As I suspected, I am feeling much less frustrated today. Sometimes the intensity of information and handling it can be quite overwhelming, but maybe it is not a bad thing to let you see this side of my life, so that if others process in the same manner, you will know what they are going through.
One of the "exercises" we have to do with Zach is something that makes me think of drawing imaginary cat whiskers on his face with our finger. You start at the outer edge of his cheek and work to the corner of his mouth. Today he was doing it to himself :) I am not sure if it works to do it yourself, but it is sort of neat to see him take an interest in it.
I plan on having the school incorporate one of his three exercise sessions into his day and actually having it written into his IEP. Lately I feel as if his IEP is not as meaningful as it should be. I don't see much growth working on what he has been doing and I really want to revamp it... I just wish I knew how. I am not sure the teacher, though a nice young woman, has a real vision for him and I feel as if we are treading water, going through the motions but not making any forward progress.
And, now... something I dread to have to tell you. But I must. We will have to limit Zachary's "screen time" due to the belief that computers and t.v. are stimulating the left side of his brain and not the right side of his brain. I know this is sort of a downer... for you all who helped to get the iPad for him and also for me. I have only ever heard good things about how it is so good for people with autism. But the principle behind Brain Balance is that in order for the brain to be balanced, the right side of his brain needs to "catch up" in order for the two sides to work together. Zach IS very good at the computer, as are many kids who have autism. This is because his left brain is so strong. This does not mean he won't be using it at all, rather that we will be using it to find things that he can use to stimulate his right brain... mostly music (low tones and slow music. I want to look into this because it is intriguing to me).
I also want to look into supplements, as these are not offered to people outside of the BB program, which seems a bit shortsighted to me. There are probably other things out there... so if you know of anything, let me know. Fish oil in a form that taste-sensitive individuals can handle would be a BIG one.
Finally, thank you, whoever might possibly be reading this, for caring enough to share this journey with us. None of us knows where it will take us in this life, but it is nice to know we don't walk alone. It is a beautiful day today, speaking of walks! So I hope you get to enjoy some sunshine as I know I will be!
Maria
PS later today Monica and I will be helping at Jason Runkle's benefit, one which helps to pay for his BB tuition. I am so blessed to be able to help. His mother is seeing tremendous results and THAT is a beautiful thing of which to be even a very very very small part. <3
Saturday, March 9, 2013
Thursday, March 7, 2013
Brain Balance Assessment
We had the 2 hour assessment review from Brain Balance today. It was fine while we were there, a lot of information. As simply as possible, the system uses the image of an iceberg (with many underlying layers that are unseen) to explain how a person develops. The very simplest of the things we develop (or should develop and then develop PAST) are primary reflexes. For those of you who have or have dealt with young babies you might recognize the terms rooting reflex, moro reflex, etc... which are the primary reflexes. There are other layers beneath but closer to the surface, and the top layers which people around us see, our academic ability and our behavior (those being the "tip of the iceberg" so you have to address the underlying layers as needed first).
Because Zach is so severely affected by his autism, it is believed that the root of his difficulties BEGINS with a lack of growing past all but one of 8 of the primary reflexes.
While in the office I was ok hearing these things, but now, as I sit here and try to write about it, I am brought to tears, which is probably not helped (well the TEARS are probably helped but I am not!) by my peri-menopausal PMS hormones (MUCH crazier than when I was younger). I am sorry if this is TMI for you, but it is simply a fact of life and I am trying to be transparent and honest. Where I am in life certainly plays a role in the way I process things. Remember when you were young and you thought you could conquer the world? I am so past that.
At this time the center feels the best course of action is a home program, because they do not deal with primary reflexes. Zach has to grow past them in order to even be "ready" for their services. The upside is we couldn't afford it anyway. The downside is now, as I have ever felt (and always struggled with the failures of), it is all up to me. I am Zach's only lifejacket and I am old and worn from so much struggling that I feel as if I am not up to the challenge. But I have to be, I have no choice. I WANT to be strong for him, his champion, to just take charge like some super strong has-it-all-together woman, but being strong over a long course of time is really really tiring. He's not a 3 year old. He's 17, and we've been at this for a long time, he and I, and our little family.
If you want to see me as a wuss, I will probably read this in a few days and be embarrassed at this truth myself and be right there with you. But if you want to know how this really feels, right now as I sit here, I am raw, these emotions are real and they are a part of my life and Zach's life as well.
Dealing with the emotional and guilt-ridden mommy part of this has me feeling exhausted and depleted. I am not sure if anybody can really understand this feeling. I am not even sure I do. There is something really weird about hearing your kid hasn't grown past the ROOTING reflex. I know the center director shared that her son had these issues as well, but it just seems so WEIRD... and somehow that I should have noticed it (it is something I can't "SEE" but this is what their testing showed).
We have been given the book "Disconnected Kids" which should be a great resource. I will figure out a schedule for Zach to perform his daily exercises (3x a day for the next 6 months or so, at which time he can be re-assessed.), some of which are simple and others which are more likely to be met with resistance. I am confident that if I teach Chris (Zach's older brother) how to do the exercises with Zach, he will likely be very willing to help with them, so I will have that help. We have been given this opportunity to try something new with Zach. It is a tremendous gift and in time I hope it re-opens the doors of hope. I say WE because I am hopeful that I will get the help I need... the additional support Zach needs to get this done. Putting on my big girl pants and wiping my snot on my sleeve. Moving forward. This IS a blessing... just one with startling revelations. There is nothing that rattles your cage like seeing the depth of your child's struggle and feeling hopeless and frustrated that nothing you or his educational system or anything has addressed this so far! Now I have some keys and can start fitting some keyholes... what I continue to need are prayers and support.
Thank you for caring.
Maria
Because Zach is so severely affected by his autism, it is believed that the root of his difficulties BEGINS with a lack of growing past all but one of 8 of the primary reflexes.
While in the office I was ok hearing these things, but now, as I sit here and try to write about it, I am brought to tears, which is probably not helped (well the TEARS are probably helped but I am not!) by my peri-menopausal PMS hormones (MUCH crazier than when I was younger). I am sorry if this is TMI for you, but it is simply a fact of life and I am trying to be transparent and honest. Where I am in life certainly plays a role in the way I process things. Remember when you were young and you thought you could conquer the world? I am so past that.
At this time the center feels the best course of action is a home program, because they do not deal with primary reflexes. Zach has to grow past them in order to even be "ready" for their services. The upside is we couldn't afford it anyway. The downside is now, as I have ever felt (and always struggled with the failures of), it is all up to me. I am Zach's only lifejacket and I am old and worn from so much struggling that I feel as if I am not up to the challenge. But I have to be, I have no choice. I WANT to be strong for him, his champion, to just take charge like some super strong has-it-all-together woman, but being strong over a long course of time is really really tiring. He's not a 3 year old. He's 17, and we've been at this for a long time, he and I, and our little family.
If you want to see me as a wuss, I will probably read this in a few days and be embarrassed at this truth myself and be right there with you. But if you want to know how this really feels, right now as I sit here, I am raw, these emotions are real and they are a part of my life and Zach's life as well.
Dealing with the emotional and guilt-ridden mommy part of this has me feeling exhausted and depleted. I am not sure if anybody can really understand this feeling. I am not even sure I do. There is something really weird about hearing your kid hasn't grown past the ROOTING reflex. I know the center director shared that her son had these issues as well, but it just seems so WEIRD... and somehow that I should have noticed it (it is something I can't "SEE" but this is what their testing showed).
We have been given the book "Disconnected Kids" which should be a great resource. I will figure out a schedule for Zach to perform his daily exercises (3x a day for the next 6 months or so, at which time he can be re-assessed.), some of which are simple and others which are more likely to be met with resistance. I am confident that if I teach Chris (Zach's older brother) how to do the exercises with Zach, he will likely be very willing to help with them, so I will have that help. We have been given this opportunity to try something new with Zach. It is a tremendous gift and in time I hope it re-opens the doors of hope. I say WE because I am hopeful that I will get the help I need... the additional support Zach needs to get this done. Putting on my big girl pants and wiping my snot on my sleeve. Moving forward. This IS a blessing... just one with startling revelations. There is nothing that rattles your cage like seeing the depth of your child's struggle and feeling hopeless and frustrated that nothing you or his educational system or anything has addressed this so far! Now I have some keys and can start fitting some keyholes... what I continue to need are prayers and support.
Thank you for caring.
Maria
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