Monday, November 10, 2008
Sunday, November 2, 2008
I will post pictures of the kitchen when it is done. What started out as new handles for the doors and drawers has turned into new stain color, a tile back splash and some other finishing touches. The kitchen has a much warmer feel now and is a bit more rustic.
I have also, with the help of my mom, gotten the laundry room all cleaned out and organized. We could not have done this project if the tools had not been organized.
I will let you all know when we have baby Connor in our arms.
I still need to post about the Fiesta. I will do this when I get the camera hooked up and pictures downloaded.
Monday, October 6, 2008
As I said I was going to write about this weekend, but something happened at dinner that is much more significant.
My greatest prayer for the boys and Addi is that they will come love God and serve his purposes for their lives. Spencer is one step closer. He is growing up and starting to understand some of the basic things that we do to thank God such as praying and thanking God for our food before we eat.
Tonight I fed the kids before Darrin got home and totally missed praying with them before they ate. When Darrin sat down to eat his dinner Spencer climbed up in the chair next to Darrin and the conversation went like this:
S (with folded hands): Pause, Pause
D: you want to pray?
D: o.k. go ahead.
S: I would like...
Humpty dumpty sat on the wall
Humpty dumpty had a great fall
All the kings horses and all the kings men
Could not put Humpty together again.
D: laughing so hard tears were running down his face.
I always love hearing what other little kids say. I waited for the day that fun things came out of my kids mouths. Tonight was well worth waiting for.
Tuesday, September 23, 2008
So much has happened over the past year and our family continues to grow and change. We have left one segment and are starting another. The kids are thriving and I am keeping up with the housework and laundry. Life is at a steady pace and will shortly be thrown into chaos again when Connor makes his appearance.
Our Fiesta on the 4th is to say thank you to all of you who have invested in us, prayed for us and encouraged us over the past few years. The journey has not been easy, but I would not trade the lessons I have learned for an easier road. I am trying to get invitations out to all of you, but please forgive my baby brain if I forget someone. Please come anyway. It will be at our house and we would love to thank all of you.
So consider all of yourselves invited. It will be a fun time and I am looking forward to hosting. It has been a long time.
Friday, August 29, 2008
I was a bit discouraged by the ATEC score because I had seen improvement, but after last night I am not relying on the score so much anymore. We still need to use it because it does give us some guidelines to see how the treatment is working.
Last night Darrin and I got to talk one on one with our new companions on this journey. Spencer's teacher Mrs. Barber and Taylor's Teachers Mrs. Kennedy and Mrs. Spence. They are all very wonderful. The reports that we got about both boys were fabulous! Spencer is thriving in Kindergarten. He is socializing with the other children and is keeping up with them academically. He still has some problems in the cognitive area, but Mrs. Barber told us that with a bit of prodding he does ok.
We met with Mrs. Kennedy next. She is Taylor's Life Skills teacher. (special ed) She told us that Taylor was a little charmer and she enjoys him very much. She is teaching him how to read and they are doing math. They are also doing a special program to help his cognitive abilities. I am very impressed with the progress that I am seeing. He goes over to Mrs. Spence's class (mainstream kindergarten) with an aid for about 1/2 an hour a day. They will work him into more time as he improves.
One thing that is super cool is that the way that Mrs. Barber and Mrs. Spence' classes are set up is there is no wall between them. After Taylor has done his centers his reward is to see Spencer.
All in all I sit here today once again in awe at the care that the Lord has bestowed upon our family. He has brought the perfect people along to help us along the next leg of this journey. I wanted the kids up at Fishback, but this is the perfect place for the boys for this year. They have teachers that care about them and are willing to work with us in order to help the boys reach their greatest potential.
Wednesday, August 20, 2008
I have hit my 3rd trimester. As of Friday I have 10 weeks to go. (12 if we are being truly realistic). Darrin and I have succeeded in getting the entertainment center cleared out and most of the DVDs and CDs locked up so that the mess is minimal. The book shelves are next.
I can not believe that it is mid August. Time is flying and there is still so much to do. We did take the kids to the State Fair last Friday night. A good time was had by all. I was totally exhausted when we got home. We also took the kids to the church outing on Saturday. This was the first time that we were able to sit like real parents and watch our kids from afar. It was a wonderful evening. We stayed till the end. This is the first time that we have ever done this.
I am still planning on having a celebration for all that has been given to us over the past year. The boys and Addi's recovery has gone much faster than anticipated and we want to thank all of our friends for the encouragement and support as we took this journey.
I am hoping to do this in the next few weeks. It should be a great time of celebration. I will post the details here in addition to sending or handing out invitations.
Hope all of you can make it.
Friday, August 1, 2008
We are going to have a slow day today. Family is coming over tonight. I am making them a cake today that is not on their diet. It is their birthday after all and an almond cake did not appeal to me. I got a glutton free chocolate cake mix at Meijer. It is the only thing that will have any type of refined sugar in it. Oh well, we will double up on their meds. :)
My computer is up and running again. I have been using Darrin's computer for the past 10 months. Darrin was able to recover all of my files except 3. He did an amazing job! Thanks Sweetie!!!!
So this is my first post on my wonderful computer. I am so happy to have it back!
I am going a bit off of the boys diet today. Not too far off the beaten path, I have already started them on corn.
For breakfast they had:
Fried Corn Mush
Fruit juice sweetened Strawberry Yogurt
For lunch I am trying my hand at
Macaroni and cheese with smoked sausage.
I am going to use a corn /quenoa pasta
for the cheese sauce I am going to use cream cheese as my base and add a bit of milk, Jack and Colby cheeses. I will let you know how it comes out.
Corn Spaghetti pasta with homemade sauce
Cake for dessert
It has been fun to cook things other than bacon, meat and veggies. We will see how the kids do with this food. I may incorporate more corn pasta into their everyday meals.
Here are the boys in the outfits sent by Aunt Mary for their birthday
They will be getting scooters tonight. We may regret it, we shall see. I will post some more pictures tomorrow. I am learning how to use my camera, so I will keep on trying to get some good pictures esp for Mary since we are missing her today.
Thursday, July 31, 2008
What did get accomplished.
Got a stroller for the new baby.
Got my massage!!!
Got a new recliner (I love Kittle's outlet!!)
Did not find the lounge pants at Old Navy. I will have to order them online.
Did not make it to the gym for a workout...oh well.
Kids went to parents night out.
Darrin and I got supplies for organizing the kids toys.
Got the toy closet cleaned out and organized.
Got the boys room cleaned out and organized.
Got the rest of the Salvation Army stuff taken to Salvation Army (about 2 van loads)
Got the linen closets stripped clean of linens not in use. Looks great!
Did grocery shopping and got the house back in order.
Family came over.
My Motherboard came, and then I found out that my hard drive is corrupt...brother.
(Darrin is working on getting most of the info off of it to put on my new hard drive)
Shredded bills and receipt that were sitting in a basket for years.
Threw a lot of paper away.
Shredded a year and a half of old bills and receipts.
Emptied and refilled the pool (it was pretty bad!)
Filed a box of stuff that has been waiting for years.
Finished organizing the office
Cleaned up the kitchen (took 2 and a half dishwasher loads)
Attended a closing
My mom did laundry for me (thank you Mom!!!!)
Cleaned up the paper mess (filed and shredded) that was on the end of the island.
Taking a breath and getting ready for the boys 6th birthday tomorrow.
I also need to do Darrin's and my laundry.
Fix the leak the kids put in their pool yesterday.
Spend time with the kids outside in their pool.
Happy Birthday Boys!!!
For next week:
Clean out Edy's room.
Prepare for the start of school.
Clean out the front coat closet.
Clean out our room.
Get a Fly Lady schedule put together.
Go through the books.
Dejunk the kitchen.
If you can not tell I am in a "get rid of it" mood. I am tired of having to clean up everyone's junk. We kept what was the "favorite" and got rid of the rest. With the new baby coming here in about 3 months something needed to change in order for our lives to stay in order when he arrived. Part of that process is learning to live with less. It was so easy to keep things up in Florida. We did not have much. So we are taking that concept and using it at home.
I will let you all know what kind of progress is made in the next week.
Thursday, July 24, 2008
After a day of screaming and some over the top behavior due to wheat intake, I decided to take the day.
I need to clear my head and get recharged to finish this last stage of the kids treatment.
So tomorrow I am going to :
Get a stroller for the new baby.
Get a massage with the remaining amount on my gift card.
Drop a van load of junk off at Salvation Army.
Go grocery shopping - We are out of food
Eat a late lunch with Darrin (I am hoping that he can take a short day tomorrow and we can spend some uninterrupted time together.)
Go to Kittle's Outlet Store and look for a recliner.
Get home, get the kids take Esther home and get to the gym.
Leave the kids at the gym for Parents night out. (Pike YMCA. Free for members, $5 per family for non-members. Goes from 6-8 pm)
Go home during Parents Night Out and sort through toys w/o prying eyes and make another run to Salvation Army.
I also plan to throw some shopping in between. I want to get some lounge pants for the hospital and a cute shirt.
The kids start school in a few weeks and I will have some quiet time in the morning with just Edy. We will be starting her second grade year so that we can get into a pattern before the baby gets here.
I also have a fiesta to plan and host before school starts. I am looking forward to this and will do some of that planning tomorrow also.
I hope to post some pictures soon of the kids on the beach. The only problem is that I am in most of them and do not want my beautiful round figure posted. Maybe I can photoshop.
Wednesday, July 2, 2008
This was the perfect end to a wonderful evening. I see so much of Taylor in this little boy and it gives me such hope for his future!
As I watched the mom watch her little boy sing, my heart rejoiced for her. I wait for a moment like this for my Boys.
Tuesday, June 24, 2008
Everyday they get up and go to a classroom full of preschoolers with special needs. It is hard enough (as most of us know) to deal with a normal preschooler. I can not imagine dealing with a room full of preschoolers and then add to that special needs. Wow!
Today I feel as if I have lost some very valuable companions on this journey. Each one of these teachers and aids have written on the slate of my children's lives. Because of that influence they have affected the lives of everyone the boys touch. I don't think that they will ever understand the eternal impact that they made.
I do not know who will step in and take their place. I know they can never be replaced, but the Lord has others who will step in and join us in this journey.
In all human affairs there are efforts, and there are results, and the strength of the effort is in the measure of the result. -- James Lane Allen
The develomental preschool staff at Fishback Creek Public Acadamy gave great effort in helping us with the boys recovery. The result of that effort will not be able to be measured for years to come. I think that when we finally reach the end of this journey we will be able to look back and see the different layers that were laid down. Theirs was the first.
Thursday, June 12, 2008
I have been pondering a few things over the past few days. There have been many blogs and posts in forums that I have read that have talked about how inferior some moms feel when they look around themselves at others. I think that this is one of the greatest things that keeps women from developing very close bonds with other women. We consistently compare ourselves to each other.
Most of the time when someone encourages me in the work that we are doing with the boys or they call me their hero, I am quick to dismiss it in my mind with a personal dialogue that says "ya, If you were in our home for more than a few hours and really got a good look at a real day you would not think this."
I yell at my kids, am not as diligent as I should be about things that need to be done, should play with the kids more than I do and so the list could go on and on and on.
I do compare myself with other moms. Moms that I think have it all together. I also know that if these moms knew this they would laugh, because they to compare themselves with other moms and feel the same as I do.
We as moms do the best that we can on any given day. We make sacrifices that only other moms can understand. So today I am making a new resolution. Instead of comparing myself to these moms, I am going to enjoy their strengths and thank the Lord that we are all different and can compliment each other so well. We can learn from each other and encourage each other instead of beating ourselves up over not being all that we think we should be.
Here is a list of many of the moms that I hang with and what I appreciate about them. (even if they feel themselves less than super I think the are all wonderful)
Amy Koons: She is one of the best writers I know. I love to read her blog, because I know it will be a good read and I will feel uplifted when I am done. I think she could write about an earth worm and I would think it was great.
Alaina Fulk: I love to hear about her menus and the entertaining that she is doing. She is one of the most hospitable people I know.
Monica Bird: One of the dearest friends I have. She is raising 7 children and homeschooling and yet she still has time to listen and encourage me. She has a mind that wants to learn and she has not neglected it just because she is a mom. She can also feed her brood on an amazing budget.
Heather LeFebvre: One of the most creative people I know. She is constantly sewing cool things and creating really cool food in the kitchen. She has persevered through a very trying illness and has developed a true compassion for those in the same circumstances.
Ginny Enas: Is raising 10 children ages 19 - 2. I am amazed at her wisdom and continually seek her advice in the raising of my kids. She has shown me that I can still be me in the midst of marriage and motherhood.
Catherine Gillespie: Reads more books than I knew existed. She reads to her kids on a daily basis. She is learning how to do things on a tight budget and I am gleaning so much from her thoughts on that.
Rachelle Swan: She loves her stepchildren as though they were her own. I have not seen many women care about children they way she cares about her 2 oldest. She is in the midst of trials and she is facing them with determination and fighting for her kids.
Each of these women are truly super moms. They are unique and wonderful in so many ways. What is posted above is just a hint of who they are.
I guess what I am trying to say in this post is that so much of our energy is wasted on comparing ourselves to others instead of enjoying those differences.
So I am going to step out of my box and in spite of my really bad stained carpet have a party for Edy for her birthday. I know that I think so much worse of it than others do. I am not going to let stained carpet or shabby furniture stand in the way of entertaining those I hold dear or doing something for someone else because I don't know if they will like it. I have held back too much in the past few years because I did not want to be judged on the actions of my children or the condition of my house. I am determined to accept things as they are and move on.
So when you read this post if you feel inclined to leave a comment, I want to know what your favorite thing about yourself is. Is is time for us moms to start dwelling on the good that we have and quit getting down on ourselves for those things that we wish we were.
Edit: Darrin got on me for not posting my favorite thing about me: I am glad that I am so flexible. I like to be spontaneous. I think the most fun to be had is just doing something without forethought. (this has gotten me into trouble, but I have always had a good time.)
I think you are all wonderful and no one else could fill your place on earth!
Friday, June 6, 2008
In fact it has one little extra part that many of us don't have. It is a BOY!!! We are quite positive of this. He is a typical boy and was strutting his stuff.
Now for the hard part. We need a boy's name. We have the middle name. It is Louis after Darrin's papa that passed away this year.
I am very open for suggestions. Our guidelines.
The name has to be 2 syllables.
It can not start with A, D, E, J, S or T. (we already have those initials.)
It needs to end in an "or" or "er" so that it ends the same as Spencer and Taylor.
Let me have them. I will present them to Darrin and when we decide on a name I will let you all know.
Today has been a good day and I am thanking the Lord for a healthy child.
Wednesday, June 4, 2008
Our whole family minus Darrin has been sick this past month. The last 2 weeks have been the worst with it ending this past weekend knee deep (not literally) in puke! For some reason I have not felt motivated to sit and update. :)
We have had some great times this month. As I get around the fact that I am exhausted all the time, I am trying to get out and do some things with the kids. A few weeks ago I took them bowling. My mom was sweet enough to go with me and help. I have to say it was not a total disaster. We did not get through even one game, but the kids have been asking to go again so it was worth the effort. We can bowl for free with only having to pay for shoe rental. For those interested go to kidsbowlfree.com
A few weekends later we went camping for Memorial Day weekend. It was the best camping trip we have ever had. As much of a pain as it was to take the kids when they were younger, I am starting to see the fruits of our labor. They are wanting to help set up and take down the camper. I figure that they should be able to set up the whole thing properly by the time they are 7, 8 and 9. I think I will give the baby a break and not make him/her help until he/she is about 2. :)
I have pictures of both, but they are on different cameras. As soon as I can get a hold of my mom and Amy's camera I will post pictures.
Taylor had his 3 month check with Dr. Hulesman last Thursday. His ATEC jumped from 48 to 36. We are making progress. It has been hard to get a handle on all of the things he is supposed to be taking, but I finally feel as if I am on the verge of getting on top of it. In the next few weeks we will be starting chelation. This is a big step. It is our next to last step if not the last. If it works we will be done and just continue what we are doing for the next year or so. If we don't get the total result that we want we will do some Hyperbaric Chamber treatments with him. We will cross that bridge when we get to it.
All in all it has become a lot more normal around here than I ever dreamed. Taylor has turned a corner. I am not sure what caused it, but am very thankful for it. Addi has quit the spontanious screaming and we are working on the whining. I am hopeful that by the time this baby arrives that most of everything will be cleared up.
I am aslo very thankful that we have had such a quick recovery rate. There are many families that do not start chelation for years. The Lord has been gracious and we are flying through the steps. You could not have convinced me a year ago that we would be where we are today. I read countless stories of other families and my heart aches for them. Our road has been simple and easy compared to what they have had to deal with.
It takes time to succeed because success is merely the natural reward of taking time to do anything well -- Joseph Ross
Monday, May 5, 2008
Addi is growing and I can not get enough food down her to keep her satisfied. I feel for her. I just want to pitch it all and go back to the GFCF diet. It was sooooo much easier!
I had to go to the store this morning because we were out of our staples. I was determined to get something for Addi that she would like. I was going to get salami. I did not care what was in it. She needed some variety. I picked up the "best" out of the lot and proceeded to the bacon section. As I was on my way I passed the new Hormel Naturals. Guess what...they have an uncured salami!
So today in the grocery, once again, God took my hand and showed me that he is going before me to provide for these children. I was at the end of my rope and he pulled me back up.
Salami is such a small thing, but today it made my day. (and Addi's. She loved it. Ate most of the package.)
Friday, April 11, 2008
Spring is just about to come full force to us here in Indy. It has been teasing us for the past few weeks, but I think it is about to stay. Spring is my favorite season. It is full of renewed life, fresh smells and sunshine. It has been my favorite since childhood. I remember when I was in school as a child, walking out of the school building and taking a deep breath of spring air. Nothing else smelled like it. For me spring means new beginnings.
We have reintroduced eggs into the kids diet. Eggs are marvelous things. I can now make great muffins, pizza crust, cookies and a multitude of other baked goods. I am sure that the kids will enjoy eating them as much as I enjoy making them. I have also introduced more dairy. Cheese is also a marvelous thing. It helps keep crackers together and gives a quick no-thought snack.
When we started this diet 3 months ago it seemed an eternity before we could reintroduce these things, but as spring came so did the wonderful change in diet. It is so much easier now.
We started Taylor on a med called Risperdol last week. I don't know what changes I am supposed to be looking for. It is supposed to increase his appetite as a side effect. This has happened. He asked for chicken nuggets on Sunday night. I was more than willing to do this for him. He ate them for dinner and for lunch the next day.
In addition to taking his vitamins I was able to sneak Zinc, TMG, Folinic Acid, Vitamin C, Cortrex, MSM and Magnesium into their muffins. They ate them! I don't know what the heat did to these supplements, but some is better than none.
Again, I love spring and can not wait for the time that the kids can go outside and play on a consistent basis. They are always much happier after they get a good dose of Vitamin D and so is mommy!
Friday, April 4, 2008
Today Taylor took his vitamins!!!! I am so excited. I gave him the little "berries" and walked away. I tried to peak around the fridge to see if he had eaten them, but he had his back to me. Later he asked for some more. I gave them to him and saw him chew them up!! This is almost as much cause for celebration as Spencer's potty training.
These past weeks have been my most tired throughout the boys treatment. I just want to chuck everything and go to sleep. Isn't that the way God works. When we are at our lowest He is able to do what needs to be done. Things needed to be done and He got them done. I can humbly say that it was not me by any means. He has shown me that this journey is not on my shoulders, but on His. He will bring us to the end with the result that He has set from the beginning of time.
Vitamins are such little things. You can fit many of them in your hand and yet there are many valleys between the ridges of those little things. Today God took Taylor to the vitamin mountain and helped him conquer it. He did not even need the help of his mama.
Thursday, April 3, 2008
Addi and Spencer had their 3 month check with Dr. Hulsman yesterday. Spencer had an ATEC in the 40s during our last visit. This visit it was 24. His "social score" was a 1 and Dr. Hulsman told me that he was almost off of the spectrum. Music to my ears. He will be starting chelation this next week. We are going to go nice and slow. It may take us awhile, but this will help his communication and brain fog.
Addi's ATEC was in the 60s when we started and she was 44 yesterday. We are still having problems with her screaming. We are trying some adrenal support. I think this has already helped her. We had not started her supplements for this, but she found the bottle and emptied it on the floor upstairs. Most of the capsules were opened. If that is all it takes to get them to take their supplements then I should just give them a spoon and let them play with all of them. The screaming is down today and she slept in her own bed all night last night.
We also got a new vitamin supplement. Everyone but Taylor likes the new vitamin. I am learning that he does not like the orange flavor. It is berry all the way for him. I am looking for a gummy vitamin for him that does not contain corn syrup, so if there are any suggestions please let me know.
Over all we were very pleased with the visit. She also gave us a prescription for a drug for Taylor. We are hoping that it will give him a sense of calmness making it easier for us to get the supplements down him. We will see what happens.
I have always had a heart for missionaries. I would have gone in an instant if I had been called, but I wasn't. Since I was not called I wanted to have a home that could house missionaries when they were home on leave. This grew into a dream to have a place that they could bring their families for a time of R&R. God has taken my vision and tweaked it a bit. I still want to have a place where people can come for R&R, but God has changed my focus group.
Because of the boys and their Autism, God has put a very special place in my heart for the parents of special needs children. I do not necessarily have a heart for the children themselves. I do love them, but my concern is for their parents. The divorce rate for families with special needs children is higher than the national average. The stresses and heartache that these parents experience are much more than the stresses of normal life.
Yesterday on Dr. Phil there was a couple whose son was born without the division between the frontal lobes in his brain. Most of the time these children die in the womb or shortly after birth. The fact that this child has lived this long is a miracle. They love day by day not knowing how much longer their son will be with them. The dad has turned to alcohol for escape. The mom takes out the brunt of her frustration on the dad which drives him to drink even more. It is a vicious cycle.
What I saw was a couple who was hurting and needed a break. They needed time to reconnect and time to take a break together. They needed encouragement that their feelings are natural and all parents have them. (even those without special needs kids). They needed a place to vent and they needed a place to have someone wrap them in the love of Christ. They needed to know that no matter what happened that there would be people out there that still loved them and would be there when they felt like they could not go on.
This is the kind of place that I want to have. I want to pamper the moms and give the dads time to pursue some of the things that they have had to put on hold. I want to give them a time where they can get some help for their relationship. I want them to be able to go out on a date together. I want to provide some respite care for the children by people who are trained in handling their particular situation so that the parents can relax and know that their children are well cared for.
I think that this is the greatest thing that we can do for these children. It will give them peace in the home and take the stresses off of them. Stress is one of the worst thing for special needs children so if we can help their parents we can help them.
It is only in "dream" stage right now. I don't know how God is going to bring it about, but it will be exciting to be part of it.
Friday, March 28, 2008
Tuesday, March 18, 2008
I did not understand how Spencer could be ready for Kindergarten when his comprehension skills are not up to par. They told me he would be board with anything else. I did not understand what they meant until yesterday. I was doing some school exercises with Edy and Spencer wanted to "draw" too. We gave him a paper and I asked him to draw an A. He did it. We went through the whole alphabet and he wrote every letter. He even did some lower case letters. I also learned that his comprehension skills are not as behind as I thought. When we were done with the letters he turned his paper over and proceeded to write YOU. He then pointed to the word and said "you". Wanting to set a positive air to the session I suggested that he write the word WIN next. I told him the letters and he wrote them. I then said "you win". He said "NO" in the way that says mom you are not so smart and then proceeded to write the letters L O S and E. He then very emphatically said "YOU LOSE!" Thank you Monkey Ball!
Taylor is also learning to spell, which amazes me. He likes the words ready, go, and goal. He also has learned how to spell his name. I know that there is much in his brain that is just itching to escape. One day I will sit in amazement that we made it through this part of the journey.
Darrin cracks me up. He brought me home a book to help me with my blog. It is "The Book of Positive Quotations" 2nd Edition. It really is a cool book and I want to start putting these quotes in my posts. The one that I feel is very appropriate for my situation this week is this:
"The one law that does not change is that everything changes, and the hardship I was bearing today was only a breath away from the pleasures I would have tomorrow, and those pleasures would be all the richer because of the memories of this I was enduring." - Louis L'Amour
I love watching little brains at work. When the boys were little I would love to watch them figure things out. I lost this for a time and now those little brains are working again. I get great pleasure watching them learn, knowing how hard it has been for them to get to this point. There were times in the past years that I felt that these days would never come. I would be living in this cycle forever. The cycle is ending. The kids and I have been having a very nice time together this break. We do have our little incidents, but they are nothing like the past. We played cards yesterday, colored and played together. We are verging on "normal" (not that I want to get too close to that). The pleasures of these times are all the richer because of the hardship that we have been through together.
Right now Edy is sitting in the big chair with Taylor. They are looking at pictures of Disneyland. Edy is asking "who's that" and Taylor is answering her and even giving descriptions of the pictures sometimes. He is getting most of them correct. How much has changed in the past year. I am looking forward to the rich pleasures of tomorrow.
Wednesday, March 5, 2008
As many of you know, Darrin and I had our kids very quickly. 4 children in 2.5 years. After Addi was born we called it quits. 2boys and 2 girls seemed like a good number and mix. Also, Addi's labor and delivery was very hard and I did not ever want to go through that again.
Edy has also been learning about God's timing in answering prayer. She has been praying for a baby for about a year now. She asked me a bit ago why God did not answer her prayer. I used the moment to explain to her that God sometimes says no and we need to be OK with that.
We arrived at Grandma's house about 5:30 on Saturday evening. The atmosphere was one of grief and depression. I found Grandma and gave her a long hug and then told her I had a card for her. She read the card and then looked at me. Her face turned from one of grief to one of joy. She then started showing the card to everyone. She would say so and so come here, read this. It will be her reason to continue through the very hard first few months without Papa.
The card read like this:
cover: A New Baby
Inside: How Wonderful!
I wrote inside:
I will be arriving sometime between October 31st and November 12th. Please come and visit me.
It was signed: Baby T
I have 2 boys with Autism and a little girl with learning disabilities. How I am supposed to get through this pregnancy, I don't know.
What I do know:
God has never given me enough to send me to the insane asylum. (I have come close)
God has taught Edy a very special lesson about answered prayer.
This child has already given someone in the midst of grief, hope for the future.
I did question the timing of this pregnancy. I have fears of miscarriage, birth defects, one more with autism, labor and delivery and postpartum depression . We are starting over. I am almost done with diapers and life was just about to get a bit easier when all of the kids were in school this next fall.
Even with this I have to acknowledge that God's timing is perfect.
The kids will all be in school in the morning just as I am starting my 3rd trimester. Can you say morning nap?
We were able to plan our Grandma's first holidays without Papa. Thanksgiving with us and Christmas with her daughter in CA.
Darrin started a really great job in January and will be going full time in May. We will hopefully have maternity insurance.
The boys are ready for chelation. They should be greatly improved by November. (I already see changes in Taylor. It is amazing what a few days away will reveal)
He gave Darrin and I time alone together to get used to the idea. I would have had a much harder time accepting this pregnancy in the midst of screaming children. :)
Once again God is teaching me that along the way there will be things and situations that I view as bumps in the road. Looking back from this side I can see that those "bumps" are an intricate part of God's plan for our family. Without them we would not be who we are.
It is the same with this. God is changing the dynamics of our family once again. It will be interesting to see what I think about this "bump" when I am on the other side.
BTW: Alaina, do you still have the crib? :)
Thursday, February 28, 2008
It is the first time that I had to tell Edy that someone she loved had gone to be in Heaven with Jesus. She cried as I expected, and I am sure there will be other tears from her at different times. I wish I could shield her from these hurts, but I know that God will comfort her heart.
We went down to Arkansas last March to see Papa LA and Grandma Bobbie. I am so glad that we did. He got to meet his great-grandchildren that he had heard so much about. He got to watch them play and swim, and Edy talked his ear off. After we had left for home the rest of the family from Texas and the East Coast converged there. A fun time was had by all.
I am told right before he passed into the arms of Christ, he was surrounded by his 2 oldest sons, his wife and his pastor. They read the 23rd Psalm and prayed. It was while they were all in prayer that he was ushered into the Kingdom of Heaven.
What shall I render to the LORD for all his bounty to me?
I will lift up the cup of salvation and call on the name of the LORD,
I will pay my vows to the LORD in the presence of all his people.
Precious in the sight of the LORD is the death of his saints.
O LORD, I am thy servant; I am thy servant, the son of thy handmaid. Thou hast loosed my bonds. I will offer to thee the sacrifice of thanksgiving and call on the name of the LORD.
I will pay my vows to the LORD in the presence of all his people, in the courts of the house of the LORD, in your midst, O Jerusalem. Praise the LORD!
I am tired of special diets.
I am tired of smeared poop in the bathroom.
I am tired of the screaming.
I am tired of being tired.
I am tired of my struggle with weight.
I am tired of the same food over and over.
I am too tired to think.
I am tired of trying to get supplements down my children.
I am tired of medical bills.
As I was writing this in my pity party state I received a phone call update on Darrin's Papa in Arkansas. He is not doing well. He was diagnosed with stage 4 melanoma about a month ago. Everyday is a struggle to know what to do to help him. My in-laws are there at this time. They do no know how long they will need to stay, but if things keep progressing the way they are, it will not be much longer.
At least there are things that I can do for my boys. They do not have a life threatening illness. What we are doing will make it so they will be able to lead full, normal lives. They will recover. There is not a whole lot of guess work left. We are on the path to recovery.
I can not imagine what Grandma Bobbie is going through right now. The realization that she is going to lose her husband and close friend of over 25 years is starting to close in on her. She has lived with this possibility looming over her head for years. Papa has Emphysema. He has been living with this for a very long time. As it turns out, his lungs are working fine right now. It is the rest of his body that is having trouble.
It is amazing to me how one phone call can put me back into perspective. The timing of the call was of the Lord. A gentle reminder to me that my life is not all that bad. Yes, I am tired, but our family in Arkansas is much more so. So today I will continue to give my kids their supplements and Epsom Salt baths, not care that the house is once again a mess, and pray for our family, in Arkansas, who is facing a much bigger battle today than I am.
Thursday, February 21, 2008
Wednesday, February 20, 2008
Because of all of the sickness (not as bad as other families have had it) my week is a bit off. I thought all of the doctors appointments were this week. NOT. They are next week.
Because I thought they were this week I filled out a new Autism Treatment Check List, called an ATEC, for Taylor. You can see what we progress we are looking for here:
The saying that you can not see the forest for the big tree that is right in front of you has been so true for me over the past month. I did not see the progress. I started to wonder if what we were doing was truly worth it. Well.... the ATEC score is on a scale from 0-100, 0 being the best and 100 being the worst. Taylor was in the mid 60's in November. Today when I did his ATEC........46!!!!
This is close to what Spencer was in January. So very exciting. Now it may go down a bit after Darrin goes over it and changes some answers. But he has made huge progress in just 3 months. We still have a ways to go, but we are going and that has made my day. We have covered a vast amount of the road. Wow 46!!
The tantrums are gone! He is seeking me out for hugs and play time. The other day he came up to me and said "let's play together." He wanted to do a puzzle. He is also starting to use 5 word sentences consistently and telling us what he wants instead of pointing or grunting. He is also using the scripting language that he has in an appropriate manner.
Last week Darrin caught him playing with a car on the car rug appropriately. He was pushing the car down one of the roads and following it as it curved.
As I said earlier, it is hard to see the progress day to day. This ATEC really helps us see by numbers what ground has been covered.
The day we hit the single digits we are going to have a huge party.
To top it all off I lost a pound this past week! It was a very stressful week and I still managed to lose a pound. Life is good today!
Monday, February 11, 2008
In order to get these pathways open we are doing a number of things. We started with Vitamin B12 shots. To this we are adding Epsom salt baths and zinc. This is in addition to the MSM (helps with allergies), digestive aids and other supplements.
I can not say that we've seen major dramatic results with the vitamin B12 shots, but with adding the Epsom salt baths I am starting to see some improvement. Taylor is much calmer than he has been in weeks. I give the 3 younger children a soak in their swimsuits when the boys get home from school. They were staying in the bath for about 1 hour, and now we are down to about half an hour each day. Yesterday Taylor referred to me as mommy for the first time. Most of the time he refers to me as mom. It was just an easier word for him to say. Today he used a 5 word sentence. "I want more bacon please."
We have not seen the dramatic result that others have seen with the allergy tests and removal of the foods that they should not be eating. Some things cleared up, but the communication did not improve. The communication is now emerging. It is slow, but it is there and that is exciting. We started our next supplement for detox this weekend, zinc. It is not easy to get it down the boys, but we are trying to be consistent in hopes that we "win" and they start taking it more willingly. (I wish all could be given in shot form. So much easier!!!)
After our next appointment we hope to be adding GSH. This is the compound that is in your liver that helps to detox. It is also the element that is eaten up by Tylenol. We will no longer be giving our children Tylenol. I knew that it was toxic, I just did not know how toxic it was to our boys.
Once we have gotten their detox system going strong we will start chelation. This should remove any mercury that is sitting in their bodies.
It is a step by step process, but I know we are on the right path. The diet is going well. I am learning to cook and you my friends give me different ideas all of the time that I can incorporate into the diet. Their bellies are getting flatter and attitudes are better.
Right now it is quiet here. The dishes are mostly done and the rest of the house is an absolute mess, but it is quiet and peaceful. That is more than I could hope for a few months ago.
Thursday, February 7, 2008
All this to say that I am so glad that I am walking on this journey with Darrin. He is a man destined for greatness and this journey is just adding to this greatness. He may not be recognized by the world as one of the great men of our time (I think so, but I have found that not everyone sees things the way I do) but he is a great dad. This is the man who had never changed a diaper before we had our first child. This is the man who gaged when he changed his first "rice" diaper. (you who have experienced this know what I mean) This is the man I love. He has always jumped in with both feet even when the waters were a bit scary.
The last 2 years have been very stressful. I am one who eats when stressed and the result has not been pretty. So, starting today I am going to lose 30lbs.
I had lost 30lbs after Addi was born, but those little buggers have been making their way back on to my body. It is time to shed them again.
I will be posting my results on a weekly basis. This is to keep me accountable. I also am going to be doing something that was mentioned on The Rachel Ray show today. I am going to get sponsors for my weight loss.
This is how it works. Each person who wants to can sponsor a certain pound. For example one woman's boss sponsored her 180th pound. He will buy her a new outfit when she reaches that goal. I do not need new outfits, but I am looking for bits of encouragement and accountability along the way. So if you are interested in sponsoring one of my pounds or goals let me know. Darrin has already said he will sign up.
I will be using my online weight watchers and I hope to make it to the gym everyday to do the eliptical for at least 30 min. Also the night snacking will stop. No more food after dinner.
With this in place and a bit of encouragement from my friends and family, I hope to be ready for our vacation to Florida in July.
Also, If any of you out there want to join me, I would love to sponsor one of your pounds.
Saturday, February 2, 2008
I have always enjoyed researching my purchases. It gives me great pleasure to find out the retail price and then either find one on sale and use a coupon for another 20% off or find it online for a fraction of the cost. So now I am looking for the biggest, baddest, grill out there for the lowest price. I will let you know what I find.
I plan on using this grill to cook my turkey bacon. :) (in addition to other things)
The other kitchen gadget (if you can call it that) I can not live without is my Kitchen Aid mixer. I make muffins in this at least 2 times a week. I am sure I will use it for other things as I get time to experiment with my baking.
I received my Kitchen Aid mixer as a birthday gift from my family. I know it is a bit weird, but I am one of those who likes to get things like vacuum cleaners as gifts. I am not big on getting flowers, I do like the chocolate, but bring me home a new kitchen gadget or something that will make my life a bit easier and I am one happy mama.
We are a video game family. We started out with a Play Station I. We had so much fun with it that we were going to get a Play Station ll, until we found out how expensive they were. We settled for a Game Cube knowing that we would buy a Wll when it came out. (We have one now, but still use the Game Cube.)
We have been collecting Game Cube games for some time now. I like this system because they have a lot of muti-player games. One of the kids favorites is Monkey Ball.
While we were away last weekend Darrin found a Monkey Ball game that we did not have. He said it would be better than the one we did have. We both thought the kids would like it better.
I must pause here and explain a bit about how an Autistic brain works. One thing that these kids lack is impulse control. The boys are getting better except when in a highly stressful situation. Let me tell you Monkey Ball is HIGHLY STRESSFUL!
We had the screaming down to almost nothing. That is except when Monkey Ball is being played. When mama is winning all is smiles, but as soon as that ball rolls off of the maze....you would have thought that they were being tortured back in the medieval times. Wow, what my neighbors must think.
So for much of this week I have had to endure the screaming as they roll one by one off of the maze. I would try to put a stop to it, but it would not work. They truly can not control their reaction. As their bodies heal this control will be developed. I do have glimpses of this from Spencer. He can handle a little of mama messing up. He will tell me "it's ok mom try again." He can do this for about 10 times and then he has had it with this woman's clumsy fingers.
I could just hide the game and not let them play until the impulse control has been developed. I am either a glutton for punishment or something. I can not bring myself to take this game away from them. As much as they scream when they fall off the maze I get an equal reaction of joy when they get to the goal. You would have thought they won the lottery. They are also getting better at their eye hand coordination. Every day they get through one more maze without falling off. I think that the rewards of what they are learning and developing out weigh the disappointments of falling off the maze.
Because they both are getting better at the game, I purchased 2 more Game Cube remotes last night. They boys and I sat on the floor and played Monkey Ball races. There was no screaming. Most everyone had a great time. Spencer gave up about half way through because he was not winning. Well, on to the next battle. :)
As I was writing this Spencer got very mad because he could not win at the Star Wars ship race. He was quite distraught and came up to me and said
S - I want to win
ME - Try again
S - No try again
Me - shall I tickle you?
Me- shall I raspberry you?
Me- shall I wrestle you?
Me- shall I love on you?
S- Love you!
He then gave me a big hug.
Wednesday, January 30, 2008
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
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
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.