I read an article today from the Huffington Post and felt compelled to share it. It is written by Maria Lin, who is raising a special needs child. Her candid account of what life is really like for the parents of these children was spot on. Here's what she has to say:


About 6 million kids in America receive special education, according to the U.S. Department of Education. One out of every 10 children under the age of 14 has some type of special need, which includes any physical, cognitive, or medical disability, or chronic or life-threatening illness.

My 3-year-old son Jacob is one of them. 

He has a disorder of the 18th Chromosome. The 18th Chromosome has various
named disorders, including Ring 18 and the more well-known Trisomy 18 (which
affects Rick Santorum's daughter, Bella). My son has the more rare 18q-. Only 1
in 40,000 Americans have Chromosome 18q-, which means that less than 7,800
Americans are affected by this disorder. 


Because of this disorder, Jacob has had serious medical and developmental
issues. He has had heart surgery, kidney tract surgery, bronchoscopies and
endoscopies, slept with an oxygen tube, and has had dozens of medical tests and
sees numerous specialists. We've been in and out of hospitals and doctors'
offices since he was three months old. He also has severe developmental delays
and receives speech therapy, occupational therapy, physical therapy and
behavioral therapy. 

Raising a child with any disorder, condition or special need, is both a
blessing and a challenge. A challenge for the obvious reasons, and a blessing
because you don't know the depths of victory and joy until you see your child
overcoming some of those challenges (sometimes while smiling like a goofy bear). 

Chances are that you know a special needs parent, or you may be one yourself.
As a special needs parent, I often don't share my feelings on this aspect of my
life, even with my closest friends, so I decided to compile a list here with the
goal of building understanding (I was largely inspired by this beautiful post,
authored by another parent to a child with a chromosomal disorder). I don't
claim to speak for every special needs parent out there, but from the ones I
know, some of these are pretty universal. If I've missed any, please leave a
comment below.


1. I am tired. Parenting is already an exhausting endeavor.
But parenting a special needs child takes things to another level of fatigue.
Even if I've gotten a good night's sleep, or have had some time off, there is a
level of emotional and physical tiredness that is always there, that simply
comes from the weight of tending to those needs. Hospital and doctors' visits
are not just a few times a year, they may be a few times a month. Therapies may
be daily. Paperwork and bills stack up, spare time is spent researching new
treatments, positioning him to sit a certain way, advocating for him in the
medical and educational system. This is not to mention the emotional toll of
raising a special needs child, since the peaks and valleys seem so much more
extreme for us. I am always appreciative of any amount of grace or help from
friends to make my life easier, no matter how small, from arranging plans around
my schedule and location, to watching my son while I am eating.


2. I am jealous. It's a hard one for me to come out and say,
but it's true. When I see a 1-year-old baby do what my son can't at 4 years-old
(like walk), I feel a pang of jealousy. It hurts when I see my son struggling so
hard to learn to do something that comes naturally to a typical kid, like
chewing or pointing. It can be hard to hear about the accomplishments of my
friend's kids. Sometimes, I just mourn inside for Jacob, "It's not fair."
Weirdly enough, I can even feel jealous of other special needs kids who seem to
have an easier time than Jacob, or who have certain disorders like Downs, or
autism, which are more mainstream and understood by the public, and seem to
offer more support and resources than Jacob's rare condition. It sounds petty,
and it doesn't diminish all my joy and pride in my son's accomplishments. But
often it's very hard for me to be around typical kids with him. Which leads me
to the next point...


3. I feel alone. It's lonely parenting a special needs
child. I can feel like an outsider around moms of typical kids. While I want to
be happy for them, I feel terrible hearing them brag about how their 2-year-old
has 100 words, or already knows their ABCs (or hey, even poops in the potty).
Good for them, but it's so not what my world looks like (check out Shut Up About Your Perfect
Kid). It's been a sanity saver to connect with other special
needs moms, with whom it's not uncomfortable or shocking to swap stories about
medications, feeding tubes, communication devices and therapies. Even within
this community, though, there is such variation in how every child is affected.
Only I understand Jacob's unique makeup and challenges. With this honor of
caring for him comes the solitude of the role. I often feel really lonely in
raising him.


4. I wish you would stop saying, "retarded," "short bus," "as long as
it's healthy... " I know people usually don't mean to be rude by these
comments, and I probably made them myself before Jacob. But now whenever I hear
them, I feel a pang of hurt. Please stop saying these things. It's disrespectful
and hurtful to those who love and raise the kids you're mocking (not to mention
the kids themselves). As for the last comment, "as long as it's healthy," I hear
a lot of pregnant women say this. Don't get me wrong, I understand and share
their wishes for healthy babies in every birth, but it's become such a
thoughtless mantra during pregnancy that it can feel like a wish against what my
son is. "And what if it's not healthy?" I want to ask. (My response: you will be
OK. You and your child will still have a great, great life.)


5. I am human. I have been challenged and pushed beyond my
limits in raising my son. I've grown tremendously as a person, and developed a
soft heart and empathy for others in a way I never would have without him. But
I'm just like the next mom in some ways. Sometimes I get cranky, my son
irritates me, and sometimes I just want to flee to the spa or go shopping (and,
um, I often do). I still have dreams and aspirations of my own. I travel, dance,
am working on a novel, love good food, talk about dating. I watch Mad
Men, and like a good cashmere sweater. Sometimes it's nice to escape and
talk about all these other things. And if it seems that the rest of my life is
all I talk about sometimes, it's because it can be hard to talk about my son.
Which leads me to the final point...


6. I want to talk about my son/It's hard to talk about about
son. My son is the most awe-inspiring thing to happen to my life. Some
days I want to shout from the top of the Empire State Building how funny and
cute he is, or how he accomplished something in school (he was recently voted
class president!). Sometimes, when I'm having a rough day, or have been made
aware of yet another health or developmental issue, I might not say much. I
don't often share with others, even close friends and family, the depths of what
I go through when it comes to Jacob. But it doesn't mean that I don't want to
learn how to share our life with others. One thing I always appreciate is
whenever people ask me a more specific question about my son, like "How did
Jacob like the zoo?" or "How's Jacob's sign language coming along?" rather than
a more generalized "How's Jacob?" which can make me feel so overwhelmed that I
usually just respond, "Good." Starting with the small things gives me a chance
to start sharing. And if I'm not sharing, don't think that there isn't a lot
going on underneath, or that I don't want to.


Raising a special needs child has changed my life. I was raised in a family
that valued performance and perfection above all else, and unconsciously I'd
come to judge myself and others through this lens. Nothing breaks this lens more
than having a sweet, innocent child who is born with impairments that make
ordinary living and ordinary "performance" difficult or even impossible.


It has helped me understand that true love is meeting someone (child or
adult, special needs or not) exactly where he or she is -- no matter how they
stack up against what "should be." Raising a special needs child shatters all
the "should bes" that we idolize and build our lives around, and puts something
else at the core: love and understanding. So maybe that leads me to the last
thing you don't know about a special needs parent... I may have it tough, but in
many ways I feel really blessed.

 
Follow Maria Lin on Twitter: www.twitter.com/marialinnyc     

Here is the link to the article for further reference:
http://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html


 

This past Tuesday I was blown away by my readers. As a special Valentine's Day treat, I had offered a free Kindle download of my book Sometimes The Wind Blows Sideways: Our Lives with a Special Needs Child to everyone who had visited my blog that day. I did not advertise in advance what I was planning so whoever happened to read that day's post found the surprise.  97 people downloaded the book to their Kindle in less than 20 hours.

Never had I envisioned such an overwhelming response.  I know that many more people had visited my site on that day and did not have a device to download the book to, but they still read my blog post for the day. Others mentioned to me that they had shared my information to their support group and passed the word along to their friends. I am very excited that so many have found this book to be helpful.  Here is some of the feedback that I have received:

*All you wrote in the book names so many things. Thanks to you I see life in so many ways, thank You.

*I am finding such strength in your book. I just wanted to say thank you for  contacting me to see if I was
interested I'm submitting , but at point things  were so New . I was still processing and wasn't sure how to share. Just wanted  to say Thank you for Sharing all these Wonderful Parents & Special Children's Stories with The
World.

*Just want to say I have found this to  be inspirational. I can't put it down.

*What encouragement "Sometimes the Wind Blows Sideways" is to mothers of a special needs child. A compilation written my moms who live victoriously when the wind blows against them is just what every mom needs.

Your responses have been wonderful and I hope that for the next title I can get more writers to submit. If anyone wishes to purchase a paperback edition, it can be found at Amazon.Com via the following link.
http://www.amazon.com/Sometimes-Wind-Blows-Sideways-Quonce/dp/1466419180/ref=sr_1_1?ie=UTF8&qid=1329480372&sr=8-1

Or you can visit the River's End Bookstore to pick up a copy.  Tonight I will be there for a reading of a piece of prose that I wrote and if you stop by at 7:00 to listen to all of the readers I will be more than happy to autograph a copy for you.  Refreshments are free and the readings have always proven to be wonderful.  Hope to see you there!

I love the digital age. Not only was I able to revise my print edition to add a bonus story, I was also able to convert my files into a kindle ready book. The title can be digitally downloaded within seconds to your kindle or ipad, which includes free wireless delivery via Amazon Whispernet.

Product Description from Amazon.com:

Raising a child with special needs can be both challenging and rewarding. In this special collection of short stories, families and caregivers share their struggles, laughs, and tears as they celebrate the lives of individuals who
have  triuimphed over unimaginable hurdles.
  
With topics that range from Autism, Down Syndrome, Cystic Fibrosis, Developmental Delays, Brain Tumors, physical impariments and even the death of loved one, this book is a wonderful resource for parents, teachers, friends and neighbors whose lives have been touched by a disability.

To purchase a kindle edition of Sometimes The Wind Blows Sideways: Our Lives with a Special Needs Child, you can click here:
http://www.amazon.com/dp/B00757ISSM

Since I am a member of KDP select, those of you who are a kindle owner AND a member of amazon prime, you can download this book free of charge.

To purchase a paperback of Sometimes The Wind Blows Sideways: Our Lives with a Special Needs Child, you
can click here:
http://www.amazon.com/Sometimes-Wind-Blows-Sideways-Quonce/dp/1466419180/ref=sr_1_1?s=books&ie=UTF8&qid=1328327597&sr=1-1

**Remember that customer reviews are always welcomed on Amazon.Com.

Some just call them habits while others do it to control their out of control lives.  My daughter does it for entertainment, and has done so her entire life.  She loves to have things in just the right place (or her perception of what the right place should be.)

I had to laugh when I saw her bins of cd's lined up in a row like little soilders.  That shopping bag you see there has been in the exact spot since she got it Christmas morning.  That is where she found it and so that is where it must stay. Lord help her in the days that it must be moved so that the vaccumn could slide underneath. 

My daughter loves games.  Even better are games that contain money. Not because she wants to practice her  math skills, but because money can be sorted and strategically placed. Look at how much fun she is having putting them into rows.  Her day just doesn't get any better than this.


While every special needs child holds their own unique charm, it still amazes me to watch her in play.  Actually what drives me nuts is the fact that I can't break the code.  Why do some items go into a certain pile while others go in a completly different one?  So far she hasn't spilled the beans, but I'm hoping one day she will share her secret.

I can't say that I'm a stranger to idiosyncrasies.  Everyone has some level of OCD in them, but children with disabilities seem to display these at a greater level. Do their beautiful minds see things that are not obvious to the laymen eye?  Perhaps their level of thinking is so deep that the typical person cannot even comprehend it. I'm not sure the true reason, but I do know that it brings her pure enjoyment and that's goo
 

I was caught off guard the other day when I received an unexpected but very exciting phone call.  The Oswego Reading Council had awarded me 2nd place in their annual writing contest ! Each year the topic is chosen by the council and everybody in the entire county is eligible to participate. This year's topic was "The person I most admire is...".  Each entry was subjected to two rounds of judging.  Over 600 submissions went to the preliminary round of judging by the Oswego Reading Council board.  The top 10 entries were then given to a group of professional writers authors for the final judging. The award ceremony will be in a few weeks but for those who cannot attend I wanted to share with you.

"The Person I Most Admire"    by Amy Quonce

For years I have seen the subject of the annual writing contest come and go without much thought of it sinking into my mind. Then before me was presented this year’s topic: The Person I Most Admire. I was captivated immediately and without hesitation I had already begun composing drafts within my head. There was no doubt who I admire most in this world…my daughter.

My little girl (who will remain forever young in my eyes) has been overcoming obstacles since before she was even born. The doctor had crushed the excitement of my first sonogram when he sadly announced that my baby was going to be facing serious disabilities, and immediately sent me to see a specialist, who in turn tried to convince me to terminate the pregnancy. Tears streamed down my face as I stared off into space, trying to envision my future daughter’s life. And that’s when it came to me…she did have a future, and it was my job to make sure that she had the best life that I could provide for her. Six months later my beautiful baby was born and she has been the inspiration for my life ever since. Faced with many medical difficulties, she has persevered through it all. Never once has she grumbled about having to go to yet another doctor, or undergo another surgery. She takes it all in stride and has amazed her physicians every time. I will never forget the time that one prominent doctor, who has seen her since she was an infant, came up to me and proudly announced that he tells all of his colleagues about her because he cannot believe how far she has come. He never expected her to walk or talk, and now she has been a dancer for 12 years, and will happily tell anybody all about it who will listen.

My daughter was born with the good natured attitude that I dream of having for my own. In her eyes each person she meets is her best friend, and the world is full of individuals who get along with everyone, despite their differences. It is an innocence so rare that it simply must be cherished. Even after suffering from a personal tragedy, she picked herself up and never let the sparkle go out of her eyes. She possesses a special quality for finding the silver lining in everything, and I can’t help but smile each time I realize that this special child is my own. I have been given a gift so precious, that I often wonder what I did to deserve it.

During her short 14 years of life, she has turned every mountain into a mole hill without ever complaining about the journey that it took her get there. While she may still be facing a life with obstacles stacked against her, I know she will take each step with pride and give all that she can. And I will be standing behind her, awaiting to catch her if she should happen to fall. When this day does arrive, there will still be a smile upon my face because I am so proud of her in all that she has done. I wish that someday I could be more like her.

I would like to thank the Oswego Reading Council for bestowing this honor to me!