Tuesday, April 26, 2011

Social Stories

Recently, I wrote a very long post on Snugglebug's anxiety. We have started two things that I hope to impact his anxiety. Only time will tell if they work.

The first thing we started was the use of social stories. Social stories are short, descriptive stories with pictures to help the child visualize an event and explain what is going to happen. For Easter, I made a social story using scrapbook graphics. I love digital scrapbooking so I used the same concept for the social story.

We then read the story about hunting Easter eggs, what to do with the eggs, and what to do when we saw our friends. Snugglebug loved it and even asked me to read it after the egg hunt.

Once at the egg hunt, he was excited. There was no visit from the evil anxiety until the kids began to crowd into the starting area before the egg hunt. I could feel the tension increasing as the kids crowded around him and began invading his personal space (personal space is a whole other post). I whispered the words from the story in his ear, "We are happy to see our friends." He began to relax and seconds later the whistle signaling the craziness sounded. Snugglebug took his time gathering eggs and enjoyed every minute of the ten minute egg hunt. He walked away with a dozen and a half eggs. I walked away with a smile on my face. I don't know if we can attribute the social story to helping him to deal with his anxiety but it was enough that I am now making social stories for other upcoming events.

(For those interested in social stories, there are several websites that were very helpful. I'll post them at the end of this article.)

The second addition to our anxiety fighting battle is a visual scheduling system for each day and week. Using Picture Exhange Cards with velcro on the back, we attach the cards to a laminated piece of cardstock. We list the events of the next day with the PECS, and walk through those events the night before and again the next morning. We have just started this system so I hope it works as well as I have imagined.

We also have a laminated weekly calendar with the days of the week. We check off each day of the week and if there is a special event we mark it on the calendar so he can see it coming. He seems to like it.

I'll let you know if all this works to help curb his anxiety. I have no doubts that anxiety will still stage an unwarranted attack, but hopefully those attacks will be less in number.

Wednesday, April 13, 2011

Anxiety Attacks

Anxiety is a horrible and invisible enemy. It sneaks up on the victim when they least expect it. It's even worse when the victim is a child who can't comprehend or explain their feelings.

Along with 7q11.23 duplication comes a horrible level of anxiety. For some children, the anxiety is so high that it interferes with their social life and behavior, thus leading to past misdiagnosis of autism.

Snugglebug has this anxiety. On the scale of anxiety connected to 7q11.23 duplication, it is on the lesser end. But, on the scale of a nuero-typical three-year old, it is on the high end.

I cannot predict when the anxiety attacks will occur. I don't even know what to do when they do occur except reassure him that we will get through the situation together.

We had two incidents recently that seem to be similar in circumstance.

First, I took my train enthusiast to see Thomas the Train and ride a life-size train. Upon seeing the train, he squealed in delight and took off running toward the train. He was excited beyond belief. We arrived earlier than our boarding pass time so we had time to kill in the bounce house, etc. But, he wasn't interested! He only wanted to ride the train.

Finally, boarding time arrived, and we stood in line to board the train. But, as we approached the train's entrance, panic set in. I could feel him becoming tense but when the panic set in full force, he took off. He left my side and ran down the gang plank, away from me and the train. Fortunately, we were surrounded by understanding parents who cleared a path for me as I chased after him. I caught him pretty quick and hoisted his thrashing body up and back to our spot in line. The anxiety was just too much for him. When fight or flight overtook him, he chose flight.

Once on the train, he calmed down as I talked him through what was about to happen. He was still tense but seemed a little more composed. He made it through the train ride with flying colors. No more attempts at escape. He even climbed off the train by himself. I have no idea if he enjoyed the train ride. The downside of a non-verbal child is not knowing what they are feeling--Good or Bad.

The second incident was similar to the train. His little pre-school class took their first field trip. The eight students and two teachers were to ride the bus to the local library where they would read stories and sing songs. While we talked about it all weekend, the whole thing was new to Snugglebug and anxiety set in again.

The bus rolled up and the other students boarded gleefully, but Snugglebug had a complete meltdown. He was thrashing and crying. I carried him onto the bus and tried to talk to him, but he wasn't hearing me. I sat with him for a little while till he calmed down and was at least breathing again. I explained over and over again what needed to happen and that they were going to have a lot of fun. I finally slid him into the seat but he began crying once again. As I buckled his seat belt, he cried harder and louder. I fought back the tears that were forming and continued to reassure him.

His anxiety had not subsided when I left the bus and the teacher took my place next to him. I smiled and waved as the bus pulled out of the parking lot, but once it was out of site. I fell apart. Big, nasty, crocodile tears poured down my cheeks as I stood there all alone in the parking lot.

I prayed to God to look after my little boy and comfort him because I couldn't. Climbing into my car, I wiped the tears and cried some more. Moments later, I received a text from his teacher with a not-crying photo of Snugglebug. Before they were around the block, he had stopped crying and was enjoying the view from the bus window. I couldn't tell from the photo if he was happy or not, but at least I knew the anxiety had subsided enough that the tears had stopped.

I was extremely grateful to his teacher for letting me know that he was okay. Thoughtful teachers are a great gift to parents as well as students.

Upon returning from the library, Snugglebug had no issues boarding the bus and was excited to see it pull into the parking lot (all relayed to my by his teacher). Since then, he has asked about riding the bus almost everyday. We may actually consider the bus for summer school. It looks like this fear may be well conquered.

A Lesson in Humility

I learned a lesson in humility the hard way. A friend of mine even pointed it out so that I sure not to miss the lesson.

Recently, I posted about my son's good health despite all his internal health issues that are completely unrelated to his immune system. I bragged that while I caught everything, he didn't. No sooner than that was posted than my lesson began.

Snugglebug had been in school for an entire week. At the end of the week, we celebrated with a trip to the park. That evening I noticed a cough but attributed it to allergies. The next morning we were headed to the pediatrician, and he was diagnosed with croup. Just as croup should it lasted three or four days with a couple of bad nights of sleep and a really nasty sounding cough. Since, his school week is Tuesday through Thursday. I wasn't even expecting him to miss school. But, on Monday night his fever spiked the highest it had been all weekend and his cough was back and worse than ever.

I learned the next morning that we should have made a trip to the ER. Our pediatrician was kind and non-judgmental about it. She simply said, "Let's talk about what to do next time." And having a seat walked me through the symptoms, the steps in making a decision to go to the ER, and where to take him should I decide it was necessary. It was all a learning experience and I was grateful for an understanding doctor who was willing to educate me.

Unfortunately for Snugglebug, his croup had turned into pneumonia. He was given some fairly stout antibiotics and sent home with a note that he would be out of school all week. All week he was ill with his fever going up and down. I was worried sick!

Ten days later, my sweet little boy was finally feeling like himself again, and I learned a lesson in humility.