Together

My kids are nearly 13, 11 and 8 and quite honestly, I thought I would have it together by now. The day would tick tock by in its exact 24 hour segments and I would partake of each moment with grace, punctuality, craft and wisdom.  My morning prayer would happen at precisely 5 am and I would welcome a brisk walk at 5:30 with a September fire orange ball rising in the sky to kiss my cheeks good morning.

The morning shower would wash away any hint of dirt as I slipped into crisp, clean linen, while my kids got ready for school all on their own... evenly clad with smiles and uniforms and lunch boxes and LL Bean totes....while I turned on the engine and drove their precious souls off to school.  I would sip coffee as I did what every suburban homemaker does across America..... leaf through Martha Stewart's Living or make curtains for the living room or organize a shelf...or bake an apple pie and have it cooling after I picked them all up from school. They would squeal with delight at the smell of it.  
And etcetera.


Today I made the 13 year old come with me to Costco so he could wheel his 11-year old sister around in the wheel chair while I gathered groceries as fast as humanly possible with the 8 year old balancing on the end of the cart.  It would be a quick trip to pick up essentials. Well, as soon as we took June out of the car, I heard the first warning signal...a slight whimper that said, “I don’t want to be here. This isn’t a good idea.” I had the choice right then to just go home. Maybe I should have...but...we have to eat. And Costco is a 20 minute journey....and that’s an eternity for someone who lives in Norfolk.

So I slung her in the wheel chair and made our way into the store. It started off on the fringe...but with each aisle, the cries grew louder and louder and by the time we were near the musical snowman, my 13 year old was done glancing at me nervously and told me 

We really need to get outta here...

Something we all knew. 

Just a few more items ...we are almost half way through...

I managed.

On to the meat section and I was ignoring people parting the Red Sea for me, eyes forward, like a marching drill Sargent, goal set on the cherry tomatoes.
By the time we got to the frozen section, June was hysterical. I kept handing the 13 year old the keys to the car, and he kept tossing them back claiming that Costco was a prison and there was no way to escape without a receipt....

and I knew he was kinda right.

So we whipped through and grabbed the Cheerios and dog food, and stood in the line.  By now I visibly had old people stopping dead in their tracks and staring...just taking in the show...other people were strolling by casually...clearly checking on the disabled child on aisle 23 whose mother had lost her ever-living mind.

Somehow we rallied and slid through the line at the speed of lightning and headed to the car with all the produce balanced upon boxes balanced upon boxes. The cashier never cares about crying children. That was one plus to this mess.
Got to the car and hefted June into her seat.

And then. Like the last puzzle piece in.
She instantly stopped crying.
As I breathed a sigh of relief, and squinted my eyes at the sun, an old man hobbled toward me, a giant gold cross hanging around his neck. 

Staring at the cross, and with the kindest eyes I had ever seen, I watched him open his mouth:

“We have two grandchildren with autism. And it’s hard.”

I couldn’t believe how those words undid me. And I kind of stood there with my mouth open, pondering the gold cross, the moment, the warmth of the sun...and I could have stayed there for forever.

He could have stopped at the word hard.
And that would have been enough.
That he acknowledged hard.

But instead he asked our names and he told me he was a man of faith and was going to pray for us.

And with that he walked to his car.

And I walked to mine a little straighter, a little more together, and with a brimming cup of extra patience which somehow lasted the evening.  

Sometimes it all comes together.

...but first let's get some clothes on.

Well my last post back in March was so extremely positive, that I thought I needed to bring it around full-circle here in July and tell everyone the honest-to-goodness truth.  Things are SO COVID around here that my 11-year old swims naked in our backyard BIG-kiddie pool most of the day.  My 12-year old thinks it's completely normal to stay up til midnight watching Hogan's Heroes on a Wednesday, and my 8 year old may or may not have published her own you-tube channel in which she gives tips on how to interact with strange children or cute dogs.

If you're like me, the following things have happened:

1. Your vacation gets canceled not once, but twice.
2.  You've googled "counselor who specializes in ________ near me" at least a dozen times.
3. You have bought a giant kiddie pool with a filter for waaaaaaay too much money and you think you're a chemist because it hasn't turned green yet.
4. You visit the grocery store to browse the non-edible section and suddenly containers of all shapes and sizes interest you, along with Crayola’s new metallic markers and floating animal pool toys.
5. You have not ONCE bought lipstick.  Or mascara for that matter.  In fact, you’re positive that your lipstick company is going out of business.
6.  You have at least two bags of library books and DVD's sitting by your door gathering dust and waiting patiently.  They are not talking or bickering.  You actually kind of prefer them to your children.
7.  You have stocked up on gin.  And you are not telling how much.
8.  You have now sold most everything in your house on ebay or Poshmark.
9.  You buy 3 gallons of milk and 3 jars of peanut butter every time you go to the store.
10. Your dog now thinks he is a person. And your chickens think they are dogs.

Tonight we decided we would part-ay!  All 5 of us...And so we suited up, turned on the dub-step, and made our grand entrance into the pool.  It was super warm....I couldn't even tell when I had entered the pool to be honest.  We had so much fun that we didn't even realize our silent child had puked in the pool....or had gotten naked for that matter-which is a normal occurrence....which brings me to the biggest COVID struggle of all...

Our Bug wants to be naked at all times.
And it's hard.  It's not cute anymore. She's 11.  And going through puberty.  And she has things that shouldn't be seen by everybody, everywhere...even in our backyard by the neighbor boys and the cute couple who tolerates our shenanigans just over the fence...

The other day we were swimming at the beach and I was up on the sand chattering with some friends, and here she comes....streaking out of the water in all of her glory for all to see....Fortunately, I have a slew of friends (thank you!) who took action to help charm her back in the water, call me, and search for her bathing suit...One lucky Dad found her bathing suit underneath his toes and graciously tossed it in our direction as an offering of decency...and we were saved once again.  This is not the first or the last time this has happened.  The one pro is it sends us all to mass hysteria and giggles like we are in middle school again. 

June has also become more obsessive, and this has been harder than one would think.  She will climb out of the pool (naked) just so she can move the hose 3 inches to the right, or the toucan float upside-down, or take all the towels and throw them on the ground.  TOWELS AND BATHING SUITS MUST BE ON THE GROUND AT ALL TIMES.  I have stopped cleaning up the back porch, because she has to throw all clothes and all laundry baskets on the ground. So it might as well stay a dumping-ground until I can wash and fold it.  Every door and drawer must be shut. Every light must be turned off.  And she is obsessed with the PEANUT BUTTER.  It goes on everything and if it can't go on everything, when we are not looking, she screws off the top and dips her entire hand in there and digs out a fistful and stuffs it in her mouth like we are not feeding her.  All her toys in her room must be off the shelves and on the floor, but the tub toys must be all in the basket, and the basket must be perfectly lined up against the wall.  She can't leave the bathroom until the toilet lid is shut, the light is off, the stool is lined up perfectly,  all diapers are in the hamper (why? they go in the trash) and the bath mat is in its proper place.

The OCD or the COVID is going to kill me.  I'm just not sure which one.

And when my husband gets home at night, I want him to put the girls to bed.  Because I can't take one more single-solitary OCD action.  I learned tonight in my marriage class that I'm supposed to say "I can't".  So I'm saying it.  I can't.  But maybe it's more that I don't want to.  OCD is so boring, and being naked is sooooo over-rated.  I have to admit I just want normal. And here we are again, because normal ain't happening.  And the truth is, I smile and laugh when people talk about the diaper stage and the poopy smearing, but deep down inside, I want to blurt out all the truths under my tongue that make me a horrible person.  Really, I want to curl up into bed and read myself into my dreams and stay there all night and fast-forward to the fall because....then there will be a schedule...then someone else can deal with the mess yet I have no idea who would feel called to this job, or who would sign up for it...but she signed up!  She's here.  And I wonder when I will lose her because I lose them all eventually...because this isn't a job for the rich and famous.  It's not glorious.  It can be boring, hard and zap you of all your energy reserves to chase around an elf with antics.

 I remember the doctor said to me years ago...."They did this study where they took all the parents in a room who had children with "special needs" and asked the parents which "special need" they would rather handle in a list of "special needs".  Well my doctor said that most of the parents actually picked their child's special need because that's what was familiar and what they knew how to handle.

You know which "special need" I would have picked? I'm embarrassed to say.  Because a gift was entrusted to me, and what I do with it can be destructive or loving...but I don't always choose loving.

Sometimes I destroy.

I am thanking God today that He can refine and purify all the things destroyed in fire. In my fire.

May I love well.
Even during a pandemic.

"Remember that when you leave this Earth, you can take with you nothing that you have received-only what you have given: a full heart, enriched by honest service, love, sacrifice and courage."

-Saint Francis of Assisi

Cape Charles, July 4

Normal

The day after school let out I sacrificed my summer to the doctors, therapists, nurses, pharmacists, and counselors of Hampton Roads.

It literally happened over night, in an instant.

And while I can't tell you that story, I can tell you that it's been isolating, lonely, and for an extrovert like me, a game of carefully walking a line and balancing my friends on a tightrope so I don't go crazy.

Today I literally spent 8:15 am  to 3:00 pm dealing with medical or insurance issues.
L-i-t-e-r-a-l-l-y.

I made my kids' lunches while I sat on hold for the 17th time with another doctor's office.
I cursed the answering service under my breath as I smeared the last tablespoon of peanut butter onto an organic wheat piece of bread.
And then I called someone else, held my breath.
And hoped they understood my plea.

I do not cry anymore.  I don't have time to.

The menagerie of bills, toys, artwork and forms on my kitchen counter has become more than embarrassing and tonight I rallied and made some order to the seemingly ending chaos, polishing the black granite shiny with a rag.  I may have rubbed a little too hard, I am not sure.

My attendant asked me today if I like being a stay-at-home mom and I almost choked.
"No," I thought.
 But instead, "I don't love it in the summers," slipped out.

The other day I was walking with my kids, June strapped into her special needs-stroller.
I was at the beach by myself with these little people.  Which is a miracle within itself.
Some guy says, "Aren't you too big for that stroller little girl?"
I looked at him, pursed my lips and let out "Hmmmm."
Because I was contemplating him. And contemplating my life.
Because I didn't have the energy to sock him across the face.
Because he's right.  I have a 9 year old in a stroller.

And sometimes my 10 year old takes care of her as his "chore".
And lately it's been my 6 year old.

I am sorry if you have called me and I have not responded.  I am on auto-pilot.

If you didn't catch it up there, I have run out of peanut butter.  That never happens.

This too, shall pass, but the unfortunately the passing is taking too long.

I told God yesterday "I thought you just wanted my Summer".
And I think He whispered back, " I want all of you."

And as if I thought it was enough to have just one child with special needs, I am coming to the realization that I may have two.  Matter of fact, I am certain my entire family is some kind of special.

I have accepted it.
But I can't move on.

I'm sorta stuck.

I wanted the other family.
The normal family.

God, would you help me love my new normal?

I like you

I shouldn't be writing this.  It's the dead of Winter and everything seems...well, dead, or dying, or sick.  I'm just your average mom in the USA who hasn't left her house much because just when we get done circulating one sickness and I can breathe again, the school nurse calls me and tells me to high-tail it down there to pick up a crying child.  Or, (God bless her), my son's friend's mom called me to tell me my son had puked all over her living room carpet.  And me-well, I don't have time to be sick, but unfortunately, I had to make the time and also unfortunately, my toilets, my sinks, my floors, my drawers and my husband have all noticed as well.  How many times does one become bedridden without becoming depressed?

 I certainly have an appreciation for those of you out there and bedridden and sick for forever.  I'm sorry.  I'm sorry you have to go through this flu, this sickness, this cancer, this old-age thing.  I'm sorry there is not a ray of sunshine shining through your window right now.

Honestly, I've been super thankful for the Olympics, Disney, Adventures in Odyssey, the actual onion-thin pages of the Bible and the creators of This is Us for the last couple months.  Thank you for helping me get through this season.  Oh, and the book, Hillbilly Elegy.  If you haven't read it, you should.  If you like true stories.

Which brings me back to Disney.  And my June-bug.

It all started a couple weeks ago, when, in between sickness, I went to observe June in her classroom.  I usually do this once a year to check out her situation, since she can't really tell me what's going on at school.  Usually she ignores me completely while I sit at the back of the class.  I usually see her happy at circle time, steal a kiss, she wipes it off, then I leave.  I breathe a sigh of relief that things were as good as I had imagined.

Well, this time was different.  Upon entering the classroom, she turned completely around in her chair and stared straight at me.  She kept giggling like the secret was out.  "Guys. My MOM is here.  Can you believe it?"  She kept making eyes at me, and while I was trying to ignore her, I really sat there mesmerized and in disbelief.

She notices me I thought.

She likes me.  LIKES me.  I can't even believe it.  My 8 year old likes me!

I grabbed her little cheeks and looked her in the eyes and said
Mommy sees you.  And I like what you are doing here.  Thank you for having me in your class.  
I love you.
And I walked out of the classroom.
And she didn't follow me.  She sat in her little chair in the circle at the front of the classroom because that's what little third graders do.

A week later I was watching Frozen with my 5 year old. We were both sick and snuggled up on the couch.  All of the sudden June came barreling into the room and squished her body right next to mine and put her hand in mine.  I was startled.
Oh!  You want to actually watch a movie with me?  
Okay....well this has never happened.... 
And she watched the entire second half of the movie with us.
On the couch.
With her hand in my hand.
She kept looking up at me and smiling as if to tell me
Mom I like you.

I know it doesn't seem like much to some of you.  But this is HUGE for our family.  We are not your typical family that sits down and watches a movie together while mom and dad lay there zonked.  It simply doesn't happen because June doesn't care to or doesn't have the attention span for a movie.  And not that she will for every movie, but this is a small window for me into learning that she is growing up just a little, and if we have to watch Frozen once a month as a family, we will.
Because it feels so normal.

This morning my 5 year old handed me a slip of paper.  And I almost cried.

Do you?
Do you really?
Because
In between the
Iloveyous
hugsandkisses
Momineedyous

It sure is nice to be liked.

June's new happy spot.  I like it.

Walk away

The day started early like it normally does.  I was up at 6, tip-toeing around the house getting ready, frying up my eggs, packing my bags.  I was even more quiet than usual because I knew not to wake up my June-bug quite yet.  Little did she know she was on her way to getting six teeth extracted at the hospital and she wasn't going to eat her fancy breakfast this morning.

As quick as a blink I got her ready, whisked her downstairs, avoiding the kitchen, hoping she wouldn't notice the pantry when she broke down in tears and collapsed on the floor because she couldn't have her bless-ed honey nut cheerios.  I kissed her, smoothed her tears away, told her we were going to see a doctor, buckled her up as she was thrashing and protesting. 
Over and over between prayers, I chanted, 
"Katie just drive the five minutes to the hospital.  
You know she'll do better once she's there."

And I was right of course,  because CHKD sure knows how to make everyone feel all cheery at 7:30 in the morning with their bright lights, bold colors, see-through elevators and swishy fish.

Well I wasn't really prepared for all that was to take place. 
My heart, that is, wasn't prepared.  I really didn't think it was that big of deal.  
She's going under.  
And getting 6 teeth extracted. 
And 3 sealants and a flouride treatment.  
2 hours of recovery.
And then we will be on our way.

I'll even get a coffee at Starbucks.  It will go fine.

So we stripped her down, put on some adorable mini-scrubs and set her up with an ipad and waited...and waited some more.

Then they came in and explained everything and asked if she needed a sedative before they walked her down the hall and I rattled off, 

"No thanks-she doesn't have stranger anxiety."

And then they held her hand and took her away.
Just like that.

I watched her walk the super long walk down the hall. I just sort of froze there by the patient family waiting room.  She walked like a big girl with all the grace and confidence in the world.

Walked through two double doors.
By the nurse's station.
And as she walked through the second set of double doors my eyes welled up with tears and I stood there in a puddle.
Watched as she vanished around the corner.

"Are you going to turn around and look back at me?"  I thought.

I'm probably the only mother in the world who watches her daughter walk a hundred steps just because she's walking.

I gathered myself and went downstairs, grabbed a coffee, came back up and rounded the corner and there she was-

A mother.  Standing in the same spot I was, watching her little one walk the walk.
Tears streaming down her face.
I smiled bittersweetly and said, "Yeah-I just did the exact same thing."

And then it hit me like a ton of bricks as I sat down.
I wasn't expecting tears and I started thinking about why it was that I was crying.
Was I scared? No.
Was there an unknown outcome? Not really.
Was June going to be in pain? Probably not.

I was crying because I was watching her walk all by herself.  
Down the longest hallway I had ever seen.  
I was crying because I knew she wanted to tell me something but couldn't.  
I was crying because I was wondering if I let her go and let her keep walking, 

WOULD SHE JUST WALK AWAY?

Walk away.

Wander away to the the glimmering sea where the dolphins play and the mermaids swim.
Where the sun is hot
And the waves pound your flesh against the soft white sand.

Does she know who loves her?
Does she care about our home and everything we do to make her comfortable and safe?
Would she miss us if she got lost?
Would she smile if we found her?

And I didn't know.

And I don't know.
Would she just walk away?

January snowstorm 

Maybe the question is-
Would she come back to find us?

When peace doesn't flood your veins

Well I have to admit I'm sad.  So sad for June bug.  And I would get close to her face and whisper in her ear but she won't let me.  Last night I tucked her in bed, like I've done for seven years and whispered a prayer close to her face as she was shutting her eyes in her medicated way.., and for the FIRST time ever, she reached out and grabbed my face, clawing at my eyes and my forehead, leaving a scratch, a scratch that says,
"Something is wrong. Get away from me. Leave me alone or help me."

So what does one do?  For the child who has been mute and sleepless, clawing, pinching friends, sisters, and teachers during the day, almost laughing, as if no conscience, as if no mind. 
I do not know.

Except start again.  Back to the basics.  Where she was once good and partially happy.

So we are back here dancing with the medication game, where we do not know whether medication is necessary or helpful, or evil, or a cover-up.  We want her free to roam, free to be curious, not a drugged zombie with partial rights, partial sounds, tainted movements.  I can assure you we hate it.  The medication game.  I'm so desperate I ordered the ever-so-controversial Charlotte's Web hemp oil.  Maybe you will be calm.  Maybe you will rest your flailing limbs.  Maybe you will learn to say "Mama".  Maybe, just maybe you will sleep through a night without waking up half-way through searching for something sensational, extraordinary, other-worldly, angelic. 

Come back to us June bug.  While I"m packing our bags for our vacation to Kentucky, come back.  I wish I knew what you were upset about, why you are crying, clawing at my eyes, hitting yourself, pinching your caretakers.  Show us what you need.  We love you.  The God of the Universe loves you. And He knows your needs.  This is the one truth I take and put deep deep in my pocket.  So I can reach in and pull it out at 2 am in the middle of the night when I'm stumbling to your bedside, and at dinner when the bewitching hour comes and tries to steal our joy, and when you reach out and grab my face a little too hard just before you close your eyes in a deep, medicated trance.

Lord Jesus bring balance to this precious girl's system.  Heaven come to Earth.

The Sensational 7th

Dear Iva June,

Whew!

It's time to clear the air-
Literally.

That last post wasn't really fair to you, was it?
You are much more beautiful than that.
And really-you couldn't have told me you don't like that picture of yourself
because you can't.

And so, I am asking you for forgiveness, BUT,
I won't take down the picture.
Because it serves as a reminder to us of where we have come 
and where we are going.
Both of us.

Because we're both on this journey-
You to speak.
And me to speak less.
You to lead.

And me to be patient.

And that's really hard for me June bug-to be patient.
Like REALLY hard.

But here we are...another year into it-
And today I celebrate YOU!

It's your birthday and you are SEVEN!
So you needed something kind of SENSATIONAL!

Pool filled with Water balloons, squishie balls, body foam and bath bomb

Water table filled with colored cool whip, frozen blueberries, pop rocks and cotton candy

Maybe heaven?

Layered ice cream trifle

Because only something cold would do for the birthday girl

Sweet Girl,

May your year be full of sunshine, shiny balloons, splashing waters, sweet watermelon, sprinklers, laughter, bathing suits, honey nut cheerios and popsicles.

And may you know just
how high,
how wide,
how deep
is the Father's love for you.

Birthday present: Kryptonite body suit

Sometimes you are done.
You are done
screaming
jerking
swearing

You are done with this situation.
You would do whatever it takes to make it go away.

And so it happens again and you really know you are done because
all of a sudden
you are watching yourself do what you thought you could never do.

It is an out-of-body experience.
A gift from God, really.

You breathe in, and somehow-

calmly
patiently
efficiently

you get it done.

It is not you.

Finally, it happened for me.
Tonight it happened.

It was the LAST straw.
But the FIRST time I could actually love her through this moment.
It was the last time I would find my nearly-7 year old covered with feces smeared all over her body.
And scream with disgust.

For the 187th time-
I cleaned up the mess and scrubbed her little body with grace.
It wasn't me scrubbing.
I was watching myself scrubbing.

As much as I love this girl, I hate this habit.
And so I had to show you.
So you can pray for me.
I'm even okay with you feeling bad for me.
And honestly I can't believe I'm showing you this picture.

And so,
this precious girl, who turns 7 on Monday
is not getting Princess clothes
and Barbie dolls
and Pretty Ponies for her birthday on June 6.

She is getting a backwards-zipping full-length Kryptonite Body Suit.
Maybe she is even getting 7 of them.
Because she is turning 7.

Crossroads

This morning I sent my first-born baby girl off into the unknown world of Kindergarten.  She woke up early like she had been waiting for this day all her life, gobbled down her usual breakfast of oatmeal and waited patiently on the porch for the bus....

Like she knew exactly what was coming. As if to say, "Yellow bus, where have you been for the entire summer?"

And here she is with her cute outfit and same-old, same-old backpack and matching lunch box for the third year in a row....because I am one of those Moms who refuses to buy a new backpack every year.  Or maybe I should say, I GREATLY resist the temptation to buy a new backpack, because when Pottery Barn Kids and Hanna and Garnet Hill Kids catalogs shows up on my doorstep, I can assure you June and I pick out a new backpack in our heads. 
Every year. 

And so June got on the bus with great ease and I about cried because her bus driver and the attendant were so nice and she had her own little princess seat while her wheel-chaired fan club in the background sort of smiled and nodded sweet and gentle gestures her way.

So we quickly sent off big brother James and got Char out of this ridiculous white onesie (which she always seems to be wearing every morning lately) and were on our way following June's bus to school.  And of course we passed a thousand buses and Char assured me that June was on every single one. 

James, First Grader this year, Charlotte, pre-school 2 days a week. NOT in that outfit.

And we arrived at Crossroads Elementary (K-8 in case you were wondering) and my friend Kat said, "It looks like a big school for a very little bug..."

The word Crossroads means: a point at which a crucial decision must be made that will have far-reaching consequences.

And yes, it was BIG, but to me, it looked like sunshine, and fun, and everything wonderful and academic tightly wound in a colorful candy wrapper. And I watched her get off the bus, walk her way to her classroom confidently, with her precious teacher and two attendants, and I secretly rejoiced because I felt like June was the lucky one this year. Or maybe she was placed here, in this school, with these teachers by the Almighty Loving God of the Universe.
She is going to LOVE it here.

Seven new friends

But first...these lines on the carpet.

This chart below pretty much sums it up.  Yay! for happy days.  If somebody can tell me what "try harder" means in a room where most of the kids are disabled, let me know. ;) I have my theories...


Happy First Day Friends!!

And now on to other things...Like potty training this joyous firecracker as she potty trains her doll.  Mercy.

Rise Up

A year ago my friend gave me a phone number. She said, "You need to call this woman. She has a daughter who reminds me of June."

I wrote the name and number in my journal and said I'd call.

A few weeks later, she asked me if I had called her yet.

Again, I told myself that I really should call.

I never called.

Yesterday I learned of the tragic events of a woman in Norfolk who took her own life and then took the life of her daughter, ending it all. All the pain, the misunderstanding, the grieving over what could never be. All the back-breaking moving of a body, the emotional planning, the Super-Mom facade. Gone.

This woman was the woman that I didn't call.

I sobbed almost immediately when I heard the news. Not because of guilt. But because the whole story was much too close to my heart. Because I never did meet her. Never shared a moment of understanding with her. And I knew she was a woman probably much like me. I knew she went to church, had friends, seemed happy and put a smile on for the general public.

I am assuming a lot here because I don't know her story.

But this I know.

We, as a community need to understand how hard it is to raise a child with special needs. Many times we, as Special Needs Moms look super confident and friendly, because how else would we want to appear if we were seen in public?

If I have actually gotten it together to enter the world with my very different and unique daughter, then you can bet your bottom dollar I want everyone to like me, to be my friend and also think I'm generally amazing and wonderful. I want you to think that I could meet you by the fountains at the zoo on a Friday morning for fun and games. I refuse to look like the needy, sobbing Mom in the corner with the wildly stimming and special needs daughter. Because who would want to spend time with me then? Who in the world would want to get to know me or my strange family then?

Sometimes I wonder...
How many more years can I enter the public realm successfully?
How long can I use the changing table in the public museum for my daughter who is five years old?
How long can I push her around in an umbrella stroller before I have to switch over to a wheel chair? The answer is...about 5 more pounds.
How long before she gets too loud to take to dinner, where her thrashing is too hard to control while she is slung over my knee at the dinner table?

So, I'm begging you all, on behalf of the special needs community to rise up and help the ones who seem to be happy.

Although you mean well, please don't empathize by saying that your child does the same exact thing. He or she may actually do the same thing...like, for example, chew on a toy. But it is a stage. He/she will outgrow it. My child will quite possibly chew on a toy into adulthood.

Although you mean well, please don't offer to help unless you really mean it. Don't say in passing, "Hey, I'd love to watch your child one day so you can go get a massage."...and then never call.  Actually, you can in fact, pick up the phone, call, and say, "Let's schedule a day where I can come and watch your child for the afternoon. Right now. Look at your calendar."

Although you mean well, please do not invite me to your house and say there is nothing that my child can get into, and that I won't have to watch her. I will. I promise. I will hardly get to talk to you. You may however, invite me to your house and watch, interact, hold and love on my daughter for a while I follow you around and we chat about things that matter.

If you see a special needs child in public, it is meaningful when you kneel down and greet him with a smile and words, knowing full well that it may not be reciprocated.

If I look like I need help, I needed it 5 minutes ago. Take one of my children's hands and walk me to the car, open the door for me, take a bag, fill a plate, feed my daughter.

I know you mean well, but please don't recommend a new drug, book, therapy, food or vitamin that my child should or shouldn't be eating. I can assure you that I know my child well and I am doing what I believe is best for her.  I also know myself and what I can handle in the world of remedies.  I am busy being a good Mother. Cooking meals, cleaning the house, reading books, wiping butts, potty training, folding piles of laundry. Can't be therapist, teacher, friend and doctor too. I know there are moms out there who do that. I'll admit to you right now that I am not one of them.

If you MUST recommend a remedy, pray about it for six months and then if you still feel the urge to share some info with me, then by all means, share it.

Please do not compare my child to other children with special needs. Do not tell me that you know of a child who didn't talk and all the sudden she is talking because she did x, y and z. Not helpful. One of my attendants said it best. My daughter has something called elfism and they are still trying to figure out her treatment plan.

When you see a child out in public who has an outburst, try not to stare or judge the Mom. I know it's hard. I do it too. You have NO idea what is going on with the child or the parent. You know what you can do? Pray for the Mom or Dad. Pray that he or she will have patience in dealing with the situation.

Do what one stranger did. My husband was at the beach playing with my daughter in the sand and water, obviously struggling to keep sandy handfuls away from eyes and mouth.  The stranger pulled my husband aside and said something like..."I see you. I see you loving on your daughter. Thank you and bless you".

I want you to know that I am not necessarily speaking of my general experience...although, all of these things have happened to me.  I have had an amazing support system of friends and family and feel completely blessed most of the time. But other times, I grieve for my life without a special needs child, or I can certainly be at my breaking point. I am the Mom who has to be "on" at all times emotionally. Many people are watching me. My kids, my attendants in my home, therapists in my home, educators and social workers in my home, friends and neighbors in my home. By the end of the day I can be so drained from just being Super Mom. Especially in the Summer. Especially. 

Thank you. Thank you. Thank you for those of you who love my June bug on a regular basis. You are pouring in, friend. And filling up my cup. You are.

East Beach, July 27 (by Kim Olson)

Weight

My husband and I spent three hours on Saturday making June a weighted blanket. Weighted blankets are used to give sensory input to people who have low-sensory systems and are sensory-seeking because of it.  It can also help with restless legs and make a child or adult feel more calm and snug.  June sandwiches herself between her tent and bed every night, making her legs numb and cold.  We were hoping to help her find a similar sensation through a weighted blanket.  I believe we were successful.  Online, these blankets are anywhere from $130-$200.  Here's what we did.

We sewed two pieces of 40" X 70" flannel together (opposite sides) on three sides.

We turned it right side out and sewed 5 inch columns down the quilt vertically.  Next we had to figure out how many pounds our blanket should weigh.

The formula is .10 X the child's body weight + add a pound (we added an extra pound because we were making a slightly larger blanket).

We needed a 6 pound blanket.  We used poly beads (found on ebay) and Rich figured out we needed about 1/4 cup of beads for each pocket.  We poured beads down each column, then sewed horizontal stripes after each pouring.  You can imagine how tricky this got toward the end, moving a near 6-pound blanket and smoothing back beads that were creeping their way out of the pockets.

Rich smoothing beads down. June doing her usual pilates moves.

Three hours later, we folded the top over and sewed it shut.  I must say that it looks pretty cute!  Also, I am happy to report that June has slept two nights with it soundly and has taken one nap in the stroller with it.  She is also enjoying it while reading books or watching TV.

I'm thinking it was worth it.
So she can sleep feeling weight on her shoulders.

And I wonder...

How many nights do I fall asleep with the weight of the world on my shoulders?  No weighted blanket needed.


"I praise you Father, Lord of Heaven and earth, because you have hidden these things from the wise and learned, and revealed them to little children.  Yes, Father, for this was your good pleasure....Come to me, all you who are weary and burdened and I will give you rest.  Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.  For my yoke is easy and my burden is light."  Matthew 11:25-26, 28-30.


On a lighter note, take a look at what we've been up to:

June shows empathy (for the first time) when her sister goes to time-out 

for stealing her toy.

Charlotte throws a T.T. because she can hardly stand being in time-out.

June actually watches the toy train without destroying the track. Big success!!

Charlotte dresses herself up every day (note upside-down coat) and says "Bye bye!" 

We had 9 inches of snow a week ago, resulting in several days of missed school

And tons of fun!!

Goodnight Little Thief

It's been so hot here in Norfolk that we're doing things like filling up our kiddie pool and diving in mostly naked.  My washing machine is certainly getting a work-out, as we all have about three changes of clothes per day, plus all the towels that have snots, poop, dead bugs and dirt on them need more than a "hang-up" every once in a while.  We used 12 CCFs of water last month.  That's a pretty hefty water bill and I'm feeling semi-guilty about it.  Alas, my children are fascinated with water.  Well, June is absolutely obsessed with water.

But there are other issues going on in our house that need to be mentioned, that have been keeping us up at night.  Screaming, thrashing, staring into the dark...  I know you think this little munchkin must be the culprit stealing our sleep:

Charlotte just shy of 3 months

I assure you she is not.  Let me fill you in.  Back in January we decided that it was time to put James and June in a room together.  The baby would soon be here and she would soon need June's room, which is the "baby room/ office" off Mommy and Daddy's bedroom.  So, I designed a quiet little cove in the corner of James' room with curtains that come down for privacy.  I framed and hung up a mirror and beautiful art work.  I thought she would love it. 

 She, of course did not.  People kept saying, "They'll adjust to each other's sleeping habits, they'll feel more secure with one another."  Balogna.  We gave it a good go. Five whole months of June squawking, sometimes going to sleep at around 10, sometimes not....only to find James tossing and turning, moaning for her to be quiet, while she laughed and talked to the the angels again, at 11, 1, 3 in the morning.  We were all exhausted, including June.  My husband is one of those husbands who gets up in the night with the kids.  I know.  I'm spoiled.

So....we finally figured out that June really wanted her old room back.  She just couldn't tell us.  We knew we were going to have to do some major rearranging and streamlining, because, after all, she needed a "safe place" without cords, or things she could get into, eat or dismantle.  Rich and I created this little place for her this last weekend.  It has all her favorite things.  Notice there are no pretty pictures on the walls for her to pull down.  It has just the essentials:

The gate keeps her from entering the office area

So June has stolen her room back and I am happy to report that she LOVES it.  She spends hours up there playing her keyboard, receiving vest therapy, rocking on her rocking chair (upside-down of course) or just destroying the basket of toys. 

This is not all June has stolen from her sister.  Clearly, she is trying to re-live her baby days:

So all this work, and my little thief is now sleeping peacefully up in her room (we get a little help from 5 mg of melatonin as well).  I guess all that advice about autistic children needing a quiet, cozy room is really true for my baby anyway.  It's been a week now.  So far, so good. Thank you God!