Friday, March 29, 2013

Special Needs Spotlight: Zayn


 


Hi friends, we're the Azimis--Mohammad, Anna, and Zayn.  Mohammad and I met on our first day of college at Arizona State, and were married exactly one week after we graduated.  Shortly after we moved to Berkeley, California to attend graduate school, and a few years after that we added Zayn to the mix.  At birth Zayn was diagnosed with Achondroplasia--the most common form of dwarfism.  (You can read some common facts here.)  The most obvious features are a large head, short limbs, and stunted growth--usually no taller than 4' 4''.  Dwarfs have normal mental capacity, normal life expectancy, and lead pretty typical lives free of most interventions.  We're excited Miggy invited us here today to share our story with you.  We think Zayn's the coolest dude around, and we hope you'll think so too! 

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Miggy:  Can you take me back to the day you found out Zayn was going to have dwarfism?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now? 

Anna:  Zayn's diagnosis was a complete shock to us.  About an hour after birth we were told that Zayn showed signs of dwarfism.  We would not officially know for a few days after that, and I held on to the hope that Zayn was "normal" for quite some time.  For as long as I can remember I had my perfect life planned out--graduate, marry, have babies.  Babies without disabilities.  Babies without dwarfism.  Zayn's diagnosis numbed me.   I could not understand how this could have happened to me.  I was angry, I was sad, and I was scared.  And I felt guilty for even having these emotions to begin with.  But with time I soon realized my perfect life was still there--hidden in Zayn's beautiful long eyelashes, hidden in the cutest chubby hands I've ever seen, and hidden in the the sweet newborn smell that only a perfect baby could produce.  My perfect life was staring right at me all along, it just took me some time to see it. 

Today, 17 months later, and Zayn's diagnosis rarely bothers me.  I still think about it every single day, but not in a way that I once did - I don't feel sorry for myself.  I love Zayn more than I could have ever imagined and the only thing that saddens me now is remembering back to the first few months of Zayn's life.  What should have been one of the happiest times of my life will always be remembered with such deep sadness and pain.  I know I needed that time to grieve, but I wish I could have told myself then that everything was going to be just fine--maybe even better.  


Miggy:  Explain how Zayn's dwarfism affects your day-to-day life?  (Or does it?  Not all special needs have a huge impact day-to-day.)                                                         

Anna:  We're really lucky that Zayn's dwarfism hasn't affected our day-to-day life too much.  There's an array of complications that come with dwarfism--sleep apnea, kyphosis, leg bowing, and spinal compression to name a few.  Of course Zayn would have to pick the most traumatic of these for his parents to endure.  At 6-months Zayn went in for foramen magnum decompression surgery--a surgery done to relieve pressure at the base of the skull, but luckily came out just fine.  Since then, Zayn's had a clean bill of health, and we hope we're just as lucky as he grows older.  Apart from medical complications, children with dwarfism tend to develop slower than their average-height peers.  They lack muscle tone which means it takes them longer than normal to hold up their heads, sit, stand, and walk.  Zayn just learned to sit and it's opened up a whole new world to us - we can put him in a shopping cart, give him a real bath (although he still fits in the sink!), and feed him in a high chair with ease.  It was a bit frustrating at first--watching other babies develop so quickly compared to Zayn--but on the bright side, we had a "baby" to cuddle for much longer.


Miggy:  What are the biggest worries you face for Zayn?    

Anna:  I think as parents we all want the same for our children--we want them to be happy.  I don't think it matters if you have a special needs child or not, you still worry whether your child will have friends, will they be accepted by society, will they be made fun of for being different.  I worry for Zayn's first day of school, I worry for the first time he realizes he's different, and I worry that he will be thought incapable of things simply because he is short.  My worries are countless, but I can only hope that the world will accept him just as we see him--as an energetic toddler, one day a curious boy, and (hopefully not any time soon) a successful man.   


Miggy:  After my daughter was born I became very aware of stories involving people with limb differences or even little jokes in movies or media about people missing limbs or something that I suddenly saw in a new light.  Dwarfism in particular seems to be something that the media pokes fun at a lot, especially when I think of the term "midget."  Can you talk a little about this from your perspective?  Is this offensive to you?  What do you wish other people knew or understood about dwarfism?  What can we do to address and correct this issue?

Anna:  This is such a touchy subject within the dwarfism community so I need to preface this by saying that this is my perspective.  I don't speak for the community as a whole, and I speak as a parent of a child with dwarfism, not as an individual with dwarfism myself.  I don't know what it was, but within the first month of Zayn's birth I heard the word "midget" everywhere.  It popped up on my Facebook feed, my Instagram feed, and even in the news.  Maybe I was just more sensitive to it, or maybe it was just coincidence, but I can assure you that I did not take it lightly.  I could not understand how the world could be so cruel to my child, and this one word would upset me for days.  Days.  And then one day my husband asked why it bothered me so much?  Although I regret it, I'm pretty sure I've used the term before, and I'm almost certain I meant no harm.  And I realized then that most people don't mean harm, they're just ignorant.  And those that do mean harm, well, they do a lot more that offends me than by just using the word "midget".  Which is why I've trained myself to hear this word as any other word - not a negative word, not a positive word, just a word.  And when I hear it I can choose to kindly educate the person using it, because it is a very offensive word to many, or I can choose to ignore it and be on with my day, because frankly there's not enough time in my day to fret over name-calling. 

But this is my perspective today.  This could very well change the first time Zayn comes home from school and tells me that a friend called him a "midget" on the playground.  There's no preventing it, my son will be called a "midget."  Probably not just a handful of times, probably more than I'd like to imagine, but I hope he will learn to hear this word as I have.  A word.  And to remember that people's words speak more of them, than they do of ourselves.  

What is the correct term?  This is still hard for me.  Most people say "little people" but I always find I have to explain myself further when I say - "Zayn's a little person." because aren't all babies "little people?"  So I tend to say dwarf.  Zayn is a dwarf.  It took me a long time to become comfortable with this statement, but I find that it's the most descriptive.  There isn't really anything I have to explain.  It's just the fact.  Zayn's a dwarf and he's just short, that's all.    



Miggy:  Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?  

Anna:  Since Zayn is still so young, it's hard to tell that he has dwarfism.  But the one comment we get ALL THE TIME--"Wow!  He's so big.  He's going to be such a big boy!"  It's funny because Zayn has a huge head so people automatically assume the rest of him his huge too.  At first these comments would cause a twinge of pain in my heart because I knew that Zayn would never be "big" but now Mohammad and I just look at each other and laugh, because if they only knew...  


Miggy:  How can people best approach or respond Zayn? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
  
Anna:  Ask!  Please, just ask.  Zayn's at an age where other parents are beginning to see that he's not as developed as their children.  At 17 months he can't walk, he doesn't crawl like an average-height baby, and he has just learned to sit so he's still a bit wobbly.  It's obvious he's different, but I'd rather you be politically incorrect than ignore us.  Dwarfs aren't scary.  Promise.  


Miggy:  What is the biggest lesson you’ve learned since becoming a special needs mom?
   
Anna:  This is a hard questions because I feel like I've learned so much.  Zayn's taught me more in his short life than I ever thought possible.  I've learned what it means to be "perfect" and "normal" and "average."  I've learned not to assume that someone's life is easy by just looking at them as they peacefully walk their "perfect" children down the street.  I've learned that we all have trials.  You may not have a child with dwarfism, you may not have a child with a special need, but I guarantee you that you have had trials in your life.  So I've learned to never assume, to never judge, and to never base my opinion on someone from just one encounter.  I've learned to be kind, to be patient, to be accepting of everyone, and most importantly to teach my children these values as well.  To engrain in their malleable minds that it's okay to be different, to be unique, to have something no one else has - because it is this that makes the world beautiful.  

Thanks for reading our story!  We hope you learned something new today about dwarfism.  You can follow our family blog here--The Azimis--to keep up with our everyday happenings.  Don't come looking for anything out of the ordinary, because you'll probably just find that our family is not too much different than yours.  :)  

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Anna--thank you so much, that was so great!  Also, I should probably tell you I'm in love with Zayn.  He is the cutest!  I have to say I really related to so much of what you had to say.  Like the fact that you still had your perfect life all along (yay!) or that you worry a little extra about the first day of school and how he'll be treated for his differences.  I really loved what you said about not judging others--it's so, so true--we all have trials.  And especially teaching our children that it's OK to be different, unique and to have something no one else has.  Thanks again Anna.  You have a beautiful family.  

If you or someone you know would like to participate in the special needs spotlight please email me, or have them email me directly, at thislittlemiggy at gmail dot com!  

Have a great weekend!  

19 comments:

  1. Hi Miggy, I have been reading your blog for the past year and I want to tell you how much I love and enjoy it. Your family is beautiful and I especially love your honesty. I really enjoyed todays post because Zayn is our grandson and he has brought our family so much joy. Thank you Anna and Mohammad for sharing your beautiful story of Zayn. Grammy Beth

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    1. Well Thanks Grammy Beth! So wonderful to hear from you both as a reader and as Zayn's grandma. How wonderful! Hugs to you and your sweet family.

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  2. SO GOOD! I love this one. And I LOVE the Cal picture... Go Bears!

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  3. He is adorable. I enjoy this series. I have a child with disabilities that you can't see. Sometimes I think that is harder.When he was younger people said the meanest things. These children have to overcome so much but it makes them so strong.

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    1. Debby--Ugh... I can't think too much about all the 'what if's' down the road for my kids...I know it can be tough. Luckily I think we live in a day and age where bullying is being brought to the forefront, and differences of all kinds are finding acceptance. I hope this continues, but regardless I know difficult days lie ahead. But it will make them stronger, and hopefully more compassionate and kind.

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  4. Anonymous3:47 PM

    Anna - I love your honesty and sincerity. Your heart - and love for Zayn - shines through!!! Evonne

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  5. Loved your story, Anna! Perfect Baby Zayn has brought out the perfect parents in you :) Bravo to your honesty and heart!

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  6. thanks for inviting me here today, miggy. it was a honor being a guest on your blog. :)

    looking forward to many more spotlights, and of course posts of your two cute girls too!

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    1. Anna,

      Well, you're welcome. But I feel more gratitude and thankful to you for being here and sharing your story. The spotlight is possible because of all the great people willing to share their stories and talk about the joys and heartaches, ups and downs... It's wonderful and beautiful and I'm glad to help facilitate all this goodness in some small way. Much love to you and your family!

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  7. Loved this! Zayn is a cutie! My sister is a dwarf (achondroplasia). When I was 21 and my sister was 19, my parents decided to adopted child with dwarfism. My sister Olivia came home to us when she was 4 years old.

    My sister that is just younger than me has a 17 month old daughter with achondroplasia (she also has a average sized son too!). Her husband is also a LP. I grew up in an amazing family. Anna will you be at the National Conference? Maybe we'll see you there.

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    1. that's so neat your parents adopted a baby with dwarfism - we actually hope to adopt a child with dwarfism one day, too.

      we won't be at the national conference this year - we're waiting to go until zayn is a little bit older and can actually interact with other children. we're excited though - we love our LP chapter here, and are looking forward to the national conference one day! i hear it is pretty awesome. maybe we'll meet one day! :)

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    2. Yay for connections! I love it. :)

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  8. Love this, Miggy. xo
    And goodness, Zayn is beautiful.

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    1. XO right back atcha.

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  9. Anonymous1:22 PM

    What a cutie!

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  10. Love this post and all the wonderful insights!

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  11. Great post!
    Anna you said so many things I myself feel but wasn't able to get into words :) And I especially love your perspective on the "m word"!
    Beautiful words and beautiful family!

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  12. Anonymous9:32 PM

    Anna,

    Zayn is a beautiful boy! And he's VERY lucky to have you and Mohammad as his parents, his gift from God. And as your gift from God, Zayn will no doubt bring you throughout his life, a richness in your spirits that you never imagined possible. Thank you for sharing your thoughts from a Mother's heart.

    Love to each of you, Great Aunt Clydene, Great Uncle Ray & Raydene

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  13. I love this one! My daughter has a different kind of dwarfism and I've been meaning to email you for ages about the special needs spotlight but am too lazy or something ;) Was so excited to "meet" Zayn - my favourite spotlight so far :)

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