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#61 of 77 Old 05-02-2008, 04:45 AM - Thread Starter
 
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I don't see anything wrong with a label when it comes to these conditions. These labels get my children services that help them feel comfy in an environment that is confusing to them. This is where my energy lies. In helping them navigate in a world that is not ready for differences, to love them for who they are and help them build their self esteem, to help them reach their full potential as members of society..however that may look as they enter adulthood.
Yes! This is my whole reason for searching for reasons and finding treatment. Lovely post!
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#62 of 77 Old 05-02-2008, 12:40 PM
 
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That's interesting how people react. I've had the same thing, except that the relatives are like "yeah felt that way but nothing's wrong with me. You worry too much." or "You should just except him for who he is. He's not Autistic, you know that." Umm, I do know that, that's what I'm trying to tell you; he's different and can use some help. It's not just my "bad parenting" that "makes" him act like this. You're right, he's not rain-man, brilliant you for noticing that - but why is your only concept of the word "Autistic" based on a movie from 20 years ago? :

Wow, that had nothing to do with the topic.... don't mind me. :
No, that does have something to do with the topic, because it ties in with causality and what you can do about it!

Many people believe either that the behaviors and issues that result from SPD are because they are "something mom did wrong" (bad birth, vax, tv, diet), or that the issues are something that your child should just "buck up and learn not to do." and neither is very helpful to either child or parent.

Maybe its because so many of my family are teachers - I don't know. But what I get from most of them is not "Tell him to start acting normal," but "I wish someone had understood this when I was a kid." -- and most of them get that I'm not making excuses but trying to help them understand how to help him when he flips out for what they might see as wierd reasons.

savithny, 42 year old moderate mom to DS Primo (age 12) and DD Secunda (age 9).

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#63 of 77 Old 05-02-2008, 12:51 PM - Thread Starter
 
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if a label or a cause or some explanation furthers understanding and helps us seek treatment, I'm all for it!
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#64 of 77 Old 05-03-2008, 01:01 AM
 
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something that annoys the heck out of me about people not getting it... most people totally understand that dyslexia is a processing disorder of the brain, right? They totally get that if you have dyslexia, you actually see the letters and numbers we see, but your brain processes them and jumbles them up unpredictably. (That's a total generalization about how dyslexia actually works, but for the sake of explanation, go with me here..)... YET, when you try to explain that SPD is a brain processing disorder, they look at you like you're just trying to make excuses for your bratty, picky, immature kid. I just find it very odd.

I have a friend with a child who has audio neuropathy, and another friend with a child who has auditory processing disorder. They find it equally frustrating to try to explain this mysterious processing glitch to their friends and family.
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#65 of 77 Old 05-03-2008, 06:09 AM - Thread Starter
 
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something that annoys the heck out of me about people not getting it... most people totally understand that dyslexia is a processing disorder of the brain, right? They totally get that if you have dyslexia, you actually see the letters and numbers we see, but your brain processes them and jumbles them up unpredictably. (That's a total generalization about how dyslexia actually works, but for the sake of explanation, go with me here..)... YET, when you try to explain that SPD is a brain processing disorder, they look at you like you're just trying to make excuses for your bratty, picky, immature kid. I just find it very odd.

I have a friend with a child who has audio neuropathy, and another friend with a child who has auditory processing disorder. They find it equally frustrating to try to explain this mysterious processing glitch to their friends and family.
Yes! It is very frustrating.
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#66 of 77 Old 05-03-2008, 08:57 AM
 
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He was born with both thumbs but the thumbs on his right hand is finger like, non-opposable, and has no knuckle. He is missing his right index finger. On his left hand his ring finger had a bone sliver inserted from a nubbin on his right hand that was removed so it will grow but he cannot use it. His doctors think this contributes to his SID. He does not get input the way you or I do through our fingers and hands.

Our geneticist thinks during the first trimester something blocked the blood flow for my son as he grew and that is perhaps the cause of his birth defects.

He was also born with hypospadia and renal problems. Now at a month from five he is still learning how to talk. That was not obvious at birth!

We return to the geneticist this month. My son has all his chromosome and he had a FISH test and nothing is missing on his 22nd chromosome as his last geneticist guessed might have a deletion.

Sincerely,
Debra
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#67 of 77 Old 05-03-2008, 09:26 AM - Thread Starter
 
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Our geneticist thinks during the first trimester something blocked the blood flow for my son as he grew and that is perhaps the cause of his birth defects.

He was also born with hypospadia and renal problems. Now at a month from five he is still learning how to talk. That was not obvious at birth!

We return to the geneticist this month. My son has all his chromosome and he had a FISH test and nothing is missing on his 22nd chromosome as his last geneticist guessed might have a deletion.
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#68 of 77 Old 05-05-2008, 10:46 AM
 
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something that annoys the heck out of me about people not getting it... most people totally understand that dyslexia is a processing disorder of the brain, right? They totally get that if you have dyslexia, you actually see the letters and numbers we see, but your brain processes them and jumbles them up unpredictably. (That's a total generalization about how dyslexia actually works, but for the sake of explanation, go with me here..)... YET, when you try to explain that SPD is a brain processing disorder, they look at you like you're just trying to make excuses for your bratty, picky, immature kid. I just find it very odd.

I have a friend with a child who has audio neuropathy, and another friend with a child who has auditory processing disorder. They find it equally frustrating to try to explain this mysterious processing glitch to their friends and family.
Ugh, yeah, I totally know what you mean.
Although....I'm (mildly) dislexic and people really, really didn't get it. I think it may be received better now, but it was actually about the same type of reactions as what I get for DS. "You mean she can't really read yet?!" "well you just need to make her try harder! She's just being lazy, there's nothing wrong with her." "She must be lying to you, that doesn't even make any sense!" These are lovely things to hear as a child. :
I think some just always have a problem with people who don't fit into their molds.
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#69 of 77 Old 05-05-2008, 01:27 PM
 
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Originally Posted by IfMamaAintHappy View Post
something that annoys the heck out of me about people not getting it... most people totally understand that dyslexia is a processing disorder of the brain, right? They totally get that if you have dyslexia, you actually see the letters and numbers we see, but your brain processes them and jumbles them up unpredictably. (That's a total generalization about how dyslexia actually works, but for the sake of explanation, go with me here..)... YET, when you try to explain that SPD is a brain processing disorder, they look at you like you're just trying to make excuses for your bratty, picky, immature kid. I just find it very odd.

I have a friend with a child who has audio neuropathy, and another friend with a child who has auditory processing disorder. They find it equally frustrating to try to explain this mysterious processing glitch to their friends and family.
All this plus heredity.

My Mom (born 1919) was called retarded, more often uglier terms. She is totally unable to write legibly (but she can type up a storm). She has no sense of direction, to the point that it is a family joke (with love). Many other "processing glitches" that show up occasionally, and more that she has compensated for so we rarely see. But she has 2 Master's degrees, and was a pioneer in her field.

We have just gotten in touch with a cousin (40 years younger) who has almost the exact same glitches! It is funny to hear them talk and compare symptoms. I have my share of neurological idiosyncrasies, mainly I just appear as a nerd who doesn't make eye contact, so people think I am aloof or snobby. But I truly can't handle certain chaotic noises, crowds, and a host of other common experiences. My YoungSon, 12, has a similar pattern, though with his unique flavor to it all.

So my Mom was called dumb, and received no support. But she also was born at home, no vax, extended BF, and never exposed as a child to many of the toxins around today. My cousin and I were considered behavior problems, sent to psychologists. We were both hospital born, bottle fed, fully vaxed, etc. All the well-meant therapy had nothing to do with what was going on, and we both just had to find our own niche in the world. My brother had delayed speech, dyslexia, and I am not sure what all else. And my boy is Dx'ed with autism, selective mutism, SPD, dyslexia, and I don't remember what all else. He was born at home, not vaxed, BF, and all that. We have had a total elimination diet (not really by choice), and know that with him at least, it is not diet. I am convinced that he will find his path as well as the other family members, but I think he has the advantage of no one trying to fix him.

On the other side of the family, my father was a musical prodigy, and spoke 7 languages fluently, and several more passably. He was a successful eccentric inventor; a total wacko in his habits, quirks, and life. If that isn't a description of Asperger's, I don't know what it is.

It seems to me it is the same package, just in different wrapping.

Rhu - mother,grandmother,daughter,sister,friend-foster,adoptive,and biological;not necessarily in that order. Some of it's magic, some of it's tragic, but I had a good life all the way (Jimmy Buffet)

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#70 of 77 Old 05-05-2008, 02:51 PM
 
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In my little family, I see us all having areas of sensory processing weakness. I imagine it has to be how our brains are wired. I feel like we each have unique challenges based on our make up. I'm not sure I buy the idea that anyone has perfect sensory processing. I figure it is a spectrum where some have more efficient sensory processing than others. We start with our genetic blueprint and then environment and life experiences come into play.
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#71 of 77 Old 05-05-2008, 07:55 PM
 
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All this plus heredity.

My Mom (born 1919) was called retarded, more often uglier terms. She is totally unable to write legibly (but she can type up a storm). She has no sense of direction, to the point that it is a family joke (with love). Many other "processing glitches" that show up occasionally, and more that she has compensated for so we rarely see. But she has 2 Master's degrees, and was a pioneer in her field.

We have just gotten in touch with a cousin (40 years younger) who has almost the exact same glitches! It is funny to hear them talk and compare symptoms.
OMG, are you my cousin? Your mother sounds exactly like my grandmother (born 1916). We used to say (again, with love) she was "dyslexic in space and time." She also had horrendous, illegible handwriting. Interestingly, my mother, who had gorgeous perfect Palmer penmanship when she was younger, now has handwriting very, very similar to that of her mother - and mom's brother does, too.

My grandmother was never called dumb, probably because her other issues were less pronounced (another family legend; both she and her sister so hated having anything binding around their waists that they cut all the elastic to all their underthings, and one day my aunt literally walked out of her underpants on the way up the aisle to the altar at church), and because she was very highly gifted. She married a wonderful man with a propensitiy for organization and order, who didn't mind that she really could never get to anything on time or do anything to a schedule without a lot of coaching, and raised a family of kids who each shared some, but not all, of her issues.

savithny, 42 year old moderate mom to DS Primo (age 12) and DD Secunda (age 9).

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#72 of 77 Old 05-06-2008, 12:57 PM
 
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What are you all doing for your sensory kiddos issues?

Biomedical? Diets? Supplements? NeuroSensory Center? DAN! ? Lots of TLC?

BTW, I think all these issues come from Genetics + Environment -- pollution, poor food supply, artificials, medications, vaxes, fillings, etc.

- very tired mom of DS#1 with SPD (8)
DS #2 seems NT (Almost 6)
DS #3 speech delay and who knows what else (22 months)
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#73 of 77 Old 05-06-2008, 02:23 PM - Thread Starter
 
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What are you all doing for your sensory kiddos issues?

Biomedical? Diets? Supplements? NeuroSensory Center? DAN! ? Lots of TLC?

BTW, I think all these issues come from Genetics + Environment -- pollution, poor food supply, artificials, medications, vaxes, fillings, etc.

- very tired mom of DS#1 with SPD (8)
DS #2 seems NT (Almost 6)
DS #3 speech delay and who knows what else (22 months)
I'm not doing anything biomedical, dietary, supplements, or neurosensory...but that is because we're new to this, and I'm still learning. I would love to hear any ideas and suggestions.

I suppose what we're doing is lots of TLC. It's very hands on, very active, very eye level, very child friendly. It is EXHAUSTING. I am so tired.

Thank you for saying you are very tired, too. I am really struggling with keeping up with the sensory needs and frenzy of near constant activity. I never have time to catch my breath.
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#74 of 77 Old 05-06-2008, 02:25 PM
 
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What are you all doing for your sensory kiddos issues?

Biomedical? Diets? Supplements? NeuroSensory Center? DAN! ? Lots of TLC?

BTW, I think all these issues come from Genetics + Environment -- pollution, poor food supply, artificials, medications, vaxes, fillings, etc.

- very tired mom of DS#1 with SPD (8)
DS #2 seems NT (Almost 6)
DS #3 speech delay and who knows what else (22 months)
Just living life the best we can and loving each other. Learning to respect and embrace our differences. Patience. Love. Redirection. Attention. Time. Understanding.

I don't believe that for us, a medical or nutritional approach would be helpful.

treehugger.gifAutistic pagan mama with five kiddos on the spectrum, learning through living life. autismribbon.gif  computergeek2.gif

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#75 of 77 Old 05-06-2008, 02:35 PM - Thread Starter
 
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Patience. Love. Redirection. Attention. Time. Understanding.


That is what we do, heavy emphasis on the redirection.
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#76 of 77 Old 05-06-2008, 03:27 PM
 
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I read about the Feingold Diet and GFCF in Mothering ages ago and when my DS started showing signs of SPD, I thought "If it works for kids with other issues, maybe it will work for my guy." And... it did!

We've done the GFCF diet (and no corn, no soy) and no artificials and taken a million supplements. And we've gone to the NeuroSensory Center of Eastern PA which has been really helpful for vision and anxiety as well as OT and PT and who knows what else!

Anyway, DS is doing GREAT but it's been a lot of work. Phew.
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#77 of 77 Old 05-06-2008, 04:03 PM
 
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Just living life the best we can and loving each other. Learning to respect and embrace our differences. Patience. Love. Redirection. Attention. Time. Understanding.

I don't believe that for us, a medical or nutritional approach would be helpful.
This. We did the GFCF diet but he is now eating normally again. I don't think it had anything to do with his SPD or ASC though... it simply helped a food sensitivity and his body can now handle those foods again.

Mom to Joscelyne 14, Andrew 12, and Mackenzie 10 and wife to Nate.
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