Monday, July 26, 2010

Ready. Or not.

**I actually wrote this post about two weeks ago, but still wasn't ready to publish it. At this point, I feel like I can't go on explaining things about our family life without a little more disclosure, so I've decided it's finally time.**

I'm sure that those of you who have been reading the blog for awhile have noticed a change lately. Not as many posts, not very many personal family stories, a lot of randomness.... and I can assure you there is a good reason. The Vermillion home has been facing some challenges and changes as of late---challenges that we haven't been ready to share with the world wide web. Challenges that we've even been hesitant to share with close friends and family.

While Zak and I were on our anniversary trip, we had a long discussion about our privacy and what things we are ready to share and what we are not on this blog. The blogging world is a pinprick view into a person's life and we weren't sure what part we wanted people to know about. In the end, we decided that because this is such an enormous part of our current life and will continue to be for many years, we would not be able to keep writing this family blog and share with our friends the comings and going of our everyday life without revealing our newest struggle.

Back in March, after many weeks of observation, late-night discussion, and hours of prayer, Zak and I decided to have Jakson evaluated for autism. After an extensive evaluation and a flurry of tests, Jakson was diagnosed with autism, anxiety disorder, and separation anxiety disorder (yes, apparently, that is a real thing).

In retrospect, his diagnosis was a long time coming. From infancy he had displayed behaviors that fell into the spectrum, but we had always dismissed them as quirks. Not making eye contact, not turning around when we called his name, incredibly high pain tolerance, not recognizing emotions.... There was always a reason to dismiss this delay or that strange obsession. The turning point came at Disneyland while riding Buzz Lightyear, coincidentally, the only ride he did not cover his ears on. Jak was so, so excited and his elation displayed itself in stimming every time we came off the ride (stimming happens when a person becomes overstimulated-Jak's stimming behavior is hand flapping, but every kid is different). I recognized it at once because of the many years I had observed the same behaviors while running camps for people with disabilities. At that point, all of the pieces came together.

One fringe benefit of his diagnosis is that I finally have an "explanation". I have always wondered why he has been such a tough child to parent. Other parents didn't seem to have kids that had meltdowns in Target during every.single.trip and about totally obscure, notrelatedinanywaytothestore reasons. I thought for a long time that I was just an exceptionally terrible parent. So, while the diagnosis is certainly no excuse, it is a reason.

The months since his diagnosis have been difficult. I sometimes feel sad that Jakson may not have the kind of life that I assumed he would, worried that he's already not doing many of the things that his friends do because his various fears hold him back, overwhelmed because most of the time I have no idea whattheheck I'm doing as a parent, but I am so grateful for the knowledge that I have that the Lord is in charge, that things will work together for our good, and that "men are that they might have joy." He wants us to be happy, He will help us, and our family will be okay.


A disclaimer:
One of the reasons that I didn't want to post about Jak's diagnosis is that I have discovered how controversial the world of autism can be. I'm not looking to find the "cause" of Jakson's autism nor am I searching for a "cure". Autism is not cancer, it's not a cold, this is basically my child's whole being. His personality without autism would be completely different. Sometimes it would be easier to deal with, yes, but Jak wouldn't be Jak without the dinosaur obsessions, his organizational skills, or his need for a tight squeeze---all things that can be attributed to autism. It's like saying that we should cure Zak of his dislike of Mac and Cheese or me of my math abhorrence. This doesn't mean that we won't involve Jak in therapies or special preschools-I don't believe that we should deny that he has some challenges that need to be addressed so that he can function in society, but my goal isn't for a "cure", instead it is for Jak to lead a happy life. Even if it isn't the life that I had originally envisioned for him.

24 comments:

Brittany said...

I think this post is great. I know it can be rough making decisions about what to tell people and how to go about things. Just know that we are all thinking and praying for you're family. You and your husband are great parents! Don't ever doubt that! And if you do look at the sweet smile on that little boys face and it'll reassure you in a second! :o)

Valerie said...

Thank you for opening up to all of us out here. You sound like wonderful, supportive parents. As a teacher I find that my students with the most open and honest parents are the happiest and most successful.

Katherine said...

what strong parents you are. and jak is so blessed to have you. you are in my prayers.

Covey and Justin said...

A big hug to you and your family. God knows what an awesome parent you are to give you such a wonderful soul to raise up. Always trust your decisions and know that you are the best person to make them despite what others think or say. My older brother is deaf/blind and my parents had to make TONS of tough decisions but it has all turned out despite the struggles and the hateful comments from others.

jacs said...
This comment has been removed by the author.
jacs said...

What a blessed boy Jak is to have such an amazing Mama and Daddy (and I know you feel just as blessed to have him and Storey). He'll do great because he'll have you in his corner his whole life. Just keep Heavenly Father close and He will give you the strength you need. You are in our prayers. :)

Anna said...

This is beautiful and he is lucky to have such loving, protecting and strong parents. I am forwarding this link to some close friends of mine who also recently got answers.

North Family Arizona said...

Man... Holly and I miss you guys!!!! We smile every time we think of your family... which is just about every night as Holly works in the sewing room...

We love Jackson and wouldn't change a thing.

Phil

Maren said...

Yes, EFY is most definitely a camp for people with disabilities. ;)

All kidding aside, though - you and Zak have been prepared for this throughout your lives. You have been made "tight like unto a dish" by Him. So I trust that your little family is going to be just fine. But we're praying for you anyway.

Stacie and Tony said...

Your son seems like a beautiful boy with great charactor! You have such a honest, real, and positive outlook. As a teacher of childen with autism... their potential is limitless and our expectations shoul be also. The Lord will give your family strength and guidence and have he to has given you your increciable son Jak!

Kaity said...

wow, beth. you sound like you guys are in a really good place. you are a great example of overcoming obstacles. thank you for sharing.

Gina said...

Thanks for sharing, Bethany. Your family is in my prayers. You are both so strong and will continue to be amazing parents to both Jakson and Storey.

sara spils said...

I heart your face......all your faces! My heart is full and I love you all forever. My mom is yours anytime you need her!

Amanda said...

You are a great mom, Beth.

lindsay said...

I think you guys are amazing parents, it's obvious just from reading your blog. It's so hard when you finally piece it all together, but at least now you know what you're dealing with and can face it head on.

Lisa said...

I have to agree with the comments already here. You seem to be wonderful parents and I know that you'll do whats best for your baby. Stay strong and may you find peace.

Stacy said...

Don't you just sometimes want a because answer? Seems like life's challenges would be so much easier if we knew the purpose of them. You guys are such a great team I am sure you will find all the right resources for him and you. We spent some time at the Pingree School for Autism in SL and they were so great. They have an integration preschool that Ainsley did for a bit. I hope that life settles down for you sometime soon. These last few years have been a ride for you!!

Catherine said...

Thank you for sharing. I cant imagine what you guys are going though as parents. Your blog was so well written and it sounds like you are starting this journey with an amazing amazing attitude that I don't think many parents would have. God Bless!!!

Veronica said...

Wow, Bethany, it does seem to make perfect sense! In all I have read about your little boy, this sums it up. My little brother was diagnosed with pretty severe aspergers when he was really little and while his life WOULD be different if he didn't have it, he wouldn't be Philip. He is now 25 and while you would NOW never know it upon meeting him that he has aspergers (because he has outgrown so much of it), he is for sure a little different when you get to know him. But he is absolutely BRILLIANT. And FUNNY. And IMAGINITIVE. And he is Philip! And we love him and all of his quirks.

I would say I'm sorry that you and Zak are facing this, but I see how Philip has blessed our family and all I can say is you are in for a fun and crazy ride! Hang in there :)

hillari said...

Wow, thanks for sharing this. I would think knowing would make it a little easier to deal with or at least understand when he is acting inappropriately. I've heard some of that controversy as well.
I've always thought you were a little too hard on yourself as a parent--I'm sure your mostly kidding when you imply that, but I think you seriously are above and beyond a spectacular parent.

Princess Martha said...

I can only imagine how hard it was for you to write this post. Good on you for being so strong, and remember you were chosen to be Jak & Storey's mum, so you must be a great parent, doing a great job. I have been following your blog for a couple of years & think they are gorgeous regardless :-)

Lori said...

A friend of mine sent me this link to your blog. I have a post so similar to this saved waiting to be published that I know the Lord led me to this one. My son (also Jack:) is three and was just diagnosed with an autism spectrum disorder as well. I can't tell you how I felt reading your post, but it was nice just to hear someone else say very near the exact things I am feeling right now. I'm a social worker so I also knew early on that some of Jack's behaviors were attributed to something other than just "oddities." My Jack's stimming behavior is rubbing his hands together and his obsession is letters and words and we can't go in Target right now for fear of seeing Shrek. Anyway, I just wanted you to know that your post helped me and I'm glad that God led you to share. As frustrated and truly saddened I am sometimes by how my vision for Jack's life is going to have to be drastically altered, I am so thankful to have the child I have - exactly the way God created him! I cannot imagine all the wonderful personality traits that I would have missed out on without Jack being specifically like he is! Thanks so much for this post!

rawhide said...

hey beth...thanks for sharing! you and zak are great parents and i know that you can work through this challenage as well. jak is a great kid and will keep making you love him!!!

Bridget said...

I agree that it is hard to decide what to share and what not to share with the blog world, especially when it comes to your kids. I think Jak is in the right place with the right people. You are awesome!

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