I went to the National Alliance of Mentally Ill, and they had a lot of resources. But even that becomes depressing after a while because people keep coming and telling you their horror stories, and you want to hear the good things. And unfortunately, things don’t turn out well. We have been lucky because it has been ten years since his surgery, and I started to see improvement five years ago. But in the past two years, it has been amazing.
Lisa: That’s very inspiring. In Chapter 15, you said that things aren’t a perfect fit; you have to make do. What is the lesson there?
Robin: Right after his surgery, I tried to find a high school for him. He had gone to one school for two months, and that was a total disaster. They gave him a one-on-one who followed him everywhere, including the restroom, which they weren’t supposed to do. And he kept coming home every day asking me to fire this individual. I kept talking to the school, and they kept saying they were handling it.
But I didn’t like the way they were handling it, so I ended up hiring an attorney and getting permission from the school district. The law says that if a school district cannot provide your child with an adequate education, then they have to pay a private facility to do that. The school district provided me with a list of non-public schools to contact. I took him from one school to another, but no one wanted him because of all his problems and behavior issues. But we finally went to a school in our area, and they were devoted to autistic children. And it was great, in that he had a lot of similar behaviors to these kids. But he was academically far above them, so he loved it.
They did a lot of good. They were able to help him move his thoughts to the back of his head, and they have a lot of techniques to do that. So they had a lot of training there, and that was wonderful. It also gave my son the chance to interact with people who did not make fun of him. And to some degree, he felt he could help them, and that helped him to develop his empathy and make him a better person. Even then, he got paranoid about people coming to kidnap him from school, and he refused to go to school for a while. So we ended up removing him from there and sending him to a residential facility.
Lisa: So who would you like to help or inspire with this book?
Robin: I would like to reach out to parents of children with special needs or adults. It doesn’t matter if it is the result of an injury, or if it is something neurological. I think we all travel the same road. When Seth was little and we used to go to the doctors, I would say, “I think he may be autistic.” They would say, “You are being a helicopter parent.” (That’s being an overprotective parent.) And he was an only child, so I had nothing to compare him to. I started believing them, and I don’t think this is a solitary case. I think there are people who have gone through similar things.
Doctors need to learn to listen to their patients and in the case of pediatricians, to their patient’s parents, because parents know their children. They are with them 24/7. They know their behaviors, they see them interact with other children and they see that their children aren’t doing things that other children their age are doing. So I just want to share this story with them, and I also want to help them tell their stories.
On a website that I have created in conjunction with this, I have asked people to share their stories. And I am hoping that at some point (with their permission), I can take those stories and create a book for other parents. Then they can feel that they have a common group of people with whom they can speak. I want the website to become a forum for parents to be able to express their angst, to ask for advice, and to find out about resources. It is just in early development stages.
Lisa: That’s great. So what advice would you give to a parent as she/he goes through the process of learning about her/his child’s challenges?
Robin: I would tell her/him to get second and third opinions. To never be afraid to question a doctor. Do your research because you have to be your child’s advocate. No matter how well-trained doctors are, they are human beings. So if they are not looking for something, they are not going to find it. Do as much research as you can, talk to people, ask about things, and don’t be afraid. Your child cannot do it, so you have to do it for them.
Lisa: And what advice would you give to parents about dealing with school administrators? And what about special needs support from schools and outside agencies?
Robin: Again, be an advocate. Schools are given funding from the state, county, and federal governments for special needs programs. However, if they don’t use it for special needs programs, I am under the impression that they can use it for other things they might want. So sometimes, they do not want to give you what you ask for, or what the law requires them to give you because they want the money for something else.
