Ahh....what a roller coast ride the last couple of weeks have been. I worked super hard to prepare for a vacation to the ocean 12.5 hours away from our home. When you are on the GAPS diet this means that you have to take every single item of food that your family will consume. There was a lot of cooking and planning involved.
Brandon stayed home due to having to work. I drove the 12.5 hours with my 2, year old, 4 year old, and 11 year old nephew. All in all the drive went well. Yes, there was some screaming and crying on the kids part but we did it and we did it together. I was nervous about driving that far by myself and now feel that I have another item to check off on my been there done that list.
Hayden loved the ocean. He was so happy playing in the sand and water. Ruby was not a big fan of the beach and fell asleep while I held her. It was such a peaceful moment on the beach holding my sweet daughter, watching my little boy play in the sand, and hearing the waves crash in. It was the highlight of our very short vacation.
We stayed with another family that graciously invited us on their vacation. Their son has autism as well and are utilizing the Son-Rise Program too. Hayden tantrumed more than normal. He was tired, in a new location, and well there is only one of me to go around. Hayden asked me several times to go home. So after being there less than 24 hours I made the decision to pack up and head home.
I have to admit I was nervous about driving another 12.5 hours so soon. The kids did great for the most part. Hayden was an absolute angel. I think he was relived to be going home to where he is loved, safe, and 100% accepted. The last hour of the drive was hard on me. My vision began to blur and Ruby was screaming on and off. I don't blame her. She wanted out of her carseat. We made it home about 1am. I put Ruby to bed, gave Hayden a bath, and put the food away. Then I crashed hard until my sweet brown eyed alarm clock went off at 6am.
So here we are tanking it up in the borrowed hbot. Hayden is playing his iPad and I am blogging. I can't help to look at Hayden and see what an amazing gift he is. I am also thinking enjoy your iPad buddy because today is the last time you are going to play with it.
The iPad just supplies him with things to script and takes his attention away from the world. I want to make reading books our new fun way to spend time in hbot.
During the drive I had a lot of time to reflect on the trip and what I learned. So here it goes................
1) The BEST place for Hayden is in his therapy room and there will be NO more breaks from Son-Rise for him.
2) I want breaks and vacations for myself. I am already working on taking an overnight trip to visit a dear friend.
3) I am a FREAKING awesome Mom. The love I have for my kids is like no other. I love my kids enough that I am starting to see to be the best Mom that I can be I have to take care of myself.
4) I CAN drive 12.5 hours in the car with my children with NO help from anyone.
5) Hayden's I pad is going to be a item of the past. He only uses it in hbot but that is going to stop.
6) That I can choose to be happy no matter the situation. This is what I WANT.
7) I am strong and determined and I don't let bumps in the road stop me.
8) I am phasing fruit back out of our diet. It is too hard to monitor Hayden's fruit intake (it is only suppose to be 15% of his daily intake). I want him to develop a deeper love for vegetables and the sugar in fruit is NOT Hayden's friend.
9) Ruby is an amazingly gifted child. She is such a ray of sunshine in my life. Even when she is screaming that she has to potty for the 100th time in the car. My nephew and I actually turned it into a game and laughed hysterically about it ;)
10) Modern medicine tried to kill of my husband this week. He is on the mend but still not up to par.
Happy to be home in our very user friendly environment and my hubby at my side :)
XOXO,
Brandi
Showing posts with label autism biomedical. Show all posts
Showing posts with label autism biomedical. Show all posts
Wednesday, July 4, 2012
Monday, June 11, 2012
It's Up to Hayden to Recover Himself from Autism
The first book I ever read about autism was written by Jenny McCarthy. The book was funny and is what "guided" me down the biomedical path. In her book a phrase really clicked in my mind. Having a child with autism is like having a child trapped in a house. It is our job to open the window and pull that child out. I remember when I reading that book I developed the mantra that not only was I going to open the window in Hayden's world of autism, I was going to blow the roof and side of the house off.
I remember thinking that I was going to beat the hell out of Hayden's autism and take my son back. I was hurt and pissed that MY child had autism. I was not going to let autism win and keep my son. I seriously didn't sleep for weeks at a time so I could research and learn as much about autism and treating it as I could. I never stopped researching and searching for a "cure"up until about a 7 weeks ago.
With the help from The Son-Rise program, mainly Bears I have come to the conclusion that it is up to Hayden to recover himself from autism. Does that mean I am going to sit back and watch......NO! My role in Hayden's recovery is to give him the tools he needs to recover from autism. So what is in Hayden's Tool Box of Recovery:
I remember thinking that I was going to beat the hell out of Hayden's autism and take my son back. I was hurt and pissed that MY child had autism. I was not going to let autism win and keep my son. I seriously didn't sleep for weeks at a time so I could research and learn as much about autism and treating it as I could. I never stopped researching and searching for a "cure"up until about a 7 weeks ago.
With the help from The Son-Rise program, mainly Bears I have come to the conclusion that it is up to Hayden to recover himself from autism. Does that mean I am going to sit back and watch......NO! My role in Hayden's recovery is to give him the tools he needs to recover from autism. So what is in Hayden's Tool Box of Recovery:
- The Son-Rise way of life.
- I am showing him that I love and respect him just the way he is. I don't want to change Hayden, I want Hayden to be who he WANTS to be.
- Model and show Hayden how super wonderful and fun people are. Show him that we are helpful and don't want to control him.
- Give Hayden the Control (I have been struggling with this one a bit, but I am getting there)
- The proper diet to heal his sick body.
- GAPS is our diet of choice. Hayden eats NO refined sugar, NO lactose, and NO grains.
- This is not an elimination diet. It actually heals the body. Hayden has gained 9 pounds since starting this diet 6 weeks ago :)
- Hyperbaric Oxygen Therapy
- To reduce oxidative stress
- Aid in detoxification
- Decrease inflammation
- Vitamins
- This gives Hayden extra doses of vitamins that are difficult for Hayden's body to get enough of. We are actually phasing a lot of his vitamins and supplements out now that he is eating a much healthier diet. We were up to 24 different vitamins a day and now we are down to 10.
What a crazy roller coaster ride of emotions I have been on for the past 2.5 years since I diagnosed Hayden. For the first time I am at complete and total peace with where we are at and where we are going. I feel such a huge relief knowing that Hayden has to recover himself from autism. He has to WANT to be present in our world. There is no forcing this on him. I have to tell you that I see that fire and sparkle in his eye. Hayden WANTS to recovery himself and is working so hard.
A good analogy would be learning to swimming. Every time you swim you swim out a little deeper or let go a little longer. Sometimes you realize that no one is holding on and you are fearful and clutch to the side of the pool. Other days you take a running jump off the diving board. Once you let go of your fears and trust yourself and your teacher you are swimming like a pro.
That is what my little Hayden is doing every day. He reaches out a little farther. He says a longer sentence, he tantrums less, he gives longer eye contact. Then there are days that something happens and he stays in his "autism house of safety". Sooner or later he comes around and reaches out a little further.
I have to say this again.....I LOVE AND ACCEPT MY SON JUST THE WAY HE IS. I see him for who he is and not what he has. With out a doubt the coolest person I have ever met. I am in this for the long run and will not stop equipping Hayden with every tool he needs until he is 100% recovered from autism. When he does recover himself there is going to be one hell of a party.
Brandi
Monday, June 4, 2012
Blessed in So Many Ways
Today was one of those days that showed me just how far we have come with Hayden. He is just an amazing person that has over come so much and continues to teach me how to live life to the fullest.
Brandon and I took Hayden to have his blood drawn to find what materials are safest to use in the fillings he needs in his teeth. I was nervous about taking him for the blood draw. I kept telling myself why we were getting the blood drawn and that I wanted to be strong for Hayden.
We pull into the parking lot and Hayden begins to cry. I don't like putting him through this and I am grateful that he no longer needs routine blood draws. We get out of the truck and walk inside. I am carrying Hayden squeezing him tight and telling him that it will be okay. I tell him that we are going to get the blood drawn, it will be a little pinch, and we will be all done and leave.
Once we got inside Hayden calmed down and walked to the waiting area. The hospital was busy today and we had to wait 45 minutes before it was our turn to go back. The waiting room was packed, the TV was blaring, and the room was loud with people moving in and out. Hayden did great!! He sat in his chair and looked around the room for some time. When people talked to him he looked at them. Hayden got up and played with the bead maze appropriately in a calm manner. At one point he started to climb on top of the bead maze. I went over and calmly told Hayden, "You can get down so you don't get hurt or you can come and sit with Mommy." Much to my surprise Hayden choose to come and sit with me with out even a whimper.
It was our turn to go back and Hayden got upset. I totally understand. He has been through getting his blood drawn at this location several times. It usually takes at least 3 sticks to get his blood. Hayden is a horrible stick and has freakish strength when getting his blood drawn.
We get to the room. I lay Hayden down on the table, we wrap him up, I lay over the top of him and hold him tight. I talked to him and sing songs to him the entire time. During Hayden's screaming I told him that we are going to go shopping after we left. He instantly calmed down and said, "shopping." That seemed to be the magic word to say and everyone laughed. It felt like it took about 3 hours, but I think it was more like 10 minutes. It seems every time that we have Hayden's blood drawn it gets harder and harder on me. It only took two sticks and we were done and it was time to go. Hayden even went into another room to get stickers. He looked the nurse in the eye while she was talking to him and answered her questions. I was so proud of Hayden!! To have someone hold you down and draw your blood and still communicate with them......AMAZING!!
I kept it together while they were drawing blood but when we walked out I began to loose it. I don't want to put my son through this. It also made me think of what is to come. We are one step further to actually getting his teeth fixed. I am so nervous about putting anything foreign into his body and Hayden going under general anesthesia. I don't want to loose my little man again. We have come so far.
We went to the store and let Hayden pick out his new toy. He looked them all over and decided on ONE toy and walked to the check out lane with out any issues.
Hayden has been in a great mood the rest of the day. He played in the pond with my parents 150 lbs English mastiff, Daisy. They had so much fun playing together. Daisy would charge past Hayden. Hayden was pelted with sand and it created waves. He was laughing and smiling. He was talking to Daisy and telling her what to do. Hayden even listened when I told him he was going to far in the water. He would either turn around or stay in the same place.
Ruby and Hayden were throwing rocks in the pond and Ruby dropped her rock. With out any prompting Hayden picked up the rock she dropped and gave it to Ruby. Ruby said, "Thank You Ba Ba." Hayden said, "Your welcome....come on."
Today was an awesome reminder of just how far we have come. There was a day that I didn't even think that Hayden heard what I was saying nor did he even know I was in the same room. Today he is following directions, helping his sister, smiling, laughing, and the best of all giving me 3 million kisses a day :)
Brandon and I took Hayden to have his blood drawn to find what materials are safest to use in the fillings he needs in his teeth. I was nervous about taking him for the blood draw. I kept telling myself why we were getting the blood drawn and that I wanted to be strong for Hayden.
We pull into the parking lot and Hayden begins to cry. I don't like putting him through this and I am grateful that he no longer needs routine blood draws. We get out of the truck and walk inside. I am carrying Hayden squeezing him tight and telling him that it will be okay. I tell him that we are going to get the blood drawn, it will be a little pinch, and we will be all done and leave.
Once we got inside Hayden calmed down and walked to the waiting area. The hospital was busy today and we had to wait 45 minutes before it was our turn to go back. The waiting room was packed, the TV was blaring, and the room was loud with people moving in and out. Hayden did great!! He sat in his chair and looked around the room for some time. When people talked to him he looked at them. Hayden got up and played with the bead maze appropriately in a calm manner. At one point he started to climb on top of the bead maze. I went over and calmly told Hayden, "You can get down so you don't get hurt or you can come and sit with Mommy." Much to my surprise Hayden choose to come and sit with me with out even a whimper.
It was our turn to go back and Hayden got upset. I totally understand. He has been through getting his blood drawn at this location several times. It usually takes at least 3 sticks to get his blood. Hayden is a horrible stick and has freakish strength when getting his blood drawn.
We get to the room. I lay Hayden down on the table, we wrap him up, I lay over the top of him and hold him tight. I talked to him and sing songs to him the entire time. During Hayden's screaming I told him that we are going to go shopping after we left. He instantly calmed down and said, "shopping." That seemed to be the magic word to say and everyone laughed. It felt like it took about 3 hours, but I think it was more like 10 minutes. It seems every time that we have Hayden's blood drawn it gets harder and harder on me. It only took two sticks and we were done and it was time to go. Hayden even went into another room to get stickers. He looked the nurse in the eye while she was talking to him and answered her questions. I was so proud of Hayden!! To have someone hold you down and draw your blood and still communicate with them......AMAZING!!
I kept it together while they were drawing blood but when we walked out I began to loose it. I don't want to put my son through this. It also made me think of what is to come. We are one step further to actually getting his teeth fixed. I am so nervous about putting anything foreign into his body and Hayden going under general anesthesia. I don't want to loose my little man again. We have come so far.
We went to the store and let Hayden pick out his new toy. He looked them all over and decided on ONE toy and walked to the check out lane with out any issues.
Hayden has been in a great mood the rest of the day. He played in the pond with my parents 150 lbs English mastiff, Daisy. They had so much fun playing together. Daisy would charge past Hayden. Hayden was pelted with sand and it created waves. He was laughing and smiling. He was talking to Daisy and telling her what to do. Hayden even listened when I told him he was going to far in the water. He would either turn around or stay in the same place.
Ruby and Hayden were throwing rocks in the pond and Ruby dropped her rock. With out any prompting Hayden picked up the rock she dropped and gave it to Ruby. Ruby said, "Thank You Ba Ba." Hayden said, "Your welcome....come on."
Today was an awesome reminder of just how far we have come. There was a day that I didn't even think that Hayden heard what I was saying nor did he even know I was in the same room. Today he is following directions, helping his sister, smiling, laughing, and the best of all giving me 3 million kisses a day :)
Friday, June 1, 2012
Ups and downs and all around!!
We have had an interesting week :) We have added whole eggs to our diet and introduced "pancakes" today. I have to report that the pancakes were super yummy and easy to make. Here is the recipe if you are interested:
Melt a tablespoon of ghee in skillet over medium heat
1/4 cups butternut squash
1 cup walnuts
2 whole eggs
I pureed all ingredients in my Vitamix. Pour the batter into small pancakes and cook like you would a normal pancake. These were fabulous!!
We also increased the dose of biotic silver we are using to combat Hayden's yeast issue and increased the amount of probiotics. We are almost done with the yeast protocol!! I am going to leave Hayden on the biotic silver for at least 3 more weeks or until his dental work is done. The probiotics he will continue to take for at least six more months.
Since we started Hayden's recovery from autism journey two years ago there has been a lot ups and downs in his behavior and mood. When we started GAPS four weeks ago his behavior as pretty much been consistent and only progress has been seen. Normally when Hayden is showing signs of regression I begin the freak out process of "what the heck is causing this" and "holy crap...what am I going to do." This time not so much.
I feel this is because I totally and completely accept Hayden just the way he is. I don't need him to recovery from autism. I want him too! On rough days I can still choose to be happy and go with the flow of the day. This week was no exception to that.
It also helped that I knew in my heart that Hayden was stimming more and was more agitated because of the increase in the biotic silver. We started the biotic silver in December and every time we increase the dose Hayden seems to regress a bit.
I am happy to report that Hayden seems to be back to his normal self. We had a great therapy session tonight. Prior to the therapy session Hayden played ring around the rosie and hide and seek with Ruby and I. He is back to talking, giving great eye contact, and seems to be relaxed.
Oh, how I love my little boy :)
Melt a tablespoon of ghee in skillet over medium heat
1/4 cups butternut squash
1 cup walnuts
2 whole eggs
I pureed all ingredients in my Vitamix. Pour the batter into small pancakes and cook like you would a normal pancake. These were fabulous!!
We also increased the dose of biotic silver we are using to combat Hayden's yeast issue and increased the amount of probiotics. We are almost done with the yeast protocol!! I am going to leave Hayden on the biotic silver for at least 3 more weeks or until his dental work is done. The probiotics he will continue to take for at least six more months.
Since we started Hayden's recovery from autism journey two years ago there has been a lot ups and downs in his behavior and mood. When we started GAPS four weeks ago his behavior as pretty much been consistent and only progress has been seen. Normally when Hayden is showing signs of regression I begin the freak out process of "what the heck is causing this" and "holy crap...what am I going to do." This time not so much.
I feel this is because I totally and completely accept Hayden just the way he is. I don't need him to recovery from autism. I want him too! On rough days I can still choose to be happy and go with the flow of the day. This week was no exception to that.
It also helped that I knew in my heart that Hayden was stimming more and was more agitated because of the increase in the biotic silver. We started the biotic silver in December and every time we increase the dose Hayden seems to regress a bit.
I am happy to report that Hayden seems to be back to his normal self. We had a great therapy session tonight. Prior to the therapy session Hayden played ring around the rosie and hide and seek with Ruby and I. He is back to talking, giving great eye contact, and seems to be relaxed.
Oh, how I love my little boy :)
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| Hayden and Ruby painting |
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| Gotta love the swing set |
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| When God gives you rain splash is water puddles :) |
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| Hayden's new playroom accessory :) |
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| Ruby joining Hayden with legos.....going to have to work on her positioning! |
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| What is not to love about a kiddie pool? |
Thursday, May 24, 2012
We are not going to make my initial goal........
When we started down the biomedical road of Hayden's recovery from autism my goal was to have him recovered before Kindergarten. Well, Hayden turns 5 years old in July and is due to start Kindergarten in the fall. The thing is I am completely okay with not meeting this goal, in fact I have not thought about this goal since we started The Son-Rise Program almost 9 months ago.
My original goal to recover Hayden prior to Kindergarten has no value to me anymore. The truth is I am perfectly happy with where we are at in life. If Hayden chooses not to progress this day forward I will still love and value him the same. I don't NEED him to recover from autism......I WANT him to recover from autism.
A very wise man taught me what a huge difference there is between "wanting" and "needing" things in life. When you need things you are setting yourself up for disappointment or unhappiness when they don't happen. When you want things you are working towards getting them and if you get what you want great and if you don't get what you want that is great too. You have the power to choose your happiness, no one else does. YOU are responsible for your own happiness. You can always have fun with whatever you are doing.
I view daily chores in a whole new light since starting Son-Rise. I no longer view laundry as a negative, time consuming task. I am actually excited to wash our clothes and put them away. How great is it that I have a washer and dryer in my home? How fabulous is it that I get to wear clean smelling clothes every day? It is great that I have the ability to wash my own clothes!! It's AWESOME!!!
I love and accept Hayden just the way he is. It is his choice to recover himself from autism. It is my choice to give him every tool possible to help him along the way :) The love I have for Hayden takes my breath away.....he is a pure, amazing , wonderful, full of life, and has this undescribable spark to him.
I write a letter to the kids every year on their birthday's and put in in their baby books for when they are older. I am so excited to write Hayden's this year!! Age 4 has been a big, big year for our family!!
It's your choice to be happy :)
XOXO,
Brandi
My original goal to recover Hayden prior to Kindergarten has no value to me anymore. The truth is I am perfectly happy with where we are at in life. If Hayden chooses not to progress this day forward I will still love and value him the same. I don't NEED him to recover from autism......I WANT him to recover from autism.
A very wise man taught me what a huge difference there is between "wanting" and "needing" things in life. When you need things you are setting yourself up for disappointment or unhappiness when they don't happen. When you want things you are working towards getting them and if you get what you want great and if you don't get what you want that is great too. You have the power to choose your happiness, no one else does. YOU are responsible for your own happiness. You can always have fun with whatever you are doing.
I view daily chores in a whole new light since starting Son-Rise. I no longer view laundry as a negative, time consuming task. I am actually excited to wash our clothes and put them away. How great is it that I have a washer and dryer in my home? How fabulous is it that I get to wear clean smelling clothes every day? It is great that I have the ability to wash my own clothes!! It's AWESOME!!!
I love and accept Hayden just the way he is. It is his choice to recover himself from autism. It is my choice to give him every tool possible to help him along the way :) The love I have for Hayden takes my breath away.....he is a pure, amazing , wonderful, full of life, and has this undescribable spark to him.
I write a letter to the kids every year on their birthday's and put in in their baby books for when they are older. I am so excited to write Hayden's this year!! Age 4 has been a big, big year for our family!!
It's your choice to be happy :)
XOXO,
Brandi
Wednesday, May 9, 2012
10 meatballs at 5am :)
Ahh.....I am breathing, breaths of relief. We are rapping up our first week on GAPS Introduction diet stage one. We are starting stage two today :)
I must say the first four days on this diet we hardcore for the kids. They choose not to eat any of the food I prepared. They were lethargic, pale, pitiful, and vomiting in the mornings. I did my best to comfort them and keep them well hydrated with water. I offered them all the GAPS legal foods, loved them, and stayed positive. I knew in my mind that it had to get worse before it was going to better. I must say though it was brutal seeing my babies like that!!
I had to work during this process and it was completely heart wrenching to leave them during this time. I called to check on them Sunday and my husband made me feel like the kids were on their death beds. I left work emergently. I was so upset that I got lost on my way home and wound up in Grabill. I think this was God's way of telling me to take a breath and chill.
I got home and the kids were pretty much in the same state that I left them. This was day three of eating nothing. I made the decision to juice a green apple for them to get some carbs in them (at the suggestion of a great friend). I also mixed some vitamins into the juice. Ruby perked up in about 30 minutes and started to eat. Hayden regained some color but it took him about 4 hours before he really started moving around again.
I did an hour of hyperbaric oxygen with them, gave them each a syringe full of chicken broth (which they did not want), and all three of us took an epsom salt bath for about 40 minutes.
We got out of the bath and the kids were ready to EAT and have not stopped since :) Grammie made so meatballs that had carrots and onions shredded in them and that has been the staple food for both kids. Ruby is eating pretty much what I put in front of her now, but Hayden is only eating meatballs. Little does he know what Mommy is putting in his super meatballs.
Here is a list of what I put in his meatballs: fresh garlic, onion, broccoli, cauliflower, liver, carrots, squash, beef fat, chicken fat, and today I heated them up with some homemade ghee. I don't but all of this stuff in at once. I rotate to make sure Hayden is getting all that he needs.
He ate 3 pounds of meatballs yesterday!!! Woot...Woot...Woot!! This morning he woke up at 5 am because he was hungry and wanted meatballs. So at 5am Brandon and myself cheered Hayden on as he ate 10 meatballs. The amazing thing is that Hayden sat completely still while eating his meatballs, gave us typical eye contact, and talked to us while eating.
Although we are only a week into GAPS I am seeing HUGE changes in Hayden. He appears to be so calm, peaceful, and relaxed. It's kind of strange to see this out of him. I am so use to him zipping around the house every moment of the day. Hayden seems now calm enough that he is really seeing things differently. He had one of Ruby's Dora dolls this morning and was really looking her over and telling me about the dolls details. For example, "Dora has bracelet on." I don't feel like he say these details before unless it was on his CARS.
The next BIG, BIG, BIG change that I am totally loving drum roll please..........Hayden is sleeping 11-12 hours a night vs 8-9 hours that he use to sleep. LOVE, LOVE, LOVE that he is sleeping well again :)
I am feeling pretty good on the diet and don't have any issues to report. I did have a pretty bad headache the first couple of days. I think this was due to sugar and caffeine withdrawal. I feel pretty energized now.
We are moving on to Stage 2 of GAPS Introduction diet. Bring on the Ghee, egg yolks, and fermented vegetables!!!
I must say the first four days on this diet we hardcore for the kids. They choose not to eat any of the food I prepared. They were lethargic, pale, pitiful, and vomiting in the mornings. I did my best to comfort them and keep them well hydrated with water. I offered them all the GAPS legal foods, loved them, and stayed positive. I knew in my mind that it had to get worse before it was going to better. I must say though it was brutal seeing my babies like that!!
I had to work during this process and it was completely heart wrenching to leave them during this time. I called to check on them Sunday and my husband made me feel like the kids were on their death beds. I left work emergently. I was so upset that I got lost on my way home and wound up in Grabill. I think this was God's way of telling me to take a breath and chill.
I got home and the kids were pretty much in the same state that I left them. This was day three of eating nothing. I made the decision to juice a green apple for them to get some carbs in them (at the suggestion of a great friend). I also mixed some vitamins into the juice. Ruby perked up in about 30 minutes and started to eat. Hayden regained some color but it took him about 4 hours before he really started moving around again.
I did an hour of hyperbaric oxygen with them, gave them each a syringe full of chicken broth (which they did not want), and all three of us took an epsom salt bath for about 40 minutes.
We got out of the bath and the kids were ready to EAT and have not stopped since :) Grammie made so meatballs that had carrots and onions shredded in them and that has been the staple food for both kids. Ruby is eating pretty much what I put in front of her now, but Hayden is only eating meatballs. Little does he know what Mommy is putting in his super meatballs.
Here is a list of what I put in his meatballs: fresh garlic, onion, broccoli, cauliflower, liver, carrots, squash, beef fat, chicken fat, and today I heated them up with some homemade ghee. I don't but all of this stuff in at once. I rotate to make sure Hayden is getting all that he needs.
He ate 3 pounds of meatballs yesterday!!! Woot...Woot...Woot!! This morning he woke up at 5 am because he was hungry and wanted meatballs. So at 5am Brandon and myself cheered Hayden on as he ate 10 meatballs. The amazing thing is that Hayden sat completely still while eating his meatballs, gave us typical eye contact, and talked to us while eating.
Although we are only a week into GAPS I am seeing HUGE changes in Hayden. He appears to be so calm, peaceful, and relaxed. It's kind of strange to see this out of him. I am so use to him zipping around the house every moment of the day. Hayden seems now calm enough that he is really seeing things differently. He had one of Ruby's Dora dolls this morning and was really looking her over and telling me about the dolls details. For example, "Dora has bracelet on." I don't feel like he say these details before unless it was on his CARS.
The next BIG, BIG, BIG change that I am totally loving drum roll please..........Hayden is sleeping 11-12 hours a night vs 8-9 hours that he use to sleep. LOVE, LOVE, LOVE that he is sleeping well again :)
I am feeling pretty good on the diet and don't have any issues to report. I did have a pretty bad headache the first couple of days. I think this was due to sugar and caffeine withdrawal. I feel pretty energized now.
We are moving on to Stage 2 of GAPS Introduction diet. Bring on the Ghee, egg yolks, and fermented vegetables!!!
Friday, May 4, 2012
Our new diet.....GAPS :)
I have been thinking, researching, and talking to people about the GAPS diet for the past 8 months. I finally worked up enough courage to start the diet. We officially started the GAPS Introduction diet May 2nd 2012.
You are probably wondering what the GAPS diet is..................it is refined sugar free, lactose free, and grain free. The diet is done in phases based on how you are feeling and what your stools are looking like. Here is a link for more information about GAPS: http://www.gapsdiet.com/
Hayden has been on a very strict diet for the past two years and has made great improvement both mentally and physically but he still has a lot of ups and downs in his behavior and I feel that it is diet based. Basically we just eliminated foods that he was sensitive to and allowed him to eat what we thought was healthy.
I use to let Hayden eat organic fruit with out any question. I thought I was feeding him the best nutrition out there. I was SUPER wrong. Yes fresh fruit is better than chowing down a candy bar but, it is still loaded with sugar.
Sugar is an absolute enemy to Hayden's sick little body. He has a huge problem with yeast over growth and what does yeast feed off of??? Yep, you guessed it sugar!! In order to kill the yeast we have to make their environment in Hayden's body less then ideal. That means getting rid of all sugar. Which also means getting rid of all grains. Grains (carbohydrates) when broken down by the body become sugar.
The GAPS diet will heal Hayden's gastrointestinal tract and all his food sensitivities will be healed. I predict that we will be on GAPS for 2-3 years. I am not in a hurry and want to make sure that we take our time and do the diet properly.
I have committed to this diet with Hayden and Ruby will eat it while she is home. Brandon will eat the diet when he is home with the exception of having pop and cereal. Which he eats the cereal in the garage and I have asked him to hide the cereal so I am not tempted by it.
I have not ate chocolate or consumed coffee for three days now. I thought I was going to have a hard time giving up chocolate and coffee but I feel pretty good. I don't even have a headache today and have my normal amount of energy :) The kids on the other hand are not feeling so well.
Hayden has woken up the past two days vomiting (a normal reaction to starting the diet) and Ruby joined him vomiting at 5am today. Hayden and Ruby are both pale today and just want to lay around. I keep remind myself that I am doing this to help Hayden become healthier and to give him every opportunity in life. It is harder than I thought to see my kids like this :(
What are we eating??? We are eating cooked broccoli, cauliflower, carrots, squash, garlic, onion, chicken, beef, and lots of broth. That is seriously it!! I have made some yummy squash soup and hamburgers that I simmered in chicken stock with cauliflower and squash. Once the hamburgers were cooked I removed the chicken stock, cauliflower, carrots, and I purred them. I poured the puree over the top of the hamburgers and it was yummy!
I have been making everything from scratch. We are eating NO processed foods. I will be making my own yogurt once I get some raw milk which I found a source to get it. I am also fermenting foods. This is a new concept to me and honestly kind of grosses me out. Fermented vegetables are a great source to restore good bacteria into your gut.
I know in my heart that I am doing the right thing. I just hope my kids eat soon!!
You are probably wondering what the GAPS diet is..................it is refined sugar free, lactose free, and grain free. The diet is done in phases based on how you are feeling and what your stools are looking like. Here is a link for more information about GAPS: http://www.gapsdiet.com/
Hayden has been on a very strict diet for the past two years and has made great improvement both mentally and physically but he still has a lot of ups and downs in his behavior and I feel that it is diet based. Basically we just eliminated foods that he was sensitive to and allowed him to eat what we thought was healthy.
I use to let Hayden eat organic fruit with out any question. I thought I was feeding him the best nutrition out there. I was SUPER wrong. Yes fresh fruit is better than chowing down a candy bar but, it is still loaded with sugar.
Sugar is an absolute enemy to Hayden's sick little body. He has a huge problem with yeast over growth and what does yeast feed off of??? Yep, you guessed it sugar!! In order to kill the yeast we have to make their environment in Hayden's body less then ideal. That means getting rid of all sugar. Which also means getting rid of all grains. Grains (carbohydrates) when broken down by the body become sugar.
The GAPS diet will heal Hayden's gastrointestinal tract and all his food sensitivities will be healed. I predict that we will be on GAPS for 2-3 years. I am not in a hurry and want to make sure that we take our time and do the diet properly.
I have committed to this diet with Hayden and Ruby will eat it while she is home. Brandon will eat the diet when he is home with the exception of having pop and cereal. Which he eats the cereal in the garage and I have asked him to hide the cereal so I am not tempted by it.
I have not ate chocolate or consumed coffee for three days now. I thought I was going to have a hard time giving up chocolate and coffee but I feel pretty good. I don't even have a headache today and have my normal amount of energy :) The kids on the other hand are not feeling so well.
Hayden has woken up the past two days vomiting (a normal reaction to starting the diet) and Ruby joined him vomiting at 5am today. Hayden and Ruby are both pale today and just want to lay around. I keep remind myself that I am doing this to help Hayden become healthier and to give him every opportunity in life. It is harder than I thought to see my kids like this :(
What are we eating??? We are eating cooked broccoli, cauliflower, carrots, squash, garlic, onion, chicken, beef, and lots of broth. That is seriously it!! I have made some yummy squash soup and hamburgers that I simmered in chicken stock with cauliflower and squash. Once the hamburgers were cooked I removed the chicken stock, cauliflower, carrots, and I purred them. I poured the puree over the top of the hamburgers and it was yummy!
I have been making everything from scratch. We are eating NO processed foods. I will be making my own yogurt once I get some raw milk which I found a source to get it. I am also fermenting foods. This is a new concept to me and honestly kind of grosses me out. Fermented vegetables are a great source to restore good bacteria into your gut.
I know in my heart that I am doing the right thing. I just hope my kids eat soon!!
Monday, April 23, 2012
I'm Spreading the Word :)
WoW!! What an amazing week I had at The Autism Treatment Center of America!! Maximum Impact was all that I dreamed of and so much more. I did some hard core soul searching and have a defined purpose now. I am working hard on being nonjudgmental and a honest person. So don't ask my opinion if you really don't want it ;) I also learned some great tools to implement in Hayden's Son-Rise Program and made life long friends!!
Some pretty amazing things have been happening to me since I left The Option Institute. The first being that my flight was delayed. I didn't discover this until about 20 minutes until boarding time. The problem with this was I only had a 40 minute lay over and was fearful that I was going to miss my flight. I walked to the intake area of the airport (not sure what it is really called) to find out what to do about my connection. I had tears in my eyes and was shaking a bit. I really wanted to be home when my kids woke up in the morning. As I was waiting in line I took a deep breath and close my eyes to help calm myself down. I said to myself in that moment that I was going to choose to be happy no matter what happens and that I will get home. It was my turn and I told the attendant what happened and she looked at the computer to see about my connecting flight and if there would be other options for me. As luck would have my connecting flight was delayed as well. It was going to be tight to catch my connecting flight but was still possible.
I board the plane and we were headed to the take off area (don't know the name of that either) and the plane stopped. The captain came on the intercom and said that we would not be taking off due to weather conditions at the landing airport. Okay, deep breath!! I decided that if I miss my connection than okay. I pull out my Gut and Phycology Syndrome Book and begin reading. GAPS is the diet we are switching to May 1st to help heal Hayden's little body. The diet is grain free, refined sugar free, and lactose free.
The lady sitting next to me asked if I was a psychology student. I said no, explained the diet and why we were doing it. Amazing as is was the lady told me that she has a 29 year old son with Aspergers. She asked me what kind of life I thought Hayden would have and the effect on my family autism would have. She also told me to be prepared for a lot of heartache and stress.
Well if anyone knows me, you know this women got a ear full in a totally amazing way. I told her what Hayden use to be like and what he is like now. I let her know that there is not a doubt in my mind or anyone that knows Hayden knows that he is going to make a FULL recovery from autism. I explained The Son-Rise Program and all the biomedical treatments we have been doing. The lady then gave me some words of wisdom.....be really careful with how I address my daughter. She felt that should put to much pressure on her daughter because her son had many flaws and that her daughter feels that she has to be perfect.
I kindly listened to her but I addressed her concern. I told her that I am not worried about that at all. I let her know that Hayden is not viewed in a negative way ever. That he is just fine the way he is and so is my daughter. I told her that I feel Ruby having a brother with autism is going to make her a better person. She is going to love and accept people just the way the are. That she is going to have a better understanding of people with special challenges. I also told her that she gets more attention than the average two year old.
I chatted back and forth with this women for around 1.5 hours. The conversation ended on a positive note and the lady said she was very happy to have met me. I gave her a card from The Autism Treatment Center of America. She said she would wish me luck, but I obviously didn't need it :)
The plane was preparing to land and the flight attendant came over the loud speaker to announce connecting flight information. As amazing as it was my connecting flight was taking out of the same gate as my landing flight which means.......drum roll please..........I MADE MY CONNECTING FLIGHT!!! Woot...Woot...and I was going to be home when my babies woke up :) The lady sitting next to me smiled and said....you sure have a spark to you!
I got of the plane had time for a quick bathroom break and loaded on to the same plane again for my flight home. This time I set beside a man that use to live where I flew out of. He asked me what I was doing in Hartford and I told him about the training and he asked me questions about Hayden and the program and was taking in all I had to say. He asked me what I thought cause autism and if you can all imagine I gave him an ear full )
I told him that we live in a toxic world and the food we eat is horrible! He asked a lot of questions about food and I told him to watch Food Inc. He then asked where he could get organic meat and produce from. He told me we was sold on eating healthier. We talked the entire hour flight about nutrition.
My journey home was a good reminder of why I am doing what I am doing and that people truly care :) I do have the power to motivate people to make positive changes in their lives. I am going to keep spreading the word!!!
XOXO,
Brandi
Some pretty amazing things have been happening to me since I left The Option Institute. The first being that my flight was delayed. I didn't discover this until about 20 minutes until boarding time. The problem with this was I only had a 40 minute lay over and was fearful that I was going to miss my flight. I walked to the intake area of the airport (not sure what it is really called) to find out what to do about my connection. I had tears in my eyes and was shaking a bit. I really wanted to be home when my kids woke up in the morning. As I was waiting in line I took a deep breath and close my eyes to help calm myself down. I said to myself in that moment that I was going to choose to be happy no matter what happens and that I will get home. It was my turn and I told the attendant what happened and she looked at the computer to see about my connecting flight and if there would be other options for me. As luck would have my connecting flight was delayed as well. It was going to be tight to catch my connecting flight but was still possible.
I board the plane and we were headed to the take off area (don't know the name of that either) and the plane stopped. The captain came on the intercom and said that we would not be taking off due to weather conditions at the landing airport. Okay, deep breath!! I decided that if I miss my connection than okay. I pull out my Gut and Phycology Syndrome Book and begin reading. GAPS is the diet we are switching to May 1st to help heal Hayden's little body. The diet is grain free, refined sugar free, and lactose free.
The lady sitting next to me asked if I was a psychology student. I said no, explained the diet and why we were doing it. Amazing as is was the lady told me that she has a 29 year old son with Aspergers. She asked me what kind of life I thought Hayden would have and the effect on my family autism would have. She also told me to be prepared for a lot of heartache and stress.
Well if anyone knows me, you know this women got a ear full in a totally amazing way. I told her what Hayden use to be like and what he is like now. I let her know that there is not a doubt in my mind or anyone that knows Hayden knows that he is going to make a FULL recovery from autism. I explained The Son-Rise Program and all the biomedical treatments we have been doing. The lady then gave me some words of wisdom.....be really careful with how I address my daughter. She felt that should put to much pressure on her daughter because her son had many flaws and that her daughter feels that she has to be perfect.
I kindly listened to her but I addressed her concern. I told her that I am not worried about that at all. I let her know that Hayden is not viewed in a negative way ever. That he is just fine the way he is and so is my daughter. I told her that I feel Ruby having a brother with autism is going to make her a better person. She is going to love and accept people just the way the are. That she is going to have a better understanding of people with special challenges. I also told her that she gets more attention than the average two year old.
I chatted back and forth with this women for around 1.5 hours. The conversation ended on a positive note and the lady said she was very happy to have met me. I gave her a card from The Autism Treatment Center of America. She said she would wish me luck, but I obviously didn't need it :)
The plane was preparing to land and the flight attendant came over the loud speaker to announce connecting flight information. As amazing as it was my connecting flight was taking out of the same gate as my landing flight which means.......drum roll please..........I MADE MY CONNECTING FLIGHT!!! Woot...Woot...and I was going to be home when my babies woke up :) The lady sitting next to me smiled and said....you sure have a spark to you!
I got of the plane had time for a quick bathroom break and loaded on to the same plane again for my flight home. This time I set beside a man that use to live where I flew out of. He asked me what I was doing in Hartford and I told him about the training and he asked me questions about Hayden and the program and was taking in all I had to say. He asked me what I thought cause autism and if you can all imagine I gave him an ear full )
I told him that we live in a toxic world and the food we eat is horrible! He asked a lot of questions about food and I told him to watch Food Inc. He then asked where he could get organic meat and produce from. He told me we was sold on eating healthier. We talked the entire hour flight about nutrition.
My journey home was a good reminder of why I am doing what I am doing and that people truly care :) I do have the power to motivate people to make positive changes in their lives. I am going to keep spreading the word!!!
XOXO,
Brandi
Thursday, March 29, 2012
The "New" Statistics
The CDC released the new (2 years old) statistics of the odds of someone being diagnosed with autism. The odds of a boy being diagnosed with autism is 1 in 54. The odds of a girl being diagnosed with autism is 1 in 88. That is a 78% increase since 2007. Here is the link to the article: http://www.cdc.gov/Features/CountingAutism/
These statistics make me sick to my stomach. I know a lot of people are going with "they are better at diagnosing autism now a day theory." Let's think about that for a minute. When I was in school I don't remember there being a single autistic person. I don't recall my parents friends or anyone I knew having an autistic child. I don't recall seeing kids flapping their arms, making no eye contact, and not wanting to play with others. No....I don't think they are better at diagnosing autism!!
These statistics are also skewed due to people like myself not seeking formal diagnosis. Here is an article about that: http://www.disabilityscoop.com/2011/05/09/autism-rate-1-in-38/13061/ So why not seek a formal diagnosis.....for me I knew what the diagnosis was and I didn't want what modern medicine had to "treat" my son's autism aka...covering up symptoms by sedating my child. It was and is a waste of time and money for us.
People often ask my why I feel the autism rates are rising like they are or why I feel Hayden is autistic. Honestly it is genetics and what you are exposed to in the environment. When I say environment I am including diet, medications, and stress.
The movie Food Inc. is an amazing move that I think everyone should watch it. It is absolutely disgusting what is in our food and what has been done to our food. It is now wonder we are so sick, the rates of autism and cancer are through the roof. I cried while watching this movie.
We are killing ourselves with the food we consume. I am heartbroken just thinking about these statistics and what is in store for the future. I think 1 in 54 boys being diagnosed with autism is an epidemic and action needs to be taken.
I don't trust the government one bit....they have poor regulations on the foods we eat, they allow dental fillings that are composed of 50% mercury, and they allow vaccinations to contain poison.
So it is up to US to change these numbers!!! It is up to us to take control of our health and it is up to us to change the future.
I am great full that God gave me Hayden and opened my eyes and changed my ways. I hope to be a huge influence in the autism community and change peoples lives one by one. I am not sure how I am going to do this but it is on the radar. Right now though, Hayden is my focus.
He is well on his way to 100% recovery from autism!!
These statistics make me sick to my stomach. I know a lot of people are going with "they are better at diagnosing autism now a day theory." Let's think about that for a minute. When I was in school I don't remember there being a single autistic person. I don't recall my parents friends or anyone I knew having an autistic child. I don't recall seeing kids flapping their arms, making no eye contact, and not wanting to play with others. No....I don't think they are better at diagnosing autism!!
These statistics are also skewed due to people like myself not seeking formal diagnosis. Here is an article about that: http://www.disabilityscoop.com/2011/05/09/autism-rate-1-in-38/13061/ So why not seek a formal diagnosis.....for me I knew what the diagnosis was and I didn't want what modern medicine had to "treat" my son's autism aka...covering up symptoms by sedating my child. It was and is a waste of time and money for us.
People often ask my why I feel the autism rates are rising like they are or why I feel Hayden is autistic. Honestly it is genetics and what you are exposed to in the environment. When I say environment I am including diet, medications, and stress.
The movie Food Inc. is an amazing move that I think everyone should watch it. It is absolutely disgusting what is in our food and what has been done to our food. It is now wonder we are so sick, the rates of autism and cancer are through the roof. I cried while watching this movie.
We are killing ourselves with the food we consume. I am heartbroken just thinking about these statistics and what is in store for the future. I think 1 in 54 boys being diagnosed with autism is an epidemic and action needs to be taken.
I don't trust the government one bit....they have poor regulations on the foods we eat, they allow dental fillings that are composed of 50% mercury, and they allow vaccinations to contain poison.
So it is up to US to change these numbers!!! It is up to us to take control of our health and it is up to us to change the future.
I am great full that God gave me Hayden and opened my eyes and changed my ways. I hope to be a huge influence in the autism community and change peoples lives one by one. I am not sure how I am going to do this but it is on the radar. Right now though, Hayden is my focus.
He is well on his way to 100% recovery from autism!!
Thursday, March 22, 2012
Reflecting back and new happenings
I continue to be impressed and amazed with the progress that Hayden is making :) I watched a video of what Hayden was like a year ago to what he is like today and it is pretty mind blowing. The biggest change is how happy he is :) He laughs and smiles non stop these days. These are not the drunk / high I am in my own world laughs that he use to have. I say drunk / high because that is what food does to him. He gets an optiant release from foods that he is sensitive to. The laughs now are appropriate and genuine.
I love seeing Hayden so happy. In the playroom the majority of the time is spent playing with him. Instead of just joining him in what he wants to do / stim we are playing games, and signing songs TOGETHER :)
I think he finally has a grasp on emotions. He can tell when someone is hurt, sad, mad, and happy. Today at the playground a little boy fell and got hurt. Hayden was very concerned looking the boy over. He said, "ouch, it's okay," and then made a sad face!!!! This is HUGE!!! He is relating to people and trying to comfort them :) I had to truly fight back the tears of joy on this one.
There are some big events coming to Hayden's Son-Rise Program. The first being that Gerd Winkler, a professional teacher for Son-Rise is coming to work with Hayden and his team April 9th and 10th. (to Hayden's team members I will get with you more in detail about this once I know the exact schedule) Then on April 15th-20th I will be traveling back to The Autism Treatment Center of America for more training.
Hayden's current goals are:
1) To inspire Hayden to look at us while listening for appropriate amount of time based of the activity.
2) Motivate Hayden to speak using nouns, verbs, adjectives, prepositions, articles, and conjunctions or more.
3) Invite Hayden to interact for 9 minutes or greater during an activity.
There have been a lot of ups and downs with Hayden for the past several months and I think it is largely to the yeast treatment protocol he is on and his diet. We are in the final phase of the yeast treatment protocol and I am hopeful that by the start of May we will be 100% committed to Hayden's (ours) new diet.
We are going to the GAPS diet. GAPS stands for The Gut and Psychology Syndrome Diet. What I know is that we will be eating a lot of broths and fermented vegetables. Who wants to come for dinner?? This diet has me intimidated but I know it is what needs done. I am going to be 100% committed to this diet along with Hayden. Brandon and Ruby will cheat outside of the home away from Hayden. I will be giving up chocolate, coffee, and pop. I will for warn everyone so you can stay away from for a few weeks while I detox. The great thing about this diet is that it is done in phases and generally takes 2-3 years. When we are done with the diet Hayden should be able to eat normal foods again with out issues.
I love seeing Hayden so happy. In the playroom the majority of the time is spent playing with him. Instead of just joining him in what he wants to do / stim we are playing games, and signing songs TOGETHER :)
I think he finally has a grasp on emotions. He can tell when someone is hurt, sad, mad, and happy. Today at the playground a little boy fell and got hurt. Hayden was very concerned looking the boy over. He said, "ouch, it's okay," and then made a sad face!!!! This is HUGE!!! He is relating to people and trying to comfort them :) I had to truly fight back the tears of joy on this one.
There are some big events coming to Hayden's Son-Rise Program. The first being that Gerd Winkler, a professional teacher for Son-Rise is coming to work with Hayden and his team April 9th and 10th. (to Hayden's team members I will get with you more in detail about this once I know the exact schedule) Then on April 15th-20th I will be traveling back to The Autism Treatment Center of America for more training.
Hayden's current goals are:
1) To inspire Hayden to look at us while listening for appropriate amount of time based of the activity.
2) Motivate Hayden to speak using nouns, verbs, adjectives, prepositions, articles, and conjunctions or more.
3) Invite Hayden to interact for 9 minutes or greater during an activity.
There have been a lot of ups and downs with Hayden for the past several months and I think it is largely to the yeast treatment protocol he is on and his diet. We are in the final phase of the yeast treatment protocol and I am hopeful that by the start of May we will be 100% committed to Hayden's (ours) new diet.
We are going to the GAPS diet. GAPS stands for The Gut and Psychology Syndrome Diet. What I know is that we will be eating a lot of broths and fermented vegetables. Who wants to come for dinner?? This diet has me intimidated but I know it is what needs done. I am going to be 100% committed to this diet along with Hayden. Brandon and Ruby will cheat outside of the home away from Hayden. I will be giving up chocolate, coffee, and pop. I will for warn everyone so you can stay away from for a few weeks while I detox. The great thing about this diet is that it is done in phases and generally takes 2-3 years. When we are done with the diet Hayden should be able to eat normal foods again with out issues.
Friday, March 2, 2012
Joining Hayden
Wow, I kind of feel like we are getting back to some normalcy. The month of February was rough on us. Early in the month we had nasty colds. Later in the month we had the stomach flu. Then my Dad had emergent open heart surgery last week. I am happy to report that everyone is doing well and my Dad is recovering well.
One of the main principles of The Son-Rise Program is joining Hayden in what he enjoys as a way to connect with him. The majority of people with autism have something called a "stim" or "isim". The stim or isim is the repetitive motion that they do over and over again. Hayden's isims have changed with time. When Hayden has 2 he lined his cars up in a perfectly straight alined line and spined the wheels on the cars. When Hayden is isiming he is in his own world and he is getting pleasure from the motion / action. So this is where the joining comes in.
Tonight at the pool Hayden was spinning in circles in the water. He was having so much fun, but very much in his own world having no clue what is going on around him. A boy that was about 9 years old asked me what he was doing. I simply said, "spinning in the water." I told him it was fun and that he should try it. So the little boy did. Hayden noticed him right away and smiled very big at the little boy. The little boy smiled back at Hayden and said, "Yep, that is fun."
Little did that boy know that he was joining Hayden. When we join Hayden with his isims is truly is fun. I have learned to let go and be in the moment. It is one amazing way to connect with my son. Oddly enough the more we join Hayden the less he isims.
There are many people out there that think you should stop the isim. I can't even imagine doing that to Hayden. He is doing that motion for a purpose. Who am I to say that he shouldn't spin or flap his hands. It feels good to him, it clams him. If someone took my coffee away from and I said I couldn't have it anymore I can't even imagine my reaction. I don't think I would want to be friends with that person.
One of the main principles of The Son-Rise Program is joining Hayden in what he enjoys as a way to connect with him. The majority of people with autism have something called a "stim" or "isim". The stim or isim is the repetitive motion that they do over and over again. Hayden's isims have changed with time. When Hayden has 2 he lined his cars up in a perfectly straight alined line and spined the wheels on the cars. When Hayden is isiming he is in his own world and he is getting pleasure from the motion / action. So this is where the joining comes in.
Tonight at the pool Hayden was spinning in circles in the water. He was having so much fun, but very much in his own world having no clue what is going on around him. A boy that was about 9 years old asked me what he was doing. I simply said, "spinning in the water." I told him it was fun and that he should try it. So the little boy did. Hayden noticed him right away and smiled very big at the little boy. The little boy smiled back at Hayden and said, "Yep, that is fun."
Little did that boy know that he was joining Hayden. When we join Hayden with his isims is truly is fun. I have learned to let go and be in the moment. It is one amazing way to connect with my son. Oddly enough the more we join Hayden the less he isims.
There are many people out there that think you should stop the isim. I can't even imagine doing that to Hayden. He is doing that motion for a purpose. Who am I to say that he shouldn't spin or flap his hands. It feels good to him, it clams him. If someone took my coffee away from and I said I couldn't have it anymore I can't even imagine my reaction. I don't think I would want to be friends with that person.
Thursday, January 12, 2012
A Typical Day with Hayden Part 2 : Hyperbaric Oxygen Therapy
Hayden has been receiving hyperbaric oxygen therapy (hbot) for a little over a year now. We started off by driving to Carmel twice a week for treatment. We did 2 hours of hbot while we were there. The drive was 5 hours round trip. When we were about 20 hours into treatment we started to some significant improvement in Hayden. He was gaining new words every day, he was not as hyper, and he was sleeping better. At that point my parents gave us the money to purchase a chamber to have in our home :)
I had been look at chambers and talking to different people and companies to purchase one. The average price specific model I was looking for (Vitaeris 320) was $20,000.00. They are around $32,000.00 brand new and the does NOT include the oxygen concentrator.
I started watching for a Vitaeris 320 on ebay. I found one that the people were located 3 hours away and were willing to deliver, set it up, and instruct us on how to use it. There was also another person that wanted that specific chamber and my plan was to bid at the last minute. Well at the last minute Ebay pulled the listing. I was CRUSHED!! Come to find out it is illegal to sell medication on ebay (oxygen is a medication) and you have to go through the proper channels and have a prescription....yada....yada....yade.
Well if you know me I am not one to let a little red tape stop me ;) I could have gotten a prescription and I could have went through the proper channels to get Hayden's hbot. All that takes time and additional $$$$ and I didn't have a penny or a second to spare.
I contacted the lady immediately and worked out a deal with her. We paid (well my parents) $9100.00 for Hayden's hbot.......what a DEAL!! They delivered it, set it up, and gave us instructions on how to use it. B-I-N-G-O!!!
We have tried a few different protocols on hbot with Hayden, but what works best for him is 1-1.5 hours daily. Hayden is seriously a hot mess with hbot. Brandon or myself get in the chamber with him. Hayden can take snacks, drinks, toys, or whatever else he may want in. The majority of the time we let him have his iPad in the chamber. This is kind of a nice chill out time for all of us. I feel guilty about letting him have his iPad in there, but Brandon and I need down time too.
We have the chamber set up in our master bedroom. Hayden loves his time in the "rocket ship." We have never had an issue with him not wanting to get in or stay in.
I had been look at chambers and talking to different people and companies to purchase one. The average price specific model I was looking for (Vitaeris 320) was $20,000.00. They are around $32,000.00 brand new and the does NOT include the oxygen concentrator.
I started watching for a Vitaeris 320 on ebay. I found one that the people were located 3 hours away and were willing to deliver, set it up, and instruct us on how to use it. There was also another person that wanted that specific chamber and my plan was to bid at the last minute. Well at the last minute Ebay pulled the listing. I was CRUSHED!! Come to find out it is illegal to sell medication on ebay (oxygen is a medication) and you have to go through the proper channels and have a prescription....yada....yada....yade.
Well if you know me I am not one to let a little red tape stop me ;) I could have gotten a prescription and I could have went through the proper channels to get Hayden's hbot. All that takes time and additional $$$$ and I didn't have a penny or a second to spare.
I contacted the lady immediately and worked out a deal with her. We paid (well my parents) $9100.00 for Hayden's hbot.......what a DEAL!! They delivered it, set it up, and gave us instructions on how to use it. B-I-N-G-O!!!
We have tried a few different protocols on hbot with Hayden, but what works best for him is 1-1.5 hours daily. Hayden is seriously a hot mess with hbot. Brandon or myself get in the chamber with him. Hayden can take snacks, drinks, toys, or whatever else he may want in. The majority of the time we let him have his iPad in the chamber. This is kind of a nice chill out time for all of us. I feel guilty about letting him have his iPad in there, but Brandon and I need down time too.
We have the chamber set up in our master bedroom. Hayden loves his time in the "rocket ship." We have never had an issue with him not wanting to get in or stay in.
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| The large tan box is the oxygen concentrator. We use a flow of 8 lpm. The two silver boxes are the air compressors. The air compressors are what inflates and keeps the chamber inflated |
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| A picture of the chamber partially inflated with Brandon and Hayden inside. |
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| Hayden inside playing his iPad and holding onto a car. If you look in the left upper hand corner of the clear window you can see the oxygen tubing. Ideally Hayden should wear a mask to provide a high concentration of oxygen to him, but he won't wear it. |
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This is what the chamber looks like fully pressurized. It only takes about five minutes to pressurize and depressurize.
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Thursday, November 10, 2011
Hayden's Son Rise Therapy Room
I have had a few questions about the type of therapy program we are doing and what the room looks like. So here is the answers :)
We are running a full time Son-Rise Therapy Program in our home for Hayden. He is currently getting about 30 hours a week of therapy and my goal is to get it up to about 60 hours a week of therapy.
So what is the Son-Rise Program? Well in my own words it is a loving and respectful play therapy that Hayden loves :) I must say that we LOVE it too!! I truly enjoy getting down on the ground with Hayden and just spending time with him with no distractions. It is honestly a nice break from a very over stimulating world. There are no electronics, no other people. It is just Hayden and I doing what he enjoys.
The main focus in Hayden's Son-Rise program is improving and building on communication and eye contact. We do this through joining him, motivation, excitement, energy, and enthusiasm. Tonight in therapy room Hayden and I had a great session. He usually has me draw the Thomas the Tank Engine characters on his dry erase board. When we started doing this 5 weeks ago he would just say, "Harold" when he wanted me to draw him. Tonight he said, "Draw Harold Helicopter Mommy." I then said, "You want me to draw Harold the Helicopter." Hayden replied, "YES." Hayden never said the word "yes" until about a month ago. It seemed that "yes" had no value to him. He now uses it frequently and correctly. Normally I just go ahead and draw the face, number, details, and get the correct colored marker myself. Well not tonight, a light bulb went off! I decided to ask Hayden to hand me the color marker that Harold is. Much to my surprise he did and told me the color. I then congratulated him and made a big, huge deal of it:) I then went on to draw Harold the Helicopter. I decided to ask Hayden to draw his face. He grabbed my hand and we drew it together. We then went on to draw a few other characters. He drew the face himself on several of them, gave me the right color of markers, and told me what numbers they were. It was beautiful!!! I think we spent 20 minutes on this activity. Hayden stayed right with me and was fully engaged and chatted back and forth with me. Through out the whole activity I praised him and told him how smart he was, thanked him for his eye contact, and told him how much I enjoyed spending time with him and drawing Thomas the Tank Engine Characters with him. I need to work on my drawing skills, but you can see the faces that Hayden drew and he even drew a couple wheels on James.
Hayden transitioned from drawing on the dry erase board to drawing on himself. I thought this was a good opportunity to join him.
At first Hayden was in his own world coloring himself. He then noticed that I was coloring my hands. He had the biggest grin on his face. During this time I am telling Hayden how much I enjoy coloring myself with him (which I do....it is truly relaxing) and making funny noises while doing so. Hayden then looks at me in eyes. This is a green light!!! I then expand on the idea of coloring myself. A little background.....Hayden loves my flabby, nasty, jiggly belly (which it's his fault it is like this). He likes to blow raspberries on it and jiggle it. With out hesitation I lifted my shirt and started to draw a big circle on my belly and asked Hayden to draw the eyes, ears, nose, and mouth. He was so EXCITED to do this that he could hardly contain himself. We then made my belly jiggle and I would make the smily face talk. He then lifted his shirt and said, "face my belly." I drew a smily face on his belly. Great fun I must say. He was losing interest so I chased him around the room with my jiggly, smily face belly. Oh, how we both laughed and laughed and laughed.
Here is what Hayden's Therapy Room looks like. It use to be an old crapy, leaky sunroom. Not anymore!!
This is a picture of the french doors that we had a one way view mirror put in. On the inside it is a mirror. Hayden LOVES his mirrors!!
All of toys and games are put up high on a shelf on purpose. This way he has to ask to get what he wants.....very motivating!!
The windows have a frosted glass film on them. They let light in, but you can't see out. This aids in providing a distraction free environment.
Here is the slide that we do creative things with. Hayden likes to jump off the top or jump to me from the top. I like it when we roll several marbles down it and they hit the metal door stop and make a pinging noise!!
This is what the french doors look like on the inside of the house. I can see in, but he can't see me :) Observation is great because we can provide feedback on therapy.
We are running a full time Son-Rise Therapy Program in our home for Hayden. He is currently getting about 30 hours a week of therapy and my goal is to get it up to about 60 hours a week of therapy.
So what is the Son-Rise Program? Well in my own words it is a loving and respectful play therapy that Hayden loves :) I must say that we LOVE it too!! I truly enjoy getting down on the ground with Hayden and just spending time with him with no distractions. It is honestly a nice break from a very over stimulating world. There are no electronics, no other people. It is just Hayden and I doing what he enjoys.
The main focus in Hayden's Son-Rise program is improving and building on communication and eye contact. We do this through joining him, motivation, excitement, energy, and enthusiasm. Tonight in therapy room Hayden and I had a great session. He usually has me draw the Thomas the Tank Engine characters on his dry erase board. When we started doing this 5 weeks ago he would just say, "Harold" when he wanted me to draw him. Tonight he said, "Draw Harold Helicopter Mommy." I then said, "You want me to draw Harold the Helicopter." Hayden replied, "YES." Hayden never said the word "yes" until about a month ago. It seemed that "yes" had no value to him. He now uses it frequently and correctly. Normally I just go ahead and draw the face, number, details, and get the correct colored marker myself. Well not tonight, a light bulb went off! I decided to ask Hayden to hand me the color marker that Harold is. Much to my surprise he did and told me the color. I then congratulated him and made a big, huge deal of it:) I then went on to draw Harold the Helicopter. I decided to ask Hayden to draw his face. He grabbed my hand and we drew it together. We then went on to draw a few other characters. He drew the face himself on several of them, gave me the right color of markers, and told me what numbers they were. It was beautiful!!! I think we spent 20 minutes on this activity. Hayden stayed right with me and was fully engaged and chatted back and forth with me. Through out the whole activity I praised him and told him how smart he was, thanked him for his eye contact, and told him how much I enjoyed spending time with him and drawing Thomas the Tank Engine Characters with him. I need to work on my drawing skills, but you can see the faces that Hayden drew and he even drew a couple wheels on James.
Hayden transitioned from drawing on the dry erase board to drawing on himself. I thought this was a good opportunity to join him.
At first Hayden was in his own world coloring himself. He then noticed that I was coloring my hands. He had the biggest grin on his face. During this time I am telling Hayden how much I enjoy coloring myself with him (which I do....it is truly relaxing) and making funny noises while doing so. Hayden then looks at me in eyes. This is a green light!!! I then expand on the idea of coloring myself. A little background.....Hayden loves my flabby, nasty, jiggly belly (which it's his fault it is like this). He likes to blow raspberries on it and jiggle it. With out hesitation I lifted my shirt and started to draw a big circle on my belly and asked Hayden to draw the eyes, ears, nose, and mouth. He was so EXCITED to do this that he could hardly contain himself. We then made my belly jiggle and I would make the smily face talk. He then lifted his shirt and said, "face my belly." I drew a smily face on his belly. Great fun I must say. He was losing interest so I chased him around the room with my jiggly, smily face belly. Oh, how we both laughed and laughed and laughed.
Here is what Hayden's Therapy Room looks like. It use to be an old crapy, leaky sunroom. Not anymore!!
This is a picture of the french doors that we had a one way view mirror put in. On the inside it is a mirror. Hayden LOVES his mirrors!!
All of toys and games are put up high on a shelf on purpose. This way he has to ask to get what he wants.....very motivating!!
The windows have a frosted glass film on them. They let light in, but you can't see out. This aids in providing a distraction free environment.
Here is the slide that we do creative things with. Hayden likes to jump off the top or jump to me from the top. I like it when we roll several marbles down it and they hit the metal door stop and make a pinging noise!!
This is what the french doors look like on the inside of the house. I can see in, but he can't see me :) Observation is great because we can provide feedback on therapy.
Thursday, October 27, 2011
Is it time to move on??
I can't believe that it is the end of October already!! Time is seriously flying by. Hayden's therapy room is finished and he is getting about 30 weeks of therapy a week. We still need more volunteers!!! We need volunteers to work with Hayden or watch Ruby so we can work with Hayden. If you know anyone send them our way.
Hayden had a check up at his specialist in Carmel this week. Hayden weighs 32 lbs and is 39 inches tall. Overall he had a good check up. We are fading out some of his supplements(thank goodness). Hayden will start seeing the doctor every 3 months instead of every 5 weeks. He got his lab results back and his gut remains a yeasty mess. GRRR!!!! We have been working so hard for the past two years to get rid of the yeast and it just won't let go of my little man.
The whole yeast thing has me. I am thinking about and researching different options to do and try. I am leaning towards a diet change. We are already gluten, almond and dairy free, limit soy, limit sugar, no artificial colors, and an all organic diet. The two different diets that I am looking at is the SCD (specific carbohydrate diet and the GAPS diet. These diets eliminate food that feed yeast. The problem is that they are a challenge to do. I once thought that it was going to be impossible to get Hayden off dairy, but we did and he helped him so much. I am leaning towards the SCD diet because it does not involve going to the butcher and getting bones from animal cut in half to make stock with and eating fermented vegetables is not a requirement of the SCD. However the GAPS diet is amazing for gut healing. I wish someone could just tell me what to do!!!
I am also considering taking Hayden to a different specialist for a second opinion. I kind of feel like our Dr in Carmel has gotten Hayden as far as she can. She is wonderful and I have a ton of respect for her, after all she gave me my son back :) There is just something telling me that it is time to move on. This is not going to be an easy decision. The one doctor that I am considering seeing has an office in Texas and one in New York $$$$$$!!!
I do know this though.....when I switch Hayden's diet I am going on that diet with him. NO more cheating for me!!! If it is good for him it is good for me and I need to be 100% supportive and not cheat behind his back.
I think I have also figured out Hayden's strange bouts of SUPER-DE-DUPER hyperactivity no-sleeping cycles. Back in May after Brandon and I went the Autism One we switched how we were doing Hayden's hyperbaric oxygen therapy treatments. We started using a protocol that you do 1.5 hours a day for 30 days and then take 30 days off from hbot. We also started Hayden's heavy metal detox (chelation) at this time. I thought his nightmare of a behavior was from detox and left it at that. Well he have been off chelation for almost 2 months now. Hayden had a round of his freakish hyperactivity no-sleeping period earlier this month. Well this month is a non-hbot month. I started thinking about why, what are we doing differently, did he eat something he was not suppose to??
Ta-Dah.....light bulb went off in my mind....it's the hbot!! Sure enough two sessions in the hbot, Hayden was sleeping better and the freakish hyperactivity was going away. Huge sigh of relief. So we are now going to do one hour of hbot every other day.
I wish I would have video taped his freakish hyperactivity. I mean constant movement with several movements in one and a hot stimming mess. It was HORRIBLE!!! He would be up at 3am and ready to play and not take no for an answer. It is amazing that Brandon and I survived this behavior. Just thinking about it makes me want to hide in a corner and rock back and forth.
We have a teacher from the Son-Rise program coming the first week of December to working with Hayden, answer our questions, and give us some feedback. I am very excited about this. Brandon and I have also decided that I am going back to the Son-Rise program in April for another weeks worth of training. I can't wait to go back. It is such an amazing place. I wish we could just pack up and move there so I could become a certified Son-Rise teacher and help more families. Maybe one day!!
Hayden has been making some great strides with the Son-Rise program. He is communicating so much more. He is actually telling me his emotions. I ask him what is wrong and he tells me that he is sad or angry. He has even told me he is happy :) In the past week we were snuggling and he sang the whole entire song that I made up for him as a baby. WoW...that sure brought out the water works!! Even Brandon had a tear in his eye. His eye contact is also greatly improving.
I am beyond proud of my little man and all of his hard work. It is pretty amazing that we our on our way to recovery. I read a snip it of his evaluation to public school system did when he turned three. It said that Hayden severely autistic. It is always good to remind myself of where we were and to think of where we are now. Hayden is no where near the severe side of autism.
Hayden had a check up at his specialist in Carmel this week. Hayden weighs 32 lbs and is 39 inches tall. Overall he had a good check up. We are fading out some of his supplements(thank goodness). Hayden will start seeing the doctor every 3 months instead of every 5 weeks. He got his lab results back and his gut remains a yeasty mess. GRRR!!!! We have been working so hard for the past two years to get rid of the yeast and it just won't let go of my little man.
The whole yeast thing has me. I am thinking about and researching different options to do and try. I am leaning towards a diet change. We are already gluten, almond and dairy free, limit soy, limit sugar, no artificial colors, and an all organic diet. The two different diets that I am looking at is the SCD (specific carbohydrate diet and the GAPS diet. These diets eliminate food that feed yeast. The problem is that they are a challenge to do. I once thought that it was going to be impossible to get Hayden off dairy, but we did and he helped him so much. I am leaning towards the SCD diet because it does not involve going to the butcher and getting bones from animal cut in half to make stock with and eating fermented vegetables is not a requirement of the SCD. However the GAPS diet is amazing for gut healing. I wish someone could just tell me what to do!!!
I am also considering taking Hayden to a different specialist for a second opinion. I kind of feel like our Dr in Carmel has gotten Hayden as far as she can. She is wonderful and I have a ton of respect for her, after all she gave me my son back :) There is just something telling me that it is time to move on. This is not going to be an easy decision. The one doctor that I am considering seeing has an office in Texas and one in New York $$$$$$!!!
I do know this though.....when I switch Hayden's diet I am going on that diet with him. NO more cheating for me!!! If it is good for him it is good for me and I need to be 100% supportive and not cheat behind his back.
I think I have also figured out Hayden's strange bouts of SUPER-DE-DUPER hyperactivity no-sleeping cycles. Back in May after Brandon and I went the Autism One we switched how we were doing Hayden's hyperbaric oxygen therapy treatments. We started using a protocol that you do 1.5 hours a day for 30 days and then take 30 days off from hbot. We also started Hayden's heavy metal detox (chelation) at this time. I thought his nightmare of a behavior was from detox and left it at that. Well he have been off chelation for almost 2 months now. Hayden had a round of his freakish hyperactivity no-sleeping period earlier this month. Well this month is a non-hbot month. I started thinking about why, what are we doing differently, did he eat something he was not suppose to??
Ta-Dah.....light bulb went off in my mind....it's the hbot!! Sure enough two sessions in the hbot, Hayden was sleeping better and the freakish hyperactivity was going away. Huge sigh of relief. So we are now going to do one hour of hbot every other day.
I wish I would have video taped his freakish hyperactivity. I mean constant movement with several movements in one and a hot stimming mess. It was HORRIBLE!!! He would be up at 3am and ready to play and not take no for an answer. It is amazing that Brandon and I survived this behavior. Just thinking about it makes me want to hide in a corner and rock back and forth.
We have a teacher from the Son-Rise program coming the first week of December to working with Hayden, answer our questions, and give us some feedback. I am very excited about this. Brandon and I have also decided that I am going back to the Son-Rise program in April for another weeks worth of training. I can't wait to go back. It is such an amazing place. I wish we could just pack up and move there so I could become a certified Son-Rise teacher and help more families. Maybe one day!!
Hayden has been making some great strides with the Son-Rise program. He is communicating so much more. He is actually telling me his emotions. I ask him what is wrong and he tells me that he is sad or angry. He has even told me he is happy :) In the past week we were snuggling and he sang the whole entire song that I made up for him as a baby. WoW...that sure brought out the water works!! Even Brandon had a tear in his eye. His eye contact is also greatly improving.
I am beyond proud of my little man and all of his hard work. It is pretty amazing that we our on our way to recovery. I read a snip it of his evaluation to public school system did when he turned three. It said that Hayden severely autistic. It is always good to remind myself of where we were and to think of where we are now. Hayden is no where near the severe side of autism.
Wednesday, June 1, 2011
Autism One and Beyond
WoW!!! Autism One in Chicago was amazing. Brandon and I had such a great time and learned a lot. We met a lot of amazing parents, recovered kids, recovered adults, and parents that refuse to give up on their children. I must say that there was so much inspiration and pure positive energy at the conference. It was awesome to be surrounded by people that are walking the same path we are. We will with out a doubt be going back.
I have to give a huge shout out to my parents and Aunt Sandie for making it possible!!! They took on the challenge of caring for the kids while we were away for four whole days and nights. I couldn't have asked for Hayden and Ruby to be in better hands. I know fun was had by all. When we picked up Hayden and Ruby my parents looked like they had been beaten and desperate need of a good nights sleep. I can't say thank you enough. A break was just what Brandon and I needed!!!
I found the therapy solution that I was looking for!!! I will be traveling to Massachusetts the end of August for 5 days of intense training in the Son-Rise program (http://www.autismtreatmentcenter.org/). The Son-Rise program is based on love and respect. I will be the main person providing Hayden's therapy and will teach others how to work with him. I am so excited......I know this is the answer to my prayers. We can incorporate therapy into every part of our day.
Therapy for Hayden has been frustrating since he aged out of First Steps at the age of three. We finally found a speech therapist that we love, but occupational therapy has proved to be a real challenge. People just don't get Hayden or listen to me. I am pretty sure that I can be intimidating. I try hard to be respectful when voicing my opinion or offering suggestions, but sometimes I feel like I am talking to a wall!!!! I have done my research and I work very hard with my son, freaking LISTEN to me!!! It is beyond frustrating when people fell the need to listen out all the special training they have received / done......NEWS FLASH....if you can't apply it then it don't mean shit!!! Okay...that's my rant and I am done. We have been through four occupational therapists now and only liked one.
We are also going to get a second opinion to make sure that we are doing everything we can for Hayden while he is still young and has the best chance at recovery. One of the doctors that we are considering is in New York City and has two autistic children himself, and the other is GI specialist that has clinics in Florida and New York City. We are leaning towards the GI specialist because we continue to struggle with Hayden's gut.
We are also going to follow a different protocol for Hayden's hyperbaric oxygen therapy treatments. We are going to do 1.5 hours daily for 30 days and then take 30 days off. We currently are doing an hour a day.
The next thing we are going to add to Hayden's treatment plan is modulated music. Modulated music is music that is in varying frequencies and tones that he will listen to with headphones. I am not sure how and when this will all go done but this is something that we will do daily at home.
I have also realized how important it is to take time for myself!!!!! It truly makes me a better Mom and I need to learn to ask for help and accept help :)
Hayden having autism has been a true gift from God!!! I know that may sound odd but man it has opened my eyes and showed my how to live and love life. Hayden is a true inspiration and I am so lucky to be his Mom.
***As a side note I am selling all of Brandon's unnecessary body parts and organs to fund Hayden's autism treatments. I also have no problem pimping him out for services. Contact me if you are interested ;) ***
I have to give a huge shout out to my parents and Aunt Sandie for making it possible!!! They took on the challenge of caring for the kids while we were away for four whole days and nights. I couldn't have asked for Hayden and Ruby to be in better hands. I know fun was had by all. When we picked up Hayden and Ruby my parents looked like they had been beaten and desperate need of a good nights sleep. I can't say thank you enough. A break was just what Brandon and I needed!!!
I found the therapy solution that I was looking for!!! I will be traveling to Massachusetts the end of August for 5 days of intense training in the Son-Rise program (http://www.autismtreatmentcenter.org/). The Son-Rise program is based on love and respect. I will be the main person providing Hayden's therapy and will teach others how to work with him. I am so excited......I know this is the answer to my prayers. We can incorporate therapy into every part of our day.
Therapy for Hayden has been frustrating since he aged out of First Steps at the age of three. We finally found a speech therapist that we love, but occupational therapy has proved to be a real challenge. People just don't get Hayden or listen to me. I am pretty sure that I can be intimidating. I try hard to be respectful when voicing my opinion or offering suggestions, but sometimes I feel like I am talking to a wall!!!! I have done my research and I work very hard with my son, freaking LISTEN to me!!! It is beyond frustrating when people fell the need to listen out all the special training they have received / done......NEWS FLASH....if you can't apply it then it don't mean shit!!! Okay...that's my rant and I am done. We have been through four occupational therapists now and only liked one.
We are also going to get a second opinion to make sure that we are doing everything we can for Hayden while he is still young and has the best chance at recovery. One of the doctors that we are considering is in New York City and has two autistic children himself, and the other is GI specialist that has clinics in Florida and New York City. We are leaning towards the GI specialist because we continue to struggle with Hayden's gut.
We are also going to follow a different protocol for Hayden's hyperbaric oxygen therapy treatments. We are going to do 1.5 hours daily for 30 days and then take 30 days off. We currently are doing an hour a day.
The next thing we are going to add to Hayden's treatment plan is modulated music. Modulated music is music that is in varying frequencies and tones that he will listen to with headphones. I am not sure how and when this will all go done but this is something that we will do daily at home.
I have also realized how important it is to take time for myself!!!!! It truly makes me a better Mom and I need to learn to ask for help and accept help :)
Hayden having autism has been a true gift from God!!! I know that may sound odd but man it has opened my eyes and showed my how to live and love life. Hayden is a true inspiration and I am so lucky to be his Mom.
***As a side note I am selling all of Brandon's unnecessary body parts and organs to fund Hayden's autism treatments. I also have no problem pimping him out for services. Contact me if you are interested ;) ***
Sunday, May 8, 2011
Heavy Metal Detox, Yeast, Allergies, and School
The last six weeks have been a roller coaster of events and emotions.
We started Hayden's heavy metal detoxification using dmsa. Hayden takes dmsa four times a day for three days, then has 11 days off dmsa and we repeat the cycle. We are doing four cycles then re-evaluating lab work of heavy metals and check his liver and kidney function. We have completed three cycles so far. One more cycle and then a break!
I am glad to be finally getting the heavy metals out of his body but boy has it been rough!!! Hayden has been "off" for about six weeks now and it scares the crap out of. He has NEVER shown regression for more than a day or so and we are now six weeks in. I have been told repeatedly that regression is normal and to hang on because big changes are about to happen.
So what kind of regression am I seeing in Hayden? He is stimming again :( We got to the point were Hayden didn't stim anymore. We are seeing lots of hand flapping, spinning, and his shrieking is back. He is laughing at inappropriate times / things. It hurts to see him like this. I know that there is something going on his little body that is effecting him neurologically causing him to stim and I want it GONE!!!
He was also not sleeping well for about 4.5 weeks. Hayden was waking up 3-4 times a night and up for the day at 4-5am. He also stopped napping. Hayden not sleeping totally worn me down and kicked my butt. I am very happy to report that he is back to sleeping 10 hours at night and taking a one hour nap during the day. Thank goodness.........I seriously thought I was going to loose my mind.
Hayden is also having more tantrums. These are not your typical three year old tantrums!! These are tantrums that can last for an hour. Hayden loses all ability to be rational or "reached" during these tantrums. I feel so helpless when he is like this. It breaks my heart to see the rage in his eyes, the spitting, the kicking, the throwing of objects or himself.
All of the negatives and regression we have seen some positive growth!! Hayden's social skills are improving and he has a little girlfriend at school :) They sit by one another, Hayden likes to play with her hair, they have even been spotted holding hands!!! I can't even put into words how truly amazing this is. There was a time when no one, I mean NO ONE could even interact with Hayden with out him having a complete and total melt down and now he has a "girlfriend". Did I mention that she is the only girl in Hayden's class? I got the chance to talk with her parents and they said that she talks about Hayden all the time!! One of my biggest concerns is that other children will not accept Hayden and that they will treat him poorly.
It is also amazing to watch Hayden interact with my parents. He gets so excited to see them :) He is comfortable sitting in their laps, hugging them, and kissing them. There was a time this was painful for Hayden and now he totally embraces it.
We have been enjoying the zoo!! It is so much fun to see how excited Ruby and Hayden get over the animals and to hear them tell me what they are and make animals noises. Hayden also enjoys being around other people at the zoo and running and playing with the children. This is pretty exciting stuff for us......every day things that people take for granted!!
So why the change...........I am not 100% sure! At first I thought it was because Hayden accidentally ate some gluten. A week into the regression I figured that was not it. Could it be the DMSA....maybe? Could it be seasonal allergies that have triggered a histamine release in his body....maybe? Could it be a yeast kick up in his body?
I think its the yeast! His behaviors are typical of yeast "flare" up. Hayden has a doctors appointment on Tuesday and we get some labs results so I should know more than.
I am just hanging on and trying hard to stay cool, calm, and collective during this rough patch.
I just want my little man back and I think that we are slowly but surely getting there!!
We also made a decision on school next year. Hayden and Ruby will be attending Peace Montessori in New Haven. I am not looking forward to the drive (50 minutes one way) but it is the best place for Hayden at this time. It is our hope that Hayden will be able to go back to Oak Farm in a year or two.
We started Hayden's heavy metal detoxification using dmsa. Hayden takes dmsa four times a day for three days, then has 11 days off dmsa and we repeat the cycle. We are doing four cycles then re-evaluating lab work of heavy metals and check his liver and kidney function. We have completed three cycles so far. One more cycle and then a break!
I am glad to be finally getting the heavy metals out of his body but boy has it been rough!!! Hayden has been "off" for about six weeks now and it scares the crap out of. He has NEVER shown regression for more than a day or so and we are now six weeks in. I have been told repeatedly that regression is normal and to hang on because big changes are about to happen.
So what kind of regression am I seeing in Hayden? He is stimming again :( We got to the point were Hayden didn't stim anymore. We are seeing lots of hand flapping, spinning, and his shrieking is back. He is laughing at inappropriate times / things. It hurts to see him like this. I know that there is something going on his little body that is effecting him neurologically causing him to stim and I want it GONE!!!
He was also not sleeping well for about 4.5 weeks. Hayden was waking up 3-4 times a night and up for the day at 4-5am. He also stopped napping. Hayden not sleeping totally worn me down and kicked my butt. I am very happy to report that he is back to sleeping 10 hours at night and taking a one hour nap during the day. Thank goodness.........I seriously thought I was going to loose my mind.
Hayden is also having more tantrums. These are not your typical three year old tantrums!! These are tantrums that can last for an hour. Hayden loses all ability to be rational or "reached" during these tantrums. I feel so helpless when he is like this. It breaks my heart to see the rage in his eyes, the spitting, the kicking, the throwing of objects or himself.
All of the negatives and regression we have seen some positive growth!! Hayden's social skills are improving and he has a little girlfriend at school :) They sit by one another, Hayden likes to play with her hair, they have even been spotted holding hands!!! I can't even put into words how truly amazing this is. There was a time when no one, I mean NO ONE could even interact with Hayden with out him having a complete and total melt down and now he has a "girlfriend". Did I mention that she is the only girl in Hayden's class? I got the chance to talk with her parents and they said that she talks about Hayden all the time!! One of my biggest concerns is that other children will not accept Hayden and that they will treat him poorly.
It is also amazing to watch Hayden interact with my parents. He gets so excited to see them :) He is comfortable sitting in their laps, hugging them, and kissing them. There was a time this was painful for Hayden and now he totally embraces it.
We have been enjoying the zoo!! It is so much fun to see how excited Ruby and Hayden get over the animals and to hear them tell me what they are and make animals noises. Hayden also enjoys being around other people at the zoo and running and playing with the children. This is pretty exciting stuff for us......every day things that people take for granted!!
So why the change...........I am not 100% sure! At first I thought it was because Hayden accidentally ate some gluten. A week into the regression I figured that was not it. Could it be the DMSA....maybe? Could it be seasonal allergies that have triggered a histamine release in his body....maybe? Could it be a yeast kick up in his body?
I think its the yeast! His behaviors are typical of yeast "flare" up. Hayden has a doctors appointment on Tuesday and we get some labs results so I should know more than.
I am just hanging on and trying hard to stay cool, calm, and collective during this rough patch.
I just want my little man back and I think that we are slowly but surely getting there!!
We also made a decision on school next year. Hayden and Ruby will be attending Peace Montessori in New Haven. I am not looking forward to the drive (50 minutes one way) but it is the best place for Hayden at this time. It is our hope that Hayden will be able to go back to Oak Farm in a year or two.
Tuesday, March 1, 2011
I eat, breath, and sleep autism
Autism is always on my brain!! I eat, sleep, and breath autism. There is never a moment in my life that I am not evaluating treatment paths, planning every bite of food that goes in my children's mouths, over analyzing my sons behavior, reading and researching, looking at Ruby for any hint of a "red" flag, or feeling every emotion there is towards autism.
I feel as though in the quest to save my son from the secluded world of autism I have lost my self to it. It consumes every part of me deep into my core and I feel so broken and lost. I am no longer Brandi, I am Hayden's Mom healing him from autism. All the things I use to enjoy have went to the way side.
I need to find balance and I have no clue how. How do I stop my obsessive compulsive behavior towards autism?? Hayden is doing so well and with out a doubt in my mind is going to live a productive happy life. I feel like I need a twelve step program to detox from being so consumed with Hayden's illness. Why can't I just let go and relax?
I need to make time and re-connect with myself and my husband. I have put us on hold and focused every bit of energy I have into my kids. I feel that I would be a better Mom if I would take time for myself and strengthen my relationship with my husband. I want my kids to know the "real"me not the crazy lady obsessed with autism. I want them to know how much I love and value their father and set a positive example of a healthy relationship.
I feel as though in the quest to save my son from the secluded world of autism I have lost my self to it. It consumes every part of me deep into my core and I feel so broken and lost. I am no longer Brandi, I am Hayden's Mom healing him from autism. All the things I use to enjoy have went to the way side.
I need to find balance and I have no clue how. How do I stop my obsessive compulsive behavior towards autism?? Hayden is doing so well and with out a doubt in my mind is going to live a productive happy life. I feel like I need a twelve step program to detox from being so consumed with Hayden's illness. Why can't I just let go and relax?
I need to make time and re-connect with myself and my husband. I have put us on hold and focused every bit of energy I have into my kids. I feel that I would be a better Mom if I would take time for myself and strengthen my relationship with my husband. I want my kids to know the "real"me not the crazy lady obsessed with autism. I want them to know how much I love and value their father and set a positive example of a healthy relationship.
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