Oh, World Autism Awareness Day how I loathe thee...

Don't get me wrong, I want a lot of attention on autism. I want people to understand and I want someone to help find ways to cure and prevent autism. The problem is that "awareness" is mostly misrepresented in the media. I like to think most of it means well. The media finds all sorts of "feel good" stories to air and calls it a day by April 3rd. The "feel good" stories are often really out of touch with what is truly happening to our kids.

You don't learn about how often our kids are bullied, hurt or killed. You don't learn about how a lot of our kids are "runners". No, not track and field. They run away to anything that might call their attention: A body of water, music, a tree...anything and then get in trouble and a lot of times, die. You don't hear about us parents worried about their future. And by future I don't mean their graduation, where they will go to college or who they will marry. I mean what will happen to them in this world when us parents are gone and no one is left to care for them. (The majority won't marry, won't graduate with a regular diploma and won't attend a regular university). A good number of the kids happen to be severely affected. They don't speak. They wear diapers. They watch Barney. Even at age 17. 

No, you will NOT hear about that today. Today you will hear about all of the things that "don't" cause autism. Today you will hear Clarissa play the violin. Spencer will wow you with his amazing ability to recall every book he has ever read. And Mary, oh Mary, how can we forget her? she use to have autism and now it disappeared (but they won't tell you what therapies or treatments she used- too controversial). My favorite is when they interview "autistic" adults. Usually ones with Aspergers or very high on the spectrum.. The ones that say there is no need for a cure. Wow. I would love to take them to visit a few of the kids that I know and then let them tell me it's OK to live this way. These success cases do exist, however, these cases are not the majority. By far.

Forgive me for being a little cynical and rain on the "blue" parade. I am a very positive person. Really, I am. Thing is, I am also a realist and see things black and white. We don't live in a bubble. We live in a very cruel world. You can think, act and be all puppies and rainbows and someone out there will still not understand autism. Sometimes, that can have lethal consequences as posted in the news way too many times this last year. I want to feel/see a sense of urgency by all of the professionals they interview on TV when the world is watching. I want to see our government acknowIedge our panic and put a real plan in action. I want the world to be "aware" that 1 in 50 kids are affected by autism and this is NOT OK. I "celebrate" Kai but I sure as hell don't want to "celebrate" a condition that stole his chance at a normal life. Every time I read the word "celebrate" along with "autism" I want to scream.

I have been dealing with "autism" for the last 10 years. It sucks. Here's a look back at our family's story: A FAQ section of sorts. These are the questions I have been asked the most this last DECADE and might perhaps give you an insight to things we have dealt with all this time.

When did Kai first get diagnosed?
At age 3. I took him to get diagnosed at 15 months but they refused by saying he was too young.

When did you realize there was something wrong?
At about 13 months I noticed he had stopped babbling, eye contact and making sounds. He was (and is) a happy child so it was hard to believe this beautiful boy with the twinkling eyes and constant smile had anything "wrong" with him.Family said he was just being a boy. Boys talk late they said.

How did you deal with the diagnosis?
I haven't stopped "dealing" with it. It's the same as the five stages of mourning or loss:
(Denial, anger, bargaining, depression and acceptance.)
Not my son, I said. I am going to do anything and everything I can (I sure did and continue to) and he will be OK (he's always better but far from OK) . By the time he starts school, he will be mainstreamed with regular children. (still waiting for that one). Anger still comes and goes. I was very very very angry and depressed for a while there right after diagnosis. If you want proof just read the first couple of entries on this very blog. Spitting fire I tell you! Angry at the world and anything that came my way. Now I am just angry at the morons leading the way in fundraising and research. (Yes, really. C'mon, they are practically begging to be laughed at. Millions of dollars and over a decade in research and you are still recycling old studies and publishing duplicate ones? Their call to fame is getting ipads for kids on the spectrum? After all this time? Give me a fucking break! But I digress....) Bargaining for me is ongoing. Always trying a new approach. Acceptance, well, a part of me finally accepts that Kai has and will always have autism but I still refuse to stop trying to help him be the best that he can be. 

What "treatments" have you tried?
Speech Therapy, Occupational Therapy, ABA (Applied Behavior Analysis), Music Therapy, Hippotherapy (no hippos involved- it's with horses), RDI (Relationship Development Intervention), Sensory Integration Therapy, Stem Cell Replacement, Gluten Free/Soy Free/Casein Free/Dairy Free/Dye Free/Peanut Free mostly organic diet, Distilled water, Chelation, Hyperbaric Oxygen Therapy, various nutritional supplements (glutathione, probiotics, vitamin D, and vitamin B12 injections to name a few of over 40 we have tried), antifungals, using all natural household products, salt water for the pool, nothing with "fragrance", no perfumes, no candles at home, endless  blood, urine and stool tests, an MRI, all that and a bag of chips. 

Which ones worked the best?
It's hard to say when you are doing everything at once and back to back. For starters, I would say you can't beat a good diet (not necessarily a GFSFCF one but just a wholesome one without artificial coloring or flavoring and mostly organic to avoid excess hormones and pesticides). ABA would be my therapy of choice. Vitamin B12, probiotics and glutathione (most kids on the spectrum are low on this) are the most important ones for Kai. 

Where is Kai on the spectrum?
He's kind of in limbo. He's not a severe case and he's not high functioning enough to be mainstreamed or have a conversation with me. He can speak but uses limited speech to request things he likes or wants. "Mommy lunch time"" I want ipad please". Asking him how his day went gets no response. Besides requests, there is ZERO spontaneous language. He "stims" and "scripts" all day long. I would describe a stim as a hard to control repetitive behavior. You know when us adults sometimes pace back and forth when on the phone? That's a stim. In Kai's case, he might hum softly or squint his eyes in front of his hand. He might look at a wall out of the corner of his eye with his face next to it. A new one is pressing his chin really hard into the top of his hand. That's a fun one. Scripting is when he repeats lines from a movie, song or game over and over and out of context. "I give up" " Let's do this again""Everything tastes better when you're camping out!" The only positive to this one is that sometimes he uses those "lines" to attempt to express himself. If his computer is not working he will come get me and say "that's not it, try again". It's a line from a computer game but, hey, I'll take it! He was fully potty trained by age 6 and still can't properly brush his teeth. Haircuts are a nightmare and we now have someone that has managed to come to the house and get it done monthly. He can read and write pretty well (at about a grade or two below where he should be) but he has zero reading comprehension. He cannot answer a single thing about what he just read but he can sing songs in their entirety and remember dance steps (takes after mommy after all). He no longer has floor tantrums, but he use to. He will go into long crying fits and has learned to self soothe by deep breathing or walking away from the situation.

What is the hardest part about autism?
Knowing that he can't tell me if someone is hurting him. I am always anxious to know what he did in school and I only know a tiny bit because of the teacher's notes. I worry knowing that he doesn't know malice. He's as innocent as a baby. You can be in front of him, call him all sorts of names, push him around and he will either ignore it, think it's funny and not know where it could lead. Thinking that most likely I will never see him get married or hold my grandchild, that's a tough one too. I can't sleep at night thinking that he will end up alone, drugged and in some institution once I have died. Who will watch after him? How can I prevent something bad from happening to him? How do I live and enjoy "now" if I know this probably does not have a happy ending? I try all I can to look past it but it's easy to be on a constant emotional roller coaster about it all day, every day.

What do you think caused his autism? Do you think he was born with it?
I believe he was born perfect and healthy. I strongly believe genetic predisposition with environmental insult is the culprit. I have discussed it often on this blog. We live in a very toxic environment. Pesticides and hormones in our food, overuse of antibiotics, drugs, and vaccines (the most serious insult because it's delivered directly into our bodies) can surely trigger regression in children.

Why don't you support Autism Speaks, wear blue or light it up blue?
Too long to type again but feel free to read this blog post I wrote about it! CLICK HERE 

What organizations do you support?
I support any local ASA branch, Puzzle Peace Now, Surfers for Autism,  D Amor Foundation, NAA and TACA. 

What advice do you give new parents to be or parents of newly diagnosed children?
Find a doctor that will work with you in all aspects of your child's health care and not one that will make you feel inferior for daring to question his/her opinion. Space out or stop vaccinating if possible. Look into every single thing that touches or goes into your child's body. It's not just food. That's an obvious one. Also look into lotions, clothing, fragrances, cleaning agents and pesticides. A little bit of this and a little bit of that does not harm us they say. The problem with that is that every little thing adds up to a whole lot of environmental insult to their bodies! Decide what works for your family and stay firm about it despite "mainstream" beliefs.

If you got this far, THANKS!

I ask (beg) that on this Autism Awareness Day you:

Learn the signs of autism .

If you are going to support an organization, find out how your funds will be used first. Donating and supporting on a local level is always best! 

Teach your typical children about tolerance and patience. Practice this as an adult as well towards other parents. Not every child that is seemingly "acting out" is a brat. Staring will not help. Either offer help or let that parent "just be" without judging.

Ask questions. If you have met one child with autism, you have met one child with autism. Everyone's journey is different and you will gain a broader perspective by simply asking about it. 

Let's make this month go from AWARENESS to Autism ACTION month and pay it forward. Enough is enough.  

      

Preventing Autism 103: CHRNA7 and more questions

 "Your son is positive for a CHRNA7 duplication" the geneticist said.

Blank stare.

" He has a duplication"

Blank stare.

"OK" I finally mumbled. " What does that mean exactly?".

He didn't know. Of course he didn't know. No one seems to know shit nowadays. "Well, children with a duplication often have hypotonia, developmental delay and one day in the future- say 15 to 20 years down the line- he might develop psychiatric problems such as depression, schizophrenia or ADHD. There is nothing you can do that you are not already doing. Keep him in therapy and we will just have to wait and see".

Blank stare.

"Do you have any questions I can answer?" he said. He hands me a google search printout with some of the same crap he just said. "Is there a study he can join? are you sure there is nothing else I can do?". "No" he said " This is extremely rare and there is not enough data out there now. In the future they might even just call it "CHRNA7 Duplication Disorder" but for now we don't have any more information".

Lovely.  And so my month of May began. Not a tear was shed while there. I remained stone faced and incredulous to anything this man was saying to me. I got in my car and drove home. It was a long drive. The last three years of my life replayed in my head. The last 10 years of my replayed in my head. They have been mostly full of tears, fears, diagnosis, research, doctors, diets , supplements, battles, more tears, and more of the same with Quinn's brother Kai.. 

I was numb. I got home and there were some flowers on the table from my best friend with a beautiful support card. She knew I was coming home after an appointment that might turn out to be difficult. I stood there and looked at those beautiful sunflowers and I started to sob. Frantically. Finally.

Three years with Quinn in diagnosis limbo in addition to the seven I have already spent in Autism hell with Kai. Neurologists and developmental pediatricians saying "this is not autism mom, relax". He's very social, he listens, he points, he seems to understand and he is affectionate. This new information was finally a clue. A real clue. One with no answers but a step in the right direction. The test that discovered Quinn's duplication was one that was done at birth. Technology was now better three years later so it caught it. This is what we now know. Quinn has: hypotonia, developmental delay, MTHFR mutation (described in an older post) and CHRNA7 duplication. All of that adds up to just one big ole question mark because no one knows what it means exactly. Sigh. Could it be that this is a marker for autism? The genetic predisposition we all speak of? Maybe Quinn was headed towards developing autism and because of all of the interventions we put in place since birth (diet, supplements, minimal environmental insults and a green initiative at home) it stopped short of it?  (at least for now?)

All I know is that I am waiting to exhale. This last piece of information leaves more questions than answers. An uncertain future yet again. Kai & Quinn have each other but what happens when we are not here? We don't have any family that can/would take over. That is the hardest pill to swallow. It's the one that keeps me holding my breath on a daily basis waiting to see what happens next. The one that makes me want to just cry all day, every day. But of course, I am not allowed to do that because then I am of no use to my boys. I choose to try to be happy despite it all. I choose to exhale a little bit. I smile and pretend I am OK which sometimes works. I choose to take time away here and there with friends to clear my head from our daily struggles and then jump right back into the race. It's really just going through the motions, putting on a temporary band aid ,only to rip it off and do it all over again. It does help that his smile just melts my heart. No matter what, he smiles.

 All Quinn knows is that he wakes up, happy as can be, and goes to meet his "friends". These friends are all therapists he sees on a daily basis and not little kids like him. He is in a preschool enrichment program 3x a week for a total of 9 hours. He does 1 1/2 hours of physical therapy a week, 4 hours of ABA (verbal behavior), and a 1/2 hour of occupational therapy. That's 15 hours of work that he puts in. Hard work at that. He's three years old. He just started walking and he's the most determined little boy I have ever met.  I want so badly to give him a typical childhood void of those 15 hours of "work". He has no clue this is not how his life is supposed to be.

I am in a race running in a constant loop. I am out of breath and I still can't see the finish line. I have no choice than to keep running.The craziest part is that this is all far from over. As of now, there really is no new information out there. I have started to contact a specialist from another state that focuses on duplications and deletions. I have also started a parent group in the hopes of bringing together parents that might be in the same limbo as me. One day at a time right?

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, vaccines, 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. 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 amount 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 (thanks to Age of Autism for the listing):  

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. In case you were wondering about AS's funds, here's a little teaser as to where it's mostly spent. It's a little old and some of those figures (probably higher now) and names have changed but you get the idea:

AUTISM :GOLD RUSH

It is absurd that the only thing Autism Speaks can latch on to is "awareness". It's one of the very few things they are successful with. 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 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. Lets show the amount 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 (as suggested by Anne Dachel of Age of Autism). I will be mourning the precious lives of the children who passed away due to wandering or vaccine injury. I will be mourning the precious babies that regressed into autism but that were born perfectly normal (like my own 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. Vaccine patent holders and pharma executives have NO business being on their board. I want AS to put funding towards vaccine safety research, 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 will caution parents about too many vaccines too soon, about nutrition, therapies, doctors and 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 it's roots and original goals. An organization that was founded by the Wright's for their grandchild. You know, the one who gets the same biomedical treatment they shy away from talking about.  Until then friends, speak up for yourselves and don't let Autism Speaks speak for you!

This post was inspired by Anne Dachel's post at Age of Autism. 
Read it here

The Sisterhood of Autism Yoda Moms

A friend I recently met has taken to calling 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! ha!). She's more or less the age I was when Kai was diagnosed. She has spunk, energy and a contagious laugh. She's a sponge. Unlike other moms I have met through the years, she takes everything I suggest or mention and almost instantly, analyzes it and applies it. She's hungry for knowledge and action. She asks a million questions. Nothing is coming between her child and his road to recovery. She says I should write a book because all the information I give her is worth a fortune. I am not sure about all of that but hey, at least I have a blog! As a disclaimer I will say that I am not some crazy mom preaching in every corner. I am just a mom who has gone through a lot of hell in 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. Without seeking it, I have noticed that autism moms, ALL autism moms have an undeclared sisterhood. There are those that have paved the way for me and all the new moms unfortunately starting out. This is not even limited to moms with kids on the spectrum! 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 their opinion on the topic. (if only mainstream medicine and organizations with $$$$ to fund significant studies would reach out as well we might be on to something now in this autism maze...but I digress)

I met her while participating in a mom's group where Quinn attends an extensive mommy & me program. I find myself sharing and reminiscing a lot with her and the moms there. It's so easy to. 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 9 and Quinn is only 2 (and the age of all the kids at the mommy and me), 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 had 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 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, the teachers who successfully went out of their ways to reach him, Jenny McCarthy coming out in Oprah-"opening the can of worms" and going through it in a parallel life far far away - and making autism a household name (love or hate her-she did)and many many other examples. 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 though, 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 to lose a 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 and where to go. 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 so it's easy for me to have my very own go-to, on demand yoda. But even  being on 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 those 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 3. To me, that would be the year that I would get to spoil him on 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. 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 a ten red flags, that he was not even close to being able to write a letter to Santa....oh no. I had this image in my head that just had to happen. I am really stubborn after all.

What happened was this; he walked out of his room ushered by daddy. He quietly took one look at the living room, walked right past it and into his playroom. 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 NOTHING. 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 and 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. 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? ya crazy? 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 because now I knew that Christmas (birthday 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 that and changes are hard to handle. Of course, it's not like me to give up completely. I just put it on the backburner and tried my best to not let it consume me. The hubby and I would do our Christmas routine and would offer him his gifts. He 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 to it.

Several years later ,around 2008, we had a tiny 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 would be curious of what gift bags might have in them. In 2009, 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. In 2010 I labeled all his gifts with his name written really big where he could see it. I sat with him and would tear the gift for him initially and had him finish opening it. This year, well this year was amazing.

This year brought on something in the likes of a light switch. Something just turned on. Shortly after his birthday when he asked about "birthday gifts" he started asking for Christmas gifts. I explained that Christmas was in December, we were only in July and we would also need to have a Christmas tree first. The day we got the tree he was just beyond excited. He now knew we were in 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 so if need be, I can always have him drop the "Santa" part of the equation to avoid having a 17 year old asking for Santa because it's what I taught him.) 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 is making up for years of not celebrating Christmas in one year. The night before we celebrated with a Noche Buena dinner. We had the kids in attendance and Kai open a couple of gifts before Santa's big delivery the next morning. He was so excited. It was hard to explain that it was only a preview until the next morning but he obliged.

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. He really truly enjoyed this Christmas like I had wanted him to do that day when he he was 3 in 2005.

I could not stop smiling. I still can't stop smiling. I want to make it clear that 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 that typical 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 and all the effort that comes with that. A chance to feel normal and relaxed where the only stress is how much you probably should not have spend on this or that. What most people see as typical or normal, is what we yearn for. It's really tiring to not be that typical family 365 days a year, 24 hours a day. For once, we were kinda normal and it felt great!

I will never forget Kai's smile and intense focus as he unwrapped each gift. I will never forget how he ran with several of his gifts under his arms ready to play when he was not even half way done opening all the gifts 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 in 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. Some times 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 down right 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)



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. (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 though, 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 9 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 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 itchy weird 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. He does not eat candy. Does not care for it. He has been on a gluten/casein/yeast/soy/peanut free diet since he turned 3. 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 or 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... (I predict a new gfcf diet blog post coming soon)

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 afterwards. 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 guess I should do another blog post on that too. 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 of 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?