Joy Felt in Sharing A Day With Neurotypical Peers

Marisa has a very active social life, but most of her activities are planned with her friends, all of which are either on the autism spectrum or have other developmental disabilities. But this past Sunday, Marisa had a special opportunity to spend some time with neurotypical peers. A very receptive professor at Keuka College who is using my book to help her special education students learn about life for families living with autism and other disabilities, apparently got some of her students interested enough to take this one step further.  For the past couple of years, the professor has been sending me letters written by her students to let me know what they have learned from my book. Her hope is that her students will gain more from expressing what they learned from me, the author, than simply writing a class paper on the subject of autism.

I have found this to be very rewarding because, these college students are able to gain insight from the years I have spent raising a child with autism. Whether they become special education teachers or not, is irrelevant. What is important is that these young adults are gaining an appreciation and a new perspective on what life is like living with a family member having a disability. They are learning by reading a first-person experience, rather than just getting the basics from a textbook approach.

When I first published my book, Isabelle Rapin, a well known neurologist, very knowledgeable about autism, wrote a wonderful review of Finding Marisa in The Journal for Autism and Developmental Disorders (2007) 37:2024-2025 issue.

She said, "I hope the professionals who take the time to read the book will recommend it widely to the parents of the children they care for because I believe it will be useful to parents and professionals alike."

I have helped Marisa, my daughter with autism, grow to be the best person she can be, while at the same time being happy with who she is. To me this is a most valuable accomplishment because, when one truly believes in oneself, there is a better chance that others will believe in them too. That being the case, I trust that with good supports in place, Marisa will be successful at whatever she chooses to do.

So when I received an e-mail from a student attending Keuka College, whose home is relatively close to ours, I was absolutely stunned! She and another student were requesting to come and meet Marisa. Marisa was so excited that she set out immediately planning the day. There would be an opportunity to share and play her Wii games, share the DVD copies of the shows she had main roles in (The Little Mermaid and Mary Poppins), prepare a dessert and perhaps play Uno and Scrabble, both favorites of hers. She also shared some picture albums and some of her favorite Facebook games. It was a magical day for Marisa! I have to say it had to have been the very first time she actually had two neurotypical girls over for a fun afternoon.

Was this a valuable experience for the students, Briana and Alex, both Sophomores at Keuka College, who spent a good 4 hours with Marisa?  I think it was. Although Marisa was able to take charge of numerous games, prepare and serve a dessert and share her picture albums, there is still one very important fact that clearly set her apart. Marisa's autism made it difficult for her to hold an extended conversation. The give and take and natural flow of ideas expressed openly to another, is one area that poses a great challenge to someone with autism, and though there are many things Marisa is able to do well, this is not one of them.

For Briana and Alex, who were happy to have the opportunity to share an afternoon with Marisa, there had to be an appreciation of what was truly present, and a growing awareness of what was clearly absent in her ability to openly converse. Just as there are challenges for someone who is blind or deaf, there are also immense challenges for those with autism. Clearly, the biggest challenge is the ability to process language and participate in the joys and ease of interactive conversation. One must appreciate that the ability to express one's thoughts and feelings, can lead to frustration and outbursts for those on the spectrum who are more severely impaired in language.

Was this a good experience for the students who took the time to visit? I believe it was, and not just for them. This was a hands-on experience at it's best ... for me, because I experienced the joy Marisa felt for having the opportunity to share her life with neurotypical peers; for Marisa ... for having the chance to do so; and for Briana and Alex ... who cared enough to take the time to reach out and connect with someone living with autism, a condition that still remains a puzzle to most of the neurotypical population. However, if more young people attempt to reach out and understand and accept those with autism, then there is hope for a better future, not just for the next generation of those on the spectrum, but for the rest of us who will be able to gain from the many talents this special group of people have to offer.

Learning to Deal With the Unexpected

The sun was shining brightly and it was the start of a new day. After she had gone through her usual morning routine of dressing and making her breakfast, Marisa was about to get ready to leave for school. Now she could be expected back in the kitchen to ask me to mute the TV news (she doesn't like listening to news in the morning), but something was clearly wrong by the tone in her voice.

"MOM! My shirt has a HOLE in it! Can you FIX it?" she cried out as if the world was going to come to an end any minute.

I knew this was going to be a big challenge for me. I quickly thought over my options. I didn't want to get her upset any more than necessary over what seemed like a major problem to her. Of course I would be annoyed if it was MY shirt ... one that was just bought under a month ago. If it had happened to me, I would simply return it with my receipt, but Marisa's shirt was actually a special one that she had purchased from a Miranda Cosgrove concert. That being the case, there was no way of returning it or exchanging it. I looked at the hole in the shirt ... smack in the middle of the chest and wondered how that could have happened. It made me angry to think it was a defect that had gone unnoticed.

"I can't fix it now but I will definitely fix it with a matching iron-on patch and even a rhinestone to cover the patch. After all, the hole happens to be just above the "D" in Miranda. It will add a nice sparkle to the shirt. Why don't you wear another shirt today?"

Marisa wasn't quite happy about that. She started to grit her teeth and get more upset. That's when I realized that she needed to hear the options.

"Okay, look! Here's the choices you have. You can wear the shirt with the hole today. It doesn't really show anyway, and I can fix it for the next time you wear it. Or, you could take it off and wear another shirt that doesn't have a hole. It's your choice. Either choice will be fine, but gritting your teeth and getting angry isn't going to solve the problem."

She stood there thinking it over and then said, "I'll change."

Off she went to find another shirt, and a few minutes later she appeared looking as together as usual.

"Hey, you're looking very pretty now," I said.

It's all about choices and making wise decisions. Marisa needed someone to help her navigate those choices, but once she made a decision she was back on track and ready to face the new day.

I sent a note to her teacher to let her know what had happened, just in case Marisa seemed upset about the change in her planned attire for the day. Later I was happy to receive a note back from the teacher that Marisa had not once referred to the hole in the shirt incident.

Now I know that Marisa has really matured! She was able to handle this disappointment and move on. There was a time when this would not have been the case. For example, she might have had a major tantrum that would have made her late catching her bus, or she might have gone to school and been upset all day, which would have been disruptive. She also might have refused to change into another shirt, which would have caused her to obsess over it all day.

The point is that although she was upset initially, she was able to think it through, make a wise decision and then move on with her day. I couldn't have handled that any better myself. Was I pleasantly surprised? Yes I was! Then I realized that with age comes wisdom, even for our special needs kids. This is something that all parents of children with autism or any disability should always remember. Maybe it comes at a slower rate, but we need to realize and have faith that wisdom does come with age, no matter how small an amount. And with the patience, nurturing and ever so gentle guidance we provide, every bit of wisdom our children gain, should be appreciated and acknowledged as a successful achievement in their quest to become fully functioning adults.

Bullying

Ben X is a 2007 film made in Belgium about a high school teen with high functioning autism who finds a unique way of dealing with the cruel bullying of his classmates. This film literally kept me glued to my seat, which frankly is unusual since I tend to fall asleep within the first 30 minutes of sitting down in front of most movies. 

The film brings to light the impact that bullying has on those who experience it. Watching repeated bullying incidents in the film is very painful, but what's amazing about this story is watching Ben find a way to enlighten those around him and not just find his way through a most difficult situation, but come to realize that it is okay to be the person he was born to be.

This film made me pause and think about our children in the mainstream setting. How difficult life must be for them not just having to deal with their school work but, because of their autism, the social struggle to fit in with their peers. Think of the anxiety that must be present for these students. For my own daughter this was not a concern, because she attended a school for special needs and was equal and happy among her peers.

But for mainstream educators the focus is on academics and encouraging their students to get the grades needed to go on to college. In so doing, very little is done to accommodate the social needs of those on the autism spectrum. Many schools offer counseling for students on the spectrum who need help navigating the social pressures around them, but what kind of counseling is required of neuro-typical kids when it comes to understanding those with autism?

In order to promote success among those on the spectrum, we need to educate the general population about what it means to have autism and how to be more understanding and accepting of this population. Those with autism must learn to get along in a neuro-typical world, but life would be better for everyone if the neuro-typical population were better informed and aware of the difficulties that people with autism are faced with on a daily basis. For example, police who are taught to recognize the difficulties of those living with autism are better prepared to handle a person with autism appropriately rather than having a misunderstood situation get out of hand and possibly end tragically.

So, should we be providing counseling to just those with autism, or should we be counseling all students as part of health education? Educating neuro-typical students about autism and it's difficulties could help ease the way for those that are in the mainstream today, and in so doing, help those that are out in the real world be treated fairly by the better educated population of tomorrow.