Wednesday, July 09, 2008

Two weeks ago...


It was exactly two weeks ago that I was piling all the kids in the car, to head out to Ivan's appt. To be honest...I still don't think I have quite come to terms with everything. The word autism is like a ticker that just keeps running through my mind. My child...with autism? No, no it can't be.

I have cried a lot of tears, I have read a lot of books, I have read a lot of websites. I have prayed. I have been researching. I keep saying the word over and over. I have told almost all my friends, as if saying the diagnosis out loud will finally make it feel real.

There is so much info out there that it is overwhelming. And there are times that I look at Ivan, and think no my child is normal. There is nothing wrong with him. And I will be brought back to reality. My reality. Every day with Ivan...is a completely different day. One day he will be fine with the transition from breakfast to getting dressed to running an errand. The next he will be in the corner, with his hands over his face, breathing heavy and avoiding everyone. One day, he will be fine with the McQueen cup the next day he won't. One day, he will respond to his name. The next he won't.

I feel like there is so much work left to be done.

I have had so many people ask me if there is anything they can do. The answer...so far anyway...is not really. You can let me talk, and not get frustrated if I cry, you can let me vent. If you find a good gluten free product, you can send it to us. ( I would be happy to reimburse). If you find a great book or article or story or video on autism you can send it to me. But most of all, what we really need is love, support and understanding. And we have already been given those three in abundance. And I am grateful for all of our family and friends who have stood by us. We love you!

**I realize that this probably doesn't make very much sense. Sorry, just getting my thoughts out!**

6 comments:

Shweetie said...

Hi Marie,

You don't know me, but I happened upon your blog from a friend of a friend's blog.

I'm a speech-language pathologist in California, and I wanted to let you know (in re: to your June 25th post) that you have not failed your son Ivan in any way and that you are not to blame for anything. Instead, you have done him such a wonderful service by pursuing testing and enrolling him in the services he needs. Research has shown that the earlier children on the autism spectrum start services the better, and Ivan will certainly benefit from starting therapy at his young age. Unfortunately, I have seen so many parents who put off getting their children tested (for years!) because they're too afraid of what the results will show. So kudos to you for doing what's in the best interest of your child, even though I know it must have been very hard for you to go through it.

I know that the word "autism" is such a scary thing, but remember that your child is still the same child you have raised and love, and that no matter what his diagnosis is, nothing will change that. Yes, he may have autism, but he is not defined by it. Having this diagnosis will instead help determine what services he needs and will help guide you and your family on the best ways Ivan learns.

Good luck on your journey, and I recommend looking at the following sites as resources:
http://www.autism-society.org/
http://www.autismspeaks.org/

Jackie

heidigoseek said...

Hey, I noticed some gluten-free pasta and stuff at WalMart. I can send it to you of you can't get it in Hawaii. Let me know. You're doing a great job. Ivan is very fortunate to have you as a mom.

becky said...

I have heard from lots of people that if they are diagnosed so early as ivan that you are setting yourself up for success. Good luck wit all of it. i will keep my eye out for gluten free products.

Avis La Fin said...

Hi Honey,
Your blog breaks my heart!! I can promise that things will look up. Your life is in a turmoil with Ben gone, but once you get back into your routine, life will settle.
Remember that the strongest parents are given these "special" children!! Love You, Mom

The Farr's said...

I think you rock! I think you are doing the very best for Ivan and he is lucky to have you and Ben. I have a nephew who has to have gluten free stuff, so I will ask my sister in law for some ideas and send you some stuff. Let me know if you need anything else! I love ya!

The Anglesey Family said...

Oh Maire!
This is what the blog is for! VENT, VENT, VENT!
I am sooo impressed that you are doing your research. As I said before, my autistic students who had involved parents were much, much, much more advanced than those parents who laid low. As Allison said, "information is POWER!."
If you need anything from the states PLEASE let me know. Even though a lot of places do ship to Guam.....They charge extra for shipping and I will make sure you get it at cost. You are such a great mom and Ivan is going to do great because of YOU!