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.
5 comments:
Hello,
I agree that talking to someone with autism would definitely have added to the show. I guess there's only so much you can do with an hour, but I certainly wished they had covered more ground. Fewer commercials maybe? ;)
As for church, I understand what you're talking about with avoiding services. My Aspie son absolutely wouldn't go last night so we stayed home. I'll try again tonight. I've missed many, many services due to meltdowns.
Which makes life really interesting because I'm the pastor's wife.
Is there anyone in the church that could help you somehow? I'm sorry if I'm suggesting something that's been discussed before because I'm new to your blog.
But the people in my congregation are slowly realizing that three children on the autistic spectrum is something I can't handle myself. Lately they've been helping me at church as much as they're able. Others have approached cautiously with the statement "I don't know what I can do for you, can you tell me?"
Just a thought anyway.
*hugs* for Holy Week and beyond.
The commercials, especially towards the end, were maddening! I'm not used to watching network television either, so the commercials themselves were also maddening, in addition to the frequency of them!
Asking for help at church is an excellent suggestion. I guess I haven't officially and directly asked for any help yet. For the most part I think Samuel is pretty well accepted by other parishioners. I've only ever had 2 incidences of feeling uncomfortable with others reactions, and one of those was my fault (because I let Samuel bring a noisy toy to church). Some special considerations are going to have to be made when Samuel makes his First Communion and I think I will save any discussion of help or commenting on the situation for when we start preparing for First Communion. We delayed doing so this year and I haven't yet decided if we'll try to have him do it next year.
I think the comment you've had from others Kristine, about not knowing what they might be able to do to help, is very interesting. I bet that is the same sentiment that a lot of people in my church have too. I have considered (especially now that it is "Autism Awareness" month) talking to the pastor and seeing if some of the parents with special needs children could meet with the various organizations in the church to raise awareness. There are several families with young special needs children and while there isn't anything overtly "unfriendly" going on at church, some of us think that awareness needs to be raised, just letting people know that there are special needs children whose families really stuggle with getting them to church.
My DH goes to a tiny Anglican church, one of the advantages is that it's mostly family, so they are happy we come to church, than stay home. I don't usually go b/c I'm not comfortable attending church (in general, not b/c of the boys) any longer - I go for holidays and suppers etc, I'm not a total snob :) - so the little one and I stay home but dh and the eldest go. Personally.. I like that quiet time during the weekend. He likes that they go for lunch afterwards as a group to the village restaurant.
Do you belong to the Guild (Woman's group, different religions have different names for it). They may be the best place to explain what ASD is and what "quirks" your son has and why.
S
I can understand what you mean about having the younger and older siblings and how that would be good for a family with a child on the autistic spectrum.Beauty was born a long time after the others and so she was their baby in a way as well as mine and so they see her still as a baby in lots of ways. She was assessed in the last year as having an emotional age of 12>18 months and she is still a baby in so many ways so it is difficult for her sisters to treat her anything but a baby.As yet they cannot appreciate her problems, it is almost like they feel she is just going to grow up and everything be OK.
One of her sisters really will not accept that she is autistic.It is definitely good for your family that you have the older and younger siblings.
PASG HAPUS (Happy Easter), we celebrated by planting flowers.
Sorry S., I didn't notice your comment on this until today! The Women's group at our church would be a good group to speak with. The ushers at the mass I go to are wonderful, but I'm sure it would be of benefit to raise awareness with ushers at the other masses. There are at least 3 autistic children, and probably several more along with other special needs children, so special needs awareness overall would be good.
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