My Hubby Made Me Do It

So you know when I started this blog, I told you how my poor husband was a darn good listener.... and too nice to tell me to hush it up.... and so I thought a blog might give him a break, and be a nice outlet for me.

Tonight.... that sweet husband... suggested I may be overdue for a blog. haha

He was right (far easier to type that phrase, than to say it ;))....but I'm overdue.

It's been a good few weeks... lots of positives I SHOULD write about.... but what's on my heart... and what my gab-fest (now turned blog) is about...is my son... and my anxieties....and my questioning myself as a parent...and the many theories that surround autism.....and the strong opinions that surround autism...you get the picture.

Why the "Deanna Downer" post? haha

Today was just hard. My twin sister got an earful. My husband got an earful. I'm not sure why it hit me so hard. Possibly because we struggled to maintain a good oxygen level for Kenton all day, which left me a little frazzled.... and then I observed one too many strange looks in his direction I suppose. The cold interactions I observe between my son and other kiddos (sometimes adults) that just don't know what to make of him.  The exhaustion of the day to day tricks I have to have up my sleeve to function normally and be able to do normal tasks. Constantly thinking 2 steps ahead in every situation.... never being able to let my guard down in public settings. (Yikes, this just went beyond Deanna Downer straight in to White Wallowing--I'll turn it around, bear with me.)

When we were smack dab in the middle of our Cystic Fibrosis fears... I vowed to myself that I would forever see his autism from a new perspective. This diagnosis, is not one that will take his life... or leave him literally drowning in mucus. How does that not leave you with a new perspective?

This diagnosis isn't going to shorten his life... it just means that things we hoped he'd outgrow, he may not. Things every parent wants to see come naturally to their kids, will be things he has to work very hard at.

One thing in particular today.. hit me hard at his sister's basketball rally. Watching all the boys with their teammates, and videos of them playing, and dad's coaching sons....and it just hurt---some for me, yes, but hugely for my husband. That feels like such a petty thing to mourn....one you don't really even dare say out loud.... after all, there are kids fighting for their life right now, whose parents have far bigger things to worry about than whether or not organized team sports are in their children's future... honestly though. It's something we kind of silently grieve. Sports for a dad and son is such a special bonding outlet. I know there are other ways to bond (and Jason is finding them) and there are many kids who are completely disinterested in athletics.... and that does not lessen their value to any degree. Disinterest, for me, would be far easier to deal with---than this. Don't start throwing tomatoes at me.. I'm not writing him off. We will continue to do everything in our power to get him the physical strength and abilities he needs to accomplish anything he desires.. and maybe someday, what seems so unlikely now, will prove us wrong. If not, the world keeps spinning, and we will help him find other things he can excel at.

Moving on...

I'm a "stalker" on a variety of Autism groups and boards... and while I think most are intended to offer support to parents with children on the spectrum... they get pretty out of hand. Through them, I've learned that there are VASTLY different ideas in this world about Autism.

Some parents will tell you it is absolutely NOT a disease... it's a BEAUTIFUL thing... and even if they could, they wouldn't "change" their child.

Others will outright call it a disease. Speak of it like a cancer that the cure needs to be found for.  These varying opinions make for heated debates on nearly every board I turn to....I'd say it's been far from support at this point, although some of the info, I do find helpful.

So where do I fall on that? Honestly... even though this is MY BLOG, haha, some of those cyber bullies have me scared to even say...but I will. I am somewhere in between.  (playing it safe...really, these people are MEAN!)

I think there is a fine line between "changing" my child.. and what I view as "helping" my child. He is perfect and wonderfully made, no doubt about it... but in order for him to lead a successful, independent life... we have to help him improve on his weaknesses. And we will, at all costs.

I can honestly see the "disease" mentality to some degree. If given the power to snap my fingers and take it away... I would in a heartbeat. Does that mean I don't love him for him? Or that I wish my son was someone other than who he is? Some might say that... but it couldn't be further from the truth. I'd snap because I love him so much. I'd snap to spare him the struggles that he has lying ahead in areas, most people don't struggle.

Like in friendships.

For a time in his life, he seemed generally disinterested in having friends. He seemed happiest alone. We realized that even though that is not what made us happy, it appeared it made him happy... so that was ok. Then we saw a change. He wanted to have friends. He recognized when he was playing alone. He talked about wanting friends. He just didn't have the verbal skills or social knowledge on how to form friendships. Today, God has answered our prayers by putting a sweet little angel in both his preschool class AND his church class. Her role in his life, has taught him a lot about friendship...and has opened him up. He still has a long ways to go, but we thank God EVERY day for this little cutie... and even though I've told her sweet mama, what a blessing she is to us, I'm not sure she could ever know truly what she has meant to us.

So that is a BIG step in the right direction... relationships on a daily basis, with kids that are familiar with him and he's familiar with, are coming around. The hard thing now, is watching him in environments where the kids don't know him. Seeing their looks of confusion about the way he is interacting with them.... or even hateful looks... harsh words. It takes every ounce of self control I have to not turn in to Mama Bear initially...then I'm quickly reminded that they are kids too. The looks of confusion, are because they are indeed confused. The hateful looks and harsh words.... well, I've got no excuse on that one... haha. I'm just glad that I didn't snap today!

Since I started this blog, many of you have messaged me articles that you have found on autism, that are great reads! I appreciate all the knowledge and the heart behind you passing it on. Several of the articles have been on "curing autism"... and although I know I'd be sliced and diced on likely EVERY board I'm on if I uttered those two words together.... as a parent, I do believe it is my responsibility to do everything I can to help my child! I've always been a fan of the "What if" game... and it's got me wondering.... "what if" some nutritional changes made a difference for him??

Through my wellness company, I've learned first hand the importance of good nutrition. I've seen things doctors were stumped by, remedied by proper nutrition..... and I've got to say... my wheels are turning. Why is our society (and doctors) so prone to treatment of problems, rather than prevention.... or determining the underlying cause?  Jason and I will be spending the next couple weeks praying about our next step in trying to help our son... in addition to OT, PT and Speech (did you know I have a second home? it's a black mini-van).

Here's a "teaser" to an article written by Dr. Mark Hyman called "Can Autism Be Cured".

"TODAY MOST PEOPLE BELIEVE that Autism is a genetic brain disorder. I’m here to tell you that this isn’t true. The real reason we are seeing increasing rates of autism is simply this: Autism is a systemic body disorder that affects the brain. A toxic environment triggers certain genes in people susceptible to this condition. And research supports this position.
Think about it. Rates of autism have skyrocketed over the years, from an estimated 1 child in 3,000 to just 1 in 150 kids today. Sure, wider criteria for diagnosis and better detection might explain some of it but not an increase of this magnitude."

Does that intrigue you like it does me? I'll attach the link to the full article below, but there are many out there that are written with the same message.... and although I know there are many fellow parents of autistic kids (and physicians) that would vehemently disagree with the article.... it intrigues me. Why is the number rising at such a drastic rate? Is it possible, with as wide as the spectrum is, that the causes are different for individuals. Some may be born that way. Some may  have had an adverse reaction to immunizations. Some may be chemically imbalanced...and on and on....and if that is true, wouldn't it make sense that their could be a variety of successful treatment options as well? My mind, that is less than a year in to this, says YES.

So for now, we pray. If we go down this road, it will be costly, and timely....and really a total overhaul for our family. I'm not all that organized---exploring dietary causes alone will require a great deal of organization...and time....but we do firmly feel that as his parents we need to leave no stones unturned....

I appreciate you bearing with me and my whirlwind thoughts. I appreciate you not judging me, but just seeing me as a mom, who will do anything for her children....and I appreciate you praying with us for guidance... mental strength... abounding patience every single day.

We are blessed indeed. Today was hard... tomorrow starts with a clean slate (and an hour less sleep---making it really 2:44am---Oy!)

The article link:
http://drhyman.com/blog/2010/05/12/can-autism-be-cured