Love and Cupcakes: An ABA Update

When you have a child with special needs, you have lots of decisions to make that you never planned on making. We've struggled with knowing which therapy interventions to choose and which to pass over. Especially ABA, one of the most common treatments for people with autism.

In our family, we have strong values about what it means to be a whole, authentic person and how we should treat one another. We have Brene Brown's parenting manifesto hanging on the wall of Baby Bee's room. We strive to be gentle, child-led parents, who practice emotion coaching and regularly engage in our floor time therapies. We try to say "yes" more than we say "no", and save our "no's" for when it really matters or when it doesn't matter at all, but we have a really strong personal preference. We let Baby Bee eat re-fried beans off of two plastic horses rather than spoons, because, well, what do I care if that's what he needs to do every. single. time. he eats re-fried beans? At least he eats them.

So when it comes to choosing a therapy that is different than our family's usual approach, we've had to do a lot of reflecting. 

You're A Good Mama

I used to think love—deep, radical, boundless love—was a family thing. Maybe a close friend thing. But I was wrong.

I started to notice it after Baby Bee was born, before we had the ASD diagnosis. We had doctor appointments and specialist consults and hours of crying and screaming and not knowing what was “wrong.” We suddenly had people at our door with food. People coming to clean the kitchen and take out the trash. People running to the store to pick up prescriptions. People stopping by to offer a listening ear. We hardly knew most of them.

Fast forward a few months and we experienced the daily kindness of receptionists and support workers from private occupational therapy to public Early Intervention offices. Folks that worked hard to get us connected to services, said comforting things and never forgot to ask how we, the parents, were holding up.

Then there was the kind mama from our local Buy-Nothing group who responded to my desperate plea for an infant swing (for my 25 pound toddler) because our old one broke and Baby Bee doesn't sleep without it. (We've tested this theory.) That very day, she drove out to my house, with her own kids in tow, to drop off a replacement swing. On my porch. While I was at a doctor appointment with Baby Bee. I wasn't even home to thank her. I didn't know her.

Did I mention my town raised money to install a swing at our local park for kids and adults with disabilities? And what the community didn't raise, the local government covered? I felt the entire community’s support as they created a space my son and others would someday feel comfortable exploring.

I felt that deep love again when I met up for our first play-date with a new friend that just moved to town a few weeks back. “You’re a good mama,” she said as I was silently wondering if I’d done the right thing by bringing my son to someone’s house and awaiting his inevitable meltdown. She meant it.

We live in a small town where love abounds. I've come to expect a high level of support from neighbors, organizations, moms, and yes, even the local government. We’re incredibly lucky. 

Consequently, we’re nervous to venture beyond our community’s cocoon.

But yesterday, love showed up silently, in a city that’s not my own. We went to one of those big box stores to stock up on groceries (and thus reduce our need to venture out again anytime soon). The decision to bring Baby Bee grocery shopping is usually more out of necessity than true choice. We got out of the car.

“Cart. Cart. Cart."

I knew we were in for it. We approached the red shopping carts stacked up against the building. It was busy. People rushing. Cars pulling in and out. “Cart! Cart! Cart!” His chanting increased to a frantic level.

Deep breaths. “Alright Baby Bee, we’re going to put you in the cart so Mama can get groceries.” I held my breath waiting for what I knew was coming next. The screaming started; I was grateful we were outside. I wheeled us over to a less busy area, partly for him and mostly, for me.  Something happens when your child gets a diagnosis or acts differently than other kids. You start to pay more attention to what people say and do. You start to listen every time some stranger—who is still developing their own skill set of appropriate social commentary—demonstrates that they have room to grow.

And it’s always at the grocery store because it’s just about the only public place you bring your kid anyhow.

I whispered our next steps, hoping it would soothe him. “Now, I’ll buckle you up so you stay safe in the cart. Here’s the buckle. Click. Click”

“Cart. Cart. Cart. Ouch! Ouch! Ouch! Cart. Cart. Cart. LOUD! LOUD! LOUD!”

He was yelling now. “It IS loud, isn't it Baby Bee? I hear lots of people and cars and carts. Listen? Do you hear that?  Woosh, woosh.” I did my best imitation of the electric doors we had to enter sooner or later. “That’s the sound of the doors opening and shutting. In a moment we are going to go through those doors, and walk up and down the aisles to get the food we need.”

“LOUD! LOUD! LOUD!” and then suddenly, “Bike. Big. Bike. Bike. Bike. Bike.” I knew what he was thinking. Our local grocery store has red carts too—and full-sized bikes around the perimeter as decoration. I guess it’s a small town thing.

“ The bikes aren't at this store, Baby Bee.”

“BIKE! BIG BIKE! BIKE!” He was fixated. He’d spend the rest of our trip intermixing “Bike!” and “Loud!” and “Cart!” If that was all that happened we’d consider it a success.

But then someone bumped the cart. He was crying now, the full on meltdown crying that seems to have no end when you’re in the middle of it. Occasional bursts of “Loud!” and “Ouch!” came through with a fair number of “No! No! No!’s” thrown in for  good measure.

People were staring and avoiding in turn. Shaking their heads.  As a parent, you wonder if people will blame your parenting. Your genetics. Your decision to reproduce.

 Or the fact that you went back to work at two months postpartum instead of three.

I digress.

When I looked up, I saw her. A mom with a preschooler stood to the side watching. I whispered into Baby Bee’s ear to drown out the sensory chaos. She leaned in to hear what I was saying. She watched the way I pressed the sides of my hands on either side of his body to provide some deep pressure and used my body as a shield from the visual stimulation around us. Her daughter stood, watching us too.

Several minutes later, Baby Bee had calmed and picked up his “bike, bike, bike” chant again, which I took as a positive sign. I gathered my courage and faced the ever “wooshing” doors.

She was still there. Not staring. Not rudely prying into our difficult situation. But standing respectfully off to the side seemingly observing, educating herself, and maybe rehearsing the conversation she’d have with her daughter about how everyone has different challenges in life. Her look was compassionate and encouraging.

And then she caught my eye and smiled at me with a smile that conveyed it all:

“There’s more of us out here, you know. We’re here if you need us. If you've got too much going on, we’ll bring you dinner and clean your kitchen. And I noticed that your kiddo has a lot going on, are you doing okay yourself? We’ll drop the infant swing or whatever else on your porch, if you can’t pick it up. I don’t mind at all. Oh, and please, don’t worry, we already made a donation for accessible play structures at our park—your child is welcome any time he likes. Remember, you've got allies all over the place, not just at home.

And you know what else?”

 She nodded toward my little guy, chanting away, and smiled again.

“You’re a good mama.

A really good one.

I mean it.”

“Thanks, Mama,” I silently smiled back. “So are you.”

One to use the knife

"It takes one to use the knife, one to hold the animal, and one the walk in the woods and cry."*

When I started this draft a few weeks ago, I had yet to be the one to "use the knife." That's changed now.

 I came home last week to a dying chicken and the feeling of owner responsibility waiting in the backyard.  I have squished a small number of spiders (and, after the panic subsided, felt immense guilt) and probably run over a few living things with my car without knowing it. Intentionally taking the life of an animal is something I've wondered if I could ever do though. From the moment I learned she was suffering, I knew I had it in me.

I expected to feel sick as I grabbed the axe and prepared a place to make the swing. I cried as I cradled the chicken to my chest, feeling bad that I had taken so long to find the sharp axe. I shook as I laid her soon-to-be-lifeless body on the round of wood. The worry of whether I was strong enough to carry my swing all the way through teased at the edges of my mind. I knew I was physically capable; I worried that my body would cease up at the last moment inflicting pain while failing to end her life.

I took a breath, picked up the axe and swung. Once. Thoroughly.  Powerfully. Effectively. And that was it. I felt peaceful and good about my decision. Proud of my strength. Relieved to know that when it comes time to make hard decisions, I can make them. And follow through. I had fears of turning into a monster in my mind. I was surprised to learn that I felt less selfish and more compassionate as a result.

I used to be the one to "walk in the woods and cry". And that's okay.  I don't think it's a linear progression or that it's required for all to go through. I think we all have the opportunity and burden to fulfll each of these roles in some capacity at different points in our lives. I am not sure I could kill as easily if the animal were healthy or if I wasn't the only one around with the capability/responsibility. The important thing is that I am open to it changing.


*I first heard this saying from some neighbors who are very involved with land management and Native American traditions. I wish I could give credit where credit it due, but I am not sure of its origin, 

Babbling Grief

Have you ever heard a baby babble? It's heart-melting! My friend moved nearby and I'm watching her forth child (born this fall) do things my son never did. He coos. He babbles. Did I mention that? He smiles. And doesn't get lost in staring at string. She reports no obsession with toothbrushes.

BabyBee has made huge leaps since his tiny baby days but I wonder how it would have felt to have a sleeping, pooping, cuddling bundle fresh from the womb.  I thought I knew how "not normal" things were at the time; I just didn't realize just how far off we were from average. (I should have been clued in when our "birth to three" early intervention eval said we were -2.76 standard deviations from the norm in several areas. Apparently that didn't quite sink in) 

I miss those baby days we didn't have.

I'm grateful though for the tiny BabyBee days that we did have. (The toddler BabyBee days are much more fun though!)

A is for...

Baby Bee is obsessed with the alphabet right now. Well, certain letters of the alphabet that is. He loves to find the letter “B” on book titles or packages, and searches diligently for the letter “P” on buses and billboards. He points out the “W”s in whatever media I’m reading and jumps in to the alphabet song when we get to “O.” Hearing him attempt to say “alphabet” is pretty cute too.

Our family recently received a personal helping of Alphabet Soup. Baby Bee has formally received a diagnosis: ASD, or Autism Spectrum Disorder. We’d been operating under the informal SPD label (Sensory Processing Disorder) and figured there was more to the story. The letters themselves came as no surprise: ASD level 2, with some unofficial words about “highly gifted” and “cognitive abilities of a four year old in some areas” thrown in. 

In our family, A is now for Autism.

We were in disbelief at first. Did we really, finally get someone to tell us what was going on with Baby Bee? The trend, in working with families in the early years of life, is to say, “Come back later. In several years. Let’s wait and see how things turn out. He might catch up. It’s too hard to sort out right now.” So we were amazed that someone said, “Hey, your kid really does fit the profile. Here’s some letters for him!”

Then the disbelief turned to joy--help is on the way! We qualify for therapies specifically designed for kids with ASD, like ABA (applied behavioral analysis) therapy. Can’t wait to get started!

Now we are in a funny place. We are fighting the insurance company for the help that’s supposed to be here already and wondering if we will ever get a good night’s sleep—or a nap during the day for that matter.  Plus 3 to 6 months of sitting on service waiting lists seems like a long time when your kid isn't even two. We are exhausted after all this advocating and realizing that we will probably have to continue to advocate for everything in the future. We weren't scared to get a diagnosis, but deep down, a little piece of me thought having a definitive name to describe our lives, meant things would somehow get easier in their own right.

I think this is the part of the post where I am expected to tie things up. Loop us back around from A to Z, and say something clever about Baby Bee being so exceptionally smart and how lucky we are as parents. Or about how we wouldn't change a thing about him even if we could. Instead, I’ll let you share in our present discomfort, and you can know that this is where we truly are right now. Grateful, tired, grieving, hopeful...did I mention tired?

****

As far as the homestead, my energies have focused more on Baby Bee while Mr. Bee’s been doing most of the animal work. My role is primarily limited to getting a teenager goat’s head unstuck from the same gate *every single day.* No small task, I assure you. We’ll post more about those happenings soon, I hope. 

Yes We Can

A year ago my water broke with a trickle around 4am. I wasn't having any contractions so I figured it would be a while before I had a baby in my arms. At 9am I completed the art project I had been working on and insisted Mr. Bee hang it in our bedroom above the birth pool (which I refused to let him fill since I was "probably dayyyyssss away" from having a baby). 

Then we went berry picking for 3 hours in 90+ degree weather. 

I was convinced we needed strawberries for jam.  

Well, the berries went bad in the heat on my kitchen counter because labor started later in the evening and Baby Bee was born early the next morning. 

He came out screaming and didn't stop (or sleep!) for several hours and soon impressed us with strong preferences and will. Little did we know this was a sneak peak into our next year. :)

Parenting Baby Bee is one of the hardest things I've ever done. It challenges me daily and has changed me immensely. I used to roll my eyes at terms like "special needs" because they sounded so euphemistic and cheesy but I get it now. It's special not strange. Different not bad.  And sometimes it just is. 

I'm humbled by the care of our of our community and thankful to know the vulnerability of having to rely on others after very much being a do it myself-er all my life. 

And each night before I go to bed I look at my art project and take a deep breath reminding myself that we CAN do hard things. And indeed we already have.

If I Should Have a Daughter...

(watch the first 3 minutes and 40 seconds of this video for the most amazing poem;
 you won't regret it!)
 

Mr. Bee and I aren't sure if we will have a son or a daughter. It's not the type of thing you set out to choose nor that you have much control over. So we figured we'd let it be a surprise. Well, that's one of the reasons we skipped finding out anyhow.

Listening to our favorite spoken-word poet Sarah Kay reminds us of the exciting journey we have ahead of us. We hope you will continue to follow along with us and understand now why it's been so quiet on the blog front as of late--I've been sick and Mr. Bee's been busy making sure everything on the homestead stays up and running. With nicer weather, fewer chores, and feeling a little bit better in these final months, I expect you'll be hearing more frequently from us again!

The Expectant Mothers of The Homestead

If you’ve been keeping up on this homestead tour, you’ll know that Mama Duck is sitting on her clutch of eggs and Lula Mae is growing wider with her expected kid(s) by the day. It’s a privilege to watch how these mothers take care of their not-yet-arrived little ones and how their behavior changes as time gets closer.


Guarding her eggs and stuffing the nest (note how much bedding she's gathered)

The LulaBarrel is packing babies!

But I’d be remiss if I failed to tell you the other anticipated arrival on our homestead. Yes, Mr. Bee and I are expecting our first Baby Bee!

Baby Bee's first closeup!

We’ve waited a long time to share in this forum for a variety of reasons, but now that it is so close, it doesn’t make sense not to share. It’s an exciting time and I’m happy to be in the company of other expectant mothers. As my time draws nearer, I am amazed at how similar all animals act when nesting—including humans.

Let’s just hope Lula Mae and I don’t have too much in common. Our due dates are 2 weeks apart. And we’re both planning on birthing at home. =/ Did I mention she had some ovulatory complications when we were trying to breed her?

Radical Love

Perhaps I, like the rest of Americans, have been subconsciously influenced by all the candy hearts and chocolate boxes. I try not to be too consumer-focused, but it is true that I've spent the last month contemplating love. And here it is Valentine's Day and I've got a love-filled post ready to go. Coincidence? Perhaps. All I can say is that correlation doesn't indicate causation and you never know the other factors influencing the outcomes. Right?



Zelda reference or otherwise, bringing your heart along for love is the difficult part of the journey.

In any case, I'm beyond expounding the wonders of puppy love and cheap love wrapped in low-quality tissue paper. I'm talking about Radical Love. It's hard to define, but you know it when you see it. And you know, in the funny little way that you feel small yet as expansive as the Earth, when you practice it.

It is the silent chant inside your heart, as you stare at the screen watching a heartbeat and listening inattentively to the doctor speaking her foreign language of abbreviations. "Please don't die, please don't die..." is all you hear inside.

It happens when, after you hear that dreaded diagnosis, the nightmares return, recovery gives way to relapse, or life requires you to move in a direction that you otherwise wouldn't, you step out of the shame and anger, and say, "I can do this. We can do this. We get through things. Remember?"

It courageously surfaces when you decide to take on the great risk of vulnerability for the equally great reward of authenticity. You purchase baby clothes before the doctors are certain the life inside you is "viable" outside your protective womb. You get excited about the great interview and let yourself tell a few friends about its potential. You open your heart to a foster child and come to view that child as your son, before you know if they'll even stay another week. All the while, you remind yourself that allowing yourself to move forward doesn't diminish or increase your sorrow if things don't go as planned.

It is not some "name it, claim it" doctrine that guarantees great outcomes if you ask right or act like they are coming your way. Nor is it willful ignorance of the facts, or a belief that you'll beat the odds this time (because, trust me, I have a tendency to lose even when the odds are in my favor). In fact, it doesn't impact the outcome at all.

Radical love is knowing everything you can know, leaving room for everything you don't know yet and may never learn, and choosing to be vulnerable enough to love wholeheartedly anyhow.

<3 <3 <3 Happy Valentine's Day