The daily struggle of autism

Posted May 07, 2010, at 6:35 p.m.

The recent news of a family from Gray had an enormously devastating impact on my day and my entire outlook on life in general. The story was of a 44-year-old father who shot his 22-year-old son with autism in the back of the head then turned the gun to take his own life.

This was the culmination, I’m sure, of years of hard work, stress, tragedy and tears, and the knowledge that only the people that are directly affected by autism truly understand.

He must have felt that there was no way out. There would be no change in his situation and no change in those around him who have the power to change things.

Imagine years of endless battles — for both father and son — in classrooms, in boardrooms, in doctors’ offices, with no hope in sight. That’s how it is for those who are caring for those with autism, as harsh as it may sound to those who have not fully experienced the lifelong struggles beginning with the birth of an individual with autism, or to someone who does not have a daily encounter with someone with autism.

To those who live with it, for those who care for individuals on the autism spectrum, it’s a daily struggle.

Can you imagine being beaten day after day? Having your eyes scratched at, your hair pulled out, the walls of your house being kicked through, windows broken, plumbing systems dismantled — all by your own child whom you love and adore. No one in the household is immune, including your animals.

Can you imagine never sleeping for fear of what may be done while you are sleeping by a child who is totally out of control, with no help in sight from anywhere? If it were a husband who beat a wife, or a wife who beat a husband, any adult who beat a child, any child who beat another child, actions would be taken to ensure the safety of the abused party, even if it happened only one time.

When you’re a parent of a child with autism, it’s another fact of daily life. The worst part about it is that we love the individual causing the destruction. We devote all our being to helping this individual survive in this world.

Autism is a world all its own. Children with autism need to be supported in a way that takes a group effort. One person cannot safely do it alone. Two people cannot do it safely alone. Parents struggle to try to raise a family with the impossible task of trying to obtain and keep employment due to the number of meetings, doctors’ appointments, team meetings, school meetings, speech therapists, occupational therapists, physical therapists, psychologists, psychiatrists, teachers, principals. This is an endless task in itself to care for someone with autism.

I personally have two to care for.

Someone also told me once that these are God’s children. I don’t know if I even believe in God anymore, but I do know that it takes a team of dedicated people, it takes a village, it takes a community to care for children with autism. I want our community to wake up to the fact that people need help and people need care and people need support.

The only way that we can do that is by becoming a close-knit community. The community needs to see that the children and adults in our community and the people who care for them are getting exactly what they need to live full, functional and productive lives. This is necessary so that like the father in Gray we won’t feel that we have to take our own child’s life and then our own to find peace.

My children and my family are now being supported by the kindest, most supportive organization I have ever encountered right here in Ellsworth. I feel that they rescued us just when I thought all hope was lost.

I may not have given over my children to God, but I did have to let go and make the hardest decision of my life — to place them out of home and into a residential facility. There, a team of the most dedicated, caring people I have ever met are truly making positive changes in my children’s behaviors and lives.

I feel that they rescued, and now support, my family in the nick of time.

Thank you, Kids Peace New England. My family can never thank Kids Peace New England enough for all that they do — everyday.

Alice J. French of Ellsworth is the mother of twins with autism and chairperson of Justice for Autism With Community and Kindness, www.jacksfriends.org.

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