Living with clothes issues in children

by Candis
(UK)

Hi I just wanted to tell you all about Becca's blog that tracks the daily challenges of living with tactile defensiveness, especially clothes issues. Feel free to contribute and let me know your thoughts and if you've had dealings with similar situations too. There's no specialised help here in the UK so any contributions would be gratefully received!


http://thetrialsoflivingwithspd.blogspot.com/

Thanks again.

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Jan 12, 2011
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SPD in the world
by: Anonymous

How many children are misunderstood and mistreated for their strange behavior caused by the SPD and how many parents accused of not being good educators. not everyone is aware of this site. You the mothers who live in the USA tell doctors that your children do get their knowledge in Europe. thanks

Jan 12, 2011
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to 'anonymous' in Germany.
by: Anonymous

Please don't blame yourself. I'm completely in awe! How you've managed to get through is completely amazing and shows exactly why you're boy is yours, it's not because it's your fault! It's because you are one of the fantastic mothers that can do this! Your determination is wonderful and I do hope you feel better soon. I know how it gets depressing, goodness knows how many times I've cried myself to sleep over the 11 years I've been fighting to get my daughter's condition recognised! But we go on and we get by because if we don't they win, and I'm determined I'm not going to let that happen. I'm going to make so much noise about this condition for my child, me and every other mother out there that feels the way we do and I hope you carry on doing the same. I am inspired by people like you, please keep up the great work x

Jan 12, 2011
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SPD in Germany
by: Anonymous

We are on a 4 month family recover. We chose to do Houseswapping from Germany to Australia, because we are just burned out. We had good and bad days around here even if the surrounding is just perfect. We have got time, we have got space - no appointments, no work.

Strolling through a local library I read everything that is wrong with my boy in a single chapter of one book, by incident?! Here in Western Australia in the real never - never, everybody seems to know about Sensory integration dysfunction.(Even a waitress patted my shoulder and said, my daughter has SPD, while my son cried about nothing) I started reading books and tears kept running, why don´t german specialists know any better,( The told me:it is maybe epilepsy or we don´t know, go check his eyes he might need glasses).

I knew something is wrong with my now 5 1/5 years old Vince when he was few month old. I am really interested in kids development because I had 4 miscarriages before. So I want to do everything right and there is an enormous amount of love to give. But it turned out to be a nightmare ... I don´t understand my own child. Why does he cry when we want to go somewhere nice, why does he cry after a calm visit at grandmas house, why doesn´t he just get into the car, why is he paralyzed when he gets into Kindergarden and is supposed to just put on his shoes, why does he hurt himself by accident all the time, why can´t he remember easiest routines we are practicing since he arrived at the world - I started to get angry, very angry and guess what it doesn´t help, patience doesn´t help either.


I blame me, I do sports, I got self employed and run a good business - teaching, I went to rehabilitation, we took long holidays, I talked to friends - nothing helped. At the same time I get my Vince checked at innumerable institutions in Germany, pediatrists, occupational therapists, psycologists, motopediatists, dentists, cranio sacral therapists, neurological clinics, no one has a clue ... I just don´t believe this!

I am a wreck at the moment but relieved knowing whats wrong - Vince shows the full spectrum - but where do I get help? Searching the Internet there are people talking about SPD in Chile, Israel, Australia, Canada, USA but what´s wrong with Europe? The play it down to a little disturbance of awareness, no need to worry that will grow out. But it doesn´t. The everyday life is so difficult I can´t go any further without help.

And now I know I will take my help. I am still angry but at all those ignorant institutions I have met so far and I will release my anger by informing them all about the seriousness of SPD.

Jan 12, 2011
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raising awareness
by: Anonymous

This is fantastic that we have an opportunity via this website to realise we aren't alone. It is so encouraging that parents from all over the world can see exactly what others are going through in similar situations. If it wasn't for this website I think I'd have cracked up with frustration by now!

Best regards

Candis

Jan 12, 2011
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SPD In Europe
by: Anonymous

Hello Candis from UK, I can tell you that I live the same difficult situation in Italy: For children who suffer from sensory problems, there is no help or therapy.and through this blog we had more information about the problem. While the United States SPD is known and treated. in Europe, there is not help, and thousands of children live their lives with daily discomfort. Anyone who has access
signals to the media this reality in Europe.

Jan 12, 2011
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thank you
by: Anonymous

Hi, yes I know how frustrating it can be as a parent in the UK, it seems as though nobody wants to take SPD seriously. The blog should be easily accessible through the link thetrialsoflivingwithSPD.blogspot.com Feel free to message me through this link. I completely agree that the more of us that shout, the more likely we will be heard. Good luck and kind regards,
Candis.

Jan 11, 2011
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Totally agree!!!
by: sharon UK

Am glad to see someone else in the UK can see how much we need help in the UK for SPD my daughter has it real bad with clothes and is very OCD about certain things in her life has to follow the same pattern everyday.. I am going back this week as last time was just told to go home and read a book about it... Us and our children are getting no support and i am looking into ways of making the Public more aware of what SPD is and trying to set up some sort of support group locally and on the net... Not sure how to get on to your blog and have spent many a night trying to find out all i can on SPD as their is nothing for us in the UK it makes me so mad...

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