It must be SO hard for you, especially when you know how he can be when he gets the help he needs. I REALLY hope you get your situation settled, to your satisfaction.

You got this! Keep fighting! I know you will, but I figured an "Amen, sister!" couldn't hurt.

Keep on fighting, Mama Bear. How frustrating it must be for him to have so much energy that just NEEDS to come out of his body SOMEHOW. Here's to hoping the remaining days between now and going back to school are fast and easy, and he can get back on track. I can only imagine how much better he must feel in his own body when he's more in control.

It sucks that you have to do this. But it's good that you do. A picture (esp. a moving one) is indeed worth a thousand words.

That looked remarkably similar to what our son was doing last night. We are so happy school (and therefore OT) will be starting on Thursday. Summer is hell and our little guy doesn't qualify for ESY because he's "too smart"....Yes, he's academically advanced but he NEEDS the structure. Too bad laws don't take that into account. Keep fighting the good fight and doing the best you can. It's all any of us can do.

Okay. I know Noah isn't autistic because you've said so in the past and because the team of professionals entrusted with his care says so too. I'm not second-guessing you. But, there are a lot of people--like, professional doctor people--who, looking at that behavior and the signs you've reported elsewhere, would be ready to give a diagnosis of ASD. Is it possible to get the diagnosis to get him the help he needs? Would that even work for y'all? I had to finally insist on an Asperger's diagnosis when my boy turned 9 because otherwise all OT would have been stopped. (Of course, in his case it was true; just no one had wanted to "give him that label" before.) I'm sorry if this is too assvice-ish. I hope the insurance company grows a heart and shells out the bucks for the help your little man benefits so much from.

I get it now -- I had been wondering how this is different from what my three-year-old does, and the difference is that mine can control it and does do it to perform and have fun. I can tell how stressful this is for Noah and for the rest of the family, and I hope you are able to get him back into his OT soon so he can continue doing well.

I am sure Noah's issues are real and I know how hard he has worked to get over some of his issues. BUT, I kept waiting for a behavior that seemed off and all I could see was a boy that was acting exactly the way my five year old boy acts. Even more so when he was 4. He has chilled out a bit since turning five but, honestly, he is a typical 5 year old boy and acts the same way A LOT. As do most of his friends. I am not saying that Noah doesn't have issues but that behavior right there would not throw up any red flags for me or anybody watching without the whole picture. My son also went through a stage where he was sucking on his fingers for no apparent reason. It lasted about 4-5 months and then dissapeared. He is a typical kid and we mostly just didn't make a big deal out of it and it stopped eventually. I hope you get the help you are looking for with your insurance. I know how difficult that road can be. I hope that didn't sound judgemental but maybe it helps to know that maybe some of his behavior is not so out of the norm.

Oh, poor kiddo! Way to keep up the fight - it'll be worth it.

LB - We removed all artificial colors and flavors from Noah's diet last year, and from stuff like soap/medicine/lotions about six months ago. It definitely made a difference...but isn't enough on its own to solve "everything," you know?

Schoolofmom - The endless debate. A spectrum diagnosis might help more with the school district down the road, but our insurance would then consider that part of mental health coverage, which at least on paper, sucks a lot of ass. And besides, his current diagnoses ARE COVERED. They just...still reject claims for one reason or another, regardless of what code it gets filed under. So. Appeal appeal appeal, file grievances, etc.

As for this being typical hyper little boy stuff...I don't really know how to counter that without just saying that no, it's not...but no. It's really not. At least not for Noah. Maybe a video of him from a couple months ago would make that a little more obvious, or of the times he's thrown himself off the couch and hurt himself, or what happens when this need to MOVE!RUN!JUMP!POUND! happens at school or in the car, or when it blends with anxiety or panic. Not saying that he DOESN'T have plenty of times when he's just a hopped-up little kid, but there's a level of COMPULSION, of I WANT TO STOP BUT I CAN'T, that has gotten really obvious in the past couple months.

I know I probably freaked you the hell out at blogher. Thanks for being nice and at least pretending not to back away slowly.

But yeah, we deal with this too. We're having a bitch of a time getting services in place, and there are days where mine will repeatedly throw himself at walls, and the bed and anything else in his way.

@Michelle, I know it's hard to see the whole picture, but this is about self regulating. ASD or SPD kids have a really hard time learning to self regulate themselves vestiublarly (is that a word? no? it is now). When your son went through his phase, it came and went. This is something we deal with on a regular basis. It doesn't magically right itself. Thus the need for OT.

Amy, I've been following your blog for a few years now and I never really *got* what you were talking about until now. I don't even really know what to say, except what you may already know...you have tons of support out here in Internetville. Hoping you get good news soon.

Hugs for you and your whole family. That's really all I've got. And e-hugs at that. Lame.

Amalah and @statia,
I fully understand the difference. I just meant that seeing just a snippet of this behavior looks just like any other 4-5 year old boy that has a lot of energy. I have been reading since Noah was an infant and continued to read along when my son was dealing with speech issues and recieving speech and ot himself. He is mostly typical now (whatever that means) so I have been down that road, although our insurance didn't cover one cent. I am just saying that seeing just a couple minutes doesn't look that differnt from most 4 and 5 year old boys. Obviously if this is something that he can't control that is very differnt.

What hit me the most about this is how much it reminds me of my godson, who finally has a PDD-NOS diagnosis, which took waaaay too long to diagnose, for various reasons (none to do with his parents' love and efforts). He's eight now, and his parents just moved to another town/school district because they were just bashing their heads against a bureaucratic brick wall and considering lawsuits just to get their son the basic services/assistance/therapy that he's legally entitled to. As my friend said, "We moved so he has a chance." When he was younger, we all (inexperiencedly - is that a word?) chalked his behavior up to typical high-energy boy. And he's had some OT since age 3-ish. But it got worse as he got older, became much, much worse when there was change or transition. Once you've seen the behavior, and know what it is, and how it starts, you can see how it's just a bit different from normal high-energy kid behavior. Like Noah, my godson is so, so smart, but you have to get the keys to unlock all the stimming, etc. so they can BE their smart selves.

Keep on, keeping on, Amy. We are in your corner.

I don't know which wrenched at my heart more- Noah's stimming or hearing Ezra cry in the background. I will assume Ezra's cries were waffle-related.

Thank you for sharing that. Not that you had to or anything, obviously, but as an above reader mentioned, it does help to better understand what you and Noah are working through.

I clutched my chest watching that. Not out of pity or anything, but because I just want so much for Noah to get the help he needs and deserves. You keep fighting those insurance companies Amy. DAMN THEM!

Oh, Amy, that just made me tired. I know you are - tired of fighting it, and of knowing that your baby is struggling. I hope school is starting soon for him. We start on Thursday, and I'm looking forward to getting back to some structure. Heck, maybe Speech therapy will actually ACCOMPLISH something this term!!

NOT typical 4-5 year old behavior. my son does this daily. and he gets OT (only once/week right now). he has classic autism; and this is textbook sensory behavior. amy, do you mind sharing what OT does to control this type of stimming? because i've never thought to ask. i've only assumed it was just part of J's autism and didnt even think to 'fix' it. please please please fill me in! i love your blog, has to be my favorite, and i just love noah. keep fighting!

I don't know your history (i.e. this is the 2nd or 3rd post I've read of yours) but he looks like a normal, (maybe bored) kid to me. Of course, I don't know the whole story - but I saw nothing abnormal from that video. In fact if you stuck me in front of a tv, I'd probably not act so differently. TV is such passive stimualtion. No one in my family (including my 12yo girl) just watches tv. We all do puzzles, read magazines, play a computer game, draw - with tv on incidentally, sometimes.
I felt his boredom - if that makes sense. I can't imagine having to sit still on a couch to watch a movie - unless I'm sick.

I come from a family of super energetic people - but we all live long and strong. My 93yo aunt gardens every day. We're all just very hyper - poor kid. I wanted to take him out and run him around when I saw that video. I feel him.

My God, people! Stop arguing with her and telling her she's wrong. YOU'RE wrong. It's NOT typical.

ok - I know I'm going to get mad flamed for this, but after reading your blog on and off for a few months, I've got to at least ask - aren't you a little bit concerned about Noah's privacy in all of this? There was a post a day or so ago about a violent episode. You wrote about how it's scary to think that if he acts that way in a mainstreamed environment that he'd get kicked out of his mainstreamed class. Why share the episode on the internet, then? If, heaven forbid, he does have an episode at school, what are the chances that other parents are already going to have preconceived ideas about Noah and his ability to control himself? Instead of just one isolated incident, someone's going to say, they knew about this - they knew he could be violent - he's got a history - and they put my kid in the way of physical harm. Fair? Maybe not, but neither is not giving Noah a chance to have a clean slate with anyone. I understand that this blog makes you money and enables you to stay home with your kids, and you are a talented writer, but at some point, I have to ask, are these posts really about Noah and what's best for him? Putting a video up for everyone to see of Noah working through a tough time when he's 4 - 4! - seems a little bit much.

While some of you may be innocently telling Amalah all is well, that is NOT typical behavior for a child who is trying to watch tv. She knows this, and so do the professionals that have diagnosed him as well as the highly specialized schools they are footing the bills for.

Unfortunately too many children are not getting the therapies they need (whether it be Sensory Intergration or Autism Spectrum) because the health insurance companies are not paying and are argueing with parents and providers over what should be covered and what shouldn't.

I work for a company that provides ABA treatment and we had to stop a military program and switch to Out-of-Network cuz we weren't getting paid either. This means our rent for the office and our therapists dont' get paid. It's not right on way too many levels for too many people, but most importantly the children because research shows there are definitely therapies that can help, and the earlier the better.

While some of you may be innocently telling Amalah all is well, that is NOT typical behavior for a child who is trying to watch tv. She knows this, and so do the professionals that have diagnosed him as well as the highly specialized schools they are footing the bills for.

Unfortunately too many children are not getting the therapies they need (whether it be Sensory Intergration or Autism Spectrum) because the health insurance companies are not paying and are argueing with parents and providers over what should be covered and what shouldn't.

I work for a company that provides ABA treatment and we had to stop a military program and switch to Out-of-Network cuz we weren't getting paid either. This means our rent for the office and our therapists dont' get paid. It's not right on way too many levels for too many people, but most importantly the children because research shows there are definitely therapies that can help, and the earlier the better.

Amy,

I'm a special ed teacher and seeing that threw red flags for me all over the place.

No doubt he is really struggling right now. I don't think it would be a stretch to say that he is struggling and thus, you ALL are struggling.

Taking video such as this is imperative. Keep taking it. I know it feels counterintuitive to capture video of your child at his "worst" but you gotta do what you gotta do to save him.

It's crystal clear and I'll tell you something else-
Years later (and with three kids of my own), I still think Noah is one of the most gorgeous, deep-down lovely kids I have ever seen. Thank you for sharing this boy with us.

Geez some people love to dish out the assvice don't they! Yeah, just let him run round the yard a bit or do a puzzle, that'll sort him out.

Thank you for sharing this, I now understand a little more of what he goes through when he doesn't get the consistency of the help he needs.

Amalah you are one awesome mother, you keep at it. I know it's exhausting but you will win, you have to.

Oh DUH, Amalah, why haven't you realized that, like Sally M. Ataya says, the problem is simply too much TV and a lack of gardening. Problem solved!

Did he have gum in his mouth, when you told him to stop? If so, that's the one "normal" kid thing I saw. Everything else makes me want to go beat up an insurance executive.

I agree that his behavior, while certainly not outlandish or even something that would immediately grab one's attention, does look compulsive by the end of the video.

Good on you for taking video as a new weapon in fighting the insurance companies. They can really be hellacious bastards at times.

Keep it up, mama.

I'm sorry - I love you, I love your blog, I love Noah - but I have to agree about this maybe going a bit too far. I understand what your intentions are in posting it. And, unlike the poster who thinks that you're just trying to give yourself a pat on the back, I strongly disagree. I think it's partially about education and awareness of a very misunderstood spectrum of diagnoses. And, I love that! I love that you are helping to eliminate the stigma. I also think that a lot of why people love you and your blog is your willingness to just lay it all out there - you seem to try to be 100% transparent, and that is what draws people. It's refreshing.

BUT, I felt almost uncomfortable watching this video. I work in the field. And no, this is NOT typical (the end particularly). That is stimming. My heart aches for Noah - for the difficulty he is so obviously having right now. Show it to the insurance companies. Show it to the teachers. It is SO helpful to see the behaviors that parents talk about, but that you might not get to see in an hour weekly therapy session. But show it to the internet??? It seems to maybe be crossing the line of his privacy. What if someone would find it amusing, and put it up on You Tube? And it went viral? I know, a lot of what ifs.

In the end, do what you know in your heart is best for Noah. But please, remember that you are showing him during a very vulnerable state, and he has no say in it. That's all. I still love you!

Long Time Reader,First Time Caller. Having read for years and seen so many stills of Noah, this was amazing to see. Well done for sharing. I am sure that you are a resource for many many families and your honesty means a lot to them. You are showing all of us how to be our our child's best and sometimes only advocate.

This! This is my PDD-NOS 6 year old. Flinging himself into furniture over and over and over again. This is my son after two months of no OT. Anyone who says it's normal it is NOT. I have a 4 year old too, a typical 4 year old, and while he quite likes jumping and has a short attention span, he does not have a compulsive need to throw himself into furniture. And Sally...you try taking my kid outside in 95 degree heat and watch him go into heat sensory overload. He laszsts 5 minutes these days. What horrible advice to give to a mother who knows what's best for her kid. She just can't get it.

Oh and because of this video I finally made a call the the developmental pediatrician I have been meaning to call for weeks. Because we need help. So that's what amalah is doing by posting this video. She is helping others.

I bitched about the crappy (aka NO) service we received from NYC Early Intervention for our son, who was born 13 weeks early, on our blog. Long story short, I received a call from the head of the service w/in 1 week of the post and Jack was in therapy 2 weeks later. Thump your chest, you're doing the right thing.

Oh, golly, this makes me want to go medieval on your insurance company, and that's not even my bear cub. Holy cow. To watch your son go through that, knowing that it's unnecessary and completely fixable? I am SO SORRY that our system is set up this way. It's just SO WRONG on so many levels. My heart is wrenched.
As are many of the commenters. You know you are, and you should consider yourself flamed.

I enjoy reading your blog. I'm an OT (currently a stay-at-home mom). I like the barter idea. I bet you could find an OT who would barter services for something. Maybe someone not hooked up with an agency. An OT, like me, not currently practicing, but who would have the experience...

I have no idea what to say because I have 5 sons and have seen all this stuff ...but I have sons with special needs, I think, in my case because it is all I have ever know, it is MY normal! I have a son ( 2 actually) who is on the autism spectrum and quite by accident, he was driving his 21 yr old sister to distraction with his leaping and barging, she caught him in a head lock, we discovered he LOVES having his head squeezed, as she held him tightly into her body he relaxed immediately and said "Oh that feels SO GOOD!" Now, if he gets like Noah and is out of control and miserably active ( all that sighing and the facial expressions show he is not having fun!) we ask him if he wants a head squeeze, he stands next to us and we literally put his head between out body and arm and push into our body. The relaxation is immediate. Maybe when you are sitting next to him you could try and see how he reacts, Isaac sits in front of me and I put a hand either side of his head and squeeze...he is up for a head squeeze any time of the day or night, not just when he is stressed. Isaac ( 9) also likes being wrapped in a blanket while he watches TV, again with the squeezing thing, for some reason it makes them relax and we don't get so much of that ' I have to get this feeling OUT'

Wow. Very brave of your to video tape and also for sharing. I suspect there are a few readers out there now wondering about their own kids behavior. My Noah does the same thing. He can't sit still, ever, at all. I NEVER WOULD HAVE THOUGHT there was a problem with that, I mean, boys are are full of energy, right? It's a real kick in the pants to find out this ISN'T normal. I hope you get the needed OT soon. Even on weekends Noah has language and behavior regressions.

Oh, Amalah.
Your poor little dude- I mean, I can see that he's just trying to...I don't know, exist inside his body in one spot- and it's really really hard for him.

Thank you for showing us- and I continue to be one of many who stand behind you 100%.
((HUGS))

Amy, let me start by saying insurance companies are the worst scum of the earth, but you already know that. Let me tell you something you may not know - you are a champion. Have you tried filing a complaint (or ten) with your State Insurance Commissioner? Best wishes for you and your sweet family.