff - the inflexibility (at times), the running around, the "selective hearing" can be normal at times and to some degree. I am definitely not denying SPD or your son's diagnosis in anyway at all. I am just saying that there are some that might make that mistake. A visual representation may have more impact. Just an idea.


Just to remember, because regressions are so awful and terrifying, is that partly they are about not getting what you need, partly also though about two steps forward, one step back, meaning they can really precede a breakthrough which the kid is just gearing up for (in that intolerable way that makes you doubt everything before it turns out to be OK). I hope he gets through it soon.


I also have to concur with Kerry and Dr E -- as much as you don't want to put another label on him, a spectrum diagnosis might really be in his best interest.

I have a kid like Noah -- he's quirky and has funky sensory issues, struggles with eye contact and social skills, etc. He's also one of the smartest and coolest kids on the freakin' planet. He's 8 now and we got the ASD diagnosis right around his 6th birthday (his initial diagnosis was SPD/dyspraxia). My DH and I were both sick about it - but it turned out the be the single best thing we did in terms of getting him services and accommodations.

I *TOTALLY* understand why this might be a tough thing to even consider.....but it might be what winds up getting him the support he needs.

Loretta S.

Argh...I got a little teary at the last sentence. Go get 'em tiger!


Oh, this breaks my heart. And also inspires lots and lots of rage at those damn insurance companies. Good luck with your appeals. I hope they see the light.


Same boat here. Same f@#%ing boat. Only we only get two appeals, not three, and I'm still working on the second. I am certain they will reject it. I am doing it anyway. What else can I do?

Fight Club got it wrong. It's not the credit card companies that need erasing from the landscape. It's the health insurance companies.

And that sounds crazy-angry for a nonviolent person, well, I am crazy-angry at people who deny children necessary medical treatment just to make a profit. With our kids it results in developmental delays, educational issues, and weird behavior. With other kids it sometimes results in death. Deliberately harming children for profit is not okay. And the fact that our culture doesn't recognize that a corporation that deliberately harms children is as evil and worthy of punishment as a person who deliberately harms children seems to me like a warning symptom of our society's eventual doom.


I'm sorry you have to deal with all of this just to get your child what he needs to have a bright future. It's ridiculous. Parents like you who care so much for their children deserve so much more than what ends up being provided. I hope they get their heads out of their butts and make things a little easier for you at some point.


Remember any comments I posted that my son is SO like Noah and my son has an autism spectrum diagnosis? I know you remember because it must have been ver-very annoying. Well, we got a re-eval now that he is 4 and guess what? He doesn't have it. BUT our services in North Carolina leave us with autism or not autism. So...now we don't know what he does have except that his sensory stuff is very much in line with Noah and other kids with sensory integration disorders. We are relieved but now lose services. This shit is so frustrating.

I have to find a way to get OT paid for by the school systems and they are so very broke. Our only saving grace is that his writing/drawing skills are so far behind they pose a major problem for his education.
Yay for an argument to take to the schools.
Do you have that option? Who did you need to go through for his diagnosis to get your insurance involved?


Blerg! I'm so very sorry that you have to deal with this bullshit. Noah is such a great kid and he doesn't deserve this insurance red-tape garbage. If I was Bill Gates (or even just like, my dad), I'd push the shit out of that donate button. Love to you guys.


I'd really like to see an insurance executive spend just one afternoon in Noah's shoes. Big hugs to you, mama, and Noah.

Kristine (Mommy Needs Therapy)

Fighting insurance companies seems like a never ending battle with our kids. Like we need something else to overwhelm and frustrate us.

I am so happy though that Noah recognizes that there are things he can do that help him. My Noah at 7 still doesn't understand that.

My one piece of advice is to document everything with as many details as possible. At some point, if you haven't already you are going to need to show that he loses ground over time without the services. I agree with the poster that said video tape too. You need actual data, like on 6/1 he had one melt down and held eye contact 9 out of 10 times, and showed no stimming behavior. On 8/1 he had four melt downs, held eye contact 2 out of 10 times, and showed stimming behavior X times in x hours. Stuff like that.

Wishing you a quick resolution.


Long time lurker to say that you could try getting a swing in your living room? It sounds crazy, but it has helped my son (who is on the spectrum) greatly. He can use it whenever he needs to and it was around $120, not too bad considering how much use it gets. It's called a 'cuddle swing'.

Mariana Perri

I am officially close to traveling to the US to personally strangle anyone who has any association with the stupid insurance company that denies a child the right for therapy!!!!!
I seriously wonder if pencil pushers who actually sign out these refusals have families!!! I mean, if they do, they must have perfectly healthy ones!!! COMEON!!!!!! Bureaucrats piss me off!

Plano Mom

Did I say in this post that I'm a peaceful person but this makes we want to beat someone up? I can't remember. But I was thinkin it.


Oy. That sucks. We lost our OT because they stopped taking our insurance and had to search and search to find a new one that takes our insurance. It's sucks and it's unbelievable that these therapies that work, that are documented, and that will save the insurance company money in the long run aren't covered. Blech.


I am beyond frustrated for you guys.


we can't get a bath chair because it "doesn't have a code"... mmm k.
I'm 4'11 and my son is 3, 35 inches, 25 pounds (and gaining), can't walk, sit, or crawl, can't lay in the tub because his stimming causes him to bang his head (and those stupid bath pillows don't help) but GOD FORBID anything be easier for us.
oh and forget the stander that we payed for out of pocket after being denied that has prevented a pretty expensive surgery that insurance would have had to pay for.
sorry for that little rant. Insurance companies really tick me off.

The comments to this entry are closed.