SPD - no big deal in Germany

by Julie D.
(Germany, Ruhrgebiet)


We are on a 4 month familyrecover. 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.

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Dec 07, 2012
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spd in germany
by: tia

hi julie, your reprort is bang on.I am german and live in london.My son got diagnosed last week by some nursery staff spd here in islington.Last year I noticed his problems in germany*esp food introduction,noise sensivity,etc.but in germany I got completely ignored.really sad that you have to be your own analysts somehow after so many signs:(hope you found some nice people somehow meanwhile.I am quite alone with this here though they said every 20th child has spd....x

Oct 03, 2012
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SPD in Germany
by: Worried mom

I have a son who I think he has a SPD. We live in Germany. We've been seeing all these doctors for his issues. But yesterday I found some books on Amazon about SPD and I think he might be a case.

He has a very late development on language. He's 4 yrs and 2 days old. His level of language is more like 2 and half yrs old. When he gets frustrated, he screams a lot and he's not good with group activity and he also has problems with fine motor activities.

Could I call you? After I read your message, I can't stop worrying. If German doctor do not know about SPD, what should I do?

My husband think if he has speech therapy then it's going to be alright. But I don't think it's the only problem.

I have a daughter. She's 20 months old. Now I see how he was supposed to be when he was younger.

I'd love to hear more of your story. I googled today about SPD in Germany but I don't see anything.

Please write to me.

sugarritter@yahoo.de

Have a nice day.

Aug 18, 2011
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GSID
by: H

Have you checked out GSID www.gsid.de in Munich?

Jun 28, 2011
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Developing an attitude
by: Julie D.

Years have past, Vince is 7 1/2 y. now. Back to Germany I smacked the pediatrician with Ayres Book. First strike! Knowing which direction we are heading for I was enthusiastic again. We got diagnosed in a SPZ (Neurology) of 5 different disciplines. They care about my worries and I am always welcome. They affirmed the SPD and I was quite surprised he would show autistic patterns. They gave us a long list of advises, were I am still working on. (Choice of school, getting help of health insurance, a disabled status, more medical diagnoses, more books?)It is quite a fuzz to organize and realize further help for an SPD Kid in Germany. It is the enormous bureaucracy here ? argh. Form about form. But life is getting better bit by bit. And I take my time, because I start to understand Vince. And people around us don´t have to understand but they need to respect our tempo. I´m learning a lot ? more faith, more patience, being strong for Vince, taking time for myself (I now know he is exhausting ;-) ) still there are a lot of difficulties but I´m working on it. Thank you very much for you supporting comments! JD June11

May 25, 2011
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that is wonderful
by: Anonymous

I am so happy you found support in WA. Are we really the never, never? I am extremely disappointed to report however that I have not shared your experience. I wish I had I had never heard of this disorder before I had first hand experiences, nor is there support in our education system for children ~ as you so rightly point out ~ very much seem to need it.

Jan 08, 2010
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Free Sound Therapy
by: Steven Michaelis

Even in Turkey they do something about SPD !

You may be interested to check out the Free Sound Therapy Home Programme available from Sensory Activation Solutions. Their Auditory Activation Method builds on the pioneering work of Dr. Alfred Tomatis (Tomatis method) and Dr. Guy Bérard (Auditory Integration Training) and has been specifically developed with the aim to improve sensory processing, interhemispheric integration and cognitive functioning. It has helped many children and adults with a wide range of learning and developmental difficulties, ranging from dyslexia, dyspraxia and attention deficit/hyperactivity disorder to sensory processing disorders and autism. It is not a cure or medical intervention, but a structured training programme that can help alleviate some of the debilitating effects that these conditions can have on speech and physical ability, daily behaviour, emotional well-being and educational or work performance.

There is no catch, it's absolutely free and, most importantly, often very effective. Check it out at: http://www.sascentre.com/en_free.html.

Nov 17, 2009
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EXPLAIN spd
by: Anonymous

Capisco il tuo risentimento,in Italia la situazione è uguale, sensory processing disorder è sconosciuto.non si trovano informazioni su SPD.è stato un caso trovare questo sito. auspico che la medicina e la ricerca si diffonda con il suo linguaggio universale.

Oct 20, 2009
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A big deal for who is troubled with it
by: Silke

Julie, first of all I am glad you found this information. I also found SPD info outside of Germany, got most of my understanding of it from US and UK websites and publications.

We also live in Germany (Hamburg) and we also have a 5 1/2 year old with SPD (low muscle tone, tactile dysfunction, some proprioceptive issues, auditory) with developmental delays.

I feel for your anger as I have been feeling very helpless myself. Luckily we were referred to one of the local SPZs, the institute of Dr. Flehmig, leading specialist in Germany for sensory integration.

Our son has received OT, individual physio and is now doing a group therapy. He has been doing great and is advancing in great steps. We also have set-backs and what I find the most difficult thing here is that due to the lack of knowledge in Germany there is little to no understanding for these children and their parents, he is often mislabeled. ADHD for example is much better "known" here and this is easily but inappropriately applied.

You have to fight hard to find the right experts, proper treatment, good support at school and - most of all good support for yourself. I wish I could help you more. My thoughts are with you.
Silke

Oct 19, 2009
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SPD - no big deal in Germany
by: Anonymous

I am glad that you found out what is wrong with your boy. We live in Arizona USA and am having lots of trouble finding help there. We found the Star Center in Colorado USA and they are helping her alot. We are doing the out of state program and am seeing changes. I know that the USA is a long way to come but if it helps then it would be well worth it. Good luck and hope you find the right help.


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