Stooping Low

I found out at least TWO amazing things today.  The first one is this. The city of Norfolk NOW allows a person to raise chickens in his/her yard with a permit.  This information was received from a VERY reputable source and I can assure you that she does not lie.  How very very very exciting! All these city chickens roaming around is gonna put Fresh Market out of business.  I am positive that I will join the citizens collecting eggs from the back corners of their yards as soon as my handy hubby builds me a cool coop.  I CANNOT, however, guarantee that he will not move into the coop instead of the chickens...thus, his obsession with tiny houses continues. 

And the second piece of news is this.

My friend came over to my house today. My friend's husband JUST HAPPENS to work at June's school.  This husband JUST HAPPENED to be in the same area as June today because it was picture day, and he just HAPPENED to see June- Bug waiting near the picture line on the floor, probably wildly stimming, chewing on the plastic comb they give you, and messing up her perfectly smooth hair and adorable peach and white polka dot blouse. 

Well, THIS HUSBAND reported some VERY shocking news. 

THE PRINCIPAL, (YES I SAID THE PRINCIPAL!)

was on the GROUND playing with JUNE BUG!

THE PRINCIPAL (YES, I SAID THE PRINCIPAL!) who has 1,000 students to look after and, who consequently must make 2,000 parents happy was on the floor exchanging giggles with my daughter!

I cannot believe it.

Was he sure he saw the right woman?

I have been believing all along that this school was a good fit for my little MD (multi-disabled) Kindergartener, but that information, right there just sealed the deal.

So, even though I don't personally know you, THANK YOU Ms. Nichols.  Thank you for coming away from your desk, leaving the piles of papers and files, cyber-files, parental concerns, big computer and shiny phone, and taking time to sit on the GROUND with my June Bug.  Thank you for INVESTING in the child who will never score well on any written test, or make you proud with her academic or creative achievements.  THANK YOU for reaching out and reaching low, so low that you had to sit down on the ground to go out of your way to make my child feel special today.  THANK YOU for loving her just because...
even when you think nobody is watching. 

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)

Introducing...the BIKE!

It was 103 degrees today.
I knew the BIKE was coming and when I received the phone call from the happy man at Numotion, I felt like a child at Christmas.

And he came like he said he would.

Very kind. Very patient. Very Sweaty.

Delivering the BIKE with a smile, dress-up pants, square-toed oxfords and white sunglasses...which June promptly ripped off his face (I gave him permission to wear something cooler when it breaks 100).

June knew that THAT was her shiny red-raspberry bike.

And for a very brief second we had to take her off of it so we could adjust the seat, turn some screws, sign some papers. 

Of course she immediately threw her body on the ground in convulsions, thrashing with rage, spitting fire and hurling insults because she thought we were sending back her new toy. The gall of these people.

SO we took it for a test drive...
Along with the rest of the circus.

Sass (short for Sassafras) went and got her bike when we weren't looking.

Getting a slow start here...the poor 6 year old was patient

And they are off!

 

 

I must say we only made it around the block...but mostly because everyone was roasting and dripping and Sass was moving at a snail's pace in her rain boots and walking-the-bike technique.

Super pumped and proud of herself!

June would like to thank Numotion for having such a knowledgeable and friendly team of mobility specialists and she would ESPECIALLY like to thank the Bloomfield Group for their generous grant which aided us greatly in the purchase of this trike.

F-i-v-e

Dear Iva June,

Five years ago today you entered this world. 

Created by the Master Himself.

Planned and perfect.

The most beautiful baby I had ever seen.

http://haynephotographers.com/

  And your Daddy and I knew from that moment on that you had your own schedule, your own way of doing things. 

You were taking time taking IN, 

measuring widths of spaces, 

 counting circles turning, 

listening closely to every beat of every heart that held you close.

 

And we thought the day would never come when you'd venture out on your own, exploring new ground, paving your place in our family, 

straining toward independence.

15 months

And I know there have been times we haven't understood you.  

And you haven't understood us.  

But we are learning to speak each other's language. 

It's hard.

Hard to speak a language that has no translation, no natives, no norms.

No guidebook.

But I don't tell you enough that I'm proud of you. 

That even though we do things differently, that it's okay.  

And I'm sorry if I've gotten frustrated with you.  

I need to be patient.  

Like you are with me. 

 

I could spend some time listening to what you are trying to tell me.  

Even more time.  

Because you have something to say.  

And it is much wiser and more wonderful than 

All these ridiculously tainted thoughts renting space in my head.

You say.

Look at the leaves dancing up there, 

black shadows twirling proudly against the orange sky.

Every move orchestrated and predicted. 

Do you see the way the water moves on the river? 

The way it feels against the span of my hands, 

dripping slowly down the length of my arms,

creating tiny rainbows that glisten as it circles back into the water?

Put your head on the piano. 

Feel the pounding of the keys against your body

Through your heart. 

Right to your very core.

Hold me close.  

Let me wrap my legs around your back, 

My arms around your neck.  

Too hard.

So you know I love you. 

Forever.

Happy Birthday my sweet Iva June.

I would tell you to relish the years,

take time to capture each moment,

to listen.

But you are wise beyond your years, my dear.

Good Friday

This weekend we jumped through a lot of hoops to get to a wedding.  We packed the car up, headed down to Durham, NC, dumped a couple of our kids off at my brother-in-law and wife's house (thank you J and K!!) and whisked our one very precious special needs daughter off to a wedding in Wilmington.

I'll be honest.  It's hard to watch a wedding with a special needs child.  
She wiggles, crawls away, spits, eats the dirt, eats the table cloth, eats the centerpieces, cries, climbs up strangers' legs, thrashes backwards, flails wildly, stims constantly, shrieks, poops her pants often and bites randomly.  And she's getting stronger by the second (praise God?).   

And then there are those rare moments where she is completely 
precious and happy. The easy part.

This wedding though, was unlike one I've ever been to before.  Not because of the light mist, the most perfect venue, or the stunning bride in fairy-tale white, not because of the loyal Navy community present, or the gorgeous big white tent, or the delectable food,  but because of the mere fact that I had NEVER in my life seen so many wheelchairs at a wedding.

Yes, I said wheelchairs. Look:

You see, the focus was clear for this couple.
And someone might as well have been screaming it from the rooftops:

ALL PEOPLE ARE VALUED AND HAVE SOMETHING TO OFFER,
DESIGNED BY GOD, AND WELCOME HERE!!!
(AND BY THE WAY, WE MIGHT, JUST MIGHT HAVE SOMETHING TO LEARN FROM THEM).


Come by horse, by car, by plane, by spaceship, by buggy, by stroller, by crutch,
by wheelchair.
WE LOVE YOU!
Scream, holler, hoot, cry, wail, fart, drool.
STILL COME!

So we came.  Along with several other families who may have been shunned or shushed or shut out at other important ceremonies.

During the ceremony.

Doing a very good job not ripping the tablecloth off.

And that night, as I watched this bride dance with my daughter for a solid 15 minutes, my eyes welled and spilled because at that very moment, I realized she loved Iva June for who she was.  I was not bribing, begging, bartering or making apologies for her.  I was not paying her to care for her.   She was not a relative or even a long-time friend.

She was doing this because she actually wanted to.  She seemed overjoyed to be holding her, swaying with her and letting her know that she was, indeed, important amongst 300 wedding guests.

And not only did she dance with my daughter, but she took several others out of their wheelchairs and danced with them as well.

What bride has an hour to do that?

This one.

June dancing with her new "attendant"

And that is how you raise a daughter.  Thank you, to this woman's parents.  I know your own journey and heartache has made your family also very unique.  Well, I want you to know, it has come full-circle.  And this may be just a very small part of the WHY in all those years of hard moments and shed tears. Thank you.  Thank you. Thank you.

The littlest helper

We had rice tonight. Again.  Which always seems to be on the menu with this gluten free diet.  Every time I steam rice and eat with my three kids under 6, I make myself promise we will not do it again for at least 3 weeks.  The end result is hardly in the mouth, but MOSTLY on everyone's bare feet, mashed into butt cracks and stuck to hair and under chins and chairs.
And definitely MOSTLY NOT on the plates.

You have one of two options at this point.
Clean by picking up each piece individually, basically with tweezers
OR wait til dry and, in the morning, sweep up.

Truly, I have no idea how people do it with chopsticks, but at the end of dinner, this is what the table and floor looks like:

Don't EVER get a table with deep rustic grooves in it, NO matter how cool it looks.

Fortunately, I have a little helper who is always willing to clean up the mess.  I put her right to work. 

 

So this entry really isn't about rice, it's about my little helper.

My babiest girl is turning two years old in two days.   

And about 1000 days ago, she was given a very BIG assignment, an assignment only the God of the Universe could have given to the 

littlest helper.  

And OH, she has risen to the occasion.

She is JOY. 

She is Unbridled PASSION. 

She is teacher.

She inspires, encourages, plays with, and enthusiastically loves her older sister in a very BIG way.  

And with her screaming demands, come bold streaks of courage where she takes June's hand and leads her through the steps of life.

And this littlest sister pushes her BIG sister to do more, to be more.

To come out, to dig deep in her soul and smother her with kindness.

And...to just plain smother her.


To wrestle with her birth order number.
To find a brave new place where I haven't gone,
and triumphantly stay there for a while.

Happy Birthday my littlest Charlotte Rose-Marie!