- Family and Parenting
More Pain for a Family
Over the past ten years my family has traveled to the same vacation spot. It is a private community on a lake, open only to those who own homes in the area or are guests of the residents. We often sit back and observe the comings and goings of the center members. Singles have become couples and couples have grown to families under our watchful eyes. We first arrived at this "beach" as we call it because sand has been added in front of the lake opening to make the experience more pleasant and welcoming, with our two small sons. Our oldest had been diagnosed with Asperger Syndrome and we were careful of the company we kept. We never felt as those anyone was staring or judging in this quiet little spot of respite. We grew to a family of five when our daughter was born and began to make friends as people stopped by our picnic spot to see the baby and offer congratulations. We have stayed summer friends with these people ever since. One couple in particular arrived on the scene with their little girl who was close in age to ours, opening the door to brief but friendly conversations. This family, like ours soon grew to welcome a little boy and then last year another baby. We chatted about fishing and our kids swimming, our jobs and other light subjects never truly getting past the pleasantries, but this was fine with us. Summer was a time for peace and rest.
This year, we noticed something different about this young family. It had been present last year, but they had skillfully hid it from all who approached them. Their middle child made no eye contact. He had very little verbal ability and often ran back and forth with no particular destination at the end of his journey. As a parent of someone on the spectrum, I sat back and watched in sadness. I overheard the mother chatting with another young mother and then I heard the word. Autism. She was discussing his preschool in an upbeat bubbly voice which I recogized as the voice of opptimism that we special needs moms try so desperately to keep. It is an uphill battle, but somehow we keep finding the strength to forge ahead. She was following her young son around while balancing her baby on her hip.
I did not approach her except to call pleasantries and continued to chat with the mom of an older child who had grown up with my middle child.
This time at the lake it was completely clear to us. We watched this family struggle with the reality of a disabled child and two other neurotypicals. The older child running to help her mom with the younger kids while trying desperately to play with the kids her age. The dad trying to get on with the business of fishing and boating while acutely aware that his son was not joining in as he would have liked. We observed the baby sweetly sitting in the crib smiling and chatting in baby talk to all of the residents who passed by him and calling his name. He seemed as though he had no choice but to behave because everyone was busy trying to cope. I felt sad. I so understood where they were. Our son is 15 and we have just truly learned to handle what God has given to us. You never stop hoping that things will change, but somehow we have finally gained the gift of acceptance.
When we arrived at the beach yesterday, we were greeted by the father of this family who was frantically talking to my husband. He spilled all of the beans. He told us that his son was autistic, but not because he knew we understood, but because their family had just endured a major trauma on top of the one they were enduring so bravely. Their autistic son had been abducted right from their yard that morning! Fortunately for them, he had also been found about an hour after they knew he was truly missing. This community which is watched by security guards and videotaped by surveillance cameras was no safer than anywhere else in our world. What made matters worse was that the security guards were not being honest, They were using the fact that this child was non verbal and truly could not tell the full story to his parents against him. The video tape shows a car and a familar teenager who is known for trouble and yet the guards are insisting that this autistic child wandered away and walked for a mile by himself without stopping. This dad KNEW we would get it. Anyone who has a child with any type of ASD will recognize it in other children. He knew we would say "no, your son does not walk a straight path. He stops, he retraces his steps, he stops to look at something, he turns back again." Our boys do not keep walking unless they know exactly where they are going. The security found this precious boy one mile away crying, scared standing still. If he wandered, he would have still been walking. When his mother questioned him, she showed him pictures. He pointed at the CAR and said in his way "car" as to the way he was taken. But his words are disregarded because he is autistic. They don't matter, he cannot tell the full story.
Finally we talked to this mom who was so drained from the experience but still tried valiantly to show her kids a good time. She accepted our help with the kids and was amazed by our 13 year olds ease and desire to follow her little autistic son around to be sure he did not get hurt or lost. He was not afraid or repulsed by her son's movements or actions. He accepted him for who he was and even liked him. He is a sweet little one, and my boy is a sweet big boy who's heart is open to this boy because of the way he has grown up.
The state police are now involved and thankfully are interested in getting to the bottom of this. But the sadness and the worry still remain for all of us. Not only for the worry that any of our children could be abducted, but those who remain speechless are disregarded and forgotten. The parents feel that the child was released because the kidnapper realized he wasn't like other kids. Rejected even by a criminal, which ironically is something to celebrate this time.
My heart has ached for this family since we talked. I KNOW. I feel it. I know how hard it is to juggle your attention, your affections. I heard the little girl when she said she didn't always like helping out. I have heard it from my middle child's own lips. I saw her trying to juggle between the two little ones. I heard her concern for the baby, that he too might be diagnosed with autism one day, and knowing that she would handle it if it but so not wanting to do it again.
When we will figure out what is happening to our children? I am amazed at the sheer number of my friends who are telling my about their children's diagnosis. I know that I am sensitive to this, but it is everywhere, not just where I am looking. When are we going to truly find out why and where it is coming from? No we continue to pollute the world and forget the consequences. When are we as a world going to be more accepting? I hear over and over how families of kids like ours stay away from so many events because they don't want to be where people don't understand. We did it, we hid for a long time. We don't anymore, but we are still very selective.
I told this mom that things are far better than they were 13 years ago when we were going through this and better than it was before our son. We just have to keep fighting, learning and hanging on to hope. We also have to continue to find solace in those who choose to educate themselves and accept our kids, they are the ones who will change the world.