Tuesday, July 14, 2015

It's pretty freaking great...most days anyway.


Dear Scott,


Happy (whatever you call it when the number of years you’ve been married matches the day of the month you were married in) Anniversary!

14 years on the 
14th of July. Here are 14+ reasons this train wreck works...most days anyway.


  1. You have an amazing but quiet way of ignoring my faults and celebrating my successes.  
  2.  You are a great dad. I know other good dads, I have an amazing dad, but a lot of days you're better than me as a parent and I thank God for it. I'm so lucky to have a father that's top notch and that I married an amazing father too. 

  3. You're neat. You're tidy. You understand housework way more than I ever will regardless of how much time I spend on Pinterest.  People who have ever lived with me know that this is a must in a partner for me. Yes it is our biggest fight but as much as I complain about this clear strength of yours, it is a blessing.  You are the only reason we can actually have people over to our house on a good day.
  4. You are totally getting better looking the older you get!!! Seriously I do not understand this and it's not meant to be funny. You are a slave to fitness and believe me when I tell you (all the time and you hate it) that men who are bald early age better. It’s true!! You are aging backwards faster than Benjamin Buttons. Yes people, be jealous. He's totally a hottie. 

  5. You are comfortable in letting me take the lead on certain things but still find a way to be present. It’s not easy raising a child on the autism spectrum and it's definitely not easy patenting one with a partner who thinks she's an expert. You value my opinion and expertise but you also have the balls to tell me when I'm being overzealous. You keep me grounded when my head is in crazy-town because of some new article I read. Thanks for being the balance between my worlds. 

     
 5.5.  You are a good speller.  Thanks for the help on overzealous! 

     6.  Your art. Your talent. Your craft. Your brand.  Your creative spirit.  I love that it's the thing 
          you like the most about yourself because you gained it from your mother. Thank you for 
          loving me in a way that allows me to know that I am the only woman you will ever love 
          as much as her.  I wish I could have met her; we sure would have a lot to talk about! 

     7.-14. plus a few more only you 
               will understand…

   Tennis. Big Head Todd.  
   Date #2/3.  Festus. Shuffle board.  
   New Orleans. The atlas. 
   The freaking U-Haul.  
   The canyon.  Basalt.  
   Oakhurst. Napster. Dave. Estes.  
   I do. Aspen. Sunlight. The raft. 
   The rain. The train. The art.  
Shephards Lane. Weaver. The labor.
The butter beans. Rye. Wyatt. Parenting. 

The move. Our home. Our life.

The ups. The downs. All of it. 

It's pretty freaking great...most days anyway. 

I love you. Happy Anniversary. 

Friday, March 20, 2015

Thank You Mrs. B

My first "real job" after college was at the Judevine Center for Autism in St. Louis.  The training and experience I received in the five years I worked for Judevine Center changed my life in many ways. It also prepared me for a future in a way I could never imagine at the time.  The Judevine Center was founded in 1970 by Lois J. Blackwell, better known by all who admired her as Mrs. B.

It didn't take long to learn that Mrs. B, at the time in the mid 90's, was already a living legend.  A pioneer.  The work she had already been doing for 20+ years spoke for itself.

I could not even begin to count or list the number of guiding principles that have stayed with me my entire professional career.  There are three things that stand out to me, have stayed with me, and that I learned in the first week of professional training at Judevine Center.


  1. Respect.  Respect for the individual and respect for all parents.  Individual and parent opinions, thoughts, and most importantly a parent's role in their child's life come first.  
  2. Always a person first!  Mrs. B understood the importance of person first language long before it was a thing.  
  3. Every child can learn and is capable of learning.  Period. 

I was so sad to hear of Mrs. B's passing earlier this week.  I frequently think about how lucky I am to have worked for her years ago.  The Judevine Center has gone through a lot changes over the years with new agencies becoming their own separate entities.  Judevine Center remains today with Mrs. B's daughter Becky carrying on her legacy.  

When I'm asked about my work experience and I mention my time spent at Judevine Center I frequently say that I worked there in the mid to late 1990's before the merging of companies, etc.  I always proudly follow that up with "I'm a Blackwell baby, they raised me!"   

RIP Mrs. Blackwell.  I have offered assistance to many based on your knowledge and I am raising one little boy who has certainly benefited from all that your philosophies taught me.  

Thank you.  Thank you.  Thank you.  

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

Wow.

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.