What an amazing week Team Hayden and I had :) We had the fabulously amazing Julie Sando from Autistically Inclined (http://www.autisticallyinclined.com) in our home for 3 days to work with all of us.
I was a little nervous about her coming this week as Monday was a super full moon, Sunday night I gave Hayden his GcMAF, and Hayden had not had much therapy the past three weeks. A wise friend reminded me that what ever I am meant to get this week I will get no matter what is going on :) Boy was she right!!!
Prior to Julie coming I had been having some issues come up in Hayden's therapy program that I was unsuccessful at solving. Hayden had become more autistic in his therapy room than out of it. There were several theories as to why Hayden had become more exclusive in the therapy room. One was that we were not exciting enough (I tossed that one out pretty much right away.....if anyone has seen me in the playroom or our team you know that is NOT the answer). The next was that he was using that time to take care of himself so he could be more *present* in the real world. The final one was my own theory........Hayden knows that in his therapy room he does not have to work hardly at all for us to be with him and doing what he wants. I was getting to the point of not wanting to do therapy anymore. I was run down, exhausted, out of ideas, and plan old burnt out.
This is where Julie comes in :) I had scheduled her to come and work with us back in March when I began to be challenged by what Hayden was doing in the therapy room vs. outside the therapy room. I had spoke with a few other families that had used Julie and Natural Play therapy and how she did things differently from our current program. I was not completely sold until after I talked with Julie and started trying out some of her techniques. That's when it felt *right* and I booked our outreach :)
I have NEVER felt so at ease with someone that I hardly knew in my home. Julie was like a friend that you had not seen in a few years but you pick up right where you left off. It was never weird or awkward and I didn't feel pressured to stay on a schedule and doing some thing every minute she was here. It was natural, it was real, and it fit our family.
The first day Julie was here she came to story time at the library with us. I wanted her input on how I could really maximize this time. There are also time that I feel really awkward and not sure if I am assisting too much or too little. What came of the library is that it really is time that I start giving Hayden more space and supporting him into finding his space. It was a bit of a challenge for me to just sit at the back of the room and Hayden really did great with it. Julie also brought it to my attention that Hayden was really like all the other kids with the exception of one time. The one time was when the librarian was giving instructions all the other kids turned and looked her. Hayden continued doing his work with out acknowledging her. I also wanted Julie's opinion if Hayden seemed to be stressed in any way in this environment. The answer was no :) She thought that it was a really good program for us to attend and that Hayden seemed as comfortable as the other children. Story time is for 3-6 year olds. Julie wanted to see what Hayden would do with an older group of kids. We choose a school aged program to attend later in the week. It was later in the day but over all Hayden was successful and happy to be there. Hayden really studied and watched the other children at this program.
That is one thing that I have really seen an increase out of Hayden this week. I don't know if it is because of Julie, if I am more aware, or that Hayden is changing but he really watched others more this week. Particularly older children :) Julie really reminded me and educated me that children learn from watching others.....what is modeled for them. That is how all children learn! This is where one big change has come into our program this week.
When Hayden is independently playing (Hayden no longer does repetitious behaviors with his toys, he really is just playing) with his toys we no longer try to do exactly what he is doing with a similar toy in easy eye contact range. Instead we take this time to recharge and deepen. Hayden can choose to do independent play when he wants. We are now going to take this time to play a game or do an activity of our choice on our own. We are going to use this time to model things we want to teach Hayden or share things we like with him. How EXCITING!!! This technique has been a big hit so far!!!!
Julie also aided me in developing new goals for Hayden. This was really an amazing, awesome, freeing experience. I picked goals for Hayden that are important to me. One of them being Hayden become more self sufficient....putting shoes away with out prompting, picking up his laundry, and watering the dog twice a day. Then the big change came.....our team will each have their own individual goals for Hayden. This concept is really exciting to me! Hayden's team was equally excited about choosing their own goals.
We had a team meeting while Julie was here to present the new ideas, educate, and answer questions. Julie helped each team member pick new goals, choose activities that they want to teach Hayden, and ideas on how to go about sharing them with him. I really feel that each team member is super excited to share what they love with Hayden in such a bigger way.
The next big change in our program is that I will no longer be giving the team members feedback at the end of their session. What I will be doing is checking in and talking about what they thought of the session and learning from them. I no longer feel that I have to have such a strong role in talking about the session and look for points that should be changed or improved on.
There were so many incredible moments this week!! I am sure that I have left out several :)
The final one that I want to share has really nothing to do with my family directly but my community. I asked Julie a couple of months ago if she would give a free inservice to my community about what she does and give them techniques they can take home and use. Julie said yes in such a big exciting way. There was about 15 people at the in-service. The majority of the people that came were early intervention people. I also want to give a shout out to Hayden's future teacher and assistant teacher for coming (so excited you were there). The in-service went way, way, way better than I ever imagined!!! Julie rocked it, the people rocked it.....pure love, genuine, excitement, and energy to help the autism community. I have never experienced such uplifting vibes in one room (besides at Son-Rise) that took place in that room. Really mind blowing!!! I had a hard time going to sleep that night from all the exciting energy :)
For the first time in 7 months I am really excited and pumped about my son's therapy program. What we are doing feels so pure, real, and it fits us. If it ever does not fit us I can change it :) I can't help to feel like the end is so, so close for us!!
Love you Julie Sando!!
Friday, June 28, 2013
Sunday, June 9, 2013
Loving our Bubble...
I live in a bubble................There I said it!!! I feel that admitting you have something you want to change is the first step to changing. So here I am ready to break out of the bubble I have built for my family since Hayden was diagnosed with severe autism in February of 2010.
I am sure you are wondering what the heck I mean by a bubble. Well, hold your horse's and I will tell you. My bubble was built by me and has grown bigger and bigger over the years. When I think of our bubble I think of it as a safe, loving, non-judgemental environment where we are free to be who we want. It is where I don't have to deal with others giving us strange looks or judging me on my parenting or non-traditional treatments for my son. I don't have to explain anything to anyone. I don't have to listen to people whine about the weather or that they have to do laundry and run errands for the day. I have created an environment where we pretty much go with the flow and make the best out of what we have. It is also an environment that my children are celebrated and cherished (well most days.....somedays I want to lock them in the closet inside our happy bubble).
It amazes me how much I have withdrawn from society and checked out of life while aiding in Hayden's recovery. I have choose to stay away from negative people. I have choose to not watch the news as I allow it to depress me. I have choose to not initiate play dates and activities in fear of being judged or have people look at my son strangely. I stay in my bubble because I don't want people to see that I am really not as strong as I make myself out to be. I only want people to see my good days. I only want people to see Hayden's good days. I also stay in my bubble because I feel like I have nothing in common with anyone. I have a hard time relating to people these days. I can not stand talking to someone and they complain about doing laundry or that their kid has a cold. I seriously want to tell them to shut the fuck up and walk away. Instead I find myself withdrawing and not connecting with people. I also do not want sympathy and people feeling sorry for me and my children.
What does all that I said above have in common????? It is all my beliefs and judgements!! The amazing thing about all of that about being in my bubble is that it is MY beliefs and judgements and I have the power to change those beliefs :)
The truth is everyone can have an opinion but it is up to me what I do with their opinion. I know that I am doing my best. I really, really, really know that I am doing my best every single day. I know that the day may not go as planned but it still a day that I get to choose if I want to love and make the best of it. It's my choice. I have a choice in what I want every single day. I have the choice to change my beliefs if I feel they are not serving me.
So how does being in my bubble aka staying home and not connecting with people I do not choose to invite into my bubble serve me? Wow, I am impressed that I am asking myself that question!! Well, I think I use it to protect myself but when I really think about it what am I protecting myself? Am I protecting myself from judgements?? Honestly why do I care or is that person looking at me strangely even judging my?? I am living my life for myself, no one else but myself.
So I am ready to break free from my bubble and the judgements that come with it. I honestly have been working on it. We have been going to story time at the local library since January and I have been working hard at engaging in conversation with the other families. I signed both kids up for swim lessons this next term and choose not to say that Hayden has / had autism. I choose not to say anything because his autism doesn't really effect him anymore and I want to stop hiding behind the autism. The kids are both going to school in the fall. I have been trying to set up play dates although it seems all my old friends are gone and have moved on. Which I am not calling anyone out with this. It is what it is and I feel that I have been missing for the last several years so I don't blame you one bit.
If anyone wants to get together let me know! I have popped my bubble and from this day forward I want to be an active part in society :)
An update on Hayden: He is doing amazing :) I am little nervous for the super full moon that is coming on June 23rd but I know we will be fine. Hayden continues to make gains every day and surprises me every day. This morning as I was getting ready to leave for work Hayden sat in my lap for a couple minutes. I asked him what he did at Grammie's yesterday and he said, "I had snacks." I asked, "What kind of snack did you have?" Hayden answered, " I had a strawberry." I then said, "Did you have anything else?" Hayden said, "Ummm........(while taping his finger on lips) a blueberry." It was seriously the cutest thing ever!! Tapping his little finger on his lips while he was thinking :) He then went on to tell me that he swam for a really long time. LOVE him!!!
I am sure you are wondering what the heck I mean by a bubble. Well, hold your horse's and I will tell you. My bubble was built by me and has grown bigger and bigger over the years. When I think of our bubble I think of it as a safe, loving, non-judgemental environment where we are free to be who we want. It is where I don't have to deal with others giving us strange looks or judging me on my parenting or non-traditional treatments for my son. I don't have to explain anything to anyone. I don't have to listen to people whine about the weather or that they have to do laundry and run errands for the day. I have created an environment where we pretty much go with the flow and make the best out of what we have. It is also an environment that my children are celebrated and cherished (well most days.....somedays I want to lock them in the closet inside our happy bubble).
It amazes me how much I have withdrawn from society and checked out of life while aiding in Hayden's recovery. I have choose to stay away from negative people. I have choose to not watch the news as I allow it to depress me. I have choose to not initiate play dates and activities in fear of being judged or have people look at my son strangely. I stay in my bubble because I don't want people to see that I am really not as strong as I make myself out to be. I only want people to see my good days. I only want people to see Hayden's good days. I also stay in my bubble because I feel like I have nothing in common with anyone. I have a hard time relating to people these days. I can not stand talking to someone and they complain about doing laundry or that their kid has a cold. I seriously want to tell them to shut the fuck up and walk away. Instead I find myself withdrawing and not connecting with people. I also do not want sympathy and people feeling sorry for me and my children.
What does all that I said above have in common????? It is all my beliefs and judgements!! The amazing thing about all of that about being in my bubble is that it is MY beliefs and judgements and I have the power to change those beliefs :)
The truth is everyone can have an opinion but it is up to me what I do with their opinion. I know that I am doing my best. I really, really, really know that I am doing my best every single day. I know that the day may not go as planned but it still a day that I get to choose if I want to love and make the best of it. It's my choice. I have a choice in what I want every single day. I have the choice to change my beliefs if I feel they are not serving me.
So how does being in my bubble aka staying home and not connecting with people I do not choose to invite into my bubble serve me? Wow, I am impressed that I am asking myself that question!! Well, I think I use it to protect myself but when I really think about it what am I protecting myself? Am I protecting myself from judgements?? Honestly why do I care or is that person looking at me strangely even judging my?? I am living my life for myself, no one else but myself.
So I am ready to break free from my bubble and the judgements that come with it. I honestly have been working on it. We have been going to story time at the local library since January and I have been working hard at engaging in conversation with the other families. I signed both kids up for swim lessons this next term and choose not to say that Hayden has / had autism. I choose not to say anything because his autism doesn't really effect him anymore and I want to stop hiding behind the autism. The kids are both going to school in the fall. I have been trying to set up play dates although it seems all my old friends are gone and have moved on. Which I am not calling anyone out with this. It is what it is and I feel that I have been missing for the last several years so I don't blame you one bit.
If anyone wants to get together let me know! I have popped my bubble and from this day forward I want to be an active part in society :)
An update on Hayden: He is doing amazing :) I am little nervous for the super full moon that is coming on June 23rd but I know we will be fine. Hayden continues to make gains every day and surprises me every day. This morning as I was getting ready to leave for work Hayden sat in my lap for a couple minutes. I asked him what he did at Grammie's yesterday and he said, "I had snacks." I asked, "What kind of snack did you have?" Hayden answered, " I had a strawberry." I then said, "Did you have anything else?" Hayden said, "Ummm........(while taping his finger on lips) a blueberry." It was seriously the cutest thing ever!! Tapping his little finger on his lips while he was thinking :) He then went on to tell me that he swam for a really long time. LOVE him!!!
Saturday, May 18, 2013
A lot has happened in two years.......
What a whirlwind of events the past seven days have been!! I came to the conclusion that Hayden is ready for school and would like him to start in the fall. WOW.....this is a GIGANTIC step for all of us!!
Last week I took Ruby for a interview at the local Montessori school and I also had to do an in class observation. As I was observing the flow of the classroom I was thinking about how Hayden and Ruby would be in this environment. I felt that Ruby would do exceptionally well and felt so super excited that she would be starting this journey. My sweet and sassy princess is ready for school and what a beautiful enriching environment this will be for her I thought to myself. I had very different feelings thinking of Hayden.
The classroom had a busy buzz to it. There was lots of movement and lots of children (12) moving around and doing their work. In no means did I feel this was a bad thing I just felt that this would be highly overwhelming for my son with autism. What I failed to remember in that moment is that Hayden no longer has sensory issues. Noises, movements, stuff, and smells no longer overstimulate him.
I talked with Brandon about it and decided to call a few other schools and see what they had available. In the past 3 years I have visited 15 different schools in a 50 mile radius. Ultimately Oak Farm Montessori is where I wanted Hayden to go to school at. If he was not ready to attend this school now my hope was that in the future he will be ready. When I talked with Brandon further about it we decided that we really didn't know how Hayden will do until we try. WOW.......so I set up a classroom visit for Hayden.
I must admit I was having some anxiety about leaving Hayden in a new setting with new people. I have not left Hayden in a new setting in almost 2 years now. I really don't leave Hayden with anyone except his Daddy, Grammie, Grandma, and cousin Kelsie. Those times I do leave him are few and far between. Maybe once every 6 months or so. For those of you that don't know me I am a CONTROL FREAK, especially when it comes to Hayden. So leaving Hayden in a classroom environment was a HUGE challenge for me.
The first day Hayden went for his classroom visit. I prepared him by telling him what was going to take place. We were first going to the lobby to wait for instructions. We then were going to walk to his classroom at 9am together. I explained that I would be joining him in the classroom until 9:30am and then I would have to leave to do my work while he stayed and did his work. I then explained that I would be back at 10:30 to pick him up. Hayden was adamant that he did not want to go to school.
I decided that if Hayden was showing signs of stress at anytime that we would end the site visit. Something magical happened as we pulled into the campus of school. Hayden had a big smile on his face and started signing a song he use to sing in class when attended this school two years ago. I must admit this was a HUGE sigh of relief on my part!! I then started tearing up. It was a bit of a challenge for me not to go into a full on tears of joy sob fest.
From that point on Hayden was cool as a cucumber. He did not cry once, he did not tantrum, and he did not exhibit any signs of being stressed. I walked him to his classroom. He went in a quickly adjusted to the surroundings. I sat quietly and observed him for 30 minutes. I bet you all want to know what I observed.............
Well observed a happy, typical child adjusting well to a new environment. He followed directions well from the teacher, he smiled at the other children, he observed the other children, he got work out, he put work away, and he told the teacher what he wanted to do. I was SHOCKED and in tears!! It then was time for me to leave. I simply told Hayden I was leaving and pointed to the clock and told him I would be back at 10:30 to pick him up. I heard him say Mommy but that was it. No scream, no chasing after me, no death grip hold on me. Hayden was fine :)
When I went to pick him up the teacher said, "Hayden followed directions well, was happy, he was calm, interacted with other children well, and only asked for you a couple times." WOW.....REALLY????
I told Hayden how proud I was of him for doing his best. He had a look on his face like "Yep, I rock and totally did this on my own."
When I took Hayden back for the second day to a different classroom (the one he will be in next year) the plan was for me to just drop Hayden off at the door and leave. WHAT??? Yeah, I did not see this going well. Guess what.........Hayden walked right in and I left. No crying, no death grip on me......he just walked in like he owned the place. I stood at the door in shock for a few seconds, talked with his teacher a bit, and then walked away.
I was able to go and observe through the observation window. Hayden asked for me a few times but over all did great. His teacher took him by the hand a few times to show him around and Hayden was completely cool with that. I then picked up Hayden and it was like he had been going to school all his life.
Hayden's previous teachers came to peek in on him. When I spoke with them they had tears in their eyes and were so happy for us :)
Hard to believe that two years ago Hayden was not accepted at this school because it was not a good fit for him. Hayden being turned away was one of the best things to ever happen to us. It is what pushed me to look for something else. That is when I found Son-Rise.
REALLY........REALLY is this happening?????? Did my severely autistic son just go to school in a typical Montessori classroom on his own with no issues????? NO.....you know why NO........because I don't have a severely autistic son anymore. I don't even have an autistic son anymore. What I have is an amazing little boy that has recovered from autism!! Do we still have challenges.....YES! Is Hayden going to recover from those challenges......YES!
So here is to a new adventure for our family........Hayden and Ruby will both be starting school in the fall :) I am going to do my best to NOT stalk them.
GOOD BYE AUTISM!!!!!!
Last week I took Ruby for a interview at the local Montessori school and I also had to do an in class observation. As I was observing the flow of the classroom I was thinking about how Hayden and Ruby would be in this environment. I felt that Ruby would do exceptionally well and felt so super excited that she would be starting this journey. My sweet and sassy princess is ready for school and what a beautiful enriching environment this will be for her I thought to myself. I had very different feelings thinking of Hayden.
The classroom had a busy buzz to it. There was lots of movement and lots of children (12) moving around and doing their work. In no means did I feel this was a bad thing I just felt that this would be highly overwhelming for my son with autism. What I failed to remember in that moment is that Hayden no longer has sensory issues. Noises, movements, stuff, and smells no longer overstimulate him.
I talked with Brandon about it and decided to call a few other schools and see what they had available. In the past 3 years I have visited 15 different schools in a 50 mile radius. Ultimately Oak Farm Montessori is where I wanted Hayden to go to school at. If he was not ready to attend this school now my hope was that in the future he will be ready. When I talked with Brandon further about it we decided that we really didn't know how Hayden will do until we try. WOW.......so I set up a classroom visit for Hayden.
I must admit I was having some anxiety about leaving Hayden in a new setting with new people. I have not left Hayden in a new setting in almost 2 years now. I really don't leave Hayden with anyone except his Daddy, Grammie, Grandma, and cousin Kelsie. Those times I do leave him are few and far between. Maybe once every 6 months or so. For those of you that don't know me I am a CONTROL FREAK, especially when it comes to Hayden. So leaving Hayden in a classroom environment was a HUGE challenge for me.
The first day Hayden went for his classroom visit. I prepared him by telling him what was going to take place. We were first going to the lobby to wait for instructions. We then were going to walk to his classroom at 9am together. I explained that I would be joining him in the classroom until 9:30am and then I would have to leave to do my work while he stayed and did his work. I then explained that I would be back at 10:30 to pick him up. Hayden was adamant that he did not want to go to school.
I decided that if Hayden was showing signs of stress at anytime that we would end the site visit. Something magical happened as we pulled into the campus of school. Hayden had a big smile on his face and started signing a song he use to sing in class when attended this school two years ago. I must admit this was a HUGE sigh of relief on my part!! I then started tearing up. It was a bit of a challenge for me not to go into a full on tears of joy sob fest.
From that point on Hayden was cool as a cucumber. He did not cry once, he did not tantrum, and he did not exhibit any signs of being stressed. I walked him to his classroom. He went in a quickly adjusted to the surroundings. I sat quietly and observed him for 30 minutes. I bet you all want to know what I observed.............
Well observed a happy, typical child adjusting well to a new environment. He followed directions well from the teacher, he smiled at the other children, he observed the other children, he got work out, he put work away, and he told the teacher what he wanted to do. I was SHOCKED and in tears!! It then was time for me to leave. I simply told Hayden I was leaving and pointed to the clock and told him I would be back at 10:30 to pick him up. I heard him say Mommy but that was it. No scream, no chasing after me, no death grip hold on me. Hayden was fine :)
When I went to pick him up the teacher said, "Hayden followed directions well, was happy, he was calm, interacted with other children well, and only asked for you a couple times." WOW.....REALLY????
I told Hayden how proud I was of him for doing his best. He had a look on his face like "Yep, I rock and totally did this on my own."
When I took Hayden back for the second day to a different classroom (the one he will be in next year) the plan was for me to just drop Hayden off at the door and leave. WHAT??? Yeah, I did not see this going well. Guess what.........Hayden walked right in and I left. No crying, no death grip on me......he just walked in like he owned the place. I stood at the door in shock for a few seconds, talked with his teacher a bit, and then walked away.
I was able to go and observe through the observation window. Hayden asked for me a few times but over all did great. His teacher took him by the hand a few times to show him around and Hayden was completely cool with that. I then picked up Hayden and it was like he had been going to school all his life.
Hayden's previous teachers came to peek in on him. When I spoke with them they had tears in their eyes and were so happy for us :)
Hard to believe that two years ago Hayden was not accepted at this school because it was not a good fit for him. Hayden being turned away was one of the best things to ever happen to us. It is what pushed me to look for something else. That is when I found Son-Rise.
REALLY........REALLY is this happening?????? Did my severely autistic son just go to school in a typical Montessori classroom on his own with no issues????? NO.....you know why NO........because I don't have a severely autistic son anymore. I don't even have an autistic son anymore. What I have is an amazing little boy that has recovered from autism!! Do we still have challenges.....YES! Is Hayden going to recover from those challenges......YES!
So here is to a new adventure for our family........Hayden and Ruby will both be starting school in the fall :) I am going to do my best to NOT stalk them.
GOOD BYE AUTISM!!!!!!
Sunday, May 5, 2013
F~R~E~E~D~O~M
Freedom.....Freedom........Freedom.......Freedom Are you hearing that song from the annoying commercial playing singing the words freedom???? I know I sure do. That is totally and completely what I am feeling FREEDOM......FREEDOM that I have not allowed myself to feel or have since Hayden was diagnosed with severe autism three years ago.
I feel free to walk my own path and define our lives. It feels so liberating to empower myself to live life the way I want and make time for the activities I want to do with my family.
We have been running a totally, completely, life changing, amazing therapy program out of our home for our son Hayden for the past 22 months. I seriously love this program and highly recommend it to anyone that has a special needs child.
The least amount of hours Hayden has spent in therapy a week is 20 and the peak amount of hours has been 65 hours a week. I have done anywhere from 10-25 hours a week of the one-to-one therapy with Hayden myself. I also apply all the principles of the therapy to our lives when Hayden is not in his therapy room as well. I also am the team leader of his program. What does being the team leader look like.......I coordinate the therapy schedule, for each person that works with Hayden I observe at least 15 minutes of the session, provide 15-20 minutes of feedback after each session, I provide support to our team members, coordinate and run the 2 hour monthly team meeting, complete monthly evaluations based on my observations and session evaluation forms that team members fill out, organize the session evaluation forms, define monthly goals, make activities to do in the playroom, clean the playroom, and rotate games in and out of the playroom shelf. It's a full time job that I seriously love. I love being the leader of Hayden's team. I love working with Hayden. I truly, deeply, LOVE....LOVE.....LOVE being in the playroom with him. It is the one point in my day that nothing else matters. It's just me and my little man having a blast. If you want to see me playing with my little man check out this YouTube video:Brandi and Hayden playing in Son-Rise
The thing is I am tired and overwhelmed the majority of days. I also work 12.5 hour shifts on Saturday and Sunday, prepare all of our food from scratch (no processed foods at all). I coordinate Hayden's supplement schedule and administer his supplements which is often something every 1/2 hour to an hour of dosing. I care for our home, spend time with my princess, research autism, and provide support to other autism families.
It is often 6pm and I am feeling light headed and have to really think about if I ate or not that day. Often times the answer is no. All I have had for the day nutrient wise is a glass of fresh juice in the morning and a cup of coffee. Seriously....I am too busy to eat. I am too busy to sit down and just breath. WHAT THE HELL!!!!!
I often find myself getting frustrated at my husband because he is not helping me enough. Brandon helps, he does his best, and as he often says "I do more than most". He does, he truly does......it's just not enough. Wow, I am in tears as I type and think about this. In all honesty I don't think if we hired someone 40 hours a week to be my personal assistant would be enough help. Brandon could not possibly help me enough...........I have set ourselves up to fail.
Our schedule, to do list is running our lives!!! I am changing that......I am changing that......I am changing that!!!!!! I AM REGAINING OUR FREEDOM :)
What does this new found FREEDOM look like???? Well, it still in the works and won't officially begin for 4 more weeks (that is when our last student finishes her externship in Hayden's program).
1) We are taking Hayden's therapy program down to 20 hours a week this summer. I can't even tell you how freaking good this feels to say. That's right we are going to rock the therapy room 20 hours a week this summer. I am going to use this freedom for days at the pool, playing in Grammie's garden, weekly trips to the zoo, trips to the splash pads, walks, bicycle rides, trips to the playgrounds. I am going to spend time with my friends, my nieces and nephews, and hopefully make new friends. I have lost several over the past couple years. The kids are going to have playmates. We are going to run around and be FREE and celebrate FEEDOM.
2) I am going to leave the house once a week with out the kids for purposes other than going to work or doctor appointments.
3) I am not going to worry about finding a school for Hayden or what we are going to do about school. When Hayden is ready I will know. When I know I will find an amazing place for him to continue to learn and develop.
4) I am totally tweaking our therapy program with the help and guidance of the fabulous Julie Sando. Hayden's therapy program will now fit our family vs. us fitting the therapy program.
5) I am going to live and have the FREEDOM to adjust, tweak, and change whatever I want to change.
So here is to life, here is to living life, here is to loving life, and here is to the FREEDOM of living the life YOU want :)
XOXO,
Brandi
I feel free to walk my own path and define our lives. It feels so liberating to empower myself to live life the way I want and make time for the activities I want to do with my family.
We have been running a totally, completely, life changing, amazing therapy program out of our home for our son Hayden for the past 22 months. I seriously love this program and highly recommend it to anyone that has a special needs child.
The least amount of hours Hayden has spent in therapy a week is 20 and the peak amount of hours has been 65 hours a week. I have done anywhere from 10-25 hours a week of the one-to-one therapy with Hayden myself. I also apply all the principles of the therapy to our lives when Hayden is not in his therapy room as well. I also am the team leader of his program. What does being the team leader look like.......I coordinate the therapy schedule, for each person that works with Hayden I observe at least 15 minutes of the session, provide 15-20 minutes of feedback after each session, I provide support to our team members, coordinate and run the 2 hour monthly team meeting, complete monthly evaluations based on my observations and session evaluation forms that team members fill out, organize the session evaluation forms, define monthly goals, make activities to do in the playroom, clean the playroom, and rotate games in and out of the playroom shelf. It's a full time job that I seriously love. I love being the leader of Hayden's team. I love working with Hayden. I truly, deeply, LOVE....LOVE.....LOVE being in the playroom with him. It is the one point in my day that nothing else matters. It's just me and my little man having a blast. If you want to see me playing with my little man check out this YouTube video:Brandi and Hayden playing in Son-Rise
The thing is I am tired and overwhelmed the majority of days. I also work 12.5 hour shifts on Saturday and Sunday, prepare all of our food from scratch (no processed foods at all). I coordinate Hayden's supplement schedule and administer his supplements which is often something every 1/2 hour to an hour of dosing. I care for our home, spend time with my princess, research autism, and provide support to other autism families.
It is often 6pm and I am feeling light headed and have to really think about if I ate or not that day. Often times the answer is no. All I have had for the day nutrient wise is a glass of fresh juice in the morning and a cup of coffee. Seriously....I am too busy to eat. I am too busy to sit down and just breath. WHAT THE HELL!!!!!
I often find myself getting frustrated at my husband because he is not helping me enough. Brandon helps, he does his best, and as he often says "I do more than most". He does, he truly does......it's just not enough. Wow, I am in tears as I type and think about this. In all honesty I don't think if we hired someone 40 hours a week to be my personal assistant would be enough help. Brandon could not possibly help me enough...........I have set ourselves up to fail.
Our schedule, to do list is running our lives!!! I am changing that......I am changing that......I am changing that!!!!!! I AM REGAINING OUR FREEDOM :)
What does this new found FREEDOM look like???? Well, it still in the works and won't officially begin for 4 more weeks (that is when our last student finishes her externship in Hayden's program).
1) We are taking Hayden's therapy program down to 20 hours a week this summer. I can't even tell you how freaking good this feels to say. That's right we are going to rock the therapy room 20 hours a week this summer. I am going to use this freedom for days at the pool, playing in Grammie's garden, weekly trips to the zoo, trips to the splash pads, walks, bicycle rides, trips to the playgrounds. I am going to spend time with my friends, my nieces and nephews, and hopefully make new friends. I have lost several over the past couple years. The kids are going to have playmates. We are going to run around and be FREE and celebrate FEEDOM.
2) I am going to leave the house once a week with out the kids for purposes other than going to work or doctor appointments.
3) I am not going to worry about finding a school for Hayden or what we are going to do about school. When Hayden is ready I will know. When I know I will find an amazing place for him to continue to learn and develop.
4) I am totally tweaking our therapy program with the help and guidance of the fabulous Julie Sando. Hayden's therapy program will now fit our family vs. us fitting the therapy program.
5) I am going to live and have the FREEDOM to adjust, tweak, and change whatever I want to change.
So here is to life, here is to living life, here is to loving life, and here is to the FREEDOM of living the life YOU want :)
XOXO,
Brandi
Tuesday, April 30, 2013
Hayden is a recovering stud muffin :)
Well, I started the day with nothing on our agenda except operation disinfect the house and rest. I have been sick the last couple days and the kids had runny noses. I canceled therapy for the day because honestly I was tired and I knew Brandon was going to be gone all day. I just didn't have it in me to be a team leader, chief, Mom, housewife, and doctor, for the day.
I must say it was super strange for me to have nothing to do but disinfect the house, prepare meals for the kids, care for the kids, give Hayden his supplements, and just chill. STRANGE FEELING!!! I was not feeling up to parr form my illness but decided to take advantage of the day.
The kids played well with each other for about 2 hours and I really got a lot done. I was shocked!! Did you read that.......my kids played TOGETHER for 2 hours straight. Holy Crap!!! I still can't believe how much I got accomplished. I started thinking hmmm........it sure looks nice outside I think it would be a perfect day for a trip to the zoo.
So after lunch we packed up the car and away the kids and I went for our first zoo trip of the season. Hayden told me he wanted to see the sharks, jelly fish, fish, and lions. He also told me he wanted to ride the boats and carousel. Hayden walked the entire zoo, followed directions, talked about what he was seeing, and played with other children. He was very focused on seeing what he wanted to see which was fine. Hayden was totally open to seeing everything else once his to do list was done.
I must say it was a magical trip to the zoo. The real magic happened after the zoo when we went to Red Robin for dinner. When the waitress asked Hayden what he wanted for dinner he looked her in the eyes and said, "chicken on a stick and lorax trees (broccoli)." Hell YES Hayden!!! He patiently waited for his food and played with Ruby and I at the table. When we left Hayden waved at people and said, "bye" as we walked by them. We went to get balloons as we left. The hostess asked Hayden what color of balloon he wanted and he looked right at here and said, "blue please." He even gave her this flirty grin he has. She got the balloon and went to tie it on Hayden's wrist. I thought.......oh, this is not going to be good but wanted to see what Hayden did. Hayden stuck out his arm for her to tie it on to him. He than said, "thanks." I seriously started to sob. I couldn't believe my kid that was completely non-verbal, severe sensory issues, no eye contact, tantrumed 90% of the day and night just stuck out his arm and said thanks like he had been doing it all his life.
Yep, I think we are closing the door on autism soon :)
I must say it was super strange for me to have nothing to do but disinfect the house, prepare meals for the kids, care for the kids, give Hayden his supplements, and just chill. STRANGE FEELING!!! I was not feeling up to parr form my illness but decided to take advantage of the day.
The kids played well with each other for about 2 hours and I really got a lot done. I was shocked!! Did you read that.......my kids played TOGETHER for 2 hours straight. Holy Crap!!! I still can't believe how much I got accomplished. I started thinking hmmm........it sure looks nice outside I think it would be a perfect day for a trip to the zoo.
So after lunch we packed up the car and away the kids and I went for our first zoo trip of the season. Hayden told me he wanted to see the sharks, jelly fish, fish, and lions. He also told me he wanted to ride the boats and carousel. Hayden walked the entire zoo, followed directions, talked about what he was seeing, and played with other children. He was very focused on seeing what he wanted to see which was fine. Hayden was totally open to seeing everything else once his to do list was done.
I must say it was a magical trip to the zoo. The real magic happened after the zoo when we went to Red Robin for dinner. When the waitress asked Hayden what he wanted for dinner he looked her in the eyes and said, "chicken on a stick and lorax trees (broccoli)." Hell YES Hayden!!! He patiently waited for his food and played with Ruby and I at the table. When we left Hayden waved at people and said, "bye" as we walked by them. We went to get balloons as we left. The hostess asked Hayden what color of balloon he wanted and he looked right at here and said, "blue please." He even gave her this flirty grin he has. She got the balloon and went to tie it on Hayden's wrist. I thought.......oh, this is not going to be good but wanted to see what Hayden did. Hayden stuck out his arm for her to tie it on to him. He than said, "thanks." I seriously started to sob. I couldn't believe my kid that was completely non-verbal, severe sensory issues, no eye contact, tantrumed 90% of the day and night just stuck out his arm and said thanks like he had been doing it all his life.
Yep, I think we are closing the door on autism soon :)
Thursday, April 25, 2013
I'm coming Mom...............ahhhh our journey to joyous teeth brushing :)
This morning was one of those moments that took my breath away as I reflected on our journey with teeth brushing. From the age of 18 months until about 6 months ago Hayden did not handle getting his teeth brushed at all. He would scream, kick, bite, throw his tooth brush away to avoid teeth brushing. Some might say that he was just being defiant. The truth is teeth brushing was a painful experience for Hayden. A child with sensory issues can not cope with "tickling / poking" the tooth brush give input with. The way Hayden acted you would think we were brushing his teeth with razor blades and a chisel.
In the early days (prior to Son-Rise) we would just hold Hayden down and brush his teeth. I would sing the alphabet song while brushing his teeth so he would know when I was finishing the horrific process for him. We tried different toothbrushes and tooth paste. Nothing seemed to help. That is until I attended the Son-Rise Start Up.
I realized that if I was going to help Hayden gain a love for tooth brushing I was going to have to let go of my need to brush his teeth and stop forcing him. Honestly, this was hard for me to let go of!!! Hayden takes an inhaled steroid for his asthma that if you don't brush or rinse your teeth afterwards it can promote yeast growth. Yeast is / was one thing that Hayden does not need anymore of. The second fear that I examined was that he would have horrific nasty teeth which would cause even more illness. BLAH!!!
Slowly but surely I came to peace with those beliefs and came up with a plan on how to teach Hayden how much fun and important oral health it. I let go of NEEDING him to brushing his to WANTING him to brush his teeth.
I started the process by giving Hayden control of his tooth brush. If he said, "NO" when I presented his tooth brush I happily put it on the counter. I would then get my tooth brush and have the most amazing time brushing my teeth. I modeled for him what a joy tooth brushing was. I also explained afterwards how wonderful it felt to get the bugs off my teeth and that brushing helped keep me healthy. I even got Ruby involved with the process. She also enjoys teeth brushing :)
I made activities in the playroom about teeth brushing. Hayden's favorite was brushing his cars teeth. I also gave Hayden opportunities to help brush my own teeth. Last summer Hayden went to the bathroom and came out with his tooth brush and joyfully brushed Grammie's teeth. Grammie was a good sport and cheered Hayden on.
Something else I did was celebrate Hayden every time he touched, looked, or talked about his tooth brush. Once he got comfortable with the tooth brush I would put the tooth paste on it, hand it to him, and walk away. Usually Hayden would come to where I was and I would cheer him on. I started offering to brush his teeth after him to make sure all the yucky bugs were off. Slowly but surely he has been okay with me increasing the time that I brush. I honestly feel that most days Hayden gets a good teeth brushing.
So fast forward to this morning. Hayden's first team member was here and he was in the kitchen talking with her. I was in the bathroom fixing Ruby's hair. I called out, "Hayden come do puffy fish (inhaler) and brush your teeth." I heard him head down the hall way and then he said................."I'M COMING MOM." FREAKING AMAZING!!!!! He then happily brushed his teeth :)
I am one proud Mom......still can't believe he said, "I'm coming Mom." WOW....WOW.....WOW There are so many amazing elements to that sentence and action. WAY TO GO HAYDEN..............YOU TOTALLY AND COMPLETELY ROCK :)
In the early days (prior to Son-Rise) we would just hold Hayden down and brush his teeth. I would sing the alphabet song while brushing his teeth so he would know when I was finishing the horrific process for him. We tried different toothbrushes and tooth paste. Nothing seemed to help. That is until I attended the Son-Rise Start Up.
I realized that if I was going to help Hayden gain a love for tooth brushing I was going to have to let go of my need to brush his teeth and stop forcing him. Honestly, this was hard for me to let go of!!! Hayden takes an inhaled steroid for his asthma that if you don't brush or rinse your teeth afterwards it can promote yeast growth. Yeast is / was one thing that Hayden does not need anymore of. The second fear that I examined was that he would have horrific nasty teeth which would cause even more illness. BLAH!!!
Slowly but surely I came to peace with those beliefs and came up with a plan on how to teach Hayden how much fun and important oral health it. I let go of NEEDING him to brushing his to WANTING him to brush his teeth.
I started the process by giving Hayden control of his tooth brush. If he said, "NO" when I presented his tooth brush I happily put it on the counter. I would then get my tooth brush and have the most amazing time brushing my teeth. I modeled for him what a joy tooth brushing was. I also explained afterwards how wonderful it felt to get the bugs off my teeth and that brushing helped keep me healthy. I even got Ruby involved with the process. She also enjoys teeth brushing :)
I made activities in the playroom about teeth brushing. Hayden's favorite was brushing his cars teeth. I also gave Hayden opportunities to help brush my own teeth. Last summer Hayden went to the bathroom and came out with his tooth brush and joyfully brushed Grammie's teeth. Grammie was a good sport and cheered Hayden on.
Something else I did was celebrate Hayden every time he touched, looked, or talked about his tooth brush. Once he got comfortable with the tooth brush I would put the tooth paste on it, hand it to him, and walk away. Usually Hayden would come to where I was and I would cheer him on. I started offering to brush his teeth after him to make sure all the yucky bugs were off. Slowly but surely he has been okay with me increasing the time that I brush. I honestly feel that most days Hayden gets a good teeth brushing.
So fast forward to this morning. Hayden's first team member was here and he was in the kitchen talking with her. I was in the bathroom fixing Ruby's hair. I called out, "Hayden come do puffy fish (inhaler) and brush your teeth." I heard him head down the hall way and then he said................."I'M COMING MOM." FREAKING AMAZING!!!!! He then happily brushed his teeth :)
I am one proud Mom......still can't believe he said, "I'm coming Mom." WOW....WOW.....WOW There are so many amazing elements to that sentence and action. WAY TO GO HAYDEN..............YOU TOTALLY AND COMPLETELY ROCK :)
Saturday, April 13, 2013
Screw Awareness and Lighting it Up Blue..........................
As I am sure you are all aware that April is Autism Awareness Month. I have been asked by several hundred thousand people (okay, maybe not that many) if I had anything special planned for autism awareness month. Well here is my answer..............................HELL to the freaking NO!!! I am aware of autism 24/7, 365 days a year. I don't want a month to celebrate or help others be aware of autism. What I want is AUTISM ACTION and what I really mean is that I want AUTISM PREVENTION. That's right I said it...........PREVENT AUTISM!!!
STOP trusting the government, STOP trusting pharmaceutical companies, stop trusting physicians, and start doing your own research.
Did you know that we are one of the very few countries that not only allows GMO foods but protects the main supplier of GMO foods from legal action?
Did you know that physicians learn minimal to nothing about vaccinations in medical school? Hmm......so who do they learn from you ask???? FREAKING pharmaceutical representatives that are taking them boxes of chocolates and lunches with their "in-service." Hmm.....I don't know about you but when I make a purchase I don't just go to the supplier for information. I do my own research.
I can not even wrap by head around the hepatitis b vaccination. I mean, seriously!!! How many babies do you know that are having sex and shooting up with needles??? That is how hepatitis b is transmitted....blood and intercourse. Why the hell does a newborn who has NO immune system yet need to be vaccinated with hepatitis b at a few hours old??? What risk are they at??? GRRRR!!!!
Skip the antibiotics is another great prevention to autism. You don't need an antibiotic for every freaking sniffle, ear infection, or bacterial infection. So why the hell do doctors pass antibiotics out like candy??? 1) to shut you up and get you out of the office 2) $$$$$$$$$ Did you know that not only does the antibiotic kill the bad bacteria (if there was even bad bacteria in the first place) but it also kills your good bacteria too????? This actually weakens your immune system. Your body is designed to fight off infections, let it do it's job!!!
Have you looked at food labels lately???? It blows my mind all the food that has FREAKING sugar or high fructose corn syrup in it. Why the hell did the government just pass a law that allows aspartame to be added to milk with out labeling it???? I mean seriously........WHAT THE FUCK???? Yes, please add a shot of cancer causing shit to my milk said NO ONE EVER.
While I *celebrate* Autism Awareness every day of my current life I will NOT be lighting anything up blue. Autism Speaks in my opinion is worthless. Autism Speaks targets a lot of their funding to genetic research. Um, HELLO if autism was genetic related wouldn't he have a shit ton more autistic adults??? Autism Speaks also has huge salaries for their management team.
Here is some of Autism Speaks Statistics from 2010:
Geraldine Dawson, Chief Science Officer - Salary: $669,751
Mark Roithmayer, President - Salary: $400,413
Peter Bell, Executive Vice President - Salary: $265,981
Glenn Tringali, Executive Vice President - Salary: $255,256
Alison Tepper Singer, Executive Vice President - Salary: $201,942
Amount Spent on Travel: $2,873,667
Credit Card and Banking Fees: $989,344
Premiums: $1,452,807
Management Fees: $2,038,024
Advertising and Promotion: $2,108,778
Temporary Help: $718,686
Income: $65,826,829
GRANTS PAID OUT: $27,593,390
So don't buy Autism Speaks mercury filled blue light bulbs!!!!!!
I am walking, talking breathing Autism Action and will continue to for the rest of my life. My little guy is getting closer and closer to a full recovery from autism.
STOP trusting the government, STOP trusting pharmaceutical companies, stop trusting physicians, and start doing your own research.
Did you know that we are one of the very few countries that not only allows GMO foods but protects the main supplier of GMO foods from legal action?
Did you know that physicians learn minimal to nothing about vaccinations in medical school? Hmm......so who do they learn from you ask???? FREAKING pharmaceutical representatives that are taking them boxes of chocolates and lunches with their "in-service." Hmm.....I don't know about you but when I make a purchase I don't just go to the supplier for information. I do my own research.
I can not even wrap by head around the hepatitis b vaccination. I mean, seriously!!! How many babies do you know that are having sex and shooting up with needles??? That is how hepatitis b is transmitted....blood and intercourse. Why the hell does a newborn who has NO immune system yet need to be vaccinated with hepatitis b at a few hours old??? What risk are they at??? GRRRR!!!!
Skip the antibiotics is another great prevention to autism. You don't need an antibiotic for every freaking sniffle, ear infection, or bacterial infection. So why the hell do doctors pass antibiotics out like candy??? 1) to shut you up and get you out of the office 2) $$$$$$$$$ Did you know that not only does the antibiotic kill the bad bacteria (if there was even bad bacteria in the first place) but it also kills your good bacteria too????? This actually weakens your immune system. Your body is designed to fight off infections, let it do it's job!!!
Have you looked at food labels lately???? It blows my mind all the food that has FREAKING sugar or high fructose corn syrup in it. Why the hell did the government just pass a law that allows aspartame to be added to milk with out labeling it???? I mean seriously........WHAT THE FUCK???? Yes, please add a shot of cancer causing shit to my milk said NO ONE EVER.
While I *celebrate* Autism Awareness every day of my current life I will NOT be lighting anything up blue. Autism Speaks in my opinion is worthless. Autism Speaks targets a lot of their funding to genetic research. Um, HELLO if autism was genetic related wouldn't he have a shit ton more autistic adults??? Autism Speaks also has huge salaries for their management team.
Here is some of Autism Speaks Statistics from 2010:
Geraldine Dawson, Chief Science Officer - Salary: $669,751
Mark Roithmayer, President - Salary: $400,413
Peter Bell, Executive Vice President - Salary: $265,981
Glenn Tringali, Executive Vice President - Salary: $255,256
Alison Tepper Singer, Executive Vice President - Salary: $201,942
Amount Spent on Travel: $2,873,667
Credit Card and Banking Fees: $989,344
Premiums: $1,452,807
Management Fees: $2,038,024
Advertising and Promotion: $2,108,778
Temporary Help: $718,686
Income: $65,826,829
GRANTS PAID OUT: $27,593,390
So don't buy Autism Speaks mercury filled blue light bulbs!!!!!!
I am walking, talking breathing Autism Action and will continue to for the rest of my life. My little guy is getting closer and closer to a full recovery from autism.
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