Tuesday, April 20, 2010

Some difficult topics

I'm choosing today to discuss some things that are challenging for me to talk about. I would like to get them off my chest, and hopefully I will be able to keep the perspective necessary to deal with them. This has the potential to be one of those long posts, so grab a cup of coffee, or alternatively, move on to the next blog! LOL The choice is yours! ;)

The first topic is one I mentioned briefly last week when I was discussing the Blue October concert tour to promote suicide awareness and prevention. This topic took on a new importance to me in the last few weeks. I had read online and in books that adolescents with high functioning autism/Aspergers have a higher rate of depression/suicide than their neurotypical peers. This is also true for adolescents with epilepsy. So I have had it in the back of my mind to keep my eyes open.

I didn't need to look hard.

During one particularly bad day, Austin blurted out, "I'm tired of everything being so hard for me. I wish I were dead."

Now, I know that's more a result of frustration and not a declaration of intent, and he even indicated so a few hours after the episode when he came to apologize to me for saying it. But it let me know that it was time to start a dialogue with him, and with my girls, about depression and suicide. (And yes, it did make me very upset... I did my best to hide it from him, but thanks to RDI he's pretty aware of my facial expressions. That's the reason he came to apologize later. He said he knew it upset me. )

We talked about feelings... how good ones and sad ones come and go. I used the song "Jump Rope" from Blue October, which is one of our favorites, where there is a line, "Up, down, up, down, up, down, yeah. It will get hard - life's like a jump rope!" as an illustration of this concept. I also talked about how some people feel so sad that they don't want to be alive anymore, and they don't feel like they can tell anyone. But that if you feel sad more than you feel happy, or if you feel so sad that you want to hurt yourself, you need to tell someone: Mom, Dad, Nana, Papa, an elder at church or the pastor or youth pastor, or even call the 800 number for the suicide prevention hotline (1-800-SUICIDE).

I know this is a heavy topic for little ones like Reece, and I knew there was a risk in talking about this stuff with my kids with autism at all (that they might perseverate on it for awhile). But I decided that for us it needs to be one of those topics (like with sexuality), where I keep it as open a topic as possible, to make sure they know they can talk about it with me or my husband at any time.

The next topic involves Reece. The good news is: she has developed self-awareness! The bad news is: she has developed self-awareness! ;)

Self-awareness, like her ability to speak, was one of those things I have been praying earnestly for. I felt like, until she could tell which of behaviors were not in line with her peers, we couldn't really expect her to want to change them. I could give her rules for behavior in certain situations, but that wouldn't address the underlying issues. And I could never come up with enough rules for every situation she could possibly encounter! Our world is MESSIER! That's an RDI acronym for:

Multiple (demands, roles, plans)
Ever-changing (problems, conversations – have to make continuous course corrections)
Simultaneous (words, expressions, facial expression, body language, context)
Surprising (the unexpected happens with little warning)
Imperfect (what is good enough – can’t do everything perfect)
Emotional (integrating thoughts and feelings to make decisions)
Relative (context is a factor)

So I'm very pleased that she has finally become aware of herself, but it has brought with it a host of sadness. Where she used to have a meltdown and hyperfocus on the meltdown or the trigger for the meltdown, now she focuses on herself and how she shouldn't have done what she did. She told me last week that "The bad thing about autism is that it makes me cry every day." And she cries about that, too... about the crying. She knows that most people don't cry every day, but that she does. And she realizes that things get so hard for her, or she misunderstands or misinterprets something, and it makes her cry. She has also realized that the reason she doesn't go to sleepovers or birthday parties like her sister is because of the autism-related behaviors (and the crying).

So now, like I did when she finally started speaking but it was hyperverbal and directed AT us rather than with us, I find myself wishing we could go back. In this case, go back to when she was blissfully unaware of her differences. It breaks my heart so see her so sad. I try to use Austin as an example... he became self-aware around the age of 9. In fact, it was one of the reasons we decided to pursue a diagnosis once we knew that Reece had autism and that Austin likely did as well. Austin became aware of his differences from other kids, and was labeling himself - stupid, a baby, dumb. So I point out that Austin doesn't cry so much anymore, that he grew out of all the crying. It doesn't help much because she sees Austin as being mean because he's in the middle of the teenage angst stuff and likes to be alone more than he used to.

Which brings me to my 3rd topic: teen and preteen hormones. They have been running amok at the Black Pearl Academy. Riley, who is normally my resilient and level-headed, though somewhat strong-willed and oblivious young lady has turned into a tear factory. She cries just about every single day. Her triggers? Your guess is as good as mine! Once it was because she thought her writing curriculum was talking down to her. Another time it was because she had asked to exchange her "I (heart) vampires" shirt for an "I (heart) werewolves" shirt and her Nana asked, "Are you Team Jacob now?"

Last month she and I had a huge confrontation where she declared that I didn't love her at all, that she is treated unfairly, that nobody understands her, that I like Austin the best, and on and on for almost 2 hours. To this mom's heart it felt like "101 Ways That You are Screwing Up". It still hurts painfully to even think about the things she said to me. But they are her feelings, and whether or not I agree with their validity, she feels them.

From Austin, I've gotten the promise that when Riley joins the youth group at church this summer, he will no longer be attending. I have just gotten him to the point where he will go on Wednesday nights. He still doesn't talk to anyone, though it is clear to me that he is liked. People come up to him during the greeting at church and say hello to him by name. A couple of the boys have friended him on Facebook. I have been encouraging him to open up. He is afraid of looking dumb or saying something dumb. I told him, "Boy, don't we all!" :)

His issue is that he is afraid Riley will say something about him to embarrass him. He is also afraid that her behavior will embarrass him because she talks a LOT at church, and is more social and more dynamic than he is.
I've spoken to the youth pastor about it and the good news is that the high school and junior high don't do that much together, so if we can survive this coming year with both of them being in the junior high youth group, we have a good chance for a couple of years... and hopefully by the time she joins the high school youth group they both will have matured enough to handle it.

Austin feels threatened by Riley. He has been for many years, and I'm haunted by the words of the neuropsych who diagnosed Austin and told me that I would not be able to homeschool them together without Austin's self-esteem being damaged. I can hear her saying, "I told you so!" And Riley, from her perception of my favoritism of Austin, feels threatened by him. It's not limited to academics, either. I think I've done a fairly good job of handling their academics by using different curricula, using for both of them books that do not reflect grade levels. And Austin has his baseball where he excels, and Riley has her dance, singing, drama, etc. But there is something there that they just cannot seem to handle between each other, and that I can't seem to help them overcome.

So no you know the topics that have been on my mind recent, and with them, my heart. Yesterday, a good friend forwarded me an email that contained this quote from Jeannie Fulbright's (Apologia Elementary author) blog post of April 18th:

"I never understood how this “thankful in all circumstances” concept worked until I realized years later that those horrid struggles (that, at the time, I thought were God’s punishment upon my life) were actually the things that grew me, humbled me and gave me the greatest testimony and maturity as a Christian. They were far more important to my character development and my walk with God and my ability to be full of peace and joy in all circumstances, than any happy, good thing that happened in my life. Those horrid struggles were gifts. So, yes, we are to be thankful for even the struggles we encounter."

My friend could not have known how completely I needed to read those words yesterday. If days were colors, yesterday was the deepest level of black. I am thankful to her for following the leading she felt from God to forward that to me, not knowing how it might be received! It helped considerably.

"These horrid struggles are gifts."


Penny said...

Nice post - that quote from Jeanne Fulbright (sp?) is a theme I've heard again and again the past two or three weeks. Maybe Someone is trying to get through to me?

Thanks for sharing from your heart.

The Glasers said...


I love how you are framing this and trying to put this into perspective in the middle of a storm! You are amazing!

poohder said...

You are strong Jennifer to write of your struggles. It's wonderful that you now have such a brave outlook. God is good!