A sassy, crafty mama bird from Los Angeles
raising a very sweet little girl with Autism
and a new baby boy in the Midwest... and other stuff, too.

Saturday, October 25, 2014

The Series Finale

I started writing this blog at the end of 2008. I thought I'd share a bit about what it was like for a girl from Los Angeles to live in the Midwest. It was fun to get to post pictures of snow, wildlife, and changing leaves for my friends and family back home. Because my life was so dominated with Autism and all things special needs, that seemed to be a big focus of my writing. I fell into a bit of a niche. That turned out to be a good thing. It became cathartic to get to express my feelings, my fears, my concerns and my truths. My posts started educating friends and family about what my life was like and what it meant, for me, to raise a child with Autism. So many friends and acquaintances had no experience with ASD but were willing to listen, read, and learn. My daughter and I were shown a level of compassion and understanding I never expected. I am grateful. 

Most of all, I'm grateful for the amazing people the Autism and disability blogging world has brought into my life. It's always an incredible feeling to hear the words, "You are not alone. Me, too. I get it." There are other parents out there, just like me, unafraid to share their truth with the world. They have become my friends, my family, and my pillars of strength. 

Over the past 6 years, I've shared bits about living away from my home, Autism, therapies, hopes, fears, divorce, love, my domestication, my adventures being mom to Little Bird and J Bird, and just blooming where I've been planted. And of course, all those moments. Thank you for indulging me. 

I've reached a point where I'm ready to simplify. Parts of my life are far too complicated, stressful, and complex. I crave simplicity to balance it out. For me, that means downsizing. Keeping it simple. Getting rid of stuff. Letting go of things weighing me down; things I don't need or are no longer serving a purpose for me. I'm looking for a smaller home, less stuff in drawers and on shelves, less distraction from what's important. The family that Ben and I have created has filled a void in my life and in my heart. With them, I have found a peace I never knew. 

I'm also stepping away a little bit from social media. I'm not perfect. I get so jealous. It's hard to see the other kids celebrating birthdays at parties my girl isn't invited to; camps, dance classes, soccer clubs that wouldn't include her. Even seeing the pictures of kids gathering together for snow day parties. We just never get those invitations. It's a very Isolating life. And I'm only human, having human feelings. I am a work in progress and I can't help my reaction to some of that (and because I have recently become unimpressed with the utter phoniness of most people on social media) I'm stepping back. I want to spend my time filling up my bucket: finding beauty in creating, learning, and just being. I'm looking for more privacy for my family. I've made most photos private and become extra choosey about with whom I share stuff. Yes, I've been criticized before about what I have and have not written about, posted, shared, etc. I've never bowed down to others. Only to myself. I'll still be found working on Birdhouse For Autism and posting on its Facebook page

Maybe this will turn out to be a small hiatus and not a final goodbye. I might come back here now and then and post little or big things. Until then, thank you for being here and sharing my journey with me, whether you've read one post, followed along from the beginning, or found me halfway. Every comment, every like has been encouraging. I am grateful.

Off we go....

Friday, September 26, 2014

This is 37

Tomorrow is my birthday. At 37 years old, I'm now a midwestern mom of two, living in a suburban home surrounded by neighbors who wave to each other and would have no trouble stopping by to borrow a cup of sugar. I have a small garden which produced enough this summer for me to make and freeze food for my baby boy- the same boy for whom I just finished knitting a sweater; a new pair of leg warmers for the girl is the next project.

I sit here on my deck in the sunshine with a cup of decaf (ugh, still nursing a baby who hates caffeine), nestled up against protected wetlands with leaves beginning to change their colors. I look at my tomato and bean plants, not even getting pissed at the chipmunk who ate my basil and cilantro, listening to the whirr of the baby's diaper's in the dryer, smelling the blueberries and bananas I'm roasting him. I just waved goodbye to the short yellow bus which took by beautiful Little Bird to school. I couldn't possibly feel further away from the spoiled, self-absorbed LA/valley girl, like, totally running the rat race. I have a really simple life these days, and I'm always trying to find ways to make it even a little bit more simple.

I have an incredible, supportive, talented, smart, fun and funny life partner that gives me butterflies every time my eyes catch his. I have two fabulous kids who never stop challenging me to be a better person and to stay in the present moment, providing me with laugh-out-loud moments daily and times when I want the clocks to stop ticking. I have healthy parents, who live a life that makes them happy, allowing them to spend time with their grandchildren often despite living two thousand miles away. And I have some friends. Not a lot. Just enough to share in my joys and accomplishments and to support and carry me through the tough times. I've found a great community of parents raising children with disabilities who get it- triumphs and the trials; they are all in it with me. I get to spend my time working on my awesome and rewarding business, finding ways to make life easier for families like mine.

This is thirty seven. I'll celebrate my birthday tomorrow with some yoga, some apple picking out at an orchard that happens to also make incredible cider and fresh donuts, some take-out thai, and maybe an apple crisp with the "fruits of our labor."

Thirty six was pretty amazing. My double chai birthday indeed brought me new life with J Bird. I have some pretty great (really great!!) things planned for 37, too, and I'm very excited about that. My biggest goals for this new year of life are to breathe and continue breathing, to stop taking things so personally (the second of the four agreements), to put on my own oxygen mask first, and to make an effort to get a babysitter at least once a month.

I don't dread getting older. I keep thinking about one of my favorite quotes. It was spoken by Joan of Arc: "I am not afraid. I was born to do this."

One foot in front of the other, leaping into thirty seven.

Friday, September 12, 2014

*This Moment*

{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember. -SouleMama

Friday, September 5, 2014

*This Moment*

{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember. -SouleMama

Tuesday, September 2, 2014

Happy Back To School Day!

Anatomy of the first day photo

The first day of school photo is a must for all parents. All Most Some parents even post them on FB. Not sure if you've noticed this. *sarcasm* I'm staying away from the social network today because it's just too much for me and I just can't. 

Many parents have the kids hold up signs that say their grade level. My friend Lisa made this for all the families whose children aren't really entering grades per se, and are really just going back to school. Yes, Little Bird is technically going to begin third grade but she spends the major majority of her day in the Autism classroom, rarely does she spend time in the third grade classroom. Perhaps her sign should read "first day of 3-5 ASD"? Nah, no sign for us. Getting the shot was tough enough....

Bright thoughts for a successful school year! I think there's a special education proverb that reads:   

"May this school year bring less phone calls home, more access to services, less rotation of staff, more peer interaction, and less shouting at the IEP."

Or something like that. Whatever.

Happy back to school day!

Saturday, August 30, 2014

He Sent Me A Penny

It was two years ago that he died. Two years ago today, actually. Jed was a great friend to me and a great support. Always encouraging me and cheering on the bird from across the miles. Of course I think about him all the time, but since this week marked the anniversary of his death, he's been on my mind a bit more, I guess. Soon after he died, another friend of ours saw him in a dream. I was so jealous. There were times when I'd hoped to see him in dreams; hoped he'd answer some of my questions. For two years, he never showed up. And then it happened. He visited me a few nights ago and we laughed and I got to see him smile, at peace. Finally at peace.

Today I was in the middle of a packed yoga class. Somewhere between one pose or another, I looked down and I saw it. A penny. About a year and a half ago, I started seeing pennies on the ground as signs that people I loved who aren't here anymore are sending me a little message, a little hug, a little wink and a smile. I got chills right away and knew that penny was from Jed. Just a little something to let me know he's still here around me, supporting me.

What in the world was a penny doing on the floor of a yoga room (typically all you bring into a yoga room is your body and a mat)? And what are the chances that my mat would be right there next to this penny? And what are the chances that all this happens today, on the anniversary of Jed's death?

I'm grateful that I was present enough to see the penny and get the message. So, Jed, wherever you may be tonight... back atcha, buddy.

Friday, August 29, 2014

My Daughter Was Diagnosed With Autism (6 years ago)

Six years ago today my daughter was diagnosed with Autism. She was 3 1/2 years old and had been in therapies since she was 8 months old because (presumably) her low tone delayed her gross motor, fine motor, and speech and language skills. Until that day, her only diagnoses were hypotonia and developmental delay. All those therapists that she'd seen over the years were so surprised that I was going to get an Autism evaluation and at every therapy evaluation when they'd say it doesn't look like Autism, I'd ignorantly think to myself, "at least it's not Autism." But, on August 29, 2008 it was. She was diagnosed by one of the leading names in ASD diagnostics. This was it. She has Autism.

So to honor the six years since the diagnosis, here are six things I've learned along the way. This won't be true for ALL people raising kids with Autism, nor will it be true for all autistic people. These are six of MY truths.

1)  "The world is so big and she will find her where she fits." Just as I shared in the Our Story section, I sat with an older woman a few years ago and she said these words to me. I've held on to them, reminding myself that there's a place in this big world for my bird and she will find it. She will find it.

2) There are some pretty cool people here. Early on in Little Bird's life, it seemed like the world was getting smaller and smaller. I wasn't able to socialize or go to the same places as the other families because there were parts of her disability that made it impossible; there were also parts about where I was in my grief journey that made it too painful for me. I found an incredible group of parents just like me all around the country and even world. I am never alone in my feelings and I always have people to turn to. And these people get it. Like, really get it. 

3) This isn't going away. When Little Bird was a baby and I first started seeing signs that she wasn't developing typically, the doctors, therapists, and teachers all lauded Early Intervention as this amazing concept and way of life that would offer the chance of Little Bird outgrowing her symptoms. I remember they all said that if I kept at it, then by kindergarten/age five, she might be indistinguishable from her peers. That's why five was such a huge deal for me. I wrote about it here. Kindergarten came and went. She was most certainly distinguishable from her peers despite years of early intervention programming and countless hours of therapy and thousands upon thousands of dollars spent. The inverse seemed to come true and now as more time passes, the chasm between Little Bird and her peers widens.

4) It's not a death sentence. Yes, it's a lifelong disability and there is no cure, but there is still happiness, fun, and love here. There are ways to try to minimize some symptoms that might hinder a person's ability to enjoy life, feel comfortable, and thrive. Therapies, medications, supplements, etc. It is possible to find happiness whether your child's symptoms improve or not.

5) There are neurotypical peers out there who want- actually want- to be Little Bird's friend. This one I need to keep reminding myself. While it's been more than a year since any play date or birthday invitations have arrived, there are children who approach her with a smile and say hi as she walks through the school halls. 

6) Autism is fluid. Symptoms come and go, flare up and calm down. Just when I think I can't take one more moment of a particular behavior, another pops up to replace that one- sometimes this works in my favor; sometimes it does not. Life with Autism is never boring and always changing. Little Bird's behavior and functioning can be very variable depending on the situation, scene, and her comfort level. I always try to meet her where she is, but presume competence and push push push her to be the best Little Bird she can be.

*This Moment*

{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember. -SouleMama

Sunday, August 24, 2014

We Always Try Again

"Look, Olivia!" she said and fixed her gaze in our direction, "another little girl to play with." Little Olivia looked over and just stared in bewilderment at my Little Bird whose nose was scrunched up and fingers were in pushed so far into her ears that she likely didn't hear me ushering her along. The little girl just stared. Oh, the stares. After all these years, the stares are as sharp in my gut as ever.

It was a pool party. Mostly babies and very young kids. My bird was the oldest. We didn't know anyone but the hosts. The pool was a little too cold for my baby, so I just held him and nursed him and rocked him. Eventually he slept in my arms. It must have been too much of a sensory experience for my girl as she dropped to the ground, silent, fingers in ears, head down and body curled up. Ben and I continued to exchange glances, the kind that contained entire conversations and debates about whether or not to cut and run. We tried to distract her, redirect her.  It was a fruitless effort. I looked around at the other families. They were enjoying their afternoon. And from the outside, it did look like fun. And the sounds! Little ones giggling and the echoes of the pool. Yes, it looked like a good time. It's just not mine. My mission is to find peace with what's mine.

We spent more time in the car traveling to the party than we did there. Sometimes I'm not sure why I bother trying. But of course we will try again. We always try again.

Friday, August 22, 2014

*This Moment*

My baby and my baby brother meeting for the first time 

{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember. -SouleMama

Monday, August 4, 2014

Going On A Berry Hunt

A few weeks ago, we went berry picking. It was a beautiful, but very hot day. We drove about 45 minutes away yet felt a lot further away than that. We made jam and dipping sauce and roasted blueberries for the baby, which he loved! Ben already posted some of our photos on his own blog, so go look at those at maybe some of the other great pics he's snapped. Here are a few more of a great family trip to the orchard.

Farmer Benji

Nursing in the fields

We picked so many raspberries and blueberries! 

Little Bird in the orchard

So much excitement in the orchard, J Bird fell asleep on the hayride.

Bonus: roasted banana and blueberry puree recipe (thank you to @jharrison34 for passing it along to me)

Friday, August 1, 2014

*This Moment*

Photo credit to Sophia H. Little Bird's inclusion counselor at camp

{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember. -SouleMama

Friday, July 25, 2014

*This Moment*

{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember. -SouleMama

Thursday, July 24, 2014

Growing Pains

J Bird is just about the age that Little Bird was at the first sign. Shortly after her six month check-up, I was referred to a neurologist who could only look and say yes, something was amiss. And so began the testing for brain lesions, metabolic disorders, and whatever else  would cause such low tone, etc. It was just low tone, right?- no biggie. So she wouldn't be an athlete. I could handle that.

I remember asking things like "Will she live with me forever? Will she go to college? Will she get married? Will she have a family of her own? Will she be normal?"
Seems crazy looking back and asking those things of someone back then. There was really no way to tell. So many factors up in the air: diagnosis, time, advances in medicine and therapies, opportunities granted to her, etc. I wanted to have some reassurance. I wanted the crystal ball. I wanted to know that everything was going to be okay.

I took her to see so many doctors. I'd ask the same things every time. 
"Will she live with me forever? Will she be normal?"

Of course now I still worry for her future. But I'm no longer wondering if she will get married and have her own family. I stopped asking if she'll ever be "normal." I know the answers. And that's okay. I don't wonder if she'll go to college. According to the director of special education in her school district, she's not eligible for a diploma, which she'd need for college entrance. Also, it's pretty clear that's just not something that's in the cards for her. And that's okay. 
Will she live with me forever? Probably. Of course, if that's not what she wants or if that's bit what's best for her, then we'll make other arrangements. Of course, most parents never think like this. Most parents don't worry about how they're going to support their child indefinitely.

At this point, I don't go too far into the future. Of course, I worry EVERY SINGLE DAY about what'll happen when I'm gone- or when I am still here but can't take care of her. But, I'm not nearly as hung up on those questions anymore. I know most of the answers and I'm okay with them. I'm sad, of course, but I am okay. Instead, I spend a lot of time thinking about today; about right now. I open my eyes each morning to the same thoughts, what will she be like this morning: happy, upset, disconnected, engaged? wet?  I panic a little bit as I wait for the bus to drop her off: how was her day? how was her behavior? did she stay dry? I fumble for the communication notebook from camp or school. In the evenings as I tuck her in, I'm still thinking, what else can I do to help her? what am I missing? and of course, how am I going to pay for _____ (therapies, special camps, respite care, all these doctors who take zero insurance, etc)?

I crawl into my own bed each night, exhausted. Years of worrying, constantly being "on" and ready and able to tackle the next hurdle (which often comes up in the blink of an eye), have aged my brain and body. Sometimes my worries come to me in my dreams. Sometimes I get a reprieve until the baby wakes me up- and then I start worrying about him.

this week's prompt: a blog post inspired by the words "growing pains"

Tuesday, July 15, 2014

This is Our Autism

Our Autism is fluid. It's changed a bit over the years. I imagine it'll keep changing. This is Our Autism at nine and a half years old.

-It's still watching Sesame Street.

-It's buying or making everything associated with a new interest in hopes of connecting and reaching her.

-It's tracking and recording her poop and giving in when she begs for an enema to bring her relief.

-It's slipping away from some of the inclusion programs we once participated in. The typical kids just aren't as inclusive as they used to be, and I'm honest enough to see that it's just me trying to fit my square peg into round holes. Little Bird could care less who she's friends with. I think she just wants friends.

-It's having to change the sheets more often than I'd like to and then having to answer, "mommy, are you disappointment?"

-It's trying to ignore the posts and pictures of peers' vacations, dance recitals, soccer games, summer camp drop off/pickups.

-Our Autism is hours at the library or bookstores (if we can find them). Skimming and stimming through books on books on books.

-It's talking about what we're going to do today, what we ate today, where we're going. Again. And again. And again. It's fostering that curiosity and inquisitiveness.

-It's repeating to others everything she's said so that they might understand her.

-It's fighting for services in school. Even 10 more minutes of speech per week.

-It's giving myself extra time in the morning because she still needs me to dress her, brush her teeth and hair... and yet still running late.

-It's bracing for the ache when the baby passes her developmentally.

-It's loving to see how happy she gets to hear me cheer her on. Her biggest reinforcer is to know she's making me proud.

-It's hearing her sweet voice talk about who sat around our Passover seder table last year, again and again.

-It's letting go of the 25 hour per week therapy schedule and settling into minimal therapies and just being a kid.

-Our Autism is still seeking out new doctors to find ways to help her feel better.

-It's brainstorming better ways to answer an inquisitive child's "why is she like that?"

-Its less awareness, more acceptance.

-It's unsolicited I love yous that can brighten even the cloudiest days.

-It's perfect pitch and rhythm. And a lot of dancing.

-It's never sheltering her; always including her in errands and seemingly mundane activities, knowing that every stop is an opportunity for learning life skills.

-It's holding hands in the parking lot and snuggling together on the couch. It's gratitude that she's not embarrassed to show such affection toward her parents.

-It's letting go of some hopes and forming new ones, it's still struggling not to compare my insides to others' outsides, and it's going with an ever changing flow. It's being willing to be flexible, change a plan at the drop of a hat, and be okay with it all. It's finding friends who understand, have some compassion, and even a dose of empathy.

-It's spotting other parents who are holding hands with a child a little too old for that, going into the bathroom stalls with kids who look old enough to do it themselves, or pushing a big kid on the swings, and smiling that "I get it" smile, feeling like we're not alone out here.

-It's relishing in every moment of affection, every moment we feel connected, and celebrating Every. Single. Win.

This post is part of a collaborative effort to share "what does your Autism look like?" To read more or add your own, visit http://fourplusanangel.com/2014/07/this-is-our-autism/

Friday, July 11, 2014

*This Moment*

{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember. -SouleMama

Friday, July 4, 2014

*This Moment*

{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember. -SouleMama

Thursday, July 3, 2014

Beach Baby

Summer 2009. She was 4 1/2. We had a boat that we kept at a marina with a little "beach". Sometimes it blows my mind that my kids are being raised in the midwest. In my heart, I'm a California girl through and through. I grew up spending summers with my toes in sand and running from crashing waves, tanning on the beaches with that all too familiar smell of hawaiian tropic lotion- or more likely oil (gasp!).  I love how much Little Bird loves to swim and I love how much she likes squishing her toes in the sand. I still miss my beaches, though.

The Rear View Glimpse
A throwback thursday feature to look back and share a story or two.

Monday, June 30, 2014

Vitamins that my kid will actually take (and a giveaway)

Found a vitamin that my bird will take and I'm giving away a month's supply!

I give Little Bird supplements and vitamins and meds and salt baths and on and on. Most things I give her are mixed into applesauce or yogurts. She calls them applesauce medicine or yogurt medicine, which goes to show there's no fooling her. Even though I've been giving her these cocktails for years now, I'm always looking for ways to switch things up. I try different flavors and even different types of yogurt: coconut, soy, milks from animals other than cows, etc. Once I tried blending in strawberries with applesauce. Once. Because that was enough!

I was excited to get an email from a woman who'd heard about me through a friend and knew about my struggle to get vitamins into Little Bird. She told me she'd created a vitamin product that was a real hit with kids and would I like to try it. And then came a great part of the email: "I know you don't do reviews, so I'm not even going to ask. I just want to let you try these!" That's right, I typically don't do product reviews and I keep the blog ad-free. So, sure, send over the vitamins!

Within days, the package from alternaVites arrived. It's basically a pixie stick- remember that candy that must drive dentists crazy? At least you can totally get away telling your kid it's a basically a pixie stick! We tried two different flavors and Little Bird liked Strawberry Bubble Gum better than Raspberry Cotton Candy, but willingly tried them both. I tried them, too. Not as sweet as a pixie stick, but they're vitamins, so they shouldn't be! I was told they could be added to yogurt, pudding, or even made into smoothies. In fact, the alternaVites website has recipes for smoothies on their blog. I can't get my kid to drink a smoothie, but if you can, more power to ya!

The reason someone thought to suggest them to me is that they're GFCF, have none of the big food allergens (egg, milk, peanut, tree nut, wheat, soy, fish/shellfish). Also, no sugar. I've been trying to reduce sugars lately, too.

Anyway, I responded to Hallie at alternavites to thank her for sending them and all that. And you know what she said? She said, "hey, wanna give some away to other people? no review necessary!" And I was all, "heck yeah, I'll give some away!" But, really, I don't need to write a real review, I'll just tell you that Little Bird was willing to take this straight- she probably wouldn't have even noticed if I'd mixed 'em into yogurt!

So, here's the deal- I can giveaway a ONE MONTH SUPPLY to THREE people! YAY!!! Since I need things to be as easy as possible for me, I'll use the random.org number generator to pick a winner. I'll pick the winner on July 7th.

just go to my Facebook page: https://www.facebook.com/imjustthatway (and "like" it, if you don't already) then "like" the pinned post about these vitamins! Deal? Go!

Friday, June 20, 2014

*This Moment*

{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember. -SouleMama

Thursday, June 19, 2014

The Rearview Glimpse

The Rearview Glimpse
A new throwback thursday feature to look back and share a story or two.

Little Bird has always loved her pasta. I haven't always loved the mess! 
Can't even believe I'm about to start this all over again with J Bird.

Monday, June 16, 2014

Why I still believe in inclusion programming

I've shared before my feelings on inclusion and how pulling Little Bird from her Early Intervention preschool program in favor of a full inclusion program was one of the very best things I ever did for her. I really pushed the social goals above the academic ones and it made a big difference for a while.

Inclusion programs not only give a child with a disability some good ol' fashioned peer modeling, so she can see what her typically developing peers do, how they behave, etc. Yes, there's always a kid or two in a class that you don't want your kid to model, but still. A child can learn to feel more accepted and a part of the larger group in an inclusive environment, leading to more confidence and willingness to branch out, break out of a shell, etc. Of course, this is really just if the whole program, teachers, staff, and students are on board. We were beyond blessed with the inclusion preschool Little Bird attended where she was loved, accepted, and nurtured. She made some real friends for the first time ever.

Inclusion programs give typically developing kids the chance to learn from kids with disabilities. They learn that not everyone is the same and that's okay. They learn what it's like to help someone who needs a friend. They learn that just because a child doesn't speak, it doesn't mean they don't have anything to say. The also learn that a kid might be different in a lot of ways, but she also like pizza, swimming, jumping on a trampoline, and watching the same TV shows, just like her typically developing peers. The truly learn that the world is a big place and that there are all kinds of people who make it up. They learn all these things if given the opportunity and if encouraged to branch out and take a chance in befriending someone a little different.

Over the years, I've gotten to see adults be profoundly changed by the lessons they've learned in inclusion programs, as well. I've seen 1:1 shadows get inspired by my girl and become ABA therapists, I've seen 1:1 shadows get inspired by her to get degrees in special education, I've seen special ed teachers learn enough about Autism from her to go back to school for ASD teaching certification. This, however, was a really sweet thing to read on Little Bird's Sunday School report card:

"{Bird} has been my greatest lesson this year in that she made me see that just because someone does not demonstrate understanding in the same way as others doesn't mean they don't understand.... It is I who should be giving thanks, as having {Bird} has made me a better teacher."

Inclusion programming benefits everyone. Inclusion can happen anywhere: in school, religious school and services, on the soccer field, and in a ballet class. All around. Keep advocating for it, folks!

Friday, June 13, 2014

*This Moment*

{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember. -SouleMama

Thursday, June 12, 2014

One Step Up And Two Steps Back

End-of-the-school-year-itis. That's what one friend called it. So many of the kids are just a little off. A little wacky. There's an energy in the air. A bit of a frenzy. Schedules are out of whack at school. The pictures come off the walls in the halls. Less academics, less structure, class parties, etc. It's hard for some kids to know what to expect, I suppose. So, there's a lot going on at school that's just a little "off". That often translates to kids like mine being a bit off, too. Don't even get me started on how the season's allergens play their role. 

Here we are. Last day of second grade. My Little Bird is in her two steps back phase and I'm feeling sad and sorry for myself about it. It's temporary, though. I know this dance. One step up and two steps back. One step up and two steps back. Kick ball change. Rinse and repeat. One step up and two steps back. If you're counting, that kinda means never really getting ahead. 

Still, every single time she steps back, I worry. Is this it? Is this as far back as she will go? Will there be three steps back this time? Or worse: what of she doesn't step forward? What if she doesn't come back to me? She always does. No regression has been permanent with her. Still, I worry. Always. 

This time of year is especially tough on me with all the end of the year parties (that she hasn't been invited to), the ballet recitals (that she can't participate in), and the excitement over sleep away camps (that she can't feasibly attend). That's the part where I start to feel sad and sorry for myself. So, I'm sorry if I haven't "liked" your kid's dance recital photos- it's just that they tend to pierce my heart. Even after all these years.

Sometimes it's easier to hibernate with the folks who just get it. The ones whose kids are also experiencing end-of-the-year-itis; the ones who don't judge my self pity. I love my Autism parent support network and I'm so grateful to have them. This, too, shall pass. It always does. What's that little saying I see people post now and then?? "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." I just rolled my eyes at that. But, still, we dance. One step up and two steps back. Kick ball change. Rinse and repeat.

Sunday, June 8, 2014

J Bird Gets A Letter From Obama

Looks like J Bird has a fan in Washington, D.C.

Did you know that if you send a birth announcement to the White House, you'll receive a card welcoming your baby to the world from the President and the First Lady? It's true! 

Just send a birth announcement including baby's name, date of birth, your name, phone, and address to: 
The White House
Attn: Greetings Office
Washington, D.C. 20502-0039

Friday, June 6, 2014

*This Moment*

{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember. -SouleMama

Monday, June 2, 2014

First S'mores Of The Season

First s'mores of the season

Ben did all the work 
We did all the eating

J Bird ended up with crumbs on him :(

Monday, May 19, 2014

How I Spent My Mother's Day by Dani G

I'd planned on sharing what my family and I did to celebrate Mother's Day with pictures of the garden we planted and the list Little Bird wrote out of things she loves about me (which was clearly made up by some para). I'll still share those pics here, but my friend Lisa's post on Mother's Day really inspired me to tell my truth. A few years ago I committed to staying off social media on Mother's Day. I do think your kids are cute, but it's too much of a reminder of the grief I still suffer. It's a process. It absolutely gets easier as time goes on, but in many ways, it also gets harder. It's hard to watch the divide between Little Bird and her peers (many of your kids) grow exponentially.

There are no grand acts of love and appreciation on this holiday (besides the incredible and very public outpouring of love from Ben each year). There's no breakfast in bed made by my girl, no homemade cards that are actually made by her, no real recognition or understanding of the day at all. We talk about it, they talked about it at school, at Sunday school, and Ben took her shopping for gifts and cards for me. Still, it just is what it is.

So, this year for Mother's Day, we planted our garden...
If all goes well, we should have carrots, lettuce, tomatoes, basil, chives, peppers, beans, zucchini, and cucumbers.
visiting the nursery 
trying on hats between grabbing bags of dirt

Preparing the bed

sowing seeds

I planted flowers in the front

Cute gardeners

Little Bird's favorite part of the day 
And then my Mother's Day ended as most of them have- with me in tears. I don't just cry for me and my failed expectations or my self pity. I cry for her, too. I just want to help her. I just want her to feel more comfortable in her skin; to be able to express herself better, get her needs and wants met. I see her trying to ask for or request something but after two or three times of someone not understanding her, she just gives up. I hate seeing her give up. But, sometimes, it's just easier than fighting so hard. I get that. 

I'm so grateful that I have a partner that gets me; that lets me cry without shaming me or minimizing my feelings. Instead he just holds me and encourages me as my tears fall. And I don't shame myself anymore either. I know it's a process and I try to work through and walk through it all with grace and dignity, all the while loving and fighting for my Little Bird. 

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See, it's not just my mom! (since Jan 1, 2010)