Our Autism Journey Continued...

It has been seven and a half years since I last wrote on this blog, but this autism journey has not stopped for a single second.

Looking back, I guess I was ahead of the trend by starting an autism blog. It wasn't blogging, it was therapy. It seems like such a popular thing to do nowadays. I decided to reach out to you, my first ever blog subscribers, and update you on our latest news.

My son Kai (Dylan) is now in 12th grade. I'm not sure how that happened, given I started this blog when he entered Kindergarten. Gasp! His little brother Quinn (Oliver) is now eleven.

Last year, my best friend and I created a podcast about our lives as moms of teens on the autism spectrum: Disorderly Blondes Autism Podcast. We candidly discuss our journey's ups and downs and fill in the blanks that I have missed posting. We also bring in local autism businesses and sources to connect with you, the parents. On our website, we feature blog posts as well, from time to time.

I would love for you to come by and check it out. Here is the scoop!

Website: www.disorderlyblondes.com

Podcast Episodes iTunes

Podcast Episodes on Anchor and other major platforms

Instagram

Facebook

Twitter

Etsy

Pinterest

Thank you for reading and for supporting our journey, then and now.

Brenda

Back to the Future

Clifford Exhibit in 2005, Kai, age 3. 

For months, Kai asked for "Clifford Emily Elizabeth Miami Children's Museum." Yes, one long drawn out sentence. He is 11 now and is referring to a Clifford the Big Red Dog exhibit he visited when he was 3. Yes, 3. We have photos of that visit in an album. He has been looking through that album for years. Now that he knows how to somewhat Google things that interest him, he started finding online images of that exhibit. Naturally, I knew an exhibit from 2005 would not still be around now. Except, I was wrong. After redirecting his request for weeks, I researched it myself. Well, waddayaknow! The exhibit was alive and well at the Orlando Science Center. Yes, it's a three-hour drive from home. It's not the end of the world. I paused to think about this a little longer. It is one thing to take a 3-year-old to see a Clifford exhibit and another to take an 11-year-old. I knew what I could be in for. There would probably be lots of new moms, pushing strollers, and staring at my child in horror when he does something "quirky." He would surely seem out of place. Then again, I would be with him and would make sure he did not get into any trouble. Besides, it would make him so happy! I decided to go for it and got to planning our visit right away. 

Don't judge.
I drew it really fast.

Explaining to Kai that visiting Clifford would be a three-hour drive would be challenging. I took a piece of paper and quickly drew up a (bad) version of a Florida map. When asked, Kai can usually answer and say he lives in Florida. The problem for him is taking that concept literally. He doesn't comprehend that Florida is a location and that every place you travel to has a name. I wanted to try and explain it to him anyway. I drew a Mickey Mouse shape to show him who else "lives" in Orlando, Florida. I pointed to South Florida and acted out "driving" up to Orlando for him. He just stared at me. I know "Tarzan" speak is frowned upon by therapists. However, he seems to understand me better when I use fewer words and stick to the point. My explanation sounded something like this: "Monday, Clifford, Driving, Car, (insert engine noise and silly face here- brooom brooom brooom). Clifford lives next to Mickey! Three hours Kai!" He looked at the map, then at me, and then back at the map. Did he get it? I wondered. "Clifford Emily Elizabeth Miami Children's Museum?" he asked. "Yes," I answered, "Monday." He asked at least 25 times a day, for the rest of the week, just to confirm my answer was still the same. I know this was a little crazy. Who in their right mind drives to and from Orlando in one day? Apparently, I would be doing just that. Even though he can request things much better now than before (books, DVDs, games, etc.), there is still a lot we don't know about him and that he can't tell us. When he manages to ask for something out of the ordinary, I love to please him. I like to reinforce his requests in the hopes that he feels encouraged to use more language and interact further. Besides, how can I resist his smile and inquisitive eyes? 

He seemed a little nervous the night before the road trip. He kept asking about Clifford, over and over again. When Monday morning came, he finished his morning routine and was unusually quiet. We got in the car and started our journey. Now, usually, he would ask about Clifford again, every minute, while in the car. Not only did he not ask about it for an hour and a half, but he was also not stimming or scripting during the drive. In case you don't know, stimming is a repetitive, self-stimulating behavior (usually with a body movement). Scripting is basically the same, but instead of physical, it's a verbal stim. Kai will repeat movie lines or phrases nonstop. As I drove, he just sat there calmly and quietly. When I saw the "Welcome to Orlando" sign, I pointed it out to him. That was his cue to ask (the one and only time): "Clifford Emily Elizabeth Miami Children's Museum?", "Yes, we are going to see Clifford but at the Orlando Science Center. Are you excited?" I said. "Yes!" he replied with bright, sparkling, eager eyes. "OK baby, almost there." I smiled knowing that I had made the right decision for him. 

Kai, today, age 11.

We parked and walked to the ticket counter. Of course, the second we walked in, he took off running inside the museum. Those are the times when I miss the stroller days. It was so much easier to control his running away with the stroller. I jetted off after him and redirected him back to the ticket line. The staring began much sooner than I planned it. We purchased the tickets and went straight to the 2nd floor Clifford Exhibit. Finally! He had a grin from ear to ear! He didn't know which way to go first. He ran from one area to the other and then to a new one. My suspicions were right. He loved this! The exhibit looked dated, and some of the features were not even working. It didn't matter though, Kai was so happy! I was also delighted to see that the area was large and open. I wore sneakers and had a backpack. With free hands, I was now ready for anything! For the next three hours, I became his shadow. This is important given how many

kids, under 4, were there. Kai still has a hard time waiting for his turn and asking to share. This is common with kids on the spectrum. It's not because they are brats and not disciplined. They just process things differently. Kai sees things in black and white. If he sees something he wants, he goes to get it. The toy is there, and so is he: what can possibly be the problem? We have had to work hard teaching him to wait and reprogramming his thought process. It still takes a lot of prompting and reminders for him to focus. He is 11 years old. Cognitively, he is perhaps similar to a 4-year-old. He loved the huge movie screen towards the back of the exhibit. Depending on which button he pressed (red, green or yellow), an animated song played. Kai only wanted to touch the yellow button. Throughout the three hours we spent there, I yielded countless kids that wanted a turn at pressing a button too. This is where all that redirecting and prompting came into play the most. I had to keep reminding him to take turns so that other kids had a chance at the buttons as well. As expected, the staring by other parents was present all day long. They stared at Kai mostly when he was happily dancing away to the music. Much like Clifford, he was towering over all the toddlers there. I am happy to say, I tuned other parents out. I would have been rattled by it years ago, but not on this day. Instead, I focused all my energy on Kai and followed his big smile. 

Notice the big screen towards the back of the room?

I made him take a lunch break when I noticed he was becoming repetitive and obsessed with a particular area of the exhibit. This usually means he is overwhelmed and the stimming significantly increases. I had packed his lunch and figured I would buy something for me there. I stood in the Subway line for about 15 seconds. Visions of a half started sandwich by the Subway employee, and me running off to find Kai in the middle of it, took over. I left the line and blew it off. Who needs food anyway? Kai was antsy to get going. He wanted to get back to the exhibits. Had I stayed in line, this could have escalated to that scene I envisioned. He doesn't care to eat much. He never has. He eats because he is obedient. Subsequently, he shoveled his sandwich down his throat, as fast as he could. I remained hungry. After running around all morning though, I enjoyed the stillness of just sitting there. Food or no food. 

With my happy monkey!

Once we completed lunch, we walked back up to the Clifford exhibit. I managed to get him out and explore the rest of the center a little bit too. When it started getting late, I began our countdown.This lets him know it was almost time to go. He responds very well to this technique. "OK Kai, 15 more minutes." I could read the panic on his face, as he studied the area and decided where to spend his precious last minutes. By the time the 2-minute mark neared, he had requested to go "home" on his own. This is his way to have control and closure on the situation. We both walked out towards the parking lot feeling content. He couldn't tell me, of course, but I could see it in his face. Being able to do this for him made me happy. We are lucky to live close enough to Orlando. The three-hour drive, three-hour museum visit, and three-hour drive back were all worth it. He returned to a subdued state on the trip home. Surely, he was replaying it all in his head. 

The drive home went by pretty quickly. I kept stealing glances at my monkey in the rearview mirror. He is so big now and so different than the last time he saw this exhibit. Back in 2005, we were just getting started on this autism journey. I didn't know much and didn't understand what I would be in for. The future was just a fog. We still have a long journey ahead of us, and that fog is still there, but it seems to be lifting, pieces at a time. He has come a long way since then. I can only imagine just how far he will go in another 8 years. Overall, I enjoyed this visit with Clifford then and now. Kai is growing up way too fast and these moments with each other are truly priceless. I look forward to experiencing more of these extraordinary adventures with my monkey. Next time though, I will pack myself a lunch too. By the time I got home, it had been about 10 hours without anything to eat or drink. But, did I mention how cute Kai is? 

Some more from photos from 2005

As happy then as he was this time around

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

ORIGINAL POST: April 2013

UPDATED: April 2024

Don't get me wrong; I want attention on autism and for everyone to understand our struggle. One of the problems is that "awareness" is mostly misrepresented in the media. I like to think most mean well. The press finds all sorts of "feel-good" stories to air and calls it a day by April 3rd. 

Viewers don't learn about how often ASD kids are bullied, hurt, or killed. Also not shown? How many of our kids are "runners." No, not track and field. They can elope to anything that might call their attention: a body of water, music, a tree...anything! Kids can (and do) get in trouble and often tragically die. You don't hear about how we parents worry about their future. And by future, I don't mean their graduation, test scores, where they will go to college, or who they will marry. What will happen to them in this world when we are gone and no one is left to care for them? Most won't marry, graduate with a diploma, or attend a regular university. Too many kids happen to be severely affected without speech, limited toilet training, and a fascination with The Wiggles, even at age 24. Bet you didn't see that represented on the Today show this morning.  

No, you will NOT hear about that today. Today, you will hear about all the things that "don't" cause autism. Today, you will listen to Clarissa play the violin. Spencer will wow you with his remarkable ability to recall every book he has ever read. And Mary, oh Mary, how can we forget her? She used to have autism, and now it has disappeared. Or perhaps they will interview a self-diagnosed #actuallyautistic adult, usually one with minimal support needs. One who will say there is no need for a cure. Of course not. He drove himself to the interview and is probably finishing college, while my son cries in pain and is unable to tell me why. Success cases do exist, but there's much more to A U T I S M than the few televised "inspiring" stories shown on April 2nd. 

Forgive me for being a little cynical and raining on the "blue" parade. I am a very positive person. Really, I am. But I also call it as I see it. We don't live in a bubble. We live in a ruthless world. One can think, act, and be all glitter and rainbows, but the reality is that autism is incredibly misunderstood. And that can have lethal consequences. I want to feel/see a sense of urgency from all of the professionals interviewed on TV when the world is watching. I want to see our government acknowledge our panic and implement a real action plan. I want special interest groups out of those decisions. I "celebrate" Dylan and all of his accomplishments, 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 words "happy" or "celebrate" along with "autism," I want to scream. 

I have been dealing with "autism" for the last 22 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 during these last couple of decades and might perhaps offer some insight into things we have dealt.

When did Dylan first get diagnosed?

At age 3. I took him to get diagnosed at 15 months, but they refused to by saying he was too young and we had to wait until he was older.

When did you realize something was wrong?

At about 13 months, I noticed he stopped babbling, lost eye contact, and quit making sounds. He was (and is) a happy child making it 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" and "...boys speak later, Bren. Nothing to worry about." 

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. Anger still comes and goes. I was very angry and depressed for a while, right after diagnosis. If you want proof, just read the first couple of entries on this very blog. Furious at the world and anything that came my way. Now, I am just angry at the morons leading the way in fundraising and research. I am frustrated at the current glamourising of autism. 20+ years and the entire spectrum still isn't included when discussing autism. Give me a fucking break! Bargaining for me is ongoing. Acceptance, well, a part of me finally accepts that Dylan 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, Gluten Free/Soy Free/Casein Free/Dairy Free/Dye Free/Peanut Free primarily organic diet, distilled water, Hyperbaric Oxygen Therapy, stem cell replacement, ABA piano therapy, various nutritional supplements (glutathione, probiotics, vitamin D, and vitamin B12, antifungals, natural household products and endless blood, urine and stool tests, MRIs, and a bag of chips. Now in adulthood, we have started to dabble in S2C (Spelling 2 Communicate). Seems promising!  

Which ones worked the best?

It's hard to say which worked best when you do everything at once and back to back. For starters, 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 whenever possible to avoid excess hormones and pesticides). Isn't that the same for us all? Food 100% has a direct impact on his behavior. ABA would be my therapy of choice; it armed Dylan with communication tools he still uses today, Vitamin B12, probiotics and glutathione (most kids on the spectrum are low on this) are the most critical ones for Dylan. 

Where is Dylan on the spectrum?

He's not a severe case but also not high-functioning enough to be mainstreamed or casually converse with me. Dylan can speak, but uses limited speech to request things he likes or wants. "Mommy, lunchtime." "I want iPad please." 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 we adults sometimes pace back and forth while on the phone? That's a type of stim. In Dylan's case, he might hum softly or squint his eyes before his hand. He might look at a wall from the corner of his eye with his face next to it. A current one has been 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 out of context. "I give up." " Let's do this again." "Everything tastes better when you're camping out!" The only positive to the scripting is that sometimes he uses those "lines" to attempt to express himself. If, for example, his computer is not working, he will come to get me and say, "That's not it; try again." It's a line from a computer game, but I'll take it! 

Dylan was fully potty trained by age 6, but still can't properly brush his teeth. Haircuts used to be a nightmare, although that has finally improved. He can read and write at about a 3rd-grade level. Although he cannot answer much about what he reads, he can sing songs in their entirety and recall choreography (takes after mommy after all). He thankfully no longer has floor tantrums, but meltdowns still exist. Those are short-lived, but intense when happening to an "adult" like Dylan. Forever toddlerhood. He will go into extended crying fits occasionally, but has learned to self-soothe by deep breathing, counting down, or walking away from the situation.

What is the hardest part about autism?

I worry, knowing that he doesn't know malice and that he can't tell me if anyone is hurting him. He's as innocent as a baby. Anyone can stand in front of him, call him all sorts of names, push him around, and he will either ignore it, think it's funny, or not know where it could lead. 

Knowing that I will never see him get married or hold a 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 terrible from happening to him? How do I live and enjoy "now" if I know this situation probably does not have a happy ending? I do try to look past it, but it's not easy to be on a constant emotional roller coaster when autism affects us all day, every day. When I take a step back and look at the big picture, I know we have it easier than many other families, yet it's still hard. 

What do you think caused his autism? Do you think he was born with it?

I believe he was born perfectly healthy (and I have plenty of video evidence to prove it). I strongly believe in the genetic predisposition with an environmental insult theory. We live in a very toxic environment (and I'm not talking about politics). I highly doubt our bodies were made to handle the high amount of "insult" that we put into them every single day. And it's more than one thing: Pesticides (airborne and in our homes), hormones, antibiotics, and artificial everything in our food, overprescribed antibiotics in infancy, and an overly aggressive vaccine schedule (using a one-size-fits-all model instead of treating on a case-by-case basis depending on family history and/or spacing them out). There is no such thing as a genetic epidemic. 

Why don't you support Autism Speaks, wear blue or light it up blue?

Long story short: the "blue" everything stems from Autism Speaks. That organization has strayed far from its original goal of ambitiously treating, innovatively researching, and responsibly educating while leading from the heart as a family-rooted organization. They continue to mismanage the millions fundraised through the years and have sold out to special interest groups. No, thanks. Pass. 

I no longer find comfort in autism symbols, blue t-shirts, and performative one-day events as I once did at the beginning of our journey. Often, it feels like we are our own cheerleaders and wasting our time. Autism is unfortunately part of our lives, but I don't want to lead with it. I don't want our family defined by it.  

What organizations do you support?

I support any local Puzzle Peace Now, Spectrum Dance Therapy, Surfers for Autism, and Surfers Healing.

What advice do you give new parents or parents of newly diagnosed children?

Find a doctor who will work with you on all aspects of your child's health care and not one who will make you feel inferior for daring to question his/her opinion. Take a close look at your family medical history. Test for possible MTHFR mutations when pregnant or with your child (look up its significance when cross-referenced with autism). If a vaccine schedule has already begun, pause and run a titers test before you continue with booster shots. If you choose to space out vaccines, make sure never ever to vaccinate a child that is sick. 

Look into everything that touches or goes into your child's body. It's not just food. That's an obvious one. 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 theory is that every little thing adds up to a whole lot of environmental insult to their bodies. Toxins greatly affect focus and behavior for us all.

Do not wait to start appropriate therapies. Attack them all. Decide what works for YOUR family and stay firm 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. It is always best to donate and support on a local level! 

Teach your typical children about tolerance and patience. Practice this as an adult as well as towards other parents. Not every child who 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 simply asking about it will give you a broader perspective. 

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

Enough is enough.  

Thank you for reading. 

This blog is no longer active. 

Follow my other blog and podcast: DISORDERLY BLONDES.

Read the latest update on Dylan's guardianship HERE. 

Never a dull moment. 

Dylan today

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 as 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 ten 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. The technology was now better three years later, so it caught it. This is what we now know. Quinn has hypotonia, a developmental delay, an MTHFR mutation (described in an older post) and a 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?  

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 and 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 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 like 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, 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!