What Jay Wants You to Be Aware of this April…

30 Mar

acceptance April is Autism Awareness Month! There was a time when I believed that switching a light bulb to blue was enough. I honestly believed with all my heart that just wearing a shirt was enough. But now I know that while wearing a shirt can definitely start a conversation… it’s not enough. Awareness is a concept, acceptance is an action!

Acceptance is understanding that autistic rights are human rights!

Acceptance is embracing the fact that just because someone may not communicate in the same way we do, does not mean they don’t deserve to be heard.

Acceptance is knowing that this world is big enough for all kinds of different thinking, different ways of doing things, and just well…DIFFERENT in general! Different is what will come up with a cure for cancer one day, different is what will create musical masterpieces, different is what will fix your computers, create the movies you go to see, give you the best hug you ever got and just fill our world with more color and beauty!

So I said before that awareness is a concept and acceptance is an action. Here is the thing I think they do go hand in hand. In order to take action you must first be aware of something that needs to change. See where I am going here? What I am saying is to please go ahead and wear the shirts, pass out puzzle pieces, write blog posts etc… but do so knowing that is only the first step. What will you do once someone comments on the t-shirt, the puzzle piece the blog posts?

For me, I decided that the best way I could celebrate April was to celebrate my boy and do all those accepting things I mentioned before. My thought is that I can talk all day long about what needs to be done, what we SHOULD be doing yadda yadda yadda but I really have no right to do so because while I love my boy with every ounce of my being and would slay a dragon for him…I am not autistic! In order to know what it is that I need to be asking you all to accept, what actions need to be taken; I need to be aware. And that means shutting up and listening to the person whom I know that knows this best… JAY. So I asked him two questions and then I stopped talking and really listened to what he had to say.

Me: Jay it’s almost April and you know what that means, Autism Awareness month. This year I want to ask you a couple of questions and I would then, with your permission , like to share it with the world, or at least my blog. The two questions are… What do you want? and What do you need?

I shut my mouth after that. I did not try to explain them or put ideas into his head, I just let him process those two questions and waited. What he said was so simple yet so deep! He said…

“I WANT to be understood. To have people accept me just the way I am and not make me feel bad for being this way. I NEED help because I don’t think what I WANT will ever happen. I need modifications and people like you to break things down when I need them and to support me and lead me to be the best I can be!”

Then Jay went back to playing on the computer and left me there to process the importance of what he had just said.

Awareness is a concept, Acceptance is an action. This April and then May, June and every other month then after I know what action I will be striving for. I will do what ever I can so that my boy will live in a world where he can believe his WANT can happen because every person deserves to be understood and accepted just the way they are! I think I will repeat that because um… it’s HUGE!

My boy wants you all to be AWARE that he is Autistic and that all he wants is for you to understand him and ACCEPT him just the way he is and to not make him feel bad for being this way!!!

April is Autism Awareness month! If you are reading this, well then you already can check off the awareness part because you are aware of what my boy wants and that he has autism. Now for the acceptance part. Show my boy that you hear him, that you accept him just the way he is by leaving a comment saying you do. Please let him know that he never ever has to feel bad for being who he is!Then spread share this posts so that more people are aware, more people will understand why acceptance and taking action is so important! No one should feel bad for being who they are… NO ONE!!!

 

Welcome to the Club… Don’t Freak Out

27 Mar

Great Article by Washington Post staff writer Mari-Jane Williams appeared 3/27/14
Copy of Article by Washington Post staff writer Mari-Jane Williams

Copy of Article by Washington Post staff writer Mari-Jane Williams

An article appeared in the Washington Post about me and the book today, how cool is that! If you have not read it you can check  out the online version by clicking HERE.  It’s always fun, and a little bit strange to be on the other side of the interview process. I must admit I still feel more comfortable being the one asking questions.

Anyway, I mention it not just because it was a very nice article, but because of it I have gotten a few new folks coming here and visiting! So if you are one of those new people, WELCOME! I invite you to look around and get a feel for who I am. If you don’t have much time and can only check out a few things, then you may want to view THIS which was my most viewed piece ever  and actually crashed the server when I first posted when it got 30,000 views in an hour, which actually made me sad instead of happy because it just proved that unfortunately  many of our club members can relate to it all too well; or you can read THIS which was painful to write but needed to be said and explains how I feel about my son, his autism and organizations that claim to be helping the cause but may be promoting a less than positive picture. You can read it and decide for yourself how you feel about it and the organization but hopefully it will make you think! And of course I don’t always come on here and whine and cry and huff and puff, sometimes I am actually quite funny and amusing don’t believe it, take a look at THIS.

And I also invite you to come over and join the fun on my Facebook community page. I am much better at posting over there and its interactive, filled with thousands of other folks both parents and adults autistics who all GET IT! We also have a Facebook page for the Book where both Neil McNerney and I post articles, and info about upcoming speaking engagements etc. And of course if you ever have any questions you are always free to email at sharon@sharonfuentes.com. I try really hard to answer emails in a timely manner but since you know I am an autism mom too… well you get it!

So welcome to the club my new friends. For those of you who are new to Asperger’s please know you are not alone. I know how scary it is at first. I get it, really I do. But hang in there, before you know it you will realize that you really didn’t have anything to Freak Out about! I promise… it’s not so bad. It’s like diving into a swimming pool: you can keep trying to dip your toe in hoping the water will just magically get warmer, or you can dive right in. Sure it will be a shock at first, but eventually you warm up and are able to enjoy splashing around!

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Reflection Leads us to the truth…

23 Mar

Me and my DADDY!

It has been so long since I blogged here. WAY to long. I could make excuses, lots of them like how busy I have been, which granted I have. I could say I had nothing to blog about, but we all know that is a lie! I could just skip  any explanation to you and just write a post… but somehow that does not seem right. You see it would not just be you I would not be explaining why I have been MIA, but also myself! So instead, I will come clean with a recent discovery as to why I think I have not blogged in so long.

Me and my DADDY!

Me and my DADDY!

I MISS my dad! I have not blogged in so long because I think I  just could not handle not seeing a comment from my daddy. He always used to be my biggest fan, always leaving some funny little comment to make me laugh or letting me know how proud he was of me. I am so grateful for this blog because I have that now, little written pick me ups from my dad, just sitting here in cyber land waiting to be read whenever I need it most. How cool is that? Very cool, I know… YET, some how even though I am appreciative of that, it still does not make up for the fact that I will never get one of those comments from him again. That hurts… a lot! So because I was not ready to deal with that hurt, I just avoided it, pretended this wasn’t important anymore, I did not need it.

But here is the thing, I miss this blog just as much as I miss my daddy! There is something about just being able to lay it all out there; a one-sided conversation with myself and ummm… all you in cyber land too. And while I have done a great job sharing my life and stories on my Facebook page, it’s not the same. Especially since Facebook is making it so hard to have your posts seen unless you are willing to dish out an arm,  a leg and perhaps even my first-born. (For the record I’m not willing to do that!) So why today then, why this realization today?

Today, as I trolled other blogs and Facebook statuses one popped up by my sister. My sister is a teacher, not just A teacher, a fabulous teacher! But she is so much more, she is also in a program studying to become an administrator. The leadership program she is in believes that in order to be a good principle one day, you need to know why you have the beliefs you have. To do that you have to look back and reflect. Her post today was all about our dad and how she now knows that the road she is following has so much to do with the foundation my father laid before it was paved! Click HERE to read her post. She is an incredible writer, read it, you won’t be sorry!

As I wiped my tears after reading it, it became very clear to me that my father also paved the path for which I too have chosen to journey down. I owe it to him, to myself to be honest. For awhile there my heart was so heavy and well just dealing with my normal obligations was more than enough. But that is not what my father would want, it is not how he raised me to be. My sister reminded me of my father’s beliefs today:

He always made sure we understood that everyone we met deserved respect! Just because people are struggling a little, or a lot, does not mean that they don’t deserve our respect!” 

My sister wrote those words meaning something different from the way they read to me. My father taught us that everyone we met deserved respect..like my Jay, and so many others out there! I get a lump in my throat just typing this because just like my sister finally got it… I too now get it! And I too wish I would have figured this all out while my father was still alive to tell him how he inspired me to do what I now do.

This… this is what I am meant to do, what my father raised me to do. I need to write and do presentations and whatever else I can do in order to invite people to my cyber table where over dinner I can remind them that my boy and all the other Autistic folks out there deserve to be respected! That ALL PEOPLE deserve to be respected, be they gay, in a wheel chair, blind, hard of hearing, Jewish, Hispanic, Black, white, purple, tattooed … you get where I am going here with this!EVERYONE deserves to be treated with respect and dignity and heard and seen!

I get it now daddy and as long as I can, and as long as people will choose to read what I write, I will continue to do so, because that is what you raised me to do. You raised me to try to make a difference. You raised me to fight for what I believe in. You raised me to remember always where I came from so I can always appreciate where I am going and help those that stuck along the way. And most of all you raised me to believe THAT EVERY PERSON IS DESERVING OF RESPECT! I will do my best to spread that message daddy!

Although I have to admit, I will still miss your comments when I do!

My Wish to you for 2014…

30 Dec

2014I was going to write a long post about how I have been reflecting, thinking about all the good and not so good moments that happened in 2013. Good things like my book being published, Jay attending his IEP meeting for the first time and my weight loss. Bad things like my father passing away… you get the picture. But then it hit me. We all have ups and downs.It is part of the roller coaster ride called life. And while those downs hurt, like really really hurt, they make the ups that much sweeter. So with that in mind, I will not burden you with a long recap of my life… for I know to well how you have your own ups and downs and do not need to be bothered with mine. Instead, I will tell you what my wishes for 2014 are for us all.

*I wish that you have more ups than downs in the new year.
*I wish that even when you are smack dab as low as you can get in the middle of the down times (cause like it or not, you will have some) I wish that you are able to get through it by grasping on to HOPE. For even when it is so hard to see it because your eyes are cloudy with tears, it is there!
*And lastly, I wish that you have less fear and more faith. Faith in the future, in yourself, in your decisions and most of all… your children.

Happy New Year my friends. Thanks for joining me on my 2013 roller coaster ride. There is a seat next to me available for 2014… buckle up its bound to get bumpy, but just think of the great views we will have when we get to the top!

This is Autism (written by JAY) Autism Flash Blog

18 Nov

mama and her 7th grader

maman and her 7th graderI am a bit late to the party but you know, that is how we roll around here. Anyway it seems today is Autism Flash Blog day Click HERE to read about it. So I decided to give my boy the chance to be a part… if he wanted to of course. The following is the conversation I had with my brilliant sweet son.

Me: Hey Jay remember last week and that horrible letter I was reading and then the great conversation we had?

Jay: (kind of sad like) Yes, what about it.

Me: Well there is this thing going on now, called  a flashblog, where people are coming together and saying what Autism is really to them. Want to join in on the fun.

Jay: Ok but what should I say?

Me: Whatever you want.

Jay: I don’t know where to begin.

Me: Hmmm, what if we started with what you would say to Mrs. Wright.

Jay: I would tell her she should be careful what she writes because Autism doesn’t mean you are dumb, it just means you think differently. Albert Einstein had Autism so BAM! In your face!

(Laughter from us both)

Me: What about how she said that folks with autism were burdens. What would you say to that?

Jay: I’m only a burden to those who choose to not be lifted up by me.

Me: Wow that is beautiful. Did you hear that somewhere?

Jay: Nope I just made it up.

Me: What exactly does it mean to you?

Jay: If you treat me like a burden than of course I will be one! Kind of philosophical huh?

Me: Very! Anything else you would like to add?

Jay: Yeah can you wrap this up so you can start dinner?

And there you have it! THIS IS AUTISM! If you treat someone like they are burden then of course they will be one! Yeah my kid is pretty damn awesome. Now if you excuse me I need to go make dinner!

Dear Ms. Wright, Autism Speaks and any others out there who may read this…

12 Nov

Chess winner

Dear Ms. Wright,

I don’t have your email address or phone number, so I write this letter and will post here and PRAY that some how it will get forwarded around and someone will see it and show it to you, because you need to read it.

I will start off by saying that I take full responsibility, I should have known better than to read something when my boy was home. With that said… I will continue on.

This morning I started reading my emails and posts the way I always do, every morning in between making breakfast, school lunches and before it is time to drive my boy to middle school. Jay had gone up stairs to brush his teeth and I was enjoying my morning coffee and catching up. I was reading a post from one of my favorite bloggers, Jess from a diary of a mom and decided to click onto the Autism Speaks link she posted and read for myself what you wrote on the eve of Autism Speaks’ first-ever national policy and action summit in Washington, D.C. 

As I said before I should have known better.

I had just scrolled down to part where you wrote this, “And, what about their parents? How much can we ask them to handle? How long will it be before the exhaustion makes them ill?  How long before they break?” My boy had entered the room without a word, amazing how quiet he can be when he wants to. He slithered like a snake behind me and started reading, unbeknown to me. I suddenly felt a tap on my shoulder. I looked up and he simple said to me…

“Mom, do I make you ill?”

I am crying  as I type this. I spent the entire morning trying to be calm and matter of fact like undo this and silently praying the whole time that he did not just  say it is “okay” because he knows how upset I was because that is what my boy who has a shit load of empathy (sorry about the curse words) would do.

I am writing  this and I pray that you some how get it Ms. Wright, and that from this point further you will choose your words more wisely, because I never ever want to see that look on my boys face again!

This has to stop! Never mind the horrible message we are sending to parents of autistic children that their kids are broken and need to be fixed,  that they are burdens and not whole and that they are the reason for broken marriages and all that is wrong in the world.

Never mind the message that we  are sending to people who know nothing about autism at all. That Autism only looks like the picture youChess winner painted, one that is to be feared. I assure you that what you described is not our autism. Our autism looks like my boy holding a 4th place trophy that he received while competing in his first ever United States Chess Federation Ranked tournament this pass weekend. A tournament that was filled with challenges for him, but for which he overcame with more grace and dignity that I ever could and I don’t have autism. Our autism has just as much laughter as it has tears, just as much triumph as it has tribulations.

What kind of message are we sending to our kids? I’m ill right now alright… but not because of Autism, but because of the simple fact that a powerful organization with so much money that could do so much good for our community just set my family back a bunch of steps. I work every day to build my boy up, to give him the self-confidence to go out in a world that already does not understand diversity and where different is not accepted. To think that in one single sentence he read, because an organization has Autism in its name and therefore supposedly has creditability in his eyes, my boy was knocked down.

I will repeat that… my boy, my sweet, intelligent, funny empathetic, LOVING boy who oh yeah just so happens to be autistic… was knocked down.

I know you do all that you do with the best intentions. You love your grandson. I can appreciate how that love would make you want to move mountains for him. I too want to move mountains. But even more than moving those obstacles for my boy, I believe in building him up so he can go out in the world and move them himself! I believe in making my child feel worthy, that he is perfect just the way he is, because well, HE IS PERFECT JUST THE WAY HE IS!  And although he may have challenges, he is capable of doing anything. And most of all I never ever want my boy to feel as if he is some type of burden to me, his family to society because he is not!

Jay if you are looking over my shoulder now and reading this… YOU my dear boy are certainly no burden. YOU are a blessing. YOU are PERFECT JUST THE WAY YOU ARE and do not let anyone ever make you feel differently!

Words matter… what our children hear matters even more.

I take full responsibility, I should have known better than to have read that when he was around. But you Ms. Wright, you should have known better than to have written it!

Sincerely,

Sharon

(AKA Proud Mama of an Autistic WONDERFUL Boy!!!)

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Want to WIN a FREE AUTOGRAPHED Copy of The Don’t Freak Out Guide to Parenting Kids with Asperger’s

2 Nov

FreakOutAspergersCoverSpreadREVWe are approaching our month month anniversary of  the release of the book and as our way of celebrating and hopefully letting lots more people know about what we think is a really really informative and fun book… we are doing our very first GIVEAWAY! And there are all sorts of  easy ways that you can gain chances to win so check this out and ENTER, ENTER, ENTER and tell other folks to do it to!  Of course if you just have to have the book NOW you can purchase right away on Amazon( Click on the book image). And now when you buy the paperback version, the KINDLE version is FREE! (Don’t you just love the word free?)  Make sure to check back next weekend when we will announce the winner!

Good LUCK!
a Rafflecopter giveaway

A New Look For Mama

24 Oct

changes

changesNo I did not get another new hair style. This was even bigger and even harder than that. What do you think of the blogs new look?

My publisher wanted me to grow up a bit and get a little more sophisticated. Not sure if pink polka dot is what he had in mind, but I thought it was fun and stylish! Anyway I will post my professional stuff here like where I will be speaking or any media coverage, new magazines my articles are appearing in… yadda yadd yadda. You will eventually find that stuff in the sidebar under mama’s gotta pay the bills.

But of course I will still blog about whatever pops into my head the way I always do. Some things don’t change after all! LOL

But never mind what I think… what do you think? Leave me a comment letting me know.

A Letter to My Father

13 Oct

ride bike

ride bike

Daddy,

Do you remember when I was 6 or 7 and you were teaching me to ride my bike without the training wheels? I was so scared of falling and I made you promise that you would not let go. You took my hand in yours looked me straight in the eyes and said to trust you. So I did.

With every wobble you reminded me that you had me.  When my balance wavered you reminded me that you would not let me fall.  With one hand you held on to the seat with a tight grip, the other hand softly rested on the small of my back. You were holding me up, keeping me steady, gently guiding me along. You never left my side.

Then just when I got used to having you there… you let go.

I remember looking back at you, a sense of fear and even anger rising through me for after all you had promised to not let go. But that anger quickly faded when I saw you standing there so proudly cheering me on. I remember a sense of peace flow through me, a knowledge that this man waving back at me would always be there, standing firmly in place, waving to me, cheering me on!

How ironic that this memory comes back to me now. I keep looking back Dad, waiting to see you waving back at me, but you are not there.

At first I admit, I was angry that you left. I know it was your time to go and it hurt me so to see you in such pain. I know you are in a better place, peaceful, content. Yet I cannot help but long to feel your hand softly resting on the small of my back.

I miss your smile,your laugh, your words of advice and you proudly cheering me on. But I know that although it will not ever be better, with each day it will get easier.

I also know that although I may not physically see you waving back at me when I look back; you will always be there holding me up, keeping me steady, gently guiding me along.

You never left my side!

I love you daddy with,  every beat of my heart!

Love,

Sharon

P.S. Here is  OUR SONG

Are you my “perfect” or “typical” Reader… did I nail this or what?

22 Sep

FreakOutAspergersCoverSpreadREV

My book is written! Yes finally it is done and the editing process is almost finished. We are in the formatting stage and then it is off to the publisher where they will send us a galley copy for us to proof and approve and then, FINALLY, after approval it can be released to you all who will hopefully Buy,Buy, BUY it.

During all this process I have been constantly asked who is my perfect or typical reader. In other words who is this book intended for, who will buy it who will enjoy it. I found this question odd, especially since you all know how much I hate the words perfect and typical. That said I did have  a reader in mind when I wrote this.

Today I woke up and there was a marketing email in my inbox that once again talked about my typical perfect reader. This email said that in order for a book to be successful you should be able to:

Give a description of the person who is your most perfect reader. Give them a name, gender, age, job, hobby. Know them well enough that if I asked you what flavor ice cream they want, you’ll know.

Anyway I thought it would be fun to see if I Could in deed do this and if so how close I was to describing you all… my most definite perfect readers.

Your name is MOM, you are 35-45ish and although you could easily lead a fortune 500 company successfully you don’t because your attention to detail is needed to make sure that your child’s IEP is being followed, that insurance papers are being filed and that your kid keeps it together enough to finish his homework. There is nothing typical or perfect about you or your family and that is fine with you, because you know that being different is a gift. (You learned that lesson from your child!) Your favorite ice cream is mint chocolate chip but you only buy VANILLA cause your kid can’t handle stuff being mixed together and would never eat your favorite type so well… you just don’t buy it.

How do I know this… because you are ME! Accept I finally have allowed myself tFreakOutAspergersCoverSpreadREVhe luxury of buying Mint Chocolate chip and hopefully one day soon you will too!

Okay so how well did I do? Let me know. Oh and also let me know what you think of this Draft copy of our book Cover…