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…
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.