April is National Autism Month

Don't Forget to Give Someone a Seaner Style Hug to Celebrate National Autism Month

Diversity & Best Friends

Through the years Sean displayed the perfect picture of acceptance of all.  When Sean started a class in school that was “required” to learn tolerance and he was being integrated, I got a call the 1^st day of class advising me that Sean would NOT be attending the class but would “get credit”.  Needless to say I was quite angry and made a beeline for the school to talk to the teacher.  While I was in the office and waiting for the teacher to come and talk to me, I was fuming and the longer I waited the angrier I got.  When the teacher entered the office I looked at her and I was close to tears (thinking all of our hard word at integration had failed on the very first class he attended) and the teacher looked at me and directed me into a conference room.  The MINUTE the door closed I started yelling at her that it was completely unacceptable that she was discriminating against my son and he had a right to attend this class with his classmates and on…and on…and on.  The whole time she listened and tried to interrupt me to say something but I WASN’T GOING TO BE STOPPED stating my sons rights!!!

Once I took a breath she took the opportunity to get a word in and said I am NOT keeping him from attending – I just don’t believe that it is in his best interest.  Needless to say my arms crossed against my chest and I was about to start into another diatribe and she put her hand up and said give me a chance to explain.  I shut my mouth fully expecting the worst and experiencing one of my top 10 joyful mom moments.  Here is what she said: Our class is designed to help our students understand the differences so they will have a tolerance in order to hopefully avoid bullying, teasing and other negative reactions.  After the 1^st 30 minutes I came to realize that Sean didn’t KNOW there was a difference and I didn’t want him to attend the class and learn that there were differences.  I would like to ask your permission to use Sean as an example during my lessons to show our students how they really should be treating others. 

I instantly cried for the 10^th time that afternoon (I became good friends with this teacher and of course gave her permission to use Sean as a role model)– but this time from pride not anger and knew that though as a mom I messed up and made so many mistakes, this is an area that I felt like I did something right.  Sean’s “Bestest” friends crossed the scope of so many diversities and I am proud to say that I was his mother.

There Is No Greater Disability than the Ability To See a Person As More – Robert M. Hensel

We Aren't As Informed About Intellectual Disabilities As We Think We Are

This article in the 2015 Huffington Post article "Intellectual Disabilities in the US" put into words that those of us that volunteer for the God’s Got This® - Sean Nielsen Foundation have known for a long time. 

“We thought it was a critical time to take a deep dive into our national attitudes,” Maria Shriver, the founder of Shriver Media, said in a statement. “We wanted to know where we are today, where we are going and who is going to take us there. The open-minded attitudes of this generation who grew up in classrooms and playing sports with people with ID makes an undeniable case for inclusion... Experience, inclusion and intervention are the ways to combat isolation, intolerance and injustice.”Maria Shriver 

Why We Started The Foundation and What We Wanted to Accomplish

I wanted to start this foundation, I must admit, at first because I was SO afraid that everyone but me would forget that Sean existed and all of his accomplishments would get lost.  All the trials and struggles we went through would be for nothing (totally selfish I know).  I brought the people that was closest to him together to talk through what I wanted to do.  And these are my notes from the very first meeting that took place shortly after Sean’s death.

What do we want to accomplish with our Foundation: 

We want to give other adults with developmental disabilities the opportunities that Seaner had.  I knew from experience with Sean’s friends that several adults that live on their own with or without support did not have access to attending Church, going to Camp or getting out in the community (except grocery shopping).  Whether it was because they didn’t have natural supports to help them with these things, the finances to attend activities or the opportunities to attend them because they are relying on others to transport them and the transportation isn’t available.  

Also, from personal experience with Sean, numerous churches did not open their doors to him and if they did it was to “put them in a class room” so they weren’t included in church with everyone else so the didn’t “bother” the other people attending. 

Thanks to Josh at Living Waters Fellowship we were able to find a church that opened their doors to him with a safe and accepting environment but not everyone has someone that keeps trying until they find it.

Josh introduced us to IRBC Church Camp for adults with developmental disabilities that Sean came to love almost as much as he loved “his church”.

Spread the Word to End The Word

Throughout Sean’s life the R-Word was spewed at Sean and myself more times than I can count.  

During Sean’s worst bullying moments this word was the center of the bullying.  I don't know how many nights I sit holding him while he cried because someone used this word viciously towards him.  To this day when I hear someone use this word I can’t stay quiet.  I have heard all of the excuses that it was OK to use:  I’m not using to be mean toward you so you need to relax; It’s in the dictionary you need to quit being so sensitive; and on and on.  

What that shows me is that people that use this word when they know it bothers you is to be mean, nasty or to cause you pain.  It shows to me they are entitled, insensitive and completely lacking any kind of kindness, empathy and should be avoided by any means. To find out how to be involved in Spread the word to End the word: http://www.r-word.org/r-word-resources.aspx

TAKE THE PLEDGE! I pledge and support the elimination of the derogatory use of the r-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities.: http://www.r-word.org/r-word-pledge.aspx

Miracle League for Ages 19+

Miracle League is starting a new league – it is for people with disabilities AGES 19 AND OVER!!!!  WHOO HOOOO!!!!!  They tried last year but it didn’t come together because they didn’t have enough coaches – so I hope that it comes together this year.  Sean LOVED playing in a league but wasn’t interested in playing for Special Olympics, unfortunately once he reached 19 years of age there wasn’t a place for him to play.  Another example of resources no longer available after graduating High School.

https://kiwanismiracleleague.sportngin.com/register/form/840926527

 The first game is Saturday, May 6^th.  Please visit their web page

Register

In the Miracle League, everyone bats, everyone scores and every game ends in a tie. The Miracle League Field address is 300 NW School St.

Youth Miracle League
All kids ages 5-18 with special needs are eligible to play in this coed, non-competitive baseball league.

Adult Miracle LeagueMen and women, 19 years and older with special needs, are eligible to play. Games will be played after the youth league on Saturdays.

Miracle League

• Game consists of two innings
• Every player bats once each inning
• All players are safe on the bases
• Every player scores a run before the inning is over (last one up gets a home run)
• All games end in a tie
• Community volunteers serve as Angels in the Outfield to assist the players
• Volunteer PA announcers for each game

2017 Spring Season: May 6 – June 17 (No games on May 27)
Registration Deadline: April 12

2017 Fall Season: Aug. 19 – Sept. 30 (No games on Sept. 2)
Registration Deadline: Aug. 2

There is no fee to participate in the program. Register online or at the Parks & Recreation office, located in the Public Services Building at 220 W. First St. in Ankeny.

Register online now:

• Youth League Registration
• Adult League Registration

Volunteers Needed
Volunteer coaches and Angels in the Outfield (volunteers) are needed for these teams. Volunteers are partnered with players to assist them in the game. Angels must be at least 14 years old. School sports teams, cheer/dance squads, and youth groups are encouraged to volunteer as a team. Volunteer now.

For more information, please contact Ryan Penning with Ankeny Parks & Recreation at 515-963-3574 or rpenning@ankenyiowa.gov.

Today’s No Ordinary Day: Celebrate Sean’s Birthday

On February 24, 2017 we will be celebrating Sean’s Birthday; he would have been 38 years old.  

With some tears and reminiscing of the happy times we will be celebrating that we had Sean from 02/24/1979 to 11/10/2013.  I thought you might like to see Sean in some of our favorite times of his birthday!  

Sean’s go to phrase for days that were important to him on his daily call to me was “TODAY’S NO ORDINARY DAY” – Make sure you make the 24^th “No Ordinary Day” in memory of Sean.

This video below shows how Sean lived his life and has a lot of our favorite “Seanerisms”.

Introduction to How We Got Started

If you will bear with me I thought that giving you a bit of background of the main players in getting the foundation started would help:

Me:       Mom; I was blessed by God to have Sean guide me through life for 34 years.  He was my hero and my rock.  He showed me what true faith in God was, what true strength in overcoming obstacles was and he made me a better person.  He was my reason for living and was the greatest gift any Mom could have - Thank You God for the gift of being Sean's Mom. I love him more than I have ever loved anyone even today; 3 years after his passing.  That is why this foundation is so important to me, to continue Sean's legacy.

Bill:       Dad; Bill came into our lives when Sean was 13 years old.  His first meeting gave him a reason to run the other way.  Bill was coming over for dinner and I was fighting with Sean to get his clothes on as I am trying to cook dinner and he was SO excited that he couldn't stay focused (I know that is hard to believe - right?)  Bill knocked at the door and all of a sudden I saw Sean out of the corner of my eye run across the room and throw open the door and jump into his arms with a big Seaner hug....wearing nothing by his underwear!!! Even THAT didn't deter the two from becoming fast friends and Seaner loving him "to the moon and back". He was the best thing that could happen to us and blessed that he took us both on as family.  My favorite memory was when someone called Bill his father and Sean got quite upset and said NO – My Bill is NOT my father he is MY DAD and that is a whole lot better than a father, Bill makes time for me.  Sean was SO proud to introduce "My Dad, the fireman" to his friends and loved that Bill wanted to be a part of every aspect of his life AND that he talked Mom out of punishing him sometime. 

Jacob: Brother Jacob is what Sean called him. He was Sean’s “best friend in the whole wide world” that he met at LivingWaters Fellowship. Jacob became his “Little Brother” (even though he was 12” taller than Sean) because when I told Jacob the story that Sean always wanted a brother and how he asked for a baby brother every birthday and Christmas, but it wasn’t in God’s plan for me. So on Sean’s 32nd Birthday Jacob came to Seaner’s birthday party with a bow on his head and a sign on his chest – Happy Birthday Sean I am your new little brother! On the way home Seaner was so excited by the party but when I asked him his favorite present he said “Mom, I got my heart’s desire! I got a little brother” this is the bestest birthday ever! From that point forward Jacob had Sean’s unending love and devotion.

Kara:     Miss Kara came into Sean’s life 10 years ago when I started working with her and explained to her that you didn’t “meet” Sean you “experienced” him.  She couldn’t wait to meet him and when they met; Sean was completely smitten and they were friends from the moment they met.  When he found out that Kara was getting married he kept asking for “a flower” to wear at the wedding and Kara graciously let him have a flower and he was even part of the wedding party by being  “in charge of smiles”.  Seaner loved her so much he even proposed marriage right before she was ready to walk down the aisle – and in true Kara form she smiled, she let him down gently and he walked away a happy boy and Kara knew that she had the love of Sean for the rest of his life and after.

Josh:     Joshdawg is the preaching minister at Sean’s Church, LivingWaters Fellowship, yes in Seaner’s world it was “his church”.  Josh has created an inclusive and accepting environment at his church and he made certain that Sean was an integral part of church.  Bill and I went to this church a few times before we had Sean attend and after the first time he attended LivingWaters he looked at me and said I want to keep coming here; when I asked him why he looked at me with those beautiful HUGE eyes of his and said “Mom, can’t you feel it?  God’s Here! and Josh likes me and my friend Mark comes here”.  How can a mom say no to that?

Maria:           Auntie Maria was Seaner’s second “mom”; a true friend since we came into Bill’s life.  Auntie Maria and her family have always been there to help when we needed it; she helped me when Sean was in the hospital and even took on a lab tech because they tried to keep me out of the room when they were going to run tests on Sean (one of my most treasured memories).  She was the one person that Seaner “wouldn’t share” with ANYONE!  When we would go out to dinner together I couldn’t even sit beside her – his preference was the wall was on one side of her and he was on the other so he could have her “undivided” attention.  If someone had to sit on the other side of her – it had to be her husband. J  I was relegated to only sitting across the table from her.  He would always say “Auntie Maria is my most favoritist person in the whole wide world”.  And why not - She would take him to the Best Buy in Ames because "it was better than the ones in Des Moines"!  He loved her more than anyone can imagine and I didn't love her the same I might have been jealous.

Congenital Heart Defect Month

Many of you know that Sean was born with a “Congenital Heart Defect” (3 actually): Atrial Septal Defect, Ventricular Septal Defect and Pulmonary Stenosis.  After several surgeries he lived a wonderful life but at 34 his wonderful and beautiful heart simply couldn’t beat any more.  

My favorite Sean story was when someone made fun of the scar on his chest and his reply was "That is my LOVE MARK - Mom loved me so much she made sure my heart worked, don't you wish you had done?"  

We were blessed to have him as long as we did and we encourage all of you to recognize the Congenital Heart Defect Month by giving a smile to a stranger; it won’t heal a heart but it will certainly help someone’s heart feel better with/without a defect.