When Aden and Alex were born I can’t tell you how many times I heard, “I bet you wish they came with an instruction manual?” Despite having twins, the first year was easy compared to what I deal with now. I never needed an instruction manual. Fast-forward to our autism diagnoses…now I could use a manual. Unfortunately, there is no such thing, but I have discovered the next best thing: Parent Training.
Initially, I wasn’t keen on the idea of parent training. I had received previous training from Infants & Toddlers and I participated in “Jump Start” another parent training at CARD when the boys started their intervention at two years. I thought it would be redundant and I had a million and one other things I could be doing.
Each week, we were encouraged to send pictures of our family. Our trainer, Jenny would create a PowerPoint slide to show in class. We began each Thursday by sharing our simple joy for the week. A simple joy is just that: simple. For me, my days and weeks are challenging and at times seem joyless; this forced me to find the good, no matter what that may be. I also enjoyed listening to everyone’s simple joys. It was an instant mood-enhancer. Here is the list of my simple joys:
“Aden and Alex are both responding to their names and can tell you their names when asked as well as the names of others”
“Aden said “I love you” at bedtime” (Who cares if its echolalia, it sounded adorable)
“I love listening to Aden sing Christmas songs and watch Alex pretend he’s going to visit Santa at the North Pole”
“Alex said “thank you” without prompt on Christmas morning after seeing his new playroom”
“Jon and I are going away for our 5-year anniversary”
“Aden used a new 3-word sentence: “take off coat””
“Aden is making progress with functional play; he brushed a doll’s hair and teeth”
“Alex is answering appropriate yes and no questions…before everything was yes”
“Aden is opening his mouth more and starting to repeat words”
“Alex told me what he did in Ms. Lauren’s class without prompt… “I play penguin game with Rhys, I get 8 fish!” (Ms. Lauren confirmed)
“Aden made a caterpillar in class, he brought it home and offered it some of his snack, “you hungry?””
“Alex built a Lego car and brought it to me to show me!”
Click here to see the video, I was so proud! http://youtu.be/rQzBNgyqi7A
“Finished up the SEED study, the blood draw went smoothly”
“Alex told Ms. Lauren what he was doing after class: “go to store and get cookie””
“Both sat on the Easter bunny’s lap for the first time in 3 years!”
After our simple joys, Jenny introduced our topic for the day. Throughout the class, we would share our experiences and ask questions. Almost every class I caught myself thinking, “this is common sense” or “why didn’t I think of that?” These thoughts were my “a-ha!” moments and they occurred regularly for myself and the other parents.
We were given homework (a way to practice new strategies) and therapy diaries to fill out (a daily record of the time we spent working on the strategies). Homework and diaries seemed like daunting tasks. It was something else added to my already full plate. However, the homework and diaries helped me stay on track. It forced me to stay on track. I can honestly say I may not have followed through with practicing all of the strategies had I not been given homework and specific directions.
I started to pay more attention to Aden and Alex. I noticed they played alone; they didn’t attempt to play with me or each other. They didn’t always play functionally with toys and would quickly lose interest in a toy and move onto another. It was difficult to watch but I learned what we needed to work on.
I think about parents I encounter on a daily basis. Whether it’s at the library or the playground, I see parents of, I assume, typically developing children, reading books, playing on their phones or Ipads or conversing with other parents. In other words, they’re NOT paying attention to their children. They’re not fully engaged. For me, this isn’t an option.
At home we started establishing routines, specifically song routines. The two most important things I learned was the effective use of pausing and that music must have meaning. I was familiar with pausing and have been using this strategy but I never thought about song lyrics.
Since I was having trouble getting Aden and Alex to clean up their toys, I created a routine. My usual attempt at clean-up consisted of the infamous Barney song, “clean up, clean up, everybody everywhere, clean up, clean up, everybody do your share”. Yes it is a catchy tune, but Aden and Alex don’t understand the words. Time for a change! With a large toy box in the center of the room, I changed the words to “put the toys in the box, in the box, in the box, put the toys in the box, Clean. Up. Toys. While I sang, I made sure my actions matched the words. I would also pause at “box” allowing them to fill in the blank. Both were able to participate when I simplified the language and created a routine. Here is a video so you can hear the tune of the song (pardon my singing voice, I’m no American Idol): http://youtu.be/KoVUydPLzXM
I also learned about play and why it is important as well as the different levels of play. Since Aden and Alex are at different levels, I need to tailor my play routines to fit their individual needs. Instead of being the toy-taker I get my own toy and join in. If Aden is flying an airplane, I grab another airplane and fly with him, and then I do something different with the airplane, like make a loop or land. I can’t believe how effective this is. At first, they both wanted to take my toy. But I wouldn’t give up. Overtime they have allowed me to join in and indirectly teach them new ways to play.
One evening, I shared this strategy with Jon. Since he spends some evenings with the boys; he needs to be informed. After I explained, I sat back and watched. Within seconds, I saw him take Aden’s toy and try to demonstrate. No! No! NO! You took his toy! Of course he looked at me like I was crazy. After some practice, he seemed to get the idea but it was obvious these simple strategies aren’t as simple to the uninformed.
I also learned how to play with Aden and Alex with and without toys. Like most parents, I would look at the age requirement of a toy before making a purchase. I made the mistake of getting rid of certain toys because Aden and Alex had “outgrown” them. When in reality, they needed additional practice with basic toys such as blocks and sorting cups. I also created a list of specific words for different toys and toy routines. I made a list of 10 words for certain toys/routines and kept it nearby. I joked about this to other parents but in fact, I needed a reminder. Aden and Alex love their Toy Story figurines. The list of target words include: Buzz, Woody, Run, Jump, Fly, Over, Under, Fast, Slow, and Rescue. As they learn the words, I will replace the words with new ones.
Recently Mary Beth Marsden’s website “Real Look Autism” went public…here is a segment on play, coincidentally Jenny, my trainer, is in the video: http://www.youtube.com/watch?v=V-c50HNnPg0
Aden and Alex’s pretend play started to expand. One day, Alex jumped on the couch and yelled “all abroad” like a train conductor. Then he used the cushions to make wheels. What I didn’t know was this is called “substitution” (using one object to stand in place of another). This requires some imagination. I didn’t think Aden was using substitution but the myth was debunked a few days later when one of his teachers told me he had used a block to pour juice! Wow- see why paying attention is important?
Here is a video of Aden and Alex playing and Alex using substitution. Not only does this video emphasize substitution but it also showcases Aden’s functional play skills. In the video, he is preparing lunch for his monkeys. He also pretend pours juice into a cup and hands it to me and Alex. A year ago, this wasn’t happening. http://youtu.be/GXkjb7h5FBQ (Don’t mind Alex and his “toga”)
As I mentioned earlier, I wasn’t keen on the idea of parent training because I had already received previous training, however the training occurred when the boys were not receptive. Recently, Aden and Alex have become more aware of their surroundings, especially people. The strategies are working and I’m witnessing great progress!
On October 18, 2013, I met the other parents whose children were also participating in the study. (In the picture above: Jenny (parent trainer), Tapriel, Jason, myself, Trelina, and Laura) We instantly bonded and formed our own support group. We laughed, shed tears, and shared our worries, frustration, and fears. We celebrated birthdays and holidays. We encouraged each other. Laura always said “it’s going to be okay”. That phrase lifted my spirits on more than one occasion. With the right people by your side, it is going to be okay. Overall, it was an amazing experience, an experience I wouldn’t trade for anything. We plan to stay in touch and have even made promises to attend our children’s graduation parties! Now that is more than a simple joy.
- I received permission from the trainer and parents to include photo.