Full Disclosure Friday Feed

This, That and A Few Million Other Things ...

Hello my friends, and Happy July! πŸŽ† I hope your new month is off to a great start!

I'm popping in today to wish you all well and share a little bit of our past few weeks. Now, here's your fair warning - this is a very BIG post with a LOT of pictures and a few (ok, a lot) of notes. I feel like too much time and too many events are passing and I hardly ever get to pop in here and say hi and share with you all what's going on with my family. And that's always been the heart of my blog, really - sharing our days and the big and little moments for which we are so grateful. πŸ’›

Back in my blogging heyday (say, mid to late 2000s) I was blogging ALL the time and pretty much "reporting in" every day! Well, time is not as flexible for me these days, though I refuse to say my energy is not what it once was - ahem! But anyhoo, enough of my babbling, here is a look at some of the things we got up to last month! It was quite a fun and busy June!

First we start with this ...

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Our Crackerjack GRADUATED!!!

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On Saturday, June 16th, our second son, Crackerjack (this boy!) officially finished his homeschooling journey. (Please excuse me while I sob for a moment.)

Now, not all homeschoolers have a graduation ceremony when they are done with their high schooling, but we were very grateful to be part of a beautiful one. For many years we've been members of a wonderful homeschooling organization, a place that offers small classes for middle and high school-age homeschoolers. Crackerjack took classes here for seven years - Art, Spanish and, just this past year, Karate. We will miss this community so much now that we no longer have kids enrolled here ... but I dearly hope that perhaps someday Little Bear will be ready to join!

Anyhoo - all to say, above is our young man walking in to the ceremony hall. There were 12 kids in all who graduated, and the event was entirely organized by the kids themselves and their parents. It was so fun to be part of the planning!

(By the way, the kids chose to walk in to this song instead of the traditional "Pomp and Circumstance.")

We were very blessed to have many family members attend Jack's graduation, including ...

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Mum and Dad, and Bill's Mom and Dad - aka, Nana & Papa, and Grandma and Grandpa!

And here's the rest of our crew, awaiting the start of the ceremony:

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Bill, his folks, my brother Matt, my folks, and my Auntie Marcia and Uncle Karl. 

(Bookworm had Little Bear outside, "keeping busy" - aka "quiet," lol.)

Here is our young man, giving a speech called, "Reflecting on the Year."

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And here we are with our graduate, presenting him with his diploma and sharing our pride and joy in a speech given through a few tears!

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Each pair of parents came up on stage to talk about, and to, their beloved child. And as you can imagine, the speeches were very personal and moving! Another nice touch, the kids all handed their mothers a flower before leaving the stage. We had discussed getting roses or daisies for this activity, but happily, our own peonies were overflowing our garden! So plush, pink peonies it was!

Here are two of my fellas ...

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One who'll be off to college in the fall, and the other who's just starting his homeschooling journey!

Family photo!

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A note about my dress - I had all of about 20 minutes one morning to pop into Macy's and find SOMETHING to wear to the graduation!! Amazingly, I found this one in about five minutes, and tried it on right away.

A. it fit, B. it was marked down, and, C. ... triple bonus! ... the colors matched not only the graduation but also Cj's college's colors as well!

(You all know I'm all about color-coordination, lol!)

After the ceremony, we returned home, and enjoyed a simple luncheon. (We plan to throw our boy an official party in August.)

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Here is our Earlybird who was kept company at home during the ceremony with his ABA therapist. (It would have been very hard for EB to sit through the graduation - too much noise and way too much emotion!) But while EB and Hannah waited for our return, they baked some lovely graduation cupcakes!
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It was such a wonderful day, a lovely way to celebrate and honor the end of our homeschooling journey with our son. It was (and still is) very hard to grasp that "new reality" - but two days later he was off to Emmanuel College for Orientation! And we now have the Summer to enjoy being "done" and prepare our son for his freshman year  ... meanwhile, I have a few scant months to prepare this mama's heart for the big changes to come this September!

Ok, are you up for more stories?? (I warned you this was a big one!)

Speaking of Earlybird, he's been doing very well with his therapy (and med) and making some nice strides with community outings! Here are some pics from a recent Stop 'N Shop trip ...

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He's even been making his own lunch!

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Now, this being (almost) Friday, I'm going to include a little "full disclosure" in my post - because I just had to walk away from this draft for over an hour. Earlybird had a very hard time today - the heat is brutal, his therapists are on holiday break, he's had way too much down time, not to mention, screen time - and it all added up to a bored, hot, restless, grumpy, tech-addicted kid, and he just now had a really ugly, 45 minute meltdown. The kind that involves shouting and crying and stomping and has us sending Little Bear downstairs with his brother because it's just way too upsetting for him to witness ...

So, you see, EB's making some awesome progress and the good times (and good moods) are stretching out longer and getting more complex - in that, he can handle more challenges now - shopping at the grocery store, getting a haircut, walking near a busy street, listening to his little brother sing "Bingo" in the car - but it's not all figured out just yet. Not even close. I'm not sure it will ever ALL be figured out - his special needs and challenges will change through the years just as they have up to this point. But I share both sides of the coin with you in this post because I want other special needs parents to take heart not just from our good times, but also from our not-so-good times. We have them, too ... and we struggle a lot. (And it's just as easy to feel disheartened by someone else's good times in light of one's own curent struggles.)

Truth be told, special needs parenting is the hardest thing I've ever had to handle in my life ... hands down. Thankfully, God blessed me with the support team I needed - a loving and understanding family, amazing therapists, and most especially a strong and nurturing marriage. I don't know how I'd ever do this alone ...

But, let me say this: I am SO encouraged by how much EB's been able to handle and the new things he can do. I KNOW we have only more progress to make in the days (and years) ahead. I try not to let the tough times (like this past hour) rattle me too much. Tomorrow is a new day and our therapists will be here and we will get back on track ... in fact, as I continue to type, EB is here with me in the family room, and all is calm. All is going to be alright ...

We're all in this together, after all! Case in point ...

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All six of us at my cousin's party on the 4th of July! What a GREAT day that was! (More pics below.)

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Ok, here I am with the older boys, my folks and my brother enjoying a birthday lunch for Bookworm last week ... and eep, can you believe he turned 23?!

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Honestly, how is it I now have a child who is a TWENTY-THREE YEAR OLD MAN? #holymoly #timeflies #toofast

At 23, I was engaged to be married and only three years away from motherhood ... and seriously, all of that doesn't seem that long ago ... sigh. But don't get me started, on the whole where-has-the-time-gone thing, lol! That's a whole n'other post.

So in this pic, we had just come from seeing Jurassic World: Fallen World - which was really good! - and tucked in to lunch at Legal Sea Foods - also really good! (And Bookworm's favorite restaurant.) Bill was working at home so he watched the younger boys ... but I plan to take him to dinner next week for HIS birthday! :)

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Ok, forward we go - on to the Fourth!! And how was your holiday, dear (American) friends? I just LOVE this holiday, and it was a really nice one this year. Of course, it was hotter than blue blazes here in New England but just lovely all the same. Sunny, breezy and everything was just so green and bright!

I love to celebrate even when it's "just us," so before the boys woke up, I arranged a festive breakfast buffet ...

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(My 4th grade music class book!)

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And flowers from the yard - picked by Little Bear (still in his pjs) and me. We searched for "red, white and blue" blossoms!

It might be all small potatoes in the scheme of things, but I just love doing this kind of stuff. (Hence, my homemade planner so I can work these kinds of things into our busy family schedule!) I think it will make for nice memories ...

But then, in the afternoon it was time to head over to my cousin's house for our family's annual 4th of July party. Mike and Krista host a fantastic party, and we always look forward to this get-together! And this year, Earlybird's therapist came with us to support him - help him socialize and handle the heat. (It was in the 90Β°s!) It was wonderful that he was able to join us!

Here are some peeks at our day:

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EB keeping his therapist, Hannah, cool. :)

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Little Bear, who decided to "sit with the girls" and come to their rescue with his battery-operated misting fan.

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My older boys! Bookworm (23) and Crackerjack (18).

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Beautiful holiday signs made by  my cousins, Emily and Elizabeth. πŸ’™

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The tree swing is always a big hit with my boys!

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Bill with my Uncle Karl. :)

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Little Bear with handsome DumDum, wearing his holiday finery ... :) 

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Lovely to see my Auntie Marcia, Cousin Sue, Auntie Pat, Mum, and my cousin (by marriage) Vicki.

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My lovely Mum with my dear cousin, Kara. This beautiful young woman was my flower girl!!

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Dad (on the left) with his brother, my Uncle Dave. πŸ’™

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And ohmygoodness, he was SO pleased to be allowed to eat cheese puffs!!

Some more yummy things from the party ...

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My mum's "triple-layer brownies." They are legendary ...

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A gorgeous and delicious strawberry trifle made by my cousin, Elizabeth. (This was the dessert I chose, and there were a LOT to choose from!)

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Cute candies!!

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Krista's beautiful dessert station. The cake in the front center was Little Bear's contribution! :)

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This here is Hannah, who is Earlybird's ABA therapist and, without a doubt, an angel sent from heaven to guide us. She has such a beautiful way of reaching our son, guiding our journey, and showing us how things can be ... she has also become dear friend. πŸ’™

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More swinging!! What a fun day this was ...

It's such a gift to be able to attend an event like this, all of us together. Usually we have to spit up and take shifts, or one of us (Bill, myself or my mum) has to just sit out an event if EB's having a particularly hard day. Thanks to Hannah, we felt confident we could bring EB and we could relax while we were there. Happily, our boy not only handled the party beautifully - he ENJOYED himself, too!

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And just look at that smile!!

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Alrighty, I think I should wrap things up now, seeing as how I've kept you here so very long! I'm so grateful you joined me, and allowed me to share a little bit of our June ... and my rambles!! I'd love to hear from you, too, if you have a moment!

A quick bit of business before I go: our next Mitten Strings book study will be delayed ONE week. (I'll bet you're not surprised, lol.) I just have not had a chance to re-read the chapter yet! ("Nature") My posting goal is a week from Sunday - July 15th. (St. Swithin's Day!)

Ok, I'm off for now, truly - but I wish you all well, and a peaceful day (or evening) ahead. Thanks so much for stopping by ...

I will see you here again very soon!

p.s. BIG planner news coming next month!


Full Disclosure Friday: Progress Not Perfection

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Happy Friday, my friends! I hope this week has been good to you. I'm sorry my posting has been rather sluggish lately - we've been in a rather busy pattern lately. But as we near the end of the year I feel my schedule is finally starting to smooth out a little. :)

So today, in the spirit of full "Friday" disclosure, I'd like to share another glimpse into our special needs family life. We've had some significant changes to our therapy situation recently, coming at a time when Earlybird is really struggling with a variety of challenges, and adjusting to a new (and first ever) behavioral medication. One beloved therapist moved away, and a new one began ...

But with change comes renewal, and with fresh perspective comes hope!

We've also been granted more ABA hours so Earlybird is now getting more therapy assistance than ever - and this includes weekends! This development could not have come at a better time, and with the med we started him on this spring we've been seeing some subtle improvements. Overall then, after a bit of upheaval, we are getting ourselves (and our boy) back on (a really good) track!

Now, I try to keep things as real as possible here. Yes, I like to focus on the positives, but I think there is also much to gain in sharing our tough times. Fittingly, this post highlights both sides of our autism journey. Oftentimes a new success highlights the larger struggle still looming - so though we're ever mindful of keeping perspective, it's so important to celebrate every step, no matter how small. 

So  ... yesterday, we braved Target together, Earlybird and me (and his therapist).

And this might seem like the most common of events - shopping at Target - but let me tell you, it was anything but! For Earlybird, managing a place as over-stimulating as Target is a real emotional and physical challenge. But, with Little Bear's birthday coming up, he really wanted to pick out his own gift ... πŸ’™

A bit of back story, first:

I shop at Target all the time, but it had been 6 years since Earlybird last stepped foot in this place. That time he was much smaller, but his meltdown was HUGE. (Wailing and thrashing-on-the-floor, security-alerting huge. 😳) That day sticks out as one of those memories we point to when confessing just how very hard things can get. (I think most autism families have them.)

Well, yesterday, with the support of our ABA therapist, our boy returned to that very same store to buy his own β€œperfect” present. He'd been talking about it for weeks, but to keep it as simple as possible, we prepared an "action card" for him. On it was listed three things:

  • present
  • card
  • gift bag

ALL DONE √

The good news is ... he did it!! We made it through the store and he completed his card.

The less-so-good news? He struggled the whole time ... and mightily.

The parking lot was busy, the cart was noisy, and just inside the doors, he stopped and said, β€œI want to go home.” But with the encouragement of our therapist, we got him moving and directed him straight to the toy aisles.

Oh, he balked, he fussed - he even yelled and stomped! But 10 (loooong) minutes later, we were back in my van headed home. πŸš™ πŸ’¨

Of course that was not a fun ride ... because EB's emotions boiled over and he really let his anger and anxiety loose in the backseat. (Thank God for our therapist!)

Were my nerves frayed? You bet. But was the mission accomplished? Yes.

So we're calling it a win. :)

Folks, don’t ever take the β€œeveryday” things for granted - the things you or your children can do without a worry or second thought. Be grateful for every mundane and meltdown-free moment. And celebrate every hard-won success!! #progressnotperfection

I am SO GRATEFUL for the support we receive and the hope we keep kindled in our hearts. πŸ™πŸ» We are so blessed by this boy whose heart is pure gold and whose hopes are the same as anyone else’s: to be loved, and live a meaningful life.

Is shopping at Target meaningful? πŸ€”

Well, it sure can be! Because our son faced his fears so he could buy his own gift for his brother. Those ten minutes seemed eternal to him, but he did it! πŸ‘πŸ»

And I can’t wait to see the look on *both* my boys’ faces when that gift is unwrapped! 🎁

Well my friends, thank you so much for stopping in today, and allowing me to share a little of my life as an autism mom. I hope you all have a wonderful weekend, and I will back here again very soon!


Full Disclosure Friday: Autism Siblings ROCK

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Full disclosure: Life with an autistic child is challenging ...

But as parents, we are blessed with a deep and unconditional love for our child as well as (not always, but often enough) the mental and physical reserves we need to weather what this life - and this child - throws our way.

As for life with an autistic sibling, however ... well, that's a whole 'nother kettle of fish.

To put it plainly ... my greatest joy in life has been being a mother to my boys, but my greatest fear is that I've somehow bungled it. That perhaps I could have expended more - energy, flexibility, confidence, whatever - to have met the needs of ALL my boys better than I have. That when Bill and I faced the challenges of autism parenting, we could have been braver or more open-minded. That we let our fear (and perhaps lack of sleep) make the decisions for us more often than not.

I struggle with guilt - not all the time, but often enough - that so much of our family life has been shaped by the pressures of Earlybird's autism. I worry that our older boys had a childhood that fell short in significant ways, or that they missed out on the life-shaping kinds of experiences their peers probably enjoyed ...

We don't travel. We don't eat out. We rarely go to the movies ... or museums ... or the town parade. They've been to see fireworks ... once.

And that's not to say that we haven't been aware of these omissions (acutely so) but I hesitate to say, "Well, we do our best." Because I'm so afraid maybe we haven't.

We are, however, getting better at this, because finally we are getting the right kind of help and figuring out ways to make things happen that we couldn't before - for Earlybird AND his brothers.

But as for our older two boys ... well, they're young men now. Their childhood is over. And though I feel it was a good one - full of love, togetherness and home-centered joy - there were times of turmoil, too. A lot of tiptoeing around their younger brother's moods. A lot of activities that had to be missed - or seriously curtailed - because Mom and Dad were simply not able to manage them. (Logistically or emotionally speaking, depending on the day.)

How often did they surpress a need - or a dream - because they could see how stretched thin their parents already were?

I've often said our older boys have gained truly great gifts as the brothers of an autistic person. Through the years they've had ample opportunities to practice such virtues as patience and tolerance, compassion and understanding ...

I'm sorry we can't go to the pool party, but Nana can't watch Earlybird for me and there's no way we can take him.

I'm sorry we can't make it to the beach today (even though we've already driven halfway there) but your brother is melting down and we need to turn around.

I'm sorry I can't come inside and mingle with your friends' mothers - EB needs to stay in the car, and therefore, so do I.

They are the least demanding young men you could know. They understand. They accept. They never-ever make us feel we are cheating them. And yet ... still, I worry.

Did we put them first, too? Did we honor their individuality? Did we meet their needs? Or did we rely on their easygoing natures a little too often?

Anther gift they've earned through the years is that they have a keen sense of acceptance - they do not judge. Because they KNOW firsthand that you must always give someone the benefit of the doubt. They know better than anyone that the full story is not always what can be observed at first glance. 

And while they may not always be compassionate towards their brother (they are human after all!) they mostly always keep their tempers in check. Because they've understood that they are the older brothers ... they are the example from which Earlybird can learn. Above all, they have been an incredible support to Bill and myself, especially perhaps since the birth of our Little Bear.

And here's the crux of my full disclosure today, the latest worry to niggle at my heart ...

How will Little Bear handle his brother's autism as he grows up? How will it shape his childhood ... his development and personality?

When we found out we were expecting a fourth child, back in October, 2012 ... we were quite surprised - make that shocked - as well as extremely happy. But yes, a little anxious, too! I had so far enjoyed three wonderful pregnancies as a mom on the young side (at 26, 30 and 32). Now as "older parents" having a "geriatric pregnancy" (their words, not mine!) we were understandably a little concerned about some of the risks that come with pregnancies over 40.

There was my health to consider, the baby's of course, and then there was our family itself. As the parents of a child with autism we couldn't help but worry about the potential risks with this next child. We knew he would be special - each and every child is - but would he have special challenges? Older parents have a higher risk of having a child with autism, as do parents who have already had a child on the spectrum ...

When we were feeling brave we'd say, well, we already know how to be autism parents and we know this child will be loved and amazing and everything will be fine no matter what. When we were not feeling brave ... well, it was harder to feel so confident. We worried about how we'd handle the needs of an infant AND those of our special needs son. We worried about practical things like the number of bedrooms in our house and the hours of sleep we wouldn't be getting ...

But I think we worried most of all about how a baby would affect Earlybird. How would he handle this? How would his autism affect his ability to accept and embrace a younger sibling?

Well, Little Bear arrived hale and hearty (after a few agonizing minutes spent blue and being assessed by a team of neonatalogists) and EB surprised us with how easily he both accepted AND embraced his little brother ... but soon enough we found ourselves wondering:

How would Little Bear fit into our special needs family, an environment that on most days could be best defined as, "loving chaos?"

How would Earlybird's autism challenge HIM?

This is a question we're still finding answers to ... especially now that Little Bear is nearly five years old, and just such ... a little person. Aware now - sometimes too aware! - and full of observations and opinions and energy and needs ...

But this post isn't about our answers ... we're still working on those. Every day I am keenly aware that EB's autism is quite apparent to Little Bear - who is also keenly aware that his brother is different. And sometimes that's a good thing ... and sometimes not. 

Already Little Bear is learning that EB can't always help his behavior, and that just because EB does (or says) something, doesn't necessarily mean it's ok for him too. Our youngest son is what you'd call - ahem - a very strong-willed child, and so I think this will be a really good thing for Earlybird. Developmentally, EB is still quite young so as LB grows, they can learn from, and with, each other. With the support of their Mom and their Dad, as well as their much older brothers, these two boys will one day be the best of friends ... of that I am sure (mostly).

Moral of the story: 

Autism siblings rock

Every child is special and every child has needs ... what a blessing it is to be given such responsibility as parents. What a gift to be so trusted with these beautiful minds and dear hearts.

I sincerely hope that as Little Bear gets older, we only get better at this. That we're able to learn from our mistakes, and remember our strengths, and see past our limitations. That we will model for our boys a level of patience and resilience and compassion that they will emulate as they get older - because one day we'll need to rely on three of our boys to take over for us and see to their special brother's needs. As hard as it is to say this - think this - Bill and I won't always be here and that I think is perhaps the greatest fear of an autism parent ...

Above all I pray we may continue to find the kind of help we need - whether it be from family, friends, therapists, medicine (or most likely a combination of all) - that supports not only Earlybird's progress, but the health and vitality of our family life, too. This is what I hope for most of all.

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Well everyone, thanks so much for letting me share this part of my life with you all. I know I rambled on rather long, and I could probably spend another few hours picking back over this post and making it read a little smoother, but alas ... I'm afraid my computer time has reached its end! So for now I'll wish you all well and a peaceful day (or evening) ahead ...

Take care of yourselves and your loved ones, my friends ...

See you all here again very soon ...


Full Disclosure Friday ❀

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Hello my friends, and Happy Friday. I hope your week's been a good one!

So I've decided to start a new blogging tradition here (or maybe it already exists and I'm just late to the party) called "Full Disclosure Friday." My idea is this - every once in a while, on the occasional Friday, I will share an "inconvenient truth" of some kind, in order to shed a little light on how things sometimes go around here. Because I may be a great one for sharing plans, but I think it may be just as important (if not more so) to share the times when my plans don't quite come to fruition.

Case in point ...

I shared the above picture on Instagram today. This is me (and my polka dot slippers) in the living room very early the other morning, staring down at the usual assortment of things one might find on our rug: Legos, books, pine needles leftover from Christmas ... plus, a paper chain project gone horribly awry.

Yes, this is what has come of our Lenten paper chain, the one I so thoroughly described last month.

Now, I have a post in me somewhere (and I'll do my best to find it) about what happens when your thoughtfully arranged plans go awry - and a project you lovingly assembled for your children is met with disinterest at best ... and defiance at worst. πŸ˜‘

Because, this pretty paper chain? Well, safe to say it wasn't quite the hit I hoped for with our special needs son. As you see here, it's no longer hanging on the kitchen door as a meaningful visual, secured to the bottom of a plain paper cross - but instead laying here scattered and squashed on the living room floor.

And there I was thinking it was JUST the thing for Earlybird this year. πŸ™„

(#everydayisautismawarenessinourhouse)

Plans are fun and easy to make, it's keeping them that can be tricky. Especially when you're working with children ... and most especially when one of your children has special needs. (At least, in my experience.)

Back when I made my initial Lenten plan, what I didn't anticipate was that the paper chain project would really and truly BUG my 16 year old, autistic son - to the point where it was getting plucked at and pushed around so much it was more of a pain than anything. Getting caught in the door, the links all dusty and disorganized ...

Here I was I trying to create an atmosphere of peaceful preparation - but instead I made my son feel anxious and stressed. And let's not even begin to discuss the reaction he had to dipping his fingers into the ink pad for the cross -  THAT was a disaster from the get-go. 

So why did this happen? What about this project distressed him?

Well, as with so many things with Earlybird ... we just don't know, because he's not always a predictable kid. What works with EB once (and paper chains have been a real hit in the past) doesn't necessarily work for him again.

And just like that, when I think I'm really rocking the whole special needs parenting thing, I get a swift reminder not to take things for granted ... and to always keep our plans fluid!

So for now we're just keeping things calm around here, and focusing on the concepts of patience and observation. (And best behavior.) Filling low-key days with low-pressure activities that appeal to our son - but don't agitate. As we like to say in our family, some weeks are for pushing a little, and others are for just keeping afloat ...

Our Lent is looking like the latter to me.

Now, I know I'm not alone in this. I am sure many of you have had things like this happen that prove just how tricky it can be to read our kids (whatever their needs) and meet them where they are (not where we envision them to be).

So what do we do when those carefully crafted plans don't click as well as we'd hoped? How do we handle the disappointment and even perhaps, the dismay?

Well, first we gracefully admit defeat (on social media, natch), and shelve those β€œperfect” plans for another day. Then, we pour ourselves a big cup of coffee (or glass of wine as the case may be), tune into our inner GPS and do our best to "recalculate" ... πŸ€”

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Because if the season of Lent teaches us anything, it's that we must always hold onto Hope.

❀

Thank you, my friends, for listening. I know this wasn't my "usual" post, but it felt like something I needed to share. As always, I thank you for joining me here and if you too are parenting a challenging child, I'd love to hear from you - please know I am with you! And if it helps, we could talk more about it. :)

Keep on shining, Mamas! And don't forget: we light the way for our families, but we must kindle our own little flames first!

Take care, everyone ...

I'll see you here again very soon!