Balancing Act
by
Aaronsmom on 05/13/2008
I have this image in my head of the Cat in the Hat balancing on a ball with a cake, umbrella, tea cups, and somewhere in the mix that annoying little ...
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...and for me that starts to get dangerous. Although we've had a diagnosis for two years I am still very much a novice at all of this. I depended too much in the beginning on doctors who didn't know anything about ASD and have learned the hard way that it's up to me to educate myself to make decisions for my child. The problem is there is so much out there I don’t know where to begin. Some of these books look like text books and I don’t know how much applies to my son. I know Asperger is on the spectrum, but how much are they alike? Does the same information apply?
I'm learning how to deal with Aaron’s sensory issues, though I have to admit the over stimulation part is much easier for me to comprehend then the need to self stimulate. At least I’m learning how to help him in those areas. I know to avoid crowded noisy places when planning activities or to at the least have a plan for what to do when it’s all too much. That plan usually involves handing over the iPod. What a life saver!
Discipline has become a struggle. We'd gotten to the point that any type of discipline, even telling Aaron he had done something wrong, would lead directly to a melt down complete with negative self talk, self harming talk and behavior, screaming, running away, etc... Once we started Aaron on antidepressants I've seen a lot of that subside, but it's still there. At least now we start at a base line that's not depressed and anxious. I still can't imply that he has lied because that is grounds for an immediate melt down. Lying is the greatest of all evils!
I've started looking at other things lately. Aaron is constantly "sick." He’s always like being sick, or at least that has been my opinion. After literally years of complaints of stomach aches I took him to the doctor. They did a blood test and then assured me that it was his imagination or the anxiety. I’d believe it. He says needs glasses and can't hear well. He says he has headaches and regularly feels “hot” and is sure he has a fever. I don't know if I can believe Aaron or not when he claims to have these ailments. He has lots of ear infections which could be the cause of his occasional "hearing loss." The "stomach aches" still persist, though. He has frequent strep infections and has developed some skin problems that the doctor doesn't seem to want to do anything about despite the fact that Aaron’s had dry itchy red patches on his legs for more than a year now. I don't think the nosebleeds are a medical problem. I guess his nose is just sensitive.
To get to the point, another mom told me to get him tested for food allergies. She said to look at the individual issues as a whole. She said when I combine those things with the attention issues that medication has never helped that food could be the problem. She told me to go to a particular allergy clinic that refers to Autism and Aspergers in its advertising. That makes me feel that it’s a gimmick and is trying to play on peoples fears, but then I tend to be skeptical. I’ve decided I should go ahead and do it, just to be on the safe side. So here is what I’m wondering: Does it matter where I get allergy testing done? If he has allergies, can I afford a special diet? Is this whole allergy thing a crazy hippy idea that I’ll be throwing my time, energy, and money away on or is it scientifically supported? Should I get my NT kids tested, too?
I guess I’m off to the internet to attempt to discern credible sources from bogus, BS. Wish me luck.
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This Saturday was the Georgia Walk for Autism and boy was it amazing. Just 6 weeks ago was told by another mom that she was doing the Walk for Autism and was looking for donations. After a bit of thought I decided to give it a try. As busy as we've been all I did was e-mail family and friends and have them forward the e-mails along to others. I hoped to collect $200, maybe $250, but the automatic goal was $500! $500? There was no way I could raise $500. By the walk we had raised over $500. Aaron was so proud. His eyes would grow big as I updated him on the totals. For him it might as well have been $5000.
The best part came at the walk. We were surrounded by children and families with Autism. Just glancing around you could identify many of the children effected by their behaviors or even their blank stairs despite the color, wonder and excitement around them. Aaron was normal.
What did Aaron enjoy best? There were many games with little prizes; whistles, pencils, and best of all, stress balls! There is nothing better than little trinkets except for maybe the bubble machine. It spat out huge bubbles with smaller bubbles inside. This machine was surrounded by boys who watched as the bubble grew out of the turning plastic rings and then flapped, squealed, or grinned with excitement as the bubbles popped on their fingers. What a site to see! It made me long for simple pleasures like that, though maybe seeing my child so happy is pleasure enough for a life time.
I noticed other interesting trends this weekend. Aaron was not the only boy carrying a stuffed animal. I was in fact, surprised at how many boys his age and older had some little treasured friend clasped tightly in their hands. The past few weeks we have been carrying Mittens, a beany baby cat he received from his therapist. Mittens has certainly not taken Croaky's place in Aaron's heart, Aaron is just making sure all is fair and that Mittens has a chance to see the world. While Aaron is gone Croaky is spending time with his other friends or napping.
The other thing I noticed was how some people look at kids on the spectrum. I was standing with my NT daughter listening to a man giving me his sales pitch about special life insurance & estate planning for families with children with special needs. He kept looking down at Anne with very sad eyes. He referred to how I must have my hands full--which i really do with her, but only because she's the only girl and the baby of the family--and how we could use the extra help. I kinda got offended. Why is he sad? Aaron makes me happy and I do my best to make him happy. Sure, it can be a struggle at times, but like I said, it's a struggle with my NT kids, too! Don't look at my child like he's different or broken. I love him like he is. He has no right to be sad. I don't know why it bothered me so much. I guess part of it is that unless I invite you to share my pain, you can't have it.
It makes me wonder if I look at people that way. I don't think I do, but he may not have thought that either. If I find out that someone is very sick, has a birth defect, or is struggling in some other way do I pity them? Gosh, I hope not.
Now, I have gotten way off topic. I guess all that is left to say is it was such a wonderful day despite the clouds, rain, and the incredibly loud music that seemed a bit ironic to me considering all the Autistic people in attendance. If you have not been to one of these events, you should go next year. It was truly amazing and has definitely made me want to seek out other opportunities to participate in the local Autism community.
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This weekend has been so amazing. First, Aaron was actually invited to a birthday party! When I called to RSVP the mom told me that she was so glad Aaron was coming and that there was a quiet room he could use at the location if he became overwhelmed!!! OMG!! I didn't even ask! Everyone else was out of town this weekend, so my younger daughter, Anne, was going to have to go to the party with us. My plan was to hang out in the lobby, parking lot, or at a nearby store so as not to impose an additional child on the party. I gave the birthday mom my cell phone number just in case, took a very deep breath and walked out the door. Two hours later the party was over and everything had gone perfectly. Today we have a Boy Scout den meeting. We're going to make a bat house, take a nature walk, and have a local college professor come talk to us about bats. Aaron is going to love this. He loves building with tools and the lecture on bats will be constantly interrupted by Aaron's questions and observations.
It seems that we never have perfect Aaron weekends, but this is definitely one. It makes me so happy when things work out well for him. It seems that so often they do not. In a few weeks we're going to have a Boy Scout tree climbing activity, which we will pay for and attend, but not participate in due to Aaron's fear of heights. A week or two after that we're having a 2 night camp out with the Boy Scouts. If only mommy could find a way to not participate! It'll be fun, but I prefer sleeping in a bed and taking a shower indoors. I guess I should be happy if this camp ground has a shower!
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