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?).
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 the teacher experienced with teaching music to autistic children?
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.
I watched Oprah today. It was really good. Now, I kinda see why there is the controversy about getting the shots. If it's a genetic disorder why would the child be perfectly normal and then three months later start to show signs. They said to look for signs as soon as 12 months, but if there are no signs. It got me to think about Mckenzie. She is right around that age now and to watch her loose her words or stop looking at me. Very hard. I can't imagine your struggles.
ReplyDeleteHow was it with Caleb? Did he show signs early on? I remember when you moved in her was really good with remembering things and knowing all his letters and colors, and commercials...oh and songs. Did he start going back or was there always some signs there? I hope you don't mind me asking all this.
Yeah, I was wondering about that too. What was the VERY first thing that gave you an inkling that he might be autistic (is it pc to say autistic, or should I say 'have autism'). Or did someone else, like a doctor, point out that some of the signs might be pointing that way?
ReplyDeleteThe Oprah show was very informative. Thanks for the heads-up. I'm so glad Caleb isn't as affected as some, like the kids featured. He's such a sweetie. Give him a hug for me.
ReplyDeleteChristy - You are really wonderful at communicating and being an open and honest person, and this specific forum is fantastic. The way you are facing this situation and the way that you are completely open about talking about autism is phenomenal. I know you are not doing anything for recognition at all but do not be modest. You are doing a great job!
ReplyDeleteI am a physical therapist, as I pointed out before, but I am a pediatric physical therapist. If you lived in my area, I would arrange a speaking tour for you to help others with understanding autism and answering questions honestly without reproach. We all need someone like you in our communities.
My question for you, is there a support group in your area? Are they a strong and supportive influence in your life? I find that with the children I work with, a strong support system for the primary caregivers (usually the moms) is very beneficial. Sometimes this is extended family or friends and sometimes it is a support group. I can see you being a force to reckon with in helping newly diagnosed families. Maybe not now but in the future, when your babies are bigger. :-)
Thanks for the kind words, Jane. I'm going to answer that support group question in my post right now!
ReplyDeleteHi Christy... Long-time reader, first-time commenter. :) Anyway, I just wanted to make sure you knew about the series ABC news has been doing called Echoes of Autism: Understanding Aspberger's. They've been featuring kids with Aspberger's on World News with Charles Gibson and Nightline, particularly what happens when they reach middle and high school. There's video on abcnews.com.
ReplyDeleteLet me also say how much I admire how open and honest you're being about Caleb and his particular challenges. I think so many people have questions, but are afraid to ask. So bravo, Christy! You are so much more than the Queen of Knitting! (But really I just thought you'd like me to mention that you are, indeed, the Queen of Knitting)
Lauren-welcome to the comments and thanks for mentioning that I'm the Queen of Knitting. ;)
ReplyDeleteI'll be sure to go and check out what I missed on abcnews.com and set the DVR for the rest.
Thanks Christy, that did answer a lot of my questions. I really like how open you are with talking about this.
ReplyDeleteYou would have been great on the Oprah show!
This is a fantastic post, Christy. I remember when you can out to visit us and you were annoyed that people at church were asking you if Caleb had autism. I remember being so impresed at his musical skills. He's really a great kid.
ReplyDeleteChristy,
ReplyDeleteYou are a wonderful girl and mom! My question is: How is Caleb doing with piano lessons? You've mentioned before that he was going to be starting soon because he's so talented with playing songs by ear. Is the teacher experienced with teaching music to autistic children? Is she trying to teach him how to read music eventually? How are his fine motor skills doing? Is he able to play a pentascale for instance? Is he a visual learner?
I took on an autistic student 4 months ago. I feel like I've read so much about this in the last few months. My student is 5 and his symptoms to my understanding are very severe. His main challenge is that when I show him and ask him to do something he'll just sit there and fiddle with the piano. But when he does follow instructions he gets to play with the strings inside the piano or play with my metronome! He's fascinated with that. He is also very routine oriented. (But you know, every kid is to a point)He's a visual learner and is able to see that the music on the page is something that we can use to play the piano. I've made up my own little form of notaion coordinating the notes on the page with the keys with stickers. He's making small progress each week with a lot of help from his mom. After the first month he was finally able to say "Hello" or "Goodbye, Mrs. Crook". That makes my heart go through the roof when he is able to say that! Anyway, good luck, I know you are doing an awesome job.
Ginger
Hey, I watched the oprah show too. I also caught a dateline on Asberger's Syndrome. That all is very interesting stuff. I think the hardest thing that struck me is getting past all the judgemental looks from people and people not realizing all of the things that go on behind the scenes with routines and therapy and just doing the best you can. But, really those people don't matter anyway. What I find fascinating about autism is--why do these little guys have it and who is really in there--you know?
ReplyDeleteI have been familiar with Austism just because I volunteered at a school for kids with special needs. I didn't realize how little attention it was being given and how it is growing.
I think it is cool that you are being open about everything and I think it is good that we are all a little more educated on the subject. Thanks for all the info. You are doing a great job! And...hang in there!
I don't really have a question. I just want to comment on how impressed I am with the awesome mom you are.
ReplyDeleteRight back at you, Tiffany!
ReplyDeleteNo question from me either, except that I think it is so great that you are so frank and open with everything. It's really cool to hear about this from a "real person" rather than from Oprah. (You know what I mean, right?) Your kids are so lucky, and you're a great example to all of us moms! (But I thought this even when you lived in Lafayette.)
ReplyDeleteHey Christy, I've loved these posts for this month. I too, am impressed with your open-ness and your ability to explain autism and Caleb's situation so well. I love that kiddo! It has been neat to see the strides he makes. Every little step is SO big for him, and it's neat to see how you and Carl react when he's doing something well. It's great. I remember even when he called me "Snowman" because of our singing in Nursery together, I was just happy that he was acknowleding me and clearly remembered me well. He was always my best singer. And now, to have him say, "Hi, Wendy!". Just imagine what the next year will bring!
ReplyDeletep.s. When are his piano lessons? Maybe you could drop Eva off here, since it's so close???
Wendy-I'll chat w/ you about possible playdate possibilities during Caleb's lessons! I thought it was cute when Caleb called you "Snowman", too. I'm glad he's moved on to calling you Wendy, now. He calls Marsha "SpongeBob" for some reason. We're still working on that one. At least he's consistent.
ReplyDeleteChristy-
ReplyDeleteBecause of you and Caleb, I actually sat through the whole Oprah episode. Once I get through my comp exams, I'm going to talk about April being both Autism and Abuse awareness month. Sadly, I can cover the abuse part pretty well, but I planning to link back to those post and your blog in general while talking about autism. If that's OK with, of course.
Christy,
ReplyDeleteWhat an amazing woman you are! Caleb and Eva are lucky kids!
You are not only a great mom, but a fun hostess, clever party planner, good cook and caring friend. You know I could go on, but I don't want to take up too much room on your blog...
Keep up the good work!
~Gigi
Melessa-link away.
ReplyDeleteGigi- Thanks! You can take up all the room you want for comments like that! ;)
I never told you how sorry I was that day in Nursery when you picked up Caleb and Kori and I asked if he was autistic! One of my dear friends has a son with autism and as I watched Caleb in nursery I noticed he showed some of the early signs of autism. I asked Kori and she said he didn't have it and I didn't want to say anything to you... I didn't know you that well and still don't. Its not my place to comment on some one else's child.
ReplyDeleteAnyway I just wanted to apologize about that whole awkward moment. I love Caleb and he makes me smile everytime I see him.
Audra-truthfully, I don't remember you asking me that. Was it after I already found out or before? Anyway, we're actually grateful now to the people that said something to us because I wouldn't have tried to learn more about it and might have taken his diagnosis harder. I kind of eased my way into it and I think I've handled it pretty well.
ReplyDeleteA friend of mine gave me the link to your blog. I have been struggling with helping my oldest son over the past 3 months. He's been diagnosed with ADHD and oppositional something or other. But I just don't feel half an hour of an MHMR psychiatrist (this particular place doesn't work for you honestly) asking him simple questions & reading his "ohio scale" was enough. Since then he's started on meds, wich act as sedatives. Just masking whatever his true (I feel may be physical) problem is. There is no counceling offered or actual testing offered to find the real problem and treat IT. A lot of what you have described with your son is what I deal with in my son. My son is able to do some "school work" but only on "good days" and at home. He has been removed or expelled from school so many times in the past year...that I am just emotionally bankrupt and am homeschooling...as best I can...while struggling to deal with a dramatic 4 year old girl (LOL) and a very fussy/needy/ difficult...almost 3 year old baby of the family (my youngest son). I just now got them all on CHIP and plan to kiss MHMR goodbye. I have no support in this from family because "he's doing so much better on those meds. And the MHMR case worker will help him transition to the classroom. She's just been busy with other kids." But I want another opinion. And honestly...ADHD never settled well with me. I didn't know why. But it just never did. I always felt like David was "special." But I couldn't put my finger on it...even back in his very young, toddler years. Even just something about his face or maybe the way he looks at people. Just something was not right. Since then things have gotten worse with school, behavior, recalling things, comprehending basic things, on and on. Reading your blog maybe me that much more confident that regardless of wether I have anyone behind me...I need to "fire" his current "doctor" and find someone who will listen to me.
ReplyDeleteYou are doing such a great job. And have so much patience and hope. Hats off to you! I try but fail so many days out of the week.
Erin- I don't know how to reach you other than the comments...
ReplyDeleteI feel for you. If you're not comfortable with the answers you've been getting from psychologists/doctors, you have every right (and responsibility) to move on. Find someone that will listen to you and your concerns. You know your child best. While there may not be easy answers to your questions, you should feel comfortable with who you are working with to ask things and question previous a previous diagnosis or find other options for medications (which frankly, I know nothing about).
Good luck to you!