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The confusing world of Autism

5

July 10, 2006 by Marj Hatzell

My head is spinning and I don’t know which way to turn.

There are so many choices! TOO MANY CHOICES! I just don’t know what to do. I have been reading and researching treatments, opinions, medications, behavior techniques, diets and the like for nearly two years. I still have not made any decisions. I cannot sort out what I have learned. I am afraid to try the wrong thing and too scared to sit back and lose more time.

For instance, the special diets (DAN! GFCF): Everything I have tried so far has not worked. He still gets belly aches, none of the tests are pointing to allergies or hernia, he doesn’t have polyps and his bowels look fine. His behavior did not improve on or off of a diet. I tried some vitamin therapy and some detox. I felt like a fool after a year when nothing changed. In fact, he STOPPED talking. I have taken him to special docs and such for a while, no improvement. He has been seeing a chiro for three years, and although he enjoys it, it isn’t going anywhere.

I know I am not buying the Mercury thing. I have been reading so much about it and it just doesn’t make sense. If Mercury is the cause, why is it that my friends who do NOT vaccinate still have children with Autism? And, why is it that some kids who do chelation don’t improve? I just don’t think this is the route I want to go. I am not sure it is something that needs to be cured.

Neurodiversity: These people have a great mindset. Accept the kid the way they are. But is sitting back and letting things happen naturally going to make him fall so far behind we will never reach him? I am afraid to find out! I want to just accept him and move along, but it is so scary and surreal.

Behavior modification: Do his behaviors need to be changed or suppressed? Is it so bad that he flaps his hands and jumps up and down? Ok, the destructive stuff has to go (it is getting expensive) but do I need to do intense therapy with him 30+ hours a week, ignore the rest of the family and home and hope he improves?

Floortime: Sounds good on paper. I have read tons on it. I want to do the training ($$, as usual) but Darling isn’t 100% convinced. But, is it too close to behavioral interventions? Is changing his behavior wrong?

Cure Autism Now: They have a good message, great research, very vocal, very involved. I signed up to do the walk and field a team. I even told my family about it. But now I am not certain I want to do it. I am not sure that Autism is something that needs to be cured, or if it can be cured. Call me a skeptic. I admit it. But I cannot support them if they want me to raise money for them so that they can do another study on mercury, thimerisol, etc. I know they do so much more, but I am having a very tough time deciding on this one.

Autism Society of America: They are coming across kinda negative to me. They keep talking about how hard it is, how it is torture, how difficult it is for the kids. Like it is a disease. Like it makes my sons’ lives miserable. I will admit it, it is not tea and cakes on a daily basis. But my kids are HAPPY and healthy and love. Therefore they are WORTH having! I don’t think of them as an epidemic or a mistake. I think of them as an expression of Darling and my love. And a gift from God (hence Bugaboo’s name). That may not be their intention, but that is how I took it.

You see, most of the groups out there make you feel like you have to do tons of intervention, therapy, meds, mods, etc. “Your kids aren’t normal. Your kids aren’t typical. They need to be changed, they need help, they are miserable. ” I don’t feel that way! I want them to be happy and loved and to succeed the best way they can. They are loved by us and God, unconditionally. So why does everyone want them to be “OK?” Aren’t they ok?

As you can see, I am having some very conflicting thoughts this weekend. Could be the “AF” hormones, could be sleep deprivation. Could also be me reading into things too much, and thinking too much. Bug Boy told us last night that his brain goes so fast sometimes it makes him want to scream. I totally know what he means. And I know where he gets it!! It is difficult to make a decision when all of these thoughts are swirling around inside my brain like a cyclone.

I think I should go to bed and lay off of the caffeine for a few days…

UPDATE:
I wrote that post last night before I had any sleep. It has been a stressful week due to little sleep and Bugaboo’s health issues. He has a nasty cold and feels lousy and keeps waking up at night. Now, I have been used to waking up several times a night, but then he spoiled me and started sleeping through. I don’t know which I prefer!
So, I am feeling better. Still confused, not so overwhelmed. But still need to lay off of the caffeine.

5 thoughts on “The confusing world of Autism

  1. Anjali says:

    You discussion about the pros and cons about behavior modification remind me about my first abnormal psych class in college. Our world renowned professor said, “Abnormality is a matter of perspective. Are schitzophrenics abnormal, or are we? Are people with split personalities abnormal, or are we? If a person is not hurting anyone and seems happy in life, why do we feel the need to intervene?” I realize it’s not the same thing, but I’ve never forgotten what he said.

  2. Heather says:

    YOUR KIDS ARE OK! They are perfect – they are just as God meant them to be.

    Yes, they need to be “trained” just as my “normal” children need to be trained with right and wrong, reading talking ect.

    For whatever reason GOD KNEW you were the right mother for these special blessings. You are right to read what you are, take what you can use and dump the rest.

  3. M-j says:

    Actually, Anjali, it is EXACTLY the same thing from my perspective!!!
    How much of this do I have a right to change, and how much of this should I try to change? I realize that all children need modification, to a point, and all children need guidance. I just want to make sure I am not overstepping my bounds. I try to think of them as normal children as much as possible, but it is difficult. I just want to make sure I do right by them!!
    Bugaboo is happy. He isn’t hurting anyone. He isn’t hurting himself. The escaping is dangerous, as is the climbing and general destruction of the house. I’d like to change those. But I’d want to change them even if he’d been typical. The rest? We shall see.

  4. Mom Nancy says:

    M-j,

    I don’t have any relevant comments here except to say that I love you and I think, from what I remember about your kids, (the few times I spent time with them) that they are great. I think there are a lot of people who, with all good intentions, tend to look for problems. I know from adopting Noah that the social workers made me feel like a bad mother because my house wasn’t Martha Stewart perfect or totally baby proofed before he could even crawl. They spent tons of time questioning our “racial sensitivity,” as though, somehow an infant was going to feel alienated from his own race if we didn’t immediately start teaching him about Africa. Some of the stuff they gave us to read made it sound like we were just raising him until he could take his rightful place within the Black community. It was hard. I eventually (with DH’s full agreement) just stopped worrying about it all and realized that God made me his mother because I was the best mom for him and he was the baby God intended for me, and do my best.

    You are doing your best and God chose you to be these kids’ mom because you are the best mom for them.

  5. CryssyeR says:

    You are a GREAT mom, and you are doing what is best for your children. Don’t take everything you read and internalize it to the point it paralyzes you. Each child is unique and deserves unique consideration for his/her issues. I won’t compare any situations I may have faced to yours, as that would serve no purpose, but I think you are right to research, observe, question, then decide.

    And, right on Heather!

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