Wednesday, January 30, 2008

Heros and Burnt Bacon

I need to start this post with a great big THANK YOU to the Swan family. The boys were invited to a birthday party (their first) on Sunday and they had a great time. Spencer was a trooper and did what was expected of him, and Taylor was himself and did what interested him. The first thank you is for including the boys. Many people are afraid to invite children with autism to activities because there really is no way of predicting how they will act.
My second thank you is to Kevin (b-day boy's dad). Many times we are on our own when we are out with the boys. People stare and look at us as if we have 2 heads and do not know how to raise children. It is a great relief to be a part of a church that steps up and wants to help. On Sunday Taylor enjoyed himself very much. I know this because he was screaming when it was time to leave.
Now, my boys are not small. They were both over 50lbs at the age of 5. (they are also tall)
When Taylor was screaming Kevin did not miss a beat. He walked onto the floor picked him up and carried, the flailing, Taylor to the place he was supposed to be. In some way that made me feel as if we are not alone in this battle. There is not a whole lot that others can do to help us along this road, but that was in my eyes one of the acts that Christ was talking about when he said
"Whatever you do for the least of these my brothers, you do it to me." Matthew 25:40
Kindness and understanding was shown to my boys on Sunday and for that I say "thanks".
A few years after the boys were born and we had added our fourth child to the circus that is our lives, someone asked me how I did it. My sweet smiling answer was "I did what I needed to in order to survive." This included boxes of chicken nuggets, pizza rolls, boxed mac and cheese, corn dogs and anything else that I could cook and get on the table in less than 10 minutes.

I was a great cook when we got married. I would wow Darrin day after day with my new creations. I am not a creative person, except when it comes to the kitchen. I used to be able to recreate, with some accuracy, the meal that I would have out at a restaurant. Those days became few and far between once the twins arrived and had not resurfaced until a few months ago when I was forced back into the kitchen by necessity.

I do have to say that, to some extent, I am enjoying trying new things. Many fail. I do not have the luxury of any starches. These include noodles, potatoes, wheat products, oat products or rice products. No cornstarch or other thickening agents are allowed on this diet. To top it off I am faced with the challenge of cooking without dairy products. (This will not be forever. In fact I have started to reintroduce this into the diet starting with butter.) This was fine. I have coconut milk which is a great substitute for milk. No cheese for a few months was doable. This was until we got the IgG Allergy reports back from the doctor. I am now faced with cooking with out eggs. OK people I did without all the other things, but eggs?!!!

What do you use for an egg substitute? Let me tell you...ground flax seed mixed with water - does not work in muffins unless you like craters. :) Mashed bananas or other fruits...many of these we can not use because of Addi's sensitivity to phenols. Egg replacement - made with potato and tapioca starch - not an option.

So tonight I tried to make pancakes with limited egg use and almond flour. I used some egg whites that I got at the store and applesauce. Let me tell you, I don't know if you could call what I made tonight pancakes. The kids ate them, for that I am happy.

I celebrated when I found this great easy product, that they could eat, at Costco.... precooked bacon. Hallelujah, something easy....Addi can't have pork! Go figure. I have hardly ever given them pork products, but it was on her "list."

Tonight, instead of easy bacon, I attempted turkey bacon. Now, I like turkey bacon as long as it is not burnt. :) Yes, you guessed it, I burnt it. Tonight was not the most appetizing meal I have made, but the kids ate it up. Kind of makes you feel sorry for them. They were pretty desperate.

So I will keep trudging on and trying to get my chef legs back under me. I just might come up with some pretty good stuff. If I do I will post it here so you all can join us in our very very low carb diet.

Until then, I challenge even the most skilled chef to make dinner with 3 little ones around your legs yelling "I want bacon, I want bacon" and another roller skating into your legs about every 5 seconds while the house fills with smoke, and not burn the bacon.

Sunday, January 27, 2008

A Weekend of Revelation

For the first time in about a year, Darrin and I got away, alone, this weekend. It was a time to sleep, reconnect, eat carbs and reflect on our past year. Right now Darrin is my reassurance that all will be fine. I don't feel this way right now. I want everything to be normal yesterday.

Taylor was having a hard time on Friday. His attitude was fine, but he was moaning about his tummy. He tried to tell me what was wrong, but could not get the words out. I gathered him up in my arms, wrapped him in a warm blanket, and rocked him back and forth while holding him tight. It was at this time that I was hit with the full impact that I have kids with special needs. Don't get me wrong, I knew my boys were behind and had some catching up to do, but this was different. I saw at that moment how different they are.

I really don't know how to put into words the feeling that I had in those brief minutes. All I can say is that I now accept that my boys will be what they will be. God has know what they will be since the beginning of time. Apparently there is a reason for this Autism. This syndrome will play a part in the completion of the call of God in their lives. This is a necessary piece of the puzzle. They may never come to full recovery. That is OK. I am finally accepting that the boys will never be "normal". They will always have Autism and have to deal with its effects on their bodies. I don't know what kind of lives they will lead. I don't know what kind of work they will do. I do know that it will be fabulous and beyond anything I could have thought. For some reason they have been chosen to walk this road.

So many time I have read about parents who would make statements like "Autism has added so much to my child. I don't know who my child would be without it. It is such a joy to raise her." I would want to shout and yell, "Bull, get real lady." I do have to say, I am beginning to see what they mean. I am not to the "let's get up and shout for joy, my kid has Autism." stage. I don't know that I will ever be there. But, I do know that the more I understand this syndrome the more I understand what a privilege it is to have this glimpse into the world where these individuals live. Sometimes I wonder if we are not the ones that have the disabilities. I wonder if those with Autism have a better understanding about acceptance, because they are not hindered by "social graces" and wondering about what others think.

I know there will be days of doubt ahead, but for the first time in a very long time I am not panicking about the boys treatment. There is only so much I can do. I will do what I can, but the rest in in the hand of God. For tonight I will rest in the peace that the God who holds the universe in the palm of His hand, has a very special plan for my little boys and He will bring it to pass.

Isaiah 55:9 - 13
For my thoughts [are] not your thoughts, neither [are] your ways my ways, saith the LORD.

For [as] the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts than your thoughts.

For as the rain cometh down, and the snow from heaven, and returneth not thither, but watereth the earth, and maketh it bring forth and bud, that it may give seed to the sower, and bread to the eater:

So shall my word be that goeth forth out of my mouth: it shall not return unto me void, but it shall accomplish that which I please, and it shall prosper [in the thing] whereto I sent it.

For ye shall go out with joy, and be led forth with peace: the mountains and the hills shall break forth before you into singing, and all the trees of the field shall clap [their] hands.

Instead of the thorn shall come up the fir tree, and instead of the brier shall come up the myrtle tree: and it shall be to the LORD for a name, for an everlasting sign [that] shall not be cut off.

Thursday, January 24, 2008

The Road Before Us

Many of my friends have stated that when we have reached the end of this leg of our journey that I should write a book. I am not a writer, but I thought that it might be good to document our progress for my sanity.
We are embarking on this road using the biomedical method to treat our children. I have learned through our research that each child with Autism has a different treatment. This is one reason that Autism is such a mystery. There is not just one cause and the treatments depend on the manifestation of the syndrome. This makes each child's treatment a bit different. Also each child's body will respond differently to each treatment. What works with one for one symptom will not work for another with the same symptom. We have 3 we are treating.
Our Family is on the Specific Carbohydrate Diet. This consists of Meats, veggies, fruits and some dairy. I will get into the science behind the diet in a different post. I will also be posting recipes on this blog. I get very board with the same foods day after day (it is a good thing my kids like the same things. Makes it easy for me.) I am consistently trying to come up with different ways to fix our standard ingredients.
I will also voice our triumphs and roadblocks here. I am sure there will also be a few posts that have a bit of frustration. This is not an easy journey. It is not a fast journey. But I am sure that at the end of this segment I will look back on all that has been accomplished do as the lame man did when he was healed by Peter and John "he went jumping and leaping and Praising God."
It is My Father God who has called us to this road. He has gone before us. We will follow his direction and see where it takes us.