What a Day.

Up early. Pink eye scare (just allergies though).

Deliver mosaics and help set up Special Artists Academy exhibit.

 News interview. That resulted in this story by Aaron Boll. 

Press conference with the governor.  I was given a signed copy of the bill that brought $750,000 to the Autism Projects.  Now the real work begins deciding on the specifics of how to use it to best serve the families.  So happy to be part of the decision making process.

 

Then the Special Artists Academy exhibit opening night.

This crowd was just as large as the crowd that gathered earlier to see the Governor.  Parents, teachers, community members, media and the artists themselves.

Here Chase views some of his contributions to the exhibit with Grandma.
 


Chase shows off his pottery to Miss Tobias.

Not only was visual art shown, but performing arts were highlighted.  Including a performance by the group 'Chosen Stars'.

This last piece was done during the Arts in Residence Program at Rivendale.  The artists from the Academy came into the school and spent the day teaching the children about music and mosaics.  I actually was able to volunteer that day.  It was wonderful to watch the children open up to learning about and experiencing art first hand.  The arts are a big part of our lives.  Yes, art is part of our bailiwick!

What a sister.  Nicole thinking of Chase on his special day.  Wishing she was closer.  She asked to be on the phone with him when he watched it for the first time.  After a hard day I could hear the stress in her voice melt away as she listened to Chase giggle that Spiderman was talking to him.  We love being a family.

Happy 7th birthday Chase!!

So sorry my sweet boy for the trick candles.  They were the only ones we could find.  Thus, three instead of seven.  What a trooper!

Thanks to the International Association of Amusement Parks and Attractions we were able to visit Silver Dollar City yesterday free of charge.
Not only was it a fun day...

It was a day full of generosity and kindness.  Of course, beginning with the tickets.  Then Nathan received 2 gold coins as a gift from Silver Dollar City.  Not quite sure if it was kindness that people in line kept reassuring us that it was okay to use our special pass not to wait in line or if they wanted us out of their line.  Whichever, they were kind and supportive.  Then after wondering the park hitting every boat ride trying to get him to the "boat" ride he kept asking for I finally figured out that what Nathan kept referring to was Geyser Gulch.  But, it had closed for the day.  I explained to the attendant who was closing it I wanted to show him that I did understand him.  That he didn't give up and his words brought us here.  But, it was closed and that is why we couldn't go again.  She signed with him, gave him time to see it was closed, accept it, and then gave him a special token from that area.

 

 Then at the end of the day.  We decide to stay for a free concert.  Tired and out of money (I only bring in what I intend to spend and leave all other sources of funds at home) Nathan asked for a drink.  And, our warm tap water just wasn't cutting it.  I took what change we had left and headed to the concessions.  Doubting that I would have even close enough I asked about smallest drink available.  As I was counting the coins I was asked about our visit.and intrigued by an answer more questions were asked.  Then the two serving reached across the counter and said it was enough.  

                                                              

I don't think anything ever tasted so sweet to Nathan as this liquid kindness.

What a wonderful day...

To all fathers and grandfathers of special needs children.  You are honored this day and every day of the year.

Please watch this video. 

Fathers of children will extreme needs have a special challenge, but even greater opportunity.  To be a father of a child that loves him unconditionally and is often completely dependent on him can bring joy that cannot be matched by any number of trophies, scholarships or popularity.  Your child will never judge you, always forgive you and love you more each day as they feel you taking care of them. A father of a child with special needs works to support them each day, fights their fights and rejoices in their every accomplishment.  Whether it be taking a bite of something new, saying a single word unprompted or just looking up as they walk in the room.  Fathers, you are all wonderful.  And, you need not be perfect.  In imperfection many great lessons are taught.  Today is a day we honor you, but we think of you each day as we watch our sons grow into men and our daughters learn to love others.  Happy Father's Day!

Forgot to post this.  Ashley Reynolds of  Kytv reported from Autism Days at Fair Grove last weekend.  I got the pictures posted, but didn't share the story.  All four of my children had a cameo. Way to support the  
Missouri Autism Report publication!  
Thanks Ashley!

Nathan's X-ray

What a funny trip to the radiology department.  Chase had gotten a scratch on his leg at school which was consequently & successfully treated with a band-aid.  But, once he heard Nathan was going to get an x-ray he started limping insisting he needed an x-ray too.  He was limping so badly in the parking lot I had to stop him before he really did hurt himself.
When they called Nathan's name we stood up from our seats and Chase limped along.  The radiology tech looked a bit puzzled.  I am sure she had already seen the order for a bone growth delay x-ray, not a twisted ankle.  Boy we are approaching 'typical-ness' more and more each day.

Harvest Day!

 

Today Chase's class made salads from their school garden.  I could not be more impressed with a program than I am with the boys' school.

We are one of the lucky ones.  Chase loves vegetables!  He was in heaven during this project.  He actually ate two salads.  We have to watch him so that he doesn't eat too many raw vegetables.  He has made himself sick before.  During holiday dinners we have to guard the veggie tray, especially if it has cucumbers on it.  But, I would be amiss if I did not mention that he loves cookies just as much as he loves vegetables.

The warm weather has brought on pool weather.  We love our generous neighbors who let us swim in their beautiful pool.  Nathan loves the pool.  He has more language in the pool than in most other places. 

Chase in 2011.

But, it does present a problem.  Nathan elopes. He takes off, wanders off or just goes after what he wants.  And, I am like most parents...I think it won't happen to my child.  I picked this up off the AWAARE website just last night:
In 2012, the National Autism Association found that from 2009 to 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with autism subsequent to wandering, and that 23% of total wandering-related deaths occurred while the child was in the care of someone other than a parent. 
 

 I lock the doors.  We watch him close.  Someone always knows where Nathan is.  But, I think it is time.  Time we look a little deeper at safety devices and wandering material.  There is a lot of information available.  We wait for that close call to act.  Why?  IDK, as my daughters would say.  Not this year.  He is getting older, we stress independence and rejoice that he is taking some initiative.
But, there is often more to consider when you have a child on the spectrum when you are taking safety measures.  I had a jolt a few months ago.  A warning of sorts.  Nathan's school takes water safety very serious.  The students in the autism program have swim lessons.  They board their little bus and go to the pool.  Nathan is beginning the process of learning how to swim without supports.  When his instructor let him go under water Nathan sunk. He just quietly slipped under the water.  It was reported back to me that even babies have a reflex that will propel them up.  Maybe not successfully, but it should be there.  Nathan had none.  Those present were horrified as they saw him sink in the water, without panic or response to what was happening.  One even said it was like he was just waiting.  Even now as I write this I feel an overwhelming sense of dread.  His lessons now include learning to float on his back.  We have a long way to go.  The importance of learning to swim drives the effort to teach Nathan (and Chase), but protecting him now is VITAL.  Time to look at alarms, alerts and make a plan.  One important message that the AWAARE site presents is that if a child is missing CHECK WATER SOURCES FIRST!  Advice I will always heed and teach my family.

'Cause some days are just that good.

Cherish your friendships. 
They enrich your life and can bring you peace.

Last Game of the Season

                                              Say it in pictures...

Nathan at third waiting for a ball.

Miss Allison was Chase's buddy tonight.

Chaseman

Sharing a moment with his teacher.  She came to see him play.

After!

More teachers...or should I say Miracle League fans.

The trophy.  Tonight was the last game of the season.  See everyone in the fall.

Thanks to our coaches.

Sweet success of a well played game.

Nate the Great!  Done for the season.  

Planning to practice in the off season.  Such a wonderful field built with some very special kids in mind.  So glad we have become part of this wonderful organization. 
And yes that is Chase running to home on the website.

Some days are hard...  He is so tiny in this picture.  So many years have passed.  He will be 10 in August!  This morning he was trying so hard to button his church shirt.  He didn't cry, he didn't get upset.  He just kept trying.  He didn't rejoice when he did it.  He knew he was struggling.  I sat on the bed and I pushed the button from the back and he pulled it through.  He couldn't get his two hands to work together, but he never quit. And neither will I.  We can't quit.  We need to try every day.  
His language, that is what we need to find.  He keeps losing it.  We build it up to a certain point.  Then it is gone.  Retention.  How do we do it?  This time it is not rebuilding like the other times.  He is frustrated tonight.  Tomorrow will be a good day.  The roller coaster will bring on the vocals.  Love my little guy.

Autism Fair-MAR fundraiser

Willis Tower in Chicago, Skydeck 103rd floor

Back from her band trip...

One thing I have tried to stress to my children is that the choices they make today will effect the opportunities they have tomorrow.

So did I use the word effect right?  I actually looked it up.  The quick rule that affect is a verb and effect is a noun is only 'mostly' true.  But according to Grammar Girl...

And, effect can be used as a verb that essentially means "to bring about," or "to accomplish." For example, you could say, "Aardvark hoped to effect change within the burrow."

She traveled with her band-mates to Chicago's Magnificent Mile, Navy Pier and the Willis Tower.  She went to the Museum of Science and Industry.  Traveled to Ohio and went to Cedar Point.  Finished up the trip at the Rock and Roll Hall of Fame with lunch at the Hard Rock Cafe in Cleveland.  And, came home with presents for everyone!  What a gal.

 

  Back from Scout Day Camp.  Nathan and I arrived just a few minutes after 8:00 yesterday morning.  I put on my camp shirt, but I guess I should have known better than to put his Lego Star Wars shirt.  There was no getting him to take it off and put on a neon green t-shirt.  Peer pressure doesn't work on him, he couldn't have been less interested that all the other boys had on the same shirt that I was trying to get him to put on.

  It was a beautiful morning, not too hot.  After the usual ruckus of trying to get hundreds of boys to their appointed stations, we made it to his.  It was a discussion on the solar system.  Naming the planets, learning how far they were...and that was as long as he lasted.  I do work with him on participating and try to help him learn about being part of a group.  But, when things are so out of his area of interest and understanding I have to really think about who I am doing it for.  Is it for him?  Is it for me?  Or is it for others?  

  Unfortunately, we as parents are not as immune to peer pressure like so many of our children.  Even after 19 years, a combined 34, of the autism experience I still feel pressure at times.  Most of it not by individuals, but by societal norms.  Nathan is nine and I know if pushed him he would have sat there, not understood, giggled the whole time and been a great distraction.  

  So I made a choice.  He didn't want to be there, clearly.  So we walked around the camp grounds and looked for groups that might be interesting to him.  We spent a few minutes here and there.  Went back to our camp site and sanded a project.  Then we decided to join the cave tour instead of waiting for our troop's turn that was scheduled at the end of the day.  He had a good time and the troop we joined were welcoming.  After that I couldn't talk him into staying for lunch.  He was ready to go.  He was happy, but it was time.  Our first attempt at a 3-day camp lasted 4 hours.  SUCCESS!

My post for tonight was going to read...

Excited, Scared and Unprepared

Me, Nathan and non-aerosol Bug Spray

Boy Scout Day Camp with Nate in the morning!

After going to pick Samantha up, losing an hour, but gaining 2 roasted marshmallows (Chase had 4).  Life seems so simple and I can't wait til tomorrow.

It is really interesting how we take our kids who struggle with social skills and relationships; put them in a group and hope they will play together.  Others might laugh at the absurdness of our thinking.  But, when it works.  IT IS MAGIC!  This is why we try.

Another wonderful game.  Of course technique has evolved.  The balls that drop right in front of the tee become fielded in left field (with just a quick kick or toss from the player's buddy).  A ball in play now gets tossed around from player to player before returning to the pitcher.  We want team members to have the opportunity to participate.  So we create opportunity.  And a grandpa pinch hitting is highly acceptable.

And oh, the end of the game.  I love it.  Both sides get together and sing, 'Take Me Out to the Ballgame'. 
They are even learning the words.  I can't wait until next season.

Having issues with my Internet. Trying to squeeze in a quick post before it goes out again. I have a wonderful post from this past evening. But, it will have to wait until tomorrow afternoon. In the morning we are off to the zoo with schoolmates and then to possibly jump in the neighbor's 'p','o','o','l'. Fortunately Chase did not crack the code. You never know what the day will bring. But, he did want to know why we were going to jump in letters.

Relay for Life is always amazing...this year was no different.  

 

I wish I had made a longer clip of this beautiful song, 

my only regret.

(Although there were bratwursts that I did not partake of, so maybe two regrets.)

The nights ceremony included this beautiful song, torchbearers and a lap around the track for everyone who has lost a loved one to cancer.  The lap was in silence.  Well, it was supposed to be in silence.  We were walking in memory of Aunt Sherry, a joyful and dedicated mother.

The problem(?) is whenever Nathan feels a strong sense of love or spirituality he gets giddy.  It was all I could do to keep him upright.  He was having deep belly laughs intertwined with joyful squealing.  Even though we only got looks of support and slight smiles I took him from the procession so he wouldn't be a distraction.  It was a beautiful night all around.

But, it made me think of how so many of my friends commonly report situations of judgement when they are in public.  Fortunately I rarely feel the judgement of others.  I do sometimes I suppose, but I have learned over my many years how to remedy that type of situation before it even begins.  My methods include avoidance, informing and explaining.  

For avoiding, if I feel the eyes of judgement upon me I don't make eye contact.  I don't given them an opportunity to feel like they have an opening to state their opinion.  I don't look to the ground or display timid behaviors I just look past the guilty party.  Next to inform I do something to let curious eyes know that things aren't always as they seem.  I don't announce that my children have autism.  But, I discreetly sign to them, mention therapy to a sister or congratulate them on a behavior and tell them their teacher will be proud of them.  Then there are times when I do explain.  If someone says something offensive I don't try to excuse my child.  I just tell the offending party they are rude.  But, there are times when I do speak up and take the time to bring awareness to an individual.

An example, that I actually cherish, happened over 6 years ago.  In the grocery store Nathan yelled in a harsh inexperienced voice that he wanted an item.  A woman standing close to us said, "I guess they don't teach children manners anymore."  I looked her in the eyes and with patience said, "Well, I have worked with him for over a year on being able to make a verbal request and I will take it anyway I can.  I will not offer discouragement to him with some of the first words he utters."  Then I let her know I am a huge believer in manners for children.  She apologized and we laughed and chatted.  She ended by saying good-bye to my son and telling him what a big boy he was.  

She changed my life.  I learned if you give people a second chance they will often make things right.  And, I hope she learned from us not to be so quick to voice a negative opinion.

What a night!  We made our traditional trip to Dickerson Park Zoo

for

DREAMNIGHT AT THE ZOO

Fifth year photo!

 
We make this annual trip to the zoo with as many family members that can attend.  It was the four of us this year.  We saw so many friends it was like a reunion of sorts. During our trip it occurred to me how we, especially parents of children with autism, just go with the flow.  We say hello, get in as much conversation as we can as we keep our children moving and focused, and never a thought of resentment about time and conversation cut short.  Knowing the next time we run into one another we will rejoice in our friendship for another 3 minutes.

The watermelon squash with the bears.

       
Dreamnight began in 1996 at the Rotterdam Zoo in the Netherlands.  By 2011 there were 216 partners from 38 countries that have an annual cost-free evening for children with chronic illness and disabilities, and their families members.  The event is most often on the first Friday of June.

What a happy man.  I love when he smiles.

Special events this night, including animal interactions.

Free train rides.

Me and my guy.  Well, one of them.

I love seeing this.

We are on facebook now.

Join us there!