H.U.G-Hold up and get permission-Post by Aimee

A hug is defined as a near international form of physical intimacy in which two people put their arms around the neck, back, or waist of one another and hold each other closely. 
Let's just take one moment to look at the words physical intimacy... Physical, in this case meaning, body and intimacy meaning belonging together.  This is all fine. I am a fan of hugging; I hug my husband, my kids, my family and close friends. What I am not a huge fan of is hugging someone upon the initial meeting. When did this become the norm? I understand handshaking carries a certain amount of germ passing on the other hand it also creates a certain amount of space between to human bodies.  Some people, Sophie for one, are not comfortable with physical touch.
When Emily was a little girl she would sit on my lap and we would read books, she loved to lay down next to me on the sofa during quiet time or snuggle between her dad and I. Sophie was a totally different story. Sometimes, with much reluctance, she would sit beside me-never on my lap. She never wanted to lay on the sofa preferring to enjoy quiet time in her own bed and forget about her squeezing in with Bill and I. My first thought was thank goodness, she is not one of those clingy kids! Then I became sad and longed for the days of cuddling with my little girl.  I stopped taking it personally when I noticed she didn't want anyone to touch her. She rarely even wanted anyone to hold her hand. In the world of ASD this isn't strange at all and our family adjusted. Her Auntie switched to high fives, I learned to ask before kissing her goodnight or holding her hand and her grandma and her began bumping elbows as a sign of affection. We were good. The family got the message and we saw clear sailing ahead.
As often happens a storm began to brew. Somewhere out in the world the hug became end all be all of greeting anyone and everyone. Soon people we just met were swooping in for the hug instead of saying, nice to meet you. I found a NY Times article dating back to 2009 exploring this same question and another as recently as 2014 explaining why the Asian culture is hesitant to embrace this salutation.
Overall we are a friendly family and know many people from all sorts of areas of life.  I am very active in a women's organization and see several of these ladies a few times a week. Some of us are very friendly with each other and grown to be close friends. They are nice women and there are a lot of them I hug. When they meet my family their natural instinct is to feel close to them too and want to hug them. As they approach Sophie with wide open arms I see her face change from indifferent to worry. Most times I can step in between and intercept the hug but once in a while I just cant make it.  My very good and very perceptive friend 'MB" sensed Sophie's discomfort really quickly and she began the fist bump with Sophie. Not only did she start fist bumping she asks first every single time. This is huge in Sophie's eyes and she and "MB" have become fast friends.
This morning as we were waiting for the school bus and chatting I asked Sophie how she felt about people who want to hug her. She promptly gave me two thumbs down so I decided to ask her what she could do when a encompassing clasp was heading her way. She immediately held up her hand in a stop sign and said, no thank you! Then I helped her with some other words to use such as, How about a fist bump and I don't like hugs!
I have to say that sometimes I agree with her. There are first encounters where I would like to hold up a hand and say, no, thank you. We just met. How about a fist bump?

Hygiene- A Daily Struggle

We have just finished eating dinner and I ask Sophie to take her plate to the kitchen sink then in a slightly lower voice I say, it is time for you to take your shower. Her shoulders tense immediately and she screams, NOOOOOOOOO! I don't stink. NOOOOOOO! Thus begins our nightly dance and deal making session. I try, you don't have to wash your hair. She says, I will take a shower tomorrow, just let me skip this one night. She is visibly dirty and I can smell her from the table. I must stay strong I must get this kid clean! To say that getting Sophie into the shower is like trying to thread a needle on a runaway horse is putting mildly. She is never in the mood. This is just one of the many hygiene challenges.
Shower time is just one of the many 'choose your battles' moments I face everyday.  I have learned to turn my head at her wearing the same shorts (and many times the same shirt) multiple days in a row and I have let her go to school more than once with her hair un-groomed those are not hills I am willing to fight on. Showering is just one of the many self care practices we have had trouble with.
Hair washing has been and still is a hit and miss deal. She can stand under the shower and apply the shampoo but scrubbing and rinsing are much more difficult. She is terrified of getting water into her eyes so she holds a wash cloth over them leaving only one hand to get the soap out with. Until 10 months ago she refused to wipe her bottom after a poop, refused! The sensation was just much to overwhelming for her so was called to handle this every single time. By far our biggest challenge has been tooth care! Brushing, flossing.....forget it! She wants zero to do with it. Well yesterday this caught up with her. For the past week she has been complaining about a red, irritated spot on the roof of her mouth.  We thought perhaps it was a scrape due to eating a crunchy chip or a minor rub from her braces. Saturday night she told me it hurt a lot! This was cause for concern she has a very high pain tolerance. When she broke her elbow she cried but after a few moments begged to continue playing- thank goodness for my mommy instinct that heard something slightly off in her cry. After much discussion she finally let Emily touch it with her finger and it was a puffy, filled with something bubble. I took her to the dentist yesterday morning and it is some type of gum (or maybe tooth root) infection. Mommy fail!!!! I feel so badly that what may have begun as a slight irritation has turned into this. I have her go brush her teeth twice a day but she is just not getting it so here we are Bill is now flossing and I am brushing her teeth. As I said to Bill this morning one step forward and two steps back.

A very typical untypical day- Post by Aimee

School starts next Monday....please pause as do a happy dance...As part of our annual preparing to go back to school I take Sophie for a trim. This has not always been an easy or enjoyable process. There have been times when the hairdresser has had to stand behind a trembling Sophie, gently spray tiny bits of water on her hair and practically snip on hair at a time.
 My friend Lis has the most adorable/cool haircut, it's short and sassy with a bit of edge. Sophie has become obsessed with this haircut. She refers to it as 'Donovan's mom's Mohawk'. Sunday morning she began to tell me over and over how much she wanted short hair. This is not the first time she has mentioned short hair so I took it a bit in stride. I asked her to describe what she wanted, reminded her that she would no longer be able to put it in a ponytail or have sisa braid it for her. She stood her ground. When we arrived at the hairdresser she immediately began telling her of the plan. The hairdresser looked at me with a question in her eyes, it's her hair she can cut it anyway she wants. We started to look through hair books to get a photo of the cut. We settled on Jennifer Lawrence's pixie cut, with the sides shaved Sophie reminded us. After her hair was cut and gel'd up into a little Mohawk Sophie stated that next time she wanted it dyed red and blue!
I posted before and after pictures on Facebook and received so many positive comments. I also got a few like, 'wow, you're a cool mom' 'wish my mom had been so hip'. It then occurred to me that this is by far the most typical thing my fourteen year old has ever done!!! Her doing something so typical filled me with glee. For a few years now I have watched as the kids of some of my friends, most younger than Sophie, have discovered the freedom in changing their hair. Twelve year olds with blue and pink streaks and thirteen year olds with asymmetrical trendy cuts. I will admit I have been envious of these parents sharing this fun experience with their kids. I am very much unbothered by her cutting her hair. I think its a terrific sign of growth and independence.....Best part is she can fix it herself no more mornings filled with screaming and crying, well at least no crying about tangles!

Sadness- When grief comes to visit

 It was still dark outside on Saturday morning when I got up, I decided to get myself a cup of coffee and sit in the stillness. The moment I sat down I was draped in a blanket of sadness. I could actually feel the weight of the emotion. The feeling had a pulse to it and with each beat my heart began to physically ache.
This is not my usual state of being. I am happy everyday, not all day everyday but a portion of each day. My default is to look at the upside. Sure, the washer broke down but thankfully we had the dough to pay for repairs. I've been called perky more times than I can count, usually be some anonymous person on the other side of a 'how can we help you'? call. Sorrow of this magnitude shakes me to my core. It is so difficult for me to understand.
My  mom once explained grief to me this way, it is like the ocean, waves come at you and then the tide goes out and you are on a sandbar of peace. A rest before the tide surges again.
I remember my first real heartbreak. My high school boyfriend broke up with me on Easter. I took to the couch with a vengeance. I sobbed, I wept, I was teary, by July I was up and out in the world again. In my innocence I thought this was how all loss and pain would be felt for my entire life. The shock followed by some down time and then I would  be over it. I had no knowledge that as I grew there would be degrees of death, not all of it literal. I believed that acceptance would alleviate my need to grieve.
I've written before about the day Bill and I received Sophie's diagnosis, the way my heart burst into a thousand tiny pieces. I then accepted and got into action. Easy. Done. Move on.
Except life isn't the same as when I was a 17 year old heart sick girl. I am not the same.
I think I fight the grief because to me it means I am not in acceptance of what is. 
My coffee grew cold and bitter as I sat, soon Bill and the girls got up, we all had some breakfast and got ready to go to the beach. As we drove to the beach I looked at Bill and with tears streaming down my face said, I can't. he reached out and held my hand. This shroud of despair hung over me as we walked to the waters edge. I felt like pitiful looking cartoon character with a dark rainy cloud over my head, sure that it was visible to all. As I felt the sun warm my skin and  looked out at the blue waves I began to cry again, it felt as if a small balled up fist was clutching at my heart.
Why this degree of hurting? Why this day? I love Sophie and she is just perfectly who she is supposed to be. She has a happy life and brings me a joy unequalled to anyone else.
It's grief. I still grieve over the child I had imagined she would be. I feel a loss over what never was with her. Sports teams she never played on. Friendships she did not make. Independence on a different scale. These are the things we are not allowed to speak of or think. Once I accept her as is, all of those 'typical' wants should be released and I should embrace all that she is, celebrate her triumphs. I do honor how much she has changed and how much more self-reliant she is. Yet this broken heartedness still rears its pain filled embrace. When this happens I try to evaluate every aspect of it, I feel like a lousy mom and all around bad human. I understand the mourning of someone who is no longer physically with us but this anguish over a possibility  is incomprehensible to me. I remind myself that it has only been four years since Sophie's diagnosis even though I knew things were different for much longer. Is four years enough time to fully digest this? Does it take a lifetime to allow the truth to be fully acknowledged?

Verbal vs. Conversation- What this means to us Post by Aimee

Sophie is definitely verbal.
So verbal that there are days I wish she had a touch of laryngitis just so there would be periods of silence throughout the day. She is pretty much talking or making noises from the moment she wakes up until she falls asleep. I know that there are so many parents of ASD kids that long for their child to utter one word and I feel for them. I can't imagine the pain they must be in, waiting to hear their kid utter a simple mom or dad.
Allow me to be clear there is a difference between verbal and conversational. Sophie is not conversational. She does not comprehend that to converse one person speaks, asks a question or makes a statement then person B will answer the question or comment on the statement. What Sophie does is ask questions many, many questions. she does not wait for you to answer she demands that you answer. here is a sample of the daily types of questions I am asked; Are you a girl? Is Ebbie a dog? Is it morning? Can I have chips? Can I bite the dog? Where is dad? Where is Emily? Can I have chips? Can I lick the dog? Where is dad? Is Ebbie a dog? on and on it goes. Now I understand that these are not unreasonable questions but when I am asked them several dozen times a day I get a bit worn out. After the questions come what I call verbal tics. These can be anything from high pitched squeaks or yells to curse words. This usually lasts from several minutes to an hour or more. Then we move on to the rigorous practice of her asking me to repeat what ever word or sound has struck her fancy that day. If I refuse or ask her to say it herself I am treated to more verbal tics or a popular round of whining and why don't you love me? The term for ASD individuals repeating is called echolalia and it is not uncommon. Let me tell you it gets extremely tiring. There have been times when I've thought to myself, oh great now she has Tourettes syndrome on top of everything else, but I believe this is just her preferred way to stim. She will answer questions and I can get information from her but there are no mother daughter chats or heart to heart talks. This is frustrating for both of us, she has always had a desire to connect to people and just does not the skills to do that. As for me I miss just sitting with my teen and hearing about her dreams, fears and sharing our family's history with her. Emily and I had so many opportunities do this as I drove her to and from dance classes, to friends house's or to school. I am very lucky and grateful that I had the chance to experience this with Em as I know many other parents who never get the chance. Sophie and I have had to find a way to have this closeness without the benefit of conversing in the traditional sense. I know she is wanting that intimacy when she sits next to me and sniffs my arm or hair, when she allows me to rub her arm or leg and mostly when she asks for a hug.......as I am holding her and relishing in the quiet moment she says mom! say po-nut!

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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