Light it up BLACK

It is exasperating to know that in just a week or so the media will start spinning and spouting endless tales about AUTISM. Talk shows, the news, and social media will be fired up showing mostly "junk" reporting. Reports that have been passed down but not thoroughly researched. Blaming everything but the environment, pesticides and all the contaminated crappy food we eat. Shows and reports on little Amanda who has autism, but gosh have you seen how pretty she paints? Or Bobby who is just so bright, but who cares if he's 24 and has never told his mother he loves her because, oh yeah, he can't.

I should be happy about it, right? After all, it's awareness for our kids. The truth is, I am sick and tired of awareness. I want action. I want meaningful research. I want the truth to be reported. It's not too much to ask. With the number of kids receiving a diagnosis on a daily basis surpassing that of pediatric cancer, aids, and diabetes alone you would think the urgency would be palpable. It's not.

Autism Speaks (in yet another useless move that leads us nowhere) asking everyone to LIGHT IT UP BLUE to CELEBRATE simply makes my blood boil. These structures will be participating:  

CN Tower Toronto CA
Bahrain World Trade Center, Manama,
Al Faisaliyah Center, Riyadh, Saudi Arabia,
Cairo Tower, Cairo, Egypt
Palacio de Bellas Artes, Mexico City
Big Brothers Big Sisters Building Grand Center, St
Paris Stock Exchange, France.
Al Anoud Tower , Riyadh, Saudi Arabia
Terminal Tower, Cleveland OH
Kingdom Tower, Riyadh, Saudi Arabia
Empire State Building, NY
Christ the Redeemer, Brazil
Great Buddha at Hyogo, Kobe, Japan
Rockefeller Center and Top of the Rock Observation Deck™, NY
Sydney Opera House, Australia
Niagara Falls, Ontario, Canada
Canton Tower, Guangzhou, China
Kobe Port Tower, Japan
Hungarian Parliament Building, Budapest, Hungary
New York Stock Exchange, NY

Now imagine for a second that all of the money it took to coordinate this and all of the money it will take to get these structures to light up and stay lit was instead put towards meaningful research or to pay kids therapy and treatment. Now THAT is something to talk about. 

It is absurd that the only thing Autism Speaks can latch on to is "awareness." It's one of the very few things they successfully promote. How is a company so powerful dropping the ball with all the millions they have to work with? We are aware. What happens now? Annoyed by the parents complaining about research? 
Then do some meaningful ones and shut us up. 

I want to make it clear that I do not resent those thousands of parents and even local parents and friends who dedicate their time to AS. I get it. I know many of you. You are trying to do something meaningful. You feel at a loss with autism and feel this is the best way to give it all you have and make a difference. I was there. Gasp! Yes, even I participated and once upon a time even raised money for AS. Luckily I was enlightened as to how little of our money ends up where it's supposed to. I am sick to my stomach that I ever did.

There was a study done that showed that "Mothers of Children with Autism have higher parental stress, psychological distress." It was CO-AUTHORED by Geraldine Dawson who is now the chief science officer of Autism Speaks. Well, no shit. Yes, I am stressed damn it! You are spending our money to prove something we already know? Lighting it up blue amongst campaigns showing children with autism who are happy and smiling will not do anything. How about putting the photo of a 15-year-old in diapers? That's realistic. Or perhaps showing that kid who is a math genius but can't feed himself, comb his hair or even wipe his behind. Lovely isn't it? Let's have them be the poster kids. Let's show the number of kids who were abused this year by teachers because they can't defend themselves. Let's add the stories of restraint and seclusion. Spare me the bullshit and get real.

No, I will not light it up blue. I will light it up BLACK. I will be mourning the precious lives of the children who passed away due to wandering. I will be mourning the precious babies that regressed into autism, but that were born perfectly normal (like my son). I will keep screaming at the top of my lungs that enough is not being done to fight this. 

I want Autism Speaks to stop hiring or consulting with Big Pharma ties as part of their routine. I want AS to put funding towards immunology, toxicology, gastrointestinal, and regression.

On my part, I will talk to as many parents as I can reach. I will tell my story until I am "blue" in the face. I speak to parents about nutrition, therapies, doctors based on all of my experiences in the hopes that other children can perhaps either escape autism or get a huge head start once diagnosed.

For those that have asked about REAL ways to support our fight against autism, my suggestions are as follow:

To donate:

Puzzle Peace Now 

Angels Reach Foundation

D Amor Foundation

National Autism Association

Generation Rescue

TACA

Age of Autism

You can also call up a school or therapy center in your area and ask how you can help. It can be as easy as paper towels or perhaps crayons! Maybe you can donate towards something bigger, but at least you know your money is going straight to the source: our kids!

I am hopeful Autism Speaks changes one day and goes back to its roots and original goals: an organization that was founded by the Wrights for their grandchild. Until then friends, speak up for yourselves!

The Sisterhood of Autism Yoda Moms

A friend who recently came into my life now calls me her "Yoda." I always laugh. For one, she reminds me of myself at her age. No, she looks nothing like me. I wish! She's super hot!  She's more or less the age I was when Kai was diagnosed. She has spunk, energy, and a contagious laugh. Unlike other moms I have met through the years, she takes everything I suggest or mention and almost instantly, analyzes and applies it. She's hungry for knowledge, for action, and she asks a million questions. I should write a book, she says, because "all the information I give her is worth a fortune." I am not sure about that. I am not some crazy mom preaching in every corner. I am just a mom who has gone through a lot of hell through this autism journey. Because of it, I get a lot of questions. Often. Everywhere I go. On Facebook. At the mall. Via text. On the phone. On Twitter. In person. At the supermarket. Other moms refer me to other moms so that we can offer support and share stories. Autism moms have an undeclared sisterhood. Unfortunately, others have paved the way for me and all those new to this life. Even women who are pregnant, with newborns or with kids showing a delay are reaching out to autism moms for advice on how to prevent autism or at the very least, get our opinion on the topic. If only mainstream medicine and organizations with funds for significant studies would reach out as well, we might be on to something now in this autism maze, but I digress.

I met Erika while participating in a mom's group where Quinn attends an extensive mommy and me type program. I find myself sharing and reminiscing a lot with her and the other moms there. Every time they mention something they have a question about ( "vaccines" " diet" "therapy" "depression" " stress"" IEP" "education") it triggers a memory of all I went through when Kai was little, and I can't help but share. Since Kai is now nine and Quinn is only two (and the age of all the kids at the group), it's been quite a while since I was in "that" starting place they are all in now. I guess I just took all of the knowledge I picked up when dealing with Kai 7 years ago for granted. The second I saw Quinn started with a delay, it was on! I instantly knew how to deal with it without the need for a "Yoda" the second time around. 

All of this got me thinking about who my "Yodas" were back then. It was all so hard to navigate. I don't know if I applied everything as quick as my friend has. Perhaps because a lot of it was "new" back then and has become a little more accepted now. I soaked everything in, but sat on the information until I was ready. It's my methodical nature. There was the teacher who gave me a book on autism to read as a "hint" to get him evaluated, the other one who constantly lectured me on "diet" (which I ignored  only to try it years later), the endless Yahoo Groups on Autism where I learned what other parents like me were doing, the book DYLAN'S STORY by Cristin Fergus which kicked me into further action by removing harmful toxic products we were using in our everyday lives, the therapists who insisted and tried different tactics to get him to master tasks, and the teachers who successfully went out of their ways to reach him. Those were some of my Yodas.

It also got me thinking about just how much Kai has overcome since 2004. The work is not done. He still has a lot to learn and conquer, but so much work has already gone into his recovery attempt. Perhaps recovery is not likely (and we know that), but we still try it all to make his life better each day and for his future. I have noticed that the older Kai gets, the sisterhood and finding said Yodas is a little more difficult and sparse. Said sisterhood is now more settled and even more divided. Some kids have moved on and lost the diagnosis. Some of us are still treading water with only brief moments of rest. Some have lost hope and given up altogether. Some don't want to speak to others unless they are following the same treatment avenues or non-treatment avenues they are. Some are overly critical of what other moms choose to try for their kids. I just think it's important to remember that we were all where my new friend is today; in that starting point looking for direction. It's important to be ambassadors to other moms and offer guidance when asked. I am lucky to have a close-knit group of friends that I can still talk to about Kai because they have gone through it with me and are in my same shoes (unfortunately). My best friend also happens to have a child on the spectrum making it easy for me to have my very own go-to, on-demand Yoda. But even being in the same boat, I have also experienced icy receptions from moms of older autism kids for no good reason. Go figure! Bottom line? It's harder to find those Yoda moms the more time goes by. 

 











I  am so happy I get to share all my tips and experiences with my new friend and the other moms I encounter. 

Yoda or not, truth is, I like to help. All of the experiences I went through make me who I am today. Maybe some things did not work for us, but it will for them. I am always careful to point out that what I share is just MY experience and not gospel. 

It's a club no one wants to be a part of, really, but once here we are all in it together.

KAI TODAY...still working hard

An autism Christmas...redefined

I could not wait for Kai to be three. That would be the year that I would get to spoil him for Christmas, and he would be able to join in on the fun. That would be the year that he would write Santa a letter and wait anxiously for his gifts. The year in question? 2005.

It's what typical parents do right? I did it too. I spent way too much money at Toys R Us, and once Kai went to sleep, we set up the entire living room with toys. I mean, the ENTIRE living room. There was a drum set, ride on toy, books, ball toys, instruments, electronic toys, DVD's, train set, etc. You get the picture. Never mind that he had just been diagnosed several months before, that he had a thousand and ten red flags, that he was not even close to being able to write a letter to Santa. I had this image in my head that just had to happen. I am really stubborn after all.

This is what happened.
 He walked out of his room ushered by daddy. He quietly took one look at the living room, walked right past it, and ran the opposite direction. He wanted nothing to do with the toys. NOTHING! Did not want to touch them, listen to them, look at them- NOTHING! The more we tried, the more frustrated he got, and the more his behavior would deteriorate. We kept the toys there for several days, and he still paid no attention to them. We put them away, and over the next year he slowly warmed up to them. He was beyond overwhelmed. He had/has autism. I just clearly did not understand it yet. I wanted to force a "typical" event parents celebrate with their kids as if I too, was living the same life. That could not be further from the truth. I had no idea that my life was about to spin so out of control in the months and years to come. This was just a tiny incident in a sea of heartbreaks that would come my way and I was devastated.

2005, what a year.

I cried so much over that failed Christmas and those "after diagnosis" years. Not only was there no Christmas but no celebrations at all. Photos with Santa? Forget it. Birthday celebrations? No way! That means there is singing and blowing out candles or, in his case, failure to blow them! Easter bunny? Ha! Fireworks? Never! Costumes? Not unless it's the loony bin one for me! You get the picture.

The following year I vowed to do as little as possible to celebrate. I now knew that Christmas (birthdays or any holiday at that) was just another day for him. I knew that trying to force it on him would backfire. All he wanted was his usual routine. That is what he expected, and anything new would throw him off for the rest of the day. Most kids with autism find safety in routine and changes are hard to handle. Of course, it's not like me to give up altogether. I just put it on the back burner and tried my best not to let it consume me. The hubby and I would do our Christmas routine as usual and would offer him his gifts. Kai would push them aside, and we would just shrug it off. The toys would stay there until he was ready for them. I would warn anyone offering him a gift not to expect excitement or anything that "typical" kids do towards gifts and especially not to take offense when he ignored the gift.

Several years later, around 2008, we had a small breakthrough. He started to look at the gifts out of the corner of his eye, run towards them, touch them and then run away. He started wondering what gift bags might have in them. In 2009, I came up with a strategy. I numbered all his gifts. I would ask him to bring me # 1, and I would open it for him. I would then repeat the same exercise for all gifts without once forcing him to open the toy or play with it. He did as asked and seemed to find comfort in that process. It prepared him, and he knew what to expect. In 2010, I labeled all his gifts with his name written really big where he could see it. I guided him to find the ones with his name, and again, he seemed to enjoy that. I sat with him, tore the corner of the gift for him initially and had him finish opening it. 
This year, well this year was amazing.

This year something changed. Shortly after his June birthday when he asked about "birthday gifts," he started asking for Christmas gifts. I explained that Christmas was in December, it was still July, and we would also need to have a Christmas tree first. He still didn't fully grasp the concept of days and a calendar. He was so excited when the day finally came to go purchase a tree. He now knew it was December and naturally, Christmas must be very near. The tree went up the day after Thanksgiving. He checked that tree several times a day to make sure he did not miss "the gifts." He asked, and asked, and asked, and asked until he was blue in the face.

Days before Christmas, I sat with him to write a letter to Santa. I had him address it to Santa Mommy. I don't know what his cognitive level will be years from now. I figured I can always have him drop the "Santa" part of the equation to avoid having a 17-year-old asking for Santa, if need be. I prompted the first several things on the list I knew he would like and then he rattled off a couple of things ON HIS OWN to add. I was floored. 

I really thought he was not going to make it until Christmas day. This boy, at nine, was making up for YEARS of not celebrating Christmas in this one year. We celebrated Christmas Eve with some friends and family. We encouraged the kids in attendance (and Kai) to open a couple of gifts before Santa's big delivery the next morning. He was so excited, but it was hard to explain that it was only a preview until the following day and not the real gifts. 

Christmas morning was just a dream. He dove to open all gifts. He played with them one at a time before going on to the next one and truly enjoyed this Christmas like I had wanted him to do that day when he was three in 2005.

I could not stop smiling. I still can't stop. It's not about the material side of asking for things on Christmas. To me, with him, it's about seeing him enjoy a day most children look forward to. A day that I, as a child, enjoyed so much. It's about us being able to finally have a day when we are the typical ones too and not the ones that once again do things differently. A chance to feel normal and relaxed where the only stress is how much you probably should not have spent on this or that. We yearn for that "typicalness." It's really tiring not to be that typical family 365 days a year, 24 hours a day. For once, we were somewhat normal, and it felt great! 

I will never forget Kai's smile and intense focus as he unwrapped each gift. I will always remember how he innocently ran to his room with several of his gifts under his arms, ready to play and he was not even halfway done opening them all yet. The excitement was palpable and contagious. My little boy deserved this day. So much of his childhood has been stolen from him and us, but at that moment, we had it all. I don't know what the future will bring, but my now is pretty darn good when compared to 2005!

I cautiously hope it keeps getting better.

Thank you for reading.
Have a wonderful holiday season and a joyous new year!

Zumba diaries

I love to work out. Yes, I know I used LOVE and WORK OUT in the same sentence. Sometimes I don't feel like it, but I have never regretted getting off my butt and doing it.

Last week I had a rough day. It was one of those days where everything just went wrong. It wasn't about what went wrong per se, but that so much went wrong at the same time on the same day. By the time 5pm came, I had to decide if I was going to change and go to my usual Zumba class. If you are not familiar with Zumba, I will explain it quickly. It is a high energy, fast moving, dance class where you move to all sorts of Latin rhythms or what I call happy music.

It's hard to muster up the energy to take that class when you feel nothing that resembles happy and even less when you are downright miserable.

Let me rewind a bit. Last month while at my Zumba class and while on a typical, happy day for me, I had a conversation with a friend from class. She was so excited. Her son (my age) had come to visit her. She gushed as to how happy it made her to spend such quality time with him and how proud she was of him and his new business. How he was dating this new fantastic girl, and they would probably be married soon.  I was really enjoying the story. I was reeeeeeeeeally feeling her excitement. I am very sensitive to what others are feeling and can often feel it when they are standing close to me (I know, weird....but I digress). This was during a dance break. When she turned around to start dancing again, I was still smiling just so very happy for her. Then it hit me. I am NEVER going to have that with Kai. Don't know yet if I will with Quinn either. At best, Kai will be 40 and maybe begin to be phasing off his Mickey Mouse stage and moving on to Star Wars or other more appropriate "boy" categories I am not yet familiar with. He will probably be living with me. Will probably never get married. I will probably never have grandchildren.

It's not that I have not thought of this before, but it's that it just all hit me at that moment. Everything that autism has and will steal from me was playing in my head like a bad movie. Music started playing, and I had to fight back the tears. To make matters worse, this was the song playing:





It is a BACHATA version of "Stand by me." I actually don't really enjoy bachata. It's my least favorite style from my classes, but it was the song that affected me. I followed my adorable peppy instructor, but I had tears down my face. Lame but I could not help what I was feeling. Of course, I will stand by my sons, but it did not make it any easier to digest. Luckily the song stopped playing, and we moved on to another song and thankfully a much much higher energy one. Phew! Thank God for Pitbull and my ability to recover from being sad so quickly. Phew.


That class behind me, here I was last week considering if to attend class on a day when I was feeling rock bottom. I changed, put on my sneakers and arrived at class. I had no energy, no smile and was already thinking this had been a bad bad mistake. Everyone was in such a good mood that day. Gym friends all said cheery hellos and class started. Somewhere between my half ass merengue and weak reggaeton routine I noticed a girl in the back of the class. She was wearing a scarf over her head. Wait, I knew her. This is a girl that is always in class but now she has no hair and instead of being in the front of the class, she was hiding out in the back of the class. OMG! What happened? Cancer? Something like it? I thought. My heart sank and in that instant everything was put into perspective. Yes, things were really bad that day for me. Yes, there are days when my life just sucks and the future seems bleak but at least I have "life". This girl was probably fighting something completely different than I was but she was also going through her own pain and yet, here she was. She might have been in the back but she was rocking Shakira and Willy Chirino while I was self pitying during the songs. Just like that, I got over it. She inspired me to see the big picture that day. She reminded me that not all is lost and although things still hurt, we gain more by being positive than by rotting in negativity. We all have pain and we all have hurdles. It's about acknowledging it, feeling it, then putting it to rest (until the next time) and moving on.

My husband's response to me always saying "things could be worse" is usually " yeah but they can be much better too". He's right but since we can't control some aspects of our lives we need to focus on what we can and that's our attitude. It's all how you look at it.

For now at least, I have regained perspective and I am ready to keep rocking my Zumba class with a smile on my face regardless of what is going on in my life and class that day. I leave you in the company of Cuban genius Celia Cruz and her 2nd famous words "RIE, LLORA, que a cada cual le toca su hora" (loose translation: LAUGH, CRY because each one of us has our time)
That class behind me, here I was last week considering if to attend class on a day when I was feeling rock bottom. I changed, put on my sneakers and arrived at class. I had no energy, no smile and was already thinking this had been a bad mistake. Everyone was in such a good mood that day. Gym friends all said cheery hellos and class started. Somewhere between my half-ass merengue and weak reggaeton routine, I noticed a girl in the back of the class. She was wearing a scarf over her head. Wait, I knew her. This is a girl that is always in class, but now she has no hair, and instead of being in the front of the class, she was hiding out in the back. OMG! What happened? Cancer? Something like it? I thought. My heart sank and in that instant everything was put into perspective. Yes, things were really bad that day for me. Yes, there are days when my life just sucks, and the future seems bleak, but at least I have "life." This girl was probably fighting something completely different than I was but she was also going through her own pain and yet, here she was. She might have been in the back, but she was rocking Shakira and Willy Chirino while I was self-pitying during the songs. Just like that, I got over it. She inspired me to see the big picture that day. She reminded me that not all is lost and although things still hurt, we gain more by being positive than by rotting in negativity. We all have pain, and we all have hurdles. It's about acknowledging it, feeling it, then putting it to rest (until the next time) and moving on.

My husband's response to me always saying "things could be worse" is usually "yeah but they can be much better too." He's right but since we can't control some aspects of our lives we need to focus on what we can, and that's our attitude. It's all how you look at it.


For now, at least, I have regained perspective, and I am ready to keep rocking my Zumba class with a smile on my face regardless of what is going on in my life and class that day. I leave you in the company of Cuban genius Celia Cruz and her second famous words "RIE, LLORA, que a cada cual le toca su hora" (loose translation: LAUGH, CRY because each one of us has our time)



Azucar!

An autism Halloween

I love October. It's one of those rare times in Florida that the air actually starts to change. The light breeze goes from 95 degrees to 80. Ok, it's not much, but I will take it. (a gentle reminder that South Floridians break out the parkas at the mere mention of the weather dropping to 75. True story)

Along with that breeze comes Halloween. Now while I love any excuse to shop and dress up, the reality is that for most kids with autism "love" is not a word they would use to go with the word "Halloween," (if they are even verbal that is).  Kai is nine but still does not get the full concept. I guess that he does perhaps know that once in a while mommy goes nuts and makes him wear weird clothing and nags over photographing him in it. I usually start mentioning it a week ahead of time. I show him his costume and even draw up a social story for him in the hope something clicks.

This year Kai (9) was Batman. Quinn (2) was Robin.  Kai has been a Hershey's Kiss, Superman, army soldier, clown, Incredibles, fireman, soccer player, and Peter Pan. Quinn is still too little to protest it. Most of those costumes listed have no hats or masks, and if even if they did, they were worn for a split second as I snapped a photo and were never to be seen again. He must think I am nuts. I mean, why can't he wear his tee and shorts like every day? Why can't he just be? What fun is it to wear weird itchy clothing? I guess I can see his point. My rule of thumb for holidays is this: as long as I get ONE photo, the rest can go awry, and I won't care. At least, I try to stick to that.

I got the one photo!

The other BIG issue? Candy. They do not eat candy and don't care for it. They have been on a gluten/casein/yeast/soy/peanut free diet for the longest time. Although some candy falls into those categories, we just don't give him any. It's annoying to me that our standards are so low for our kids' diets. By "our" I mean, society in general. Peek into any kids school on a holiday party, and you will find 3 puffed Cheetos, a cupcake, and a handful of chips on their plates accompanied by some juice. That's all they eat for lunch.  I wonder why they could not concentrate in class and were hyperactive? That's how they spend the day until they get home and "hopefully" eat a well-balanced meal. Insert eye roll here when I say "hopefully" because I would dare say, it mostly does not happen. Need to point out that this goes for all kids: autism or not. If it was only truly just on holidays, but it happens more often than not without the holiday excuse. Not saying that had Kai not had autism he would not eat that once in a while, but I would make sure it would be only following a nutritious lunch. Is that so hard to do? But I digress... 

As it turns out, this year Kai was successful in repeatedly donning his Batman for not one, not two but three  Halloween parties! That was huge. Did I mention the Batman costume has a mask? I even think it was the first time he understood that going to a "Halloween party" entailed "conditions" (costumes).  When his teacher sent a note home asking for "special" items to be sent to school on Halloween such as candy, pastries, chips, juice, etc. I sent a note back saying "no thanks," and that was the end of that dilemma. I still cannot comprehend how they want to feed sweets to a classroom of kids with autism whose behavior will most likely deteriorate immediately afterward. Kills me. 

Halloween night we briefly attempted to go to a friend's house. It was a little rowdy for our taste. Kai was all over the place. Quinn (who is not walking yet) was just crawling all over the place with his little hands picking up all the dirt from under people's shoes and then putting his hand in his mouth. Did I mention I am neurotic about limiting the baby's germ exposure? I swear I am pretty normal otherwise. Ha!

We hit a big wall when we attempted to trick or treat. Here is Kai, being prompted to trick or treat for something he does not understand (since he does not know or eat candy). Why do we even make him do it? So he can "fit in"? So that we have a sense of "normal"? After he attempted to enter a couple of strangers houses looking for what I can only guess is the location of their computer, I called it a night. Here were these poor people offering Kai candy and all he did was push through them and stretch his neck hoping to find a computer or something to play with. Oy! Never again. 

Next year I think we will have the boys dress at home and participate in giving the candy to the trick or treaters that come to our house instead. It's more fitting for our lifestyle. We don't do candy, but you do, and we want to celebrate with the world so here, take it all and enjoy! This way they will also get to interact without the confusion of asking for something they don't eat. Makes much more sense and I think I have finally made some peace with it. Bring on Halloween 2012.

And now time to tackle an autism Christmas. 

It never ends does it?

How was your Halloween?

From wine to whine...

The hubby and I took a much-needed break this last month and visited some Napa Valley wineries. Heaven. Wine has been our obsession recently. I think we have a found a way to deal with autism and developmental delays as a couple. No, not by drinking our sorrows (well, maybe a little). It is more of a shared hobby, an enjoyable one at that. We love learning all about the red wine. 

We secured babysitting and away we went. Four days full of wine-ing and dining. We slept in on occasion too! What a concept. We are strong believers (now) that we must carve out time as a couple and individuals so that we can be better parents. Tired parents are less patient and not as clear headed. On the last night, we took the red-eye flight from San Francisco. The flight left at midnight west coast time and arrived at 8am east coast time. My husband jumped right into work, and I jumped into therapies, diapers, and the OTHER type of WHINING. The days of the right kind of wine-ing were forgotten within 15 minutes of setting foot inside the house.

We dove into our usual Tuesday slavedom that is Quinn's new program. Four hours of a "mommy and me meets preschool" type of class where the moms follow the kids around and do exciting things like table tasks and sensory stations. Kill me now. As a second timer (did plenty of rounds with Kai, now 9) this time around with Quinn (28 months) is excruciating. I wish I was taking him to the zoo, the Seaquarium, the park or just on regular playdates. Instead, every morning is filled with a different therapy. The joy. Speech therapy back to back with physical therapy back to back with ABA therapy and on the other days? The preschool classes. I also have to listen to all the mothers, myself included, pronounce all the words with sing-song intonation, give cheerful compliments (for 4 hours) and listen to the kids that have had it and scream the entire time. I know it's part of the process. I know those moms would rather be elsewhere as well. Finding the energy to carry on as enthusiastic as the first-timers is hard though. It helps that I have days of wine-ing to look forward to.

We are still six months away from his Quinn's 3rd birthday.  Most importantly, we are still under the glaring possibility of an autism diagnosis which will make this the 2nd round for us. Not saying that will happen but we are still under that "window." Until that window closes and we have a green light of no autism, my stress level will be considerably high. We are working hard towards escaping that autism diagnosis. We are doing everything in our power, but there are days, like today, that I feel like it's not enough. This is where my whining comes in. Who am I kidding, I was talking about me the entire time I mentioned whining, not the kids.

I am whining about it yes. Things could be worse, but they can also be so much better. I can fill in the blank with a lot of "at leasts" Yes, at least I have this and that yadda yadda. The thing is, nothing matters unless you and your family have health. Plain and simple. Health is the single most important factor in our lives. With health, you can do anything. Who cares if we can go to Napa if we would trade it in a heartbeat for our children to have a typical childhood. Shoot, they don't even have to be really smart. Just average. We will take it.  Even C students! Detention? Great!

Until then, I am grateful we do our getaways and adult nights. Without them we would only be enveloped in a sea of depression, surrounded by pecs schedules, evaluation appointments, doctor's visits, and well-meaning ABC singing mothers at therapy sessions.

It's Monday, but I am already counting down to the weekend when we can relax and have more whine over wine time. It's what keeps us going.

Cheers!

The Happy Camper

Spring! Well, it's not spring anymore, but we live in South Florida, and it's always HOT! (translation for: I started writing this months ago but just finished it now)

What better way to celebrate than to enroll our Nemo into swimming lessons?

That's what we did several months ago. These were not your typical ones either. These were for kids on the spectrum who already knew how to swim. They were to be taught the proper techniques for strokes so that they could swim laps: forwards and back.

I enrolled Kai and spoke to the camp director. I was excited and made sure Kai knew exactly where we were going and why. He seemed excited as well. Not sure he got what was to be taught but if it involved water, he was game.

The class was supposed to begin at 3:15. Naturally, arriving at 3:00pm was not a good idea. He was very anxious, and the waiting was hard on him. At 3:10pm they decided to begin since the kids were stimming by the minute. There were about 10 kids and 5 instructors.

And so the problems began right away. One of the lifeguards in the water, we will call her Maggy, was instructed to stay with Kai until it was "his turn." The instructors then took turns with the kids doing their thing. There was a little girl we will call Lilly. "Lilly, what a great job you are doing!" said the head instructor. She had been in the water 2 minutes and was showing off her gloriously learned strokes already. "Way to go Lilly" called out another instructor from afar. Gee, I sure hope my Kai learns all of that at camp. So awesome!

Kai was not being taught so he would go to the edge of the pool and jump in. In his world, this was awesome! Woohoo! He gets to splash and play, what's not to like? Well, if you ask the screaming camp director, lots. "Kai, no jumping in!" "I said, NO jumping!". What is happening here? I thought. No one told him not to jump in initially and screaming across the pool will not register with him. Have these people taught autism kids before? How about going up to him, looking him in the eye and telling him firmly what the rules are. "Lilly, that was awesome!" screamed another instructor. Then there was Nico. Nico had been having a "turn" and then asked to sit nicely while the other kids, not Kai, but the other kids had a turn. "Wow, Nico, you are doing such a great job, let's go back in again." Meanwhile, Maggy now had a soft hold on Kai so that he would not run off and jump in the pool. 3:23 rolled by, 23 minutes later, and Kai was STILL being held in the corner by Maggy and not one person had come to get him to "teach" him. He was actually being quite patient considering he was in the same spot with one person in the water doing absolutely nothing. This was just the first class.

Walked up to the main lifeguard, Lola, as she screamed at Kai who had managed to break free and was happily running into the pool via their beach entry. "No running!". Kai's "running" was more of feet flat, shuffling into the water than it was "running."

"Listen," I said, "if you need him not to run or jump in you are going to have to pull him aside in the water and explain it to him. It might take several times before he gets it. Screaming at him from far away will not do a single thing. He has no idea it's directed at him. Also, he has not been active since class started". "Great job Lilly!" called out yet another instructor from far away.  Also, Lilly, Nico and most of the other kids have gone out several times, and no one has come to get Kai yet. "The reason he is off and doing his own thing is because there is nothing else for him to do! If someone was working with him he would not have been able to run off."  "Ok" she replied."I will tell them something". Lola walked up to the head instructor and with her back to me repeats what I said. The instructor gets a look of "Oh no she didn't" and says to her "Well, that's not how it works around here." Repeat to thyself, patience, patience, patience.

Was this really happening? This is how it was mostly for 6 weeks. There were maybe 2 classes when he got a fair shot at swimming and instruction just like the other kids. That's it. Since this was a trial for me anyway and I had already paid (I thought it was non-refundable), I took it as a free play activity for my son, and I figured I was going to just attend and let it go. There were other incidences. The one that always upset me the most was just how much time alone he spent or getting screamed at for doing his own thing when not being "taught." I don't think it's rocket science. You either have the child with you to teach, or you don't. When they had him, he did great, and I have that on video. When they did not, he played on the beach entry or wanted to jump in (as he does at home and all the other schools and field trips he has attended). I also have that on video. He already knew  how to swim, and this class was supposed to define those skills, but it never did.

At one point the camp was short staffed, and the director was on her cell phone on the lifeguard stand. My son was all alone by the entrance. It was a joke. In another instance, the director's grandson was in the water with our kids, and he was having "turns" too which took away from our kids. The day of the last class I discussed some of these concerns with another parent who agreed with some of it and had been oblivious to others. "Lilly's" mother overheard and "tattletaled" 4th-grade style to the director. I sat there in disbelief of what was going on. Now I could be wrong, but I saw her casually backup into my conversation with the other parent to get within earshot and then watched her hightail it to the director who was not happy. I don't care that she overheard because it's something I had already mentioned to them as a concern and something I would (and did) say to their face. "I tell you, that woman, from the first day..." is the most I lip read. Any chance this was not about me? Maybe. Or maybe not.

I have been a dance instructor all of my life. I have taught small, typical kids. I know all about being fair and making sure each child is paid attention to and taught. This was NOT the way things were done at this camp amongst other issues. I also know that there are days when you or your staff can be off, but if it's the majority of the time, then there is a problem.

When the six weeks were up, my son had learned NOTHING. I left and quietly decided to just let it go as another one of those "live and learn" autism experiences where a therapist or school is not as qualified to teach our kids.  That was until a parent asked about this company on a Yahoo group to which I belong. I did not hesitate to write about my story to this parent and the other group members. I made sure to say that perhaps if you paid for a one to one their experience could be different. I did praise the instructor that worked with him for those precious 5-10 minutes of instruction in the 45-minute class span. This is a parent group where parents share their experiences with autism-related things such as therapies, therapy centers, teachers, therapists, community events, shadows, etc..Another parent who attended the same camp forwarded the info to the camp owner. I wonder who? Hmmmmm.

The thing is, I had been upset all summer, and I tried to keep a lid on it in an attempt to just deal with it patiently and give them more time to get it right or just finish the camp. But, now someone wanted an opinion. I have a right to give my opinion of a business. I was not a happy "camper." Pun fully intended. That is why there are places like Yelp!, Google search and Trip Advisor. People are free to express how their experiences were with any business.

The owner wrote me what I guess she thought was an intimidating later or a cease and decease type of thing. Ha! Really? Sorry, you weren't happy so now shut up about it? Not in a million years. I am not going to go out of my way to tell the world my experience, but if someone asks, I will. Did I mention my husband is an attorney? I know I was doing nothing wrong by sharing my experience. My son is 9. Can you imagine how much therapy and classes he has taken over the years? Not all has been perfect every time. With that said, need I state that every single teacher or therapist has always loved him to death for being such a great little boy AND student? This was the first time he had been ignored or scolded so much for no good reason. She was so blindly upset that a lot of points in her letter had nothing to do with what I wrote. I wish she would have just said something along the lines of "I apologize for your experience. I don't remember things happening that way. I wish we could have talked about this some more so that I could have made your experience at our camp a pleasurable one." THAT would have been an excellent way of telling me off! (since she is also entitled to her opinion...lol). I thought long and hard how to respond or if to just let it be. I responded briefly and just went over a couple of the points and how I disagreed. I kept it short and to the point. I knew it would probably fall on deaf ears (or eyes), but I just had to reply. Such a sad situation for all involved.

I don't like anything about autism. There are some things though that in cases like these are a blessing. The only happy camper in this situation was my son. He had/has no idea that the camp was supposed to be different. If I took him to that pool today, he would be ecstatic and be anxious to do the same thing all over again. For that, I am so happy. At the end of the day, HE is all that matters.

In an interesting turn of events, I enrolled Kai in an amazing summer camp weeks after that incident. This was a camp full of activities and one of the perks? He got to swim each day with the counselors. By the end of camp, my son was swimming correctly, forwards, backward and even underwater. To that I say BOOYAH! See what happens when you " teach"? Amazing isn't it? What a concept.