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.
 
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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.

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

church and our kids – 2

[a follow-up to yesterday’s post, by Sandra Wood Peoples]

I sat in the waiting room while James was in the back for his speech therapy. Most weeks, the other moms, siblings, and I all stay busy with the variety of electronic devices we bring. That day, however, I decided to be brave and start some discussions. We talked schools, doctors, and finally, church.

“I’ve read 90% of families with special needs kids don’t go to church. Do you guys think that’s true?” I asked.

The others moms nodded their heads. They all talked about how hard it is to go to church. One tries to have her son sit with her in the service, but he makes lots of noise and she’s afraid of disrupting others. Another mom said her church has a very loud children’s service and her girls can’t handle all that sensory input. Every one of the moms in the room had reasons not to go.

Let’s be honest—it’s not easy for families like ours to go to church. Most families have a list of excuses why they can’t make it to a worship service, but special needs families have legitimate reasons. But the New Testament talks about the importance of meeting together. The book of Acts gives stories of early churches, the Epistles are written to churches, and even the book of Revelation has praise and warnings for churches. The Christian life is to be lived in community. If we stay home, we are not only hurting ourselves and our families, but we’re also hurting the church, who needs families like ours to be complete.

When we first got James’s autism diagnosis, he was the only special needs child at our church. Because my husband is a pastor, we couldn’t just stay home each Sunday. We also couldn’t shop around for a megachurch that already had an established special needs ministry. We knew God had us at our church for a reason, and that reason included introducing them to the world of special needs.

Now, over two years after his diagnosis, we have a strong special needs ministry. Our church has an occupational therapist and a special ed teacher who stepped up to head the ministry. We offer respite nights every two months for kids with special needs and their siblings. We integrate kids with special needs into our Sunday school classes, Awana program, and Vacation Bible School. We continue to train volunteers to ask about food allergies, know the signs of a seizure, and modify lessons so every child can participate.

It hasn’t been an easy two years. It took a lot of patience on our part. It took a lot of prayer. As James grows, I know we will face more challenges. But I also know God wants us at church, so He will continue to help us find ways to make it happen.

Sandra Peoples is a pastor’s wife and mom to three boys (one with autism and one they are in the process of adopting from Ethiopia). She is the author of Speechless: Finding God’s Grace in My Son’s Autism (available on Amazon). You can connect with her at sandrapeoples.com

church and our kids – 1

We walked up to the registration area for the children’s classes last Sunday at the church we were visiting with our boys. The woman there asked questions to figure out where the boys should go and typed the answers into her computer.

“What are their names? When are their birthdays? Do they have any allergies?”

The questions were easy to answer for our oldest son, but our younger son took more explanation. His birthday does not represent his developmental stage. The computer doesn’t take into account all the variables that would tell the woman where he should go. “Can I type in that he was born in a different year? Would that work?” she asked.

I’ve read that based on the 2000 census, two out of every seven families in the US have a family member with special needs (ranging from autism to Alzheimer’s). I’ve also read that 90% of families with a member with special needs do not attend church. That is a huge “people group” who aren’t being reached.Churches must be able to meet the special needs these families have before they will be able to address the spiritual needs. From what I’m seeing and hearing in the special needs community, churches are working hard to make sure people with special needs are comfortable and safe. I’m thankful for websites like The Works of God Displayed  and The Inclusive Church that are equipping churches of all sizes to be more inclusive.

Churches have a responsibility to meet the special needs of families, and these families also need to take steps to let churches know how they can help.

Here are a few steps we take when visiting a new church so it’s easy for everyone:

  • Call or email the church ahead of time to find out who is in charge of children’s ministry. I use language like, “We will be visiting your church Sunday and have a child with special needs. Who can we contact to make sure our visit is as comfortable as possible for him?”
  • Contact that person directly to let him/her know your family is coming and what your needs are. It allows that person to contact the teachers or volunteers who will be with your child so they can prepare. For example, if your child has an wheat allergy, they can get the pretzel snacks out of the room before you arrive. Also, if your child is older, he may not want to hear his special needs explained in front of him to multiple people. Doing this ahead of time will save him embarrassment.
  • Get to church early enough to know where to go and meet with the person you contacted, if necessary.
  • Bring anything your child will need, including special snacks or sensory toys. I packed James’s back-pack with diapers, extra clothes, and his chewy-tubes.
  • Be honest. Don’t let embarrassment or nervousness keep you from telling those who will be caring for your children what they need to know.

The church we visited did a wonderful job making us feel comfortable and taking care of James. When I picked him up after the service, the teacher in his class asked, “He loves to be tickled, doesn’t he?” I appreciated that they got to know him and weren’t afraid of his lack of communication or special needs!

Sandra Peoples is a pastor’s wife and mom to three boys (one with autism and one they are in the process of adopting from Ethiopia). She is the author of Speechless: Finding God’s Grace in My Son’s Autism (available on Amazon). You can connect with her at sandrapeoples.com