Monday, September 21, 2009

Autism's Parts, Mothers Meet

As I hostess for a local restaurant, a family walks in with a set of triplets. I look at the mother ("Mom-A"). She looks back at me. We immediately recognize each other. We haven't met through business or mutual friends, we know each other through our sons. They both are on the spectrum for autism and went to the same preschool for early intervention.

At the first realization of our common thread, we weren't quite sure how (or if we even wanted) to acknowledge the reason. Too late to hide, we both broke the awkwardness with more silence than conversation. We didn't need words because our eyes spoke volumes. Our connection was something most other mothers will never feel. I could see the feeling of struggle, of worry, and emotional solitude pass through this mothers gaze.

While seating her family, we quickly caught up on each of our son's progress. As I passed out each menu, I bent down to say hello to this special child. With a bit of prompting, the little boy greeted me back. What a glorious sound to hear. Understanding the hard work behind the task I just witnessed, it brought me back to the time when my own son struggled with each vowel and consonant uttered. Though still in need of hiking up the hill farther, it was certain (to me) that he would reach the top. In some respects, he already has and is simply trudging up another hill.

After my shift was over, I exchanged information with "Mom-A". A week passes and I have another ironic encounter with "Mom-A". This time, I have my son with me and she is able to see his progress. Instantly, I see the joy she had the previous week, drain from her and become a feeling of solitude. My son is not as severely afflicted as "Mom-A's" son. My heart ached for her. I knew that feeling when I would be at a birthday party or school function with my son's class (most typical peers). It was the feeling of wishing my son could play or run or hop or act as the other kids and then hating myself for having such a selfish thought. This mother was comparing what my son could do to what her son couldn't. I knew it and I knew what she longed for, and I knew how feeling it would torture her as if she wasn't loving him enough for who he was. It is irrational to be so hard on ourselves but that feeling is easier than allowing ourselves off the "hook" during such times of inadequacies.

My next encounter happened while I was waiting for my daughter to finish a gymnastics class at the local YMCA. I was making casual conversation with an employee and talking about my son and the difficulties in advocating. Feeling compelled to join in, a mother ("Mom-B") sitting across from me apologized for the interruption but acknowledged her struggle with the school system as well. Her 7 year old son is on the spectrum for autism and pulled him from the system in order to be certain he would get the services he was desperately in need of. She praised my efforts and we look forward to our "mini" support time in the coming weeks.

After thinking about this conversation, I smiled at how driven "Mom-B" was to add to what I was talking about. It was exactly what I would have done. There are so many times where we can't join a topic of conversation because we haven't experienced the same things that other parents have. In this case, when "Mom-B" finally hears the connection of her experience with mine, she had to take the leap. I understand that need for validation and camaraderie.

The two encounters I had with mothers of autistic children are very different. I'm not sure why having such encounters left me with a good feeling but I venture to guess it has something to do with the feeling of togetherness and that the whole is only as good as the sum of its parts. A quote that can be deciphered a number of ways, but this is the way I think of it:

Autism (and all that,that means) can be dealt with if we lean on others who may be in the same circumstance. There is power in numbers and a sense control takes over when we (the parents) may feel like our control has been stripped away... Proof that control is still in our reach. We may just need each other to grasp it back.

Monday, September 14, 2009

VMA's, Taylor Swift, and Stripped Moments-Autism

Shocked, Humiliated, and Short-changed...
This is what Taylor Swift may have felt during last nights award ceremony at the 2009 Video Music Awards. I know I felt it along with her.
In continuing my efforts to learn about the interests of the current teen population, I was happy when the young female performer won. After Taylor Swift began to speak of dreaming of that very moment, her "moment" was so rudely interrupted by a person with a different view. I first became appalled , then saddened by the event.
What gives another person the right to judge someone? What gives another person the right to think they are above all others? What gives another person the right to publicly humiliate someone? What gives another person the right ?!!
I sat for the rest of the show upset and uneasy. I thought I should really get a grip on reality. After all, I don't know these people and I was in no way directly affected by the rejection. Then, Beyonce won and, very appropriately and eloquently, gave the floor back to Taylor Swift. It was a great gesture. Unfortunately, I think the moment had already been stripped away.
My mind was so unsettled. I realized that it is because I truly understood what Taylor Swift felt in that "moment". With even more intensity and realization, some of my son's (who is on the Autism Spectrum) moments are stripped away. The reasons may vary and can be just symptomatic of being autistic, yet others(in the future) will occur because of the lack of educational enlightenment. Regardless, it is not fair! I understand that we cannot change what we cannot control, but we can change and impact what we can control (education).
For most parents, there is an assumption early on (before birth) of what your children will accomplish. You assume your child will have a voice and you will hear them call you mommy or daddy. You assume your child will play by himself and with others. You assume that your child will complete tasks independently so you can cheer for them and be the "proud parent". These are moments for parents to enjoy. They are affirmations and "fruits of labor", rewarding parents for their dedication. Did you ever consider or can you even comprehend, that despite all your efforts, these moments could be stripped from your enjoyment pleasure? For parents with children on the autism spectrum, we are stripped of the "typical" developmental moments. Similar to Taylor Swift, we may not get that moment to shine and hear our child call out mommy. Our child is struggling to communicate. What may seem easy to most of us is actually a complicated series of processes and oral motor movements. Those of us lucky enough to experience that first speaking moment or the moment we are called mommy, are usually in a moment all by ourselves because it happened later for our child. Our friends have past that excitement. Though I will admit that my appreciation for such moments may be heightened, it still leaves us in a kind of group that has been "left behind".
This leads me to my autistic son's stripped moments. He is really why I was so upset after seeing VMA winner, Taylor Swift, publicly put down. She worked hard and didn't deserve that kind of treatment. It was like watching my own child up on the stage. Can you just imagine how her parents must have reacted? The theory is that if you work hard, you will be rewarded, accepted, and make people proud. The theory doesn't state that there might be a couple of bad "eggs" that will try to take your thunder away. Most of us do overcome these little nuances, but it doesn't make it right.
I wonder if there will be a Kanye West getting in the way of my son's, self-satisfying, moments? I already despise this imaginary person and worry because I'm not sure how many little nuances we can actually get past without it effecting my son's self-esteem and social placement in society, something that is so difficult for him to work through as it is. I am hoping that my son does not realize that some typical moments his peers enjoy, he has yet to experience. His ignorance, I am certain, is limited in time. Soon (if he hasn't already), he will notice in phys. ed. that his peers are able to play the games better. Soon, he will notice the frustrations of others or the strange looks as he talks incessantly about one particular area of interest. He only does this to engage that person. It is his way of socializing. Without peer education, the Kanye West's will capitalize on such a weaknesses. His moments of accomplishments may be stripped.
I can only hope that there will be a person who will allow my son to enjoy his moments of success, as Beyonce did last night. This will not happen without his peers understanding and reaching out to him. Beyonce understood what it felt like to receive a VMA for the first time. She wanted to give that "moment" to Taylor Swift. The typical teen may not even realize their own "moments". Will they know to support an autistic peer experience a moment? If fact, because most moments will have passed for the typical peer, the Kanye West's in the world may feel the need to publicly humiliate our children for their delay. We need a teen educational ambassador. Taylor Swift, now that you can empathize, we need you to take a stand and help us with our mission so that our children don't get their moments stolen from them too! Send me a tweet: .

Wednesday, September 2, 2009

A Parents Prayer-First Day of School

Dear Lord,
Today I lend my precious child out for the benefits of education, experience, and socialization. His anxiety is heightened along with mine. I ask you to watch over him and give him the confidence to embrace his new friends. I ask for your constant encouragement so he continues to exert his best efforts, especially during his most challenging moments. He has autism and those moments are so important to his progress. He needs that extra push and strength to endure, rise to the challenge, and overcome.

Please engulf him with our love so he will feel an ever present sense of security in knowing we are with him even when he can not see, hear, or touch us. Please grant him the self-esteem necessary to look past his own weaknesses (disabilities) and frustrations and realize what superb strength and worth he has.

Lastly, please give him special assistance during those endeavors he struggles with the most(you can input your child's own goals):
  • Peer socialization
  • Fine motor activities (writing, creative arts)
  • Integration with sensory processing to help limit distractions
  • Courage to lead and be his own person
Above all else, keep him protected in your arms. In your name, I pray - Amen.