Part 1: You know your child better than anyone else…

Not enough education can be a dangerous thing

It doesn’t matter what anyone else is doing with their kids or what anyone else is telling you what to do with your child; at the end of the day, it is you that knows your child the best.  As a parent, we often get lost in what’s ‘supposed to be’ and it is usually something that we have gained from listening to what everyone else is saying.  I think that my worst three sources of critical feedback while on this journey have come from educators, doctors, family, and the well meaning outsider with a handful of information that likely you have already seen.  This isn’t my first trip at the rodeo.  I have been an autism parent for a long time; officially as of the diagnosis of my first son, thirteen years.  I feel like I have sifted through every website, read every news article, watched every special I could find, and just plain ol’ observed my kids all in an effort to help me help them.  Most suggestions and interference I take with a grain of salt as I realize that the intentions are meant to be helpful and I appreciate that; however, there are many that have come at a huge cost to our family emotionally.  Autistic children are sometimes difficult to work with, but I have found that the outside world is much more daunting and by far more difficult.  I think that of the many people I know, our particular journey in Public Education is something that most haven’t had to endure.  At least I hope not.

As I sit back and reflect over the last thirteen years of dealing with the schools in the area we live in; it has never been easy.  Educators started coming into our home soon after Seamus was diagnosed; although I am a huge supporter of education and teachers (having a background in Special Education, myself), I began to realize that what I had to say about my son was immediately discounted.  At the time, autism was really just starting to come into its own as more diagnoses were arising…with that came several teachers and therapists that were suddenly thrust into various short seminars and thirty minute courses teaching them the basics.  After which they came barreling in with grand ideas of helping my son without giving any thought as to what kind of child he was; they only saw him as autistic.  Essentially, they came armed with just enough knowledge to be dangerous.  They meant well, but often did more damage than good as they blundered in and began working with Seamus without really considering whether his personality fit the model they were using.  It didn’t.  They were trying to work with a docile child as if he was an aggressive child and in turn they caused him to regress.  It was painful for me to watch and it didn’t matter what I said, they felt that they knew best.  Most of the education they were receiving at the time was regarding those autistic children who have issues with aggression; there hadn’t been enough awareness of ASD at this time to realize just how broad the spectrum was and that like everyone else all children are different regardless of their diagnosis.

On one such occasion, one of the women that came to see us had just got done telling me how she was going to help Seamus by trying some new Occupational Therapy techniques on him.  I watched and was completely shocked at how aggressive that she was being with him.  Instead of patiently and quietly showing him how to bounce on the ball the way that she wanted him to, she was forcing him to sit on it and not gently.  I immediately intervened as the mother, “I know my son and you won’t get anywhere being that way with him.  He does better if you show him first what you want and then repeat it a few times until he understands.”

“Oh, you are just being an overprotective mother that needs to sit back and let the people who know better do their jobs,” she gave me a dirty look and I sat back.  We had company at the house that day and even my friend that watched with me showed a great look of disturbance on her face.  The woman went on, “Autistic children need to be forced; they won’t do it on their own.  You are too gentle and that is why he is behind.”

I was incensed by her response to me and just as I was going to tell her to get out, she forcibly bounced him so hard on the ball that his face went smashing into the floor causing his nose to bleed…would you believe it?  The woman didn’t even stop.  She picked him up and told him to stop crying and that it was okay and tried again.  Of course, Seamus was screaming and crying in pain as blood started dripping from his now bruised nose and I stood up, walked over and removed her hands from my child, “We are done for the day.  He isn’t going to want to continue now; autistic or not autistic a child with a bloody nose isn’t going to want to do any more.” (Just to give you an understanding of the situation, Seamus wasn’t quite three years old).

“You know it is parents like you who make your child worse off than they already are.  I know you love him, but this was part of a class I just took.  All autistic kids respond better to this approach and it is the only way that works,” she stormed out huffily and she actually wrote some very unpleasant things about me that later came back to cause more problems later.  I found out almost a year later from the Early Intervention Preschool he was attending, by that time they had gotten to know me and realized that I only cared about my son and that I was extremely proactive in his education.  But apparently, she had me labeled a resistant parent that was incapable of seeing her child for who he was.  I laugh at it now, but it stung a lot to know that someone’s pride was more important than listening to what I had to say.

I hold no malice towards that woman, but I do encourage people to realize that a single four hour course isn’t going to teach you all that much autism and that autism isn’t the child just a diagnosis.  Seamus is a rare child in that he is about the most gentle, sweet, loving, sensitive person that I have every met and with that comes a long memory.  The woman came back after that a number of other times to try to work with him and he was completely non-responsive.  She was more irritated that the things she had learned weren’t working and that he seemed to less capable than he was before.  He had regressed somewhat; his trust for her diminished and so he wasn’t interested in what she had to offer him.  Autism is a socially based disorder and most children and people with autism are greatly afraid of the people in the world because of our ability to change suddenly in our emotions or actions without any sort of warning.  The woman went from treating him sweetly the two times before to suddenly asserting an aggressive stance with him the next time she saw him.  His immediate defense mechanism was to shut down and withdraw from her completely.

 

Seamus would never quite open up to her again and from that point on it would seem that I was fighting an uphill battle carrying the weight of the entire world's ignornance on my shoulders.  I am sure it wasn't really all that bad, but it continued to add up over the following years as you will see.

(This is the end of part 1:  You know your child better than anyone else)