Looking to the Future

On the evening on June 30th, I resigned from my role as editor-in-chief from Autism Parenting Magazine. I will miss many of the wonderful people I have met while being editor. I am looking forward to what the future holds and I am exploring many options. I would like to say thank you to the people that have been supportive during this difficult transition.
In the future-
I will be speaking in Phoenix, AZ at the Back to School Conference on September 14th at the Autism Conferences of America.
I am an active Board Member for Hope 4 Autism, which is looking for runners and volunteers at the Hartford Marathon this October 11th. Hope 4 Autism will also be having a cupcake fundraiser in September which I look forward to helping plan.
Please like my Author page on Facebook https://www.facebook.com/AuthorLeslieBurbyhttps://www.facebook.com/AuthorLeslieBurby to stay connected and up to date with the latest autism, and special education happenings.

Leslie

BEWARE ASD COMMUNITY

There is one thing I can’t stand more than anything in the ASD community and that is people claiming to be “experts” on a subject when they haven’t lived or experienced it themselves and creating products/or paid-for-advice for autistic individuals or their parents for significant financial gain without considering if the advice or products they are selling are actually benefiting or harming their customers. Don’t get me wrong there are good intentioned people out there that don’t know anyone directly that has autism but still want to learn and help people in the autism community. Plus when you donate a significant amount of time to studying and creating something you do need to recoup some costs or you will eventually be living under a bridge.  However, I caution parents to please consider your sources of information and the sources motives. If their number one motive is to make money from you – then BEWARE!  The advice or product/s they are selling need to be researched before using them on your child or student. Please be careful! It only takes an extra minute or two to do a Google search of reviews of a product or informational source. I also will tell you that some reviews need to be read carefully though because I have seen people write pieces that are completely inaccurate, but again it just took an extra minute to do one more search of their claim to prove that their article was entirely fabricated. As a parent of three children, (two on the spectrum) I urge you to please consider your source and guard your money. Make sure that money you donate and spend goes to safe, moral causes and/or businesses, etc.  Just in case, there is a negative viewer out there that thinks that I write and edit only for financial gain let me explain one thing - I make it a goal to have sound advice for our children and parents through the magazine and have insisted that people that can’t afford a yearly subscription still have access to some of the information through our You Tube channel and the Autism Parenting Magazine blog.  Ultimately, the magazine is a business and it has expenses so we must charge to keep up the production but know this I will never knowingly sell bad information or recommend a product that I haven’t tried for my own financial gain without considering the effect it has on people’s well-being or finances. 

I have Failed

The other day my daughter came home from school agitated. This is not uncommon. Some days are difficult because she has been bullied, or no one would play with her at recess, or she was overwhelmed with sensory stimuli.  Of course, trying to get her to tell me why she is agitated would just agitate her more so I gave her a snack and let her go calm down.
Later that evening, I told her that her school was trying to raise money to have an author come to the school and I wanted to know if she would mind if I went to the school to speak for free to help the school save some money and help educate everyone about autism and acceptance.

The conversation went like this:
Me: "Hey, hun, your school is having a Read-a-thon to raise money to have an author come to the                school. Do you think it would be okay if mommy went to the school to speak as an author?"

Her: "Can I stand on stage with you?"

Me: "I don't know. I don't know if they will even choose mommy."

Her: "Why won't you let me stand on stage with you?"

Me: "I didn't say NO, I said I don't know because it would be up to the school probably."

Her: "Well, what would you talk about? I don't know what you talk about when you go give speeches          to people."

Me: "Remember mommy told you that she helped start Autism Parenting Magazine to help other parents        understand autism, so they know how to help their children? So I talk about autism."

Her: "Are you going to tell everyone that I have Asperger's?"

Me: "Well, no, not if you don't want me to but many people know already."

Her: [angrily] "What?! You told them!"

Me: "Well, the school knows because it is their job to help you when I am not there so they need to know."

Her: "Who else knows?"

Me: "The people on our street."

Her: "Why would you tell them?"

Me: "I didn't run around hanging signs, hun. They asked me.."

Her: "They asked you if I had Asperger's?"

Me: "Well, no some of them asked me why you were acting a certain way one day and it came out.              Others asked me about my books and if I was writing about parenting autistics, did I have an              autistic child?"

Her: "I don't want anyone to know! I tried to tell my group at school and three [of the five] kids                  laughed at me. When I told them not to laugh at me they laughed harder."

Me: "Honey I am so sorry. Maybe they were just laughing at the word Asperger's because it sounds            like ass-burgers? [I tried to hug her.] Look I'm very sorry if I disrespected your privacy by telling        people. If you don't want me to than I won't mention your name anymore and I won't speak at            your school. You have to know that I wrote the children's books to help children understand                autism. Most children laugh at it because they don't understand it. I'm sure the children wouldn't          laugh at someone that had a physical disability and was in a wheelchair. I just thought that if we            explain it that they will treat you better."

Her: "Don't you see they treat me different and if you tell them I am different then they will ALL treat         me different!"

Me: [On my knees] "I am truly sorry if I have ever made you feel different. I know you have trouble           making friends but I am so jealous of how smart you and your father are and what an amazing             memory the two of you have. I know that you have some days when you get overwhelmed by             your senses but you are an amazing person. I was trying to show the world how amazing you are.       Mommy has told you that lots of awesome people have Asperger's like Einstein and probably Walt         Disney. Just think how boring our world would be without Disney movies? You knew that I was         writing the children's books based on things that you have done, why didn't you tell me you didn't         want to be mentioned?"

Her: "I didn't know how cruel people were then."

End conversation.

From now on I will refer to my daughter not by name to respect her privacy. She has taught me an abundance of knowledge and I hope that one day she will see herself as the amazingly awesome person that I see her as. I feel I have failed her, while trying to protect her and for that I am sorry. I have always tried to respect every individual for who they are and she feels disrespected. This was never my intention, I merely was trying to share the knowledge I have with others to make their journey a little easier during the difficult times. I was hoping that maybe when she is older that she would stand on stage with me and proudly say I have Asperger's and be a positive voice much like John Elder Robison and his son; or Temple Grandin and her mom Eustacia Cutler. Or maybe I hope that she will grow to be an author about her experience like how Jennifer O'Toole created Asperkids; or Jeannie Davide-Rivera wrote Twirling Naked; or how Renee Salas wrote Black and White: A Colorful Look at the Spectrum. As we continue to grow, I hope we continue to learn from each other.

My first children's book

My apologies for neglecting the blog. I have been fighting a battle with bronchitis which won when it turned to pneumonia and then left vertigo to linger. 

Anyway, I have very exciting news - my first children's book Grace Figures Out School is finally available. It is currently available on my publisher's site.  It will be officially released on January 10th, which means it will be available for sale at bookstores and major online retailers like Amazon. 

Please note that I am available for book signings, speaking engagements, writing workshops and more. I do not charge for book signings, or speaking engagements in and around my state (CT). The writing workshops depend on the time and distance needed. I have worked with my publisher to create my book as a coloring book for one dollar less than the price of the book. Also, I have asked them to create lined journals for writing workshops for children and even journals with wide lines (including the skyline and grassline, etc.) to make it easy for children to learn how to create their own stories.

Please contact me through Twitter @LeslieAPMag. 

For more information on the book read below: 

One of the biggest struggles I face as a parent with children on the spectrum is the judgmental comments that are frequently tossed my way.  This children’s book was inspired by my daughter with Asperger's when she was told to "throw out her ice cream cone" and she literally threw her cone across the restaurant. It made a huge splattered mess and she realized I didn't actually mean to "throw" it. She immediately started to cry and said, “But you said, “Throw it, out!?”

It was a lesson we both learned from, but as I hugged my daughter and cleaned up the mess we had to listen to people's comments about how I should hit her to teach her a lesson and how I was such a horrible parent. After cleaning up I suggested that the onlookers Google the word Asperger's and explained that figurative language doesn’t come easily to everyone. I have used the opportunity to write books for ALL people to teach a life lesson, a literary lesson and autism acceptance. This first book of a series is about the life lesson of attending a new school, while everyone in the class learns about autism, and figurative language. This book truly blends my two passions: English and special needs. I truly believe that we all have uniqueness that should be shared and understood. I believe that with knowledge comes understanding and with understanding come acceptance. It is my hope that every library in the world will own a copy and show that all children should be treated with kindness.  I encourage you all to "be curious, not judgmental."

Free to be a kid

As I mentioned in a previous post, we moved to a new, safe neighborhood near a park filled with children thinking that this is where our kids could be kids.

Sadly, this is not true.

The “Land I love” is not what it used to be. People are fearful of lawsuits and the laws keep piling up. So fast in fact that people can’t keep up with the latest restrictions. John Elder Robison shares his own frustration about this in his latest book Raising Cubby, where he explains how he was almost arrested for taking a picture of a subway and how his son was raked over the coals for having a chemistry lab at home.

This saddens me. When I need a reminder that my kids should be able to be kids I read Walls Are to Be Walked by Nathan Zimelman. Sometimes, I wish I owned at least twenty copies to handout to adults that need to be reminded of what it was like to be a child.

You see I remember growing up in the country and although my parents were fearful of me leaving the yard – they let me. They let me go and play with the other neighborhood kids. They let me scrap my knees and play baseball with the boys. As a result, I made mistakes like trying to slide into first base and getting a raspberry on my thigh that I thought would never heal. However, these life lessons have taught me more lessons than I would’ve ever learned staying cooped up in my yard.

I learned how to share, and take turns, and cooperate. I learned to bite my lip, to hold back tears and to be brave. I was given a small amount of independence and proved that I could make wise choices and make my parents proud. I learned so much by having a fantastic, adventurous childhood.

However, here we are today and I meet more and more parents that won’t even let their children play in their yards unless they are within twelve inches of them. For small children – I get it. They are still forming their Do’s and Don’t’s, but how are the kids going to learn trust and independence if no one allows it until  age 16 or later at college.

Has anyone thought about the fact that if you gave the kids some responsibility before they turn 16 that they might know how to properly act when the time comes?

Instead we smother them only to release them to the lions at 16 or at 18 when sent away to college to deal with everyday important moral and monetary choices. What happens – they fail! Why? This is what happens when they have had no experience in making small choices.

If it is our job to parent, then teach them the values and the principles in which you believe. Then let them put the principles into practice, watch and instruct, but eventually you need to let go and let them make choices.  Otherwise, you are telling them – I do not trust you to make your own informed decisions. You are not worthy of making your own choices. I remember your mistakes and don’t believe you can ever grow and improve from your past.

What kind of psychological damage do you think this will create?

You might as well take a boot and step all over their self-esteem.

I have become accustomed to brushing off what other people say about my children and about my parenting. However, I've never been one to remain silent. 

I wish I could raise my children in the country as I tried to do when they were first born but I believe my husband has a right to not sit in traffic for three hours a day. Three hours that he could be spending with his family. So we moved closer to where my husband has to work cutting his commute time, and increasing family time. I fear I made a huge mistake!

I had a neighbor tell me that they are worried my kids will get hit by a car. We live at the end of a dead end road. Hit by a car - while playing in their yard? Umm. I guess that's a risk I'm willing to take? The only time my children are in the road is when we have to cross the street to the sidewalk and I am with them. Yes, I let my six year old cross the dead end road to the sidewalk by herself with me watching from the front porch. Before she goes out we go over the steps. Stop. Look and listen. Then cross quickly, no stopping to talk to a friend, hit your sister or pick something up. I actually questioned my free range thinking about teaching my daughter to cross the street safely and what I came to conclude is that if the bus company thinks my daughter is old enough to cross the street then apparently I'm not alone in my thinking.

One of her favorite science concoctions lemon juice mixed with baking soda.

To me it makes no clear sense. I have neighbors that don't even let their children play in their yard. They drive them to the park that is a half mile away. That is their choice and I respect their decision and their parental concern. So I ask, that they respect my decision in letting my children play outside (especially my Aspergian daughter who would live outside if I let her). They are being watched. However, I let my children climb walls, and I let them do chemistry experiments with my supervision because I know that soon enough they will try these without me. So at least I can show them how to do it safely in hopes that if they decide to try it themselves that they will use the safety techniques I taught them.

In my mind, walls are to be walked and I am going to let my kids be kids and act like kids as long as they are kids because childhood is gone way too quickly.

My daughters playing on rock walls.

If You Give an Aspie an Electronic...

Have you ever read one of Laura Numeroff's children's book If You Give a Mouse a Cookie? She has many other similarly related themed children's books such as If You Give a Pig a Pancake, If You Give a Moose a Muffin, If You Give a Cat a Cupcake, etc. She has over 30 published children's books.


Anyway, I couldn't help but think of her book If You Give a Mouse a Cookie, because it reads, "If you give a mouse a cookie, he is going to want some milk." The mouse goes on to ask for a mirror to check for a milk mustache, followed by scissors to trim his hair and continues on and on. The story always makes me smile and laugh because the mouse is a perfect example of how children behave and their endless need for us.

The other day, I brought my three kids to see my parents at their home out in the country. My middle child ran to give her grandparents hugs, my youngest ran to hug the dog and my little Aspie went to the den where it is quiet and took out a toy phone. I didn't think much of it until I went to check on her and found the phone and a toy radio dissected. When I asked what she was doing, she asked if I had a screw driver. She just turned six. SIX! Jokingly I said, "Maybe I should get you some goggles too?" She, of course, said with a straight face, "Oh yes, that's a good idea. Get me some of those too."

It took me a second to realize, my sarcasm is lost on her. So I sat down and told her that mommy was kidding. That I didn't have goggles. Without hesitation she told me not to worry because Grandpa does in the shed. She quickly got up and ran outside to the shed to grab a screw driver and goggles. I sat there dumbfounded. She always amazes me. I would have never thought to unscrew a toy phone to disconnect the wires only to see how the thing worked.

I sat there contemplating -
Should I stop her from taking apart the toys?
Is it dangerous?
Why should I stomp on her curiosity?

So I let her tinker.

I wonder what will happen in five or ten years when I give her a microscope?
So the story would then read If you give Mary a microscope, she is going to want some slides?! LOL
Moments like these I treasure.

Dear Mean People

It saddens me to new depths to read the hate mail sent to Canadian Brenda Millson regarding her autistic grandson Max Begley. Click the link to read it http://www.dailymail.co.uk/news/article-2397412/Autistic-boy-Max-Begley-receives-hate-letter-Euthanize-donate-non-retarded-body-parts.html.

Unfortunately, I am no stranger to hearing such evil thoughts (although no one has ever suggested harm to my children).  I share this personal story to let Max’s mom and Grandmother know that they are not alone. Unfortunately, many people will not learn more than the word “autism.” I urge people to know more than just the word by writing and speaking on autism related issues. My hope is that someday people will respect people with autism.

Here is my story…

Approximately, eight months ago my husband and I had to move our family of five (us and three kids).  We almost settled for a house that was on the opposite side of the state over an hour from any friends or family when at the last moment we found a four bedroom just on the opposite side of the town that we currently lived.  It was a good size home for us but has barely any yard. I tried to be optimistic about it, since it is near a park. I tried to reassure myself that we can just simply walk to the park if they need to stretch their legs. However, life set in and we are lucky to go for a walk twice a week.

Since we moved in during December there was not much communication with anyone in the neighborhood. I always eagerly greeted people and introduced myself but not many seemed interested to continue a conversation.  Thankfully, as the months went by and I had to lug three children up the street to the bus stop I eventually met people.

With spring came kids running from house to house. It was a friendly site to see, making me reminisce growing up in the Litchfield hills of Connecticut, playing with all the neighborhood kids on the local green. I thought we had finally found a place that we fit. Until a simple incident at the end of March brought a staunch realization, we hadn’t made friends we were merely being tolerated.

This is my side of the story…

I pulled into the driveway to see my husband and my two youngest children playing on the patio. I got out of my van to see my five year old daughter come running across the front of neighbor’s lawn crying. She buried her face in my belly. In between sobs, she told me her ball accidentally went over the fence. So her father told her to go ask for it back.  However, as she stood at the neighbor’s door waiting to explain that she just simply needed her ball back, she was screamed at and the door was slammed.  Meanwhile my husband has brought the younger two inside. I tried ushering her inside with everyone so I could calm her down and talk to her. Thankfully I got her inside just in time. However I wasn’t as lucky. The lady neighbor came marching outside yelling, “I’ll give you the fucking ball back. I should pop the damn thing! You should shut your fucking kids up. All they do is fucking scream! You know I’m trying to work right here.” [pointing to an open window and throwing the ball over the fence]

I could of swore right back, but my parents have raised me on the belief that if you have nothing nice to say then don’t say anything at all.  I have personally never been one to not say something, so I merely suggested, “Then you better shut your window because we aren’t going anywhere anytime soon.”  I went back inside and consoled my daughter.  She kept asking over and over again why someone would yell at her and why someone would use bad words at mommy.

Soon after, I calmed her I went to my bedroom to unravel the tense mess that I had become. These were the same people that had helped plow our driveway during the blizzard. Had I been that naïve? Was my family really that disruptive to the community? My head swirled with what ifs and maybe I should thoughts. Ultimately, I knew the answer. I tried to respect the community by never letting my kids outside before 9am and always having them back indoors by 6:30pm. I try to keep the noise low or I bring them inside, but they are children. We moved to a street that has tons of children thinking that our kids could play outside and be kids.

Meanwhile, I heard a knock at the door and my husband talking to her husband telling him it was okay. WHAT?! I thought to myself.

It is NOT OKAY! It is not okay for people to swear at my kids or me. It is NOT okay to slam a door and scream at a child that is simply asking for her ball back.

Could the situation have been handled better? Sure. Could my husband have walked her over? Maybe, but then he would’ve had to bring all three kids to witness her wrath.

I can’t believe that people can be so mean. The letter that this grandmother and mother had to read is heartbreaking to me because it reinforces that people are mean and cowardly.

Did the woman that wrote the note sign her name? – No, of course not. Did my neighbor come and apologize? No, she sent her husband.

There are some very valuable lessons that we should all learn, if you can’t say it or display it at school or church then you should not say it or display it anywhere. Some thoughts should stay locked in your head. Never, respond when angry. Wait until you calm down. Try to remember what it was like when you were a kid. Most importantly, know that you are no better than anyone else. You have no right to suggest harm or silence on anyone.
This kind of behavior should not be tolerated. Let's join with Kevin Healey http://www.autism-campaign.co.uk/autism-bullying-campaign/ and fight for stricter laws against bullies and hate crimes such as these.

To the people that have acted in hurtful mean manner: If you want quiet – move to any island or the woods. Based on your actions and words, I don’t think society will miss your mean spirited ways. You complain of a little noise, while you go around inflicting psychological and emotional turmoil.