Thank God our internet isn’t the most reliable because a few
weeks ago, in a purely emotional state, I turned on my computer with the mindset
to delete my entire blog. I was feeling
defeated, insecure, and wavering in my beliefs.
That’s how rough the week had been.
It’s very difficult when you decide to use a treatment like biomedical,
which is controversial, not understood, and foreign to the general
population. It’s even more difficult
when even amongst the autistic community, the one you belong to because your
child doesn’t “belong” to the typical community, isn’t supportive,
understanding, or encouraging with your course of treatment. It becomes overwhelming when all you’re trying
to do it help your child and you’re seen as harming, non-accepting, and
downright insulting those in the autistic community who believe there is
nothing to “fix”.
I think we should all encourage each other with whatever
route we choose to take. All we are all
trying to do for our children is to help them achieve their fullest
potential. None of us would ever do something
knowingly to harm our child. I believe
it’s so important to remain open minded when it comes to all different types of
treatments for our kids. I do want to “fix” things that limit him
because of autism. I don’t want to “fix” his sense of humor,
his silliness, his outgoing lovable self, his love for electronics and comic
books, his deep emotional connection with everyone around him. I don’t think that by taking away behaviors
such as pacing, walking in circles, vocal ticks, inability to focus his
attention, hand flapping, food sensitivity, smell sensitivity that I will be
altering who he is. These are issues
that limit who he is. Maybe our route of treatment will work, maybe
it won’t, but I need to try.
Since beginning our journey in biomedical treatment a little
under a year ago, this is the 1st time that I have felt doubt and
questioned its validity. Things have not
been progressing as they did in the beginning and we’ve hit a wall, so to speak. I’ve cried, I’ve prayed, and I’ve considered
giving up, but in the end I reminded myself the wise words of his doctor. “This is not a sprint…it’s a marathon”. If I don’t stick with it and finish what we
started, I’ll never know if it was really the answer and if it would have
worked. So, I’m sticking with it. I’m giving it a chance to heal that which
needs healing.
I’m continuing with the supplements his body needs to support
his system and repair damage done, we’ve started hyperbaric treatment (I’ll
write a post about that soon), we continue on a very strict gluten/casein free
diet, I’m still trying to reduce his carb and sugar intake (to control yeast)
and increase his protein and vegetable intake, and I’m also learning more about
using essential oils. We’re back in
occupational therapy after a few months off (insurance change) and I’m hoping
to begin seeing those positive changes we initially saw when starting OT
soon.
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ReplyDeleteI am so glad to see your post. I hear it is challenging and trying, and that a lack of support from others makes you want to give up. Forget those who are ignorant and don't understand where you and your family are coming from, when making your choices. Maybe they will learn and be inspired. You sharing your story is very encouraging and can inspire many. YOU and Alec are TRUE inspirations!! Have faith, stay strong, and keep going!!!!
ReplyDeleteThank you Jeannie <3
DeleteYour post made me think of this passage that I read yesterday from horse trainer, Buck Brannaman:
ReplyDelete"You’ll have some horses in trouble that have been that way for a long time. It’s too bad, but most of it is due to the human and what they’ve exposed the horse to. At the end of a session working with them (the horse), you feel like you really got something accomplished; you feel real good about things.
And you go out first thing in the morning, and the way he responds to you, you feel like you didn’t do a damn thing the day before, like you’re starting over from nothing, and it didn’t carry over. And you think, 'Why did I even do it yesterday?'
But under those circumstances, if you’re not willing to go back every day and start over, you shouldn’t have started to begin with, because you might have to start over a lot of days in a row before it carries over from one day to the next, or one month to the next or one year to the next.
But one day it will, if you’re willing to start over enough times from zero. One day it’ll surprise you, and it’ll start off maybe farther ahead than you left it the day before. And that’s quite a thing for both of you. But you have to be willing to wait that out. Having had a lot of experience at doing this, I could start over 500 days in a row, and it doesn’t bother me a bit. I’m going to be the same guy at the beginning of the day each day as what I was the day before.
Not everybody has that in them. I often tell people, it doesn’t make any difference to me where I start my day, it makes a difference to me where I finish my day. Did I leave things a little better off than how I started? It doesn’t have to be perfect, but if it’s just a little better off than how I started, I got along just fine." - Buck Brannaman.
I've also been on the biomedical journey with my 10-year-old son on the spectrum. It can be so hard when so many people disagree or think what I'm doing is useless, has no scientific basis, or is just causing more trouble for my son and myself. I often think that it would be much easier if it weren't for the other people who don't get it, who keep feeding their kids artificial processed foods and offer it to my son. I cringe every time a holiday rolls around (Halloween is next!) or when a family get-together is planned or we want to take a trip because I'm so stressed about making sure we have enough good food for my son. I get tired of defending what I'm doing. Now that I've learned more about good nutrition, I hate seeing parents or teachers feed kids unhealthy foods. My son's class went on a field trip and they stopped at McDonalds on the way back for lunch. Of course I packed a lunch for my son but I feel it's so wrong for schools to condone eating at fast food restaurants when they should be teaching kids about healthy eating habits and making good choices. I feel like it's us against American culture!
We just have to keep trying, though. Day after day, we just have to keep plugging away and hope we're making a difference, celebrating the successes. Buck is right that "not everyone has that in them."
Thank you for your encouraging words!!
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