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
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