Couch to Five Acres

Present

2015-07-10T12:40:00.002-07:00

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.

I am doing my best to intervene without escalating. It’s a tricky balance but we always manage it, even if we often ride the line. The meltdowns have become so commonplace that I sometimes go into autopilot mode and let my mind wander a little to our early days when we knew Baby Bee had some challenges but were uncertain of their origin (ASD). Today, I recall the shocked look on our occupational therapist’s face the first time we told her that our then-8 month-old would try to bite his stomach when he got upset but his poor motor planning and weak core usually subverted his efforts. We thought it was almost funny, in the embarrassed, worried sort of way that some parents in denial do. He wasn’t actually hurting himself so he was probably fine, right?

Baby Bee's finger biting turns into tearing at the insides of his cheeks which gives way to digging his nails into his legs and scratching his body. He’s flailing now, pounding his fists on the ground, trying so hard to be okay. Suddenly the screams are so loud I can’t think. My intervening touch has triggered him further, pushed him over the edge. I’m not on autopilot anymore. I am sitting on the floor, willing my mind to stay shut. Panic is banging on the door, worries are trying to break the windows, and dread so deep it’s transformed into nausea is seeping in all the cracks. Because it’s happening. The very thing, which we’d always said wouldn’t happen was happening. He’s crossed the line. He gathers momentum and slams his 99^th percentile head on our hard wood floor.

Again.

And again.

Hard.

I am frozen in time, stunned and flooded with emotion.

I wish he would throw a toy across the room the way I’ve seen other frustrated toddlers work through their emotions.

I wish he would grab the vase on the shelf behind him and smash it to pieces, the way raging characters on television are so apt to do.

I wish he would hurt me instead.

I wish anything besides this.

A cry escapes me and I’m pleading with him as I scoop him into my arms. He manages to slam his head on every hard surface we pass, using my body as substitute when nothing else is in reach.

“Baby Bee. Hurt. Head.”

It’s not a statement of fact, despite the bruises I already see forming on his tiny body. He says it in the same matter-of-fact yet desperate way he demands to “eat food” or be “all done.” It’s a spoken urge, an explanation of what he’s trying to do, narration of intent. My sweet son has turned agonizingly inward in his dysregulation.

I will my mind to be still, to find the calm space I’m so adept at occupying in trying moments. I bribe myself with every soothing idea I can think of even though I know none of them are true: that this is a one-time event; that it’s a phase; or that all kids do this. None of it works. His eyes beg me to get him out of his body. The best I can do is safely place him in the padded pack and play. I dim the lights, and step away knowing that even the intensity of my presence is too much for him right now.

And then, I call my Dad and cry. My Dad wants to fix it. He’s talking about medication (“For me or for the baby?”, I ask, only half-joking), he’s asking about behavioral therapy, grasping at anything to help me solve the current crisis.

“Thanks Dad. That’s not what I need right now,” I’m surprised to hear myself say the words. “I just need you to listen. To hear how hard this is.”

Which he does.

He quietly acknowledges my helplessness, my fear and desperation in a beautiful way that means more than all the words or fatherly advice in the world. In a way that reminds me how fortunate I am to have this loving connection in my life. In a way that reminds me what it means to be someone’s child, suffering but secure in the comfort of a parent.

I hang up the phone and take a deep breath. I find the strength to stay grounded despite the heartache inside. Slowly, I crawl into the bedroom and sit nearby, mostly hidden but still available. When Baby Bee is ready, I take him into my arms and rock him gently. I let my tears fall on his own soaked cheeks, silently vowing to stay present for as long as he needs—now or in 30 years--even if there isn't a single thing I can do otherwise to make him feel better. “I’m here, Baby Bee; I know this is hard,” I say aloud, knowing now that staying present for the pain of your child is the hardest work required of all parents—ASD or otherwise.

"No Thank You!"

2015-06-11T21:27:00.000-07:00

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.

We are always searching for ways to help him interact with others in a positive way. We want to encourage him to push himself without pushing him over that cliff of no return. We want him to feel in control of the situation so he doesn't return with a laundry list of things that happened TO him or AT him or ON him.

During my bargaining attempts, I learned a little more about "the people." I learned Baby Bee was afraid they would talk to him and that he didn't feel like he could say anything to them at all, much less say "no thank you" to their socialization attempts.

We finally came up with the idea that he could use a physical sign to show people what he needed, so he wouldn't have to say a word. He agreed to give it a try and we spent 10 minutes hashing out language he felt was acceptable. The kid has strong feelings. About everything.

"No, thank you. I don't feel like talking right now. Please give me some space."

We role played with stuffed animals invading his space and trying to talk with him. He held his sign tentatively and soon with pride. I heard him whisper, "no thank you" to the big brown dancing bear annoyingly close in his face. And then, we got in the car and went to the office.

Since that day we've continued to practice using the sign as part of our going out routine. My close friend even made us an upgraded set of signs fit to Baby Bee's specifications (all red, one igloo shaped, one diamond shaped, one oval shaped). I might remind him of the tools we have available, but he chooses when to use it. Sometimes that's when he's sitting in the front yard and a jogger is running past--unaware he even exists. Other times it's in the grocery store, holding it firmly for all to see, a sort of warning to anyone who might approach. A few times he's held it out and looked the other way when an individual insists on talking to him before he goes into shutdown/scream mode. People don't always take it seriously but I figure that's why I'm there. (I promise I'm always polite!)

My favorite time he uses his sign is when after a long time of holding it as his shield, he lowers it or even sets it down, and says, "Hi!" to an unsuspecting person who has caught his fancy. Repeat mode sets in as he stammers the same phrase about the random "object of the day" he is holding and I know he's connecting with someone on his own terms, in a way he will feel good about tomorrow.

Lazy Mama, Crazy Mama

2015-05-19T23:20:00.001-07:00

"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.
I know you probably don't even realize you are saying it. I know it's because you are coming from a place of privilege, a place of not "needing to know." In that sense, I am glad for you that you have not known this hardship (though I imagine you have other struggles, just like the rest of us).

When I hear someone proudly tout their parenting as "lazy" in contrast to my own efforts, I wonder what they are implying about my parenting. I wonder if the opposite of "lazy mama" is a "crazy mama" in your mind and if you think I've crossed the line. This isn't a case of "helicopter" vs. "free-range' or anything so trendy as that. I want to know that, even though our parenting approaches are different, you understand that putting this effort into supporting my child doesn't make me a crazy mama, and that I never had the opportunity to be a "lazy mama."

It's not that I judge your philosophy. I wanted to do what you do. To feed Baby Bee at the family table and let him self-regulate his food instead of structuring our meal around visual cues and verbal reminders to keep him calm. To take him to a restaurant without having to leave within moments of our food arriving.

high chair, bib, wait for food, use signs/words, wipe face, wash dishes

To just listen to my baby's cues for sleep and cuddle him close without the need for melatonin, swaddle, second swaddle, white noise and the infant swing--and find a way to do this all while nursing without actually touching his skin. Or even pat him back down to sleep when he wakes for a 3 hour scream-a-thon in the night instead of going through packs of flashcards in attempt to calm him down only to have it start all over again when he realizes one is missing.

A week's worth of batteries for the infant swing due to 25# toddler

To sporadically gather at the park for an afternoon play date without worry about whether the grass was just cut, if there will be other kids there and if they'll want to interact, and if I will have the emotional energy to survive the "fallout" that will inevitably come.

"No, thank you. i don't feel like talking right now. Please give me some space"

I want all that too. I wish there were another way.

But right now, we don't have it.

I hope you can understand this and pause before those words come tumbling out next time. I know I shouldn't care what you think either way. But I do. Because we are all in this together. And moreover, I need your support.

Pre-Season (Kale Chip) Harvest

2015-05-19T22:32:00.004-07:00

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.

In any case, I grow as much as I can and consume even more. This weekend I harvested three plants from the greenhouse that got us through the winter and gave us an early start to spring. I forgot to vent the greenhouse before a bout of really hot weather so most of the plants were starting to bolt. Besides, technically we built the greenhouse to grow things other than kale chip ingredients. I reluctantly dug them out and saved every precious leaf. Now we have tomatoes, peppers, cucumbers, collards, chard, zucchini and well, a little more kale in there.

5# of kale. Phase 2: Soak in cold water, gently lift out (no swishing!) and dip into "clean" water
before putting through the salad spinner

5 pounds of kale might not sound like much, but I assure you it is, even to an enthusiast like myself. You'll know once you start processing it for storage.

5# of kale. Phase 3: Poke several holes in large ziploc baggies with a dry paper towel. Gently fill and put in fridge. Immediately make 3 kale dishes so you don't have to fit any more gallon ziplocs in your fridge.

My arms are seriously sore from using the salad spinner so much! Sometimes I feel like I have time to grow our food, process our food, or cook our food, or eat our food, but not all of them all at once.

5# kale. Phase 4: Eat every last bit of it! Baby Bee scraping
the last few bites of "cheezy" kale chips from the dehydrator tray

I doubt that we'll ever feel we have enough time to do it all leisurely. Mother Nature never allows for that, let alone balancing work and family and our modern society. But it's easy to forget your labor once you get to take those first few bites--whether it is the middle of winter and your pulling out your preserves or kale chips straight from the dehydrator. It also helps when someone else likes the end-results as much as you do.

Adventures with Literal Baby #5

2015-05-19T21:49:00.001-07:00

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.

Let's start by saying it doesn't help that I call him "Little Monkey" as a nickname. We asked our therapists to just count the monkeys and not read the words of the book aloud knowing what might happen. And we asked our caregivers to do the same--or at least we thought we did. Turns out we forgot to pass the memo to one. So Baby Bee was soon "jumping" (read: stumbling) on the bed narrating his every action, "Baby Bee. Monkey! Jump! On Bed!" followed by a very determined, "Fall off. Hurt head!"

When you've dealt with real self-injurious behavior in a toddler before, this is almost cute. Except the part where he is upset because his pain tolerance is so high and he didn't actually feel hurt in his head despite his best attempts. Still, we let it slide because the counting of the monkeys is oh-so-fun even if the book poses a more-than-average risk of real injury. C'est la vie, right?

After we've read a book a few times and the story line becomes rote for Baby Bee, he begins a forensic examination of the pictures. We've learned that often what he sees is different than the words describing the picture. In the case of those poor Little Monkeys, Baby Bee has solved the mystery. What mystery you ask? That cover up story about how those Little Monkeys got hurt. Everyone knows Little Monkeys don't get hurt by falling out of bed (recall: theory previously tested).

So who did it?

Mama. She's been hitting them all along.

I was stunned at this reasoning for why the Little Monkeys were crying. We are a peaceful family. Pretty much pacifists. How could this be?

So I did that veiled "Why-on-earth-would-you-think-that?" line of questioning that went something like, "Oh really? Hmm. That's interesting. Tell me more about that. What did you see or hear or feel that made you think that?"

And then he showed me the proof. Photographic evidence.

Admittedly, Mama does look like she could be hitting Little Monkey. I tried to explain that instead of hitting she was trying to comfort Little Monkey. This further confused matters and lead Baby Bee to the conclusion that hitting was a form of comfort.

So tonight I sneaked the book off the shelf and posted it on our local Buy Nothing Group. I sort of feel bad for gifting another parent a book filled with self-harm and family violence. So far folks only seem excited about how much their kiddos love the song and can't wait to have it as a story. I guess they haven't seen the pictures yet.

Restoring the land, making space

2015-05-09T21:23:00.001-07:00

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!

What's that pile doing over there? Why did someone dump those right here where some unsuspecting person might fall into it and get hurt? Shouldn't the owner just have dealt with them in the first place instead of letting them decay and degrade their surroundings? Oh wait, are we talking about my own life or the junk in the yard?

It's all the same to me now, as I find I can't make space for beautiful things to thrive in one domain without making space in the other. As we restore the land, we restore ourselves.

Dual purpose

2015-05-07T19:58:00.001-07:00

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!)

Kinder goats are great dual purpose breeds--milk and meat--though ours are a little on the "dairy" side. We brought in an outside male to try and correct for this "deficiency". Since we use our goats as all purpose homestead animals--meat, milk, land restoration, and quality entertainment--we want to make sure each generation is better than the next for our family.

Chloe, the stubborn one, who regularly fakes choking when upset

Sweet, sweet December. (actually she is as much "goat" as the others, just more polite about it)

We are not licensed to sell meat/dairy and we probably never will sell our products. It just isn't practical for a homestead (vs a farm). We have folks do their own processing/goat share if we barter or want to share more than a meal of milk or meat. That's good enough for us right now (and follows the laws!). We have enough meat and milk to regularly consume and are not dependent on stores for these products. Our friends make us soap and lotion in exchange for milk and our neighbors teach us how to tan the hides. In future we will add a buck of our own perhaps to make us truly self-sufficient (but ohmygoodness they smell).

When we do eat the meat or drink the milk, Babybee wants to know which goat (or other animal) it came from. You may have heard that saying "don't name it if you're going to eat it". Well, we've sort of evolved into an opposite approach. We answer his question. "We knew this animal, we loved this animal, and we are grateful to have this animal's life to feed our family. This was Desi."

And then he holds up his little fork and says "Desi. Meat for family" and we eat.

How does this work? You could never do it this way? I didn't originally think I would do it like this either.

But it's ideal. It keeps us conscious about our meat consumption. It keeps us honest with our little guy who asks big questions. It keeps us grateful for the lives we raise and the lives we take.

We wouldn't have it any other way.

Adventures with Literal Baby: 4

2015-05-05T20:54:00.000-07:00

During in-home therapy today

Therapist:
Ring, Ring.

*no response*

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

*Babybee picks up the phone from the floor, then sets it down and goes back to what he was doing.*

Therapist:
"uh, I meant you should say 'hello'"

Babybee, flatly, without looking up from his own game:
"hello."

Adventures with Literal Baby: 3

2015-04-28T20:50:00.000-07:00

*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.

Our Magic "Hate" Ball

2015-04-23T20:45:00.000-07:00

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/)

Baby Memorization Trick: 2

2015-04-09T20:37:00.000-07:00

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).

Adventures with Literal Baby: 2

2015-04-01T20:34:00.000-07:00

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.

It's Not Your Fault

2015-03-25T20:41:00.001-07:00

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.

I notice your head nodding but your brain is flooding with "logical" arguments about why this is your fault. Things you've told yourself when you're angry or frustrated and don't know what else to do. Things others--in laws, partners, friends, and even doctors--have hurled your way in a desperate attempt to make sense out of the unexplainable. We all feel good when we can pinpoint the "problem" and place blame. Temporarily.

It's not your fault.

Your parenting didn't cause this. You weren't too lax or too firm or too attached. It's not because you fed from a bottle or went back to work. Or because you breastfed on demand through toddlerhood. Children with special needs are born to all families of all parenting styles. We might learn ways of shifting our parenting to provide more support based on our child's needs, but that doesn't mean your parenting caused this. It didn't.

It's not your fault.

This has nothing to do with how much effort and love you have (or haven't) poured into your child. Effort may lead to finding new supports. Love may make tough situations easier to get through. Special needs show up regardless.

It's not your fault.

Your genetics aren't your fault either. Last I checked the make-up of your own DNA is not within your control. You can't help whether your hair is naturally curly or the color of your eyes or anything else about your makeup. You didn't choose your genes. You didn't choose which genes your child would inherit.

It's not your fault.

Your family planning choices didn't cause this either. Maybe you chose to bring a child into this world that you knew would have special needs, or at l least a high chance. Or maybe you chose to adopt a child with special needs. I hear you. You made both ordinary and brave choices about your family. You still didn't create those special needs.

It's not your fault.

It's not your fault that sometimes life is really hard, that you have so much on your plate. That you spend your days at the doctor's office, your nights trying to soothe, and your afternoons in therapy (both for your child and yourself. And maybe your marriage too). That you struggle to juggle your own needs with your child's needs, your partner's needs, and your friends' needs. There's more need than a person can reasonably meet and much of that need will go unmet.

It's not your fault.

It's not your fault that sometimes you've wished for another life, while knowing you could never trade the one you have. It's normal to wonder how things might have been different and sometimes wish they could have been.

It's not your fault.

It's not your fault for desperately hoping for the next medical advancement that might give insight into your child one day, then losing all hope and sight of any progress the next day. Keeping a balanced perspective is hard. It's a roller coaster ride for most people.

It's not your fault.

It's not your fault for being scared about the future. For wondering what tomorrow will look like and what 20 years from now will or won't mean. No one really knows what will happen to their child, but it is easier to worry when your child is following a road map with very few markings.

It's not your fault.

It's not your fault that it may have taken you months or years to fall in love with your child, and that you might never love their special needs. It's okay to let love grow slowly and unfold in its own way, just as your child is doing.

It's not your fault.

It's not your fault that despite all the overwhelming evidence to the contrary, you still wonder if this is your fault. If somehow, you are the exception to the rule, and you caused this. Everyone feels that way. You didn't.

It's not your fault.

Latest Baby Memorization Trick

2015-03-20T20:23:00.000-07:00

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.)

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

2015-03-16T15:17:00.001-07:00

"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

2015-03-16T14:13:00.001-07:00

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.

I imagine this situation happens to most of us--special needs or neuro-typical, parents or otherwise--at some point or another. You pour everything you have into the situation--your prayers, your intellect, your medical model, your healing crystals and your psychotherapy--in hopes that something might work. And maybe, for some of the lucky few, it does. Congratulations.

The truth for the rest of us, and for our family, is that the status quo isn't working. All the love and homemade (organic, gluten-free/dairy-free/refined-sugar-free) cupcakes aren't enough to change a differently structured brain.

(I wish they were.)

At first I thought this meant we had failed. That somehow we had chosen the wrong values, the wrong parenting approach, or that we just hadn't tried hard enough on our own.

For the record, that's not the case.

Sometimes your kid needs therapy. Therapy you never intended to pursue. (Reminder: you never intended to have a child on the Spectrum either.) Sometimes living out your family values means being flexible and sensitive to the needs of the individual, and considering things you normally wouldn't consider because, well, this isn't about YOU. Sometimes it's your greatest chance to practice your own deep breathing and say, "Of course I'll do it, if it helps."

In some circles, ABA has a bad reputation. We'd heard rumors of ABA turning kids into reward driven machines craving approval at every turn. We'd listened to stories of therapists that are so focused on outcome that they'd demand it regardless of cost to the child. We called tons of providers who have essentially the same programs for each kid, and couldn't see the diversity of needs on the spectrum. We interviewed practices who forgot to ask what our goals as a family were and focused only on the diagnostic report. We tried one provider who continually "moved the carrot" so Baby Bee was always working but she was never following through on her end of the bargain. Another therapist regularly asked Baby Bee questions about his preferences then corrected him and followed through with her own agenda regardless of his response. (He still says "yes", even when he means "no"--after only 8 hours of therapy with her.) These are all valid concerns. We just couldn't believe that these were the components that made ABA successful.

So we kept searching. Eventually, we found an ABA practice that we liked and we did it. We started that terrible-horrible-no-good-very-bad ABA thing a few months ago.

And you know, what?

It's pretty great.

Our home therapist spent more than a month just playing with Baby Bee in our living room so he and the overseeing psychologist could develop appropriate programs to fit his needs. Moreover, so he and Baby Bee could establish a good relationship.

Because that is what therapy is about.

(Yes, even ABA).

It's founded on a solid relationship with someone who has tools that might help you grow. Someone you can trust when they say, "Today we are going to try something new" or "I know this is hard. Keep trying!" It's possible that your child (who *only* plays with blue balls) will actually look at, and touch, the orange ball when the therapist says "Did you notice that the blue ball and the orange ball are identical except for the color? Look they are both squishy, small and round," even though you swear you've tried that same trick a thousand times before.

More than anything else, we want to raise is a child who knows what fully accepting love is. Who has experienced it, who can practice it, who can appreciate it wherever he spots it. Nothing about throwing a ball (that's not blue), or practicing calming down after having been asked to put one more block on the tower, undermines who we are as a family or the type of person we hope Baby Bee will become.

In fact, I think ABA will help us get there.

Adventures with Literal Baby: 1

2015-03-14T20:18:00.000-07:00

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!!"

You're A Good Mama

2015-02-07T20:02:00.000-08:00

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.”

Wordless Wednesday: Dreaming of Spring

2015-02-04T07:00:00.000-08:00

Photo credit: Jennifer Tudor

Milestones: The Development of Inappropriate Comments From Strangers

2015-02-03T21:22:00.000-08:00

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. :)

One to use the knife

2015-01-21T23:11:00.003-08:00

"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

2015-01-21T22:22:00.000-08:00

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...

2014-12-08T15:00:00.005-08:00

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.

Making Use, Making Do, Making things Right

2014-08-19T20:26:00.001-07:00

You may remember I started this journey with thick rubber gloves, tongs and a package of Trader Joe's frozen chicken breast.

Well, we're not in Kansas any more Toto.

This spring we raised our own meat chickens. Fast growing things that required careful monitoring to ensure proper health. The garage flooded during some area wide flooding we had, and we panicked to get the little babes dry and to higher ground. We raised 30+ birds for ourselves and a few friends, marveled at how fast they grew and butchered then by 8 weeks.

Last month, Mr. Bee butchered our first goat. (Not to worry, it wasn't Lula Mae or anyone you know. Well not too well anyhow. :/)

Desi was one of Lula Mae's babies from our first kidding. She was always destined as meat or selling but we gave her a name and treated her like the others, nevertheless.

We also put one of the beautiful Pekins down. She suffered what my childhood best friend (turned Vet) surmises was a stroke common in older birds of this variety.

With the meat birds it's almost easy. "Meat" is even in their name! I've still never done the actual slaughter but it's easy to get detached. You see them and think "wow this will feed us for many months. I wonder if those runts will catch up in size." (In the process if the objectification of meat, it's easy to understand the objectification of women.)

With the goats, it's a little harder. You feel weird taking the life of an animal who trusts you, who you watched enter the world, who is cognizant of its status as prey in the natural world. You tell yourself that it's okay because she's not a pet, she never was a pet, even though that's not entirely true.

Then there is your pet. Someone you love deeply and powerfully. And it's so hard that you have the neighbors come over and take her life as part of a ceremony where you cry and they sing and you're pain feels so deep you'll never recover from it. Even though you will, and you do.

We didn't intend to lose this duck so we had to make do and navigate the best way to honor her. E It seemed best to pluck the soft down from her body and let her flesh stay whole. We composted her body and look forward to letting her continue to nourish our lives in another season. I took the down, and combined it with other down I'd saved to fill Baby Bee's special blanket I finished for his 1 year birthday gift.

I have to make sense of if all. If I'm going to eat meat, I have to come to terms with the fact that life is life whether I give it a name, call it my own or never distinguish it from its peers. It's all the same. It's my relationship to the animal in each of those scenarios is different.

These experiences have compelled us to examine our practices: is it better to take one life that provides for several? Or take more lives from animals that feel less "evolved"? And how do we get the most put of each life? What do we currently consider waste and how can we put it to use? Can we buy meat at this time from, say, a grocery store,-or do we need to "know" the animals before we consume them?

We've come a long ways on this journey but we are no where bear arrived. I'm curious to see where we end up in our thinking.

Preserving the Harvest

2014-08-19T16:16:00.001-07:00

Mr. Bee and I are focused on expanding our food storage right now. We've consulted with neighbors, read books (like Indeoendence Day) and even found a second food dehydrator from someone down the road.

There is something uniquely satisfying about taking something that should only last a moment, or a day, or a week and preserving it for a later time.

Although my memory is less than spectacular on its own, the moment I have something to hang a memory on it becomes nearly photographic. It becomes preserved almost indefinitely.

Did you hear that Radio Lab episode last week? Yeah me too. And although I can't tell you what it was even about, if you replay any segment of it, I will suddenly be able to recall every detail. I will know exactly where I was during that portion of the show. I'll be transported back instantly. Even if it was four years ago. I'll remember word for word what Jad will say next, the color of my shirt if I looked down, the way Mr. Bee's face looked as he processed the information and all the colors of the cars around me if I was driving. It's like reliving the scene. (And thus, I find it very disorienting to ever listen to the same thing twice!)

As we can our shiro plum and basil jam to top winter toast, make applesauce for the spring, or blanch our greens to toss in soup on a soup cooking on the fire on an upcoming snowy day, I hope we are persevering the memories alongside. I hope we remember the joy of watching our first chard stems poke up through the ground in our newly built hoop house--long before anyone else had even purchased their seeds--as we open a jar of pickled rainbow stems. I hope we remember laughing and picking Asian pears with Baby Bee on my back as we munch on dried pear rings and think how lucky we are to call them a "snack". I hope when we pop the cap off our apple cider at thanksgiving, we remember how our frost attempt exploded all over the laundry room leaving sticky residue and a yeasty smell to linger for days.

I hope we remember to harvest and preserve the good days and that the memories are just as fresh, even after the seasons change.