Autism + 10 Coping Skills

Ten Coping Skills 

I Learned By Accident

Because I L<3VE 

My child, challenged by Autism 

With Meaning & Purpose

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Eye contact is optional - 1

Teach them their name - 2

Learn how to cope with them running off - 3 (A)

If possible, teach them to stop running off - 3 (B)

Visual Schedules - 4

Wait Time - 5

Let your kid be silly, even in public - 6

Build a sensory box together - 7

Use Transition Warnings - 8

Let them spin or self-soothe 

when it is appropriate - 9

Love them unconditionally - 10

Theory of the Mind vs. Theory of the Heart

"Theory of mind refers to the notion that many autistic individuals do not understand that other people have their own plans, thoughts, and points of view. Furthermore, it appears that they have difficulty understanding other people's beliefs, attitudes, and emotions." - Stephen M. Edelson, Ph.D.

The Theory of Heart as it relates to science has to do with the actual heart and how it works.
   
When I ponder Autism, and my own thoughts and feelings about the Theory of the Mind and the Theory of the Heart, I take that same knowledge, and put it into another context, simply for my own sanity and survival.  

For me the Theory of the Mind, as it relates to parenting children challenged by Autism, is that everything you ever, ever, and I do mean EVER instinctively thought you would do to raise a child, is thrown out the door once you realize your child has Autism.  Parenting a child on the Autism Spectrum, almost requires an adult to reformat their brain for parenting. 

Picture taking an old desktop computer, and wiping it clean, then coding it all on your own, with or without the right training.  Sometimes I feel like I am learning to parent the same way I used to teach a computer to take commands using DOS.  If you never had the honor of learning DOS in high school like I did, it's a series of codes and symbols you put into the computer to give it a command, to actually start up a document, or to create an image on the screen.  

Computers today save us all that work.  You can click on an icon or image, and instantly have what you need at your disposal.  Parenting for most people, is a lot like computers today.  You can use the instincts, body language, and everything obvious about your child to just naturally understand how to parent them. 

Parenting a child challenged by Autism, or other similar disabilities, is like re-coding your brain for parenting.  That is why I came up with my own brief messages to send myself in order to cope with the stress of my days with my children.

My definition of the Theory of the Mind, is that you have to learn to cope with raising your child by learning step by step what has to be done in different behaviors and situations.  It's like a math equation for me.  A + B = C.  NOT that simple, but along those lines.  For example, when my child throws a fit/behavior in a grocery store, I know I'm going to either (1) remove the audience, (2) take away a reward, (3) take him to the bathroom to have a little chat about how you behave in a grocery store.  Then try again.  ALWAYS, I try again.  I don't like giving up in front of my son.  

The Theory of the Heart, is how I choose to love my child.  Some ideas are (1) making eye contact all the time is not a requirement, (2) being able to say "I love you" on his own, is no longer important, (3) when he can spin or move in public to self-soothe in a socially appropriate way, I'm unbelievably proud of him! 

The Theory of the Mind vs. Theory of the Heart, is the daily decisions I make about how I'm going to respond to my son.  It's a coping skill I find myself telling myself.  Kind of like "A + B = C", but a little bit altered.  If you want to put it into math terms it's more like "Theory of the Mind + Theory of the Heart = 1".  It's written like a fraction on purpose.  I want the two ideas to become cohesive, balancing each other out, to have a oneness and a unity with my child.

When I attempt to cope with something I am facing with him, whatever it be - a behavior, a sensory moment, over stimulation, the frustration of not understanding social cues - I get to work by trying to balance these things out.  I stop thinking about the way parenting should be for me, and start thinking about what I can do right then to benefit my child so that we don't have these problems in the future.

I take most of my discipline theories from the idea that after you discipline a child, you should always show an outpouring of love towards them.  That means, when I take my son aside, and have to follow my parenting steps, 1, 2, & 3 and try to explain to him everything he should be doing, and why - I show love to him in a way that I know he can accept it, not how I want it to be.  I show him love the way he can receive it.  

Doing this means that as I speak to him I'll look to the side, avoid eye contact, and tell him I love him.  I'll hug him.  I'll rub his cheek with the back of my hand because he likes the scrape of my worn, wrinkled hands against his soft, young cheek.  I'll hug him tight, tight, tight, until he starts to laugh, and then we'll move on.  

You learn amazing things when you parent a child challenged by Autism.  You can discover how much love there is in the world, and even more importantly, within yourself.  This journey is the opportunity to become a better person, and parent, than you ever knew you were capable of being.  Because parenting a child with Autism is an opportunity to become one of the greatest parents that has ever lived on this planet.  It's the chance to become 1 with you and your child.  

Accountability VS. Immunizations

Lately in the news I've been hearing quite a bit about the Measles and how someone in Disneyland got the Measles as well as somewhere else in the world. I don't really follow it because quite frankly, that's the kind of thing that's just a little bit too depressing for me.  Have you seen that movie with Gwenyth Paltrow and Matt Damon?  It's called Contagion.  If you really want to get freaked out about the spread of disease, check that one out.  It'll make you think twice about everything, and anything, you do to risk getting sick. 

Then today there was another article posted about people who society has deemed accountable for things like whether or not you should vaccinate your child to avoid them getting something like, oh, say, Autism?   

I've been hearing about this theory since I graduated college in 2004.  I consider it to be pretty similar to this theory "You can get cancer from drinking water".  Autism is hard.  I get it.  I live with it.  It may be caused by something in our environment.  It may come from a gene, in fact, it probably does.  I've heard rumors to that effect many times now, even read articles about it, but it seems like society has not really embraced that idea, so it always fades out.

The facts for the parent of a child with Autism, versus someone else, is that you have to live with it, and somehow cope with it.  Every parent who enters that "arena" of Autism and starts that battle, comes from a different angle, and a different perspective.  For me, I had worked as a Special Education Teacher, and knew the signs of Autism as well as other disabilities.  So, when my son was born premature - which can also cause disabilities - I was looking for the warning signs, and I saw them.

There was no solid eye contact.  There was no affect when he smiled at me. There was no visible response to hearing his name. No one would test him until he was a certain age, in a certain state, etc..  Each story is different about how a parent finds out.  (Finding Out.)  EVERY parent, at some point, will grieve this "change" in their child.  At least, I believe they should, so you can get up and start to focus on your child instead of "who did what wrong".  Remember that old saying?  When you point the finger of blame at someone else, you're also pointing four fingers back at someone else?  Who? YOU!   

When you vaccinate a child, you risk a lot of things.  Trauma among one of them.  Could the trauma of getting a shot when you're one day old cause Autism?  Who knows!?!  Could getting multiple immunizations cause Autism? There are theories out there that support it.  But there are a lot of other diseases out there that immunizations prevent.  And honestly, I would much rather have my child live with Autism from getting immunized (if that theory is even true) than to watch my child suffer or die from polio or suffer through measles and live.  You can always learn from the past, but where we're living right now, is the present.  

Today, is our accountability as parents.  I think of that every day with my child.  EVERY day is my chance to try harder, to figure things out better, to be a better mother to my son.  I pray for it.  I hope for it.  I educate myself so I can do better at parenting a child challenged by Autism.  

The problem I see society facing with Autism is accountability.  People have lost sight of the greatest reward - of taking accountability for our children - regardless of their ability or dis-ability.   Who knows why they end up the way they do, or why they have the challenges they face?  The majority of our children's challenges will always be without measure and unexplained.  The best way I believe we can face these challenges is by working together, not by wasting our time blaming someone else.  

The experience of being a good parent can be a good choice or not, but the facts are, the choice is yours.  Make a good choice today, and pay it forward, so that the lives of all people affected by Autism and other disabilities can be better, and more meaningful, and full of hope.   

Handling the Holidays

Dear Families,

If I could write all of you a Christmas letter that truly helped the families of those challenged by Autism, it would go something like this. 

Handling the Holidays with an child that's challenged by Autism, can really be a lot to tote around.  Already, Thanksgiving was a lot to handle this year.  After being presented a meal my child surprisingly ate, we proceeded to have pie, play games, laugh, talk and stay up late.  It was a great day, and a success by my personal measure.  Granted, I view my successes as a parent through the lens of Autism, and therefore, it was fine for me and my little fam.

There are some tips I'm learning from year to year that help me to have more success in managing the holidays for my child when he's home so much from the structure of a typical school day.  

Some of the things which help are talking to him and preparing him before the end of school.  I like to do a countdown with him towards events like this, and we'll discuss how it's 5, then 4 and so on until school stops for a few weeks.  Then, we look at the calendar, and I show him the day that he's going back to school.  This might be considered a transition warning, and I find it to be very successful for him, and it helps me teach him how to manage his stress about this change.

There are some other things around my house that I have up and leave up all year, but utilize more during holidays and/or time periods when my child has more behaviors related to Autism.  One of them is a visual schedule which one of his teacher's helped me make years ago using Boardmaker icons.  This is a software program which many Speech Therapists, Special Education Teachers, and School Districts should have access too.  If the district you're in doesn't use Boardmaker Software for some reason, just ask for help creating what's called a "Visual Schedule". Here's mine. 

I have broken mine up by day and night.  If you look at it, I don't show the break very well, but it makes sense to my child, and that's all that matters to me.  The day or morning is indicated by the full sun.  The night, by the moon and star.  After the sun, I've put pictures of what my child is supposed to do in order to get ready for the day.  After the moon, it is his nighttime routine before bed.  My son knows that everything missing is taken care of at school.  

The second picture I have up, is of the envelopes I've used to organize these icons.  I have them hanging from the wall with tacks.  It's divided by morning, afternoon, evening and Saturday.  When my child has more behaviors or challenges I pull out the extra icons in there and I make a schedule for him which I feel keeps him on track.  Thankfully, his wonderful teachers help me make and laminate icons when needed.  

During breaks from school for holidays or being home sick, I separate the icons better and ad in a row of icons of what happens during the afternoon.  Those icons include things like "eat lunch, take a nap, play outside, play with my sister" and more.

The board I used to put it all onto is actually a cork board that most people use to just hang notes or pictures on.  His teacher at the time had the budget to give me some Velcro to use when I first made this visual schedule.  Then, I bought I went ahead and bought the Velcro myself and attached it to them when needed.  I tend to prefer putting the harder Velcro against the actual board, and then I put the soft Velcro onto the back of the icon.  It's easier to take off the icons and move them around that way.  

After some time I got frustrated with the visual schedule I had and bought a dry erase board that I was going to adhere the Velcro to.  The dry erase board sat in my house for quite some time.  My son showed interest in it one day and asked me to put his schedule onto the dry erase board.  He expressed interest in having two schedules.  Since most of what I do with my son is to encourage his progress, I went ahead and made a second visual schedule which hangs outside of his room.  Here is that visual schedule.  

 

My children enjoyed watching me make it so much, that they wanted to take care of writing the nighttime routine.  When you look at this schedule, to the left I put a blank spot where I normally put the time.  I made it color coordinated on purpose to help my children read each line separately, and they love it!  I've also included things like "watch cartoons" and "rewards".  My child is young enough that he works for rewards during the day.  I don't have a formal token board for him, but I have an accountability system that we have set up about his behavior at school.  I work with the one his teacher has created, and how he does at school affects how man, and what kinds, of rewards he gets when he comes home.  It makes him agitated sometimes, but being consistent with him has helped him have excellent progress in fighting against the challenges caused by Autism. 

When my children are not in school, and struggling with "what do I do" without my friends, teachers, etc, I offer structure and routine to their lives by having these visual schedules.  We don't always follow them perfectly, but having them to reference does seem to minimize the amount of behaviors they have, and it helps me add purpose and meaning to each day we spend together.

Another item we have in the house is a visual countdown for the upcoming holiday.  This year my sons' teacher helped him make one before I even had to at home, so that was a huge help.  It's adorable, and every day a chain is taken off to help us all countdown to the upcoming holiday, which is Christmas.  Here is the fabulous countdown made by his wonderful teacher.  :)

It has a cute poem at the top, and my son has requested for it to be hung in his room near his other visual schedules.  

Much of what I do to prepare my child for the holidays comes from the successes and failures of the previous year.  I try to not let the challenges of raising a child with Autism control my holidays, but I do let it affect what I do to guarantee his happiness.  We can't always do the "typical things" some families get to do, but we have a rewarding experience that brings us closer as a family, and in the end, that is what matters most to me, and so it is what matters most to my children.  

The holidays can be such a special time of year to bond as a family. I hope that this little bit of advice helps all of you challenged by Autism to have a bright, and happy holidays.  

Happy Holidays!

Love,
me

Reading in the dark

I had a GREAT time with my child the other night.

We were on our way to bed the other night, and it was time to read books, when my child (who is afraid of the dark) got the BRILLIANT idea that we should read in the dark!

We pulled out some glow in the dark sticks which we seem to always have in the house, and some books that were primarily black and white, and began to read.

One of the books we had chosen was "One Cool Friend" written by Toni Buzzeo and illustrated by David Small.  This was a book we had randomly chosen from the picture book section of our local library, and is a Caldecott Medal Honor book for the year 2013.   

 (http://thereisabookforthat.files.wordpress.com/2012/04/cover-one-cool-friend.jpg)

As we sat on our bed, my children and I took out our brand new glow in the dark sticks, snapped their outer, plastic covers, and shook them apart.  Then we proceed to wait until they glowed, and then the excitement began.

(http://www.glowwithus.com/images/206.jpg)

Using the glow in the dark sticks we traced the words on the page and used the sticks to also follow along.  As we read the book we used the glow in the dark sticks like a flashlight to look at the pictures and images on the pages as well and talked about what we could and could not see easily on the page with the limited, colorful light.

There was some frustration on the part of both me and my kids.  We traded around the glow in the dark sticks a few times, and tried out different colors that we discovered could illuminate better light than others. The trading of the sticks and the alteration of the colors gave us a chance to deal with sharing, feelings, discovering colors, and a good discussion about the use of light and dark.  

For a lot of parents the interpretation of this experience would be very different than it might be for me.  As I watched my children deal with the experience of reading a book in the dark, with only  the light of a glow in the dark stick, I realized I was truly giving them a fun and meaningful sensory experience.  An experience that I later realized could help them learn to cope with their fear of the dark, their anxiety and worry about reading, and the actual sensation of teaching their eyes to see in the dark, when that has previously frightened them.  

I can only imagine the synapses that were working in their minds, and perhaps for the first time ever in their young lives.  Thankfully the story was a HUGE hit, and we loved the HILARIOUS ending, and the story kept their attention the entire time and made them WANT to finish which for them meant coping with the discomfort of having a new sensory experience that they had not previously had before in their young lives.

The response afterwards from both of my children was that they loved reading it in the dark, and wanted to do it again.  I'm proud of my young children, and excited for the new memories we made as a family by taking the chance to leap into the dark, and read!  

The Unspoken Family Rules

This past weekend, as I pondered some of the challenges I have raising my children, I realized that one of the things that I have a hard time with is something one of my college professors called "unspoken rules".  They're just what they sound like.  The rules you live by, but no one speaks out loud.

They're instinctive, clear, strong, usually have a large impact on your life, but for some reason, people just struggle to say them out loud. They're just there - you know it, your body knows it, and your mind knows it.  It's almost like how you know that blood flows through your veins, but you don't see it on a daily basis.  

When I was trying to decide how to parent my child that is challenged by Autism, I researched the multiple parenting styles out there.  I found that none of them individually or specifically met my needs, but that rather, a combination of them met my needs as a parent.  This weekend as I found myself pondering how I'm doing with being "permissive, uninvolved, authoritative, and authoritarian" I realized I'm doing a good job of being all of them appropriately with my child.  Yet, there was this sense that something else was missing. Something else deep in my soul was making it hard for me to believe I was doing a good, no a GREAT job, of parenting my child on the Autism Spectrum. 

Then it hit me.  I was breaking all of my unspoken rules by how I was parenting my Autistic child.  I was parenting him the way he needed to be parented rather than the way I was raised, or was "supposed" to be parenting my child.

Right then and there, I began to redefine for myself what rules I wanted to follow in my parenting.  I knew I had to somehow eliminate some of the unspoken rules in my life and that I had to ignore them if I couldn't get rid of them.  

The trouble with this is that unspoken rules can be as ingrained into a person as much as their favorite color, sport, food, etc.  They are part of the emotional DNA of our bodies and our lives.  Often they subconsciously have affected who you've dated, who you've married, how you parent, and many of the other big life decisions a person makes in life.  So, eliminating them is a little bit like cutting off a lifeline.

I realized right then that this would be a hard task to unravel.  So, I began to create my own list of "unspoken rules" for parents of children diagnosed with Autism.  It is a list I realized I repeat to myself whenever doubt or despair gets me down, and that if I can continue to teach them to myself, in a positive way, that I can actually make them into more powerful thoughts than the older "unspoken rules" from my childhood.  

• My child can have a behavior in public, as long as I know how to help him work through it.
• It's okay to give my child rewards for what other parents consider "typical" behavior. For example, letting my child watch TV while he eats because he is actually sitting at the table while he eats.  Buying him a treat at the grocery store because this time, he didn't run off on me.  Giving him a reward for being GREAT on the first day of school. 
• It's okay that other people don't understand my child.  I do.
• My child is lovable, even when he's hand flapping, spinning, or running away from me (as long as he's less than 20 feet away still).  
• My child knows his name now, and that has changed our world.
• My child has learned to make eye contact, and he's a pro at it!
• My child has sensory challenges, and he is my hero every time he tries to work through it on his own.

Part of why I share this is that I've noticed some people are more naturally capable when raising children with Autism.  Others struggle. 

I believe from observing many people who work with people with disabilities, that it is often our upbringing and unspoken rules, that is actually impacting those people to be successful, or to be unsuccessful.  Those who are raised with a different set of rules might just naturally be set up for success for raising a child with a disability, while others will struggle.  

If I were to create a list of unspoken rules that I have grown up with, from my childhood to the present, about parenting, that list would look something like this.

• My child/ren will always listen to me.
• I will be a positive authority figure with my child/ren.
• My child/ren will respond well to the discipline I give them.
• Child/ren are meant to be disciplined in order to teach them consequences for their actions.
• Parents love their child/ren unconditionally and their child/ren do the same.
• My child/ren will always behave well in public.
• My child/ren will always be perfect to me.

After having a rather big wake up call the other day, I started to create a newer, more realistic list, of what I hope will become my unspoken rules of parenting, and even of life.

• My children may not listen to me, but I can teach them, through positive parenting, to listen to me.
• I make mistakes, and need to remember to ask my children for forgiveness so that they feel safe loving me, and being parented by me.
• My child does not like discipline and would rather be talked to, or let off the hook, or treated in a kind manner when needing redirection.
• Children do not always need discipline to learn how to behave appropriately.  Often, they need their parent to set a better example for them.
• Sometimes it can be hard to love each other, especially after a tough day.  That's why forgiveness, hugs, kisses and playing together are so important to do!!!  
• My children often completely disregard me and ignore the rules in public, but eventually, as I teach and guide them, I believe they can learn how to behave better in public.
• People are flawed, and children are too.  Unfortunately, my children were given their flaws by me, and it is up to me to help them cope with them and deal with them the best I can. 

It will take some time for me to change the way I parent my children, but I believe I'm fully capable of doing that.  I was parented, and affected by other parents, who parented from the 50's to the 90's.  Today, as I enter a new century, and my own experiences with the Autism Spectrum, I've come to grasp and accept that I will develop my own parenting style that may never be defined or embraced by others, but that it will define and change my children to give them a better future, and a better life.  

Prayer and an iPad

A few days after my car was repossessed, and it was almost my son's birthday, and I had been home sick with strep throat with my kids for 2 weeks, I woke up crying. 

I was crying because all my failures had hit me so hard, and the worst feeling was that I had failed my son with his birthday.  I didn't care that I can't buy nice clothes, a car, or even just go get my hair cut.  I was missing out on the chance to do something special for my little boy on his birthday.  I knew he wanted an iPad but there was no way I could do that.

I prayed hard that a way would be provided for him to get him an iPad, then I tried to forget myself and got to work putting together a birthday party with what I had around the house.  Every time my despair would overwhelm me and I would want to give up, I just kept on going and made sure to pray specifically for help with my challenges.

Now, my little sister Emily, who knows everyone in the world, is making it possible for my little boy to get an iPad through a Facebook fundraiser.  Who would have thought prayer and love could be so powerful? 

I know I do now.  Thank you for all you've done Emily! 

If you'd like to help, she's almost met her goal.  Here's a link to the fundraiser, and a big THANK YOU to anyone, to Emily, and to everyone who cares enough to help.  Even if it is just the power of a good prayer or great energy sent our way.  Much love from me and my son.

XOXOXOXOXO

Why???

When I started this blog it was because I had an amazing experience with my son one day.

We had been watching the movie Toy Story 2 repetitively (you know how it goes) and he was unbelievably reinforced by the experience to be a great kid in my house.  :)

In the movie there's a scene where the mom cleans out the house and holds a yard sale while her son is gone at summer camp.  After watching this moving many times, one day, my son asked to hold a yard sale at our house.  To many this might seem like something typical or even annoying.  But for me it was a WOW moment in my life when I saw my son do the transfer of information, where he took one piece of information from one aspect of his life, and could then put it into another.

IMMEDIATELY we got boxes, filled them with toys, went outside, and together, we held a pretend yard sale.

We sat in the driveway at his little, blue therapy table, and chatted about the toys we had for sale.  We talked about whether or not any people would come.  He realized we did not have a sign inviting anyone, and so instantly a sign was made from a cardboard box.  We chatted and played together in the driveway, with his younger sister, discussing a yard sale, toys, what it meant for them to be sold (and how they would never come back).

No one came to our yard sale, but we took the supplies back into the house and saved them for later that week when the same thing happened again.  Again, we played yard sale and roll played how to sit at a table, how to wait for customers, and even took out the change in his piggy bank to make sure we had change for paying customers.  We practiced eye contact while talking and discussed the emotions of losing a favorite toy.

While no one bought a toy (I sincerely believe he would have been devastated to really, truly sell a favorite toy) we made many great, and seemingly miraculous memories that day.

My son showed me in his choices that he could transfer the information he was taught, and of his own will and independence, put it into another aspect of his life.  That was truly amazing to me!  We also practiced imaginative play and role play that day, which truly was another WOW moment in our shared life experiences.

He's an amazing son and I am SO, SO, SO proud of him!  I started this blog after that time because I realized that in my day to day experiences with my son I was practicing skills, and taking risks that other parents might want to know about.  I thought they might want to know that somewhere out there, another mom drops everything to play "yard sale" with her son, not just because kids love to play, but because I had a moment where my son who is challenge by Autism, chose to leap into life and create some great memories.

Parenting Autistically - Discovery

Before I became a parent, I studied up on it.  I took classes about infant development, social development, and other classes about human development.  I even got a degree in something I had hoped would help me be a good parent.  My Bachelor's degree was in Marriage, Family and Human Development ((MFHD) now offered as a graduate degree)), which is typically considered to be within the field of Family Sciences.

For years I had also babysat and just in general tried to really prepare myself for the responsibility of raising someone else.  It was important to me to be as good of a parent as I possibly could be and so I took my preparation really seriously.

Once I found out my son was challenged by Autism I felt pretty helpless.  Interwoven in all the college classes I had taken I had learned very little about children with disabilities, and I had not learned about any extensively.

Despite having been a Special Education Teacher in my career, before I had children, I had not had any formal training in a specific disability, but instead had a list of skills I had learned that helped me perform my job responsibilities.  So, despite my efforts to prepare I felt very, very unprepared when I my child was formally diagnosed with Autism.

This led me to really ponder the 4 major parenting styles I had learned about in college, and why it was that I felt like I could not follow one to raise my child with special needs. It seemed to me that only a truly perfect parenting style, something that was considered to be the right choice for society to pick, would also include parents of disabled children.

In doing my research for this blog post I looked towards the college I attended, Brigham Young University - Provo, to see if they had wondered about this as well; whether or not there was a specific parenting style for parents to use with a disabled child.  I discovered one News Release called "For children with developmental disabilities, parenting style matters".  Instead of adapting to one parenting style the article suggests that a parent of an child with Autism adapt a positive parenting style in order to raise their child well. I appreciated this article, but still felt I needed more answers.

As I looked further into the four parenting styles, I was reminded of a diagram I learned my freshman year in college.

	Parent Discipline
Parent  Involvement		+	-
	+	Authoritative	Authoritarian
	-	Permissive	Uninvolved

When you interpret the diagram/graph/visual aid, it pretty much means what it appears to be.

The best parenting style is called "Authoritative".  When you are being an authoritative parent, you normally use positive discipline with your child The experience of you being involved in your child's life is also a positive experience for your child because an authoritative parent is not overly dominant, is usually a good teacher, and has unconditional love for their child/ren.

The second parenting style in the diagram is called "Authoritarian".  When you are being an authoritarian parent, you normally use negative discipline with your child, which is why parent discipline is listed as a negative, because the outcome is negative.  While their involvement with their child/ren is high, which is considered a positive, it might not make your child that happy depending upon how dominant you are.  Many parents who are authoritarian may be considered to be punitive in their relationships with their child/ren.  That is part of why their involvement is so negative, even though they are very active in the lives of their child/ren.

The third parenting style mentioned is called "Permissive".  When you are a permissive parent, you struggle to discipline your child, and would rather avoid it, so discipline is always done in a positive manner, but may not be effective.  Parent involvement is listed as a negative, even though they are playing the "nice guy" when they discipline, because when a permissive parent has the chance to be involved with their child, they normally step back and either don't do anything, don't say anything, or their presence isn't really felt by their child. Overall they let their child do what they want, but they know about it.

The fourth parenting style mentioned is called "Uninvolved".  An uninvolved parent does not discipline their child at all, which is considered a negative because they really should be somehow disciplining their child.  This is always a hard one to discuss because when parent's discipline they really shouldn't be as harsh as the Authoritarian parent, but they also shouldn't be as demure as the Uninvolved parent.  With the uninvolved parenting style the parent involvement is also a negative because the parent is completely out of their child's life to the point that they might not even know what is actually going on in their child's life at all.  Overall they let their child do exactly what they want to do, and the parent might not even know what their child is up to at all.

It's always hard to label a person's parenting style.

Coming to terms with it and discovering who and what you are is not always the best wake-up call for a person, but I've found that exploring these styles has helped me learn new skills and ideas to be a better parent.  That is part of why I researched them again when I discovered my child had Autism.  I was hoping there was a quick "go-to" parenting style I could use as I got on my feet and discovered how to parent my child.  I found out that there was not and that a lot of research has not been done on the subject.

That is okay though, and is understandable, as every child on the Autism Spectrum requires a different life experience.  I just wanted to give my child the best.  So, in order to do that I began to explore how to parent using all four parenting styles, with an emphasis on positive parenting when I could.  I have found overall that combining the four has been a very hard challenge for me which is still hard to describe.

However, I have not given up on myself, or on others, as we attempt to discover how we can parent our children challenged by Autism, in the best way we possibly can.  I believe our love for them will primarily pull us through most of the challenges we will face with them, and in the end, if that is the best a parent can do, then we have succeeded.

Parenting Styles - 1, 2, 3, 4

There are 4 different types of parenting styles:  Authoritarian, Authoritative, Permissive and Uninvolved Parenting Styles. If you could put them into a box or chart to show them it might look something like this.

Taken from: www.madpsychmum.com

A brief description of the four parenting styles could be:

Authoritarian Parenting:  A large amount of control.  Parent has a large amount of control over their children, and their children mainly feel loved only when their parent approves of them.
Authoritative Parenting:  A healthy balance of love and control.  Children feel loved and accepted unconditionally, while knowing exactly what is expected of them by their parent.
Permissive Parenting:  There is love in the home, but no sense of control or structure in the home.  Parent feels it is wrong, or may feel unable, to set up rules of conduct and expectations.  Children feel loved because they get to do whatever they want.
Uninvolved Parenting:  There is no sense of control or love in the home.  Children do not feel loved because they have no sense of belonging in their home and do not feel loved by their parent.  In these homes the parents are often gone, so there is little to no control, structure, or expectations.  Children may feel lost with that lack of attentiveness and concern.

Taken from: departments.weber.edu

When you study the parenting styles it is typically believed that Permissive and Uninvolved parenting are the least desirable mainly because it sets up the parent for not even being involved in the home as an actual parent.  Many parents who choose to be Permissive or Uninvolved are perceived as more of an equal to their children, or as another child, in the home.  These parenting styles also do not set up the healthy boundaries of a parent being in a position of authority over their child, which children actually need to thrive, and not survive in life.  Also, these parenting styles set up unclear expectations for children to feel loved.

Authoritarian parenting is considered to be an more desirable parenting style because it sets up a parent to be in a position of authority over their child.  While at the same time this parenting style can be undesirable because it can lead towards the children not respecting or loving their parent depending upon how harsh their parent is.

Authoritative parenting, which is similar in name and meaning to Authoritarian parenting, allows more flexibility than the Authoritarian parenting style does.  Authoritative parenting lets the child know clearly where the parent and the child are in their separate roles.  It also allows for a sense of responsibility from both while nurturing a loving relationship between a parent and their child.  This is considered to be the most desirable parenting style because it allows for love, control, structure, and healthy expectations from both the parent and their child.

Taken from:  blog.leb.umn.edu

All four parenting styles may present challenges to any parent.  Finding a balance of love, leadership, control, structure, balance, and consistently is difficult for anyone to do.  Most people fall back on the parenting style they were raised with, by their parents, to give them direction about how to raise their children.  Some may accept it and move forward with parenting their children in the same way.  Those who want to change their parenting style may be faced with many barriers that make it difficult to change, if they do not have a support system or role model which helps them accomplish that.

As you ponder which parenting style you follow, be fair to yourself and allow for flexibility and change when needed.  Who we are, is always a work in progress, and we always have the chance to change ourselves, and our lives, when needed.

That awkward first question

Last week I had someone ask me a question, which I haven't been asked in a while, but is part of why I started this blog.  That question was "How did you know something was wrong with your child?"

The first time I was asked that question, before my son was diagnosed, left me confused and hurt.  I wondered what was wrong with my child, and found myself wondering if that was why I received so many harsh stares and awkward moments of eye contact with gawking onlookers in the grocery store.  How was I supposed to know as a young mother with my first child, that throwing a fit for 30 minutes about sitting down in the grocery cart was not typical?  I thought I was just being a patient loving mother, but I digress.

The other night, the answer I gave this person who asked me this awkward question (which I don't mind being asked anymore) was that you can't always know that a child who has "autistic traits" is actually Autistic.  There is a fine line between determining if a child who likes cars, is actually fixated on cars, or if a child who spins is actually self-soothing or just spinning for enjoyment, or if they are hand-flapping for the sound, or just because they have water on their hands that they are trying to get off.  I stood up and even visually portrayed for this worried grandmother what hand flapping, and spinning looked like and tried to help her see the differences.  We discussed what it means when a child doesn't make eye contact, or why they might not be responding to their name, "are they just around the corner out of earshot, or are they right in front of you and are not responding to their name?"

Many of the traits witnessed in a young child that is Autistic are also exhibited in a child who has no disability at all, and so in the end it takes the help of a professional to determine whether or not a child needs help.  In the end you won't help your child either, whether or not they are Autistic, by simply forcing them to stop these worrying behaviors.  The best step is to get your child assessed as early as possible!!!

On the website Autism Speaks, under the tab What is Autism? there is a description of the disability as well as links to other resources.  In the left had column there is a link for Learn the Signs.  That would be the most professional resource I could easily find online for a parent who is new to this world of Autism.  That website would contain a world of information I could only touch on, and has experts who weigh in on this topic.  

The rest of the answer to that question for any concerned parent, is that you, "you", YOU know your child far better than anyone else.  If you're concerned, just get your child checked out.  There really is no harm in it.  The least the experts will do is tell you "no, your child is developing just fine", the best they will do is help you along this journey. 

If you're still wondering how to do that, the steps are easy to follow, but you will gather a lot of information along the way so be prepared to ask questions and get involved!

*Start by visiting your child's pediatrician and express your concerns.

*Request an evaluation depending upon the outcome of that conversation.

*Cooperate with those who come to your home to evaluate your child.
     **Share, share, share with them the stories of your child.  Not only your concerns but the things you take pride in as a parent.  Give them the full picture of your child, because in the end, you are the expert and the advocate for your child. 

*Recognize and accept that not all children with disabilities will always receive at-home interventions, Speech Therapy, Occupational Therapy, and Physical Therapy (along with any other therapies unique to your child).  
      **They may be evaluated for them, but they may not qualify.  Try to find out why and decide if you need to pursue those services any further. 

*Take your child to the therapies that they qualify for, and observe their progress!
     **This will help you take pride in how wonderful your child truly is.
     **Take some of the tips you will be given home with you, and try them out!  Some therapies will surprisingly resolve problems that seem insurmountable to overcome and will make your home life so much happier for all of you. 

Regardless of whether or not your child has a diagnosed disability, they might still need Speech Therapy, or Occupational Therapy, or Physical Therapy to help with their development.  Accepting that help doesn't necessarily mean your child has a long term disability when they just need help "for right now" instead of for the rest of their lives. 

My final note to people who are concerned, is to" let other people tell you no.  No, your child is not Autistic.  No they are not disabled".  If you're concerned, let someone else who is a qualified professional tell you if you need to be any more concerned about your child.  If the answer is yes, there is something going on and your child would benefit from some additional help right now, grieve for a while, but I would advise you to quickly get to work to give you and your child a brighter future. 

It might be hard to accept this kind of help for your child at such a young age, but I believe that in the end that if you accept that help, you're giving them a brighter future, and you're giving yourself a better chance at being a successful parent.  You deserve that, the chance to feel like a great parent!  You're also giving yourself peace of mind as a parent, whether or not you like the answers to your questions.  You can find out what needs to be done (or not done) to help your child, and that, quite frankly, is so much easier than being the person stared at mysteriously in the grocery store. 

Finding Out - Part 2

Soon after the wonderful woman from the Regional Center (Far Norther Regional Center) came to my house to assess my son, I received some phone calls from people she had referred to me to help my son.  I was so unfamiliar and confused by what was going on, that the "wonderful woman from the Regional Center", I'll call her "my first angel" from here on out, just handed me all the tools I needed to start helping my son. 

First the Speech Therapist (ST) called me, then a local agency that did a lot of early intervention (birth to age 3), and then the Occupational Therapist (OT). Two of the agencies came to my home (I had to go to the OT which was fine) did their own assessments, and then created a plan to work with my son to help him make as much progress as he could in the 3 months we had. As we talked and met, and I explained how wonderful my son was, they all joined me in a team effort to help my son as much as we possibly could before he turned 3 and was no longer eligible for early intervention (birth to 3) in the state of California. 

Over the course of the next 3 months I saw changes come into my sons life as his "teachers" worked with him and helped him cope with his many challenges.  Some of those challenges were night terrors, refusing to eat, being limited in talking, refusing to look me in the eyes, changing from one event to another, holding my hand, wearing clothing, wearing shoes, and letting me be close to him. To a lot of outsiders who saw my son do these things, it would appear that I was just not parenting him well and that his actions were all a result of my lack of "being in control".  There was something instinctive going on there though.  Something that could only be communicated at those rare moments when he looked me in the eyes.  Fear.  Confusion.  Helplessness.  Joy.  Intelligence.  Desire.  Asking for help.
My son was, and is, amazing to me.  As we began to do his therapies together, I discovered that he was a fighter, and that more than anything, he was a social child who wanted friends and wanted to be loved and accepted.  As I saw that, it ignited the fire in me of wanting that for my son - for him to be accepted and to have friends.  That became my motivation to take him to every therapy appointment and to work with him on things at home in our "free" time.  Somehow he helped me understand what he was missing out on life, and truly wanted, friendship and connection.

Tidbits (that prepared me for this journey)

Before I had my children I worked as a Special Education Teacher under an intern credential in the State of California.  I worked off and on over the course of 4 years as a teacher working with a wide range of disabilities.  That presented new challenges to me and taught me a wider range of the people that are on this planet. 

When I entered the world of Special Education as a teacher, I typically felt like a person who got thrown into a swimming pool, having now idea how to swim, but loving the water.  I was constantly affected and guided by my students' disabilities, having a very limited knowledge of how to assist them, but gained a lot of knowledge as the year went on.  I attempted to gain more education and knowledge, but found out that for a lot of Special Education Teachers that you really have to do a lot of additional study, beyond a teaching credential, to really become well versed in certain disabilities.  What kept me afloat was that my older sister had instilled in me a desire to respect, value and help persons' with disabilities, and that led to a desire within me to care for them.

I was not as well versed as I am now in researching things online, but as I improved in those areas, I discovered that there are a lot of resources online for people to learn more about disabilities.

Some of the websites that I found were:
*http://www.ldonline.org/ 
*http://www.autismspeaks.org/
*http://www.ncld.org/

Other times I have just performed random searches for topics I need to be better versed on, and one of my favorite discoveries was a link that discusses different tools that can be used in the classroom and at home to help children with special needs.  That link is:
*http://www.eschoolnews.com/2012/05/11/six-great-special-education-resources-for-parents-and-teachers/

Having those experiences where I had to jump in and learn so much on the spot in order to be a good teacher, really refined and prepared me to be a better mother to my son.  Originally I felt unbelievably overwhelmed by the task set before me, but as I grew to understand Autism better, I discovered that the skills I had gained as a Special Education Teacher really helped me grow as a mother of someone with special needs, so that I can better accept his "exceptionalities". 

Finding Out

The actual process of finding out my son had Autism was different for me than it is for a parent who finds out during the school years that their child has Autism or is on the Autism Spectrum.  The process of finding out your child has a disability, before they enter the school system, takes a lot of advocacy on the part of the parent, but is a vital role to making sure your child is having the best developmental experiences possible. If you find out early on that your child has a disability, early intervention can actually play a key part in them overcoming obstacles (depending upon the disability) during their early development.

Taken from:  http://www.autismspeaks.org/what-autism/learn-signs

Early on I discovered my son would not respond to my voice or to his name.  This worried me, and so as I moved from state to state, I would check with the doctors in each state about what I should do for my son.  In California (CA) I was told that he had to be 6 months to be assessed, and we moved when he was only 3 months old.  The doctor in Idaho (ID) told me he had to be 18 months old, and we moved before he even turned one.  Then the doctor in Arizona (AZ) told me my son needed to be 2 years old in order to be assessed and we moved less than a month after he turned 2.  All those moves landed us back in CA, but by then I felt so beat down by the lack of support in my life, that I was discouraged and did not want to ask anymore about my son and his development anymore, because I felt frustrated that no one seemed to have answers, and that my husband was constantly having us move before I could get my son any help.

Once we got settled in another new apartment, in California, my son began to hit himself in the head and expressed a lot of frustration over talking and eating meals.  He was also experiencing really severe night terrors almost every night for a long period of time.  I worried that he was sick, and noticed that his sister also started to behave oddly by refusing to be laid down on the changing table, and would arch her back all of the time.  These behaviors had me very worried that something was wrong with both of my children, and so I took them both to the doctor wondering if they had a sinus infection or something else going on, or they had been affected by the moving and homelessness that we had experienced as a family.

When I told the doctor all of my concerns (and there were many) she initially referred both of my children to counseling and to a local Regional Center for assessment.  She explained her concerns that my daughter might have spastic cerebral palsy, but never gave me a suggestion about what might be going on with my son.  Personally I was too overwhelmed myself by all the moving and having been homeless and living with family off and on for several months to really see what was going on.  I just needed to get some relief and some help for me and my children.

Even though the doctor referred me to these services, I had to make the phone calls. That was hard.  I wasn't really to accept that my children had challenges that needed to be addressed.  Once I finally accepted that I had to do something, it started by me calling the counseling center because I was concerned my children were behaving this way from all of the stress of moving. I found out that my children were too young to be seen by a counselor but that by a certain age (I think it was 4) if they were still behaving oddly, they suggested I call them back.  The counseling office also expressed that they thought the local Regional Center would be able to help me with my children's symptoms.

I had never heard of a Regional Center before, and there seemed to be a very grey cloud that hung over the discussion of me contacting them.  It made me wary and more than anything, after all the moving and the stress of a lot of change, I was concerned by the feeling I got that contacting the Regional Center might open a dark and scary door in my life that I wanted to keep nailed shut, for now.

However, going home and dealing with my son having night terrors which kept him up all night, and watching him abuse himself during the day (by hitting himself in the head), and then watching his sister behave oddly, left me feeling helpless and encouraged me to make that call finally.  The Regional Center was unbelievably kind and courteous and professional.  They set up an appointment immediately with one of their assessors who would be able to come the next month, to assess both of my children at the same time.  In the meantime I tried to figure out on my own what was going on with my children and tried to make modifications to our lifestyle to meet their needs and in general tried to create a greater atmosphere of stability in our home.

When it came time to meet with the assessor, I was relieved to see that she came to my home to observe my children in their natural environment.  Even though the doctor at the clinic had been very helpful, I knew she had not gotten to see all of the behaviors my children exhibited.  When the assessor from the Regional Center came to my home, she quietly observed my children and was extremely friendly and kind towards me.  She asked me multiple questions about my children, the history of our moving and the stories of my pregnancies and births and what had gone on there.  I felt comfortable sharing my personal information with her, but even more importantly felt that I needed to share all I could with her to help us both unravel the puzzle of what was going on with my two children.

While she observed my children she pulled out an assessment which she discretely filled out to keep from interrupting my children from playing.  When I asked her about it she explained that it was a scale which helped her rank where my children fell developmentally.  Having worked as a teacher before, I was familiar with an educational assessment, but not with a developmental one, and so I felt more comfortable as I found out that the process was fairly similar to what I had done to assess students as a teacher (filling out a form, scoring, ranking) but that it was in part subjective to what the trained assessor was seeing in my home.  When the appointment came to an end she expressed to me that she felt my daughter was doing well, and had not seen any signs of spastic cerebral palsy, but that my son might need more services.  That brought me some relief as I felt it would be quite overwhelming to have two young children diagnosed with disabilities to raise under my current circumstances.

Before leaving, the assessor explained to me that she was going to go back to the office and finish filling out the assessment, and that she needed to write down some notes about what she had observed in the home with the children.  Then she was going to look at some other assessments and things she needed to fill out as well.  She explained that she would be mailing me a formal write-up of the assessments in the mail, with her recommendations, but that in the meantime she would also refer me to some agencies which would be contacting me.  It was also explained to me that the assessment that I would receive in the mail would not be a final diagnosis because that was not typically done until the child turned 3. 

When she left that day, I felt a great deal of love and support from someone I didn't even know existed in our society.  It felt like I could breath a little and take some comfort in knowing that the assessor was going to "call in the recruits" so to speak be referring my son to agencies who could assist him with his developmental challenges.  At that point, I knew I had at least 4 months to try to intervene for my sons sake until I found out what his formal diagnosis would be.  That was when the real work began, that part where you discover how much you truly can mold and shape your child.

Finally Getting Started

My story is different than yours, as it should be.  Every parent who discovers their child has a disability whether it be Autism, Dyslexia, Down Syndrome, Cerebral Palsy, or any other disability, is going to have a different and personal response to how they take the news.  Mine was different than I expected because I thought my years of experience had prepared me to take the news, but it didn't, and slowly, I've begun to understand why.

Before getting married and having my two children, I was a Special Education Teacher.  I had grown up with a disabled sister and niece and believed I was completely open to all people with disabilities.  Working as a Special Education Teacher had also given me new insight as to what makes a person "normal" or "typical" and I felt that had broadened my view of life as well.  But getting the news that my son had Autism was harder for me to take than I had expected.

The first time I suspected something was wrong was actually right when he was born.  He came seven weeks early and that instantly had me on the lookout for any concerns or delays.  He spent three weeks in the NICU (Neo-natal Intensive Care Unit) and I stayed diligently close to my first child.  When he came home at the end of those three weeks, I started to examine him more closely for the first time, with less worry and fear of injuring him.  I discovered something that alarmed me, but that the doctor told me not to worry about.  My son didn't respond to his name or to my voice.  The doctor's told me that I should wait until he reached his gestational age before I continued to worry further, and that in the state we lived in (CA), he could be assessed as early as six months if I still felt he needed to be looked at by then. 

By the time he was six months old we had moved out of state to Idaho, so my husband could complete his education.  I continued to be worried about his development and mentioned something to a Woman Infant Children (WIC) counselor about his delays in voice recognition and eye contact.  She informed me that in the state of Idaho he could be tested at 18 months, should I still have concerns by then.  So, I went on with my life and continued to try my best to help my son reach his developmental milestones of rolling over, crawling, walking, eating, and talking. 

By the time he was 18 months old, we were in Arizona, pursuing yet another career plan of my husband.  I was working and distracted by the complications of going through a bad pregnancy.  Eventually I noticed that my son's speech was undoubtedly delayed, and I started to make a list of the words he could say.  After taking him in to the doctor for his 18 month checkup I asked about his speech and language delay.  The doctor first asked how many words he could say, and I responded about 50 words.  The doctor then asked my son to say some of them.  With each utterance the doctor looked at me curiously for confirmation of what my son was saying.  It was the first time anyone told me that I was the only person who could understand my son.  At the end of the appointment I asked the doctor if my son could be assessed since he was now 18 months old.  The doctor responded that in the state of Arizona my son had to be 2 years old to be assessed, and that if I was still concerned by then, that I should bring him back in and they would start the process of getting him assessed.   

I went home, as I did with each appointment, and updated my husband with the progress of our son.  As usual he responded very briefly and expressed that he thought I should let it go and not worry so much.  This upset me and when my husband asked me to move again just a few months later, right before our son turned 2, I began to wonder if there was some kind of a pattern in our moving.  We always moved before I could get our son assessed.

The next move took my little family back to CA, but now we had a son and a daughter.  We were homeless for a period of time, living with family, until we settled in an apartment together for four months.  During that time, I took my children in for checkups since both were behaving oddly.  I was concerned that the moving had affected them too much, and the homelessness.  There also were severe problems in my marriage and I wondered if that kind of stress could affect a child's development in the manner that my children were behaving. 

The end result was that my daughter and son were assessed, and my daughter was considered to be somewhat delayed but not anything to worry about.  However, my son was entered into early intervention programs.  His speech and language was delayed, he had night terrors, he would barely eat, and he would consistently hit himself in the head whenever he seemed to be under stress or was frustrated that he could not quite get the right words out.  He also had started to head butt me in an inconsistent manner, and so I could not find the trigger for his behavior. 

The early interventions almost immediately helped my son begin to make progress.  The Speech Therapist and the tutor helped open my eyes to several great ideas about how to help my son expand his language.  They also gave hints and suggestions about how to create a routine that would get my son invested in eating.  One story that was shared with me that helped me gain perspective, was that a child with similar needs had a very set routine about eating a certain meal.  Apparently this other child wanted to see the food prepared, put into a certain bowl, warmed up in the microwave for 30 seconds, put into the freezer for 8 seconds, and then this other child would sit at the table and eat the food with a specific spoon, and only if the meal was at a set temperature he wanted.  If the food was the wrong temperature, the entire routine had to be restarted since the child could not tolerate seeing the food re-warmed up and then cooled off again. 

Hearing this story was when I first began to understand that whatever my son had going on (no one would suggest a diagnosis yet) was going to take a lot more effort than I understood how to overcome.  I knew right then I had a lot to learn and that the process might become a long and difficult one to cope with.  But no matter what, I knew that the key to my sons success right then, and now, was for me to accept him, whatever I found out.  No matter what the outcome would be, or what demands would be placed on me, I knew the key to my success from that point forward would be unconditional love.