~seizure FREE me~

~seizure FREE me~

Thursday, July 28, 2011

Pinata, pinata, pinata...

We went to a family birthday party last weekend. I was told ahead of time that there was going to be a pinata, and his auntie said that she would buy Atty some special little toys to make up for the candy he can't have. Which was very sweet... I am thankful to have such supporting family members through this whole thing. The only problem left was how to deal with the pinata it's self. Should we take Atty somewhere else during that part? Should he just stand and watch? Should he participate and then give the candy to auntie for a trade? Everything else I had covered, I made him his special cupcakes for cake time, and I made him his type of bread and crackers, I packed his bag full of his type of food. But I just wasn't sure what to do at pinata time... I don't want him to feel left out, the magic diet already draws attention to him and has the potential to make him feel like he's on the outside of the group. So in the end I decided that if he wanted to participate he could. It's so hard to know what the best choice is. Last year {same kids party} my husband just distracted Atty, which was easier because he was littler. At yet another pinata party last year I just didn't call him over and there was so much going on he didn't seem to notice at first or care. I don't think he really understood. Plus there were toys in that pinata with the candy and he got some of those. This year everything seems a little harder in some ways. He's just so much more aware. I talked with him about the pinata. We went over what would happen and that he could choose to participate or not. That if he did participate he could collect the candy if he wanted to and then trade it with his auntie for special toys. He let it be know that he wanted to and that he understood. I also made him his freezer candies so that he would have his own treats as well. He was pretty excited about that. Pinata time rolled around and a pit grew in my stomach. Did I make the right choice? Would this blow up in my face, would he clutch the candy screaming and crying at the top of his lungs in front of everyone? I called him over like I said I would and he stood by my side, in the end he said he didn't want to swing at the pinata and clung to my side instead. When the pinata finally broke open, everything got pretty loud and scattered as kids scrambled for falling candy... and that is when Atty fell apart. A cry from deep down inside burst forth and he was lost. It was such a heart broken cry. He was completely overwhelmed. I quickly picked him up and walked away. We found a quiet corner to hid. I will admit I also became completely overwhelmed by his sadness and tears started streaming down my face, I had to swallow hard against the sobbing that threatened to escape. I feel so frustrated and helpless some times by all of this. Not that I really want any of my kids to have candy. I wasn't upset about the candy in particular, I don't feel like any of my kids really needs to eat candy. It was just that he couldn't do what everyone else was doing, it's not a choice, he simply can't. I just don't want one to feel left out while the other ones have fun. I also don't want to make all my kids feel like the odd ones out, sitting on the sidelines watching all the fun. I sat with Atty while we calmed down and then we talked about it a little. I think it just all hit him at once and became all too real for him before he had a chance to process it. One minute the kids were taking turns swinging and the next candy was everywhere and the kids were going crazy picking it up. Atty doesn't do well in commotion like that and then the added context of candy just threw it over the top. Anyways after we had calmed down and talked {I had hid my tears fairly well from Atty, didn't want to add to the situation or make him feel like I was feeling sorry of him. Feeling sorry for ourselves won't do us any good. It is what it is. Sad at times, but over all good. } I asked him if he was ready for his treats. That brightened him right up. We went and got them and then he lead me back to the quiet spot to eat them. I really liked that he knew he needed more quiet time and found it on his own. He sure is growing up. All and all I'm not sure that I would have done it any different. Except that in retrospect I probably shouldn't have talked about so many times with him before hand. I felt like I wanted him well prepared, but I think it just made it a bigger deal for him, and I know by now that that doesn't actually work well with him. It works really well for one of his brothers, but it doesn't seem to work for him. Makes it into too big of a deal or something. He is sometimes very hard to figure out. I think I'm going to have to claim the pinata back for kids who can't have candy and get one for his birthday next year... and fill it full of toys. I've also decided from now on that when ever I know there is a pinata at a party I will get little toys and trinkets for all my children and then after the party any candy they bring home I will trade them the candy for the "special prize of toys and trinkets". Because I can't really have the candy sitting around the house anyways and they can't eat it in front of Atty. Plus they really liked Atty's toys and I have a feeling all in all they feel like they are the ones that ended up on the short end of the stick. Candy... who cares. Toys last longer and are way more awesome. :)

Friday, July 8, 2011

Rambling... is there anything else I do?

Wow I am really not doing as well as I wanted to with keeping this blog updated. I wanted to record the whole experience of healing Atty better then this!

Atty is still doing so well. Although I think this second year into the diet might be harder in some ways. It's been a long time since he's had a seizure {well over a year is a long time for an kid} and so it's a lot farther from his mind. We talk about it from time to time and I made a video that we watch on occasion, but time still fades the memory. Which is good, and bad. In the first year he really listened and seemed to understand the absolute importance of following the diet exactly. Now he asks more for things he can't have or seconds on foods that he is limited on. I think also the fact that I am slowly switching over to a diet similar to the GAPS diet makes this an adjustment period for us. Because I am giving him unlimited non-starchy vegetables now and more of certain fruit {always paired with a fat}. I think the fact that I am making these changes makes him wonder what else can change. He hasn't thrown any fits yet when I tell him no on a food request, but he has sulked and or refused to eat the food he was offered in exchange.

I mentioned that I am switching him over to a diet similar to the GAPS diet. A while ago someone suggested that I read Gut and Psychology Syndrome by Dr. Natasha Campbell-McBride. I think I've mentioned this before. It took me a while to get the book as it's fairly pricey, but wow am I glad I did. Absolutely valuable. I've actually already loaned it out to quite a few more people who couldn't afford to buy it themselves, and every one who has read it has been blown away. I think it's a great read for anyone personally. Anyways I really feel that this is the diet that is the exact match for Atty. The MAS diet has done wonders, but it's focus is not on healing the gut and the health of the gut is directly related to Atty's health issues in my opinion {and the opinion of many others, including the doctor who wrote the book}. The GAPS diet has been used to heal others with seizure disorders but it's not as well know as the Ketogenic diet or the MAS diet. Which mean it's hardly talked about at all. I think this is a real shame. I'm not totally switching Atty over right away, it's going to be a slow transition. The GAPS diet is not a whole lot different then the MAS diet. I think the main difference for us is in the MAS diet you count carbs where as in the GAPS diet you focus on certain types of foods and food that heal the gut and build good bacteria in the intestines. They both exclude a lot of the same foods. There are some foods on the GAPS diet I wouldn't introduce yet {possibly in another year or two} that being the types of dairy products that are allowed like home made yogurt, certain beans and grain {a select few} and also honey. That's why I say a diet similar to the GAPS diet. Atty for at least the next year will still not have any dairy, no grain of any kind, no dried beans/peas, and no other sweeteners except stevia. The diet is a little to complicated I think to go into in great detail here, but it basically works in stages, you slowly introduce different foods as the gut begins to heal. Some times after the gut has healed up some people can tolerate food they were not able to tolerate before with out having any of the symptoms they were suffering from coming back. I'm not sure what all Atty will eventually be able to eat but I don't think he will ever be able to eat with out some restrictions.

This whole experience, while it has been eye opening and so exciting seeing him get better, it has also been very wearing on me. I have been fighting this drag me down feeling more and more lately. I just feel like being super lazy. Me saying something like that is like me sharing a deep dark secret. I'm embarrassed. Seriously. I am anything but lazy, in fact my husband wishes I would mellow out sometimes. I take multitasking to a whole new level. I can hardly sit still for a minute {unless I have a really good book, but even then I read in spurts interrupted by wild cleaning}. I generally can't even sit still for a movie. I won't sit still for a movie if the room is a mess or there is laundry to fold. So me feeling lazy, and I mean really really don't want to clean or cook another thing lazy, is odd. It's very out of character. It has me worried. I have to talk myself into picking up lately, into cooking and cleaning. I find myself fantasizing about curling up in bed for days. Or getting in my van and just driving, anywhere far away, alone. Of course I won't do any thing like that but the fact that I am even thinking like this is bothering me. Some times I wish I could just be a lazy mom and let my house go and just relax for a bit. But I can't and I won't and so that is that. I keep on going. That's what I do. But right now I just have to say... I don't want to.

Just admitting this on here makes me not want to post it, but I started this blog to be real about what was really going on with Atty and the whole situation and I'm a big part of it so I guess I have to be real about that too right? Sigh. Me and my ridiculous perfectionism that I can never live up to, will I ever let it go? Okay I'm done asking questions that you totally don't have to answer.

Now back to my super busy crazy life that I can not escape from {and don't actually want too}.