Tristan is valuing communication more and more each visit when he is home. It is incredible for us when he shares his thoughts. We know he is constantly thinking, and now it is nice to know EXACTLY what he is thinking. Tristan grabbed his communication device and started planning his family time:
Tristan started requesting songs for Brian to sing and play on the guitar. For his song request, Tristan would sign to communicate what he was wanting. Because we did not have his communication device for this home visit–it was a bit challenging. Finally, I was able to pick up on what he was saying. He wanted several of the songs from this OLD VHS tape we had called “Bible Action Songs.” It has probably has been at least 10 years since we have watched this old VHS tape. Thank goodness for YouTube!!! I was able to pull up the exact video that I use to play for the boys. It was a great way to refresh my memory on what songs were on this tape. It was a fun time with Tristan down memory lane. Brian and I were a little surprised that Tristan remembered these songs. I always say the autistic mind is beautiful. We may not often know what he is thinking, but it is a blessing when we do.
On all our visits with Tristan since May, he has been trying to tell us something. It kind of sounds like “uncle.” In fact, the first weekend in May, we took him to a hotel for a shorter overnight visit. He would repeat this word over and over. We were not sure what the exact word was, so we did our best to distract him. It didn’t work out great, but what else could we do? Finally, I texted one of my brothers and asked if he would do a zoom call because Tristan keeps saying, “uncle.”
We enjoyed another successful communication weekend with Tristan. Only this time, he reached a new level in communication that we have never seen. It was A-M-A-Z-I-N-G.
He wanted to talk about his favorite things over and over and over, etc. So I took his tablet communication device and build a page with his favorite things. I made a schedule, so he knew “what was next.” He loved it so much he kept going back to it. Then he started verbalizing all these items. These are the preferred “conversations” with Tristan. Motorcycle ride. Mc Donald’s – and his entire usual order of chicken nuggets, French fries, BBQ sauce, chocolate milk. Church. Guitar. Cooking. Making Pizzas. YouTube. Movie Theatre – and his snack items which consist of popcorn, pop, and chips and cheese. If Tristan’s device was not right next to him, he would sign his thoughts. If we were not correct, he would repeat his word with a more clear annunciation. If we still didn’t understand, then he would find the button. This repetition went on for the complete 48-hour visit during waking hours.
At one point, Brian and I were trying to talk about something important. We finally had to tell Tristan to wait a minute; it is our turn to speak. Never in a million years would I have thought this would happen!
The other behavior we noticed is even though he wanted to talk about all these things, he didn’t necessarily want them right at this moment. He just wanted us to know he was thinking about them. So this was definitely an area of growth! I kind of forgot how much sign language he has absorbed over the years. I had to quickly jog my memory when he was signing. He remembered words we have not used in a while.
Enjoy the lighter side of autism and a reminder to never keep up on communication skills! You just may be surprised someday. (Here is a picture of him making pizza’s for lunch. He loves cooking activities.)
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!
I love hearing my 16-year-old son, Tristan, talk about anything. Since he has autism, his expressive language has varied over the years. He has fluctuated between one word and two-word phrases. He has sprinkled in a few sentences over the years. Currently, he is non-verbal most of the time.
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!
Yesterday we had a challenging day. He was just not content the entire day, and I know he can not help this. Lately, he has been more verbal on and off throughout the day.
He has been repeating the same thoughts. One of his thoughts is about wanting McDonald’s. At the end of the day; I tucked him in bed. I said, “Tristan what can we thank Jesus for?” I ask questions throughout the day. Most of the time I don’t get a response. This time, he did respond. This was his prayer, “Dear Jesus thank you for McDonald’s.”
Now we did not have McDonald’s! I guess I know what he is thinking about; even his prayers are about McDonald’s.
Enjoy another healthy dose of laughter from our home!
When our 12-year-old son, A.T., joined our family in November, it was quite an adjustment. A.T. was not familiar with autism. We have tried our best in teaching him what autism is and who Tristan is as a person. We know this has not been an easy adjustment. However, the other day A.T. shared his views, and I was laughing so hard. A.T. was sharing how he is trying hard to understand Tristan’s communications. Here is A.T.’s insight:
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!