Saturday, March 13, 2010

I'll do it my way, thank you very much.

As I previously mentioned, my oldest has autism. Just a few things I'd like to say on the subject. NOT ALL CHILDREN ON THE SPECTRUM ARE THE SAME. Look, I know I'm yelling, but hell, I'm getting so tired of people on all sides. As a parent you're damned if you do and damned if you don't. I very rarily go to autism sites on the web because people are SO nasty or militant. Everyone thinks they have the answer and their answer is the only one. People for or against biomedical treatments, people who think you're abusing your child if you vaccinate, people who think you're abusing your child if you don't vaccinate. Do this, do that, don't do this, don't do that. BLAH BLAH BLAH BLAH.

Woe-is-me-ers - If you make your life only about autism and how horrible it's been for you, you will alienate yourself and make living joyless. I understand the fear and grief you go through when your child is going through evaluations and is ultimately diagnosed with ASD. One day you have certain dreams and expectations and the next they are altered significantly. Grieve for those dreams, you deserve it; however, at some point you've got to wipe the tears away and get to work. We don't do our amazing children any good by wallowing in self-pity. Remember, we can and should still have dreams and expectations.

"I am so sorry." Don't be, I'm not. This is a common response when I tell someone Xander has autism. I understand that it can be very uncomfortable for people and they have no idea what to say. Don't say "I'm sorry." My child is not a tragedy. Ask me questions. I have no problem discussing ASD. I want people to be informed. Xander has autism; however that's not what he is. He is a phenomenal reader, hates math, is a great cuddler, can tell you the make and model of any car. He is beautiful, he has a sense of humor, he loves to be tickled. He is sweet and wonderful. He teases his brother, ON PURPOSE.

"Why aren't/are you doing Gluten Free/Casein Free?" Tried it, didn't work. Xander doesn't have gut issues. There are many it works for, but NOT EVERYBODY.

"Must've been the vaccines that did it." Nope, try again. Xander is not vaccine injured; he has infantile autism, not regressive. Looking back at videos of him as an infant, I can see signs as early as 5-6 months. I do believe there are children that maybe vaccine injured but not ALL of them.

"Make sure you give him supplements." Tried it, worked a little, he stopped eating and drinking certain things because he suspected the supplements were in it so what's the point? Plus, they're very expensive, upwards of hundred bucks a month.

"You need to chelate." We did it. Had some results, nothing life changing.

"What has worked for you?" I understand that many people out there are all about biomedical treatments, but they really didn't do much for us. I gotta say, the most effective treatment we've done is Berard AIT. We saw changes within 24 hrs and are still seeing improvements. The increase in his language skills and eye contact is amazing. Facial expression recognition therapy was another treatment that helped a lot. He is much better at recognizing peoples emotions. The treatments that seem to work best for him are those that involve interaction with other people, for example, OT, speech therapy, being in an inclusion classroom.

I'm not looking for a cure for my boy. I really like him the way he is. I love the way he flaps and jumps when he's excited. This means he's happy. I just want to give him, to the best of my and his ability, the skills that will carry him through a happy and productive life. Isn't that what any of us want?

People can tell me what I should  or shouldn't do, but in the end, I'll do it my way, thank you very much.

12 comments:

  1. Bravo Marianna. Someone actually told me today Joshie didn't have Autism because he was too social. REALLLLY REALLLY?????? It was hard not to punch them in the nose. We'll let our social little butterflies play anyday! Except not when they have Noro. So shall we postpone to Thursday now? hahahaha ~ Eve

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  2. Could not have said it better myself, Marianna! Just watched that new show, Parenthood, tonight and one of the storylines is the 9-year-old son of this couple who has just been diagnosed with Asperger's. It will be interesting to see how they go with it. Both of your boys are absolutely precious - keep doing things your way, it's the ONLY way to go. - Susan S.

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  3. Love it! Our two X(Z)anders have a lot of dfferences but are alike too. It took me forever to figure out that my Zander is very social even though he was nonverbal.

    I tried to tell all Mom with child with autism ...Trust your Mom gut. You are the one who will live with the choices you make. When docds disagree with me, I asked them to watch Zander for one hour and we will do it their way..so far none have taken me up on the offer.

    Your Xander is a sweetheart...now Spencer he is the heartbreaker...

    Peace...

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  4. Some people are very bold in their ignorance. I remember before Evan could speak to where others could understand him, I actually had ADULTS tell me my son was retarded! I see autism (at least the way Xander has it) as more of a learning disability. OT, speech therapy, it all worked for Evan's dyspraxia. Just keep on doing what you're doing- figuring new ways to get Xander to learn what you need him to learn. Just maybe once the right method is found, he will surpass the other children because we all know he has the potential to do so. It's just a matter of finding the right key!

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  5. Couldn't have said it better myself. Our daughter is almost 21 - didn't get diagnosed till she was 16. Thankfully, for the most part I couldn't help but go with my gut and my husband and a few people supported me. So very many people, though, don't get it - how can they? Unless you live it, you can't get it. We will keep trying to find things that help her find a way to be in the world that allows her to be herself and use her incredible gifts. Praise God - she isn't like everyone else! She is amazing for who she is.

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  6. xo, my friend!

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  7. Mar

    I think I might have had something to do with this rant coming out and to be honest I am proud - you have handled the challenges so very well and kept a TRULY open mind about what is real, what will work, what doesn't etc. If more people worked with facts and not emotion and also realized that EVERY SITUATION is different, then the world would be such a better place. Thanks for opening my eyes even more and I love you!

    Kaddy

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  8. Marianna, you are such a great mom and Xander and Spencer are lucky to have you! Thanks for your inight and for never lowering the bar for your kids...
    Love you lots ~Kuch

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  9. Well written Haha!

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  10. You rock, Mare! Your friends know you work hard! Loving your kids is the hands down best treatment by far...don't think anyone can deny that!

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  11. Ok, see now I think I have a blog crush!! Xander fell on his feet when he got you, no doubt about it, and vice versa :D Jen

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  12. Thank you, Jen. What a wonderful complement.

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