Tuesday, September 29, 2009

Email from Parents in the UK

I've noticed that the blog has had several hits from the UK and now I've had email as well.  Thanks again Natasha for allowing me to post, and best wishes to all.


Hi Amanda
My name is Natasha and I live in Edinburgh with my partner and our 2 amazing sons. After seeing your lovely wee girl on you tube and then finding your site I wanted to write and share our story .
When my son Reuben who is now 5 was about 6 months old he started  flapping his hands and making a grimace with his face. we all thought this was adorable and called it his ' crazy baby face' . As time went on and he continued to do this I became concerned he had autism. By the time Reuben was about 3 it seemed virtually impossible that he was autistic as he is sociable,great llanguage skills, intuitative, flexible in his routine, and very tuned in to the world around him. I am also a teacher who workes with a mixture of special needs and non special needs children and Reuebn was clearly developing in a totally ' normal' way. Yet his flapping and face grimace, while holding his breath, continued . Reuben was diagnosed with asthma and sleep apnea at this time and we had his tonsils out. This made a huge difference to his energy levels yet the flapping continued. We began to realise it was when he was excited and he could be interrupted by diverting his attention to something else. I started to get worried and one day a friend mentioned tourrettes and although it didn't fit exactly I mentioned it to his Dr. He also had another sleep study which showed up some central apnea [ not sure any link but might be useful for other families to know ] These can be totally normal in kids although could strenghten the idea of tourretes as they can go together. However I asked the dr if we could give it a bit more time before visiting a neurologist for Reuben to start school to see if the flapping stopped. I I have since looked up everthing I can on Tourretes but it just doesn't seem to fit. Reuben is now 5 and has recently started school , he says he doesn't flap at school cos he's not excited enough!! But i'll find out if thats the case at parents night in a couple of weeks.When he flaps I just say his name and he knows he is to try and squeeze his hands and be aware of his face and make a smile. He has been flapping madly in the last couple of weeks at home probably cos he's so tired from school. Today I spent another huge portion of my morning worrying about it, will he grow out of it? will he get bullied? will he suddenly develop some terrible sympton of something? I  decided to look it up on you tube to see if anyone else did the same and after watching loads of sweet kids flapping , who had autism , I came across your daughters video and couldn't believe it! It was identical to my darling Reuben. The face , the breathing , the hands. Then after reading some not very informative research papers I found your web site.
I know that I need a neurologist to diagnose but I am pretty convinced that Reuebn has motor stereotypy. And although I still feel a bit worried he won't grow out of it I feel so relieved to finally know what's going on. My little flapmaster is not the only one, he is a bright , funny , kind, loving , intelligent , curious , healthy wee boy.
Thank you for setting up this site it has really helped myself and my partner. I will now set up an appointment with a neurologist [this being the uk will take forever to get one] and any advice on helping Reuben to lessen his motor stereotypy would be greatly recieved.
Lots of love to you and yours and thanks again for taking the time to put those videos out there. We are happy for you to put this e amil on your blog.
Natasha and Michael

Thanks so much for your email Natasha!  I have been getting such good responses to the posting that it's made it worth it.  I was so nervous at first about putting it out there, but emails like yours have been very encouraging.  It is really amazing to see another child do almost the exact same thing, and I've only seen a few other kids do it (my nephew being one.) 

I have tried all sorts of things to help my daughter be more aware of the stereotypies but nothing has worked thus far.  They do go through period where they will diminish, but then usually come back again.  The research that has been done so far coupled with clinical outcomes had demonstrated that for many children these movements start really falling off in the teen years.  Every child is different of course so I assume that some could slow up earlier, some later than that.  I think the stereotypies have been more of a practice in patience for me.  I find that I get frustrated asking her to "settle" many, many times a day.  Then, I kick myself in the butt and remember that she doesn't do it on purpose and my frustration can actually do more harm than good, and that levels my own attitude back out.  She has made a few comments more recently on them and asking me how she can stop them.  That is what breaks my heart, because I know that as of yet there is really nothing to do to stop them.  Some therapies have proven to be useful for some children but not all.  It's just a waiting game really to see what research tells us and what nature does to slow them on it's own.  For now, she is a happy, social, lovable, and very intelligent little girl that has this quirk that we now have a better understanding of, which is what makes me happy! 



  1. hi natasha,

    just reading what you have sent, made me realize how important for us to have people like Amanda existing around us, a loving caring mom who knew that by sharing her experience and worries with other people she might be changing their life, and maybe she can ease things on them just by making them aware and certain about what is happening with their beloved children.

    Dear natasha, when I was reading your mail, I remembered the confusion, the despair, and the anger which was eating me and my wife, looking at our daughter simply not knowing what is happening or what shall we do or not to do with her, a mixed feeling covered with helplessness, oh I hate just remembering that time.

    and then out of nowhere I received an email with a YouTube video from my brother which was posted by amanda for her daughter, that's when I realized that this is typically what is happening with my daughter, after that things started to make sense.

    and to share with you all, what I realized after this period that all what you can do is to help your child to know when he is doing the movement without making feel guilty or ashamed of what they are doing simply because they can't control it, and what you are doing is exactly the thing that we are doing with hala, and that is by calling her name with a smile, and I started to notice that by now she is somehow in control of her movements, in a way that they look more socially acceptable, and this is another thing that you might teach your child to do, and that's by showing him the way to substitute the movements with other physical actions, like putting his hand on his leg instead of flapping them, or by closing his hands other than moving them…..

    another thing that I realized, is that the more the child is aware of the movements cause and timing the more he is able to control them, and I think that the movements is going to disappear once the child is in total control of the movements, and this is why the period defers from one child to another for the time that it takes for the stereotypies to disappear, and in almost all cases they vanish when the child is old enough to control the movements, or we might say by the time the child can develop the ability to substitute the movements into a more of unnoticed and more socially acceptable movement.

    at the end I have to send my friend amanda my warmest wishes for her and her daughter to be safe and healthy and to you too natasha.

    bless you all.

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