July 13, 2015….and I’m back from sabbatical. I took a bit of a break from the blog, partly due to work and schedule, and partly self-imposed. I felt like I got into a rut….and the rut was about the bad things when raising an autistic child. The ‘challenges’ in autismchallenges.com became tales of woe. I didn’t want this blog to be all doom and gloom, but after reviewing my own last post I took a break. I kept this all to myself, I didn’t tell anyone and I do apologize for the sudden lack of posts without explanation. Inside, I had to decide how I could give a look into our lives without it always sounding pitiful.
Are there challenges? Of course, hence the name of the blog. I don’t think there has been a more challenging period in our lives compared to the past school year. But with an autistic child there are good things that happen as well. There are fun times and triumphs. And laughter, lots of laughter. I wrote once about Dayna jumping in her bedroom and the noise and damage from her doing so. I mean she’s a fully grown 15 year old jumping like a toddler, we are putting the ceiling downstairs to the test. But here’s the thing….she’s doing so because she is happy. When Dayna is home for the most part she is very happy, sometimes laughing so hard she loses her breath. We may not know what’s so funny, but who cares! There’s a certain level of innocence to Dayna that makes everyone smile. For instance the Wiggles still make her extremely happy. They crack her up. And when she gets home he can’t wait to run to the mailbox to see what came, even though its mostly just junk mail for us. That mailbox is like Christmas morning for her. For all the challenges that exist, and the hard times we endure, she still finds time every day to be happy and jump around. And I mean every day.
There are other good things as well. Friends, family, therapists and countless others that help us out. We are forever indebted to many people for what they have done for us and Dayna over the years. Even people we don’t know personally. I think about the Special Olympics that Dayna competes in each year, and the volunteers that make it all happen. With my new job, this was the first year I was not able to make it. I really missed being there, but just viewing the pictures Deb took that day reminded me of the love and dedication of those who volunteer and work there. In some ways the pictures showed me more than being there. I the large autism community there are many people in our situation that don’t have the family, friends or community to support them like we do. I truly don’t know how they do it.
I could go on and on with the good things, but I’ll save those for future blogs that aren’t always about what is hard. The posts about challenges will still exist too, I just want a more well-rounded approach to how I write this.
Since I took a couple of months off, I also felt an update was in order. When we last left off, Dayna was still having challenges going to school. We were exhausted by the end of the year, she was waking us up as early as 4am in the morning saying ‘No School!’, and would continue every 15 minutes from that point on. It was the same old story, I truly cannot describe the level of exhaustion we had and how much we were looking forward to school ending. We were like little kids waiting for that last day of school. We fought it out and eventually school came to an end. Ahhhh, the sweet sound of absolutely nothing was now upon us in the morning! It was wonderful, but we knew that having Dayna home every day was not the answer, and her extended school year services (ESY) would start back up at the end of June. She would be at a new school as well, the high school she will attend in the fall. During this time we were able to contact one of her doctors, and started to increase her medications. The theory was maybe it was anxiety that was taking over in addition to whatever it was she was unhappy with. She can’t tell us, however she was already on an anti-anxiety medication and while she had grown a lot, her dose had stayed the same. We had spent the entire year trying to solve the problem therapeutically, now it was time to give pharmacology a turn. I know some parents aren’t fond of that approach, however I am one that firmly believes there are advantages to using medications. Her medication was increased, and over the period of two weeks her requests not to go to school have dropped dramatically, and her fighting in the morning has as well. She still does not seem to want to go out in the community, but I think that will come back as well. What a difference it’s been already and she even seems to make more eye contact. She is with a new teacher at a new school (well a new school for her anyway), and this year it will be a very small program so she will get direct attention. Between the two changes I think we are on the right track and I’m curious to see what happens in the fall.
So what’s next for the blog? I don’t have as much time as I used to, but I also don’t want to have such a long delay between posts. When I started this idea I was in sales. I had more time to write, and more time with the family to draw ideas off of. Now I am in an office/operations job that bleeds into my free time often, and candidly I don’t get as much time with the family. I need to be able to continue the blog without it taking as much time, and also so I don’t have to write it at 6am and over lunch like I did today! I’m going to try writing shorter, more concise posts so keep an eye out for those. I’ve been tinkering around with the idea of mixing in some video blogs as well, or maybe even a podcast. Either way I am updating again in some form, and I would love to hear what your thoughts are as well. What do you want to hear about? What questions do you have? Would you listen to a podcast or watch a video blog? Let me know!
Hope everyone had a good spring….it feels good to be back!