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.

 

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.