for when your child doesn’t fit in

While we all have those parenting moments when we notice something a little quirky about our kids – not all of us have the privilege of anxiously wondering how much that quirk will hold them back socially. And then the day comes when it does.  And that cute little quirk becomes a massive elephant in the room of your child’s social life.  Others notice the quirk(s) and begin to act as if… As if your child couldn’t possibly be liked by very many people because she/he is different. As if they are already on the path to Outcast. As if they are not worth the effort.

And it cuts. Deep.
Then, another worry sets in. You’re just waiting for the day to come when other children, maybe even the ones that now call themselves “friend”, will start to tell your child how he or she is different.  And, sure enough, that horrid day arrives.  You overhear another child utter words to describe your child that flitted across your heart, but only in shadowed whispers.
And that heart of yours… it shatters.  Into a million pieces. One for each thought that comes at you about the social road ahead.  And that road is paved with the shards of your heart.
It’s hard work. Raising kids.  It’s hard work, with an emotional cherry on top, raising a child with special needs. Whether those needs are social, physical, emotionally, or some combination, it doesn’t matter.  It’s just hard work. But, like all things that require extra effort, the rewards can be huge.
The rewards can be outrageously great on some days, and barely identifiable on others. Staring deeply into the eyes of the one you call “child” and seeing love reflected back there is an incredible reward. Hearing words of love from this same child? There simply is no greater reward, this side of heaven, for the tantrums and all-nighters you’ve put up with or put in.
But, for those barely identifiable days when you’re sure that your heart has not one single shard left to spare, and in those moments when you rail against the “gift” of being the parent of this child, remember this:
Not_Alone_Creationswap_Richard_Sherrill_Missindeedy
You just look to your right and you’ll see me.  I may need you to put your arm around me and forget about your tattered heart for a moment while you scramble to help me pick up a few shards of my own.  And on the days that I’m feeling strong and seeing the joy in this journey, look to your left.  Let’s promise to link arms and head over there and help that friend up as she struggles under the suffocating weight of learning that her child might never “fit in”, for the very first time.
One thing is certain – we do have to walk this road. It was chosen for us for reasons we may never be able to understand, this side of glory.  But we must always be willing to link arms and remember that we don’t walk it alone.
No.
Never alone.
Sincerely Indeed,
Missy
Today’s post is from dear, sweet Missy.  You can find Missy writing anonymously about the mishaps of daily life with an Engineer, a child with an Autistic Spectrum Disorder, and a preschooler who’s convinced she’s 14.  She is a Southern transplant living the dream in the New England area.  The mishaps are a’plenty.
 

It’s a new day!

*shakes off the sleep*

Good morning, Mammas!

I hope your summer was sunny and full of rest.

Or at least, PIECES of it 🙂

Today is the registration kick-off for Fall groups over at (in)courage!

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If you find yourself short on time but desperate for community, there’s a place for you HERE. It’s all for women, and there’s a group for nearly every life-stage, profession, or stage of life. Maybe there’s a perfect fit for you?

Registration starts today continues throughout the week.

This session goes from September 23 through November 8.

Think about it 🙂

And, we’ll meet ‘cha over there.

the body of Christ

In April, I was asked to share our family’s story with a group of folks who have financially and prayerfully supported our schools by giving to the Educational Support Services fund.

While I have often written about our journey at Apple Pie, Anyone?, I had never given a speech before. It was no small joy and even honor to stand before so many who have walked with us for so long. I considered it an opportunity to say ‘Thank you.’

But, as I was writing everything down, another Truth came through loud and clear:

The body of Christ is incomplete without my special-needs child.
The body of Christ is incomplete without my imperfect self.
The body of Christ is incomplete without You.

Hear me, Friends. Whatever your cross, however tall the weeds you are pushing through right now…

The body of Christ is incomplete without you. He does not make mistakes and He is not sorry. He is sovereign and holy and just. Grace and peace to you today.

Love…you

Right now.

Bella’s formula comes from a medical supply company.

And her snacks are ordered from Amazon.

I keep joking that some day I will be able to just go to the grocery store to get this girl some grub.

 

But for now, it’s phone calls to get prescriptions (yes, prescriptions) for her formula and online ordering.

 

I’m currently on my fifth attempt to get Bella her formula. Fifth.

 

First attempt. Got dropped off on our front porch and sat for days while we were out of town for the holidays. (Labels says DO NOT FREEZE!)

 

Second attempt. I called and explained that we needed to figure out how to get a delivery when someone was home (maybe have it dropped off at work?). Right, someone will call you back to figure this out, they advised. 2 days later, another shipment gets dropped off at our front door step (and then left out for hours while we were yet again away for the holidays).

 

Third attempt.  Hi. I’m Kaylee. I need to place a re-order for Bella Page. But. Ok, and I don’t want this to sound mean but I NEED for this to not just be shipped. What I need is for you to ship it to my work address so that I can get it and keep it indoors. I’ve already tossed two shipments (and that’s a LOT of money for you folks!) So please. And thanks. And seriously, I’m not trying to be mean. It just needs to be right. We’re getting a bit low on formula. So I need this shipment to work….MAN ON OTHER END OF PHONE TAKES MY INFO, PLACES ORDER; ALL WHILE I SENSE A TINY BIT OF ANNOYANCE ON HIS END…. Okay, lady. You’re all set, He says.

 

Me, typing away a work email, responds: Love….you…

[DRAMATIC PAUSE TO LET IT ALL SOAK IN]

 

No good way to end that awkward moment. So I just hang up!

It was a slow I love you. Not quick. Not slurred.  It was long, clear and…. awkward. Really awkward.

 

Fourth attempt. The local distributor prefers we use their national center for shipment as they do not keep the formula on hand (mind you, I’m limited who I can order through as insurance has approved distributors). To handle the mistake of the two first orders, the local distributor drops off a shipment. Thank you, kind nurse, who went out of her way to drop this off on a Friday after work!…. It was expired.

 

Fifth attempt. Nailed it. BINGO! All set. Formula in hand. Not frozen. Not expired. NAILED IT.

 

That said, being a mom to a kid with special needs.

It is a world in and of itself.

 

You throw out typical parenting books.

Finding parental guidance – finding community — is hard (yet a must)

 

You spend hours doing your own research only to find out the doctor claims to “know” your doctor more than you do. Bless doctors, for the smarty pants they are – for the knowledge and expertise they have to offer your kid — but they at some point, belittle, ignore, forget, neglect to look at your kid’s chart before or during an appointment. They are busy. They are a doctor to many.

 

You cry. A lot. More than you ever thought you could. You cry to grieve. You cry with joy. You cry because you —- literally — are going to lose-your-mind.

 

You spend hours in waiting rooms, at doctor appointments and at therapy.

You fight hard. For everything: for their education, for financial support, for their development.

You advocate. To have your child notived. To have your child heard.

You. Often are the only voice they have.

 

You watch. analyze. critique. Wonder-dream-and-hope for signs of growth and development.

You worry about their future in ways you never thought you would and you fear deeply about what will happen when you’re gone.

 

It’s alarmingly different than you could have ever imagined.

It can sometimes make you laugh.

But most days you just try to survive it with grace and poise.

 

Oh formula guy, I do love you. For helping me get what my daughter needs. 

And for the good laugh I got today.

It was awkward for you, I’ve no doubt.

Please know. It was no more awkward for you than it was for me.

Send me your address and I’ll get you a proper apology in the mail. And, next time I promise to keep it professional. Promise. 

Just keep sending that formula!

Kaylee (and husband, Dan) have one daughter, Miss Bella, who lives in a world of FPIES,EoEDelay in Gastric Emptying.  Kaylee works full-time at Start Garden and fine-tunes plans to take over the world while driving to doctors’ appointments.

the art of unfolding & resting

Driving to work today, radio on, I heard:

 And what was said to the rose to make it unfold

Was said to me, here in my chest…

This line specifically:

What was said to the rose to make it unfold.

Whenever I hear it, I stop dead in my tracks.

There is a sacred pause…The mystery and magic of this line makes me weak in the knees. I just want to take a deep breath and soak it in all over again like it’s the first time I’ve heard it.

I’m sort of an arm raiser during praise and worship. Not every song, not every Sunday. But it happens. When something moves me enough — I throw my hands up in the air!

Why the automatic response of praise is to often raise your arms has always baffled me.  Seems like such a funny thing that our bodies just know what to do when we’re moved…

All of us opens up.

But if the mastermind behind the flowers is the mastermind behind our souls I guess it isn’t all that crazy.

His voice. His mystery. His beauty.

It makes things unfold.

Flowers.

Hearts.

There’s an art to the blossoming.

Flowers don’t just flop open in the morning.

Nope!

They ever so slowly, ever so patiently, unfold

— displaying endless beauty for all to see.

Sometimes I forget this art. The art of opening up.

If flowers don’t flop open, why do I think my heart would just flop open?

Maybe there are times my heart swings open it’s doors to take in the world.

But other time, I am slow. Just like a rose.

I unfold.

Roses are the perfect image of God’s work on our hearts. His love slowly unfolding the mysteries of our hearts

— with each beat of his love in us we open up just a bit more. 

Until we unfold. Fully and openly.

We open up to display all our beauty.

…….

This morning, the next few words that follow in the song struck me — I’m usually so caught up in its preceding lyrics that I miss this:

… so be quiet now and rest

Anyone ever watch a rose (or any flower for that matter) all day?

Doesn’t do much.

It opens up.

And then it just basks in the sunlight.

All. Day. Long.

Apparently. Roses know how to rest.

And maybe God wants us to be more like roses.

‘Cause if we were.

We’d open up.

And then we’d just bask in the warmth of his love.

All. Day. Long.

I forget this.

But today…. I stopped and smelled the roses.

….And they were a beautiful reminder to unfold and rest.

Kaylee (and husband, Dan) have one daughter, Miss Bella, who lives in a world of FPIES,EoEDelay in Gastric Emptying.  Kaylee works full-time at Start Garden and fine-tunes plans to take over the world while driving to doctors’ appointments.

a little help from your friends

[forgive the wacky formatting, Friends… I’m working on it, but the internets are against me today]
The Sweetboy that God gave to us, is delightfully quirky.
Sometimes, though, The Quirk doesn’t manifest itself in socially healthy ways.
Like, when the adjustable waistband in your shorts has unraveled and said shorts are now pooling around your knees.  And you aren’t affected.  But, all of your friends on the bus most certainly are.
Lord, why? He deals with so much, already!
“Why, this is the perfect opportunity to introduce a Social Story about your clothes fitting correctly!”, I thought.
You’ve heard of these magical things – social stories. They are often used with children who experience difficulty expressing language and/or understanding receptive language.  These short and simple stories – with simple pictures- allow children to see how a doctor’s visit might go or how a relative’s visit might work or how you must wear underwear under your clothing.  (Oh, to be a fly on the wall of the family for whom an encounter has just left them shouting, “WE NEED A SOCIAL STORY FOR THAT!”)
And so, here was our Social Story about Shorts:
Shorts are a kind of clothing you can wear.
  shorts_l
Zip and snap your shorts when they are around your belly button.
zip_shorts_missindeedy
Shorts should not fall down.
stomach_shorts_missindeedy
The End.
Not. Even. Kidding.
These kinds of stories have gotten us through our first dentist visit, bringing home a baby sister, and the death of our beloved dog.
Sometimes, that wonderful “not caring what other people think” quality of Sweetboy’s?  It get’s him into hot water socially.
Like, when your shorts are falling down around your knees when you get off the school bus. Only, instead of complete embarrassment over this incident in-the-moment, Sweetboy simply told me, in a very matter-of-fact, ASD way, “My shorts fell down all day today.”
Because this blessed child?  He doesn’t think of it as socially unacceptable that his pants were falling down All The Day Long.
No. This blessed child just thinks it was a nuisance, and so he asks me to fix his shorts so that it won’t happen again, please and thank you.
So, to review, the shorts must stay up around your middle.
Or bad things can happen. Things like, your shorts falling down in front of your friends.
Or your mother.
Either way, it’s not good.
Or socially acceptable.
And someone cries.
Usually, me.
Lord God, shield my child’s heart from the cruel misunderstandings that follow him in his Autistic tendencies.  Shield my own heart, and the hearts of the many mamas and papas who are doing their level best to raise these children You’ve blessed us with.  In Jesus’ name I pray, Amen.
Also, every picture you’d ever need, and then some, is available for free at www.do2learn.com  It has been an invaluable resource for us.  Maybe it will help you too?
Today’s post is from dear, sweet Missy.  You can find Missy writing anonymously about the mishaps of daily life with an Engineer, a child with an Autistic Spectrum Disorder, and a preschooler who’s convinced she’s 14.  She is a Southern transplant living the dream in the New England area.  The mishaps are a’plenty.

My child is a screamer.

My child is a screamer.

Please don’t judge me.

HI! Have we met? My name is Elissa, and I’m the Mama to 4 beautiful children. Three have been with me from the beginning, and my youngest was adopted at age 7 from Russia.

It’s not clear exactly what happened to our youngest son before he joined our family, but a special recipe of neglect, trauma and abuse has left our nine year old functioning at the developmental level of a four year old, both cognitively and socially. He doesn’t do crowds, he doesn’t do stores, and he doesn’t like it when life deviates from his picture schedule.

As his adoptive mother I’m new to this whole world of special needs parenting. It took me longer than I’d like to admit to figure out that my new son’s temper tantrums were fear based, not orneriness. I’m still sort of trying to figure out what will send my son into panic mode. It’d be so much nicer if my son would come to me 10 minutes before he had a meltdown to tell me “Mother, I’m simply over stimulated by the options at the grocery store today. If you would like to avoid having me throw bananas at you, you’d be wise to take me home soon.”

Yeah, that doesn’t happen.

I’m the one with a screaming kid in the checkout line. Fortunately my little guy is the size of a six year old so I get a slight measure of grace from curious onlookers. But mostly I can feel their stink eyes burning into the back of my head. Their judgmental thoughts echoing in my psyche,

That boy is too big to be riding around in a buggy. Not to mention throwing a tantrum.

Can’t she keep that kid quiet?

Just give him your phone and shut him up already. (So he can throw it across the store? I think not.)

I hear these sentiments because I have thought them myself. I have callously assumed the screaming kid on the next row was just being ornery to get a treat. I have also assumed that his Mama was too lazy and self centered to make him get his act together.

Oh sweet Jesus did I really think these things about other women? How could I have been so judgmental? Thank you Jesus for bringing my new baby to me to help me be a better Mama. A less judgmental Mama. A Mama ready to link arms with those other harried Mamas in the checkout line and do our best with what we’re given. 

ElissaElissa Peterson is a slightly off kilter Mama to 4 who likes to pretend she has her act together. She writes about the joys of dancing through life with a very special 9 year old glued to her hip on her blog: Don’t Let Life Pass You By.

 

He chose you.

Girls in pretty dresses with their dads.

THIS. An absolute beautiful vision to see.

It started as a thought and led to an event — turned backwards in my movie theatre seat I exclaimed to Josh Bishop, youth pastor of our fifth & sixth grade students at our church:

Let’s host a daddy-daughter dance!!

And that was that. He agreed. We were going to plan an evening for daddies and little girls to connect.

And we did. And it was lovely.

The night included a spaghetti dinner (spaghetti is great on the event budget, by the way) and swing-dance lessons (a priceless sight to see!).

There was a moment, during the spaghetti dinner, where Josh welcomed folks and chatted a bit about the special relationship between a father and a daughter.

Then he said this:

Dads, you didn’t get to choose your daughter; her personality, her passions, her strengths, her hopes and dreams. You didn’t get to choose.

Girls, you didn’t get to choose your dad; how he will love and care for you, how he will pursue you, what he loves to think and do. You didn’t get to choose.

He continued to say:

But! everyday you get to choose to love each other. 

We try to control our children.

And our children try to control us.

Some of us would like to think we don’t try to control our kids, but control can be as simple as wanting them to color Cinderella’s hair yellow — because Cinderella is a blonde! But maybe they grab the purple crayon? And in this moment, do you push the yellow or do you let Cinderella show up to the ball with purple hair – sassy and full of spunk!

Control.

Or choosing unconditional love.

It’s a choice.

Everyday. 

Some control is natural, normal and we’re even called to discipline and raise our kids. We’re supposed to mold and shape them. But our children are also a very specific and special design of God’s own desire; to be watered and nurtured to grow into the best version of who they were created to be.

If ever you feel like maybe perhaps your child is different than you wanted, it’s okay.

Go ahead and say it. This may give you permission to actually see who they really are.

If ever you feel like you would have maybe chosen to write the story a bit differently, it’s okay.

Go ahead and say it. This may actually give the vision to see outside your plans.

….

My mom has led a woman’s retreat for several years at her church. One year, there was a mom who had three children, all of who have special needs. The condition they all have is something where symptoms didn’t show up until the children were a bit older so they had the three children before they knew it was gentic.

At the retreat the mom shared:

You know, for years I wondered — God, why me?

Over the course of the weekend God whispered gently and quietly to her heart:

Who better to raise them?

In parenting, there will be difficult moments; these moments will be: disheartening, disappointing, . and full-out heartbreaking.

And we wonder why.

Why us?

Why them?

To those of you who today are wondering why?

BECAUSE, WHO BETTER THAN YOU!

Everything you are and everything you have to offer is exactly what your child needs.

In fact, of all the women in the world God choose you: your personality, your temperament, your strengths (your weaknesses!),

You didn’t get to choose.

Your child didn’t get to choose, 

But God did get to choose

… and he chose you.

 

• Kaylee (and husband, Dan) have one daughter, Miss Bella, who lives in a world of FPIES,EoEDelay in Gastric Emptying.  Kaylee works full-time at Start Garden and fine-tunes plans to take over the world while driving to doctors’ appointments. •

a recipe for making happiness (maybe)

jillianfrom (in)Able’s Jillian Swanson
Most of the time, I stamp myself with the “epic fail” label.  And if I were to place bets, I am not the only one.Most of the time, life is a disaster.  My home is a giant mess.  Every nook and cranny covered with the trappings of life itself.
My head is in need of emergency disaster relief.I use the scary mommy voice WAY TOO MUCH.  I rarely play with my kids.  I can’t keep up with my household duties.  My budget is in disarray.  I can’t find the courage to find a new home for my dear cat who sleeps with me at night, but is so obviously stressed and unhappy.  Dinner is always late, and as of late, a complete fiasco as I try to figure out what to feed an allergic child.  I am sleep deprived and not remembering to feed my own body.  I am lucky if I make it into the shower more than twice a week–something I swore I would never do as a mom.
I am barely meeting my children’s needs.
My husband’s needs.  
My own needs.  The lucky me who is blessed enough to stay at home with my babies, fails every day at the job God gave me.  And I am so very aware of my failings as a parent.

Certainly not a recipe for happiness.

But, maybe it is…

My loving, sweet first born AJ, is super observant, sensitive, and reactive to household energy shifts.  And now that he is entering into the fours, and perfecting his terrorist tendencies, he is a regular receiver of my frustrations.  The other day after a particularly hard day, he turns to me, pats my leg in a comforting gesture, and says,
“Mom, you make me happy.”

What?!?!
How is that even possible?

I looked around the room.  Nope, still a mess.  Momma’s in pj’s with yucky hair.  Two of three kids are diaper naked (only in diapers.). Dinner was a leftovers free for all. I had commandeered the TV in an effort to wash away the massive rock of guilt sitting on my shoulders.  I had spent the better part of the day pseudo-yelling at the lovely beasties for any number of infractions.  I could have gladly taken Oscar’s garbage can and taken his place as resident crab on Sesame Street.

And this makes him happy?

A few days after that, I started this blog, after a morning of feeling like I was being bodily dragged to the computer.  And I started thinking about his comment to me.

I talk to him.  When the days are bad, I am honest with him about why, about how momma feels and why.  That it’s not his fault.  In my anger, I almost always keep gentle hands, so that even in the swirl of chaos and raised voices, he feels my gentle touch and still feels loved.

And what I do well, I do really well.
I rock the cuddling thing.
I say “I love you” in some form, constantly.
I am a great tickle monster.
I work hard on praising the good things he does and reminding him how proud I am of him.

And regardless of my panic and frustration with daily failures, his basic needs are met, and then some.  He’s fed, clothed, and in a warm house.  He has an over abundance of toys.  He sees his friends at school and receives the therapy he needs to grow.  He knows his parent love him and sees and hears how hard we work for him.  He loves his brothers and receives their love purely.  We fight for him and that which he deserves.We try to be there for him in his mess.etc…..

He doesn’t see my failures.  He sees and feels my love for him as it pours off of me in my tears for failing him.

And for him, that is enough.

The recipe for happiness.

And I spend every moment now convincing myself that’s enough for me.  Rewiring my mind and opening my eyes open wider to see the minute miracles mixed in the wearying day to day battles, and reminding my heart to accept the teeny, tiny, micro-sized blessings that float in the air around my own mess and take them into my soul.

To quiet my sadness and find the hidden joy.

My sweet, beautiful, crazy smart, broken little boys make me so happy with their little arms and hands holding me.  With their little voices and little hearts loving me.

All this given to me simply because I love them.

For now, it will be enough for me.
That is of course, after I silence the nasty enemy voices in my head… :o)

Care to join me?

with much love,

Jillian

from a mom to her son

mariaA Letter for my Son with ASD

written by Maria Dodson, (in)Able mom

April 5, 2013

Dear Sweet Boy,

Right now you are only 6.  You just started at a new school a few months ago and it has really been a challenge for you.  You are often very anxious about going to school in the morning. You say that you can’t read or write and that you have a hard time listening.  And that frustrates you .

Sweetheart, you are right.  You are behind your peer in the language arts right now.  In fact, your delayed language skills often prevent you from asking for the help you need or accurately communicating why you are frustrated. And it breaks my heart to see you struggle in this way.  Communication is a basic human desire.

But maybe I can explain why your Mama is making you go through this.

Son, because of the way your brain works these things are extra hard for you.  It is my great hope (and the advice of professionals) that if we work REALLY hard right now, things will be easier for you when you get older.  I make you go to school, where you are asked to work very hard all day long, so that someday you will be able to tell people your story in a way that will make a difference for the kids that will come after you that struggle in the same way.

And I want to give your teachers and schoolmates a chance to learn that you are different from them, but not less.

I know you will not understand this letter right now, but it’s good for your Mama to write it out.  It reminds her, too, of why we do what we do.

You are a great treasure, my sweet boy.

Love,

Your Mom