More About the Oprah Interview - a 9 year old's thoughts

My oldest son watched the show yesterday and after watching it he told me that he was glad he saw it but that he didn't really like it. I asked him why and he said, "because it didn't seem real." I probed a little further to find out why. I wish I could remember our dialogue better, but the gist of it was because they did not talk to any autistic people!

Isn't that interesting? While there have been a few direct conversations on television with autistic people (Amanda Baggs and "Sue" from "Autism is a World"), most media attention regarding autism is given to the emotional rantings of distraught parents and medical professionals.

I found the excerpt with Andrew, the "almost 12 year old" boy on Oprah yesterday interesting. My oldest son reminds me a lot of him. Like Andrew and David, his brother, my oldest is 16 months older than his autistic brother. He is an immense help to me, and as they have gotten older, he is wonderful about trying to engage Samuel in playing. He understands that Samuel is autistic and he will always be different. While much of our family life is affected by and perhaps consumed with autism, I feel no guilt for how we are living and for the help that I ask of from my son. There are plenty of moments that he gets individual attention from me because he is homeschooled while Samuel goes to public school. He also gets to travel with his Dad for his go-kart racing and other occasional trips they take to my husband's hometown, Rochester, New York. Unlike Andrew, my son does not have such a negative view of autism. I'm sure there are times that he wishes things were different, but he does a wonderful job of accepting our life as it is and accepting his brother as he is. I liked seeing the video of Andrew trying to play with his brother. I'm sorry that he feels lonely and has a hard time that David often won't respond. In our family we have the added benefit of Samuel having a younger brother. He doesn't yet understand what autism is, and he is relentless in his attempts of getting Samuel to play with him. I think that this is invaluable experience for Samuel. My oldest and youngest boys also have the benefit of playing with each other when Samuel decides he is going to ignore them.

I don't mean to offend anyone who has made the decision to have only one or two children by saying this and I know not everyone can have the set of circumstances that I do and I know there is a certain paradox in this, but having several siblings that are both older and younger than my autistic child is a HUGE benefit for us and I think it makes living with autism easier.

Well, today is Good Friday and I need to spend my day appropriately so I better end the blogging for now. We cannot participate in the various services and masses at church because of Samuel, at least for right now. We are fortunate to have EWTN, a Catholic television station, on which we can watch Good Friday services so we will have that on for most of the day. Based on how Samuel is behaving in church, I do envision a day, several years up the road, in which we can start participating at church during Holy Week again.

Mobile Chaos!

Baby girl just started walking this past week. She is the latest to walk of my four children, at 16.5 months. She can hear me open the dishwasher door from the other side of the house and she toddles over immediately to "help" me unload it, whether I'm in the process of loading it or unloading it.

The basement playroom is her favorite place in the house. She was motivated to learn to maneuver the stairs so that she could get down there to play. The toy pile on the stairs was a creation of Samuel's. It stayed around for a few days and Samuel wasn't very willing to clean it up.
I watched Oprah's interview today "The Faces of Autism". A few of the families from the "Autism Every Day" video were there. I'm glad there were some hopeful, encouraging comments about living with autism in the family, bit I'm still left with the same impression after watching this as I was after watching the interview on Larry King Live. I don't like how those who are getting media attention are portraying autism. They are very negative and make autism sound like a death sentence, as I've heard others say. As I said before, those of us who do not have this view need to get our voices out there as well.

Autism Speaks - With Many Voices!

Did you happen to see Larry King Live on CNN tonight? He interviewed Bill Cosby, Toni Braxton (the singer whose son was recently diagnosed with autism), Suzanne Wright (founder of Autism Speaks), and several other people.

I do not deny anyone the reactions he or she may have to finding out his or her child is autistic. Just as there is a spectrum of autistic conditions, so there is also a spectrum of parent and family reactions. (I admit that I don't understand some of the reactions and cannot relate to them, but we are all individuals and have varying expectations and outlooks on life) Increasing autism awareness and appealing for help for families of children with autism are good things. I saw both of these portrayed in the interviews last night.

The picture of autism that was portrayed in the interview and in the clips of the video "Autism Every Day" (which were showed between interview segments) however, by no means paints a complete picture of how the population of autistic families is living with autism. It bothers me very much that this picture is incomplete and that the picture that is out there on national television is so negative.

It is time for the rest of us who have different opinions, different outlooks, and different approaches to start filling in the rest of the picture that the public sees. Maybe Autism Awareness Month (April) would be a good time to do this.

I really hope that any parents of newly diagnosed autistic children who saw that interview don't walk away with the picture of despair and frustration that I saw portrayed of autism.

Reflections of a Rookie Blogger and Follow Up to Situation with Academics at School

I have been blogging now for about 6 weeks and am enjoying it immensely. Since finding out my son was autistic I have always been frustrated by the "doom and gloom" approach to autism. It has been such a relief to find such positive (yet realistic and honest) viewpoints towards autism in the many many blogs I have come across. I wish I had looked into this much sooner than I did!

I love all the different kinds of blogs that are out there... the creative, the plain, the well-written and not-so-well-written, the artsy, the dramatic, the popular and not-so-popular. I have had lots of fun getting started and fine-tuning the features of my blog. I absolutely love the freedom we are given to make our own forums by blogging!

Six weeks ago I was just about at my wits end over my son's situation at school . I started looking up some things about neurodiversity and ended up coming across numerous blogs composed by people who do respect their autistic children by accepting them for who they are. I initially had no intention of setting up my own blog, but after a few days of wanting to comment and feeling inspired to tell my own family's story, I did just that! I shared the fact that I had a blog with a very few friends and family members after I had it for a month. It's kind of scary for me to share some of these thoughts with people that I know.

In these six weeks I have become much more settled regarding Samuel. I have met with his special education teacher two times. His learning requirements have been relaxed in his subjects. His teacher is also using a token board to provide small reinforcements for Samuel as he does his work at school. The incidence of behavioral outbursts has dropped since these changes were made. I think his overall stress level has gone down too. He seems more eager to get to school in the morning. His test scores have improved. The exercise I have put myself through in making up homework assignments has been exhausting, but it's nice to know that it is paying off. I better understand what Samuel is capable of and not capable of. Samuel's teacher has been attentive to my questions and requests, and our regular meetings, e-mails, and phone calls to each other are helping me to feel better about Samuel being at school. This has been a tough year of adjustment for both me and Samuel, but now, almost 3/4 of the way through the school year, we're both quite settled.

On the lighter side of things, we had another weather surprise today, about 5 inches of snow! It started as rain Thursday night, which continued Friday morning and started mixing with sleet. School was closed at noon and shortly after we got home it changed to snow. Samuel was happy to have the afternoon free. The only work I gave him the rest of the day was some tidying up in his bedroom. Friday is cleaning day around here!

Now I Can Say "I'm My Son's Advocate"

Early in my experience of autism with Samuel I was turned off by a few consultants who urged me to be very demanding with the local school system about moving his evaluation process along. "You have to advocate for your child," they told me. At the time I wasn't even sure I wanted to put Samuel in school. I was still convinced that I would be able to educate him, with supports (which I was hoping to get from school) at home. I'll have to go more into that later.
In this early stage, probably because of my strong desire to educate my children at home and because of my somewhat Libertarian leanings, I was trying my best to avoid "government" help. My thoughts were (and still are) also guided by a principle in Catholic Social Teaching called subsidiarity. ( As I interpret this, my childrens' education is the responsibility of my husband and me. I do not believe that it is the job of our government to educate our children, nor do I believe that it should be the job of the government to regulate the education of our children. )

I came to hate the word "advocate" and all the images it invoked (being overly demanding, not accepting the responsibility of managing the care and education of my own child).

I am of the opinion that my husband and I are the ones responsible for raising our children properly. We want our children to grow up with our beliefs and we see lots of problems with farming them out to others to educate them and raise them, especially when we see problems with what they are being taught at these outside places. Well, in spite of having this opinion, after a year of having Samuel at home with me after he was diagnosed I realized that I just did not have the resources that I needed to properly educate him. I also had a new baby boy and a 5 year old son I was teaching. I decided to delegate Samuel's education to our local public school, with very good results. There were (and still are) concerns, but as a resource, putting Samuel in school has been very helpful. This is something that I must constantly weigh however, is it worth having others educate him? I have had reasons to question this in the past year, the scale has tipped more to the "disadvantage" side. In addition to that, Samuel notices that his brother "does school" at home, and he likes the idea of that for himself!

I have come to realize that I have to work within the system that is in place (many many resources are available to us through "government"), and that advocacy doesn't have to be this horrible thing. It is merely doing the job I am meant to do as a parent, to raise my child and obtain the necessary resources to do so. During my son's first 4 years of school I did not question his situation at school. That has changed, due to personnel changes and probably also because I am trying to be more involved and aware of what he is doing.

I can now manage to say "I am my son's advocate," but I do still cringe a little at that "a" word!

Clarification on my intro

After reading the introduction I wrote about myself in my first post, I just want to clarify that I certainly don't think my family is perfect. There are some things I wish I could change. I guess I was just trying to make the point that I accept my family members and their personalities the way they are. I don't go around wishing that Samuel wasn't autistic.

Well, speaking of Samuel, he is right behind me yelling that he is going to break something. I think he wants my attention, maybe some breakfast! Have to run.

My introduction

Hello blogging world. I'm the Mother of 4 wonderful children, one of whom is autistic. He is eight years old and his name is Samuel. I have known Samuel is autistic since he was 2 years old. He is currently in second grade at a local public school and my life has been consumed the past few months with trying to straighten out some problems in the methods being used to educate him. My other children are Samuel's older brother, who is 9, his younger brother, who is 4, and his baby sister, who is one.

I have started this blog to share my family's experiences with autism, and to share my approach to life with an autistic child. Let me start by saying that I love my family just the way it is. Life isn't always easy with Samuel, and as time goes on we are limited in what we can do and how we can do it because of Samuel. However, I think my son is very fortunate to have both an older brother (a good role model and a wonderful helper for me) and a younger brother (who is mighty persistent and often forces Samuel to play with him and acknowledge him. I love Samuel's personality and I am determined that I am going to help him lead a fulfilling life. Do I know exactly what I mean by that yet? No, I do not, because I don't fully know Samuel yet. We have lots of hope for him! He is learning to communicate better all the time and I love the parts of himself that he is slowly revealing to us! In no way do I think that he needs to be "cured"! Nor have I ever gone through any kind of "grieving" process for him. Like I said, I am full of hope for him. It may be a lot of work to keep up with him and teach him, but I never ever consider him to be any more of a burden than my other children are!

Please excuse my newness to blogging, and please excuse any seemingly incomplete or unorganized posts that I have. I'm very very overwhelmed and tired right now! In fact, I should probably sign off for right now.