Autism Conference, What Did I learn?

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Henri Nouwen, while working at L’Arche Daybreak, said it best, so I am going personalize his sentiment! This is what I learned,

Going to The National Autism Conference was a painful experience for me in many ways. I had to face all my limitations and shortcomings directly, and with my husband and son. It was also a life giving experience seeing my handicaps so clearly and those surrounding me. This helped me make them not just stumbling blocks but gateways to solidarity with those who cannot hide their disabilities and who form the core of our community. 

Any time we take Dorian out of his routine, there is upset. We realized that this was the longest one on one time we had with him…ever. In the past when had a few days alone with him, eventually there would be a sibling to buffer our relationship. We had really excruciating  times with no where to run! We all had to reach deep- so that is good, that is growth, that is progress! This was coupled with intense sessions of Autism Information from sought-out speakers. There were a few parents who simply had to leave, their children couldn’t take it one more minute. We have been there, but we realized, we pushed through this week and we have all found things we really appreciated and are thankful for!

George and I also had some pretty heavy marital issues going on. Some times when you re visit a geographical location it can bring back memories…good and bad. We had to over come, reclaim as it were, this location.

The last day we were at the conference, we went to a session by Dr. Jonathan Ivy on Token Economies. Having tried Token Economies in our home for over 20 years with varying degrees of success, we were interested in having a whole session on this. He did a fantastic job explaining the key components of a successful Token system as well as why they fail. I could understand, during his explanation, why some of our Economies failed or simply never took flight! You have to have a clear definition of what you are working for and what your target behavior is- you may be trying to decrease undesirable behaviors or may be trying to increase one’s that aren’t as evident. He is a researcher and communicated his eagerness to collect more data and do more studies. You can find more about his research at this link.

Our hope is to implement a Token Economy for our son’s morning routine this school year. I was equally inspired how I might use these more to motivate everyone in the home, including myself!!

When the week was done, we all felt saddened at the thought of leaving the campus! Something really shifted in our dynamic through those days together, we all had to be mentally and physically strong and we were…together. I learned more about my self, as I often do- but I learned more about my husband and son too because I willing to really listen. I learned that at the end of the day, it isn’t your test score, diploma or degree that brings great success or a platform from which to speak, but it’s your resilience and grit that is going to make you stand out and move forward<3

(Read the earlier blogs on the conference; National Autism Conference-Getting There, Autism Conference- Day 1, Autism Conference- Days 2 and 3)

It Took Nine Years to Go to a Restaurant!

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Our youngest son is autistic. When my mother-in-law was alive, her love language to us was taking us out to eat at a restaurant, and I would be so torn.

On one hand, I had four children and helped care for her, so it seemed like a wonderful idea to not have to cook one meal out of the thousands I had prepared over many years of marriage and motherhood! But taking along extra “special” food for my “special” son who had a “special” diet, along with the struggle of trying to combat his behavior the entire time, wasn’t worth the stress I felt. These are one of the many struggles those who care for a special needs child face.

It is so easy to feel entitled. “I deserve a dinner out without our son knocking over his hundredth glass of water and exasperating everyone at the table, dammit! I deserve to relax with a night off!”

After all, I’m not a masochist. I mean, Jesus retreated often and prayed! I need my rest. Oh buddy do I need my rest! But I also chose to receive my children and raise them to the best of my ability, and it is my responsibility to take care of them. However, if I keep doing the same thing and expecting a different result, I will drive myself crazy!

So I decided I wouldn’t do that anymore with him. At some point you have to pull back and ask yourself what is best for everyone involved. I would hate myself for how stressed I was, how stressed I acted, and especially how I treated the rest of my family because of my stress. It was a lose-lose situation. I would leave the house loading my stress trigger, hoping this time he wouldn’t do a, b, and c. Then I would be totally rigid and on edge while we were out, then beat myself up for several days afterward because I felt like a failure… again.

It was not until our son started going to a vestibular therapy that was a bit of a drive from our home that I started rewarding him with a dinner out, if he did well at therapy and behaved while we were there. We have left many restaurants before, and I’ve gotten our food to go more than once. But this restaurant we chose had gluten-free items, which was a real treat! He started understanding that it was worth it to him to behave so he could have a special date with mom and eat his own gluten free favorites. He was nine years old, and I was like, wow! we can do this sometimes!

Since then, we have had some horrible experiences as a family. We have left restaurants as a family. But with every day that passes, these things are farther and farther behind us. Living with autism or behavioral issues is often like constantly looking in the rear-view mirror and seeing what road you have covered. It never feels like you have arrived at your destination; you just have to remember where you started and throw yourself a little party that you are not still “back there!”

As we left our family therapy session today, I was considering these things. We went out to eat, no glasses were spilled, no major behavior issues were exhibited, and we even enjoyed a few laughs together.

Happy dance!<3