What a thinker thinks

>> Monday, September 14, 2015

The move to Chicago has been nothing short of crazy and exciting. Bug adapted very well. He has always had change and evolution around him and done very well with it. It surprises people when they know he is on the spectrum. But he isn't truly Autistic in the sense of the diagnosis. He likes people, and to be cuddled, he likes trying new things and is back to turning lights off and on and opening and closing doors occasionally. We have the span that is the spectrum, right here, in our living room.

What I was NOT prepared to handle during the move caught me off guard just today, a week into being in Chicago, and that was Aiden.

Aiden was listing all the people in our family and relating them to moving to the new house. He said he liked the new house and playing with everyone and then listed us: Mom, Dad, Ava and Taylor.

I said: And Buddy.

He said: And Buddy.

It was at that very moment I realized the really crappy part of this entire 'living with special needs'.

A friend wrote today:

"When a child is born with a broken heart, it's not just one heart.  It's three, or more. Because it breaks the hearts of each family member as well.  When you remember the little ones with special needs, remember their siblings, those standing in the shadows."

Bug doesn't have a broken heart, so I use this metaphorically, what he has is broken in many ways and truly wonderful in others.

Back to AIden and I on the floor looking for cables, I said: Aiden, I am so sorry you didn't know Buddy, he would have been a great big brother to help you with all these things.

Right then and there I thought: I haven't really mourned my boy. Special needs life is a process of mourning. Mourning the child and the life you thought they, and you, would have. And adapting to the new normal.

It sunk in that I couldn't mourn because all these new things, new treatments, new hopes, come back in where I thought they were gone. We are constantly being reminded that there is hope he will talk, hope his seizures may be stopped, hope that he will learn and grow, albeit slowly. In so many ways, it's harder than the diagnosis: Living with the outcome.

So then I thought about the move itself, how Bug was actually part of the work to be done and not a part of the workforce.  He wasn't able to help lift the furniture, or pack the boxes. He wasn't able to help in any way. In fact, we had to use resources to keep him safe, keep him clean and fed. He's 12. When I was 12, Dad let me drive the car.

All these things were driven home by Aiden not including his big brother automatically. Something ANY younger sibling would do with an older sibling they don't interact with a lot. But his little slip caused too much thought, too much emotion, too much, just too much.

We love the new house, all of us, Bug included. He loves to walk through all the empty rooms and look out each window, he likes to go up the stairs and down the stairs and lay on the different textured floors: wood, carpet, rugs, tile, it's all here and he enjoys it. He smiles an chirps and it makes my heart happy, but he isn't eating well, at least like he was before, and I worry about him falling down the stairs, or wandering outside. I have to take care of all these things so I can rest better and not overreact to the simple words of a little boy who will learn more valuable lessons from his big brother despite not ever hearing his voice.

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What a Seizure looks like (Graphic Content Included)

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Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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