Thursday, January 14, 2010

A moment of wallowing then moving on.

It can be laughable
It can be aggrevating
It can be sweet
It can be cute
It can be frustrating
It can be repetative
It can be entertaining
Autism can be a lot of things

but this week it has been overwhelming and saddening.

Here's the saddening part. A couple of days ago I was parked outside of Caitlyn's dance lessons waiting for her to come out. Her teacher, a friend of mine, lives in a cute cul-de-sac where a group of boys were outside playing and riding on their bikes. I was attending to Alison (I got out of the car to do so) and I was also helping Nathan learn how to do a basic maneauver with a cup to clean up spilled lemonade on the top of the lid. As I was teaching Nathan this basic task a little boy rode up on his bike on the opposite side of the car. I will never forget his inquisitive look. He looked sweet and innocent in his inquiry to know what was going on inside. I simply waved to him and he waved back. In that moment I felt the distance, cognitively, between this boy and mine. He looked to be about the same age as Nathan. and it made me sad. I so badly want to have that for him. He needs a friend. I good group of boys that will understand that he is different and love him for it. Play with him and includ him. Hes hard to include. I understand that. I guess I am looking for a Christ-like, heaven sent child to take him under his wing and help him be a part of things. Everyone is so nice to him. All the kids at church treat him with kindness. I am very grateful that we havent been confronted with unkindness yet. I fear for that day. I dread that day. I feel like it is unevitable. I would love for him to have someone there to defend him. Parents can only do so much. Then it just becomes uncool. :)
Here's the overwhelming part. Chad and I visited a doctor yesterday, and after a huge batch of blood work done on Nathan we have been advised to go on a gluten-free, casein-free(anything dairy), soy-free diet, corn-free, rice-free, potato - free diet. That doesnt even include the other 40 foods that we need to avoid to due to allergies. No joke. That is not overexaggerated. Basically, think of the Atkins diet - to an extreme and then erase another 35 foods. At first glance it may seem easy, doable tomorrow. It is not easy. I have tried gluten free with Nathan before. It didnt yield earth- changing results. Im sure it is because I didnt remove all of the other things, but it was HARD. What this means is NO eating out, no fruit snacks, no cheese - thats a staple in his diet, and everything has to be purchased organically, and with evrything needing to be "free" of things just say "Ca-ching". I know, I know, take it one step at a time. Tackle one then move to the next. That totally makes sense and I've said it to myself at least a dozen times. Its just a lot, and its one more way to make him different from all the other kids.
It seems like I have been writing a lot lately about the woes of Autism. Its probably because we are going through changes in our household. I dont do well with change. I feel secure in a routine and with systems. Blame it on childhood issues. Comfort, as of late, has not been my friend. I have not been able to find it. Or maybe I havent wanted to accept it. Thats more likely. Chad has been awesome. He has found the positive and that is admirable. I have wanted to wallow in the face of this change. I think everyone deserves an amount of time to wallow, but I fear that mine is coming to the point of annoying. I will need to abandon it soon. Decide on a plan and go... with a good attitude.

Sorry about the venting today but it feels good to get it out.

10 comments:

Michelle said...

My heart ached for you as I read that. I can't imagine. You are amazing. I have always admired you guys. There is a great website that my brother works for in American Fork Utah. It specialize in organic foods. It is a really neat site. YOu can search by certain needs like gluten free. It is like a Costco you have to have a year membership but there stuff is resonable. The webiste has not launched yet but it will soon. It is www.greenpolkadotbox.com. If you have any questions let me know I can have my brother call you. Hope it helps.

Sarah said...

You have been through many other trials and challenges in your life that I know you weren't sure you'd make it through and you did with flying colors. Knowing you and Chad as well as I do I am absolutely certain you will find your way through this too. And when you get stuck, you have Ben and I and 100 other people who would come to help in an instant if you ask.

runningfan said...

Nathan is lucky to have you and Chad as parents! You're doing a great job!

Melissa Hymas said...

Nathan is the sweetest little boy and I am so glad he was sent to you & Chad. Even as a big sister I admire you and want to be like you in so many ways. You will find a way as you always do. We will all help. So heres to finding everything free food thats tasty too. We love you!

Jada said...

In-N-Out french fries are GF/CF, totally fine, get yourself a hamburger, animal style, while you are there, it'll cheer you up! And you can feel ok about what he's eating.

angiedunn said...

I second my sisters comment. You guys are awesome & will be inspired step by step.

The Wizzle said...

Seriously, Nathan could not have a better set of parents. Truly. It is so hard to see our kids suffering, to worry for them and be limited in what you can do about it. I don't know it to the degree that you do, but I know a little. And it stinks.

I hope you can catch a break, something to life your spirits a bit.

Hey - I have a 6 year old who has a very tender heart. Do you think they might like to get together? I don't know exactly where you guys live. It wouldn't be as convenient as a "neighborhood" friend, but we could give it a shot.

Lanae said...

the fact that you are so stressed about this is a testament to your amazing commitment to your little boy. ever since YW five years ago I have always admired you. I still do, you and chad work so well together. anytime you need to break out of routine, come to my mad house and we can go crazy together!

Aaron Harmon said...

Nothing wrong with a little venting now and then. Nothing at all.

the Gardners said...

We tried the glutein-free diet for my son about 6 months ago. Your right, it is not fun, but there is a family in my ward who are all allergic and have to be on this diet and it was nice to have the support and feedback. She told me that it takes about 2 months before you start to see any results and a full 6 months to be completely gluten free (which I'm sure you already knowm, but it helped me know it was going to be a long road). She also said that you can have gluten withdrawls, too, around 2 months into it (which was also helpful to know, since I, myself, wasn't doing completly gluten- free...I cheated!) We did it for about 4 months. I don't know if it really helped for sure, but he did calm down and I did see a behavior difference when he ate certain foods.

While doing it, I discovered I did a more raw diet (more plain fruits and veggies), hwich made it easier for me to think of. I love to bake, but that was just difficult with gluten-free. My friend gave me some good cook books and now I've noticed that even Wal-mart is carrying a bunch of gluten-free pre-made mixes (cake, muffins, pancakes, french bread, brownies, etc)... Since we live in a small town and are limited on our shopping options, this is a big deal here! =) Anyways, it was great to have the support and I'd love to send you the names of the books she lent me, if you are interested. I know she was avoiding soy as well as some other things, too, and she may have some more advice if you need it. Let me know!...hopefully, I made sense!

I know we haven't talked in years, but I've enjoyed checking your blog every now and then and you have been an inspiration to me with your son. My son isn't autistic, but there was a time when we were wondering what exactly was going on. You are a great mom! Keep up the good work!