We've Got Another Mystery Here, Where's Nancy Drew?-Post by Aimee

Yesterday was a lazy gray Sunday. The kind of day that begs you to find a cozy blanket and snuggle down with an old black and white not caring if you doze off midway through. That's just what we did, after lunch and running errands we each found a little space to nestle into. Bill ventured out in the late afternoon to pick up dog food and decided to grab a couple frozen pizzas, an easy day calls for an easy dinner.

By 7pm dinner was eaten and cleaned up. Bill, Sophie and I sat together in the living room, we watching tv she listening to music.

Suddenly she looked up and moaned, 'I'm dizzy' she yelled! 'Everything is blurry' take a deep breathe I calmly said what's blurry? The TV, you everything!!! She then said she was very dizzy! That things were going side to side not spinning but moving. Her eyes began to ping pong back and forth. She stood up, then quickly sat back down. 'Why is this happening again?' She wailed. Bill had her come sit between us and I kept asking her to take slow deep breaths- she started to squeeze her eyes shut tightly, a few tears escaped between the lids. We gave her water, a cool cloth on her head and just when we thought she was going to be fine she started to gag and cough, saying she couldn't breathe, screaming, crying and yelling that she was dizzy. This went on for about 45 minutes. We turned off lights, we turned other lights on, we offered water- she kept missing the table as when she wanted to set it down. We gave her a heavy blanket then opened the door. She liked the air and hated the light so I took her outside and walked up and down the street with her. Finally we seemed to be over the worst part. A short time later she wanted to go to bed. I put a tiny bit of lavender oil on her tummy and rubbed it around and around. Placed a weighted blanket on her, turned the bedside lamp on and put Frozen on very softly. Her eyelids were heavy as I left the room. An hour later I went back in to turn the tv off and her eyes flew open I left again. Emily came home a couple hours later and went to check on her she quickly opened her eyes as soon as she stepped into the room. It felt like she came into our room every hour to ask if it was morning, to ask for water and once to ask for a cupcake. At 6am she again said she was dizzy and asked me to lay down beside her in her bed. As soon as I laid down she started to talk- speaking rapidly and non stop. She jumped up and got dressed and was moving all over the place. She insisted on going to school since Monday is music day, her favorite!

After she left and after coffee I began to call her 'team', the pediatrician, her  therapist, the school psychologist and  her psychiatrist leaving messages explaining this latest episode- she had a similar one last month.

The pediatrician called back quickly advising me to check with the psychiatrist. The school psychologist said she didn't know what it was but didn't think it was a panic attack. Her therapist promised to look at the video I sent and get back to me and the psychiatrist has not yet called back.

Bill and I feel we are in that same horrible spot we were in four years ago before her diagnosis. All the professionals just telling us 'she is very complicated' ' this is extremely unusual' in other words we feel lost. All I want to do is help her. Take away whatever is causing her this fear and stop these episodes but I have no answers and the people who are supposed to help have no information. 

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.

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 Girl People Remember-A Special Gift Sophie Has

One of the most incredible things about Sophie is that every where we go every one knows her! they
do not just know her name but they remember her! This is not a new phenomenon it has been going on since she was an infant. I used to be stopped in malls by people asking her age and then remarking how 'huge' she was. I would often see those same people and they would want to come see the 'giant' baby. Please understand that she was in fact completely average size so much so that at six months of age she wore six month clothing. Once when we were in a large Palm Springs Hotel we were walking through the lobby to the pool and every one we passed would  smile and yell, 'Hi Sophie'! she was probably three at the time. This caused Bill and I much concern. How and Why do all the guests at this resort know our kid?  Turns out my mom had taken her to the pool earlier in the day and Sophie made her sure she was acknowledged. I have walked her through schools were she was extremely unhappy and dozens upon dozens of kids have called out Hello to her.
This is both remarkably and terrifying to us.  It is so very scary that she has such a strong desire to connect with people that she just talks to any and everyone! She likes almost all people and does not understand what a stranger is in anyway. She has the innocent trust of someone much younger who thinks all people are good, that they are kind and will help her.  Sadly this is not the world we live in. So Bill and I watch her extra closely, I have eyes on her ALL the time. I do not allow her to go to the next aisle at Target or Ralphs, she can not walk up to the Orthodontist while I park as Emily used to do and forget teenage trips to a movie alone. Like I've written before there is an extra sweetness to this and I know I get to witness things parents of other teens do not. But this is not what I want to write about today. Today I want to talk about good, kind strangers and how there are some very special people out there who truly understand our girl.
Our computer has been acting up and after several minutes of trying to print out the order forms for Sophie's lunch I finally forwarded the email to Bill and asked him to take care of it.  There is no traditional cafeteria at Sophie's school and thanks to some great parent volunteers each year arrangements are made with local eateries to prepare and serve the kids lunch. There are just over 350 children at the school from preschool age on up to the young adults in transition- so I am sure you can guess how difficult it is to feed all those people, many of whom are very particular.  I usually allow Sophie to choose two days a week that she would like to buy lunch and she always picks Pizza day as one of her options. This year Grey Block Pizza has agreed to do 'Pizza day'.  We order the lunches two months at a time. Bill sent Sophie's order into Grey Block today and received the following email in return: Thank you for your order. I just wanted you to know that Sophie does not like a lot of cheese on her pizza so I have been making her pizza without cheese' Bill immediately wrote back thanking her and asking if we need to send additional money for this special order or mark it on the form and she replied, 'Sophie approached me very kindly and asked. She is a wonderful young lady and I am so happy that Grey Block was asked to be a part of feeding the wonderful kids a THG! All children deserve to be treated with respect and kindness' Bill and I both cried happy tears to hear this love and kindness extended to the kids.
I am overjoyed to say this is not the first time a stranger has shown our sweet gal kindness above and beyond her duties.  Every Wednesday my mom and Soph have a dinner date at Islands and of course ALL the employees know Sophie. The hostess greets her by name, the waitresses stop by the table to say hi and look at Sophie's action figures, they all even know her very specific order by heart.
Her favorite waitress is Carolina Last year my mom told Caroline that we were bringing three of Sophie's friends to dinner at Islands for her birthday. Several minutes later Carolina asked my mom if it would be okay if she and the others decorated the side room in a Superhero theme for the party.  I thought perhaps she would put up a few streamers and a poster. Imagine my shock when we walked in and there was a huge backdrop of high rises with colorful BAM, POW'S and WOW'S in bright yellow, like in a comic book. She had candy on the tables, balloons, and streamers. I cried and cried when I saw it. This is a young mother with a toddler of her own yet she stayed up late and cut these foam core boards and decorated for this kid! This kid who just comes in to eat.  The generousosity of her heart blew me away. I am happy to report that Carolina is still Sophie's favorite waitress and sometimes Sophie even asks about her little boy.
While Islands is Sophie's all time favorite place to eat Bill and I tend to get a little tired of it so last summer, on a whim, we decided to take her to one of OUR favorites Truxtons. This is a fantastic place in our neighborhood. We enjoy it so much that most Wednesday nights (our date night) you can find us there. The first time we took Soph she was very apprehensive in fact she cried before we left home because we were not going to Islands. We pushed forward and made our way to Truxtons, as we settled into the booth Sophie clamped her hands over her ears and began to kick the chairs. Uh-oh I thought we have made a huge error! This is going to be awful. In the next moment a pretty blonde appeared to see what we wanted to drink, Sophie's eyes light up and she shyly asked for a coke. Ok, perhaps we could do this. Opening the menu I spotted our next roadblock, they no longer had tortilla soup on the menu! I began to read the list of soups to Soph and at first she whined about the lack of tortilla soup then suddenly the blonde was back with her coke, plunging her hand into her pocket Sophie produced a Sonic action figure and the waitress promptly said 'hey! I love Sonic'! Let the bonding begin!! We found out her name was Brittany and she not only liked Sonic but she offered to bring us a sample of another soup.  As she served us our dinner and refilled our drinks her action figure education was put to the test and she did great!!! We took Sophie back to eat there a couple of months later and luckily Brittany was our server again. Several weeks after that when Bill and I were having dinner there one Wednesday night the manager came over to say hello to us then he told us that Brittany went back to school in Santa Barbara and was no longer working there but that he had a gift for us. When he returned he had a few comic book style books, they were for Sophie from Brittany. She had only met her twice but remembered her.
As I said she is a girl people remember.

Do My Friends Know-the day Sophie found out her diagnosis

On a cool fall day I was laying on the sofa reading a book as the curtains gently blew in the breeze. I could hear the kids laughing, their shoes making a smacking sound as they ran up and down the driveway. Sophie was giggling one moment and then I heard her happiness change to nervousness, I don't know how to do that she said in a softer more embarrassed voice the other kids yelled with glee and shouted You don't know what two plus two is? Quietly I got up and tiptoed to the screen door I stood off to the side where the children couldn't see me. What grade are you in? The tallest boy taunted, Yeah, what grade? his younger brother chimed in. I peaked around the corner and saw Sophie hang her head, she tried to smile and laugh with others but clearly she didn't get the joke. The other girl in the group then began to ask her to spell, right then I'd had enough. I opened the screen and asked what was going on, immediately the kids started to declare how can Sophie not know what grade she is in? Can't she add? Can't she spell? I was angry. So angry at them for teasing her and trying to make her feel badly. I took a deep breath and knew the time had come for me to tell them that Sophie was in fact different.
When Bill and I found out Sophie's diagnosis a part of me knew that one day I would have to have a talk with her and tell her about it but a larger part of me somehow thought that I would never ever have to discuss it with her. As her mommy I figured I would be able to 'protect' her from that news. We would get her into the proper school, the best therapies and love her, there would be no need for her to know the details. How could I be so naïve and unaware? I knew that information gave us choices and power so why wouldn't I want to give that to my daughter? I didn't want to hurt her. I didn't want her to feel separate or less than her peers. On the other hand if she was unaware there was a name for her difference, that could make her feel worse. So I stepped out on the porch and called the kids over, I told them that Sophie's brain worked in a unique way that wasn't the same as theirs. I explained that all of us learn differently and that things like math and spelling did not come easily to Sophie but that other things were much easier for her like art and drawing. Most of them began to nod in agreement but the tall boy boastfully announced that he knew about science and the periodic table of elements, at this point I really wanted to pinch him but refrained and started again. 'have any of you ever heard of autism'?
The tall boy, of course, shook his head yes. 'Well, that is what Sophie has. It means she looks at things in a way that you and I do not. She can do things we can't and some of the things we think are simple are more difficult for her'  The girl nodded her head and said, 'Oh. I have heard of that' she skipped off ready to continue playing. Several minutes later as I was taking out the trash Sophie came over to me and whispered into my ear, 'mom, is it true'? yes, I replied 'Oh my gosh! Do the kids at my school know'?  Laughing I said, 'honey all the kids at your school have autism' she looked at me for a long moment, 'Good, because I really like my friends at school'
Is that I how I wanted to tell Sophie about her diagnosis? No. I wanted it to be just right. I wanted to sit with her and talk all about it and what it means and what it doesn't mean but the reality is that I don't even know what it does and does not mean. The reality is that this was the day and time I had to tell her. The reality is that me thinking that we could sit and discuss this is a fantasy in my mind. My daughter would not have wanted to sit and discuss for an hour her diagnosis, she is perfectly happy to know that her friends at school get her and like her and she likes them.
When I have asked her what it is like to have autism her response is always the same, 'it is AWESOME'! That is how she feels and how I feel is that she is AWESOME!

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!

Beach Buddies- Post by Aimee

I settle into my beach chair to watch the couple in front of me as they are head towards the water. They move in a slow tentative way. First the mister goes in about up to his knees then slowly the missus inches towards him, she is more unsure and cautious. After rapidly adjusting to the temperature joy begins to spread across their faces. He begins to move his hands quickly, opening and closing them rhythmically moving his arms as if he is a conductor and the sea is his orchestra. She runs in and out of the surf constantly checking to make sure she can see the familiar stripped umbrella. Every so often he is carried off to the side by the current, she approaches and very gently takes hold of his elbow and brings him back to center. When a rogue wave splashes her in the face he howls with laughter, she smiles and secretly hopes it will happen again. Looking at them I am reminded of those elderly couples you see in the grocery store, the ones that have been married so long no one can remember a time when they weren't. I am not observing some loveable octogenarian couple re-living their youth, I am witness to something much more precious....Sophie and her friend delighting in the ocean. At moments like this they don't seem different from the other children in the water they look like thousands of other people who not only love the sea but who are also calmed by it. 
 I understand now that these kids may not speak or communicate the way you and I do but that they speak to one another in a language all their own.
I have been fortunate enough to behold this connection. Not many weeks ago Sophie and this young man attended a party for their other close friend. It was a big beautiful event. We soon noticed that the boy did not want to walk into the backyard where the festivities were. Sophie and I walked to the front and I told his mom that we would sit with him so that she could go in and say hello. I tried all my tricks to cajole him into the party, I even stooped so low as to bring out Emily (they all love her) to see if she could convince him. Soon after that Sophie got down face to face with him and said do you feel nervous? scared? are you afraid? He nodded his head. She put her hand lightly on his arm and responded come with me, I understand. I feel the same way. We can stay together and we wont be afraid.
 This is the very same child who demanded I make her lunch a few weeks ago, when I softly explained that I had a horrible headache and that Daddy would make her lunch she abruptly smacked me on the head and said she was mad.
Seeing the tender way Sophie is interacting with her friend shows me that she has empathy
My point is she connects. She understands her friends. She is in the wonderful words of Temple Grandin, Different Not Less.

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

?referrer=

Cracks~A Bittersweet Few Days

There is a Leonard Cohen quote I love that goes ‘Everything has cracks in it, that’s how the light gets in’. I have found this to be true so many times.

Something really terrible happened this week. A young couple we know had a baby on Monday.  At the time I thought how could they be having a baby they are So young. I then realized that they are the same age I was when I had Emily. The joy of the birth was short lived. On Thursday just three short days after his birth the baby was taken to the emergency room due to a fever. The young parents were waiting to be seen when the baby stopped breathing. He would stop breathing several more times over the next hour. He was transferred to Children’s Hospital and has been there ever since. The roller coaster ride of emotions this mom and dad are on touches my heart very deeply. I am all too familiar with the unanswered questions of why, how, when will we know. The four Ozzies have been doing what we can to help. We pray, call and text support, Emily has gone to sit with parents, as she is a close friend, Bill and I have put out the call for blood and platelet donors- this feels like nothing, a drop in the sea of their despair.

Wednesday Emily and Sophie were bickering as siblings often do. Sophie would touch something of Emily’s and Em would shout ‘don’t touch that it’s mine’!  Of course Sophie did it again and then Emily marched into Sophie’s room and grabbed one of her precious action figures. I then began to hear, MOM!!! Tell her to stop, MOM!! She started it- the anthem so siblings the world over. I had to giggle. My girls are nine years apart in age and since Sophie’s birth I’ve heard, I bet they NEVER fight. They do, they are sisters and in typical sister fashion they exactly how to pick at each other’s figurative tender spots. In the labyrinth of appointments, classes and therapies that is our norm these common shots of family bring me solace.

Then Thursday happened. Emily began texting me asking questions and giving me updates. I was hanging out with my friend ‘H’, our girls take social skills together so we take advantage of the kid free time to hang out.  When Em got off work she drove to the hospital to hug the mama and lend her support. The prognosis for the baby surviving the night was not great and I stayed up until after 1am to wait for Emily.

That was the crack. The deep gash that reminds us all how threadlike the line between life and death can be.  Friday morning the light poured in. We came to life striving to do better this day. Appreciating all things large and tiny. Emily called to ask if her sister had plans that afternoon she wanted to take her swimming.  When I inquired as to why the sisters date, why today? Her eyes had a spark to them, a light. I knew then that the struggle she was witnessing had cracked something in her and she remembered her deep perfect love for her sister.  Two sisters sharing love and adventures. When the light comes though the cracks it illuminates what we have, the things we sometimes forget about in the daily thrust to get things done. Thank goodness everything has cracks.

Am I doing the best I can?- Post by Bill

 

I wonder every day if I am doing the best I can. 

 

Today as I was driving off to catch the train I got to the end of our street and my oldest daughter was driving back home from one of her early morning jobs, as we drove by each other we just kind of looked at each other and gave each other a smile and a wave….I got to thinking “am I doing the best I can?”.

 

I’m a husband and a father to two beautiful daughters one who is Autistic, one who is not.  I guess we are kind of lucky in a way because we “decided” to have our girls 9 ½ years apart so really they are like 2 only children.  I remember thinking back when we had Emily at 25 that I’m still going to be young when she is young adult! and we can do cool things together!

 

Emily had a pretty typical childhood (remember I stopped using the word “normal”) she danced, she ice skated, she was in the girl scouts and I coached her soccer team when she played. Aimee was her Brownie leader and did all the mom things with her, I’d like to think she had a great childhood, we were both there just for her for her first 10 years of life.  Even when Sophie was born Emily still had her routines, her friends, her sleep overs, her lessons. As time went on and they both grew older and we started to notice things about Sophie, as you may know or not Sophie was not diagnosed with ASD until she was 10 years old, Emily was 19 at this point, already a young woman, growing every day having graduated high school and making plans for college.  

 

As time went on, Sophie required more and more care, there were appointments to take her to, Doctors, special schools, therapy appointments, special social skill classes.  Aimee takes care of ALL these appointments the running around, making sure she gets what she needs, I still don’t know where she gets the energy sometimes just to deal with Sophie’s needs let alone taking care of our home and us.   I guess it’s fair to say that as this went on and Emily got more and more dependent she really didn’t need mom and dad.  Sure we go out to a movie and sushi once in a while just her and I and I know Aimee takes her to get a manicure or shopping at times but I wonder “am I doing the best I can” as a father to her now?  We don’t see each other as much even though she still lives at home and we don’t hug or kiss as often as we did when she was little, I miss her hugs but maybe that’s a part of growing up? Maybe she knows that we can’t give her our 100% because of Sophie, maybe this is her way of toughing herself up?

 

She’s my daughter and most say she looks just like me (in a good pretty way of course) so it’s only natural that we share the same interest like our love for Hockey, she knows MORE than most hockey fans do and YES that makes this hockey playing dad proud! We love a great craft beer and weird sic-fi-ish shows like Lost, or The Leftovers.  I felt bad the other night because one of the shows I got into caught her interest too (I knew it would) and she started watching it with me, a few days went by and she asked if we could watch the following episode I DVR’d, I was SO happy to say yes.  We started watching after 9pm and since Sophie goes to sleep at 8pm my body had kind of set itself to know that once she is down, Aimee especially and myself can RELAX, she’s asleep…we don’t have to worry, but  then again this is when our brains and body say “ok time to shut down and re-charge” so as I started to watch and I started to doze off….at one point Emily said “C’mon dad stay awake!” not in a mean way but in a way like “I’m trying to be with you but you are too tired for me?” I struggled through the episode and when it ended I told her goodnight and that I love her, I went off to be and fell RIGHT to sleep leaving her alone in the living room watching TV…am I doing the best I can?   She’s always asking me to join the gym with her, I know it’s to get healthy but I know it’s to be together too, but at times I can barely get up to go to work, how will I find the energy to work out? I must find it…

 

It’s hard just being yourself…a bit harder when you get married then a bit more when you have kids.  I LOVE my job and am so grateful for it but it keeps me away from home for 12 hours a day, that’s 12 hours I am not there to help out Aimee, to help Sophie or to just be Dad to Emily.

 

This morning my only thought was am I doing the best I can? Am I being the best husband I can be? the best friend to my wife I can be? the best father to Emily and to Sophie?  In my opinion I say no, I’m not, I can do sooo much more but most of the time I just feel beaten down by day to day life.  I guess I’m writing this to kick myself in the ass, to wake myself up, it’s time to do MORE, I know I can, I know I will.  I just hope my wife and my daughters both know how much I love them and how much I want to do for them, there isn’t anything in the world I wouldn’t do for these 3 women in my life, I hope they do know this,  I just need to show it more, say it more and I need to find the time and energy to do my best, and to give them the best I can.

 

 

A Journey- How we finally were able to get a Diagnosis

 

Our path to getting Sophie a diagnosis was very, very long. We began to notice things were "off" when she was 2 years old. As a mother I knew something was not right, but I couldn't put my finger on it. We started out at Kaiser Permanente, in their Early Autism program. She bounced out because she was too "chatty". Our next stop was the Regional Center, again she talked too much. Many people told me to calm down. Other mothers said she is just a curious child,” Kids ask a lot of questions” one friend said. She was a pleasant child and appeared happy,  but only Bill and I had seen the fits of rage, the hitting herself in the head over and over, the obsession she had with smells and scents, the way she ate dirt and other non food substances, listened to her cry because her clothes were scratchy. One morning I found a baggie shoved under her bed full of metal pencil tops she had bitten off.
      She had several problems in Pre-school and I was told it was all defiance, a strong will and that she was just plain bad. A semester in Pre-K had me crying every day upon drop off and pick up. Every day when I picked her up the teacher would list her crimes and I would hang my head lower in shame at the terrible job I was doing to mother this child.  The very first day of Kindergarten the school principal called me. Sophie was in her office and had been acting out all morning. Back to Kaiser we went for another screening then to the Regional Center, but no answers. Sophie: a “naughty girl” still to chatty to be Autistic.

     In first grade we began our journey with L.A.U.S.D and their I.E.P process. The results Fights, Arguments, and Sitting in a room having people tell you all the things your child can not do. After years of zero help and Sophie being Passed along grade after grade we finally reached our breaking point with our lost and chatty Sophie.

In the summer of 2010 Sophie was practically non verbal. She would pull her sweatshirt over her head, she began having auditory hallucinations, severe panic attacks and started cutting herself. Her bad brain, as she called it, was telling her to kill mommy (it's always the mom, isn't it?) Her therapist suggested we call the partial inpatient pysch unit at UCLA and have her admitted. She thought Sophie either had early onset bipolar disorder or childhood Schizophrenia. Sophie was admitted to UCLA in September 2010, and, she stayed for a month.
Mid-way through the month UCLA called Bill and I into a family/team meeting. In this horrible yellow room they told us Sophie had an Intellectual Disability and Autism. My heart shattered listening to the doctor speak, tears flowing down my face. I remember looking at Bill and thinking this is not real. We cried, in the deepest part of me I knew this was what had been hurting my child. We accepted this because we finally had an answer. We stayed at home and we stopped seeing friends. Being my pro active self we soon found a school for Sophie which L.A.U.S.D would fund.  We searched for therapies, classes, groups, parent programs anything to help Sophie and about 18 months later we re-entered the world. 

She now has friends at school, goes to school dances and has even been in a play. She attends a social skills class built around a cooking course, recently began taking swimming lessons and is a group just for teens with Special Needs.

Let Me Tell You About My Friends-Post by Aimee

I wrote a post the other day about Sensory Issues. Scratch that. I thought I wrote a post about Sensory Issues and that was all it was about. Just a couple hours after I had posted it my phone began ringing and ringing. I was in Costco so I didn’t answer, then I started to get texts all of these were from my friend ‘C’. I finally texted back to ask what was going on and she urged me to request a behaviorist. She saw and read what I could not see. Certain things I had just begun to accept as sensory seeking were in fact behaviors that could be worked on. As soon as she said this I began to get that familiar nervous knot in my stomach. I didn’t want to make phone calls, write emails and ask for help; not because I don’t believe ‘C’ but because I am afraid of rocking the boat. What ‘C’ helped me see is that I am not just asking for fun but because this is help my daughter really needs. I am telling this story because the only way I get through this stuff is with help from my friends.

What I really want to tell you about is the remarkable village of women I belong to. I am surrounded by strong lady warriors. Women from all walks of life who never let me fall. Some are mothers of other special needs children, like ‘C’ and ‘H’. These two have showed me the ropes in so many ways. They have listened to me cry about not knowing how to get help or what to do. We have laughed together at the quirky things our kids do and our families have celebrated together. Because of them I have been able to direct other moms to things that may work for them. Others are mothers of typical boys and girls. While they may not completely understand all our challenges they know my family and accept us as we are. These women sit patiently as Sophie asks them the same question over and over. They smile as she pulls toy after toy from her overfilled pockets. Hell, most of them even let Sophie sniff their hair! Then there are my miraculous sisters! They are not my sisters by blood or marriage we share a much stronger common bond. First on the list is ‘MB’; she is a cross between a fairy godmother and mischievous pixie. Her eyes sparkle when she talks to Sophie. She listens with her whole self and because of this she is one of Sophie’s favorite people. ‘A’ is a super awesome Canadian transplant that Sophie likes to talk Mexican food with. There is a beautiful young woman who talks to Sophie on the phone and was able to come teach her art for a while. I have a friend she calls her beach buddy and on days when we all at the beach together the two of them stand at the water’s edge and stare out at the sea. One of the women is a pretty blonde educational therapist whom Sophie is extremely drawn to. I am not exaggerating at all when I say that there are dozens of friends like this I could write about.  All of the women are so much more than just nice to Sophie. They are my life line. They really want to know how I am feeling when they ask. I can tell all of them that my day stinks or that I feel sad. I can share my joys and gratitude with them. I am thankful every single day for all the above mentioned women and for all the incredible friends I have because the only way I get by is with a little help from my friends.

 

OUCH!!! And Other Sensory Lessons I've Learned

I have been bitten, pinched, smacked, head butted, licked, sniffed, had my breasts groped, hair pulled and my bottom squeezed. No I was not trying to exit a crowded dance club I may have been grocery shopping or putting away dishes when most of these deeds were done. Sophie has a sensory processing disorder. This means her brain has trouble receiving and responding to information that comes through her senses. Sometimes she is overly sensitive to things in her environment.

When she was three we took a road trip to Yellowstone. At the first hotel she grabbed the tiny bar of soap provided and smelled for the rest of the twelve day trip. At one point the slippery soap flew from her hand in the car, she began to scream and cry. Bill had to pull over and I had to crawl around the mini-van searching for the soap. She hated Yellowstone with its strong smelling sulfur caldrons.  Sobbing and yelling out, no more yucky poo-poo most of the time we were there.

Loud noises also affect her. Fire alarms, sirens, and the thundering volume in theaters are a challenge for her. As I said in a previous post our most successful dining out venture on vacation was when we used ear plugs to her manage the volume. We called her ‘the sleeper’ the one and only season she tried soccer. The stimulus of the other kids hollering coupled with them running towards her caused Sophie to simply lie on the field covering her head.

We noticed very early on that she took little notice of things like very hot/cold water. Injuries that appeared to be painful she did not pay attention to. On the other hand a tag in a tee-shirt would send her into a fit of rage and tears that could last an hour. I became brand loyal to Hanes No Tags Shirts. Hair brushing is still an ordeal no matter how much No More Tangles I use.

Her difficulty interrupting sensations from her muscles or joints, causes her to bite and smell her toys, tackle others (mostly me)stand too close when talking to people, hit too hard, bite and ram her head into me. She often stomps and jumps in the house resulting in pictures, vases and knick knacks toppling over.

I try and remember these things when I find myself a victim of her sensory seeking behaviors but I am only human. It hurts. She is almost as tall as me and over one hundred pounds if I am not expecting it she can knock me down. Some days I want to push back, slap her or bite her too. Those are the times when I have learned to just walk away. This is what happened yesterday upon our return from the beach. We had just a few moments to get her changed and ready for her Teen social group- this was my first mistake not leaving enough transition time. I was attempting to rinse the sand from her feet so I was bent forward when suddenly……..BAM! Her head bangs into me catching me in that tender spot right above my eyebrow. Tears immediately spring to my eyes. Taking a breath I stand and walk out of the bathroom. 

It is hard not to react. It is embarrassing to stand in line at the store while your fourteen year old daughter tries to put her hand down your shirt or is licking your arm, ignore the harsh stares when others overhear me saying You may not bite. I have to remind myself it is not her fault, she is not trying to hurt or draw attention to us. Some days are just tougher than others.