“Special Needs” – what the heck is so special??

JLbgWell…..first let me say that I am honored you are reading my blog.  Thank you.   Second let me say that some of my posts may be funny, some may be every-day, some may be intense.  But they will all be real.  Let me tell you a little bit about me.  Not  too much because if you want to know more you can access my “about” page (it will be up-to-date soon, I promise).  I am a mom.  I love being a mom.  My son is amazing.  The absolute light of my life.  And my son has a rare genetic syndrome which poses/will continue to pose a threat to a “normal way of life”.  But I challenge you…..what is “normal”?  Is there really a “normal”?  My “normal” may be quite different from your “normal” simply because of the way we live our lives.  Which brings me to my next, and most sensitive point.  I am technically a mom of a child with “special needs”.  But I HATE the term “special needs”.  Why exactly is this term considered “nicer” or “more kind” or “more sensitive”?  Aren’t everyone’s needs special?  Especially when it comes to children.  To me, children’s needs seem specifically special.  They need lots of attention, lots of care, lots of love, lots of teaching.  My son is no different just because he has a syndrome.  He needs attention.  He needs care.  He needs love.  And he needs to learn from us.  His father and I adapt our parenting techniques to be specially formulated to our son’s needs.  Don’t you?  So why should I allow “special needs” to define me as a mother?  Who my son is as a little boy?  Who we are as a family?   I would much prefer to be defined by my inventive mothering.  I’d much prefer my son be defined by his incredible zest for life.  I’d much prefer our family be defined by the love we share openly for each other.  Is it fear of the unknown that makes us so different from everyone else?  Is it the fear of the misunderstood?  Is the overwhelming need everyone seems to have for labels and definitions stemming from their own need to be recognized for what defines them?  Regardless, let me tell you one thing from my personal experience right now…..as I said before, my son is technically considered “special needs”… by the majority, by the masses.  But my son will make you smile when your day couldn’t get any worse.  He’ll make you realize that life is SO worth it, so beautiful, so phenomenal.  He’ll make you laugh just when you thought you had no laugh left in you.  He has a joy that I’ve never seen before, a smile that is beyond genuine and a giggle that will make you melt.  Does he have “special needs”?  ABOS-F-ING-LUTLEY!!  But is my main goal in life to make sure all of those needs are met, surpassed and demolished…..YOU-FREAKING-BETCHA!!!  And do I vow to never  let him be defined by some term that was made to be “sensitive”, “kind” or “PC”?  Seriously?  Do you really have to ask??  Special and needs is no longer in my vocabulary!!!

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Thanks for reading my first blog and I hope you’ll stay tuned for the many coming attractions of my amazing son’s journey through life (and my crazy adventures trying to keep up with him!).

19 thoughts on ““Special Needs” – what the heck is so special??

  1. This is a great idea! I love your first post and couldn’t agree more with your sentiments about “special needs.” I look forward to your future posts!

  2. Let me be the first to comment on your blog. I love it. Even though I am no authority on writing, I enjoyed reading and will continue to read. Love you guys!

  3. Samantha, Samantha, Samantha, — how fantastically clear, motivating, educational, awakening, motheringly etc etc you have put into words we can all understand/appreciate. We immediately know that you are beginning with your blog, and so importantly your (and John also of course)evaluation of your family life, now and in years to come, I can use the word “special’ which is appropriate for me, I am a great grandfather to this smiley youngster. And a proud one too.!!!

  4. Samantha, Samantha, Samantha, — how fantastically clear, motivating, educational, awakening, motheringly etc etc you have put into words we can all understand/appreciate. We immediately know that you are beginning with your blog, and so importantly your (and John also of course)evaluation of your family life, now and in years to come, I can use the word “special’ which is appropriate for me, I am a great grandfather to this smiley youngster. And a proud one too.!!! And I know that little angel on my shoulder is nudging me very hard with her approval also. Grandpa

    • Grandpa, Grandpa, Grandpa….I believe she’s on my shoulder too, every day, every moment but most especially when I need that little extra nudge to keep going, to buck up, to change my attitude :). Love you so much!!

  5. I’ve thought about that before, and the Universe or ‘God’ has parts that make the whole beautiful in it’s intricacies and dimensions that we don’t comprehend, but somehow each person with what is special about them in their differences, gives a needed element to make it all work in harmony.

    • I’ve heard the “we’re all special and unique” theme before, and to be honest I’m not completely impressed by it. I’ll only be impressed by it when we find a place for our uniquenesses. Then I can be reassured that our uniquenesses are truly critical by being part of some intricate working machine! Moreover, I’d be really interested in the explanation of what this machine is, and I think I’ve found it. It IS comprehendible!!!!! I think I’ve found my new “holy” book.

      This personality theory derives from history and is backed up by neurology (something that I’m 99.9% sure is unique to this personality theory), and demonstrates how the brain is unique as a machine, with seven components (and there’s a good, neurology-related reason for this number). According to this theory, maturity is to become an emissary of our personality style in full, and as it connects to other styles, such as the Mercy (which is the first to develop in a newborn), and the Teacher (the hardcore emotional intellectual whose emotion is sorely underrated, but so very critical to North American society).

      NB some personality styles simply aren’t meant to get along with each other when being themselves (this is not to say that they can’t get along decently). This is the hardest truth for almost everyone to face. But think about this: the circuit board in your computer was not made by connecting everything directly to everything else. In order to become happy as our individual selves, we need certain personality styles to be with us and others to be absent. Moreover, not just one, but both kinds of emotions would be positive: we can feel the whole working progressively while still feeling like an individual. As it is now, only one of these kinds of emotions tends towards positivity. The other tends to be neutral, even negative!

  6. Samantha and John.
    I haven’t had the privilege to get to know this young man in person. I held him when he was a baby, seen the light from his smile. But I haven’t been around him to know him. I look at the pictures that are posted and smiles in-turn makes me smile. Wow!! You are special parents, to have such a loving child as he is. You can post as much as you want on my FB page, I would love to keep seeing the Pic’s and the posts of what he’s learned all he has accomplished.

    Thank you for the honor of introducing your son to me and letting me get to know him through your posts.

    Judy.

  7. Thanks for sharing this wonderful gift of yours( ours) and I look forward to more of life with Jaymin!

  8. Samantha – I don’t know you, nor your son’s condition, but the title of your blog post drew me in. I found your words and outlook refreshing. You said things that at all parents can relate to. Keep it up, girl — I’ll be following you.

    • Thank you so much for reading Janel. I am honored to have you “aboard”. I started this blog so I could have an outlet to be real about my thoughts, my feelings, my frustrations, my joys about motherhood and especially about mothering my specifically amazing child. But I’m also very focused on the positivity that comes out of all of this, all of life. It is so easy to sit back and feel sorry for yourself for any number of reasons, but that is so counter-productive and does nothing but fuel more negativity. So I simply won’t do it!! I am so happy that my title drew you in and that you’ve enjoyed what you’ve read so far. There is much more to come!!

  9. Allow me to give you a perspective of my own as someone who has a history of struggling with a mental disorder, my dear cousin…

    While “special needs” are occasionally wonderful (certain accomodations in school for instance), I have to agree, it’s kinda ostracizing when used excessively. The problem is that people tend to polarize and stereotype people too much, forgetting that this is the 21st century, and the generation of respect and EQUITY! Not to mention, people’s definition of “normal” is usually too narrow.

    Of course at the same time I don’t appreciate the over-sanitized language, such as “mentally challenged.” Let’s face it; we’re all “mentally challenged.” I’d much rather be called disabled as long as it’s not used in a negative or denigrating context. Why? First, it celebrates my uniqueness. Second, it’s more accurate. Third, I learned in a equity class in high school that it can even be used as an identifier if necesssary (believe it or not, this is not meant to be used in a negative or derogatory sense).

    One of the worst things that happened to me was social skills classes. It felt sooo unnatural, trying to learn from examples instead of actual off-the-cuff experience. In addition, these very same social skills classes taught the rule of not interrupting. Combined with the stodgy nature of these classes, I was driven all too strongly to believe it. The ultimate effect? I had felt unable to speak up! I would be in the middle of speaking when someone suddenly interrupted, and then I had felt stifled. I suppose the moral of this story is think twice and hard before taking your kid to social skills classes (if they’re even necessary…I’m not sure Jaymin will need them). I could tell you more, but it would get fairly technical.

    Moving on, my disability was actually stronger than it used to be now, and I was taken out of the classroom in elementary school multiple times for behavior that I didn’t understand (NB I seemed to have lacked a sense of appropriateness, but this was too extreme)! Other times it was due to some special testing or something of the like (and that’s when I had felt that I’d missed out on something important in the classroom). Either way, it had felt like I had lost a social life (and again it may have been due a lack of a sense of appropriateness). Thus, I became the non-social (almost anti-social!), highly introverted intellectual that I am today. How ever, then, did I overcome it? I somehow managed to retrain my brain, and open up myself to new perspectives and ways of thinking. No one but myself could ever do such a thing — something to think about when you’re trying to think about how to retrain Jaymin’s brain when he gets older.

    As I study personality styles (features a test for you and John to try out), I then learn that my cognitive style is naturally at least a little introverted, but more than that indirectly thrives off an entirely different emotion, one that sees good and bad in the highly objective intellectual realm. Very, very, very few people in this country understand that kind of emotion and this is another reason for my non-social introversion (and also my not-speaking-up, as this personality style HATES interruption). You might not understand it yourself, my dear cousin.

    But rest assured, that my personality style is meant to get along quite well with yours, as well as that of my other cousins, and also my sister. As Jaymin gets older you will find out by observation what his personality style is, and to what degree it is compatible or conflicting with yours.

    Looking forward to reading some of the posts here! It’s truly tremendous stuff!! :D

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