Parents' Corner
October 2009
"SLP’s visit the world of AAC;
We live it"Colin Portnuff
AAC user affected by ALS
By Robin Hurd
Every once in awhile people ask me, “What is a normal day like at your house”. Often, I laugh and reply that there is no normal day. I think that it might be worthwhile for me to write about a day in the life of my family, though, to give others a glimpse of the realities of life for those of us who live in the world of AAC . When people try to picture what life is like in our family, with two children who have physical disabilities and use AAC, sign, gesture and a little speech to communicate, plus one child who is verbal but on the autism spectrum, plus a normally developing junior in high school, they make one of two mistakes. They either imagine that life is pretty overwhelming and sad, or they watch us do the same things other families do and imagine that life is more simple than it is.When I decided to share a day in the life of my family with you, I picked a day that is a good blend of having to get things done and relaxing with the family to share with you. The events of this day happened on Sunday, September 20th, 2009.
7:00 am. Josh and Caleb wake up. Josh heads to the bathroom removes his nighttime diaper and goes to the bathroom, heading out to the kitchen when finished. Caleb comes into our bedroom to find me, hoping for some snuggle time with mom. Our oldest son, John has been up for a while. Our middle son, Wesley, will need to be awakened soon if the activities of the twins don’t do the trick. Our goal is to get to church by 8:30 am.
7:30 am. Our home aide arrives. She finishes feeding breakfast to the twins and dresses them while the rest of us get ourselves together for church.
8:15 am. We should be leaving the house right now, but we are still loading the car. Josh and Caleb are both in the car, but John is still finding his shoes and I am still gathering AAC devices, notebooks, writing utensils and gum—essentials for a successful church experience. Wesley is trying to make sure that no one will turn on the CD player in the car. His sensory issues are at their worst when he isn’t yet fully awake. We keep the music off for his sake.
8:35 am. We get to church as the congregation is singing the first song—not too badly late! I position myself next to Caleb, who is most likely to want to talk and be disruptive during the service. As the song continues, Caleb’s head is bobbing in time to the music. Josh is smiling broadly. They both enjoy music so much! The service continues, and we use signs and gestures to communicate as needed. Josh wants gum to chew. Caleb wants to know if/when there will be more singing. Then he signs to me about the content of the sermon. Both boys ask for their notebooks. Caleb starts me out writing sermon notes for him in the words and pictures method he and I use. Soon, though, he grabs the pen and begins to try to write his own name. Uh oh! Josh has to visit the restroom. Signed conversation determines that he can’t wait until the sermon is over. So he and Dad head out. We finish the sermon with no loud outbursts of speech or communication devices. Whew! Afterwards, the woman behind us compliments the boys on how good they all were in church, then tells me that her son(now an adult) had ADHD and she struggled to know how to deal with him. We walk the boys up to their Sunday school class and get their AAC devices set up for them. Caleb is pleased to notice that the class is mostly girls. He will be anxious to show off for them.
After church, Joshua asks if we can have a picnic. It is a beautiful fall day and the kids don’t’ have too much homework left to do, so we decide to do it. Our destination is a park about 45 minutes away (so we think!). We go home to get into our picnic clothes and grab what we might need: Frisbees, running clothes for John, who must do an hour or so of running today, and spare clothes for Josh and Caleb just in case of a toileting accident. Then we grab our lunch at Taco Bell and head off.
As we drive towards the park, we are discussing John’s upcoming birthday, and what he wants to eat for his birthday supper. He chooses lasagna for the main course, and apple pie for dessert. Josh and Caleb try to convince him that he should have chocolate cake instead, but it doesn’t work. 45 minutes away from home, we realize that we are probably on the wrong road! A quick call to my in-laws confirms this, so we spend a few minutes cutting through the countryside trying to correct our course. Josh and Caleb are happy to be taking back roads full of twists and turns. Wesley is not thrilled! He is prone to car sickness. How could the grown-ups be so dumb as to get lost? We enter Amish country just about the time he is really starting to get upset. This is a clue that we are getting close, and also gives him something to think about besides being lost and possibly getting carsick.
1:30 pm. We finally arrive at the park and eat our lunch. David and I take turns feeding the twins. There are other children there, who are rolling down the steep hillside. Josh and Caleb are watching this closely. A walking stick bug drops out of the tree and crawls on Dad. The boys have never seen one before. Caleb is a bit worried about what it might eat (does it eat dads?). He is reassured to hear that it won’t bite people. After lunch, Caleb tries to work the old fashioned water pump. The handle is very tough to push, but he keeps trying! We take Josh and Caleb to the bathroom; it has a composting toilet—a new experience for them. Thank goodness they are willing to use it! As John and Wesley enjoy the scenic overlook and try to find all of the landmarks they might possibly see, Caleb has a great idea! He wants to roll down the hill like the other kids were doing. He gets himself down on the grass, then tries to roll—forgetting to put his arms tight to his body. John gives him rolling lessons. Pretty soon Josh is also on the ground trying to roll. This is one of those things that normally developing kids do, that we hadn’t thought about until this very moment. As we watch the guys rolling on the grass, It’s a reminder that they really aren’t that much different than other kids. Then we have to help them back up the hill, and it’s a reminder how much differently their bodies do work, after all!
We load up the car and head out. On the way home, we smell the ripening grapes in the nearby vineyards. The smell like grape Kool-Aid will grow stronger throughout the fall, but we are glad to have our first whiffs of it today. Today we are grateful for Wesely’s super sensitive nose!
Near home, we stop and drop off John at his usual workout location, so he can do his running. Then we head home. One of us will pick him up after we get everyone else settled at home.
4:00 pm. We are home now. Wesley is started on his homework. Josh and Caleb have work to do, also. They’re working on a presentation about immigration for social studies class. We are downloading pictures from the digital camera of things in Grandma’s house that came from Germany. The plan is for the boys to tell their friends about these photos. But the process of getting them downloaded from 2 separate cameras is not going as smoothly as we had hoped. We break for supper, and one of us goes back to get John.
5:30 pm. Supper time. John is back home now, and we are eating our usual Sunday evening supper of pancakes. Right after supper, we need to complete work on the twins’ immigration project. They remain in their special positioning chairs to make this as easy as possible on their bodies and to keep them both focused on the task at hand. The boys write their project word by word using their AAC devices instead of the computer. Our goal with this assignment is to explain about the things at Grandma’s house and to note the differences between these things and “American things”. Caleb is fired up to talk about the photos. He is connecting with the stuff he sees when he visits grandma’s house, and has enjoyed the story of the man who came to America and the things his mother sent him from Germany. Joshua keeps wanting to talk about a phone in the kitchen. We don’t’ understand why, at first. It is getting frustrating for all of us. David is focused on getting him to say something about the picture he is supposed to be describing. I am focused on trying to figure out why he keeps telling us about the phone in grandma’s kitchen. Then I realize what he is trying to say! The mom in the story of the man from Germany sends him letters. But Grandma just uses her telephone when she wants to tell Dad something. Josh IS on task, after all! He has noticed an important difference between life in the 1850’s and life now. It took us about 15 minutes and plenty of frustration from Josh as well as the adults to figure this out, but we did it! In the process of trying to figure out what he was telling us, I opened the demo software on my computer, and used it talk to him. I think having mom use a device too helped up work through this process a little better than if I had just been speaking. If nothing else, it slowed me down so Josh could process what I was saying better.
7:30 pm. We begin the bedtime routine. We push the boys around the block in thier positioning chairs(they are worn out from the park) and visit a bit with the neighbors. Then it’s medication, a stop in the bathroom, a story, song and bed. No one is very anxious to goof around at bedtime tonight… they are glad to doze right off by 8:30.
8:30 pm. It’s time to talk with the older boys about their homework. They each have something that needs printed, and I need to print out the twins’ project, too. So we work out who will use the printer at what time, and begin the process of finalizing homework. This is our time to re-group with the older 2 boys and sort out everyone’s schedule. Often, we use this time to read aloud something enjoyable. Tonight, though, there’s too much finalizing homework to do.
9:30 pm. The older boys are headed to bed now. Their homework has been printed. John may have a few more things he’d like to get finished, but the homework that must be done tonight is complete. David and I take our usual walk around the neighborhood now, with a cell phone in a pocket just in case the older kids would need to get a hold of us. This is our chance to talk or just relax from our busy day. Today has been a pretty good day. We enjoyed the picnic with the boys and no one had a meltdown when we got lost on the way there. Though we struggled to understand what Josh was thinking as he worked on homework, we were able to work through it until we figured it out. Sometimes it might be hours later before the “dumb grown-ups” figure out what he was trying to say, so 15 minutes was not too bad!
10:00 pm. I print the boys’ immigration project, write notes in their home-school notebooks and check to see if the AAC devices need to be charged. The day has come to an end, and we will be ready for tomorrow when it comes.
As always, feel free to e-mail Robin Hurd at parents@aacinstitute.org with any questions or comments.
NEW!
AAC ConsumerNet ----- Check it out!http://www.aacinstitute.org/AACConsumerNet
Your feedback is always valued. parents@aacinstitute.org.
