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.

Extended School Year and Summer Programs

Here we are in July and now that everyone is on summer break we have a whole new host of issues to face.  Within my own family it means getting used to adjusting schedules, which never goes well. Trying to adapt to the summer extended school year, and programs to keep the kids busy and me sane.  For those of you that didn’t get extended school year for your special needs child – don’t be jealous.  All my daughter will be receiving through the school system is a thirty minute social skills group once a week.  That’s right – 30 minutes! Really, what is the point?

This means that I have to fight to get her dressed and fed then get all three of my kids out to the bus stop.  So my daughter can be driven around town for a half an hour to finally get to school for a thirty minute group session.  Then she has be driven back home on the bus, at which point she will thrash and scream at me because she will be mad that they didn’t give her an opportunity to play on the playground.

I probably wouldn’t be so frustrated and would be more appreciative of the 30 minute group if I was told about it before I went out of my way to sign her and her sister up for ballet and gymnastics (per their request). You see the school system “asks” you if the extended program will work for you and I could say no but then they get the opportunity to say I refused services for my daughter. I won’t let that happen. “Monday for 30 minutes? Oh yes, Monday is great.” I reply when they tell me they are going to “offer” a social skills group to my daughter.  I don’t bother telling them that now my children will now be forced to miss half of the programs that they were signed up for this summer. I save my breath and try to explain to my husband why I smiled and accepted the “offer.” He is confused. “But you said yes? You seemed pleased that she will get something? Why don’t you ask for another day that works for us? he unknowingly says to me. “Oh dear, let me explain something to you, the special education system doesn’t revolve around us and our plans. It is a strictly ‘take it or leave it’ option. If I don’t “take it” there will be huge consequences. (ie. Mom refused services therefore we don’t need to offer them anymore.)

The team of professionals that have no idea what it is like to be a mom of a special needs child, has no idea that I have spent hours searching for a town with a Park and Recreation Department that will “accept” my daughter. Based on her age and her high-functioning, she doesn’t qualify for any special needs camps or summer programs through the local ARC. However, I often find I can’t send her to a regular camp because they are not knowledgeable about sensory needs and I fear what they would do with her if a meltdown ensued.

Instead, I signed her and her sister up for thirty minute classes of ballet and gymnastics at a neighboring town, at which I have to stay for the duration of the class with my screaming nonverbal son in tow and closely watch for any inkling of a meltdown. Last year I was lucky to get her into the ballet class and she made it three quarters of the summer through before melting down and not wanting to go back.

This years first class didn't go well. I arrived ten minutes early so I could change my son and give the girls a few minutes to run off some energy before having to be calm and listen.  Everything was going smoothly until someone had to pee and the building was locked.  The teacher showed up a minute before class was supposed to start to unlock the door.  This gave my daughter just enough time to get in the bathroom door before her bladder had enough. So I spent the first 20 minutes of class mopping the floor and washing up my child. Then the rest of the class was spent convincing my daughter to participate. She kept roaming the perimeter of the class or walking out of it. I fear that I have wasted my money since I had to pay for the entire summer up front.

Anyway, after talking to my friends, I realized that my daughter wasn't the only one left out of programs. There is hardly anything in town for ages 1-5. There isn't much for parents that have more than one child because most groups require you help your child which leaves the other unattended.  There isn't anything for high-functioning kids on the spectrum.  So I decided to start a new group, where no one will be left out.  (What can I say, if I see a need, I feel obligated to fill it.) I'm going to call it Activities 4 All Abilities.  It will provide an art class from 10-10:45am. Then, 11:00-11:45 will be a sensory fun/movement class.  While the class is going on, my husband has been gracious enough to mind siblings or participants that aren't quite sure that they want to participate. Parents still need to stay to help but at least their will be extra hands. I am only charging $3 per class to cover the cost of juice boxes, snacks, and art supplies. I hope it goes well. At least if my daughters decide to roam out of class I know where they will be.

My Other Blog

Until I get this blog fully up and running, I wanted to let you know that my old blog is http://tlrofct.blogspot.com/  It has a lot of great links and resources for special education and autism.

Leslie and the Terrible, Horrible, No Good, Very Bad Day

Leslie and the Terrible, Horrible, No Good Very Bad Day

When I was young, there was one book that I adored more than most – Alexander and the Terrible, Horrible, No Good Very Bad Day by Judith Viorst.  Alexander wakes up with gum in his hair and trips on his skateboard.  Later in the book the shoe store doesn’t have the “cool shoes” in his size so he gets plain ones. The story goes on with a bunch of small things adding up to cause Alexander to want to move to Australia.

Today, I feel like moving to Australia. I feel like Alexander does. I just want to up and move away where I can’t be bothered. 

So what happened? Well twice in the past week I have had two different family members visit from out-of-state and tell me that they plan on visiting on said day.  So I frantically clean my house and try to maintain a clean house with three kids under the age of 6, while running a magazine, planning two birthday parties, and starting a new organization. You know because I have nothing to do. (Do not get me wrong, I am not complaining about my busy schedule. I love my busy schedule. I thrive when busy but if I rearrange my schedule for you – I expect you to be there.)

You see, most of the world sees me as a writer, a public speaker and the Editor of a magazine – but my family sees me as “Just Leslie.”  This does not offend me. It just is. In fact it keeps me in check.  It reminds me of how far I have come and how hard I have worked.

Anyway, I love visits. I love family and friends. However, many do not seem to be aware of the monkey wrench that they throw into our lives when they want to “just drop in.”  When I was single this was great. I just went with the flow of whatever life brought me.  This is not the case anymore.  My hubby and my kids thrive on structure and go into panic mode when plans change. 

So when someone tells me, “Hey, I’m in state and want to stop by tomorrow after lunch.”  I expect them to be here sometime between noon and 5 pm.  However, twice I have been told that they are going to “swing by” for a visit and twice these two different people didn’t show at all.  To me this is just downright rude.  In todays’ day and age where almost everyone has a phone with a clock on it attached to them, there is no reason why you can’t call and cancel and no reason why you can’t keep track of the time. 

The other aggravating factor for me is that they let my kids down. If I start frantically cleaning, they know someone is coming over. There is no hiding it. They are young but clever. So even if I try to hide that so-and-so is going to be visiting it eventually comes out.  So twice I have had to deal with my kids crying because we stayed home all day long and they didn’t show.

Then – “Can I stop by another time?” Well, what is another time?  Believe it or not I don’t sit around twiddling my thumbs waiting for people to just “stop by.” 

It drives me insane when people only think of themselves. In this case, in both cases, they were working their visit around what worked for them and their vacationing activities.  Really?!! I don’t have three young kids to worry about, which means nap times and bus schedules to take into consideration.  Oh and there is the whole autism factor. My five year old has Asperger’s and my baby boy is not diagnosed with anything yet but I have my concerns.  They depend on the plan for the day and when the plan doesn’t go accordingly then we have major meltdowns.  My middle child is an NT and is overtly emotional.  So she cries from missing the person and the disappointment of waiting all day to give them the picture she drew only to find out they aren’t coming.  Me, well, I am offended that I don’t rank high enough on their Richter scale for them to keep their plans with me and pissed off that they made my kids cry.

This is why, after dealing with the kids crying, I agree with Alexander and think I should just move to Australia.

Wholeness and Completion Issues

If your child or a student that you teach, seems defiant or like they "just won't listen," then you need to read this blog post.

When my daughter, (who has Asperger's Syndrome), was a toddler I had concerns that she was deaf at times because of the way she would ignore me when her name was called.

Me: "Mary."

Me: "Mary."

Me: "MARY."

Me: "MARYYY."

Me: "MARRRRRRYYYYYYYYY!"

Mary: "What." {Expressionless, without even looking up}

 

So I did what any concerned parent would do, I talked to her pediatrician who scheduled a hearing test at CCMC (CT Children's Medical Center). Her hearing was perfect.

Completion Issues and Routines

I have learned very much from my daughter. Even after years of being an educator, it amazes me the information that I have yet to learn.

As soon as Mary was able to walk, (which in her case wasn't until 2 and half or a little later), I noticed that she would shut every door that was open. It drove me crazy because I was worried that she would smash her little fingers. I was unaware that what she saw was something "incomplete." In her eyes, that door HAD to be shut. This was perhaps the first completion issue that Mary presented.

 

Mary has the ability to envision entire scenarios before they happen. Also, until she plays out the entire scenario, she has the innate ability to focus so intently that she can tune everything else out. This is sometimes not just an envisioned scenario but can also be an action that she is accustomed to doing. In either case, you cannot interrupt! Saying or screaming her name will not stop her, and if you physically try to stop her from completing the action or scenario then a major melt down will occur. This is normal for children with sensory issues and autistics. It is commonly referred to as a "completion issue." To many people with autism, things have a distinct shape. A ball is a circle (to a child) or a sphere (to an adult). When this shape is altered it creates a certain amount of anxiety and/or discomfort because the image that they are used to is dissimilar. Any change, be it change of plans or a change in imagery is unsettling to a child with autism. Just like a change in scientific materials will undoubtedly bring about a different concluding result in an experiment, so will a change in plans or imagery bring about a different emotional response in an autistic person.

 

Routines are extremely important to a person with Asperger's Syndrome. For Mary, part of her weekday routine is walking down the sidewalk to her bus stop. Day after day, I would try to stop her before the end of the sidewalk to keep her away from the road as a safety precaution. Her defiance continued to grow. Instead of walking out with me, she would bolt out the front door in hopes of completing her path to the school bus before I could prevent her from finishing. However, I was unaware that what she was doing wasn't defiance. It was her "completion issue."

To Mary, she had a path and a routine that must be completed before her bus got there. If she didn't complete her path then who knew what would happen next. Autistics need a routine for comfort, safety and security. With all of their sensory issues, they often feel like they don't have much control over their daily lives, which is quite aggravating.

So try to become creatures of habit. I'm not saying set a schedule every day and stick to it, because life changes. However, you can give your kid a great sense of security by creating some routines throughout the day. Trust me; it relieves a lot of anxiety and behavioral outbursts. I will admit that when someone told me to make a picture schedule for Mary at home, I didn't want to even consider it. I admit that schedules are imperative to achieve peace and tranquility, but I also encourage "wiggle room." For instance, have "open play time" (kids can play anything alone or with someone) or "out-of-the-house time," (which can be going to the grocery store or going to the park). At first, I thought I had to plan every second of everyday, which to me is just not practical. Life changes and I want my daughter to know that.

 

So what I have done, that works for us is to have a "wake up routine," and a "bedtime routine."

Our WAKE-UP ROUTINE

For my family, the kids wake me up at 5:30 almost every day.  I tell the girls to go use the bathroom and get dressed. While they get dressed, I change the baby's diaper and get him dressed for the day. When I am done changing the baby, I go into the girls' room and check to make sure that their clothes match and that the clothes they chose are appropriate for the weather. Then I tell them to brush their teeth. Once teeth are brushed and clothes are approved they are let downstairs. (I have gated the top of my stairs.)

When we get downstairs, Mary has a cup of warm chocolate milk and watches one kid-approved show from our Netflix Instant Queue. Meanwhile, I set up the coffee maker and feed the baby. After the baby is fed, mommy has her coffee and watches the news while the girls eat breakfast. Then we have what Mary has come to call "open play time." The girls can play what they want. Around, ten in the morning I pull out the crafts and do something crafty with them. It can be something as simple as folding a piece of construction paper and letting them use my stamps to make a card for someone; playing with play dough or floam; or something more constructive and planned like the cookie monster foam crafts that we made this morning. At eleven my cell phone alarm goes off to remind us to clean up our craft and make room for lunch. I make lunch. We eat. Get shoes on and begin the battle to brush hair. So we can make it outside by 12:20 to stand at the edge of the road to wait for the bus.

After school, she has a snack and has "open play." At 4:30 my cell phone alarm goes off again to remind me to start making dinner if I haven't started yet. So if the girls are playing outside they know that they have to come inside, while mommy cooks. We eat dinner between 5:30 and 6. Then, bath time, a Backyardigans episode, brush teeth, use potty, read one story, tuck in the girls, lights out then say prayers, and then I sing a certain order of lullabies until they are both asleep.

 

I highly recommend timers. There is no arguing with the timer. It is concrete. It has helped in so many ways. We even use the microwave timer if one of the girls wants a turn with what the other sibling has. If you don't have a timer on your, stove, your microwave or your cell phone - buy one. You'll thank me later. I have become used to my cell phone since it is always on me if I'm at home, at work, at the park, etc. It is my built in timer.

 

Whole and Half

Most, if not all autistics, have aversions to food. In other words, they are extremely picky eaters usually because of their sensory issues. However, you can help alleviate some of the food tantrums by understanding this next issue.

 

One of the worldwide habits that parents do for their young children is cut their food. Why? To avoid choking. It is just a natural occurrence at any dinner table to see a parent cutting a kid's dinner up for them.

However, cutting up food to some kids with autism creates a problem. For instance, cutting a strawberry in half can be disturbing because the fruit is incomplete. So now the child is not only struggling with the temperature of the strawberry (was it refrigerated or room temperature) and the texture (all those tiny little seeds), but now they have to deal with the food not being whole. This of course leads back to completion issues. They have an image of what a strawberry should look like and you have altered that image. This provokes anxiety and frustration.

In no way, am I suggesting that you stop cutting your child's food. However, if they are old enough and have a full set of teeth, you might want to consider it.

 

In conclusion, there is light at the end of the tunnel. This completion issue has many benefits. For instance, Mary knows that she cannot step into the street until the bus door is open. Once I learned about completion issues, I was amazed to learn that Mary could run full speed up the sidewalk but she would stop dead in her tracks when she got to the edge of the road. Why? Because the path was complete and she couldn't move until the next task, which is waiting for the bus driver to open her door. My neighbor asked my one day, "Aren't you scared that she'll run into the road?" I confidently smiled and said, "I know she won't." She said, "How can you be so certain?" I said, "Because that would break the routine. She has programmed herself to know that she takes 6 steps out the front door, twelve to the left and fifteen straight and she can't move until the bus door is open." Mary has never once, stepped into the road until that bus door is open. Oh, and in case I haven’t mentioned it - every autistic person is differently affected. I am just trying to shed some light on the issues that I have seen and lived first hand so that other parents and educators might be able to understand why an outburst or meltdown occurred and possibly prevent one next time.