Thursday, April 22, 2010

You are Faithful

This afternoon, my friend Karen, along with her 3 little girls (ages 6, 4, and 2) and a new baby due in December, buried her 40 year old husband. He died of a heart attack on Saturday afternoon. This incredible song began the funeral service today. I wish I could find a youtube version to share with you. It's been in my heart since I left the service. Please pray for this family.

Faithful by Steven Curtis Chapman

I am broken, I am bleeding,
I'm scared and I'm confused,
but You are faithful.
Yes You are faithful.
I am weary, unbelieving.
God please help my unbelief!
Cuz You are faithful.
Yes You are faithful.

I will proclaim it to the world.
I will declare it to my heart
And sing it when the sun is shining.
I will scream it in the dark.

You are faithful!
You are faithful!
When you give and when You take away,
even then still Your name
is faithful!
You are faithful!
And with everything inside of me,
I am choosing to believe
You are faithful.

I am waiting for the rescue
that I know is sure to come,
cuz You are faithful.
Yes You are faithful.
I've dropped anchor in Your promises,
and I am holding on,
cuz You are faithful.
God You are faithful.

I will proclaim it to the world.
I will declare it to my heart
And sing it when the sun is shining.
I will scream it in the dark.

You are faithful!
You are faithful!
When you give and when You take away,
even then still Your name
is faithful!
You are faithful!
And with everything inside of me,
I am choosing to believe You're faithful.

So faithful...

Though I cannot have the answer
that I'm wanting to demand,
I'll remember You are God
and everything is in Your hand.
In Your hands you hold the sun, the moon,
the stars up in the sky,
for the sake of Love, You hung Your own Son
on the die...

You are faithful...
Yes, You are faithful...
When you give and when You take away,
even then, great is Your faithfulness!
Great is Your faithfulness!

And with everything inside of me,
I am choosing to believe You're faithful!
Oh, oh, oh...
Oh, oh, oh...
When you give and when You take away,
even then still Your name
is faithful!
You are faithful!
And with everything inside of me,
I am choosing to believe...

...You're faithful...

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."

Thursday, April 15, 2010

Where did Niffercoo go?

I've been slack again on the blogging. It's a combination of two factors: first, it's been a rough couple of weeks at the Black Pearl Academy. I find that if I try to blog during these times, I just end up writing things I regret later. Even though one of my "missions" is to explore the ups and downs and the highs and lows of living with and homeschooling children on the autism spectrum, sometimes I just cannot keep the proper perspective. On those days, it's better to be silent.

The second factor is that we've been really busy. This is one of our busiest times of the year, between dance and baseball. And we've also had a few special events to add to the schedule as well!

Last week Reece took part in an art collaborative with the Marcus Autism Center and the Centers for Disease Control (both here in Atlanta) in celebration of Autism Awareness Month. She got to work with a real artist and she was SO excited! Each child painted a tile which will be part of a display at the CDC later this month.

The very next day was the Blue October concert! My husband took the day off work so I could go down and stand in line, since the event was general admission. As a result, I was on the 2nd row! It was awesome! I love Blue October... they are officially my favorite band ever!
And I'm not just saying that because they come out after the concerts and meet and greet the fans. And pose for pictures. (I took 150 pictures that day. Aren't you glad I'm not posting them all? LOL) Did I mention it was a fantastic show and the music is incredible? The tour is to promote suicide prevention, and I intend to do a blog post on that one day soon. It's one of those topics that is hard to talk about, but I think it's important.

Oh, look... how did this picture get here? ;)
Moving on... I also had my first race since the half-marathon. It was a 10K in honor of the soldiers from Georgia who have lost their lives in combat since 9-11. I ran a great race, and it was for a fantastic cause.
So that's what has kept me especially busy recently. The kids have had their usual baseball games and dance classes, and those whacky things called lessons. And none of us are at our best when we're so busy. I know many folks can handle it well, and do handle much more on their schedule than me. I applaud them, and am impressed! But it doesn't work that well for me or my kids. We can manage the busy-ness... it's just not pretty!

And that's it for now... will try to be better about updates! :)

Monday, April 05, 2010

Book Review: The Best Kind of Different by Shonda Schilling

When I learned about The Best Kind of Different through a friend's link on Facebook, my interest was piqued. After all, we're huge baseball fans in this house. What baseball fan doesn't remember Curt Schilling and the famous "bloody sock" during the World Series a few years ago? I didn't know he had a son who had been diagnosed with Aspergers. I clicked the link and read the introduction. These words in particular got my attention immediately:

Seemingly everyone Shonda encountered had an opinion—"he's too spoiled," "he needs a good spanking," "he needs more discipline"—but it was a disastrous first attempt at summer camp that told Shonda something was definitely wrong. It was then that a neurologist diagnosed Grant with Asperger's syndrome—a form of high-functioning autism that, in recent years, has been found in children who at first glance appear disruptive and difficult.

Now in The Best Kind of Different, Shonda details every step of her family's journey with Asperger's, offering a parent's perspective on this complicated and increasingly common condition. Looking back on Grant's early years, she describes the signals she missed in his behavior and confronts the guilt that engulfed her after she came to understand just how misguided her parenting had been before the diagnosis. In addition, she talks about the harsh judgment she's faced from people who don't buy into the diagnosis and how she's used passion and information to fight the ignorance of others.

It was as if Shonda Schilling were in my head! I jumped over to the library website, but it didn't appear that they were planning to order any copies, and I simply HAD to read this book. So I did the unthinkable - I ordered a hardcover copy from amazon! Thanks to my free trial of Amazon Prime, it arrived in 2 days!

Now, it's going to be hard to accurately review this book. I gobbled up the story! So much of what she says resonates strongly with me. I could just start pulling out quote after quote! :) But that might get kind of boring. Well, not for me. Just knowing someone else in the world felt the same things I did/do - the good AND the bad, the guilt and the sadness and the confusion and the joy - reading the same things I have felt so often is really kind of a comfort. I'm not crazy! LOL

Needless to say, I give this book two thumbs up. Shonda is painfully honest about the toll Aspergers has taken on her, on her marriage, on the other children in the family. But, she also talks about the joy in Aspergers and how it has changed her in good ways. The pain and heartache may seem to dominate the book, but they are not quite 3 years into the diagnosis, and I remember that time very well. 3 years may seem like a long time to folks, but when you're talking about something like autism/aspergers where there are new realities to face as your child hits new stages of life, it can sometimes feel like rolling waves of grief. We are not that far ahead of them (Reece was diagnosed 4.5 years ago, and we're approaching 4 years for Austin) and there are still some days when autism knocks me on my butt and I feel like I have to start the grieving and acceptance process all over again.

I'm not one for buying hardcover books, either. But I have to say I am very glad I bought this one! It was an excellent read and I find I can relate well to Shonda and her situation. I wish her family ALL the best!

Friday, April 02, 2010

Family Movie/Game Nights

One of the goals I set for 2010 was to have a Family Movie Night once a month, and a Family Game Night once per quarter. I am pleased to say that we have met this goal for the first quarter of 2010!!

Our Family Movie night for January was Night at the Museum 2: Battle of the Smithsonian, for February was G-Force, and March was Up! I popped popcorn (the real stuff on the stove top) and melted butter over it! And we had soda and something sweet... cake, cookies, brownies, etc. I was afraid it would be hard to find movies that would appeal to all of us, but those three movies seemed to work well.

Family Game Night would be a little trickier... I would get hives just thinking about it! LOL Austin and Reece don't handle games well. But I really wanted to work on being together without a screen involved, much to my husband's dismay! I've been playing games one on one with Reece, helping her deal with losing, or having moves against her that don't help. It's been going well, so I thought we'd start with that game: Sorry!

It was SO much fun! The one we actually had the most trouble with was Riley, because she is used to winning everything she plays, and she wasn't! LOL She got over it pretty quickly, though, and we all had fun with the twists and turns of the game. Since it's a 4 player game, and there are 5 of us, I didn't officially play... just sat with Reece and helped her when/if she needed it. At one point, toward the end of the game, Austin remarked, "I don't regret this nearly as much as I expected!" It cracked us ALL up!

In the end... Austin was victorious! Well, really we were all victorious because we had a fun evening together! :) But Austin won the game, and had to clean up.

I'm looking forward to another game night, and if they continue to be successful, we will start having them monthly!