Saturday, July 26, 2014

Sometimes it only takes one person to start a journey...

Every journey has a beginning and usually an end.  It has ups, downs, and typically many plateaus in between.

Most of the time our lives our shaped by people, events, and decisions we make on a whim.  Sometimes we make decisions after agonizing about what might be the best thing to do and sometimes it doesn't matter how much we weigh our decisions because sooner or later fate does step in and make a decision for us.

We all question the choices we make as parents and as people living our lives doing what we think is right.

We do what we think is best, and sometimes we just make decisions because we are stuck, conflicted or pushed to a point of no return.

Sometimes we just go with whatever happens because we are just tired of all the worry. 

Today I got to celebrate the retirement of the best decision I ever made.  Today I got to join in a celebration honoring a person who changed my life.  I know she has changed many lives and I know she will probably never fully understand how her act of kindness changed me, made me better and pulled me from the deepest, darkest hole that I was stuck in.

 I was drowning.

I was stuck.  I was living in a pit of denial, self-pity, and desperation as a parent and as a person.

I was desperate. scared. worried.  hopeless.  I thought I could "fix" it by ignoring it.  I thought I knew everything.  I thought, I thought, I thought.

It's hard to think about and go to that place in my mind and I really don't like to think about it because I'm just so grateful I'm not there anymore.

It's been over six years since I was in that place.

There are days that it seems like a lifetime ago and there are days that it seems like only yesterday, but it was the beginning of a journey.  It was an awakening.  It was the beginning of my life as a parent of a child who thinks differently and the beginning of a journey that may end up to be the most important thing I do in my lifetime.  

It was the day I reached out to a woman named Barbara Brinkman and she changed my life.  She helped me simply by doing her job.

It would take too long to go into all the details and it would be difficult not to blame others along the way, myself included, if I shared the full story.  None of that really matters now anyway.  What matters is that today I was so happy to attend a retirement party for a woman who changed me, a woman who finally gave our family the answers nobody else was willing to give us.

We have a son who was amazing then and who is equally amazing now.  But Barbara Brinkman helped us start the journey that taught our son who had speech but didn't have an understanding of language become a boy who constantly tells us how he is feeling.

She started the journey that gave Rye a voice that was always there, but a voice that we didn't always understand.  We continue to work on helping Rye to communicate more and more; but in looking at where he was then and where he is now there is no real answer other than the kindness and support of many wonderful people like Barbara.  Our journey started with Barbara Brinkman and only Rye knows where the journey will end but the willingness and dedication of this amazing lady made it possible for the journey to begin.

Happy Retirement Barbara!  I hope you know how amazing you are and I hope you know how much you changed our lives.  You will forever be the person who extended a hand and pulled me from a pit of darkness and into a world full of hope, dreams and possibility.

Thank you.  

Friday, May 9, 2014

Happy 11th Birthday Rye- thank you for teaching me the rules of true friendship

Yesterday Rye turned 11.  He was very hesitant at turning 11 because he said he wanted to stay 10 like Ben 10 forever.

Rather than writing a letter to him this year, I decided I would interview him and allow him to give you a little insight into his life and what he thinks about his birthday.

If there is one thing I could ask you all to take away from this video it is that many people who take time to educate themselves about Autism Spectrum Disorder know that difficulty with social skills is something that most people have a hard time with learning.  Rye struggles, but Rye tries hard and he wants friends, he loves friends, and sometimes it takes the role of a good friend to make a friendship with Rye successful.  Teach your children the two rules Rye and I have been talking a lot about lately.

#1 - Friendship should be fun.  It should be fun for both people which means both people have the same amount of power in the relationship.  It is a give and take.  Good friends don't always agree but they work through their problems to make it better. 

#2 - Thanks to a Clone Wars episode rule #2 has had a great impact.  "Do not leave a man behind."  If you see someone who is having a hard time making a friend or you see someone in the group who is alone, include them, talk to them and recognize that the rules of friendship do not come easy for all people.

The greatest gift you can ever give your child is to teach them to seek out a friend who is having trouble, seek out a friend who doesn't have any friends.  True friendship means both people in the relationship have the same amount of power.  True friendship is not about pity, it's not about having all the control, it truly is about doing all you can do to not leave a man behind.  Teach your children to take a chance on the kid who might be a little different, the kid who might not be able to make the first bid at interaction, and the kid who if you take a chance might just turn out to be somebody extraordinary and fun. 

I may be biased as he is my child but I can honestly say I don't have a better friend in my life than Rye.  He always has my back, he loves me, and he is absolutely a lot of fun. If somebody offered me today the opportunity to change Rye so that he did not have ASD I would say with complete honesty "NO WAY". 

He is who he is...a friend, a son, and an absolutely amazing 11-year-old boy.

I love you Rye.  Happy Birthday sweet boy.  Don't ever change who you are to make a friend, just keep trying and being the absolutely amazing, funny, gifted boy that you are.  Momma loves you to the moon and back and as long as you are happy, I'm happy and so grateful everyday that I get to be your mom. 

Saturday, April 5, 2014


Perspective.  We all see things differently than others. Most of us follow certain social norms when it comes to interacting with others. Most of us learn these norms through social experiences as children. It is true that people who have autism have difficulty in learning typical social norms therefore they have difficulty with perspective taking. 

Today I'm not going to tell you all the reasons why people who have autism have difficulty with this skill.  

Today I'm not going to tell you how I think you can teach people to "fix" this difficulty in learning.  Today I'm going to share (with his permission) an interaction with a young man who I have worked with on and off over the past few years.  

I have worked with this young man (who is now teenager) in his home and community on developing his social skills. I am not currently working with him, however he does email me from time to time to check-in and to ask questions. Below is part of the email correspondence between us.

(Please note: I have permission to share the following from Z and from his mother.  I have also slightly edited the text as Z prefers to email me using all capitals and does not choose to use any punctuation. I have added punctuation and lowercase letters but the rest is his.)

Z: Hi.  I read what you said to my question.  Yes this is making me angry and I do know what other people would do and what I should do because we learned it.  I am doing what you said.  I am remembering what a thought is.  I know I am not the only one who has a thought I remember that my friends have thoughts.     

What do I do when I spend so much time thinking about what my friends are thinking and trying to be like my friends that I can't remember what I was thinking? How do I know what I am thinking if it will be what they want me to think?  If I do it wrong they will say I am weirdo and they going to not be my friend. I'm tired of worrying about friends and this is why I tell you and mom that it is just fun to not have any friends.  I want friends to want to do what I want to do all the time. I hope you read this and tell my mom that I don't have to go and if you do she will listen to you. 

ME:  Wow Z.  You really have me thinking... First of all I never want you to think that you have to think like other people I just want you to understand that other people think differently than you do and feel differently than you do. Everybody has different thoughts.

You can and should have your own thoughts and you should share your thoughts with others and allow others to share their thoughts. Sometimes you have to take a chance and just see what the response will be but I don't want you to feel like you have to think what other people think. I want you to be who you are.

I know this is really confusing and I need to take some time to either meet with you or write more later in a way that you understand. I have a meeting now but will try to call you later or email
 tonight. I'm sorry this is so confusing. I think it is confusing too. 

Z:  Welcome to my world. Are you autistic?

Z and I talked on the phone and hopefully I was able to give him some guidance that wasn't so confusing. He said he felt better after we talked. This whole interaction really got me thinking and to be quite honest it got me feeling guilty.

All people should never be afraid to think what they think. Social norms are "rules" but we all (especially me) need to remember that nobody follows all the rules all the time. If we did life would be really boring.

I sent Z an email
 last night asking him if I could share our conversation on my blog because I thought it could be helpful to other people. (His mother also gave me permission to share.) This was his response. 

Z:  Yes you can talk about me on your computer stories.  My mom showed it to me. You should talk about me because you are talking way to much about your family on your computer. You are supposed to change topics so people don't get bored. Also I don't think your son is a pirate. Are you a pirate?

Dear Z if you are reading this story, no, I'm not a pirate.

You are correct I should probably change topics every now and again on my blog because too much of anything is usually not good.

Be who you are and remember that I never wanted to change who you are as a person; I just wanted you to understand that other people might think differently than you. Thank you for reminding me of that and for giving me the opportunity to think about how I do my job.

Perspective. Wow. This is why I do what I do. I get to meet some pretty amazing people and I get to be a part of their journey.

Friday, March 21, 2014

The Journey 2014

The journey. The path. The walk. The phases. The good. The bad. The ugly. The things that make us mad. The things that make us happy. The things that make us who we are.

Our babies. Our toddlers. Our school-aged children. Our adolescents. Our children who grow into adults.


Every person who takes on the role of parent knows exactly what I'm talking about. Parenting is hard. It's a challenge. It's also for most of us, the most amazing thing that we ever experience in our lives. That being said, everybody's experience is different.

Here comes the BUT... You know the one, the one where I say BUT for parents of children on the autism spectrum or children who have developmental disabilities it is different. Well, today I'm not going to say that. Today I feel different. My thoughts today have been building slowly over time for seven years. Today I feel the power to embark on a new journey that I have never felt more pride, fear and accomplishment in accepting and embracing.

Perspective. Change in perspective. Teaching perspective taking to others.

My head is spinning.

I work as a Behavior Consultant at Alternative Community Training, an amazing organization in Columbia, Missouri. I also, at times, most of the time, parent as a Behavior Consultant. I spend a lot of time teaching people, my son included, who don't have the social skills that are needed to live and be independent in their community. I accept that. There are many days that I agree with it. But lately there are a lot of days that I hope, dream, and imagine living in a community that embraces differences in all people in a way that can and could make every interaction with others that we have a teachable moment.

Social interaction that is an experience that is filled with acceptance and not judgement. An experience that is filled with acceptance and not pity.

Social interactions between all members of our community where every member takes a few seconds to think about what the other person might be thinking before placing judgment or misinterpretation on the other person. An interaction between two people who just accept each other for who they are and who they are striving to be.

The best person that they can be in that moment.

It's nearing the end of March, and in our family that typically means gearing up for April, Autism Awareness month, a month filled with blue puzzle pieces, blue lights, walks and awareness for our son who does in fact have an Autism Spectrum Disorder. By writing this, I'm not asking you to see blue puzzle pieces and blue lights as negative or exploiting his differences in any way. I'm just asking that when you put on that blue shirt, turn on that blue light, and participate in events that bring needed awareness and education about the differences of all people that you make a real effort to not think about pity. Instead, take pride in understanding that all people are different.

On April 2nd, World Autism day, we will be wearing our blue, we will be raising awareness that brings about change and most of all we will be looking at our boy with pride, acceptance and teaching him that all people are different, have different abilities and most of all that we love being his parents completely because of who he is and who he is striving to be.