"Not Normal" or " Not Normally developed"- important issue

Replies:

• 
• by
  • simsamsue
  on Jun. 10, 2007 at 1:38 PM
• Michal,
  I agree whole heartedly with you!!  Normal is so relative.  It just depends on what is normal for you.  Everyone you talk to has a different normal.  Why do they have to put it that way?  I don't know, but it drives me crazy.  I have 3 kids none of which are normal if you compare them but all of them are perfect just the way they are!!

• 
• by
  • micO
  on Jun. 10, 2007 at 5:14 PM

• I think that if the person who wrote it was thinking of our children in comparison with NT pchildren, then- yes, she could say they aren't normal (aren't the norm)compared to them, BUT she didn't mention that it was in comparison with NT kids. she just said not normally developed, and that just got me really angry because compared to others like them, our kids ARE very much normal.
   As I said and as you said, it's a relative term and if she's not prepared to explain exactely what she means, when using such strong words that mean different things to different groups of people, then she shouldn't use those words (she should use gentler ones instead- she could have said they have developmental delays or they are different in some ways or something of a sort).
  
  Thanks for replying,

  
  Michal

• 
• by
  • tamsmom
  on Jun. 11, 2007 at 12:11 PM
• 
  

  Quote:
  
  DO any of you feel that your children aren't normal or that they don't develop normally? Can't we all just use words like "Different"?

  
  Hey mic. I have to admit, I've been guilty of this also. The first time I had that thought was when our neuro said to me (quite strongly) that my kids behavior was not normal. I felt like someone had punched me in the gut.
  
  But the thing is...she was right.
  
  I had a really hard time accepting that "not normal"....but heres my thoughts on it at this point.
  
  Tami's first year of life was so so rough. Its not her fault....but, the truth is that her behavior was not geared towards her own best interests. If she had been allowed to live life on her terms totally at that point...she would have died mic. Behavior that can lead to the death of my child...I feel it needs to be called not normal. Because it has to be changed in order for her to live any kind of life...let alone a life thats worth while to her. And if no one had tried, shed be dead or...she still might be a kid that can not function enough to live. Can't stand being around people. Touching people, interacting with people at all. She might still be a kid with serious enough eating issues that just getting her to eat enough to grow would be a fight. A kid that would rather spend her time rocking rocking rocking...or stepping off high ledges, or struggling to get away from people, or running from them, or hiding from them....then experiencing life. Unable to stand the human voice talking to her. Screaming if you talk to her...later slapping you if you talk to her. Slapping you if she accidentally made eye contact with you. That used to be my kid. She was so hypersensitive...I doubt she wanted much to live...she only wanted to get away from touch, sound, motion and oral stimulation. How would she live then? At that point...no. Tami was not normal...she was not functional. And functional is normal.
  
  As far as developing normally? Well...I think she actually is. Now. Delayed...but well within whats normal for humans as a species. And I think once the life threatening issues are gotten past....then we do need to treat, love, consider and teach our children and the world that they are normal. But there are times, and children...that we can't call normal...because if we do, they won't be able to live. And they would not develope normally if we didn't get them past the severe issues.
  
  And is she normal? Yes. She absolutly, definately is. Her emotions, her needs...everything that makes her human is normal. Her soul I guess you'd say. Its normal to want to escape pain...and thats all that was happening when she was little. Her senses were not (and still are not quite) normal...her behavior in response to it all was totally normal. I don't think I see anything else thats abnormal in her. Difficulties...but all well within the range of normal.
  
  I'm not sure I'm making sense. But I guess what I'm trying to say...is that there are times when its ok and in the kids best interest to say they're not normal. But once you get past the severe issues that would keep them from ever living life...then yes...normal normal normal is the keyword that needs to be said often. At your point in life...your normal mic. I think my hubby has aspergers...and hes normal. I have my differences from other people...and I'm normal. Temple Grandin is normal at this point. Some kids are so mildly autistic, that they should always be considered normal...some are so severe that they need to be considered abnormal...right up to the point where they become capable of functioning. Then they're normal.
  
  I feel sad for that young woman whos mom was posting about her....it sounds like shes reached the point of being normal...probably did a long time ago. And its sad that her mom still sees her as not. But at the same time....abnormal does exsist in the spectrum. The hard part is learning when to stop calling it abnormal and switch to calling it normal. I think that line should be 'can they function enough to live'.
  
  Hope my post made some sense. In my mind its all clear, but getting it out so that others can understand what I'm thinking is harder.
  
  Hugs,
  Marti

• 
• by
  • micO
  on Jun. 11, 2007 at 2:57 PM
• I understand what you're saying, Marti, but what you're explaining is exactly what I said- normal compared to...
  Tami's behavior wasn't normal compared to what NT people consider to be the norm, which is- being functional, wanting to live and not having self-destructional behavior- right?
  When you compare it to the NT world, kids with these severe behavior patterns, as you said, are seen as not normal and it may be ok to say it like that, but you have to say that it is in comparison to other NT kids or to NT criteria.
  
  Because if you compare these behavior patterns to other kids who are in the same place as Tami- same level of functioning- then she was totally normal with a normal behavior. Do you see my point?
  
  The word itself is relative. you need to continue the sentence and compare it to something else in order to use this word or else I don't think anyone should use the word.
  
  I totally know what you mean, it's not that I don't understand- T's behavior could be views as "not normal"very easily- he has been cycling in and out of deep depression for years now, having suicidal ideations and behavior accordingly, has been very violent in meltdowns for years towards others and towards himself- If you compare him to other NT kids his age I'd say he's not normal in a sec, but if you compare him to other Aspies with Bipolar(then add his other conditions) his age, he's exactly like them- totally normal for the combination of these conditions.
  
  I hope I am making myself clearer. just like you- It makes all the sense in my head and seems easier to understand when it's in my head than when it comes out in writing.
  
  Michal

• 
• by
  • storkdok
  on Jun. 11, 2007 at 7:14 PM
• Michal,
  
  Isn't that why the autistic community uses the term "neurotypical" "neurotypically developing" and not "normal"?  I read the same post, and saw what was said.  My hackles went up, I felt, who are you calling abnormal?  My son doesn't take 3 steps forward, one step back.  He keeps plugging away, the Little Engine that Could, slowly but surely going up that hill.  It may take him longer to do certain things, but he'll get there. 
  
  And my husband says I blow things out of proportion too.  Are they talking to each other behind our backs?  I say, I have a right to my feelings, and so do you.  They are valid, and I felt it too.
  
  Karen:)
  

• 
• by
  • micO
  on Jun. 12, 2007 at 7:07 AM
• 
  

  Quoting storkdok:
  
  Michal,
  
  Isn't that why the autistic community uses the term "neurotypical" "neurotypically developing" and not "normal"?  I read the same post, and saw what was said.  My hackles went up, I felt, who are you calling abnormal?  My son doesn't take 3 steps forward, one step back.  He keeps plugging away, the Little Engine that Could, slowly but surely going up that hill.  It may take him longer to do certain things, but he'll get there. 
  
  And my husband says I blow things out of proportion too.  Are they talking to each other behind our backs?  I say, I have a right to my feelings, and so do you.  They are valid, and I felt it too.
  
  Karen:)
  

  
  Thank you Karen :-)
  
  And yes, sometimes I think that they do talk to each other behind our backs.
  I mentioned it to my husband and he started laughing too.
  
  Michal

• 
• by
  • tamsmom
  on Jun. 12, 2007 at 11:41 AM

• I had to think about this one a bit mic. I think I see where your coming from...and if we can all do that, theres no doubt it would make a sweeter world.

• 
• by
  • micO
  on Jun. 12, 2007 at 3:11 PM
• I'm glad you see it now.
  I think our children, as do we- adults on the Spectrum, deserve to feel special and accepted in society instead of rejected. The words not-normal and abnormal  definitely give off vibes of rejection, demeaning feeling and are offensive. The use of gentler words or explanations will be a tremendous help and will change the way the world look at us and accepts us.
  When I say us I mean adults and kids on the Spectrum, I hope that's clear.
  
  starting with teaching you, the kids'parents- one by one if I have to, is the beginning and I take it as a challenge.
  
  We need the world to understand the way we think, feel do things!
  
  Michal

• 
• by
  • tamsmom
  on Jun. 13, 2007 at 6:48 PM
• Hey mic...this post keeps popping back into my head over and over. I think its something thats going to be very important to Tami for me to 'get'.
  
  I've been looking at Tami as normal...normal for the human race................or at least as 'going to be normal' once shes far enough past the spd problems to be able to engage in life more. Normal can be quirky in my book.....not quirky would be not normal so to speak. So rocking and her other stims can be normal...am I making sense? But when I think of it...I hear myself think..."going to be normal". I'm not even sure what I'm thinking on that or what I mean when I think that. I think I mean that she'll be alot like her dad....who I often push to be more like me...and kids don't deal well with parents who don't get them. I know that from my own childhood.
  
  So ok...I'm thinking while I type so bare with me if it gets garbled! So how do I get her? What are the differences your talking about? Not behaviorially...behaviorial is easy for me to see, understand and accept. Emotionally...well...I really do think Tami is totally the same as anyone emotionally...that distance she asks for alot is self protection from sensory assault. I see her love easily. But thinking differently is harder...I feel like i have to be able to think at least a little like her for her to have the same kinda childhood my other kids enjoyed. That close bond where moms always someone she can turn to for understanding, even when Kimi doesn't understand herself. Am I making sense? So that she can turn to me for good advice for her I guess is what I mean.
  
  I see Tami thinks differently, she learns differently. I can't define what the difference is yet though. Thinking in pictures doesn't tell me much. I think in pictures...I've always been visually inclined. I can look at an object and have it trigger almost like a video tape in my head. My memories are like watching silent movies. Thinking is more a mix of emtional reactions an imagery rather then a well if this then that process. Putting my thoughts into words takes effort (probably why I think as I write, heh). But I can learn verbally as well, I just learn better and easier visually. When I read "think in pictures"...I don't get what they're saying. That seems very normal to me. So what are the thinking differences you feel between you and nts?
  
  And if I'm asking too much...just say so!
  
  Marti

• 
• by
  • micO
  on Jun. 14, 2007 at 7:28 AM
• Marti,
  
  It's not easy to answer your question because at different times in my life my way of thinking has changed due to "making new connections" in my brain, that weren't there before. I'll start by explaining the way I was as a child because I think that applies more to you, now that Tami is so young:
  * I had no sense of humor. Not at all and I didn't understand any jokes, not even a little bit like other kids- so I cried from any remark made to me or at me even if it was made jokingly or being silly etc. My way of thought about it was- "They  (everyone) wanted to insult me!- They don't like me! "
  I was a very lonely child as a result because no one, and I mean- NO ONE liked a cry baby. It was annoying to kids and adults as one.
  * I didn't know how to initiate conversations or ask kids to include me in their games the way I should have, so I'd approach the kids in my neighborhood, who always played in group and announce that from now on I make the rules of the game and they are to follow my rules or else!
  It wasn't taken well by them- that's an understatement as my bruises could show a few moments later.
  * I had no sense of hirarchy- I thought I was on the same level as my mother, my teacher, the principal and so on- whatever they were allowed should have been allowed to me and I could never understood the "double standard" where they were allowed to do a certain thing and I wasn't. LOL
  * I had  no cenocept of OTHER people around me and their feelings. It was ALL about ME and ME and ME! for years and years. There was no empathy in me, I couldn't understand that others had feelings too and that I hurt them often, that I should have thought about those feelings and tried to spare them etc. The world simply surrounded ME, I couldn't see beyond that.
  * I couldn't make any connection between facial expressions and feelings or body language and feelings AT ALL. I still sometimes have trouble with it in conversations- can't tell when the other side is bored, anxious, angry and so on.
  * The way I think in general is in pictures, now you say you think in silent movie picture- I think in video and life motion picture. What do I mean by that?
  It is like this: If I chat on the phone with you and you tell me a story about an accident for example. Tomorrow I might tell this story to my husband and see the accident in my head as if I was there- live in picture, sound, feelings, sounds, smells...everything. My mind completes it all according to what you have told me. I have a hard time distinguishing between things I have heard about and things I have experienced myself and it takes time and experience to KNOW which one it was.
  Memoried- I can go back in time and be back in a certain time in my life- with picture, sound, smell, feelings as if I re-live that moment again. I can even change the angle of the picture as if I am a visiotor standing there and moving around the characters there- my mind completes the picture. It's amazing at times, scary at others.
  It helps me with my art, but when flashbacks of my not-so good memories float back whenever they want into my mind...it's more than scary- it's unbearable, because I re-live it all with all of my senses very vividly.
  
  It's not just memory, it's everything- every word is stored in picture and video, every conversation, everything I see, do...everything. My mind is like a video store with shelves to which I have access and I can take out a video whenever I want and re-live that moment over and over, rewind or go forward each time to see moments of my life. That's how I can remember what people wore at my 1st birthday party :-)
  
  The difference between me and other NTs- I can not think in a a more abstract way and it take a lot of energy at times (because of the feelings and sensory overload involved).
  
  Another difference- ever since I was 3yo I was busy thinking about what we as people are doing here on earth, what is our purpose in life, the meaning of life, thinking about death and if there's life after death (I was exposed to death since I was born because My father was killed at war and I knew that Always, plus I grew up in a country where people were killed everyday).
  I was also busy with questions about my own identity- where did I come from- not physically but more than that- my identity, since I didn't know my father. WHo he was, what did I get from him as far as genes and so on.
  I was obsessed with this for years (from age 4 to 15 actually).
  
  Obsessions are a very big part of an Aspie's life! another difference in thought - NT's have passions but our passions turn into obsessions much of the time. They do change over time (well, some do, some stay), but still... they are a thing of comfort like stimming.
  I had quite a few of those over the years- my father is one of my biggest ones, animals (dogs in particular), I had all kinds of card collections I was obsessed about as a kid, music as a pre-teen and a teen and so on.
  There's a lot I could talk about but I think I wrote enough for now- I think our behavior is part of our differences, the way we think is connected to the way we behave- it's all different even our emotions, that you think is the same- aren't totally the same- our feelings are more extreme than NTs do. My depression is more extreme, my happiness is more extreme- that is why when I was depressed as a teenager I was in a very very dark pit  and when I am happy, it's un-describable - way higher than your NT's regular happiness.
  Everything is more extreme.
  The changes between the emotions is very visible and extreme as well- sometimes I scare people, but it's not just me- I know other Aspies that are like that as well...others who don't ahve mixtures of conditions like I do (that can affect the moods and mood changes)
  
  Michal
  

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