hand flapping and rocking | Autism PDD

Hi sallys,

I, too, have a spinning, rocking flapper. I, too, never really noticed those things until his dx (and I'd swear to you that he did those things ever so mildly beforehand, but to a MUCH larger extent after the dx). I hate it ... to be honest, it makes me sick when I see him do it be/c, as you said, it's like a slap in the face everytime. A daily reminder that my son is NOT normal, no matter how cute, sweet, and vocal he's being day to day. Luke was dx'd 2 months ago, and every now and then I still find myself reeling from the dx. I'm sometimes so very hurt and angry that this would happen to MY child, to MY beautiful boy who shows every sign of being super intelligent if it weren't for his speech delays (he babbles all the time, but barely speaks any words). All I can think of (especially on days like today) is what a gift my son would have been to society if he'd been 'normal.' Does that sound horrible?? Is it so politically incorrect as to be mean and wretched? I've still only been able to manage 5 hrs of therapy per week for him and I know in my heart of hearts that he needs more, but I'm having a hard time finding services (like ABA) in this area.

Ugh, sorry. This was to respond to your post, not to go on and on about my own guilt and feelings of pain.

Sallys, I hope you can somehow find peace with this thing. It's wonderful that your daughter is verbal -- even if it IS echolalic. I lie in bed wondering if I'll ever hear Luke say a full sentence ... or tell me that he loves me. Your posts show you to be very caring and loving and getting your dd the help she needs is the best you can do for now. God bless and have faith that things will get better.

Kellie
Yes, NT people also do some of these self stimming behaviors.....pencil tapping, tapping fingers, swinging their legs while sitting......my NT daughter did the handflapping when she got excited. The difference being when I told her to stop it because it made her look funny to others she did. Many of us do some sort of stimming with out realizing it. Our kids tend to do more obvious forms of it or let it become disruptive or distracting to others.

Kellie,

I know exactly what your talking about as far as those feelings of anger and hurt. And the forever questioning of WHY my child. Also the daily reminders that won't let us alone for a second sometimes. To always question whether we are doing enough. And the sadness of the realization that regardless of what we do and how much we do he will never be what most people consider "normal" Something I also think about is how cute everyone says he is now, and to be blunt with you all here...once he gets older it won't be cute anymore to the public. Especially if he still continues some of these behaviors. It may end up being down right sad. OF course he will always be MY child and I will love and cherish him regardless of how he turns out but I do worry as he gets older how the public eye will never be able to appreciate him the way I do. People can be cruel and ignorant and no one wants their child to have to endure negativity that can come from other people that are mean. So yea...i do understand where your comming from here.

Karrie

Megan flapps like you described and some days are worse and others are better. Megan used to spin non stop that has curtailed. Megan also bites herslef hard leaving marks and rocks very hard in her stroller. For us the signs and symptoms seem to change as we go soem being more evident and others fading off and then sometimes reappearing.. What a mystery some of this stuff is..

Do NT kids ever flap their hands in excitement or walk on their toes or spin?

My older NT children never did these things but I'm sure that there are some out there that have. But honestly for an NT child to do ALL of these things and to an extent that you are talking about...I would question it.

You know when I took adam in for his evaluation there were many things that he did that I never noticed before. I think if we are around our children all the time we get used to certain things that they do and don't question it until we have a diagnosis. I think that everything that you are going through right now sally's is because of the recent diagnosis. I think you are going to question everything right now. I'm sure that like a lot of us you are going through all sorts of emotions and it takes time to get all these things sorted out sometimes. Just know that we are here for you. I wish there were more I could say or do. Take care,

Karrie

My 3 year old dd has just recently beed dxed with pdd-nos, mild, high-functioning. In the past, I would say she didn't exhibit any hand-flapping, rocking, toe-walking, spinning, etc. (actually she does spin, walk in circles, toe-walk etc. but it is just seems like a little kid, not "AUTSIM", if you know what I mean.)

I was shocked when the neuro asked me if "she always rocks like that?". I honestly didn't know what he meant, and still don't. She does do this thing where she lies down and rocks her legs (and puts her hands down there, so it really looks bad!), she does this to go to sleep. Sometimes she'll do it other times and you can tell it's a self-calming thing, but mostly she restricts it to bedtime (I have told her that she needs to only do that when she's alone in her room - just because it looks like she's doing something else. She abides by that for the most part). I thought that might be "rocking" but I don't see it other times, like when she's sitting in a chair or at that dr.'s appointment (she was NOT lying on the floor there!). Well, HE saw it right away as we were sitting there. I would have just thought she was fidgeting, if I thought about it at all.

This weekend was a hard one and dd was having lots of meltdowns. I was talking her through one when I noticed she was flapping her hands in her upsetness. I've seen her do it a thousand times, when excited or upset, I just never thought "hand-flapping" before. It's mild and pretty short-lived, like she's shaking water off her hands or something. But the realization was like a slap in the face, it hit me so hard. I told my husband and then HE noticed it too throughout the day and said that he's seen it a lot too. I guess I thought hand-flapping and rocking would have to be extreme like sitting in the corner rocking or hands flapping for hours or something. She also flaps her hands in front of her body, whereas I always pictured it on the side.

Well, I have people telling me I'm making stuff up (not this because I haven't mentioned it) and I don't have another child to compare, so I just wanted to see if I'm reading too much into this. Does this sound like hand-flapping and rocking?

She also walks in circles, reciting songs or books, videos, spins her body (but not toys or parts) and when she does those or that lying down rocking her legs thing, she cannot really be distracted. Also, I noticed the other night when she was upset, she was screaming and yelling and walking on her toes. I have a friend who calls her "tippy toes" because when she was younger (liek 18 mos or so) my friend said she "walked on her toes." But it wasn't like she did it all the time, I myself barely noticed it. It just seemed like a little kid playing and then my friend would call her that and it became a game with them (she'd say Tippy Toes, then my dd would walk on her toes). I never though much of it, even when researching autsim. But still, there is the fact that someone who doesn't even see her that much called her tippy toes.

I just think it's all so subtle as to barely be on my radar but now with the dx, I guess I'm looking at everything diffrently. Not sure if I'm reading too much into these things (I mean, don't NT kids ever flap their hands in excitement or walk on their toes or spin???) or if I'm just seeing what's there for the first time. What do you think? I have always been so focused on her language problems and the echolalia and the meltdowns and fears and social issues, that I don't think I ever thought about or let myself see any of these types of behaviors. Now I'm seeing them. But am I reading too much into them because of her dx?

Thanks Karrie ... glad to know I'm not alone in my feelings.

Don't feel bad Kellie. I tend to go off on my own issues on someone else's post too. It's easy to get caught up when someone brings up an issue that you are having also.

I completely understand seeing signs when you SWEAR they weren't there before. After I started to learn about the spectrum, it's like ds would suddenly develop signs. Maybe some were already there that I didn't notice. Some maybe were barely there and just happen to increase in frequency. I never noticed the hand flapping until recently, but I believe I can recall him doing it often before I even knew he might have any disorder. And even though I know I've never seen dd do it before, somehow I just never thought anything of it. He's always just been my sweet lil man whom I adore and so of course I never looked for weird things. Like how could I have gone 2 yrs w/out noticing how odd it was for him to not play w/ other kids. I just figured he was a loner. Oh geez I just went off on a tangent. Easy for me to do. But yes I've noticed an increase even lately of rocking and hand flapping. Ds will flap arms while standing in front of the tv. I never saw dd do it. He was flapping his hands off and on while riding a merry-go-round at the fair just the other day because he was way overwhelmed. We had to leave shortly after. It was quite obvious to me now. But if I had known nothing of the spectrum (like before) I probably would have just thought it was cute and nothing more. I still think it's cute. I try to see the positive side of his actions. Like he makes very weird faces for no reason that people have commented on, and he does it a lot. Well, weird yes, but also cute!

I'm sure you're just still trying to take all this in sally. I am too many days. Ds's behaviors have blown up recently, after a couple weeks of seeming to mild down. Dont' know why. I think you're doing a great job w/ dd. You are always researching and trying whatever you can to do the best for her. And we're always here.

Amber

I think that once you hear a diagnosis of Autism you start noticing more than before. I'm not sure if it because you are more aware or if the little quirks that our kids do become more prevelent. I know once they started hinting about autism Tj would flap, rock, spin, jump and crash into things more. My speech therapist gave me the bool "Out of Sync Child" and it made things a little clearer. I, too, sometimes greive for the little boy I will never have, but I am delighted with every little step of progress he makes. I hope this makes sence. I just take one day at a time and try not to think about the could have beens and just focus on the here and now.

Kathy

Sallys,

I still rock myself to get to sleep. THAT is another thing that the psycologist told me that could be an "autistic trait". As children (I have 6 siblings) almost every one of us would rock back & fourth on the couch when upset or just bored, we didn't have a rocking chair... But I catch myself rocking back & fourth when I'm eating , Praying...while I'm on the computer... My SON , now he DOESN'T rock back & forth... He used to spin...ALOT. He hasn't done that in a while though.

God Bless you & your Family & keep you all safe!

LINDA...aka Tony'sMom...aka MWN64