Communication Progress

Tristan’s first weekend home was outstanding. However, one behavior we noticed is that he stopped communicating. Tristan did not want to sign, talk, or use his device. Sometimes I think it is due to his medications that have switched several times over the last few years. My heart was sad that he lost his interest and ability to communicate. I decided we would work on it when he was home as much as possible. I used his tablet loaded with Proloquo2go to ask him choices.

Last Friday night, Tristan was home for the weekend. All of a sudden, he started signing. He asked for popcorn, chips and cheese, and pop. Brian and I quickly realized that was his usual order at the movie theater we take him to. It has been over a year since we did that activity! Tristan got excited and flapped his arms when we asked him if he wanted to go to the movies. He said, “Yes,” Tristan went on to sign and say, “church.” We asked him if he wanted to go to church. He said, “Yes,” and twirled around in a circle several times. He then went on to give his McDonald’s order with his device. The usual order: chicken nuggets, barbeque sauce, French fries, and chocolate milk. We were very excited that he came out of “his world” to communicate with us! We could see the excitement in his eyes as he was understood.

We had a busy Saturday going to McDonald’s to pick up lunch and ate at a park. Then we went to the movie theatre for his snack order and watched a movie. Sunday morning, we went to church and listened to the music.

When communication increases, then frustration decreases, and that made a successful home visit!

Best Mother’s Day!

Finally, our Tristan was able to come home for a home visit! It has been a l-o-n-g fourteenth-month wait. Our home became lively with our forever toddler this weekend. YouTube played his favorite songs (the same ones over and over). Sleepless nights resumed. Melissa and Doug toys were brought out of the closet. Clean-up duty was continuous. Older brother, Jacob, interacted with Tristan. He gave him a few surprise snacks. Takeout was ordered at McDonald’s! It was a blast. We attended church for the music portion of the service. We would not change one minute of our time with our forever toddler. We had a blast and can not wait for the next visit in two weeks.

Happy Mother’s Day to all!

The Great Lightbulb Mystery

The other week I dropped Tristan off at his group home.  I chatted with one of his group home staff, Benny.  I told him Tristan had a great weekend.  I asked how Tristan has been for him.  He filled me in on one of Tristan’s antics.

Benny said, “I went into the bathroom one day and there were 3 lightbulbs sitting on the bathroom sink counter!”

I chuckled as he said this.  That is definitely a Tristan thing. Over the years,  Tristan has been fixated with light bulbs at home. This is a phase that comes and goes.  Apparently, it is back!

This conversation made me think of some of the other light bulb stories tucked in the back of my mind.

At one point he wouldn’t stop unscrewing the lightbulbs in his bedroom ceiling light fixture.  I actually had to tell a new respite worker, “When it gets dark outside Tristan’s room will be dark because he has lost the privilege of having light bulbs.”  I thought to myself “Who say’s that?”  (Parents like me who work 24/7 to keep their special need child safe!)

Thankfully, the worker said “I understand and I don’t judge.” Inside I was thinkging. Whew! And a quick arrow prayer: Thank you Jesus.

For a period of time….

He would unscrew the light bulbs from the front and back porch lights.  We would wait until he was sleeping and the we would put a light bulb back into the socket.  Then in a day or two the light bulb would be gone! When we looked over the porch railing we would find it on the ground.  Broke from the fall into the mulch, but not shattered.   After replacing the porch lights a couple of dozen times with no further success, we gave up.  He won!

We finally had to tell visitors ” Wait there’s no porch light” and quickly install a lightbulb. If company was on the way we would install a light bulb 5 minutes before the arrival time.  Seriously I am not making this up.

I wish I could ask Tristan “why?” Instead I am left wondering what is his hidden message. We know he does a lot of things for attention. Does he do this to say “Look you didn’t pay attention to me for 3 minutes so this is what I can do?”  Or is trying to complete his own personal challenge like “Let’s see if I can do this before someone catches me.”  Sometimes, I like to believe these are little love notes that he leaves.  Like “Hey I’m thinking of you and I want you to know it.”

Like I often say to him, “Tristan when we get to heaven I have a lot of questions for you.”

I hope you enjoyed another healthy dose of laughter from our home!

Photo by Pixabay on Pexels.com

 

It Never Fails…

In these cold winter months, our activities are limited when Tristan is home on the weekends.  We have discovered taking him to the movie theatre is enjoyable for the three of us.  We pick kids movies with songs.  Even so, we know he is only paying attention to portions of the movie and that is fine.  We know his ultimate goal is to empty the popcorn tub and consume his pop!  We have begun requesting smaller portions to out smart him.  One thing never fails,

Name This Award

The last few days we have been bombarded by the same questions from Tristan. Here is the list.

The Secret Code Part 1

Remember the toddler stage of speech for children?  That is when close family and friends can interpret the words or phrases?  Our house is no exception!  Tristan has been in the toddler phase of speech for 11 years.

One day when our friend was helping us with Tristan. Brian quickly gave Tristan a verbal clue to stop.  Brian said, “Bep!”  Immediately Tristan stopped and did not go into a room that he is not allowed to enter.

Our friend said, “Bep!  That is the word I needed to have for him to stop?  This information would be useful to know!”

Brian explained, “Yes that is Tristan’s version of stop.  Sorry, we didn’t fill you on it.”

We all kind of chuckled.  It made me think, “What else do we say that is code?”

Enjoy another healthy dose of laughter from our home!

Home Sweet Home

Just a quick update…

Tristan’s Final Night of 2015

This New Year’s Eve I was preparing to spend a quiet evening at home.  It was just going to be me and Tristan.  Brian took the two older boys out for a game night with friends.  One teenage son was concerned that Tristan would be difficult for me at home.  I confidently said, “It will be fine.  Tristan will enjoy a quiet evening at home.”  Little did I know how the night would unfold.

Today’s Score: Tristan-2 Mom-0

In this game of life I sometimes keep score Today I am not winning.

Duped!

Two days in a row I had to clean the back seat in the car. Two days in a row Tristan had an accident in the car after swimming at the lake.  The first day I changed him out of his clothes and he would not use the restroom.  Let me just say, you can NOT make a child go to the bathroom.  You can encourage and prompt, but that is it. This was one of those times.  On the second day, I changed Tristan and forgot to take him to the restroom.  By the third day I announced to my friend, “I am ready for today.  I am going to put him in a diaper after we swim, because I don’t want to clean the car AGAIN!”  On the third day, I changed him out of his swimming trunks and into a diaper.

Now before I go further into this story, let me give some information on autism and sensory issues.  Children/adults with autism have sensory issues.  They process sights, sounds, touch, taste, and smells differently than other people.  Children/adults fall into two categories,  They either avoid sensory or seek sensory.  Tristan seeks out sensory input.  He will rip a book to hear the sound.  He will play with confetti tissue paper to feel the texture.  He will dump soap to watch it drip or spill.  I know this sounds strange, but Tristan likes the feel of a wet diaper.  I don’t know why.  Therefore he is often dumping soap into his diaper or dumping a cup of water in it.  I hope I have given you a quick understanding of sensory issues.

Now I will continue this story

After swimming, Tristan was fine with the plan of wearing a diaper.  On our way home, I stopped at the gas station.  Getting into the hot car suddenly made me thirsty,  So I bought a soda.   I shared a soda with Tristan by pouring some into an empty water bottle.  I finished pumping gas and then drove away.  A few minutes later my friend said, “I should have known this was going to happen.  Tristan poured the pop down his diaper!”  All I can say is I really felt duped!  I thought I had this day all figured out.

Someday when I to get to heaven, I have many questions to ask Tristan!

Enjoy another healthy dose of laughter from our home!