No one knocked on our door yesterday.

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.


Photo courtesy Cabrillo Marine Aquarium

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.


Cabrillo Aquarium Apologized. And Wants to Make Things Right.

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, [...]

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There’s panic swirling among many parents in California, after Judge Kimberly J. Mueller of the U.S. District Court for the Eastern District of California ruled in favor of California Concerned Parent Association and Morgan Hill Concerned Parent Association, granting the two non-profit parent-run groups access to nearly 10 million California student records. California Concerned Parent Association (CPA) [...]

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In 2004 our son Andrew was diagnosed with severe autism (by today’s DSM-5 diagnostic standards, a level 3 in severity). Since then, the amount of sleep we have lost worrying about our son’s safety cannot be quantified. There is no chart or graph or equation in existence that can statistically depict the fear we feel [...]

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I have a little secret to share with you. Come here. A little closer. Okay, you ready? There are people with autism among you. In fact, you may be standing next to a person with autism RIGHT NOW. I’ve included a visual aide to assist you in the identification of someone with autism. Pay close attention so [...]

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