My Vickie

This morning Jonathon came into the kitchen and leaned on me, which is as close to a hug as I get without having to ask for one. I said to him "I'm so lucky." He responded "what?" I repeated "I'm lucky because I have..." I paused waiting for him to give his input... he came up with nothing, so I filled it in with "I'm lucky because I have YOU!" To which he replied "I'm lucky to have you for my Vickie." Aaaah! I love him!

He Aint Heavy - He's My Brother

For all the siblings who carry a heavier load than most when their sibling has autism.

I found this in my husband's elementary school papers, which means it's like 40 years old at least, I thought it was a poem, but my older friends told me it's a song, originally sung by the Hollies.

HE AIN'T HEAVY - HE'S MY BROTHER



The road is long,

With many a winding turn

That leads us to who knows where,

Who knows where.

But I'm strong,

Strong enough to carry him;

He Ain't Heavy, He's My Brother.

So on we go;

His welfare is my concern,

No burden is he to bear,

We'll get there.

For I know,

He would not encumber me;

He Ain't Heavy, He's My Brother.

If I'm laden at all,

I'm laden with sadness

That everyone's heart isn't filled

With the gladness

Of love for one another.

It's a long, long road,

From which there is no return,

While we're on our way to there,

Why not share?

And the load

Doesn't weigh me down at all;

He Ain't Heavy, He's My Brother.

Tutoring

Jonathon tends to get a bit poopy when asked to do any type of learning activities that resemble schooling, so to help with the situation I found him someone to be the teacher to and not the student. He is now "tutoring" his second cousin, Mackaylee, who is four.

Today's assignment for Mackaylee was to read her a story, work on her ABC's and walk her to the library. (Not by themselves!)
When I asked him about helping Mackaylee learn her ABC's he rolled his eyes and said "UGH! I will sing that Mackaylee the song about the ABC's!" LOL!

It's a win-win situation for us. Mackaylee didn't have to go to daycare and Jonathon is now in a position of leadership, which in turn gives him something to feel good about.

Sometimes when addressing our kids needs... if going in the front door causes to many issues... try the back door instead!

Stealing

We ran in to Casper today to pick up some paint from Home Depot. Jonathon was struggling with echolalia so in an attempt to "turn off" the movies playing in his head I thought I'd talk to him about why we checkout at the stores and pay for our stuff. Yeah... the conversation didn't go as I'd planned... surprise, surprise!

I commented, " Jonathon it's important to go through the checkout and pay for our stuff because..." "With the dollars we pay for our stuff." "Yes, we use money to buy the things we want. If we walked out without paying for the stuff... (no response) what would happen?" Jonathon's response... "we will have our money dollars for Disneyland."

NOT the answer of, we could get in trouble, the police might be called, etc..., that I was looking for! Technically he is right! We would indeed still have our "money dollars," but it'd probably go toward court fees, attorney, etc...  Don't think I'll try to brooch the subject of court/attorney fees for not paying for our merchandise!

Oh Jonathon! You make me smile!

Search and Rescue

Here it is 11:30 p.m.. I should be in bed since I have to work tomorrow, but nope... I'm awake. Why??? Because the dreaded words have escaped Jonathon's lips once again, "I can't find my..." Tonight it's one of his MANY notebooks. I don't see sleep in my near future. I'd like to say this is an isolated incident, but sadly, it is not. We have been here before and I'm sure we will find ourselves here again.

I was thinking back on all of the "searches" we've done over the years and the one that tops the list would have to be the great search for Woody's cowboy hat.

Now before judging the lengths we go to when trying to locate a missing item keep in mind... the obsessing is UNIMAGINABLE! It consumes his thoughts, which in turn means after awhile of listening to the obsessing, I start to think a vacation in a padded room with a nice tightly wrapped white jacket would be nice, or at least... quiet!

Jonathon had many different  Woody figurines from the movie Toy Story that he had collected. He loved Woody's cowboy hats and still does. On this particular day, Jonathon had been out in the backyard playing, in falling snow, with Woody, when tragedy struck... Woody's hat was missing!

I looked around in the snow with Jonathon and Lindsey for awhile and then decided backup was needed. I called my sister who came over with her kids to help in the great search for Woody's hat. Tim came home from work to find us in the backyard with flashlights, examining the snow.

We searched until our hands and feet were numb and decided to give up the search till morning. After coming in the house and Jonathon being quite upset that Woody's hat had not been located, Tim grabbed a shovel and a flashlight and started shoveling through the snow! I believe it was around 10:00 that night when Tim came in victoriously holding Woody's hat! It took six hours to locate the hat! Tim actually shoveled our backyard, looking for a stupid plastic cowboy hat that was all of 3" in size!

I guess it's proof that sanity has no price!

Pretending

Coming home from our shopping trip in Casper (a 25 minute drive) I was trying to keep Jonathon off his movie talk. What a chore! Lately, he has been quite passionate about ‘Cloudy With A Chance Of Meatballs.’

We live in the part of Wyoming that does not have a lot of scenery to talk about. I can only comment on antelope and sagebrush for so long before Jonathon becomes irritated! Today I thought I would play  a game. I wanted to see what his idea of “pretending” would be. We’ve talked about “real” and “pretend” before, but today… he was not buying my game!

I said “hmmmm, if I could pretend I was an animal I would be an eagle! If you could pretend you were an animal you would be…” I paused for him to answer. His answer was “I’m a human boy. I’m not an animal.” I assured him I was aware that he was a human, but “if we pretend we are animals what kind of animal would you be? Like a dog or a cat? I would be a cat!” His response “I’m not a dog or a cat. I’m a human boy and you’re a human woman Vickie!” His agitation was increasing so I decided to drop the game. When we got home he said “I would be a cat with a costume” which is his way of saying “the only way you can be a cat is to dress up as a cat, because you are a human!” I know he’s thinking my Mom is crazy! She thinks she can be a cat but she can’t because she’s a human! 

He makes me smile!     

Back In The Groove

The holidays are over. Our daughter has returned to KY to finish up her Master's degree and we are getting back into our routine here at home... well kind of... we're learning a new routine, which is challenging, exhausting, but yesterday was so rewarding! Jonathon and I had the best day of communication between each other that we have EVER had. Absolutely beautiful!

We saw the autism specialists in Denver last Thursday and Friday. WOW! If I could encourage parents to do anything for their child it would be to find the money to take your child to TRUE autism specialists for an evaluation! Not to get a diagnosis (you likely already have that), but to see where your child is at and what can possibly be done for your child. I consider TRUE autism experts to be the people who are in the trenches seeing autism everyday. They see children/people with autism from the most affected to the slightly affected. They have been working directly with people on the spectrum for a number of years. They don't string you along. They give you tools to take home and use and their reports give you ideas and guidance on how to best help your loved one with autism.

We were first connected with Helen Nychka (a speech path & behavior specialist) out of Denver when Jonathon was in his sophomore (I believe) year of high school. Our school district brought her in to help with his programming and behavior. At that time, Jonathon was very isolated in an apartment rented by the high school for special needs students to learn lifeskills. He had two paraprofessionals with him during his school day because of his aggression. Thinking back to where we were and where we are... we have come a long way. We still have to get a hold on his aggression and I believe with this team of experts we will.

EVERY time I have met with Helen I have gone away with a little more knowledge and tools to try. Helen is one of the specialists we are continuing with in Denver. We are also now working with Katie Cooper, who is a psychologist, and Diane Osaki who is an Occupational Therapist & behavior specialist. They are an amazing team! From the moment we walked in the door Katie and Helen went to work on HOW we should be interacting with Jonathon. Amazing to see!!

Obviously I am very open about our experiences with Jonathon. If anyone has questions or comments please feel free to ask.

Have a great day and I am off to have a TRUE MEANINGFUL CONVERSATION with JONATHON!!! :)
My heart is VERY happy!!!