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