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.