But wait, there's more!

Just a quick addition to the post of progress yesterday….

Last night, Alyssa’s dad pulled a word doc up and typed her name.  We invited Alyssa to come see it.  As soon as she was in view of the doc, she said, “Alyssa”.  Then, she sat down and typed Alyssa, saying each letter as she typed it.  She concluded by repeating her name.  So awesome! 

Have a great day!

abcgefghijklmopqrrrstuvwwwxyz

Before getting going here, I would like to thank all of you for your feedback, encouragement and suggestions!  I want to share a couple fun stories first.  Then, I have a story, which I hope will excite and inspire you, as it did me.  I will save the best for last. 

My first story goes back to when Alyssa was 1 ½ years old.  I went to JC Penney to do a little shopping.  Mostly, this shopping was for Alyssa.  I pushed the stroller and walked through the store, carefully going up and down the isles and around each rack.  When I was finished, I went to the register, paid and went directly to the vehicle with the intention to leave.  I unloaded my bag, then proceeded with Alyssa to her side of the vehicle.  As I leaned over to pull her from the stroller, I realized, Alyssa had a slew of clothes stashed in and around her.  OH MY GOSH!!!  She's a thief!  I rushed back into the store.  I went to the closest cashier and said “I need to return these clothes, my daughter stashed them into her stroller”.  The lady looked straight at me and said “would you like to exchange them or have a credit?”  I exclaimed, “No, no, I am not returning them for exchange, I am returning them because they are not mine”.  She looked so confused.  Then, she says, “so, would you like a credit?”  I slowed myself down and carefully explained the entire situation.  I never realized how hard it could be to do the honorable thing.  After that point, it was very clear, Alyssa needed some real attending to at the mall.  Lucky I didn’t get arrested.  Funny, she does not like to step foot in a store these days…. Maybe it’s because she didn’t get away with shop lifting.

This next story happened on New Years Eve; Alyssa was barely 3 years old.  We went to sushi, for an early dinner.  This particular restaurant is busy from the time they open their doors, until closing.  They don’t waste space with seating.  Because we had a child, they considered us to be more like 2, instead of 3 people and sat us at a very small table, squished amongst other small tables.  Alyssa hadn’t had sushi before, this was all new territory.  We thought it would be best to start her with some tempura veggies.  We ordered a sushi roll for ourselves.  The veggies came and Alyssa immediately pushed them away.  She went right for the sushi and LOVED it!  When the plate was clear, Alyssa looked behind her, turned around and helped herself to the sushi roll on the table behind us.  She had a graceful ease about her.  It was embarrassing and adorable, at the same time.  Of course, there was no hesitation to replace the roll for the other diners.  Yet, we realized quickly, it was time to get out of there.  I knew sushi was expensive, but Alyssa’s appetite, along with her desire to share with neighborly diners, was certainly going to break the bank.    

Yesterday, Alyssa did the most AMAZING and awesome thing.  When we got home from school, I unloaded her things, while she ran about and emptied her basket of toys into the middle of the room seeking what she wanted to play with.  Since, she seemed fairly occupied; I decided to check my email.  I started to reply to a friend, when I realized, Alyssa needed to go to the bathroom.  I was too late and disaster struck.  I raced her upstairs for a bath, forgetting about the email I was replying to.  After her bath, I proceeded to “chore-land” with the intention to continue working on the never-ending feat, called laundry.  I transferred everything, started another load and went to fold and put the dry ones away.  As this was going on, Alyssa was delightfully jumping on the bed.  When she was done, she took off for downstairs.  I finished making her bed, and then followed.  When I got about half way down the stairs, I could hear Alyssa saying the alphabet.  As I got closer, I could hear her plunking the keys on the computer.  I slowly walked over, working my way behind her, to see what was happening.  This is what she typed….

Abcgefghijklmopqrrrstuvwwwxyz

My email was still open and she had simply sat down and started typing, while saying her letters aloud.  I was so excited, my eyes were filled with tears, my heart with joy.  Why all the fuss?  Read on….

A while back, a friend of mine sent me the most beautiful You Tube video.  This video is of another young girl who has Autism.  Her name is Carly.  After watching the “Carly video", I couldn’t get my hands on a computer fast enough for Alyssa.  Not only did I get her a computer, this computer has touch screen capabilities, since Alyssa has not mastered the concept of the mouse. Over the past couple of years, the school has incorporated the use of computers into Alyssa’s technology plan, to assist her with learning activities.  We continue to see Alyssa take interest in the computer and she has demonstrated learning, as well.  Carly's story has inspired me and been part of my hope with Alyssa.  I look at my beautiful young daughter and I pray, she too, will be able to express herself..  And, yesterday, just yesterday, I got to see the computer come to life, with Alyssa behind it, no help, just her!

I have included the link to the “Carly” video for your viewing pleasure.  Have a great day!!!  Angie

p.s. I originally planned to write about something else.  Yesterday's event changed my plan.  :)

Shattered Expectations

If Alyssa only knew, when I was pregnant I set these expectations to what motherhood would be for me.  In my mind, I had all these great ideas.  This was going to be perfect.  I had it all planned out.  We would start in play groups. Later, we were going to have sleepovers, birthday parties, after school sports and activities.  I would be soccer mom.  I would have the sticker on the back of my vehicle that reads “my student is on honor roll”.  This was all fantastic.  And, I didn’t stop there.  I went as far as dreaming about her fairytale wedding too.  I am not sure if all moms do this, but I did.  Now, I am sad I had those thoughts, maybe even ashamed.  I am sad I allowed myself to think perfect would be perfect.  What if Alyssa thought, those things are what I really wanted and that she somehow let me down?  What if this amazing young girl thought nobody believed she could learn because she's unable to give us the responses we are looking for?  What if she thought her Autism was too hard for her friends, family, educators and society to deal with?  What if she saw the “my child has Autism” sticker on the back of my car, replacing what would have been the honor roll one?

It all makes me sick.  Here I was, so determined, I never thought of the possibility of having a child with Autism.  I never thought I would be spending my days advocating for her education; and nights sleepless in worry.  I was selfish and a person who needed to gain some lessons in life.  What was really important?  Well, back then, let me just say, I didn’t even know what Autism was.  I don’t remember seeing it in the tabloids.  Nobody from my family or friend network ever talked about it or had children affected by it.  In fact, my friends and family mostly discussed the “really hard stuff’, like dealing with unruly teenagers, work issues, financial difficulty, car troubles, burnt toast, what to wear, etc.…  I am sorry, Autism didn’t cross my mind and I really didn’t know what it was. 

I used to set expectations and be devastated if what I expected didn’t happen.  This thinking never considered how others might be affected. It was selfish.  It was all about me and what I thought and wanted.  I believe Alyssa has saved me from me.  She is my world and she is in no way anything less than exactly what I want and need!!!  She brings more joy to my life, than I ever had before.  She gives me a reason to get out of bed each day.  She challenges me too!  And, love?  I didn’t even know what the word meant.  Alyssa has taught me so much. 

I would like to suggest, we shatter our expectations and aspire to something bigger, better, greater, filled with love, hope, faith, and integrity.  I would like to encourage the world to embrace what is different and find ways to allow there to be lessons from those differences.  I would like to encourage us all to let go of our expectations, allowing us to be more flexible.  If we aspire to great deeds, we will have a better chance of accomplishing them.  Aspiration is a strong desire to achieve something great.  At this point in my life, I aspire to be a better person and a better mom.

I have to tell you....  Today, Alyssa is skiing.  She is having so much fun.  She is excited to ski down, just so she can get back on the chair lift.  Her smiles says, "let's do it again and again".  How wonderful.  :)

Thank you for reading my blog and have a great day!!  Angie

Brought to you every WEDNESDAY

Thank you for taking an interest in my blog and website.  I am excited to continue sharing on a weekly basis.  You will be able to read my latest writing, every Wednesday.  I hope you will start to follow and share this with others you know.  I would love to invite you and all your friends/family into this journey, as you never know who this may benefit.  Please ask your friends and family to pass on the information, as well.  THANK YOU!

                                                               

The website is www.thenewfaceofautism.com and from the website you can be linked directly to the blog. 

I will offer a new writing each week and would love to have your comments, feedback, suggestions and interests.  I will do my best to reply to all comments left in the blog. 

Thank you for all of your support!!!  Until next Wednesday, January 19, 2011…..  Angie 

Why is it called "The New Face of Autism"?

Today, I thought I would explain what “The New Face of Autism” means to me.  Seems to be the most popular question I am receiving from family and close friends.

Let me ask you, when you look at this face, do you see a disability?  Do you see a child who has communication difficulties?  Do you see someone who looks unhappy?  OR, do you look at her and think to yourself how precious she is and you are “wow”ed by her smile?  See, if the world didn’t know Alyssa has Autism, we could all have this great hope; she could be or do anything she wanted, without limitations.  I am challenging everyone to believe this is the future for her anyhow.

When I read articles about children with Autism, what I have seen so much of, is this display of children who have “recovered” or been “cured” from some type of therapy, special diet and/or medication.  Alyssa does therapy, special diet and medications/supplements.  The truth is this; she is much, much healthier, than she has ever been and she has made progress over the years, but she’s not “cured”.  I want to see the article and picture of the child who hasn’t recovered or been cured, but who’s family believes in her regardless.  I want to read the book that can give us hope and make us feel “ok”, even if the child in the story isn’t cured, has special needs, and still has Autism.

I joined a group at one point.  I was overwhelmed by the anger, frustration and hopelessness shared by so many families.  I completely understand; I do!!  However, I believe, we absolutely have to get out of that thinking.  What if our kids caught on to all of those feelings and didn’t think we believed in them?  For me, I want to be a part of the success, the positive, the hope, and even the difficulty.

You have to know, I feel we have some of the BEST therapists, we have an AMAZING doctor and a GREAT group of people in her school working so hard to make a difference for Alyssa.  We are incredibly fortunate.  What I admire so much in all of these people, they believe in her.  They take on the challenge and don’t put limitations to the outcome or her ability.  They treat her with respect and kindness.

What I see is this amazing beauty, happiness, and love from Alyssa!  When you look at a picture of a child with a disability, I think it is almost natural in our society to feel sorry for them.  When you look at this face, I want you to have hope!  WE believe in her and I want you to be able to, as well.  I would like to think she will be on the cover of a magazine someday, representing that differences can be beautiful.  And, I would love to see Alyssa give strength to others, who may have a dream.

Bottom line, I would like to think, this face, this amazing young girl, will give us all a new perspective, a new attitude!

Have a great day!

The Face

Reflecting back on my first writing, I thought it would be good to start with some history on "The Face".  That gorgeous, double dimpled girl is Alyssa.  Alyssa is now 7 years old.  She was diagnosed with Autism Spectrum Disorder, ASD, when she was approximately 4.  Prior to her diagnosis, Alyssa was described as having “global and significant developmental delays”.  One doctor diagnosed her with “Alyssa Syndrome”.  Doctors were perplexed by Alyssa.  We were told everything from, “she is a mystery” to receiving guesses, which would later be proved wrong during medical testing. 

All in all, I really liked “Alyssa Syndrome”.  It made her so unique.  It kept her from having a devastating label.  It made it easier for me to cope.  If she had delays, it was fine, as long as, she wasn’t labeled wholly by a word like “autistic”.  I believe my daughter has autism, but she is so much more than that.  I would challenge people in our society to look at this disability differently.  First and foremost, Autism is just one little part of who she is.  Our society quickly says, “I know someone who is Autistic”.  Does this mean, the person has no qualities, other than, the description under the definition of Autism?  Enough said, Alyssa is a beautiful, funny, interesting, inquisitive, curious, loving, friendly person who also has Autism.  Fair enough?

Alyssa has the best spirit.  I love it when she will come up to me and put my hand on her belly, so I can tickle her.  If you look at her as a person, without so much of the label, it’s very interesting to see how much she is EXACTLY like other children her age.  This is how she began to shape, and transform, my thinking from her having a disability, to her having abilities.  I feel I am very lucky to have had this transformation in thinking. It’s so easy to be impacted so deeply by the label, it stops everything you could do, or be, from happening.  The label can be suffocating.  It hurts. 

The diagnosis came about when a Psychiatrist was invited to the school to assist them with Alyssa's behavior issues.  Alyssa had everyone wrapped around her little fingers.  She would scream and everyone would jump.  This was a very natural reaction, I believe.  We did the same thing at home; scream, jump; scream, jump.  The more we all responded, the more she screamed (and the more I thought I was losing my mind).  The Psychiatrist simply guided us through what was happening and gave us all techniques to put in play, so she would have the opportunity to change this behavior pattern.  And, it worked.  Whew!!  The Psychiatrist then met with my husband and I, to have further discussion.  This is when he offered to tell us "his diagnosis" of Alyssa.  I confused what he was talking about.  I thought he was giving me his evaluation, a continuation of information and how we could work with our daughter at home.  WRONG!!  He really meant “diagnosis”.  As he unfolded the diagnosis to me, I was in shock.  I was cool with her having Alyssa Syndrome…  I didn’t want this.  “What do you mean?  Why are you telling me this?”, I was saying to myself.  He asked if we were okay.  We said, “yes” and went on our way.  I remember not knowing if I was going to make it all the way to the parking lot.  My feet were one in front of the other, but my legs were turning into spaghetti and my heart began to ache in such a way, I felt like I couldn’t even breathe.  We got to our cars, I started driving, and called Sue.  As I sobbed, the most of what I remember is Sue asking me, what was upsetting me the most.  The answer, it was permanent!  Sue knows how much I love my little girl.  Sue re-directed me by reminding me, it didn’t matter what the diagnosis was, Alyssa was still my angel.  She was right!

Yes, I still had to cry for 5 days, before I allowed myself to pull it together.  Then, it was time to start making a difference.  I needed to figure out how to help Alyssa.  I am not saying to you or anyone, they shouldn’t grieve, but moving forward was very important!  Bring on the literature!  HA!!  There is so much out there.  Where to start?  The internet, of course!! 

That's it for now.  I have other responsibilities.  Please continue to follow and know, I am incredibly inspired to share this journey.  If Alyssa can make the difference for one person, score - that's one in a row!!  Have a great day!

The New Face of Autism: Today is just the beginning!!

The New Face of Autism: Today is just the beginning!!: "It has been an ambition of mine for a long time, to create a blog. I have wanted to share my angel with you. You may not know he..."

Today is just the beginning!!

It has been an ambition of mine for a long time, to create a blog.  I have wanted to share my angel with you.  You may not know her yet, so I will start by telling you, she has Autism.  What I hope to accomplish is offering a whole new perspective on Autism. There are many sites about Autism and I often feel, most of what we read is the hard stuff.... This new face, I hope will inspire you. She makes me smile, she makes me cry. She is so amazing.  She has more to teach me, then I could ever teach her.  That face, that smile, that love is so real and amazing.  I finally learned, there really is unconditional love.  How did I get so fortunate to experience this?  Now, I must pass this on to you.

I don't believe Autism is an illness, maybe it's a gift.  Autism is beautiful and different.  In the beginning of this blog, I need to say, if it wasn't for the people who are a part of our lives, I may not be so fortunate.  Thank you to our friends & family, my mentor and lovely friend, Sue and to God for showing us that we have the most beautiful gift.

It's hard to find out that your only daughter, your only child, has a permanent disability. The part that isn't permanent - the "dis"!!  She has soooooo much ability. Okay, so she doesn't do what other kids do, I know. And, she is still in diapers, I know. Fine, you are breaking me down here, she has limited receptive and expressive communication too.  But, when she looks up at me, when she smiles, when she laughs, I believe there is a heaven in her.  I see an entire story, just in her eyes.  She doesn't have to talk to give me that.  And, if she is still in diapers, it is what it is.  I suppose we will have to "get over it".  I will look into her eyes and overlook the diaper.  When our society begins to do this with me, we will all gain from it. 

I want to tell the world how she had 14 kids that WANTED to come to her birthday party.  Gotta love all of them for wanting to be a part.  What's the big deal?  You will see.   

I remember the day we received Alyssa's diagnosis. I was trapped, I cried for 5 days straight, to no avail. Eventually, I had to decide "what are you gonna do about it".  I want to celebrate her!! 

And, each of us has a choice... what we are gonna do with it?  Does it still make me sad? Yes. Does it still make me mad? Sure. Do I pity myself? Not anymore.  Do I cry? Absolutely!!  Do I get frustrated? Well, you probably know the answer to that... LOL  By the way, I am very, very human!  Ha!

To all of you who join our journey, please know, it may not be perfect.