Wednesday, April 11, 2012

figuring it all out...

i have been muddling through all of my emotions for the past couple of months and trying to re-align my worldview the best that i can in the face of learning that our oldest son is one of the many children affected by asperger's. 
the moment that the doctor told us that, yes, we were indeed looking at asperger's i was surprised by the overwhelming influx of sadness i felt.  i expected this result.  i knew something was off.  if anything, i was afraid that my concerns wouldn't be validated.  yet, somehow, when she uttered those words i held back tears.  i tried to listen as she pointed out resources but mostly i was just concentrating on not looking like a blubbering mess...not that i suspect she would have thought anything of that (i was a blubbering mess throughout my interview). 
this is where we are.  having a diagnosis doesn't change anything but at the same time is changes everything.  the emotions are complicated. 
at the end of the day calvary is still calvary.
he is my boy who hates change-even if that change is good-even if that change is going to the park for a picnic and bubbles.
he is my boy who despises collard shirts and button shirts-to the point that wearing them is a battle for days-to the point that i rarely try-to the point that i have started buying him lego star wars shirts just to not have to fight anymore.
he is my boy who is amazingly good at computers and video games-to the point that his skills are far superior to other kids his age-to the point that his skills are superior to mine-
he is my boy who struggles with social chit chat
he is my boy who often finds a way to leave the party...even if the party includes friends of his own.
he is my boy who rarely wants to give a hug or kiss.
he is my boy who has meltdowns that are NOT a result of being spoiled or unparented.
he is my boy who has super hearing-to the point where he covers his ears when he flushes the toilet-to the point that he often loses it in spaces where sounds are competing.
he is my boy who is passionate about the things that he loves-to the point that he cannot do anything else-to the point that others might call it an obsession-to the point that i am now learning about star wars in spite of the fact that i never, ever would have believed it would happen.
he is my boy who doesn't understand how to process his emotions-to the point that almost everything comes out as anger.
he is my boy who sees the world quite literally-to the point that i often have to translate for him-to the point that i overhear many funny replies (a little boy said to him, "are you dreaming?!" to which calvary responded, "no. i am awake. i am standing right here.")
he is my boy who has always seen the world in numbers and patterns-to which i know nothing about-
he is my boy who always has random facts about things i never knew he knew about-did you know that snakes smell with their tongues? he does.-
he is my boy that wants to be social but sometimes doesn't have the energy to make the effort.
he is my boy.
the diagnosis didn't change that for me.  what it has done for me is help me understand.  it has helped me understand why things have always been different for him.  i labeled blogs about calvary "the world of calvary" so long ago because for so long it has been evident that his world and the way he sees it are entirely different. i understand why he has never responded to the parenting techniques for tantrums that i have read about and tried. i now understand why he doesn't modify his behavior for his surroundings like most children his age will.  he shouts in the parking lot of target just as much as he shouts at home.  i also understand now why i cannot force him to be a typical child. i have to modify my approach in order to expect success.  and i have to modify my definition of success.  understanding why things are the way they are has been such a liberating emotion for me but even better than that is the window i have been given in to his world.  understanding calvary, in the most skeletal way possible, has started to transform our home. 
understanding is only one side of the diagnosis coin; the flip side of that coin has been the questions that it has brought.  i question everything.  should i home school? in what resources should i invest? how can we afford this? what can i expect from him? how do i help his siblings understand why life is different for him? how do i keep my younger children from modeling some of calvary's less than desirable attributes?
the biggest question that i didn't expect myself to ask is,"why?".  i have started hypothesising reasons calvary has asperger's.  last week, when i was about 2 hours into my research between the connection to pyloric stenosis and asperger's, i realized what i was doing.  i guess it seems pretty natural to want to understand why.  of course nothing is changed by the answer to that question for calvary's life, but it is interesting to connect the pieces.  we can find people in our family tree that closely resemble our oldest son. there is also a connection between the gut and brain that i have found deeply interesting. 
mostly, i am still the same.  i am still trying to understand what i need to do for him.  just like i am still trying to understand what i need to do for harper, oliver jack, and finley.  this diagnosis has not changed my world; my world was changed the minute he was born (in all ways wonderful and challenging).  but i am in a new world of information.  and i do feel overwhelmed. 
i have realized how much i need to educate the people around me about the unique qualities of asperger's.  calvary is bright.  he doesn't need people to feel sorry for him.  he needs people to be patient with him.  it makes me think of colonizing a foreign land...understand his customs and beliefs and he will be much more receptive and peaceful to your customs and beliefs :)
and maybe a little grace for me...instead of the downward gazes of judgement of my parenting. 
never was a child more loved.

8 comments:

Carrie Bailey said...

Cassie,
As a friend of parents with children diagnosed with Aspergers, I have heard all of the same concerns from them. But, you are so right. He is still your boy and your love, along with God's love, you will see such bright hope when you look at, your boy.
I will pray for you in the days, months, and years to come. I know you are chosen by God the privilege of watching him grow into a fine, strong young man.

PeripateticLibrarian said...

Like all of us, Calvary had strengths and weaknesses. Insomuch as we succeed in life, we use our strengths to deal with our weaknesses. With all your help, Calvary will do the same and he will be a marvel.

Traci said...

You articulate this so well Cassie. I know you will be the best mom Calvary could ever ask for. In a very different way I understand people not understanding your children. A lot of people don't understand what Pierson and Maylin go through and why they may or may not understand or accept things the way other kids do. We are all subject to our own personal stories. The sooner people understand that the better the world will be!

Unknown said...

I cannot say enough times how wonderful of a mother you are!!! Calvary is still Calvary and Calvary is the perfect Calvary... that is the key. I stand with you 100%. We will make our worlds more understanding and accepting of our little aspies. Of that I know for sure. :)

Fred Vanderbom said...

Your post radiates your love, wisdom and faith, and this surely is the very best combination we can give to our children and the more so our children like Calvary.
I had pyloric stenosis and have very mild traits of Aspergers, and both are in my family tree. I also am passionate about exploring the links, not as an escape, but it's helped me to understand and embrace who my family members and I are.
I pray you will continue to recognise God's wisdom and strength.

Cassie said...

Thank you for your kind words of encouragement! I am so blessed to have people willing to pray for our family.

Cassie said...

Your words made me smile...

Cassie said...

Thank you for taking the time to write! I am so interested in learning more about the connection between pyloric stenosis & ad. I am sometimes overwhelmed by how little I feel like I can do for my son but your words inspired me to know that loving him is so much of what he needs! God bless!