Two Business Days- My struggle with IHSS Post by Aimee

The state of California has a program called In Home Support Services (IHSS). This is a program to help people with disabilities remain in their own home or to help pay for out of home care. We are eligible for this due to Sophie's diagnosis.
Like so many state funded programs the paperwork is very overwhelming, at times it is exhausting. The maze to complete the initial paperwork required me to think positive, read, read, read, give myself daily pep talks and ask several friends for help. Eighteen months ago I completed everything including the half day training required for me to be Sophie's care provider.  Things have been going along swimmingly, well that is until the last week of December.
Bill is a fantastic husband. He enjoys sweeping, vacuuming and "tidying up". It's that last one that gets us all in trouble. I am the type of worker who enjoys lists and small to do piles. As I work here at home I lay things out that I need to take care of or that require some kind attention. This system has worked fine for us for over twenty years, I mean it did work except for this calamitous day in December.
On Sunday December 28, 2014 I was getting all my paperwork in order for the coming week when I noticed my new time sheet from IHSS was missing. I began to move things around looking for it, Sophie's homework, a note pad, a party invitation......nothing. My search became more frenzied and I moved to my desk to look...nothing. Please understand I am in no way now or was I then accusing Bill of tossing this most important piece of paper but he does have a reputation for "cleaning up". The discussion that followed is a whole different blog suffice it to say no one has claimed responsibility for touching the time sheet.
All right I'll just call in the morning and request a new one, this must have happened to other people.
Monday December 29 I begin calling at 9:00am. I placed 65 calls all with no answer or a machine telling me how important my call is and to please hold the line. I am patient I can make phone calls I will just try again in the morning.
Tuesday December 30 I call at 9am to hear the same message as the day before. 9:10am I call again and a live person answers the phone! I explain to the woman that my time card has been misplaced and request a new one. She informs me that I must call a Ms Jones* and proceeds to give me her number. I am feeling a bit smug now as I think, Piece of cake one more call and I am done. I dial Ms Jones number only to be greeted by her voice mail. Let me explain this voice mail message of hers; It begins with a sound as if the phone is being thrown onto the floor then comes her voice. To say she speaks slowly is an understatement. Read this as slow as you can to get the idea, "hello this is Ms Jones. I cannot take your call now.....but if you leave me a message I will call you back in two business days....if I do not call you back in two business days please call my supervisor Ms Smith* at three.....one....oh....five....five...five...six....two...four...nine........." So I leave a message with my name, my child's name, my provider number, my case number, my phone number and a request for a replacement time card.
January 2, 2015 I have not received my return call and it has been more than two business days so I call Ms Jones again, wait through the long message and once again leave my information. There was a holiday during the week and I don't want her to get into trouble so I decide not to call Ms Smith. I hang up thinking I am sure she will call this afternoon.
January 6, 2015 Still no call back. Once again I call Ms Jones, the message now seems endless. I feel as if I have been on the phone for an hour before I hear the beep- again I leave my message with a urging in my voice to call back.  I now decide that it is time to call her supervisor Ms Smith, no more playing nice she must learn to return calls. I dial Ms Smith her phone rings and rings and rings. There is no answer and no message. I call back. This time there is a message, she too is unable to answer the phone but assures me that she will return my call in two business days, if she fails to return my call I am instructed to call HER supervisor Ms Johnson.  I jot the number down sure I won't need it.
January 9 No calls! None! I begin again, first Ms Jones and her drawn-out message. I am not holding back today next I dial Ms Smith leave her another message remaindering her that this is my second call to her and I have yet to hear back from Ms Jones even though more than two business days have passed. Now for the big guns Ms Johnson. I will be sweet and polite, assure her that the other ladies are probably just busy and while I don't want to be a pest I really do need my replacement time card. I take a deep breath and her phone just rings. It rings for almost five straight minutes before a voice comes on to tell me her mailbox is full. FULL?!?!?!?!? No chance to leave my message, no promise of a call in two business days nothing!
January 13 Desperate I call my friend, another special needs mom, who also receives IHSS and ask her what to do. "Don't go there'! she yells, "I lost my card once and went there and they won't even look at you. Here call these two numbers" I call the two numbers she has given me. The first one is out for an undetermined amount of time but feel free to leave a message, I leave a message. The second has a message proclaiming her the head of IHSS time sheets (yes) she also asks me to leave a message with all my information and numbers etcetera and she will call me back.....in two business days.  I am beginning to lose it a little.
January 16 I make the rounds of calls again. Now my voice is sad and hope is fading that I will receive a call in two business days.
January 20 No calls made or received
January 26 I begin my calls at 9am. When I get to the beep on Ms Jones' voice mail I beg, BEG her to call me back. I actually say, "I am BEGGING you to call me back!!!! If you can not help me please tell me who can"
January 28 Emily tells me to call my union. Yep, us long term care providers have a union. I call. The lovely woman who promptly answers her phone tells me to call...a Ms Jones. I quickly explain that I have been calling her, her supervisor, her supervisors supervisor. She puts me on hold.  When she calls back she advises me to call my social worker. I look for his number and call him. I get his voice mail.....He will return my call in two business days.
January 29 This was a gut wrenching very hard day for me and the family. We attended  a memorial for a young man we all loved very much. Feelings and tensions were running high by the time we returned home. I was sobbing. Bill was crying. Emily was crying. We began to argue among ourselves, My emotions boil over and I cry, body shaking sobs when my phone rings I pick it up and am about to hit the silence button when I notice the number.....the very familiar looking number. This is my chance! My one and only chance! Pull it together I tell myself. I go from crying to a very clear, very professional, "Hello" in a half a second.  It's my social worker!!!!! Replacement time cards he asks? Sure, I'll send them right out!  He called back and in only one business day!!!!

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.

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.

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.

 

 

What we can't see, Some disaibities aren't visible- post by Bill

I just saw and re-posted a funny cartoon the other day on Face Book of a mom on the phone and someone saying “Really? She doesn’t look like she has Autism?”  The mom replies, “Oh, it’s the way we dress her that hides it” We get this all the time, Sophie doesn’t look autistic? She looks normal Of course most of the time this comes from someone who has only spent 10 minutes with her, or a well meaning friend who has only seen a few times but has never really spent more than an hour or two with her. After an hour or so they start to “notice” something.  I once had a retired school teacher at a party say to me after speaking to Sophie for just a few moments say, your child is….. Odd. Gee thanks!!! Parents L O V E to hear that their child is odd.

 This got me thinking, is not looking disabled enough a disability in itself?  I’m sure we have ALL seen that man or woman get out of a car that has a handicap tag on it and we think, well they look perfectly healthy? They have to be cheating. Lying bastards! They should be ashamed of themselves!  The thing is we do not always know what’s wrong with them. More often than not we would rather judge them then take a moment to ask if they need help.  I know I used to think this way. I say “used to” because since Sophie was diagnosed I try and see the whole picture.  I don’t make up my mind so fast, I take a second to think maybe that person suffers from seizures, has a weak heart, an autoimmune disease or some type of mental issue (of course if they have a mental issue  why are they driving? But that’s another subject) That person could have so many other issues that we don’t know of  because we just look at what’s on the outside and make our decision in a flash.   We need to take a step back and consider all the possibilities and not be so quick to judge or come up with your own conclusion. 

 Aimee points out from time to time how much easier it would be to explain if Sophie had a “visible” disability. Perhaps we wouldn’t get the stares that say wow that kid is a spoiled brat or did you see those terrible parents.  The fact may be that Sophie may have only gotten a few hours of sleep the night before because her medication upset her stomach, her little mind was SO obsessed with something the night before or she is just too stimulated by the loud and noisy crowds.   what you see now isn’t a tantrum or our lack or parenting, it’s her reacting, trying to calm and soothe herself, that is why she is “stimming” or “chirping” uncontrollably, or just basically shutting down and not listening which could look like to many other parents like she is  just not behaving. 

 

If Sophie were blind I am sure people would put out their hands to help her. Mothers would make sure she did not fall. Dads would watch to that she did not wander into traffic. Store clerks would wait more patiently while she counted out her money or took a few extra minutes to make her choices. People would be more understanding.

Sophie is a pretty functional Autistic young lady.  She is, as most of you who know her, the complete OPPOSITE of nonverbal (this is also a topic for another day) but that’s what makes our little Sophie unique and we would never change that.  I guess I wrote this to just point out that what you see isn’t all you get. Take a second to look past what’s in front of you.

 Remember just because a person isn’t blind doesn’t mean they don’t need you to hold out your hand to them from time to time, and just because a person doesn’t “look” handicap doesn’t mean they won’t benefit from you taking time out of your busy day and just giving them a smile.  In fact next time you see someone who may need a smile, think of our Sophie and give them one.

 

 

The "A" Card

Well I finally did it….. I pulled the “A Card”. 

Aimee and I swore long ago that we would never use our child’s “disability” to somehow benefit from it, for example getting a handicap plate for our car and parking where ever we want to.  You may be saying to yourself just because one is Autistic, it doesn’t entitle them to a handicap plate BUT if your Autistic child is the kind of child that would run away from you or can’t pay enough attention to traffic or is easily distracted by loud noises, freaks out, has anxiety, then they CAN get a handicap plate. Aimee and I both know that we do not really need one; we just have to really watch her, pay attention, and hold her hand.  We know there are SO many children out there that DO need that plate because of a physical disability, so we choose NOT to get one.
 

Since I switched jobs in May I really couldn’t schedule the time off I usually do for our summer vacation, so we decided to take a short trip to Palm Springs, it’s a place we all know, a place where Sophie feels safe, where she knows what to expect so we packed up took off for the beautiful La Quinta Resort and Spa!  Now let’s just say it was a bit hot there last week…average of 106 degrees. Although she really doesn’t swim per say….Sophie LOVES to be in the pool, La Quinta is great for this as they have 41 pools on the property!  Of course nothing is ever “normal” or should I say “typical” in our family so when I say that Sophie loves to swim it means that once we arrive at the resort, Sophie becomes OBSESSED with going to the pool. This would be a question she would ask us 10, 15, 20 times a day, yeah I know “kids ask a lot of questions, that’s what kids do” (a friend once told me that in regards to Sophie asking questions over and over).  Sophie is SO obsessed with the swimming; she would ask me if she can still swim WHILE she was swimming…its mentally draining. 

On Friday, which was the fourth of July, I took Sophie to the main pool and tried to give Aimee a break. We didn’t get there until about 10am and by then all the spots with umbrellas were taken. I have to sit nearby and keep a constant eye on Sophie since she really does not know how to swim there wasn’t a shaded spot that I could sit in near enough to the pool in 105 degree heat. I looked around the pool there were only about a dozen umbrellas and more than one hundred chairs. I was trying to be a good dad and helpful husband. I knew that if she did swim we would all have at least 30 minutes of peace that is a lot of time for us; I decided to sit in the heat so Sophie could enjoy her swim.  As I sat in the heat looking around I couldn’t help to think how a Waldorf Astoria Hotel, a MULTI Million dollar property can only offer 12 umbrellas at their main pool? My immediate thought as I am in the Service Industry was, if there is more shade, more people will come and spend more money at the pool bar on drinks and food, how can they not know this? I sat and baked and thought more and more about it .Finally I decided to ask the Pool Manager if there were more umbrellas, when I told him my theory of more shade equals more money he looked at me surprised and said “yeah. right?” and walked away.  At this point I thought why not write an email from my I Phone to the hotel NOT complaining but just pointing out this issue, this is when I did it…. This is when I pulled the “A Card”.

I wrote an email explaining how  WE LOVE THIS HOTEL, it is beautiful, we always come and always will stay here but it’s a bit hard keeping an eye on my daughter, who has autism (A Card), in the pool while I am  sitting in the sun without the benefit of some shade.  I even told them my theory of more shade equals more money.  I didn’t expect anything. I felt I had voiced my compliant and offered them a helpful suggestion at the same time. Then the best thing happened, the hotel manager actually called my cell!!!! First he apologized, I made it clear to him I was NOT complaining, I love your hotel!! I just wanted to point this out and you know what? He agreed! He even sent an umbrella just for us at the main pool and sent additional ones as well for other guests! 

Later in the day I received yet another call from the Concierge asking if there was anything they could do, again I made it clear I was not complaining. The Concierge asked what my child’s name was and asked if she like toys…toys????? All of you who know Sophie know the answer to that!!! I told her about a certain toy that caught her eye at one of the gift shops and about an hour later there was a knock at our door, a hotel employee handed me a gift bag and a card. It was for Sophie! The card first apologized and then thanked me for the suggestion of more shade, and then in the gift bag were 2 of the little figures that Sophie was eyeing earlier that day!!! To say Sophie was excited and happy is putting it mildly!

I love this hotel even more now; they showed they care, not just with the toys but for sending extra shade to the main pool so the other parents could benefit from it. 

Yes. I used “the A card” but I feel I used it for all the best reasons! And who knows….I may use it again someday? Anyone have the number to the LA Kings Ticket office? LOL

 

 

 

 

Our Newest New Normal

When I was fourteen the cost to ride the Big Blue Bus of Santa Monica was twenty-five cents. My friend Laura and I would climb on board and ride the entire loop for hours.  We sat in the back and talked, watched the UCLA students get on and off and stuck our arms out the windows as we sailed past the beach. Sometimes we got off in Westwood and saw a movie. On hot summer days we got off at the beach carrying folding chairs and towels down to the water.  I grew up in an era where these things were possible as long as I got home before the street lights came on no one seemed to mind how I spent my days. This was normal.

When Emily was fourteen she had already been to countless slumber parties, gone away to summer camp multiple times and had been a dedicated and self disciplined dancer for seven years. I always knew where and who she was with and made sure she was supervised. She did not have the freedom that I did as a kid but I did not have to accompany her everywhere she and her pack of girlfriends went. When Emily was fifteen she was accepted to Alvin Ailey in New York City for a summer dance intensive. Bill and I sent her. She is a dancer and this was a dream come true.  She took the bus into New York each morning from Hoboken alone. This was a new normal.

Sophie is fourteen. She has never been to a sleepover. She rarely goes to parties. I do not allow her to cross the street alone. It is uncommon for me to even send her to the next aisle of the supermarket. I never imagined that I would still be walking her to the bathroom in public places, talking her down from tantrums in stores or hushing her verbal tics when people begin to stare. I worry much more about people being cruel to her. My heart aches at the thought of kids teasing her or calling her names.   I keep her next to me because this is the newest new normal. This is what is required for a teen who does not understand what and who a stranger is. She does not have the skills to handle money, has no concept of time.  My girl cannot recall telephone numbers. In so many ways she is several years younger than her age.

 I will let you in on a little secret… I love how much time I get to spend with my teen! A typical fourteen year old would seriously balk at their mom holding their hand to cross the street. Few of them would enjoy having their parents walk them into and out of school and even fewer want their moms hanging out at ‘play dates’. I get witness her life. I attend all her extracurricular classes. The mothers of her friends are my pals and support system. These women get what it means to have a child who is different, they understand the unique tired we feel.  I frequently talk to her teachers and coaches.  I get to observe her at dances, meet her boy crushes and be a very active part of her everyday life. This is our newest normal. Yes it gets tiring to go everywhere with her and to constantly have eyes on her but the reward of really sharing her victories is well worth it.