The end of this past January marked three years since I started this blog. It's hard to remember now, but I started it due to my frustration with the whole "defeat autism" attitude that I seemed to be encountering everywhere. It was very refreshing to come across people on the internet who were more accepting of autism, though who still faced incredible challenges in raising their children "on the spectrum". I also found it very therapeutic to share what I was going through at the time with my son.
I don't post on here so much anymore. It's not that I don't want to. I DO, but spare time is very rare for me these days. I'm not going to complain and lament too much, this is just where I am at right now thanks to what is going on in my family.
Samuel is growing up. It hasn't been easy and I think our "fun" is just beginning! Life for him has changed quite a bit since this past winter. He turned 11 just after the new year. He is almost as tall as I am now and has surpassed even his older brother in weight. He can be quite a force to contend with! He is now taking Risperdal to help moderate his temper. That's not by any means where it is ending, that is just the beginning of what has become a new road for us to journey on in helping Samuel to grow and develop. Amazingly, a new social group formed in our area and Samuel was able to attend that for thirteen weeks this past winter and spring, along with 3 other children close to his age. How terrific that something like this came along to help him recognize and learn how to deal with social situations. There are times he is quite vocal about his feelings ("Mommy, I'm so sad!" or "Mommy, I'm very very angry!"). I am so happy that he is able to verbalize these things and I am trying to figure out how to take him to the next step.. getting past those sad and angry feelings. In the coming weeks we will be starting new in-home behavior treatment services for him. I still use his visual schedule but we are definitely at a point where we need some fresh ideas and strategies to teach him how to get through his day with appropriate behaviors.
Well, the "free" time I had to work on this post is about over. Samuel is behind me telling me (thankfully, with a smile on his face) how "angry" he is with me! I promised him a snack a while ago and I suppose I should go make good on it!
8 comments:
I'm not really sure what to say after reading this. The smile on his face as he said that is something I can totally relate to, a milestone of sorts.
We did risperdal for so long with Joshua. For him his made him eat all of the time! He's on abilify now and has been, well April was a year I think. I can't believe the change in his moods, in his ability to control them and how his aggressivness has waned. MAybe a lot of it has to do with him browing up and maturing.
It can get frustrating sometimes though when we seem to take two steps forward only to take three steps back the following week, at least that's the way it is here.
When I first started my blog almost 4 years ago (will be 4 in September), my initial intent was to leave a bit of a record for my kids and grandkids about things that were important to me, what my thoughts were/are on various topics, etc. And then, I started talking about my grandchildren -the two younger ones -both have autism. My intent in writing about them, showing photos of them too, telling stories that deal with their little quirks, obsessions and, at times, their meltdowns, was to show that they are just two small children with a problem that can interfere with the way they process things and that basically, they are just two sweet little kids who own me -lock, stock and barrel! They are funny in so many ways, smart, and yes, also at times, very frustrating too. But then I think -what kid at this or that age isn't a bit on the frustrating side as well? Like you, my daughter and I are not out trying to find a way to "defeat" autism but rather to help find more ways that will ultimately aid us -and others too -in the process of trying to help these kids become all that they possibly can be and be fully functioning in society when they are adults. Not exactly as easy road at times but being on this journey with them, is really the trip of a lifetime!
Glad you found a little time to express your thoughts today!
I have always liked your blog Jeni for the terrific photos and I like the way you share what is going on with you and your family.
B.D., Samuel is eating all the time now too, though that was an issue even before the medication. Abilify was another mentioned to us, but to get insurance to cover it they wanted us to try Risperdal first. We'll see over the next few months how things go. There are some other issues to be addressed with Samuel and it will not surprise me if more medication enters the picture. For the past 5 years we have been using behavioral methods alone to deal with Samuel's challenges. They will still be an important part of his "education" but we are at a point where we have to do more. His safety and our family's safety is at stake.
B.D., would you mind if I e-mail you some time to ask more about Abilify?
My niece was just diagnosed with AS and I'm popping around blogs to learn more. I can't even imagine how busy you must be with 4 kiddos and homeschooling.
You're right Kara-Noel, I'm beyond busy! I don't have very much of a personal life right now, but I do get a few moments to myself here and there. If I can get back into one of my favorite hobbies in the next few years.. playing my flute and singing in our church choir.. I'll be doing good!
Thank you for sharing Samuel's story. You already know how important high-quality pediatric care is but wanted to share with you and your readers that kids from across the county who have received care in a children's hospital are traveling to Washington, D.C. to talk about how health reform will help them on a day-to-day basis and what yet needs to be done. Learn more about these children's mission and help cheer them on! http://bit.ly/9GgaF6
I am sorry to hear about Samuel, but I am sure, with the correct medication, he will definitely recover, right? Good luck with that.
Thank you, "Anonymous!" There really isn't anything for Samuel to "recover" from. However, there is a challenge to work through! He has been on his medication for 2 1/2 months now. It is helping his "meltdowns" to be less extreme. He is talking more and more about his feelings, which I take as a sign that he is recognizing them more. I am hoping this is a step in the direction of him learning to then control his feelings, which can often go to extremes.
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