We are All Mad Here-My Life in Wonderland

“But I don’t want to go among mad people," Alice remarked.
"Oh, you can’t help that," said the Cat: "we’re all mad here. I’m mad. You’re mad."
"How do you know I’m mad?" said Alice.
"You must be," said the Cat, "or you wouldn’t have come here.”
― Lewis Carroll, Alice in Wonderland    
Sometimes I wake up feeling like Alice in her Wonderland. I have gone to sleep feeling just like myself and in the morning I feel as tiny as Alice after she drank from the bottle labeled 'drink me'. So small that I can barely see through the window into the light of the day. On days such as this even the act of getting dressed seems to huge an undertaking. As dawn breaks Sophie and her demands, appointments, needs and quirks tower over me like Mount Everest. 
There are other days when I open my eyes to find I  feel like my head could hit the ceiling as Alice's did after she consumed the 'Eat me' cake. I get up ready and able to take on anything. Sophie has three appointments that day, no problem. She is verbally stimming, chirping and repeating- I got this. I can handle the laundry, make dinner and still find time to sit down for a cup of coffee.
This feeling of largeness and smallness is enough to make anyone feel crazy yet we all feel this way at our house. As the cat said, "you must be (mad) or you wouldn't have come here"
Today begins a week off of school for Sophie. In some ways this is a great 'rest' of sorts. There is no rush to get up and get out the door. I can let her sleep in and take our time eating our breakfast. We can lounge on the sofa and watch movies or some of her favorite TV shows. The downside of having no school is that there are endless hours to fill. One moment she wants to color, the next she wants to go knock on the neighbor kids door, then she is crying that she is board. This morning she picked the skin off from around her thumb until it bled saying she is nervous that the behaviorist wont keep her appointment today. It breaks my heart when she does things like that. I can't imagine what torment her little mind must be in.
Then we have days like yesterday. We all went out to celebrate Emily's birthday. Sophie asked to wear a dress, never mind that she doesn't own a dress, her sister found one to lend her. Sophie allowed Em to 'style' her complete with hair, lip gloss and super cool boots. Soph filled her skull bag to the brim with toys and her IPOD then we were good to go. We arrived at the brunch spot and thankfully they sat us quiet'ish area in the back. The meal went off without a hitch, she ate well and was mostly calm. The ultimate moment for me was that she reached out and grabbed Emily's hand and they walked to the car holding hands and chatting. We spent the rest of the day at home just hanging out and ended it watching the Wizard of Oz. Such a typical, lovely Sunday. So very rare in our lives.
I think you can now see why I feel like Alice. The difference is I never know what I am waking up to a drink me day or an eat me day.
Our house is a crazy Wonderland and I am just hanging on and going for the ride.

Breathe- A Guest Post By Jennifer Fahs Levy

'Feelings come and go like clouds in a windy sky.

Conscious breathing is my anchor'

Thich Nhat Hanh

Dear Ones-

(I love this way of addressing people, Maya Angelou used it and so does writer

Elizabeth Gilbert. It is gentle and kind and reminds me what a gift I am)

Being a child of alcoholism and abuse and the oldest child; ready to fix it all,

sometimes can give me just the strength I need to face any situation and other times

cripple me with self-doubt and a feeling of not belonging. Oscillating between the

two emotions is maddening. I desire so desperately for approval and to be “in” and I

am always left with “out.” Then my pride kicks in, I get frustrated and don’t care. I

say to myself, “these people don’t know me. They don’t know my life or my kids.

They don’t know how far we have all come.” When life is distilled to it’s simplest; I

have a f-ing fantastic life! It could be so much worse. When I stay in this space of

pure gratitude and happiness due to the blessings that have been bestowed, life is

awesome.

Being the ASD child's only connection to the social world; the one that calms all their

meltdowns; the one that teaches social manners relentlessly, despite a public

tantrum; the one that is constantly stretching, shaping, and pulling them into

uncomfortable areas with the hope of some normalcy in adulthood, is exhausting.

Over the past eight years, it has taken a toll on my nerves, on my marriage, on my

friendships and on my sanity. I suppose some parents of “typical” children will say,

“that is what all parents are supposed to do these days.” I can tell you with certainty

that is not what my parents did. We were accessories of marriage to be shown off at

dinner parties and grocery stores; but my parents never studied “parenting.” They

never worried about anxiety in us kids or had any idea about sensory overstimulating

children. These are real issues for my kids and when I developed an understanding

of the steps I could take to help them, then they began to start looking and behaving

like “typical” kids. Don’t get me wrong, they still have these issues, I am just better at

making them look “normal.” The other drawback to that is that more often the people

I come across or develop relationships with don’t consider my children “special

needs.” Right, they don’t walk with walkers or get around in wheel chairs and I am

grateful for it. They are however on medication for anxiety. Most parents when they

find this out think I must have some form of Munchausen. I must be one of those

crazy “helicopter” moms creating more problems than there really are. People don’t

know that Hudson did not speak, they did not see the thousands of hours and dollars

on Speech, OT, Social Skills, and Play Therapy and just plain Therapy. They weren’t

in the room when my child made multiple wishes for death. I grew up in a not so

great situation and you never heard me say that? These kids are not the norm.

They are more than that, they are complex and amazing!

So, I guess what I am trying to say is I try to be truly balanced. On the side, I started

a support group with another special needs mom to share experience, gain strength

and hear some hope in this mental health battle. The overwhelming topic that

parents in our group keep returning to is caregiver burnout. Moms and Dad’s are

putting such unreal expectations on themselves, trying to do it all, and never taking a

break. I put my kids first certainly. There is no other way. I am their “person,” but

during those particularly “melty” days I let them “plug-in” (no judgement) and I drink a

cup of tea and write. When they are safe at school, I say NO to volunteering 3 days

a week and I run. There is nothing more freeing for me than putting fun, upbeat

music on and slogging my frustrations out on the pavement. I garden and meditate

to be as centered, rested and rejuvenated as possible, so I can handle the after

school meltdowns with ease and grace. I think I came to the conclusion that the only

validation and strokes I need are the ones I give myself. I am awesome and so are

you.

As my Aunt always says to me, “May the force be with you.”

Jen

Bio: Jennifer Levy is a former kindergarten teacher in Los Angeles who moved to

Salt Lake City in 2006 after having her first child. In 2013 he was diagnosed with

Asperger’s and Anxiety. Her second child came quickly after in 2007 and was

diagnosed with Autism in 2010. She is the Co-Founder of Utah Easy to Love Parent

Support Group 501 (c) 3, which holds two parent meetings monthly, as well as, family

activities for the special needs community. She is also a runner, writer, gardener and

an artist (in all her spare time :)

This is a great article in the New York Times that ironically addresses many of the

health benefits of meditation and breathing for the stressed out caregiver.

http://mobile.nytimes.com/2014/07/29/health/when-the-caregivers-need-healing.html

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