I am not paralyzed
by sadness anymore 
as I roam the toy aisle 
at Target

I want you to know 
it gets better 
(and then it gets a little worse, but then 
it gets better again. 
and that’s just before breakfast. 
You get the idea). 

on the eve of his 21st birthday
I am not buying my firstborn 
a six pack
or promising 
to pick him up 
from a bar 
with his bleary eyed friends 

I am here 
instead
in this toy aisle I know so well 
my eyes scanning rows 
of Lightning McQeens 
and Maters
until I spot a flash of bright yellow 
And yelp with joy 
as I unearth 
Andrew’s beloved 
Cars character 

Cruz Ramirez
will join the others 
an impressive collection 
of Disney Pixar’s finest 
nestled among 
Thomas and all his Friends
enough R2D2s 
to make George Lucas jealous 
and dot markers in all the colors 
(trust me, all of them) 

I am happy
standing here
in the toy aisle at Target 
for the 21st year in a row
as I imagine his giant grin
lighting up his face
his hands
fluttering
towards space 
unwrapping gifts
that are perfectly him 
that I will buy 
again
(and again)

and he doesn’t know 
it’s his birthday tomorrow 
and it’s ok
he doesn’t have to 
I do 

I know it enough 
for the both of us

here in the toy aisle
at Target

This post has been a long time coming. One of the biggest things to happen to Andrew and our family has been the incredible discovery that he has a rare genetic disorder called Syngap1. We are now part of the rare disease community, which has been such a huge adjustment for our family, but we’ve met some incredible humans along the way, and are part of a phenomenal foundation that I want you to learn more about. So read on to find out what the heck Syngap1 is, and why it matters so much to our family. In fact, I think I’ll read along with you, since I’m STILL processing this news.

***

He had just turned two when he was diagnosed with autism. 

It was 2004 then, and autism was rarely discussed in the pediatrician’s office, but Andrew’s missed milestones had begun piling up and his doctor was no longer able to ignore what was right in front of him: a child unable to speak or play with his toys or point to airplanes in the sky. A child who had lost what few vowels and consonants he had managed to string together before his first birthday, and whose chubby arms would begin flapping whenever he was excited or stressed. Gone was his eye contact, his beautiful blue eyes always seemingly fixed on something right past us. Gone too were the silly games we used to play together, his ability to reciprocate having seemingly vanished into thin air overnight. 

We watched as our friends’ children, similar in age to our son, met their milestones with ease, while Andrew seemed suspended in developmental limbo. It wasn’t long before those same kids were surpassing Andrew in every way, and our firstborn son was regressing before our very eyes. A few weeks after being diagnosed with autism, Andrew collapsed in our front yard, his first drop seizure rendering him unable to move his body; it’s difficult to describe the fear and helplessness we felt as we watched seizure after seizure take our little boy hostage. As the months passed, epilepsy was added to his autism diagnosis, with global developmental delay and intellectual disability following soon after. 

Before the ink had dried on Andrew’s medical records, we had joined local and national autism foundations, hoping to find answers and support in a growing community we now found ourselves a part of. To this day, we remain friends with many of the families we met in those early years of our autism journey, bonded forever by a shared passion for improving quality of life for our children and bringing autism awareness into world. But despite our involvement in these organizations, connections with other autism families, and seeing autism become a mainstream subject in schools, medical communities, and society as a whole, there was a loneliness to the road we were on with our son. 

While autism certainly encompassed a part of Andrew’s challenges and unique perspective on the world, so much of our son still seemed unaccounted for. The intractable epilepsy, hypotonia. severe intellectual disability and global developmental delay all remained part of the bigger picture of who our son was and the many struggles he was facing in his life. Years of genetic testing had yielded nothing more than negative results, and though hope remained a quiet background presence, we resigned ourselves to likely never knowing Andrew’s full story, and instead threw ourselves into advocacy work, therapy appointments, IEP meetings, and helping our son live his very best life any way we could. 

And then it happened.

His new epileptologist wanted to run a genetic panel, hoping it would uncover answers about Andrew’s epilepsy and guide us towards better treatments and seizure control. We were sent home with a small box filled with everything our phlebotomist needed to collect the necessary samples. We made the appointment, had Andrew’s labs drawn, scheduled a FEDEX pick up date, and then forgot all about it.

Until the phone rang two weeks later.

He was 16 when we got the news.

I will never forget sitting in the epileptologist’s office, watching as he held Andrew’s genetic report in his hands. He began reading from the first page and my eyes blurred from the tears as I heard him say the words “genetic variant,” “rare disease,” and “SynGAP1.” I didn’t know what any of it meant yet, but in that moment, I knew we finally had the answer we had been so desperate to find. The specialist handed me the report and as I read the symptoms and clinical presentation of SynGAP, it was like reading our son’s own developmental history, as if someone had written nearly word for word what we had witnessed and what he had been through over the years. The missed milestones, the regression, even his clumsy gait was on there. For the first time in sixteen years, we had our child’s complete diagnosis: he had a rare disease called SynGAP, and it caused his epilepsy, global developmental delay, intellectual disability, and autism.  

It’s been three years since we found out. There are days I’m still wrapping my brain around the news. Our identity for so long was wrapped up in all of Andrew’s separate diagnoses and while having them all explained by SynGAP has been amazing, it’s also taken some adjustment. Am I still an autism mom? Yes. But now I’m also a SynGAP mom, and in a lot of ways, it feels like we are starting over. Where I have been well-versed in all things ASD, I still stumble when it comes to this rare disease, learning as I go while navigating a new community of families and advocates. One of the greatest gifts of receiving this diagnosis has been the amazing people we’ve met so far along the way. We joined the SynGAP Research Foundation, founded by two SynGAP parents and dedicated to funding science to accelerate treatments aimed at improving our loved ones’ quality of life. In the same way autism families have propelled meaningful changes over the years, SynGAP families too are doing what is necessary to give their children access to the best treatments and services. While rare disease is very different in a lot of ways from autism, the common denominator among these two groups I am grateful to be a part of remains the same: wanting a better life for the people we love.

Ever since Andrew’s diagnosis, I think about how many more people out there have undiscovered SynGAP. The most current SynGAP census shows 883 patients globally, and 246 in the United States, with the oldest known individual with SynGAP to be in her 60’s. But we know the number of people with SynGAP is much higher, which is why stories like Andrew’s matter, and they need to be shared. As the autism community well knows, there is strength in numbers; it’s how we’ve moved mountains for individuals with ASD. The rare disease has its own mountains we need to move and helping families with SynGAP get properly diagnosed is imperative for furthering our mission to fund science, expand supports and resources, and bring awareness to the world.  

Every once in a while, I’d stare at it, consumed by its silence, wondering in the stillness of the afternoon if we had done the right thing.

For fourteen years, except for weekends, holidays, and the occasional sick day, a therapist has been in our home. Five days a week. Fourteen years. I’m not good at math but I know that adds up to a whole lot of hours spent with people trying to help us help our son.

And now it’s quiet.

The decision wasn’t made lightly. It wasn’t anything anyone did or didn’t do, though the journey certainly wasn’t without its mistakes, mismatched personnel, misguided advice. There were the early years, when Andrew was two and we spent a solid year trying to make his chubby arms stop flapping.

“Quiet hands,” they ordered us to say.

And we listened, too overwhelmed with his diagnoses and the fear that no one would accept him as is. “Quiet hands, Andrew.” Too new to know he or we weren’t the problem. Too naïve to believe we could and should blame society, instead of autism.

Ah. But we know better now.

And when he flaps we smile, and wonder aloud if one day he’ll actually take off and soar into the sky. Few things are as beautiful as watching him try.

But for everything that wasn’t right, a thousand things were.

The special therapists who came through our door, who announced themselves every afternoon with those familiar knocks, who started out as strangers but who left as family, they changed our lives, and more importantly, Andrew’s life for the better.

And we hope, in some small, significant way, we were able to change theirs as well.

They were told not to get too close to us. That it was inappropriate to be friends with the families they served. You try having someone in your home each day, watching as you navigate parenting your child with special needs, watching as you fight with your husband, watching as you burn dinner.

Watching as you

forget to pick up your other son from practice
take a phone call from a creditor
find out your child was abused at school
question every decision you’ve ever made and let guilt and regret consume you
wonder if your mammogram will be clear
take your son to the hospital with seizures.
You try that and tell me we can’t get close with the therapists who work with our child each day. For any of it to have worked, there was no other way to be but close.
And in turn,
We’ve watched them
Get married
Have babies
Go to grad school
Move away
Get new jobs

We’ve shared coffee and carbs and tears. We did the unimaginable: we became friends. Family. There. The secret’s out. Someone call HR and let them know allowing someone into your personal lives each day does not lend itself to cold, distant professionalism. This is our home, not a clinic. If you didn’t make yourself comfortable here, you’d never last.
Oh but last they did.

Christie was with us for 3 years. She came when Andrew was four. She helped us see that ABA therapy was only as good and respectful and effective as the therapist who was implementing it. She helped right the wrongs of previous encounters and she understood Andrew was not a statistic. She pushed me because she believed in me and that made me a better mom. She left to start a family, a new job, and we sobbed on the couch but we knew we’d be okay because we’d see each other again. And we do.

Then Kristen came along. She deserves a medal. With us for eight years. Unheard of in this field! She’s seen us through some of the best and worst times of our lives. She helped give Andrew his power back when someone evil tried to take it away. She has been instrumental in so many of our son’s successes. She rejoiced and grieved with us. A lot happens in eight years and she was there for all of it, never wavering in her commitment to our son and our family. Then one day she left to have a baby. She came back. She left to have another one. And still, the sadness of those departures was overshadowed by the joy that our boys have an aunt they can always count on, forever.

Kirsten – who arrived as Kristen (yes, you read that right) was about to give birth for the first time – showed up doe-eyed at our doorstep, and quickly endeared herself to Andrew. She sat coloring with him for hours each day, trying to earn his trust before she started bossing him around, and eventually he let her sit right next to him. She was with us for two years, her big heart and kind smile greeting us each day as we waited in the front yard for Andrew to come home from school. Now she’s headed to grad school, ready to take on the next chapter of her life, and I have no doubt she will remain in ours.

Ariana and Ashley didn’t have a chance to stay very long, but don’t think they didn’t make their own impact on our family. Each reminded us that you don’t have to know someone forever to know they are good and dedicated and truly want to help your child.

You can imagine – with all of these special relationships we’ve forged along the way – how difficult it was to part ways with truly the only thing we’ve ever really known. Fourteen years of this and you forget what it’s like to live without it.

But, like any methodology, ABA doesn’t address all of our son’s needs, and while we’ve certainly learned a lot along the way, Andrew deserves for us to challenge the status quo and see what else is out there for him, and for us. He has a robust program at school, works harder than anyone I know, and he’s exhausted. Being able to come home from school and not be faced with three hours of therapy will hopefully restore some of his energy and give him a chance to take a deep breath.  And to be honest, I’d like to be his mom for a little while and not his therapist. The burden of that has caused a lot of sleepless nights as Mike and I anguish over our additional roles and the responsibilities and repercussions they carry. There really is no other methodology out there that forces the parents to take on the role of the professional. It’s a lot, and we need to see what’s on the other side of that.

Which is why it’s time to try something new. To give Andrew a break. To see what happens when no one knocks on the door and we are left, just the four of us, to fend for ourselves.

I imagine it will be okay.
After all,
we’ve been training for this for a long time.

I’m so excited to announce that Autism Awareness Day at Cabrillo Marine Aquarium on Monday, April 2nd, is shaping up to be a wonderful event for special needs families. While my relationship with the aquarium started off on the wrong foot, I’ve since been cultivating a wonderful partnership with Ed Mastro, the Director of Cabrillo, and his team. This man genuinely wants to make this aquarium accessible for all and is so invested in learning more about autism and how he and his staff can make everyone feel welcomed and accommodated. It’s so rare to have such a genuine response from anyone, but Ed and Cabrillo are the real deal and I can’t wait to bring Andrew back for a “redo.”

I’ll also be conducting a staff training a few days prior to the autism event, along with two other professionals working with the autism population, and I think everyone will benefit from what is shaping up to be an informative and enlightening introduction to individuals on the spectrum and the real challenges they and their loved ones face every day. My hope is not for everyone to become experts in autism, but rather, to empower staff, and inspire them to support guests with developmental disabilities in such a way that makes Cabrillo a favorite place to visit for our families.

The event on April 2nd will be closed to the general public, and entrance is free, though Cabrillo is requiring guests to register through Eventbrite.

Highlights of the day include:

Exploring different habitats in Southern California
Touching local tide pool animals
Hearing the sounds of whales
Seeing baby jellyfish
Hatching grunion eggs
Racing plankton
Feeding abalone
Watching movies
Dressing-up as ocean animals

Additionally, arts and crafts and quiet areas will be set up in the library. There will also be an area outside where individuals who need a break can go and relax. Attendees are encouraged to bring their own food if they’d like, and eating areas will be available in the courtyard. The aquarium also features a family restroom.

Our family is planning to be there that day, and I would love to meet you if you plan on attending. I have the best readers, who always go the extra mile for the community, and this event and opportunity for education would not be possible without your active contributions in advocating for our kids.

I have a feeling Cabrillo is going to be a family favorite of ours, and I’m so grateful that amazing opportunities have come from something I know the aquarium will never let happen to someone like Andrew again.

If you’re reading this blog post, chances are you’ve read this one, got super fired up, and now you’re here for an update.

First of all, I want to thank everyone who supported Andrew and our family. Many of you took the time to make phone calls to the aquarium, send messages via social media, leave reviews, and connect with us personally, and your efforts paid off.

After playing phone tag throughout the day, Ed Mastro, the Director of Cabrillo Marine Aquarium in San Pedro was finally able to connect with me this evening. We spent an hour on the phone and the conversation began with a heartfelt, genuine apology from him on behalf of the entire establishment. Ed made it very clear that while the aquarium has always worked hard to be an inclusive place for everyone, this incident highlighted the fact that more needs to be done. He admitted he has very little knowledge about autism and realizes staff training in this area is imperative. He has graciously asked for my help and I have enthusiastically agreed to assist in their commitment to learning more about our kids and how they can make families like ours feel welcome, safe, and accommodated.

Ed also made sure to let me know they will be paying to fix Andrew’s iPad. He actually offered to buy a new one, but that’s not necessary as the screen is cracked and can be fixed. We have an amazing place we use so we’ll be sending the bill to Ed and he’ll make sure to get that all sorted out.

The aquarium will also be inviting Andrew’s school to enjoy the facility and get a more personalized tour of the exhibits. Apparently they even have beach-friendly wheelchairs on hand that can go in the water, so students with physical limitations can experience the ocean during their visit. I have a feeling Andrew will want to try one of those out next time. Actually, I’m pretty sure he’ll request to be parked in the same exact spot he was in the other day so he can flap and squeal as the water rushes into the tank. Over, and over, and over again.

Finally, Ed has asked for my assistance in planning a very special autism event at Cabrillo. The details will be announced in the coming weeks, and I’ll be sharing those here and via Facebook and Instagram. Suffice it to say, I believe this event will go a long way in turning this incident with Andrew into an opportunity for the aquarium and our community to cultivate a long-lasting and meaningful relationship that benefits everyone.

Advocacy is hard. It’s often very messy, and almost always comes on the heels of a painful, humiliating experience. Those of us who advocate for our kids know very well the heartache that comes with our loved ones being discriminated against and mistreated. Rarely is an issue responded to quickly, and with a genuine desire to rectify the situation, but Cabrillo has managed to surpass my expectations and I truly believe they are more than sorry. They are committed to getting to know our kids and making sure my son and your sons and daughters feel comfortable and happy and welcome at their aquarium. Just the way they are.

As a result, I’d like to kindly request that if you left a negative review or comment on Cabrillo’s Facebook page or Yelp, you take a few seconds to remove it. I think it’s just as important to respond to their efforts to make things right as it was when things went south. I promise to call on you if I ever need help in the future. You guys mean business!

I’m so pleasantly surprised at the way things have turned out. I was so upset yesterday and most of today, but tonight my faith in humanity has been restored, and that’s thanks to all of you who got involved, and to the folks at Cabrillo who were determined to make things right.

I’m glad I waited to speak with Ed before returning the media inquiries I received. Now instead of doing a pissed off interview, I’ll likely be doing a story with a local news station on the power of community and second chances. With all the bad news in the world, a story with a happy ending is something I can get behind.

Stay tuned for the details of Cabrillo’s special autism event; I can’t wait to share them with you.

And if you ever need someone to speak up for your kid, you know where to find me.

We’re in this together. You guys reminded me of that today.

UPDATE: There is a wonderful update to this story, so once you’re done reading this and you’re all fired up, head over here to hear about
the aquarium’s response.

My son was kicked out of an aquarium today.

My non-verbal son with special needs – who was with his class and support staff on a community outing to a local aquarium – had to leave because he was flapping his arms and making joyful noises while watching water pour into a large tank filled with sea anemones.

Because someone complained.

How miserable do you have to be to complain about an overjoyed kid marveling at something most of us take for granted?

How pitiful do you have to be to see someone with developmental disabilities and not make space for that person’s unique form of communication?

How pathetic do you have to be to ask the staff to do something about that annoying disabled kid?

And to the staff at Cabrillo Marine Aquarium in San Pedro, how spineless do you have to be to accommodate some ignorant, insensitive jackass instead of sticking up for my son, who you were informed had a severe form of autism, and who had every right to be there and enjoy the experience, even if he expressed his enthusiasm in a way others may not understand?

With so much anxiety and divisiveness going on, with so much tragedy and heartbreak at the forefront of every news story, THIS is what offends you?

You’re lucky I wasn’t there.

While my son’s school staff may have attempted to intervene in a calm and respectful manner, I would have exercised far less patience and understanding. Partly because I’m a dick, but mostly because you’re not the first person to assume your existence is more valuable than my son’s. You’re not the first person to assert your dominance in a public place and claim you have more of a right to be there than my child.

And Cabrillo Marine Aquarium, you’re not the first place of business to discriminate against my Andrew, and you won’t be the last, but trust me when I say mine is not the family you want to be messing with. I have a big mouth and I’m not afraid to use it, especially when I’m using it to say the things my son cannot.

I’m grateful Andrew has always been welcome at The Aquarium of the Pacific, where hand flapping and happiness aren’t considered defects and my son isn’t regarded as a public nuisance. And I’m even more grateful his teacher and support staff attempted to advocate for him and made sure to contact me to let me know exactly what happened.

If you’re wondering just how horrendous Andrew was being, his 1:1 behavior interventionist managed to get video of  the visual and auditory injustices everyone had to endure. Trigger Warning: Happy boy in wheelchair flapping his arms vigorously and emitting sounds of joy.

Andrew flapping and happy at the aquarium

Like I said. This isn’t the first time, and it’s certainly not the last. But I’ll be damned if I don’t make people think twice before they try to pull this kind of shit with someone else.

Now, Muppets aren’t typically a source of controversy, but Julia happens to have autism, a diagnosis that often leaves its community fractured over disagreements about nearly everything: causes; interventions; to cure or not to cure; person first vs. diagnosis first language; to embrace the puzzle piece or not; the list goes on and on, and Julia is no exception. At the center of the heated discussions is Julia’s portrayal of the neurodevelopmental disorder, which some parents say misses the mark by overlooking the many difficult and often serious behaviors and co-morbid conditions affecting their children on the spectrum. Behaviors like self-injury, aggression, and wandering, and co-morbid conditions such as epilepsy and gastrointestinal problems; topics which are rarely, if ever, explored through television, film, and other media portrayals of autism.

These families, who are living daily with the most severe form autism spectrum disorder, are, once again, feeling left out and ignored, their reality of autism pushed aside and buried in exchange for a version they cannot relate to. I can’t say I blame them. Severe autism is hard. It’s isolating. It’s messy and lonely. It’s rude stares from strangers and emergency landings in airplanes. It’s changing diapers on public bathroom floors and GPS devices strapped to shoe laces. It’s dead-end doctor visits and sleepless nights.

I should know.

It’s the kind of autism my son has. Our matching padded helmets hang in the front hallway, easy to reach when he cannot be consoled and the only way he can communicate his pain and frustration is through head-banging and hair pulling.

Naturally, this means I must agree with those who say Sesame Street should be showing more of OUR kind of autism, right?

Wrong.

Though I’m still about 6 weeks away from getting my grubby little hands on my MS in Child Development, this degree is costing me a fortune, so I’m going to start putting it to good use now, if you don’t mind, since this topic is definitely in my wheelhouse.

Sesame Street’s target audience is not you or me. It’s not your neighbor or my great aunt Freida. It’s not your teen son’s best friend or that dick that keeps parking his car in the handicap spot with no placard in sight cause “it’ll just take a second.” The target audience for Sesame Street is 3 to 5 year-olds.

3 to 5 year-olds.

The same demographic that loves glitter and will likely eat roly poly bugs when left unattended.

Knowing this, it’s necessary to ask ourselves how a difficult subject matter such as autism can and should be delivered to this target audience using developmentally-appropriate content.

Let’s break it down like this. When Sesame Street teaches this same population of viewers about another serious subject such as stranger danger, do they do a segment on human trafficking or do they develop awareness about this topic in a way that is mindful and sensitive to the age group? And, before you hit send on that hate mail, I’m not comparing autism to human trafficking. I’m simply making a point about the importance of knowing your audience, and in the case of autism, Sesame Street – at least so far – is on point. In just their first episode featuring Julia they’ve managed to explore several themes relevant to the disorder: sensory overload, echolalia, stimming, and the potential for hurt feelings among typically-developing peers who could feel ignored by someone on the spectrum when they don’t respond to their attempts at conversation and play. This is important work happening here guys.

What is Sesame Street’s goal with bringing Julia onto the show? In my humble opinion, it’s to give young viewers an introduction to a disorder they will very likely encounter somewhere along the line. Maybe some of them already have, whether through a family member or a preschool classmate. It’s a conversation starter; a seed that’s being planted in young, developing minds, and tender, open, compassionate hearts. It’s priming this next generation to not just tolerate autism, but to live alongside it as allies and advocates; to hear the word and see the person and not recoil out of confusion and fear, but to embrace the differences in their peers diagnosed with the disorder. It’s laying a foundation; a sturdy starting off place that allows for continued education about and insight into our loved ones, some of the challenges they face, and the triumphs they work so hard for.

Julia’s job is not to make you and I feel like our lives are finally being accurately captured, or to encompass every heartbreaking roadblock our children face. Again, I don’t blame you for wanting that; I want it too. Our children’s stories deserve to be told. Our families deserve a voice. I just don’t expect Sesame Street to be the platform. The things you and I have watched our sons and daughters go through is not appropriate for these tiny little humans to be confronted with. I can barely make sense of it myself most days; how can I possibly expect a young child to digest it?

I agree with you on this: Our families need more representation in film, art, and media. It’s hard seeing versions of autism that never seem to match our own. There’s a lot that our children go through that isn’t being told, that needs to be told.
So, let’s tell it. To an audience that isn’t learning its shapes and colors.

I’ll start. I promise. In fact, telling Andrew’s story is truly something I feel called to do and it’s about time I do it.

In the meantime, I ask that you give Julia a chance. She’s pretty spectacular. The way she flaps her arms gives me goose bumps. I so wish she had been around in 2004, when we were first diagnosed and I bought into the idea that flapping was something we had to eradicate in order for Andrew to be accepted in the world. How I wish I could take back all of those “Quiet hands,” commands. I’m so glad moms and dads facing a new diagnosis have Julia to show them it’s okay to flap; in fact, it’s downright beautiful.

Julia is not like my Andrew. He is, after all, a 15-year-old boy living with very severe non-verbal autism, intractable epilepsy, PTSD, and intellectual disability. He’s also in the midst of puberty (Sweet Merciful Mother, save us from these hormones). But what they do have in common is the right to be loved and accepted, accommodated and respected.

And thanks to Sesame Street, I think Julia’s viewers are going to help make sure of that someday.