New questions and answers added at the end of this post!Okay, did you watch it? The documentary Oprah kept referring to is found at the
Autism Speaks website. I posted a link to it sometime last year. I found the episode to be pretty basic and informative. It certainly made me cry. I have a lot to be grateful for. While Caleb exhibits a lot of the characteristics mentioned in the show (and some others that I wish they could have gotten into more), he is high functioning so I can expect him to make great strides in these critical early years of his development.
Do any of you have any questions for me? I thought it might be a good time to have a Q&A blog post so you can ask me things you may have wondered about.
Here are some things you might be interested in to start:
Does Caleb have special therapists?Yes. Caleb goes to preschool every morning and his teacher is a speech pathologist. She is very knowledgeable about autism and is an excellent resource for our family. Caleb also sees an occupational therapist during the school day to work on his fine motor skills. Once a week I have a speech pathologist in our home to help with some of the issues we deal with around here. I am also trying to find a way to come up with a couple extra hundred dollars a month so I can hire a university student to help me with Caleb 3-5 days a week.
Is Caleb potty-trained?No. He will go pee in the potty in the morning and at night. He used to go in the potty all the time but has regressed some. He has never gone poop in the potty. He hates the sensation of sitting on the potty. He has always gone pee standing up. I hope that someday we'll be able to have him trained completely but for now that just isn't in the cards. Changing his pull-ups during the day is a battle that I dread. I'm pretty sure Eva is going to be trained before Caleb.
Can Caleb dress himself?Not completely. He is just starting to learn how to do buttons and he learned how to put his coat on and take it off just a few months ago. He can take his shirt off but can't put one on. If I put his head through the hole he can usually get his arms in. He can't put his pants on but he is finally getting better about being able to pull them up. Eva is more advanced in this particular skill set than Caleb at the moment.
How did we find out about Caleb having autism?Caleb showed a lot of signs early on but we had no idea he wasn't developing normally at the time. I think that maybe if he wasn't our oldest, we might have caught on sooner. Caleb was always a little moody, not interested in playing with me one on one, etc... We used to think it was really cute when we would move one or two cars out of his line and he would then stop whatever it was he was doing and put them back. I also thought his speech was developing normally because he had so many words! Unfortunately, all his words were taken from tv shows, commercials, or songs that he had heard. He rarely responded to his name. He wouldn't answer basic questions for people. I always thought this was normal and that two year olds just don't do that anyway. He was always big for his age and I just thought people were expecting a lot from him because of that.
When we got Eva, things started escalating. Caleb got more violent. His outbursts were more frequent and more aggresive. Again, I blamed the terrible twos. I also figured that this would get better once he could communicate better with me.
When we moved to Lincoln, there were a couple of families at our church with sons that have autism. One of the dads asked us if Caleb was autistic. At first I thought that was a rude thing to say to someone--especially someone they don't know very well. Then, someone else at church asked us again. I'm pretty sure I even blogged about how ridiculous it was that everyone kept asking us if Caleb was autistic. I mean, he would look at people in the eye, he was always very friendly, etc...He had some very good skills that some kids with autism don't have. But, it got me thinking. I did some research. I thought that maybe they saw something that I couldn't recognize.
When Caleb went in to the doctor for his 3 year old checkup (Jan 2006), I mentioned his behavior issues and she validated me by saying what he was doing was extreme and that she could refer us to the early intervention program for further testing for possible delays. Autism was never mentioned.
Still with me? Sorry, this is a long answer.
When Caleb started his evaluations with the public schools in February, it was becoming more and more clear to me that autism was definitely something that could be affecting him. They labeled him as developmentally delayed and started giving him services. Technically, he still has this label at school (we are trying to change it now to autism so he can qualify for some other services) but he was officially diagnosed with Asperger's Syndrome back in November of 2006.
What is politically correct?Kayli asked which is the politically correct way to refer to someone with autism. The most politically correct way at the moment is to use people first language. This goes for all disabilities (and adoption, too). I certainly am not offended if people say that Caleb is autistic. I've said it to people before. One thing I don't do is introduce him as my adopted autistic son, Caleb. I wouldn't want anyone else to refer to him like that either.
What about vaccinations?This is still very controversial. The research that has been done has all pointed to the fact that there is no connection between autism and childhood vaccinations. There are many people that do not believe this and are convinced that vaccines have something to do with the fact that their child has autism. For me, this is not the case. Autism is just so puzzling (hence the logo) that people grasp at whatever they can. Just like there are so many different kinds of and causes for cancer, I think it is the same for autism. Genetics, environmental factors, brain damage, etc...could all be contributors. Frankly, I don't care how he got it. I hope the researchers can figure out the causes someday so we can help lower its prevalance but for now, I'm more concerned with helping my son. He has autism. Now, let's help him.
Is there a support group in your area?There are support groups. I'm trying to become more involved in
The Autism Family Network. I have met a few other moms from there and went to a meeting. The only thing that is difficult for us with that group is that most of their fun activities for the kids are held on Sundays and because of our religious beliefs, we just don't do that. There is a message board on the website that keeps me connected with other parents in the city and there are a few upcoming events that are being held on days other than Sunday.
I don't have any family members close by so I depend a lot on my friends. I try to keep my spirits up by going to activities like book group and knitting group. Carl is really good at recognizing that I need these "breaks" from the house and makes sure I get to attend. Those take precedence over just about anything else that could come up. There are also the other parents at church that know what we are going through and we are able to support each other as well.
How is Caleb doing with piano lessons?Ginger, the amazing newly dubbed "National Certified Teacher of Music" in piano, asks this question along with a few others. His lessons are quite atypical at the moment. Frankly, he gets little out of them at the moment and this has nothing to do with the teacher. We just need to keep him going and get him used to the structure of the lessons. He would much rather play his own thing and not do what someone else is telling him to do (wouldn't we all?).
Is the teacher experienced with teaching music to autistic children?
No, she's not. I'm doing my best to help her understand how to best work with Caleb. She wants me to stay there with him (I also have to bring Eva) and he doesn't do well with me around him. We'll see how it works out in the future.
Is she trying to teach him how to read music eventually?
We're using the Suzuki method with him. We will try to have him read music eventually but I don't think he is going to be the kind of pianist that will want to play compositions by people other than himself.
How are his fine motor skills doing? Is he able to play a pentascale for instance?
He can play a pentascale and while his fine motor skills are lacking in some other areas, it doesn't seem to be holding him back with the piano.
Is he a visual learner?
He is a visual learner. He also needs a lot of repetition before something becomes "natural" for him.
Good luck with your student, Ginger. He's lucky to have a teacher like you!
To Be Continued... post your questions in the comments section and I'll answer them as I can.
Oprah Show
https://craftyconservative.blogspot.com/2007/04/oprah-show.html
The Church of Jesus Christ of Latter-day Saints is one of America's fastest growing religions, and its influence circles the globe. The church has 12 million members today and over half of them live outside the United States. Yet the birth of Mormonism and its history is one of America's great neglected narratives. This four-hour documentary brings together FRONTLINE and AMERICAN EXPERIENCE in their first co-production to provide a searching portrait of this fascinating but often misunderstood religion. Produced by award-winning filmmaker Helen Whitney ("Faith and Doubt at Ground Zero," "John Paul II: The Millennial Pope"), the film will explore the richness, the complexities, and the controversies of the Mormons' story as told through interviews with leaders and members of the church, with leading writers and historians, and with supporters and critics of the Mormon faith.
