Autism Questionnaire

by PammyMcB

When your child was first diagnosed with autism what went through your mind?

Damien was first diagnosed when he was 16 months old. I was in total denial because the only thing I could think of was the movie Rainman and my uncle, David. At the time, I was not educated enough on the true nature of autism to realize this was something we could learn to live with.

What has your experience with the school system been like throughout the years?

When dealing with the school systems, we have had both good times and bad. Damien has often been fortunate enough to have wonderful teachers. However, there have been a couple of times that we have had to deal with teachers who did not understand what autism was. For instance, Damien’s second grade teacher told me on the last day of school, “Your son is the reason I decided to retire early.” My heart broke in a thousand pieces, not because of what she told me, but because of the fact that Damien and all of his classmates had heard what she had said. Damien didn’t want to start school the next year.

What advice do you have for future teachers with dealing with students with autism and work with families?

Two things in particular come to mind. First, language is key to dealing with families. This isn’t important for just a child with autism, but it is important for all children. As a prospective teacher, you should always be careful how you word things. For instance, as a parent of a child with autism, my defenses are always up. My son struggles with everything he does every single day. If a teacher approaches me and says, “We have a problem.” That reads as, “Your son is the problem.” However, a teacher that tells me that Damien is struggling, makes me feel that she is genuinely concerned about my child.

How did your family/society look at your child when they find out about their autism?

I have had people ask me if Damien is retarded or ignorant. I have had people call him names. I have also heard people call him hateful things. This is not limited to friends or acquaintances. I have even overheard family members speak poorly of my child. A family member even asked me if I minded keeping Damien away from him because he did not “know how to act” around Damien. All I could think of are things that I could not bring myself to say due to my love for the person. I did end up telling him that all Damien and I both want is for him to treat Damien exactly as he does the other children in the family. I told him that Damien notices when he is treated differently.

How has the school system aided your child throughout the years? How have they helped you?

The school district has been key in helping Damien reaching his goals. We have struggled in finding the modifications and accommodations to help Damien succeed. However, they have helped Damien to be his own advocate. Damien is able, now, to let us know what he needs to succeed as a student. His voice is heard, and his needs are addressed in his IEP (Individual Education Plan). Damien has access to the special education department as needed. He has personal tutors available as needed. Damien is allowed to exit the classroom when stressed and is offered a place to de-stress. Damien receives counseling services through the school as needed.

Where do you find main support comes dealing with a child with autism?

I have had to find services on my own, as there were no referral services for autism at the time. Damien has received therapies from many places, but there is not a support group in the area that is not church affiliated. Not being members of the church, we do not feel comfortable at the support groups. Damien and I hope that some day, we will be able to start a support group in the area where all people feel welcomed. I have found two friends with children with autism through Damien’s therapy center. They are the only support group that I have had other than my grandmother, who has raised a child with autism.

What is the best advice that has been given to you as a parent?

“God only gives you what you can handle.” – Grandma

What did you tell the siblings of your other children regarding your child with autism? How do you deal with that?

I have had to explain to Dylan what autism is, and how to deal with it. When they were young, I helped Dylan understand that some things that are easy for him are difficult for Damien. Dylan learned that he had to take over, sometimes, and look out for his older brother. Their relationship has never been a typical sibling relationship. One thing that really helped was getting a book for Dylan, Everybody Is Different: A Book for Young People Who Have Brothers or Sisters With Autism.

What is the biggest struggle your student has faced in school? What is the biggest struggle you have faced as a parent?

Bullying has to be the biggest struggle that both my children and me have faced over the years. We all have been bullied due to Damien’s autism. He has been bullied for being different, Dylan has been bullied due to Damien’s uniqueness, and I have been bullied as his mother. I have been criticized for my parenting and blamed for his autism.

How have you helped develop your child socially?

I did not put Damien in the private school as the school district had suggested. I agree with the doctor in saying that Damien will need to learn how to cope socially eventually, and it was better to start this at a young age, so it will not be quite a shock to Damien’s psyche. It has been a long tough road, but Damien has excelled beyond what many professionals have expected.

How do the other students in the school help your child?

I am not sure how they help him these days. In elementary school, Damien worked alongside a peer tutor that helped Damien stay on task. In middle school, he had a peer assistant to make sure he had his homework written down and helped to ensure Damien made it to the right classroom at the right time. Around the middle of seventh grade, Damien became capable of doing these things for himself. Now, he does not really require the peer tutor.

What is your advice to other parents?

Don’t look at autism as the worst thing that can happen to your child. If you work with them and push them to succeed, they will excel. With early intervention, Damien has exceeded our expectations and the expectations of many of the professionals who have worked with him. Remember that God made your child the way he/she is for a reason. Celebrate that and that all children are blessings. Don’t ever allow a professional to determine the outcome of your child or to put limits on your child’s future. I was lucky, I watched my grandmother raise my uncle as a widowed mother. She had not had the resources that we have today, nor did David receive the services our children are offered in special education. David turned out fine and has had the opportunity to live on his own. I knew if they could make it, so can we, so can you.

What are some resources you have found helpful?

The internet has been a valuable resource to us. We have been able to research autism and connect with people affected with autism through the world wide web. Through the web, I have found a support group through social websites.

What is the biggest struggle you have faced in the school system?

The biggest struggle was when Damien was in the sixth grade. His teacher often punished him for having seizures in his class. Although we have been able to work through that, the instance happens to be the biggest struggle I can think of aside from the bullying. With the bullying, I have had three different principals at three different schools tell me if they did something about the bullying, it would only get worse. Therefore, they were basically telling me that Damien needed to learn to take it. That is unacceptable. The school district has a no toleration policy now, and every instance of bullying is addressed swiftly.

What progress have you seen in your child throughout the years?

Oh, I could go on forever with this one. Damien has a few friends, and they are good friends that accepts him for who he is. He is not afraid to try new things even if he knows they will be difficult. Damien was in debate last year, and he is in theatre arts this year. He was even able to be my escort at my college graduation. Damien no longer cares what people thinks of him, and he is true to himself. He is able to share his compassion as well as unique perspective on autism. What Damien lacks emotionally in his spoken words, he more than makes up for in his actions and writing. He does still complain that “human language and emotions” confuse him, but, now, he is able to express that.

Tell some fun story about your child!

There are hundreds upon hundreds of them. One of my favorites is when he talked about the bird, Stewie, at work. Damien came home from work one evening. He said, “Momma, Stewie must like me or something.” I asked him how he knows that Stewie likes him, and he replied, “He jumps on my shoulder every day I’m in his cage and serenades me while I weed and feed and water him. I kind of like it, and I don’t even mind it when Stewie poops on my shoulder.”

Feel free to answer the questions in a reply to the post. I would love to know how you have coped with your child’s autism over the years.