Friday, January 8, 2016

Mamma Gut Part 2

I am a big believer in expectations--and I do not like to be let down.  I love people who create realistic expectations with me....and cherish those that meet and exceed my expectations.  I struggle when people let me down or don't meet expectations.  It frustrates me.  I think there is an element of trust that plays into this--if you create an expectation with me, I believe you.

I also believe in the self-fulfilling prophesy--that we behave in a way that is a direct reflection of our thoughts which literally turns thoughts into realities.  Create an expectation with me and I'm going to try to turn it into a reality.  Also, I have high expectations of people because I think that it helps them rise to the occasion--if you believe in them, you treat them like you believe in them, they start to believe in themselves.

Enter parenting--the ultimate opportunity to see high expectations play out and turn into realities with a few (try a billion) unmet expectations scattered along the way.

Now, lay my little theory out and test it against Matthew.  From the day he was diagnosed, I FOUGHT in my mind to continue to have high expectations, believing fully that my belief in him would help him be "cured" of autism, "catch up" from his delays, and reach his full capacity and potential.  I clung to the belief/feeling I had that Matt would catch up at some point and it helped me to see him for who he could be rather than through the lens of the long list of diagnoses that were piling up before me.  Three and a half years later, I think a little bit of reality has wiped the tint from my rose colored glasses and I'm starting to realize that I need to adjust expectations.

Here's the interesting part--I did not say LOWER them.  I do not believe any less in Matt than i did when he was born.  I just need to believe in MATT....the real Matt and not the one that I sometimes see in my dreams when I fantasize about the typical family we will someday morph in to or when I calm my jealousy of other families by changing him in my visions to be "typical."  I need to believe in his ability to reach his potential with the perfect imperfections that he came to this earth with.  My battle is that I have not really understood the reality that we are dealing with and therefore have struggled to know what to expect of him...what is appropriate to expect.

ASD (Autism spectrum disorder) is a sucky label that is used to describe about a million billion kids that are all totally different.  I feel like it makes sense to the world somehow when you say a kid has autism, but when you are living with it, it feels like a really vague, unclear and ambiguous label because we are looking for explanations and very pointed, clear descriptions of what we can expect of our child with ASD and what we can expect of their future.

I have felt for some time now like this label is insufficient in Matt's case.  It does not describe him.  I know there is more going on--yes, he definitely has autism, but autism does not explain what is going on with him to my satisfaction.  And, strangely, he falls short of expectations of a child with autism.  Many of them have a genius that is hard to explain, a gift that is beyond "typical" abilities, or something that sets them apart in a very remarkable way.  I have been asked countless times "what is Matt's gift?" and get a little pit in my stomach because I don't know....and not to think less of him in any way, but I don't see a budding genius in any specific area.

This leads me to today--I had a meeting with a new neurologist who also thinks that Matt has a seizure disorder.  He was able to describe with much more clarity exactly what he sees when reading Matt's EEG's and it was so helpful to have him sit down and walk through his findings.  Matt may or may not be having seizures right now (sometimes they can be so subtle that we are actually being instructed as to what we need to watch for with him that could potentially be seizure activity), but the likelihood of him having them at some point is pretty high.  He has been prescribed rescue meds so that we are prepared just in case he does.  As I sat and discussed this and several other findings/concerns, my Mamma Gut pushed me to ask the doctor whether or not something he sees in all of this tests might help explain Matthew's delays and disabilities because I feel like he has more going on than autism.  Thankfully, he honors the mamma gut and looked for awhile at the tests and shared with me that he also sees some diffused slowing brain patterns in Matt that are taking place in the left frontal lobe which is the same area from which the abnormalities are originating and is the area responsible for speech, comprehension, etc.  He suggested that autism doesn't explain this--that these are not typical patterns found in a child with autism, but rather are an indication of an abnormally developed brain.

While this might be super sad news to someone, it gave me a HUGE sense of relief and gratitude.  I pondered all day why.  Why was I not worried about this?  Why was I not sad to learn this?  I mean, with this comes the realization that Matt will likely never "catch up" or be "normal"--we can't pretend that autism is causing his intellectual challenges or that his lack of speech  masks his brilliance.  This should be devastating to me.  Rather, it helped to change my expectations.  Every intellectual victory seems sweeter if you realize that he had to climb a mountain to achieve it....vs. being frustrated that other kids with autism are able to pass standardized tests, write, read, know their letters, colors, numbers, etc.

As hard as I try not to compare because I recognize what a horrible and metastasizing cancer that can turn into, I would be dishonest if I said I never did.  But rather than compare him to his peers, I have started look at other children with autism who are doing so much better in school and have so much more ability than he does and wonder if there is something I am not doing that I should be.  Or when I hear about things others have tried that work, I feel "less than" because I haven't tried it yet.  However, if there is something more than just autism that "explains" Matt, it kind of relaxes me.

Matt's potential, spiritually speaking, remains the same--he is a son of God with a spirit that is equal in ability and potential to mine.  However, my expectations of Matt can start to change the more I understand about the reality of what he is dealing with.  I'm a fan of realistic expectations....and then exceeding them, which I am confident he will do.