Stressful Situations

Kellen had a Special Olympics bowling tournament today. Although his anxiety is much better, there was too much noise, disorganization and commotion for him. He hung in there for a few frames, but after awhile it was just too much and he decided he was done and wouldn't get up for his turn to bowl. Too many people pressuring him to perform. Too many expectations. We left early.

Times like this are pretty hard for me. Leaving feels a bit like giving up. I start to feel a little sorry for myself. Bad thoughts enter my head. Thoughts like, "If my son is too 'disabled' for Special Olympics, what can he participate in?"

As we walked to the car, I was feeling sad and tearful. While I was waiting for Kellen to get in, I happened to check Facebook on my iPhone. One of my friends who has a child with autism had posted as her status, "Christine is telling you to handle every stressful situation like a dog. If you can't eat it or play with it, just pee on it and walk away."

Is it weird that reading that made my morning?

It was such a coincidence that Kellen and I had just peed on it and walked away and then I read that on my iPhone. I felt so much better!

So now I'm telling you to handle every stressful situation like a dog. If you can't eat it or play with it, just pee on it and walk away.
Let me know how that works for you : )

Valentines Day

Kellen has wanted a cell phone for a couple of years and he finally got one for his birthday in January. Since he got it, he hasn't been using it much, I think his main interest was in having his own, not necessarily making calls.

Today was an exception. Every time he saw one of us use our phone, he picked his up and started dialing. We were in the car this afternoon and Kellen had his phone out again. I asked him who he wanted to call and he told me that he wanted to call one of his uncles. I dialed the number for him and handed him the phone. His aunt ended up answering and somehow the phone ended up on speaker phone...which was perfect as we were able to hear her side of the conversation as well. If she didn't understand what he was trying to communicate, we were able to say the word on speaker so she could get it. The funny thing was, every time she didn't understand a word...instead of repeating it...he YELLED the word again into the phone. Did I ever tell you what a loud voice Kellen has? He can really project. It was really funny (but maybe not for Kellen's aunt whose ears are probably still ringing.)

After the call was over, Kellen muttered under his breath, "That was embarrassing." I've always thought that Kellen felt embarrassed, but this was the first time I've heard him use the word. I felt a little bad for him, but mostly proud that he was able to express how he was feeling which is a huge accomplishment.

Later in the evening Sweet Husband, Kellen and I went to a movie together. Sitting between my two Valentines, holding each of their hands, I felt incredibly fortunate and grateful. It doesn't get much better than that.

Life or Death

Last week I went to a workshop on communication and people with disabilities. There were parents, professionals and adults who experience developmental disabilities in attendance. The speaker was good, but the person who had the most profound effect on me was one of the self-advocates. He is a young man who is supported by the agency that I work for. I had only met him briefly once before, but haven't yet had the chance to get to know him.

He uses facilitated communication. While someone supports his wrist, he points to the letters which spell out what he wants to say. The speaker was talking about respect and this man signaled that he had something to say. He spelled out, "Respect is important to everyone. To me, respect is life or death."

A week later, I am still thinking about what he communicated. He is someone who people have underestimated for most of his life. His words cut to my heart. I know that Kellen feels the same way...life or death. Respect.

Hankenstein

My kid is weird.

Today when he got home from work he seemed a little hyped up. I decided to give him lots of space so he could unwind,take a break and relax. After awhile I heard him rustling around in the refrigerator, but I took my chances (that he could be making a big mess) and stayed in the other room. In some ways Kellen seems to be regaining some of the independence skills that were lost in the "fog" of the last year and a half of anxiety and depression...and I'm really happy to see that.

After awhile I went into the kitchen to check on him. He looked at me and said something that sounded like, "Hankenstein". Halloween was only a couple of weeks ago and I was wondering if he might have seen something that frightened him. I replied, "Frankenstein?" He kept repeating the word that sounded like "Hankenstein"...although it began to sound more like a request. I knew I wasn't going to be able to figure it out so I asked him to show me. He said, "On my bed." I was still kind of in the "Frankenstein" mode so I was wondering if he was thinking that Frankenstein was under his bed or something. That could explain why he didn't sleep very well last night.

I opened the door to his bedroom not expecting to see anything unusual. Instead, there lay a package of tortillas in the middle of his perfectly made bed. It was just lying there looking like it was waiting for something. It looked so funny and horribly out of place, I had to laugh. Picking it up, I walked back into the kitchen. Remembering that we had soft tacos a couple of days ago, I held up the tortillas and asked him if he wanted a leftover soft taco. He said yes...so I made him a couple...emphasizing the words "soft taco" the entire time.

I did kind of want to call them Hankensteins though.

More

Kellen and I have had a fun routine for awhile now.
One of us will say, "I love you."
Then the other one will say, "I love you more."
Usually the first person will then reply, "I love you MOST."
...and so it goes.

The other night I introduced Kellen to one of the young women I provide direct support to. Sheryl is someone who rarely uses spoken language...but really knows how to communicate. Well, they met and they immediately hit it off. (Kellen has a bit of a thang for older women.) They both had big smiles on their faces and Kellen skipped, "I love you," and jumped straight to, "I love you more!" This made Sheryl laugh and sign and say, "More." For the rest of the visit Sheryl referred to Kellen as "More."

As I reflected back on the evening I thought about how perfectly fitting this name is for Kellen.

Yes, he is more.

Sometimes more than I can handle.
More than I ever expected.
More than I deserve.
More than I know what to do with.
More.

I Wonder Where He Heard This One

This week Kellen revealed to us another new phrase. It's almost as good as the last one.

We were eating dinner and I asked Sweet Husband about his day. He was only seconds into his response when Kellen said, "It's not...about...you."

I'm thinking I'm going to use that phrase back on him very soon.

Doesn't This Just Sum It Up?

Kellen's new phrase this week is...drum roll please..."I not, the mood".

Translation: "I'm NOT in the mood".

It's his answer to lots of things from "Do you want to go swimming?" to "It's time for a shower." (Why do teenagers resist cleanliness?)



I not, the mood

Why does this new phrase make me smile?

For a couple of reasons. One, it tells me he is still learning language...and more and different ways of expressing himself.

Two...because it perfectly sums up the last fifteen months.

Three...because it is so...teenager.

Gratitude

“Let's be grateful for those who give us happiness; they are the charming gardeners who make our soul bloom.”
-Marcel Proust

"No one is as capable of gratitude as one who has emerged from the kingdom of night."
-Elie Wiesel

"Gratitude is a vaccine, an antitoxin, and an antiseptic"
-John Henry Jowett

"Everything that irritates us about others can lead us to an understanding of ourselves."
— Carl Jung

"Every breath we draw is a gift of God's love; every moment of existence is a grace."
— Thomas Merton

"I have sometimes been wildly, despairingly, acutely miserable, racked with sorrow, but through it all I still know quite certainly that just to be alive is a grand thing."
– Agatha Christie

Monkey Shout

A couple of weeks ago we went to Kellen's favorite place for dinner...The Spaghetti Factory. It's a great place to go with kids as there is always a loud din. As we were enjoying our meal, we suddenly heard a shrill toddler squeal from across the room. I'm sure you know that squeal I'm referring to...the ones that can shatter glass. Without missing a beat, Kellen said in a goofy voice, "Monkey Shout!"

I don't know where he got that phrase, but it really made us laugh and it was a very fitting description for what we'd just heard. Now it's stuck in my head and I've been saying it every chance I get. Excited about something? Say, "Monkey Shout!" Don't know what else to say? "Monkey Shout" will cover it. Try it...it's pretty fun.

Monkey Shout!

F Words

I don't tend to like words which start with "re" especially when people draw the "r-e-e-e" out such as in the word RE-model. I'm not sure why, maybe it's because it reminds me of the way I've heard some people say the R word.

Kellen often pronounces words which start with "r" as if they have an "f" as their first letter. The funny thing is, DQ did the same thing when she was little...she just grew out of it much quicker. Instead of calling their friend Rebekah, they pronounced it "Frebekah".

When Kellen buts an "f" in front of "r" words it can change the whole meaning. In fact, I usually like the word much better:

root beer = fruit beer
remote = freemote
recycle = freecycle
remodel = freemodel

I especially like that last one FREEmodel!

See how fun that is? Maybe it will catch on?

Nice Tattoo Ma'am

Yesterday, Kellen and I were at Target shopping for things for our new kitchen. I stopped to look at some cards and I heard Kellen call out in his very best Eddie Haskell voice, "Nice tattoo Ma'am."

It made me laugh...and in a way was better then telling a passer-by, "I love you!"

No One Gets Left Behind

This weekend was rough on Kellen. We spent most of it packing up our entire house. As we went from room to room, Kellen followed us. I could tell that he was feeling insecure and at loose ends. I could hardly blame him...all that's left in his room is his bed. No television, no dresser, nothing in his closet. It was stressful for him.

About three times over the long weekend I heard him say quietly, "No one gets left behind."

I have never heard him use that phrase before. The more he said it...the more I realized that he was expressing fear. He was feeling unsettled with all of the remodeling and packing going on. He wanted to make sure that he wouldn't be left behind. I reassured him the best I could that he would go with us wherever we would go. I told him that we will be going to stay in a hotel with us this week and it would all be okay.

This morning I started getting curious about where he heard the phrase..."No one gets left behind." Doing what I always do...I googled it. It's from the movie Lilo and Stitch. The entire phrase goes "Ohana means family, family means nobody gets left behind. Or forgotten."

It amazes me how resourceful Kellen is. He feels a feeling and connects it to a movie he has seen. He quotes the movie and is able to express himself.

Amazing.

Cheeses and Knives

I saw this button on Facebook a month ago and it still makes me laugh. Last week Kellen spent the night with his grandparents. It was a nice break for him from the chaos of the house remodel and when I came to pick him up after work he really didn't want to come home with me. I hung out for about an hour trying to figure out what would motivate him. I looked in my parent's refrigerator (which is generally fairly empty since they eat out a lot) and saw that they had some cheese slices. I asked Kellen if he was interested in some cheese and his whole demeanor changed. His face lit up. He stood up ready to come home with me.

Later when I recounted the story to Sweet Husband, he said, "Ohh...what a friend we have in cheeses."

Yesterday Sweet Husband and I were sharing a hug. Kellen looked over from the couch and said in a sweet voice, "husband....and knife." I think he meant "wife." At least I hope he did.

Lucky Fin

I've written about Kellen's toes before...but not told you that he has a unique one. They started out okay, but then along the way one of them stopped growing and bent upwards. We took him to a specialist who just shrugged his shoulders and said not to worry about it.

After Finding Nemo came out, we started calling Kellen's "special" toe his Lucky Fin. We wanted him to be proud of it and not embarrassed.

Tonight he and I were sitting on the couch watching television. He was looking at his foot a lot rotating his ankle around and around. Finally for the first time he said proudly, "Lucky Fin!" Like he had just discovered it for the first time. He said it a couple of more times for good measure. It made me laugh. What a cool kid.

Faded

Dear Wal-Mart,

I'm a woman over 40. What makes you think I want to wear a brand called "Faded Glory"? The juniors get a brand called, "No Boundaries"...but the mature women get "Faded Glory".

LOL...sigh.

Signed,
Not that far over the hill

The R Word

The R word...

No, I don't mean Revolution
I don't mean Recession
I don't even mean Racism.
I mean R*tard
I mean R*tarded

It is a hateful word used by bullies.
An archaic, hurtful word to demean, torment and even segregate people.

Why do we tolerate it?
Why do we overlook it?
It is not acceptable.

If you don't believe me...ask someone with an intellectual disability what they think of it...if you dare.

Andrea writes in her post Don't Say that Word:

No, it’s NOT “just a saying”. It’s an insult stemming from prejudice. Using that word in such a way continues that prejudice.

No, it’s NOT “just a joke”. Using it continues the abuse of disabled people by ridiculing and Othering them.

Please read her post in it's entirety here.

Watch Soeren's speech here.

Join the R Word campaign here.

Friday Inspiration

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength.

Being deeply loved by someone gives you strength, while loving someone deeply gives you courage. Lao Tzu

Music is what feelings sound like.

If your actions inspire others to dream more, learn more, do more and become more, you are a leader. John Quincy Adams

Heffalump

We are working on finding someone to come to the house and work with Kellen with the intent that this person could build trust and rapport with him and, over time, transition him into a pre-employment program.

This morning we met a couple of potential candidates. Our thought was that we would see who seemed to "click" with him.

Kellen has this endearing habit of giving people he likes nicknames. This can happen very quickly if when you first meet him you don't tell him your name immediately...but it can also happen even if you do. Today he met an older gentleman who was a little on the stocky-side...and had lot of humor and personality. Within two minutes Kellen had named him "Heffalump".

It seemed to be a very fitting name. Too bad this guy wasn't a follower of Winnie-the-Pooh and had never heard of a Heffalump.

Things That Make You Go....Hmmmmm

I was thinking the other day about Freedom and about Independence. When it comes to people with intellectual disabilities they are often not permitted to be as independent as they may like in the name of Safety. It seems that in the world of disabilities the opposite of Independence is Safety.

Then I started thinking about my own life as a person without an intellectual disability. It seems that in my life Freedom is offset with Responsibilities. I cannot be as free and as independent as I like...because I have Responsibilities.

It kind of made me go....hmmmmm.

What makes you go....hmmmmm?

A New Addition to the Rat Race

Did you ever see that movie with Cuba Gooding called Rat Race?


There is a scene where Cuba's character wants to steal a bus driver's uniform so he frantically runs into the men's restroom at a rest stop and concocts a story about his wife being outside and in the middle of giving birth. He says he needs the bus drivers jacket, and pants and lastly the driver's hat. When the driver asks why he needs his hat, Cuba says in an exorcist-type voice...it's for her...vaaagina. He so flusters the driver that he hands over his entire uniform.

Kellen saw the movie a few years ago, and at the time, Kellen would walk around imitating the v-word in the exact same dramatic way Cuba says it in the movie. It was one of those things where we wanted to laugh, but didn't dare take the chance of encouraging him to keep saying it.

Fast forward a few years to last night at the dinner table. I had brought a parakeet home from work for Kellen. A client no longer wanted her and even though we've never had a bird before, I thought Kellen might really like her. The bird's name is Suzette, but I thought Kellen might like to rename her.



I was curious to see which name he would come up with. I asked him a couple of times and he didn't respond. I know he likes Shania Twain, so I asked him if he might like to name her Shania. His response was, "No...GINE-A!"...said in the Exorcist voice. I laughed so hard I nearly joked on my dinner.

Somehow I don't think we'll be naming her that. D.Q. suggested we could name her Jay-Jay (in the same spirit as Kellen's original suggestion)...but I think we'll just wait and see which gem Kellen comes up with next.