Tuesday, September 29, 2009

Now What?

I took the kids to the zoo today, by myself...with no stroller....or wagon. :) It was a great day for the most part. Weather was fabulous. Animals were active. Crowds were low. Kynsie and Braylen were well-behaved and played nicely together. Kyan spent the day stimming. I will try to video him tomorrow so you can see what I mean. In a nutshell, he is not playing at all. He is just repeating this behavior with his eyes over and over and over and over. It is concerning and honestly--annoying. I realize that he can't help it, but it gets all over my nerves. I think it gets on my nerves so much because it reminds me of where we are. We are still here. We are almost 3 years into this journey and he is still doing some of the same behaviors. Sure he has come a LONG way, and I try very hard to focus on that, but it becomes pretty hard to ignore the problems we are still experiencing. Case in point. Braylen and Kynsie wanted to go in the petting zoo. Kyan did not. He wanted to go to the play area so he could stim. I let Kynsie and Braylen go in, but could not go with them because Kyan was screaming GO TO PLAY AREA!! at the top of his lungs for 10 solid minutes. Yes, people were staring. Kynsie and Braylen were kind of on their own. Thankfully a friend of mine whose daughter is in B's class, was in the petting zoo area and she corralled my kids and helped them. There was no way I could take Kyan with the animals in that shape. And I HATE it. I hate that I missed that time with my kids. I hate that Kyan missed that fun time, even though he has no idea he missed it. I hate that he has no idea that he missed something fun. I hate that people were staring at him like he is a bad child. I shouldn't care, and I don't for the most part, but it is very hard not to get embarrassed. I explained to the caretaker that he has autism and will just have to work through it, and I honestly may as well have been speaking Chinese, because he obviously had NO IDEA what I was talking about. I hate that people are ignorant. I hate a lot of things today. Can you tell? My list could go on and on, but I will save you my griping because it isn't doing either of us any good, is it?

To cap all of that off, ALL of Kyan's blood work was negative. Normally this is a good thing, right? Well, not necessarily for us. We still don't know what's up with him. Some of his behavior is from yeast and it will get better, but even when yeast is at bay, we are still missing something with him. I know it in my bones, but I have no idea what it is. My hope was that this blood work would give us some answers, and therefore a direction. Instead, I feel like someone just hit the restart button again. Freaking groundhog day in Autism hell.

I DO NOT KNOW WHAT TO DO. I am so frustrated, and seriously don't feel like I am cut out for this. We are doing everything we know to do, and still Kyan is treading water. I am watching Kynsie recover in front of my very eyes and I am so grateful, but it also reminds me that Kyan just isn't making the same progress. And in the back of my mind, I see that window of opportunity from age 3-5, when the brain is most malleable and children with Autism are prone to make the greatest gains beginning to close. I know that all progress doesn't immediately stop at age 5, but I also know that there is good research that shows how critical this window of time is. So the clock is ticking, and it gets louder by the day. Where do we go from here? I don't know. I am going to wrap this up and go to bed and hope that I awake with some stroke of genius, or at least a rested spirit and a strong dose of perspective.

As I mentioned in a previous post, chiropractic and like craniosacral therapy are on the horizon. I expect these do help, but from research, don't expect massive gains from this alone. Hyperbaric Oxygen therapy is treatment that I think would benefit all of my children significantly, but it costs $100 per "dive" and most kids need 20-30 dives to see results. You do the math and multiply times 3 and see that that adds up rather quickly. The doctor's staff actually told me that I would be better off to buy my own HBOT system. The cost around $10,000...used. Pocket change.

SO...I need a game plan and a little divine intervention wouldn't hurt. Suggestions? Sure, I'll take suggestions. Send them my way.

Good night all.


All About the Bailey's said...

I feel your pain, Ethan sounds a lot like Kyan. The meds help with the yeast and the stimming slows way down, but right now he's in stim mode...I do tell him to go sit down and he will listen to me and stop, but I do that like 100 times a day. You are doing a great job and have been a real help to me. I hope we all find our answers some day...some day soon! Some days are better than others.
I plan on doing HBOT with Ethan next summer. We will be going tO NC to do this..now I'm not sure but I've been told that all 3 kids can go in one tank at the same time for one price, could be wrong, might have to call and ask some questions...here is the site for the place we are going to, the reason I picked this place was because another Mom told me about it. http://www.miraclemountain.org/
It sounds like a great idea to buy one, but really do we need anything else to worry about in our lives? Why not go somewhere that we will be taken care of for once?? If you would be interested in going next summmer let me know, I know that the housing is a little different than what you would think but it's free! Love reading your blog, reminds me that I'm not alone in all this.
Have a good day Sunny!

Tracey said...

I am so sorry Sunny, for you and your little man Kyan. It is such a painful thing to watch your child struggle and not be able to know what to do for help. I have felt some of those same emotions like I am embarrassed and I should not be, like the clock is ticking and I am not doing enough (my kids are 5 1/2). My kids are mild but because of that, I have not had the full support of my husband. I chose to start my girls on Liver Life and NDF+ because I felt it was something I could do on my own, was not overly expensive and I could go VERY slow with it. Please don't think of ill of me for doing something on my own, I am just like so many other moms trying to do SOMETHING to make it better. Trying to beat that clock. My husband would not allow me to continue using my naturopath to treat because of finances. I can tell the products are helping them detox and I hope get some of the metals out.
Again, I am sorry for the rough day. Autism has a way of sucking the joy right out of things. My prayer for you and your family is that you have many joyful days ahead of you as you continue on this difficult road.

The Zanoni Family said...

Sunny, I love your blog. I have never met you, but we have a mutual friend in Katie Tanner. I think about you a lot and pray for you and your wonderful kids. Poor Kyan and you...and poor dumb people who cannot understand that he has autism. I am going to say a big long prayer tonight for you guys, for guidance to find the missing link that will help Kyan be released from this Autism prison that is holding your precious son hostage. Christie Z. http://joeyzanoni.blogspot.com/

lesliemarie said...

do you think your kids would go for acupuncture? I'm going to see someone here in town in a few weeks. I'll let you know what my results are, and if the needles are scary! :) Check out http://www.longevityhealthcenter.com/index.php. One of my friends saw him, and was AMAZED at the results. I'll keep looking to see what else I can find. Keep up the good work!

Sunny said...

Thanks ladies. I am looking into miracle mtn. Sent them an email today.asked several logistical questions. Tracey- I don't think bad of you at all. You gotta do what you gotta do. I am sorry your hubby isn't supportive. :( it's hard enough with a solid support system. Kudos to you for fighting for your child! Christie-hello. I checked out your blog and quickly decided that if I had your native Florida 'critters, I would probably give them the house. Doves and toads are fine but snake babIEs-plural-across your toes!?! And gators? I have a new respect for Floridians-not kidding :) And leslie my chiro does acupuncture, so I was hoping to discuss that with him tomorrow, but had to cancel (my employee has the flu, so I have to work) So-please let me know how it goes for you. Evidently our chiro has a laser version of acupuncture that doesn't require needles. ??? I will check out that site too. Will update soon. Thanks for the prayers and comments. I had a Horrible day today. Your prayers, support and comments really gave me a boost. Thank you!