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.

 

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.

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! 

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. 

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. 

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. :)

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?

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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.