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to market, to market May 17, 2010

Posted by caizooka in autism, autism parenting.
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A huge THANK YOU to the cashiers at Metropolitan Market who graciously helped me out the other day. I rarely take my kids to the market. I can’t focus when I’m trying to manage them, a shopping list, price comparisons, and also the ingredients of food to make sure that they’re absent of any gluten. So, I use my babysitting hours to grocery shop. I needed just a few items and thought, ‘oh, how bad could it be?’  Famous last words, right?  Oliver started spiraling and Emil followed suit. It was like a symphony of tears, screaming, and anger all in one. I got my credit card out, put my basket on the counter and told the cashier that my son is escalating into a tantrum and I need to get him out of the store. I think that she understood from my tone that I wasn’t joking and that this just wasn’t a normal tantrum. She took over, and told me that she’ll ring up my order and have someone bring it out to me. Whew! She totally got it. I really, really appreciated it. I think that the over-stimulus of the supermarket just really caught Oliver off guard and he couldn’t recover. Thankfully, the tantrum didn’t escalate into one that we couldn’t get out of entirely.

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What am I missing? March 9, 2010

Posted by caizooka in autism, autism parenting, gfcf.
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Just when I think that everything’s better, out of nowhere, there are plates hurled again at breakfast. Thank you, Peter, for catching that one before the carefully peeled potatoes made their way across the kitchen.

So, I’m revisiting the morning and wondering what went wrong along the way to spur this behavior. What were the signs? What could I have seen but didn’t?

Oliver came downstairs smiling and prancing, seemingly happy to see Emil and I. He ran to the sofa and did a headstand. This is what he usually does. The pressure on his head seems to be soothing to him. I was making breakfast, Emil was playing with playdoh. Oliver was chirpy and grinning. I gave Emil some potatoes. He was eating them happily, minding his own business. I asked Oliver if he wanted some potatoes, too. He yelled, ‘I hate potatoes’. I ignored him. I then asked him if he might like some ketchup on them. He yelled, ‘I hate ketchup and potatoes’. I didn’t react and decided to switch from the topic of food to drink. Somewhere during this time frame, he asked if he could watch tv. I said, ‘maybe later’. I think that just added fuel to the fire.

Then Julian came downstairs and gave him a hug and said ‘good morning’. He didn’t revolt against that. Peter came downstairs and asked him if he’d like to join us at the table. He sat down but then stated that he wanted the potatoes peeled. He said, ‘sure, no problem’ and peeled his potatoes. Sometimes Oliver needs to get his way a little bit but then he’ll get on board with the plan after you give him a little control. Today that just further enraged him. I made some eggs for the other two boys with butter. Oliver never likes eggs, so I figured that it would be okay to cook them with butter for the other boys (Oliver’s not eating dairy/gluten). Then, he says that he wants eggs. I put a piece on his plate. He then started freaking out that he wanted a bigger piece before he even had any. Then we had a full fledged tantrum starting. Plates being flipped over, etc. Peter took him upstairs.

A couple hours later…he won’t eat more than two bites of food. He wanted a waffle. I made one. With chocolate chips and maple syrup. He ate two bites. Then he saw the left overs from breakfast and wanted the potatoes again, with no skin. Okay. Done. He ate two bites. He said he’s not hungry. My mom said to make him a milkshake. Good idea. Made him one (dairy/gluten free of course) with a banana in it. He drank about 1/2 cup.

Is it the gluten-free thing? Has he lost his appetite for food because of that? Is that causing him the tantrums? Is it that he was sick the past few days and he hasn’t eaten so he’s not hungry yet? Prior to this I was noticing how well he was doing. Fewer tantrums, better focus. More creativity and lots more laughter. He was bee-bopping around here last week in great spirits. He was also easier to talk into things and push the boundaries a bit. Now that he doesn’t seem to be feeling as well, he’s not at all flexible and is not easy to get along with. He simply cannot rebound well.

I wish that I had more answers for my questions. I feel like when we have a string of good days in a row I get closer to figuring this out. Then we’ll face a health set back and it seems like everything that we learned doesn’t work and the rules have been rewritten.

fall down 7 times, get up 8 January 28, 2010

Posted by caizooka in autism parenting.
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I’ve remained so positive and have weathered this storm pretty well. So I thought until yesterday. Yesterday was too much. For whatever reason, O is all of a sudden very difficult to be around. Every single thing becomes a large issue with him. We had such a nice run there of happy behavior and now this. My sweet as honey 4 1/2 year old has turned into an angry, violent, enraged tyrant. I remember now why J and I used to jokingly call him ‘Saddam Hussein Jr’. I can’t wait for this storm to pass. The OCD has overtaken him. Every single thing he has to have control of. His sandwich has to cut into the right shape. Then the sandwich that he demanded he suddenly doesn’t want. He pushes it away and starts screaming. He fixates on eating sugar filled fruit snacks. I tell him that he may have one after he eats some of his sandwich. He flips out. Tell me he hates me. Tells me he hates eating.

The day continued like this yesterday. Until this week he hadn’t had any real fits where he lost control of himself at his schools. Now he is starting to show them what he is made of. Good in that he feels that comfortable with them and they are more accurately to see what we are seeing and help us draw conclusions. Not good in that this has just gotten that much more difficult. We have great communication with his teachers at both of his schools and they have been wonderful in telling us what is working and what isn’t. Hopefully us talking will help fill in the gaps and we can better understand how to help him.

I see this in two parts…One is the ‘what is causing this behavior’. The other is ‘what to do about it when he gets like this’. Ugg. I think that we’re going to have to set up the ‘safe room’. I was hoping and praying that was just a phase and that he had outgrown that terribly destructive behavior. Unfortunately it is back with a vengeance and he is smarter and stronger. (have to make the reference to The Terminator here) By the end of the day yesterday, the I’m-doing-my-best-to-be-patient-with-you attitude was dwindling. When O threw his dinner plate at me was when I was officially done. I just started to cry. I told him that he made me very sad and has hurt my feelings. Of course, this seemed to add fuel to the fire and he hit E. He hit him a lot and I had to pry him off of him. He still wouldn’t stop hitting him. I slapped his hand. He was then enraged. I grabbed E and took him into the other room. O then went over and started to hit J. It was scary because there didn’t seem to be any stopping him (again…The Terminator). Eventually, he managed to calm down. Maybe because I ignored him. Who knows.

I’m trying to monitor my reactions to him to better decipher what reactions work and which ones don’t. I haven’t found one that works yet. Any ideas? I consider myself a resourceful person, but I have found my parenting box completely empty. Unfortunately when I get to that place with O, the other two boys get even less of me than they deserve.

Just watching him when he was so enraged was bewildering. I just don’t know how to guide him. I know that God gave me these 3 blessed souls to love, nurture, and guide through the world, but lately I am wondering if I am doing any of them justice. At one moment last night I had all 3 of them either crying, screaming, or yelling at me. Yep, that would be my low of the day. My high of the day was watching The Bachelor on my computer after the day was done. What a crazy show. Nice to get lost in that goofy world for 2 whole hours. Where the biggest problem seems to be who got the one on one date with Jake!

different reactions January 18, 2010

Posted by caizooka in autism parenting.
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Here is the article that I’ll be referring to:

8 year old boy taken to juvenile detention for tantrum

My mom sent me this article. The article itself is not as eventful as the comments. I am saddened to think that there are so many people think that you could judge this situation from this article. They are willing to send this mom to jail and throw away the key for bad parenting. There is no indication of why this boy was so upset.

Before our autism diagnosis, I probably would have said, ‘the parents might need to set more clear boundaries’. I for sure would have been more judgmental. After what we have endured in the past couple of years with O, my heart bleeds for this mom and child. You just don’t know what kind of trigger set off this reaction. So easy to dismiss this as a case of bad parenting. Kid just needs a spanking. So many comments like this in the article. Yes, perhaps it was a case of this. But, for a child to behave on such a level tells me that there is something else going on. We, as spectators, as their community, need not stand there and criticize as much as we need to try and understand. Not just tolerate, but learn how to be tolerable of and have empathy for. There seem to be several definitions of tolerance.

1. capacity to endure pain or hardship  2. sympathy for beliefs or practices differing from or conflicting with one’s own  3. the act of allowing something  4. the allowable deviation from a standard  5. the capacity of the body to endure a substance or a physiological insult especially with repeated use or exposure 6. relative capacity of an organism to grow or thrive when subjected to an unfavorable environmental factor

It’s interesting after reading the definition of tolerance, re-reading the article, and then re-reading the comments. It makes me think that we are not all on the same page here and more than that, some people aren’t even trying to be any definition of tolerant or compassionate. They are being downright, intentionally intolerant. They have ZERO tolerance.

Thinking back on our trip to the ER in the spring…we (my husband and I) could NOT get O to calm down. We now know that what we were dealing with was an autistic tantrum. At the time it was a screaming, crying, yelling, kicking, getting out of his car seat, trying to get out of the car, 3 year old who was having a 7 hour tantrum. It was scary. We were both so upset. Peter came home from work. Nothing worked so we took him to the ER because we figured there must be something that is medically compromising him to act like this. There was nothing. There were more of these tantrums to follow and I know that we will have more in the future. I only hope and pray that the type of individual that could be so quick to judge is not in my path when I’m trying to calm my son down. I might have to explain what tolerance really means to them.

I’m still working on my own definition of what tolerance is. Being a mom of multi-racial children and being raised bi-racial in a time when there weren’t that many of us gives me a different history and a different perspective on the matter. Being a mom of an autistic child even furthers my capacity of tolerance and trying to understand what tolerance means in a world where tolerance and intolerance seem not to be too different when you’re combatting something you’ve never thought that you’d combat, and are also looking for tolerance and some compassion in those around you. I know that many, many people endure many, many hardships. We ALL need to be more tolerant and less quick to judge, and more willing to ask, ‘are you okay?’ or ‘how can I help?’.

I go back to what my dad told me a lot growing up, ‘Don’t judge a person until you’ve walked a mile in their shoes’. Wise words.