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.

 

Vacations- Post by Aimee

Vacations

Bill and I like vacations. We love car trips and have taken several. We’ve driven with the kids to Yellowstone, New Mexico, Wyoming and twice to Oregon.  People ask if we have a DVD player in the car. We do not. Most people seem perplexed as to what four people in a car would do all day, especially with a kid like Sophie. Let me tell you these road trips are pieces of pure gold. We laugh, listen to NPR radio shows, I read aloud to the family and we share secret jokes that only the four of us know. Vacations are special to me.

This year we’ve decided to come to Palm Springs for a few days.  This should be super simple. Two hours away. A hotel Sophie is familiar with and likes. No problem.  So why do I feel like taking a trip is like climbing a mountain with a shoestring instead of a rope?

 Let me begin with the anxiety it provokes in Sophie. She becomes so worked up that the time leading up to the foray is akin to be questioned by FBI. Where will go? When will we go? How long will it take? When will we go? What room will we have? How long will it take?  You get my drift. Packing is a gargantuan mission. I have to remember the medications, the toys, the night lights. Let me tell you that I have forgotten the underwear on more than one occasion, hers and mine!

Upon arrival there is much jumping, sniffing of me and others, pacing the room, smelling things in the room, questions about the lights and if they can be kept on all night. I try and unpack as quickly and as efficiently as I can all while Sophie is asking me rapid fire questions if I hesitate when answering it leads to more questions along the line of why are you ignoring me? Don’t you love me? She is pulling on my clothes this whole time and more than once I get choked by my shirt as I try and move towards the dresser.

 Once settled we decided to go for a swim. Bathing suits on, sunscreen was applied and flip flopped feet set off for the pool. Since it is well over one hundred degrees the pool is the place to be. We locate some lounge chairs and prepare to sit down but first I need to locate Sophie’s goggles, she has not yet put her face in the water, help her off with her shorts, get her some ice water and put her hat on.  She walks to the “baby” pool. I sit down making sure I can see her and as soon as I lean back she calls “Mom, I need my water”  I take the water and come back preparing to open my magazine and hear, “Mom, I am hungry”  “Mom, I have to go to the bathroom” “Mom, I need more water” “Mom, watch this” Mom, Mom, Mom. I want to change my name.

Dinner time is next. Please note that Sophie enjoys only ONE restaurant; Islands. Islands is a chain of burger joints with a surf theme. My mom takes her there every Wednesday and she always orders the same meal; Tortilla soup no cheese add a side of jalapeno peppers, tortilla chips and a small spoon. Naively we decide a Mexican restaurant is a good choice since they may have tortilla soup. WRONG!

The place is very charming but also very loud. This causes Sophie to stim, flick us, smell us, make high pitched noises and bounce up and down. Then I remember the little gem I packed into my purse……Earplugs! After a few minutes of debate she allows me to put them in and it’s incredible. She becomes mild, her hands quiet, her bouncing slows and we are able to have a meal.

For the next five days we live somewhere between the deluxe land of pampered hote  life and meltdown reef. It is balancing act but isn’t so much of life? Don’t we all strive to hit the sweet spot between working and home life, health and indulgence and dreaming and reality?

Taking Sophie on vacation is not easy but boy is it worth it. If we had not been on vacation we would have missed her putting her face into the pool for the first time. We would not have had tickle fights on the big hotel bed and we would not have had the chance to add more memories. Most importantly we would not have had the opportunity to help Sophie grow and experience things out of her comfort zone.

 

Sophie's Sister- post by Emily

                                   
I was an only child for almost 10 years, to say the least I was an "easy" baby for my young parents. I started sleeping through the night at 6 weeks, gave up my "passie" at 3 months, started walking at 10 months, and started kindergarten at the age of 4 because my mom said I was "bored" in pre-k. However, when I was just 9 1/2 my parents had my sister Sophie. I was excited to be a big sister, finally someone to play with, my real life baby doll to take care of. I was a little jealous of the attention I knew my sister would get when she was born, and even told my parents that if she had the same big dimples as me I would fill hers up with cream cheese, but nevertheless my eyes grew big and my heart melted the first time I held Sophie in my arms.

As life progressed and I moved on from elementary school to middle school, Sophie also grew into a healthy funny little sister. My friends would always say "Sophie is so silly", "She is so cool", "I wish I was as cool as her when I was little". Although I was envious of my sisters bursting personality at such a young age and her eccentric attitude to march to her own beat, I smiled inside and loved to show my sister off because she really is and was so much cooler than me. She would wear silly outfits around the house and out on errands, even letting me and my friends put wigs and glasses on her to make us laugh.

  As Sophie moved into elementary school and I into High School she still remained the coolest little sister and my friends were her biggest fans. They did not think it was strange she would carry little toys in her pockets, hold onto rocks she found on the ground, or even sniff dryer sheets periodically throughout the day. And to tell you the truth neither did I, I just thought "wow my sister is so cool". I danced my entire life and as we dragged her along to dance competitions she would remain the star, never shy to make up her own moves and show all my team mates. However, my parents knew something was different, something was off, but again I am almost 10 years older than her and basically lived as an only child so I did not see the same challenges my parents saw and the differences of Sophie's development compared to mine. I just thought that my parents did not understand her and that being her sister I knew what she was saying, wanting, and asking for. I thought I could just relate to her better, like we had a special sisterly bond that my parents would never understand, and that they thought because she was different than me that something was "wrong". But I was wrong.

My parents fought for a long time to get a diagnosis for my sister, to find her help, and to get her into a school where she fits in. Even after my sister was diagnosed with Autism and intellectual disability I never stopped thinking my sister was the coolest sister in the world, and luckily neither did my friends. When old friends see Sophie again and new friends meet her they still say "Sophie is so silly", "She is so cool". She marches to her own beat still and inspires me to do the same. We still have our own language, our own connection that my parents will never understand. I know what she is saying, what she wants, and what she means, even when my parents are frustrated beyond belief. I am able to explain to my sister what my mom and dad can not, and I'm not sure if it is because of the special sisterly bond I always wanted, or because she is part of me and while our brains work differently they also work the same.

I know my sister may never have the same opportunities as me. She may never get married, have children, live on her own, have a job, or go to college, but she will always have friends that love her. She will have her own friends and she will have mine, because where I go she will come too. I am very vocal with my parents in telling them how important it is for my sister to do simple tasks on her own. While my parents are mentally and physically exhausted at times to have the patience to teach my sister I always step in to help. I taught Sophie how to tie her shoes, make her own sandwich, and am working on fixing her own hair. While I know she will never really be alone I do not want her to me helpless, because she is able. Despite her intellectual disability I believe in her too much, and push her to be independent and able on her own. As Temple Grandin's mother always told Temple, "you are different but not less" and that is exactly what Sophie is...different but NEVER less.

 

A Ride on the Morning Train-Post By Bill

 


 
     The train gives you time to think…when people say “how are you” I usually say “Great! Or Good!” I rarely say what I want to say, that I’m tired, exhausted, because those words are just used too much these days by people.  When I say I’m tired or exhausted its because there is rarely a time in the day in the last 4 years that Sophie isn’t on my mind, that I worry about her, of course I worry about Emily but I know she is “normal” or what we are supposed to say now “Typical”,  she can defend herself, she can make right and wrong decisions, she is an AMAZING young lady and I’m so very proud of her.  For Sophie I worry, will people take advantage of her, will people hurt her, are we doing enough? Is she getting the support she needs? The Doctors? Are the meds she’s on helping her? Hurting her? Maybe if I made more money I could get better Doctors? Better care? Then I start to doubt myself, feel like a bad father, husband, sometimes I feel like I don’t want to go home, it’s too loud, it’s too “crazy”…I think and think and it starts to wear on you, not just emotionally but physically, it gets harder to get up, you get 6, 8, 10 hours sleep and it feels like it’s not enough…worry…worry in your sleep…who will take care of her when I gone? Will she have a “normal” life? Get married? Have kids? Just wondering will she ever really understand or know what “love” is? To love someone else? How will she make it in life? She’s 14 and has no concept of money, of time, what’s real on TV and real in life, will other people make fun of her? Does she feel bad? I don’t know and for all the worrying I do I think of what must be going through her little mind, must be 1000 times more, no wonder she’s out at 8pm.  Man I love that little face, last night as she slept I snuck in and just stared at her, she was so quiet, so peaceful, it made me smile….worry.  You start to shut down, you avoid things, you lose interest in activities you once LOVED…yes hockey.  People think of you of as the “funny guy” …things aren’t so funny to you anymore. “date night” was fun, you’d go out see a movie have some dinner meet with friends…now some take out and quiet time (because quiet time is special, its rare in our house)… and bed by 8:30 is what it turns out to be…Tired, exhausted, those words bring on a new meaning…you avoid social events, friends, public places, “it’s easier if we don’t go, let’s just stay home we don’t want to explain, or get stared at” EVERYTHING is a struggle. You go out with friends and their “typical” kids, you see the difference and it breaks your heart, makes me sad sometimes (bullshit all the time) sometimes the other kids are younger and you see how much more developed they are…..thinking, worrying….. then you think why would God do this? Make your child, make ANY child like this, make it hard on families, make the problems, strain on finances pull a family apart? Then you hear “God picked you guys because he knew you could handle it” bull shit, I can’t…….you start thinking there is no God…you lose faith, ok lost faith…thinking, worrying…man I’m tired, sleep sounds good…I wake up each morning and look in the mirror, more gray, more wrinkles, bags under my eyes…”man do I look even older?” is this aging me faster than normal?  “hey let’s get some beers after work”…you make up excuses not to go…just too tired…exhausted…worry…but hey how are you today? J Have a great day all!!!! And oh yea GO KINGS GO!!!

Feelings- Our Day at The Library- Post By Aimee

    

Feelings seem to happen when you least expect them. You are going along, having a life, living each day and then BAM! Feelings hit you right smack in the face. Some are happy like the way your stomach drops and makes you laugh when you hit a dip in the road and some are just downright confusing and hard to comprehend.

The hard to comprehend type is what happened to me today.  I had planned on taking Sophie to the beach today but it was gray and breezy out so I let her sleep in and then suggested a trip to the library. She’s not been much of a reader but I know she likes to look at books and thought maybe I could find something to spark an interest. The first hurdle I hit was that my child doesn’t really understand what a library is.  She knows there are books there but that’s about it. Where are the comics? She asked. How about parrots? Are there books about parrots? I want to see the picture books. Is this for babies? Will they let me in? How about comics? What about parrots? Why do I have to be quiet? This went on and on as we walked up and down the aisles searching for something.  Finally by the computers she saw some comic-type books. This was good it made her very happy and she eyed those for awhile. Then she becomes obsessed with the “wimpy kid” books. Fair enough they are nearby on a spinning rack. I sit down beside her to let her take her time.  After she had picked out three books I asked her to walk with me while I look in the “grown up” section.

We turned the corner and I see a familiar face, the gentle, kind face of a woman whose daughter attended kindergarten with Sophie.  She smiles and warmly greets us. Comments on how tall Sophie is and then asks if she is ready for High School. At this point my heart breaks a little. My girl standing there hopping from foot to foot with some second grade reading material in her hands. “Oh-no, not yet” I say and quickly ask about her kids. One just about to leave for college and one about to start High School.  Am I jealous? Do I feel like I had lost at that mommy competition game? No, I think I am just struck with the huge gap between “normal” and my sweet girl. It’s easier to stay in my little community of Special needs moms. We all get each other. We can laugh at our kid’s quirks and stims, we can groan at the same toddler type meltdowns transpiring in large adolescent bodies and we can cry with joy at little victories like our kids ordering their own dinner.  This poor woman doesn’t know what to say other than “wow, she sure is tall”

As I write this the feelings are still swirling around me. I am happy we went on an outing. I am glad she found some books. I am relieved she doesn’t scream that she can’t find something and we were on our way out. Then I am Sad. So very sad at how far behind she is. So sad that that this group of moms and (their normal) kids have surpassed us. I am confused. Confused because I thought we were having a good day.

As we walked to the car I took a deep breath and asked Sophie if she would like to get Frozen Yogurt before lunch. She laughs and yells YES! We get into the car and she opens a book about a young girl who is a mad scientist and she begins to read! She reads and reads and reads out loud to me.  We may have been left behind but this is something. I never thought I would hear my girl reading to me. Now I feel proud and grateful. I know we had a good day!