Autism Awareness Month

I wrote this blog entry on World Autism Day in 2012. 

Jessica and World Autism Awareness Day 2012

A letter to my daughter Jessica, on World Autism Day:
Dear Jessica,

When you were born, I was most excited about your blue eyes. Your father and I both have brown eyes, and everyone told me the color would fade from the sparkly blue to a darker brown. I knew better. I sensed that you would have blue eyes. Having blue eyes meant an awful lot to me back then. Maybe I thought children with blue eyes were treated better, or that because of your eye color things would come easier to you. Whatever ridiculous notion I had about your blueberry eyes, was just that; ridiculous.

Autism strikes no matter what color your eyes are.

Jessica, you have autism. I don’t think I have ever spoken that sentence to you. As a mother, it is hard to speak about labels and disabilities to your child. But know this, you may have autism but autism certainly does not have you. It just makes some things harder for you. Playing with friends, or going to school is hard for you because of autism. Loud noises and transitions are hard for you because of your autism. But autism has also given you so many wonderful traits. You are a talented artist. You would draw all day, every day if you could. You know more about cats than I could ever hope to learn. Because of you, I know that the Turkish Van is a cat that likes to swim. That is one cool thing to know! Thank you for that tidbit. Autism gives you that enormous and creative imagination. You are the most imaginative person I know. You have introduced us to your gang of imaginary cats, headed by Anga. Anga is pretty awesome. She used to work at Subway, and she is British? How cool is that??

This might sound a little odd, but I would like to thank autism for giving me such a wonderful daughter. I couldn’t imagine you any other way. You are a blessing to every life you touch.
Thanks autism, for my blueberry-eyed, creative, magical, loving, and silly Jessica. If you didn’t give me the beautiful parts of Jessica, I would never be able to laugh through the hard days.

Love,
Mommy

Jessica and Panera

I decided that I wanted to spend a little one on one time with Jessica this past weekend.  When she got home from school on Friday, I told her we were going to have some "Mama - Jessica time", but that she needed to pick where she wanted to go.  It took her all weekend to decide.  I asked her quite a few times, and she really had a hard time coming up with a location.  I really wanted her to tell me where she wanted to go because it was a round about way of getting her to express some emotion. 

Finally on Sunday I started to give her examples of places we have been to in the past that she had enjoyed.  Jessica decided that she wanted to have lunch at Panera with me.

We got there around 1:30, and the place was PACKED.  We could barely get in the door.  Before ordering we tried to find a seat, knowing that walking around with a full tray of food would make it more difficult to maneuver through the bustling restaurant.

Finally locating a table, we put our coats on the chairs to save it.  When we came back  I could tell that Jessica seemed a little rattled.  I looked around and realized that this was an incredibly hard place for a person with sensory issues to be in .  Not only was it was loud, but people were crammed in everywhere.  Every time someone walked by our table they knocked something off.  It was THAT crowded.

At that point I started to realize that not only was it a sensory nightmare, but anyone who had any kind of physical disability would not be able to navigate through the restaurant.  People were squished into booths, chairs jutted out into already small aisles, and patrons were wandering around carrying hot trays of food.  A person with a disability would have to try and find a table at the front of the space to have any hope of being able to enjoy themselves.  God help them if they had to go to the bathroom, because that was at the back of the place.

I asked Jessica if it was hard to be at Panera when it was this loud and crowded.  She answered right away stating, "Yes, it makes me anxious."  You could have knocked me over with a feather!  Jessica never answers questions about feelings on the first try.  I then asked her what we could do to make her feel less anxious.  I, of course was thinking that she would ask to leave, but instead she mumbled, "eat my soup."  So Jessica ate her soup, drank her Sierra Mist and we got out of there as soon as we could. 

It still resonates with me that a company known for socially thoughtful practices doesn't take a look at their spaces and factor in people with physical disabilities.  I will concede that they have a sign at the front registers with the handicap symbol that allows people with disabilities to order at an easier access point.  What happens after ordering their food?  What if there are no spaces available up front?  Having a tray full of food and nowhere to eat it is not fun.  Just sayin'. 

Jessica and political signs

Jessica loves reading political signs.  I have never tested her, but I am pretty sure she could name all the candidates that ran for office last November.

I have used this love of political signs to my advantage.  We read the signs together while driving, and for some reason saying the names of the candidates opens Jessica up to having a two way conversation.  It is a total bonus when the person running for office has a funny name, because Jess gets very giggly.  I don't know what it is about the signs, but I'll take a reciprocating conversation any way I can get it!

We have a special election coming up this month in my town for School Committee.  For the past few weeks Jessica has been reading the signs for one of the candidates,  Zora Warren.  For some reason she likes saying her name.  I suspect it is because one of her favorite Pokemon is named Zoura. 

This morning, we went down to Main Street and held signs for Zora.  I introduced Jessica to Zora, and Zora shook her hand.  The reaction from Jess was classic.  She acted like she was meeting a movie star!  It was obviously exciting for Jessica to meet an actual person that belonged to a political sign.  I think I might have to get her out there holding signs again next week!

Jessica and shirts.

Jessica wore a shirt today! (and it didn't even have a cat on in). 

In most households this is probably a normal occurence, but in ours it was quite exciting. 
When I told Jessica she could wear a shirt, she blurted out loudly, "YAY!  Yahooo!  A shirt!!"

Who would have thought that an item of clothing would have elicited such excitement?

I can't remember if I have ever explained how difficult it is for Jessica to transition season to season in appropriate clothing.  She will often still be sporting a hat and gloves in May, or try to get away with a tank top in November.   This is a fight that I wage every year, as do a lot of parents with kids on the spectrum.

 At the beginning of the year I bought her all new cat shirts - because we all know Jessica will only wear shirts with cats on them.  We probably have 25 cat shirts. Where does one buy cat shirts?  Old Navy of course.  Thank God for Old Navy. 

So I bought all of these shirts, and Jessica started to grow out of them as her body changed (puberty is awesome).  She would be wearing these tight cat shirts and leggings (because we all know zippers and buttons are banned).  It was not a pretty sight.  Then one day I took her to Sears and we bought 5 Lands End dresses to go over the leggings.  She tried them on, and picked out the ones she wanted.  Slowly but surely, we got rid of the cat shirts. 

The dresses were beautiful on her, and once she started to wear her fake Uggs with them she looked even better.  Her teachers complimented her, and told me how great she looked.  It was a miracle.  I got her out of the cat shirts.

Now, don't get me wrong - the dresses have not been a breeze to transition into.  When Jess is having a particularly rough morning she will scream, "I hate dresses!  I want to wear shirts!"  This happens at least 3-4 times a week, and can strike when you least expect it.  Last week I picked her up from school and she read me the riot act about her dresses. 

                                         Jessica in her purple snowflake dress with Anga

Fast forward to this morning.  Everyone at school was going to be wearing green for St. Patrick's Day.  Jessica does not have a green dress, so I was a little worried about what I would do.  Then I remembered that back at the beginning of the school year (pre-dresses) her teacher and I came up with the idea that I would buy her some big generic t-shirts from the craft store and she would have her wear them for a short time everyday.  The goal was to get her out of the cat shirts and into a shirt that fit appropriately.  I remembered that one of those t-shirts was green - SCORE!

I woke Jessica up today, and told her she could wear the green shirt and not her dress today.  Like I said earlier - her reaction was priceless.  Who would have known that a $2 green t-shirt could have made someone so happy?  Not me.  But then nothing Jessica does is expected.  The kid keeps me guessing everyday.  Gotta love her!

Jessica in her green shirt with her brother Jack

Jessica and her weekend

This past weekend was one of those special weekends in the world of Autism that you just want to bottle.  One of those weekends when your child is open to anything you suggest.  Get a haircut?  Sure!  Take a shower?  Why not?!  Take a ride in the car with no agenda?  Well of course!

Jessica was happy, and willing to accept whatever the weekend had to offer.  She ate meals with the family, and actually ate the same thing we were eating.  She took an unscheduled shower on Sunday, which normally would have thrown her off. Jessica was the first one with her shoes and jacket on as we were going out the door.  It was truly a thing of beauty.

Wouldn't it be wonderful if every day was that easy?  Here's hoping that your family gets the same kind of magic mine did.

Jessica and my new found path

Over the past few years I have become increasing involved in the special needs community in Massachusetts. I have done a lot of volunteering in my town, and have recently moved on to more of a state level participation. I have found that this leap has been extremely rewarding.

  One of the highlights of the special needs community in Mass is the Federation for Children with Special Needs Visions of Community Conference. It is held every March in Boston. It is a wonderful event where parents and professionals come together and talk about every subject you can think of pertaining to our awesome kids. Mental health, insurance, bullying, technology - you name it, there is a workshop for it. It really is a community day. You can turn to the person to your right and meet another parent who "gets it". Or turn to your left and have an incredible networking opportunity.

This is my 4th year attending the conference, and my first time actually making it through the whole day. I attended all 3 workshops I signed up for. The conference runs from 8:15am-5pm, so this is an accomplishment.

On my drive home I was thinking about why this year was different for me. I came to the conclusion that I am truly ready to open myself up to everything this path has led me to. I am ready to take the next step. I am not just a bystander anymore. I am a changer. An informer. A trailblazer. All thanks to my beautiful daughter Jessica. Thank you my love. You rock.

Jessica Updates

I have been a bad Mommy-Blogger, blah blah blah. Thank goodness we got that out of the way! So many new things have happened since the last time I took a spin in the old blogosphere. Jessica is in a fabulous PDD classroom at school, and I couldn't ask for a better placement. She is in 4th grade this year, and recently tested in "superior" in spelling. I won't tell you the rest of her scores, because I have cried enough today! I will take the small victories. Puberty has hit Jessica, and it isn't pretty. I will spare you the details, but a girl that talks to her stuffed animal while manuevering feminine hygiene products just seem right to me. Although we were very prepared because of this product. Jessica has also branched out in the animal world, and has a new found love of wolves and foxes. Again, she knows more about these animals than I could ever hope to know. I love how she is able to delve into a subject and truly live it. As much as she knew about cats, she knows more about wolves and foxes. We are very lucky to have a Wolf sanctuary in our area called Wolf Hollow. We went there this fall, and she loved it. If you are local to Massachusetts, I highly recommend it. Jessica asks me all the time when we are going back. Jessica continues her love of drawing. I am hoping to be able to get a few away from her and scan on this blog. She is quite talented. She is actually going to take an Intro to Anime class at our local art center The biggest news is that I started a Twitter account for Jessica. Every quote comes from Jessica. It is quite comical. Please follow her: @JessicatWolvino I think that is it for now. I am making a March resolution to blog more, so come back for new Jessica scoop. Mom