Friday, July 10, 2015

Present

It starts the same as every other time:  biting his fingers. Soon Baby Bee is shaking, screaming and flapping—all the usual things associated with a meltdown. I can handle all this.  Staying calm during trying times is my specialty for whatever reason.
 

Thursday, June 11, 2015

"No Thank You!"


Recently I needed to stop by my office at work to pick something up and I had to take Baby Bee along. He was more than reluctant to go because of "the people" there. He came up with a number of alternate plans (he could stay home, he could go to his caregiver's house, he could wait in the car) but the reality was he had no other choice. He was paralyzed with fear. So rather than dragging him against his will, I did what all parents do--I bargained with him. 

Tuesday, May 19, 2015

Lazy Mama, Crazy Mama

"I'm just a lazy mama! I don't over-think it. I don't really plan anything. I just go with the flow and don't worry about it."

You mention this in response to almost everything I say about Baby Bee. About how we "do life."

I know you don't mean anything when you say it.

Pre-Season (Kale Chip) Harvest


I grow kale everywhere. Outside in the garden. Outside in the front garden. In the greenhouse (read: ugly hoop house in the front of our yard.) Inside to get a jump on kale starts when the greenhouse is full. It's pretty much an insatiable love for kale chips.

Er.

Kale.
5# of kale. Phase 1: Harvest the kale from the plants. Go for the outermost leaves
and use scissors for easy leaf cutting.

Adventures with Literal Baby #5


A sweet cousin of Baby Bee's gave him some of her old books, including a fun book about 10 Little Monkeys Jumping on the bed. Pretty much a guaranteed hit.

Yep, that's right. A hit.

Let me back up.

Saturday, May 9, 2015

Restoring the land, making space

The goats cleared out almost all the blackberries from their paddock and we are looking at fencing off a second area that is overrun in salmon and blackberries as well.

Of course as they eat away the foliage we get the pleasure of uncovering more yard decor. I haven't figured out just how people dump things on any land--let alone their own. Instead of feeling ownership over our property (well, let's be honest our mortgage company own most of it anyhow), I mostly feel responsibility. Like I should leave it no worse than I receive it--preferably better.  I want to nurture it so it continues to give back to me and anyone else who ends up here. 

Sometimes things look so neat and tidy until I pull back some of the ground cover and then WHAM! 

Thursday, May 7, 2015

Dual purpose

Lula Mae, Chloe and December had a male visitor last month in hopes of bringing goat babies into the world early this fall. Davinci came and left, but hopefully he left a little of his genetic material behind to become his legacy.

Lula (see later in this post to see how much December looks like her!)

Tuesday, May 5, 2015

Adventures with Literal Baby: 4

During in-home therapy today

Kinder Love Bee's photo.

Therapist:
 Ring, Ring.

*no response*

Therapist:
"Babybee the phone is ringing. Pick it up" 

Tuesday, April 28, 2015

Adventures with Literal Baby: 3


*During the 3am to 9am awake shift with Mr.Bee*

Babybee:
 "Papa, don't close eyes"
 
Mr.Bee:
 "I won't. I'm awake with you"
 
*a few seconds later*

Babybee:
"Papa don't close eyes!"
 
Mr.Bee:
 "I didn't, little buddy."

Babybee:
"yes. Papa blinked. No more blinking"
 
Mr.Bee:
"uhhhh...."
 
*Babybee proceeds to scream every time Mr.Bee blinks*


Lesson Learned: provide a caveat for autonomic nervous system functioning next time you agree to anything.

Thursday, April 23, 2015

Our Magic "Hate" Ball

According to Mr. Bee, Babybee has transformed into a "magic hate ball".

Ask him any question to hear his infinite toddler wisdom in 9 succinct answers:

I don't. ...
No.
Never.
Don't look at me
Not anymore.
Go away.
Nononono.
I can't.
Leave.


(source: http://www.magic8ball.org/)

Thursday, April 9, 2015

Baby Memorization Trick: 2

Recitations of lengthy passages from Fox in Socks.

Favorite lines at the moment:

"I can't do it, Mr. Fox, sir...
I'm so sorry, Mr. Knox, sir
Here's an easy game to play
Here's an easy thing to say"


Stop by anytime for a performance. Shows start approximately every hour, with extra performances around any transition (sleep, car rides, waiting for food, etc).

Wednesday, April 1, 2015

Adventures with Literal Baby: 2


Me:
"Wow. Check out this SUNLIGHT!"

Babybee:
"No. Don't like. Turn off."

 Me:
"The sun is a star. No one can turn it on or off."

Babybee:
Yes. Sun. Light. Turn off light.

Wednesday, March 25, 2015

It's Not Your Fault

Come close and listen. Stop thinking about the grocery list and the phone calls you didn't make, and everything else that is on your mind right now. This is important.

I have a secret to tell you.

It's not your fault. 

That's right. 

It's not your fault. 

Friday, March 20, 2015

Latest Baby Memorization Trick


Knowing all the names of the characters in Guess Who.


(and having to say "goodnight" to every.single.one. every.single.time he goes to sleep.)

Monday, March 16, 2015

Catching Up: Llama, Llama who's your Mama?

"Ama, Ama!"

It was several months ago, and Baby Bee was reaching toward me, nearly shrieking with delight. I reflected his enthusiasm, adding a helping of my own excitement.

"That's right Baby Bee, I'm MAMA!" I  pointed at myself, expanding on his gesture. "Mama!"

You wait for this moment as a parent. You wait and hope and when it doesn't come you are grateful for the other things--like words or communication at all. You learn that kids on the spectrum or with language delays often have some unusual first words. He'd mastered GOAT and DATE as in, "Let's go on a date" or "What's the date today?" But I was still waiting to hear him to refer to me as anything besides "milk." Adding Mama as his fourth word felt exhilarating.  

"Ahhhh-ma!"

"That's right, Mama!"

Baby Bee was no longer delighted. His face scrunched, preparing for his hallmark scream of frustration. He reached toward me again emphasizing the first syllable. "ahhhhh-ma."

He was still reaching so I figured he wanted picked up. 

He didn't. 

(I have the bite marks to prove it.)

I heard a noise outside and reflectively glanced over my shoulder toward the window. In our house, we hear noises, talk about noises, and search out their source. Then we talk about them some more.

But I didn't make it past a first glance. Instead, something on the window sill caught my eye.


Llama, llama who's your Mama?

Yep. That's right.

 A llama.*








*Technically this IS an alpaca. We know this. But somehow we got into a habit of calling it a llama and we just couldn't stop.



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. 

Saturday, March 14, 2015

Adventures with Literal Baby: 1

Me, while giving baby hand wipes after eating:
"Alright now I'm going to take your hand..."

 Babybee, grabbing his hand with the other and pulling back:
"Nooooooo. No take!!"



Saturday, February 7, 2015

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.”

Tuesday, February 3, 2015

Milestones: The Development of Inappropriate Comments From Strangers

Milestones are a funny thing for babies. Well, for people in general I guess.

It's no secret how a child grows. Everyone knows the sequence of development, give or take a few months. People get excited about the achievement of each new ability. Parents track milestones in baby books.  Strangers in the grocery store ask "how old?" and follow it up with a related question or comment about the age-appropriate milestone. Even kids want to know what that other, younger kid in the corner can do.

When you have a child with a developmental delay or disability, however, milestones feel different. They're a blend of happiness if your child meets them (even months or years past their "expected" arrival) and a strange conglomeration of sadness, hope, and mourning, with a hefty dose of "he'll-get-there-when-and-if-he-gets-there,-and-I-don't-really-care-if he-gets-there-anyhow." 

Instead, peoples' reactions to your child's development/behavior becomes the interesting progression to observe.
 
It starts off innocently enough. The lady in front of you in line, the librarian who you're pretty sure does story time once a week, your aunt you never see, a friend whose baby is two years ahead of yours...they all want to know what's happening in your baby's life and they innocently assume that your child is a train on the same set of tracks as all the other kids they've known.

"Oh, 3 months old. What a cutie. He must have the best smile when his daddy walks in the door!"
"He's probably rolling over and almost sitting up by now. How exciting!"
"I'm sure he is just crawling everywhere! Hope you've baby proofed. My niece was into EVERYTHING once she started crawling around." 
  
Slowly, the curiosity switches to a gentle assessment of the situation when their innocent assumption proves wrong:
 "Really, he isn't trying to "talk"? My little one was babbling ALL. THE. TIME. when he was that age. Especially when we'd go out somewhere."
  
"He is pointing though, right? That's such a fun stage."
Then the judgment and blame begins to creep in:
"Well, I'm sure he at least says 'Mom'....No? Well, you talk to him so much I guess he doesn't have a chance to get a word in. You do it all for him."
"Hey there, that kid's almost as big as you are! You sure you have to carry him? He can walk can't he?"
"No shoes? I guess he doesn't need any if you're just going to keep him on your back all the time in that contraption [baby carrier]"
"When my babies were little, I put up a baby gate with really sturdy wood posts so they could pull up on it. You know, I think all my kids were able to pull up by 7 months and they were all walking by 10 or 11 months. I'm sure that gate is what helped them learn. Have you tried a wooden gate yet?"
The conversation then draws to a close with an oddly dismissive set of reassurances.

"Well, I am sure he'll learn to [insert unmet milestone here] any day now."
" I know you said the doctors don't think he'll ever be able to do it, but I know God will work you a miracle."
"He'll grow out of it. Don't worry."
"My friend has a friend with a child with the same diagnosis and she went on this special diet and now she's cured. I'll have her give you a call. Everything will be fine."
"He's just a boy. All boys take time to grow up."
I'd like to believe that the next development in this conversation is one of genuine support. An apology for making assumptions, judging, and minimizing the reality of your family's daily like and future. A reaching out for a true understanding of our unique situation. For some people in our lives (the best ones!) this is the next milestone. It is wonderful and I don't mind the process that it took to arrive.  For most people, however, it's not the case--short on time, lack of opportunity, or, most likely, I don't always want to be the one putting on my advocacy/educator hat. Maybe next time this happens, I'll give them the link to this blog post, and let them know that they might want to do a little more reading on appropriate development and milestones--for themselves. :)

Wednesday, January 21, 2015

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!)