I've seen a meme on Facebook about special needs kids not being weird or odd… Share if you agree! And I'm all like, are you kidding me? My Toby is SO weird. So lovably, awesomely weird.
The message I want the world to get is NOT: My kid's not weird.
The message I want the world to get is: Embrace weird. Expand the boundaries of how things are often done, to make more room for weird.
This is why it's important to me to talk, talk, talk about Fragile X.
I've been reading the book, Same Lake Different Boat by Stephanie O. Hubach, and a few women in my church have been gracious enough to read it with me and meet to talk about it over lunch. A few more women expressed interest, but they are mom's of kids with special needs, mom's who homeschool because the public school system was not meeting the special needs of their kids, and for one reason or another related to all those things, didn't make it out. Yup, that's pretty much how it goes for special needs parents.
Those of us who did read the book, who are talking about it, we are interested in how the church (our church and the church at large) can take and apply its insight. We want families and individuals touched by disability to not feel as though obstacles stand in the way between them and corporate worship. We want to remove the obstacles.
In some cases there are physical, tangible obstacles: wheel chair accessibility, required audio aids, etc.
But it sounds like the foremost obstacle is mental. It's preparing the church to make room for disruption. To grow the church into being okay with a break in the flow.
We have a program! We have an ORDER of worship! Excellent. But if you sincerely want families with special needs to join you, get ready for the hiccups in that program and that order.
Roll with the weird.
This was a rough week.
Not for me personally. Not for our family. Not for the Fragile X community (as well as the rest of the special needs community) while it celebrated the ABLE Act passing in congress.
But for the friends and family of Eric Garner, when the grand jury reached its decision not to indict Officer Daniel Pantaleo, it became a very rough week. For the friends and family of Tamir Rice who are preparing for their trial - a rough week. For Ferguson... rough week after rough week after rough week.
It's Christmas. We're supposed to be pouring glasses of eggnog, watching cheesy movies, wrapping presents, and driving around looking at giant snowman inflatables. The Christmas season doesn't have time to stop and consider police brutality and racial divides.
We cannot light a candle of peace without looking around and seeing all the places there is no peace. We cannot light a candle of peace for advent without asking, no matter our race, how long?
I don't believe we will ever reach the fullness of peace on this side of heaven, but when I light the candle of peace I have to ask: In what ways can I sew the threads of peace back into the ripped and broken places?
Maybe peace is...
Found deep in the December post office line.
On my trip this week there was a woman in the wrong line sent over to mine. I knew she was there before me, so instead of pretending like I didn't notice, I motioned for her to stand in front of me. It was incredible how grateful she reacted. She thanked me more than once. Each time I shrugged and said, "You were here first." Maybe she was even more pleasantly surprised because I'm white and she's black. Maybe that didn't matter at all. It still felt like a moment of sewing peace in my community.
Maybe it's found by just answering your door.
Sometime this week around 8:00 p.m. a teenager knocked on our door. When I opened it, he held up a flat basketball and asked if we had a pump. We didn't know him but because we have a basketball net at the foot of our driveway, he must have figured - here's a house with basketball inflating capabilities. He was right, and he left our property with a very bouncy basketball. Maybe that story is even nicer because he was a black male teenager whose request was met easily and happily by a white household. Maybe that doesn't make a difference whatsoever. Either way, kind neighborly moments weave peace through our neighborhoods.
Maybe peace is found by joining in protest. Standing with the wronged.
Maybe it's being nicer to your 10yo when he's DRIVING YOU CRAZY BECAUSE OH MY GOSH HIS LACK OF EFFORT ON HIS SOCIAL STUDIES PROJECT IS KILLING ME, uh, you.
In an act of high irony our pastor asked our family to do the presentation and lighting of the advent candle of peace during service yesterday.
We built on that irony by having Blue do the actual lighting. And yes, he ended up playing with the lighter, so I had to bite my tongue from snapping at him in front of the whole church.
Okay fine. I'll give you a moment.
Never mind the presenters. The material presented - words written by our pastor and the prophet Isaiah - is worth revisiting throughout this week, and I wanted to post here.
Isaiah envisioned a transformed world. His world, like ours, was scarred by violence, bloodshed, anger, prejudice, and injustice. But he saw God’s new day, a day of peace and justice. He saw the day when old animosities melt away as the wide embrace of God draws outcasts in and the deep love of God transforms enemies into beloved friends.
The season of Advent calls us to live in that peace today. As we light the Candle of Peace ask yourself this question: Where in my world would God have me be his agent of peace?
The wolf will live with the lamb, the leopard will lie down with the goat, the calf and the lion and the yearling together; and a little child will lead them. The cow will feed with the bear, their young will lie down together, and the lion will eat straw like the ox. Infants will play near the hole of the cobra; young children will put their hands into the viper's nest. They will neither harm nor destroy on all my holy mountain, for the earth will be filled with the knowledge of the LORD as the waters cover the sea.
In that day the Root of Jesse will stand as a banner for the peoples; the nations will rally to him, and his resting place will be glorious.
As we wait His coming, we light a candle, a ritual performed as a vow.
Our waiting will be active.
We will do the work of peace that His light may grow brighter. We will keep doing this work no matter the divide. We will not stop until He comes.
Me: "I did what you asked and called the insurance company today."
Kevin: "You did?" He doesn't bother to mask the shock in his voice. It's founded, his surprise. Because A. I did what he asked and B. I made a phone call. On purpose.
(If my 12-20 year old self knew how much I hated talking on the phone these days she would be shocked. Floored. She'd disown me.)
Me: "Yup. I called. And then he couldn't hear me, so I hung up."
Kevin: "Did you call back?"
Kevin: "Are you going to call back?"
Me: "Sure. If we put in a landline."
I love my phone for twitter, instagram, facebook, pulling up pinned recipes while at the grocery store, handing it off to my kids so they'll behave in public places, and text conversations. Kevin and I decide very important things over texts.
See? It's super important that he pretend asks my permission so I can state the obvious in three separate texts in reply.(He deserved three dings.) Texting is fundamental to how Kevin and I annoy/make fun of/tease each other in the middle of the day.
(It's also often excellent entertainment for my friends when I send them a text meant for Kevin because I just always assume my texting is open to a convo with him but when it's not... Oops.)
Those few embarrassing moments aside... I love my phone. For everything except phone calls. So I'm over calling it a phone. I WANT A NEW WORD FOR PHONE.
What do Germans say? They're the best at exact language.
*tries this out, annoys everybody*
*grumble, grumble gumble*
*decides to wallow with a little help from the Halloween candy stash*
*finds a Twix!*
So... In conclusion I may not have a phone that actually makes phone calls and I may not have life insurance, but I do have apps and chocolate.
You're right. That's not so bad.
On the Tuesday before the Saturday Kevin is to return from his month in Africa my sea salt grinder came apart in my hands right over the Greek pasta salad I’d just finished. This mechanical failure sent giant salt crystals pouring down on dinner rendering it inedible. We ate hummus, crackers, and apple slices instead. This mama was over it.
The kids and I Facetimed Kevin multiple times a week. Not a day went by where Kevin and I didn’t at least have a text exchange. We had other ways to feel close to what he was doing like keeping track of his days on a big desk calendar.
We're at 28 Xs now - three boxes to go!
We always knew what time it was for Kevin because we reset the microwave to Kenya time.
3 in the afternoon for us = 10 at night for Daddy.
We learned about the people Kevin was serving by reading A Long Water to Water by Linda Sue Park a chapter a night till we were done.
There's this scene with crocodiles... *shudders*
Kaden chose an article about the war in South Sudan for his first current event assignment. (And got 100%!)
Even so, Kevin was still there, seeing and experiencing new things, and we were here up to our usual grind.
But! In that grind the kids were never late to school. I volunteered for picture day. I scheduled and attended an IEP review. I ran errands: Toby to OT, Blue home from tae kwon do, oil change here, dry cleaning pick up there. Two of us got haircuts (me and Blue). I painted two bedrooms in my mom’s house and reorganized our own home office a task that involved me building a shelf. (For real.)
And Kevin doesn't think I follow directions!
Church meetings, book club, and writer’s group were all attended. Bible studies got prepared and taught. I won a book and read that book. I took the kids to the beach twice, a science festival, and one Saturday we crossed the state and visited my dad. This Saturday, before Kevin gets home, we’re going to the zoo. (Kaden is signed up for the "Impressive Impalas junior zookeeper class.)
We decorated for fall. Began Halloween costume purchases. Most dinners were cooked without incident. Clothes got washed. Beds got made. Floors got swept. Dog got fed. One broken salt grinder aside, we faired well.
Single parenting is doable! Well, so long as you don’t have to work and have a free grandparent babysitter available for the aforementioned church meetings, book club, and writer’s group.
For a month anyway.
Because there’s something about doing life without a partner physically available that made all of the above a touch harder. In spite of my, “I’m great! Just missing Kevin! It’s the longest we’ve ever been apart!” glib answer to the ever-frequent how-are-you question, I was often a little gloomy.
I was going to be SO productive with my evenings while Kevin was gone. Finish the first draft of my current novel! Update the blogs! Read all the things! (One adult book and one kid’s book is the least I’ve read all year.) Instead I binge-watched ABC Family’s Greek from start to finish and THEN went back and re-watched all my favorite episodes pining for MY college boyfriend. (Which would be Kevin, so that’s ok.)
I missed my husband, was initually nervous sending him to all things unknown (That incuded a war zone... searching for appropriate articles for Kaden's current event that first week Kevin was gone may not have been the smartest move in easing my concerns.), but family policy has always been: fear doesn't make our decisions. The boys missed their dad but learned that sacrifice is part of being an obedient Christ-follower. So yes, we'd make the same decision all over again, but here's hoping not anytime soon. We're ready for Kevin to be home.
July is Fragile X Awareness Month so I've been sporadically facebook sharing and tweeting and instagramming various fragile X facts. Mostly statistics. Mostly not personal.
But today, July 22nd, is Fragile X Awareness DAY and I guess I should up the ante or something like that. Since Toby, our guy with fragile X, is five...
1. Quirky Conversations
Kevin and Kaden have been out of town, (They get home today!) so we remaining three have been playing musical beds a little bit. A few mornings ago, after a night Toby had slept in my bed, the VERY FIRST words he spoke in the morning were:
"Look! A lobster!"
In response to which I said: "Where?" (This is Florida after all. It's possible?)
And he pulled up his pillow and said, "Under here!"
But even without having yet put on my glasses, I could tell there was no lobster under the pillow, not even a crayfish he'd mistaken for a lobster. Silly kid.
2. Sad Realizations
Last week Blue (no FX) got to attend a camp at a nature preserve 5 days a week, 9am to 3pm. It cost $100.
Last week we spent $100 on Toby's activities as well. For his money's worth he got 30 min of speech therapy and 30 min of occupational therapy on Tuesday morning.
3. Deliberate Reading
Toby will be starting kindergarten at the school were Kaden and Blue already attend which is to say Toby will be his quirky, difficult self in the environment where my older boys are living out most of their social lives, the place where they are most at risk for peer rejection. Because of this, tops on our list for important summer reads for Kaden who is about to start 5th grade: Rules by Cynthia Lord a book about an older sister dealing with feeling embarrassment and resentment toward her younger brother with autism.
4. The Latest Obsession
There's always an obsession. Obsessions around here rotate from Phineas and Ferb to something else, back to Phineas and Ferb then on to some other thing, and back to Phineas and Ferb. Right now we're on a something else.
Since taking Toby to see How to Train Your Dragon 2, he has been obsessed with dragons. He must watch the first movie or the Book of Dragons EVERY SINGLE DAY. I have also bought him two HTTYD2 books to have in the car and a Toothless toy and some action figures which he will get in his first day of kindergarten zuckertute.
But you guys, when he TALKS about the dragons? The way he says "Whispering Death" in his little Toby voice? I melt.
5. Anxiety Throw Up Meets Summer Vacation
Anxiety throw up is always a problem. Anxiety is big for fragile X kids, and it's a real and most un-fun symptom that affects Toby. It's the primary reason we didn't all go on the trip Kevin and Kaden went on. Travel with Toby is hard on Toby. SO! MANY! NEW! THINGS! It's also hard on me, the person he most expects to FIX! ALL! THE! THINGS!
We DO travel. We're going to St. Pete Beach for three days coming up soon. Place your bets now on how long it takes him to throw up and where. I could make a grid! On one side: 10 minutes in, 30 minutes in, 1 hour in, etc. On the other side I could put locations: in the hotel room, on the pool deck (where I'd place my money), in a restaurant (another good contender). We try to make accommodations. What we will no longer do is travel all of us minus Toby. We tried this in March for our Haiti trip and it screwed up his sleep habits and increased his anxiety for months.
Yes, even on our home turf, we see anxiety.
Toby had swim lessons two weeks ago, and I had to clean much throw-up from the van that week. Toby can swim. Toby LIKES to swim. But MAKE him swim and work harder at swimming better and... BLETCH all over the van before he gets out for a lesson.
Just this Sunday we had to deal with it.
Church is not a throw-up event.
Restaurants are not a throw-up event. (Usually)
The beach is not a throw-up event.
But the last two times we've gone from church to restaurant lunch to beach? BLETCH (Once in the van after restaurant en route to beach. It was SO BAD. We had to pull over. And this past Sunday? In the restaurant. Good times!
We are church-going Floridians, so this is going to come up again. It is. Sooooo. We either picnic ON the beach from here on out OR don't tell him the beach is part of the day's line-up. We'll see.
There's your five windows into our particular fragile X world. Hopefully they help you remember:
Different not lesser.
Fragile not broken.
If that's all you get out of Fragile X Awareness Month/Day, I'll call that a success.
You say your goodbyes to preschool and you make your plans for kindergarten. You watch the first wobbles of tiny white baby teeth. You tear up when you see old videos and hear the bird-like baby caws of his vocal play because you remember those sounds, they still echo in your memory fresh and full. They are not the sounds of five years gone.
You tear up when you realize one morning that the first tooth has disappeared, possibly swallowed in the night.
You still have a boy who cries for kisses on his boo-boos. You still have a boy who crawls into your bed and tucks himself into you at any hour of the night. On his face, his nose and the puff of his cheeks are still all round and soft.
But his body grows in angles and he's stretching, desperate to catch his brothers.
There's a part of you that wants another baby, a swaddled bundle of milky breath. But a bigger part of you like this stage. Likes that the last trip to the zoo saw the stroller left behind, no bottom basket packed with changes of clothes. Instead, one backpack with snacks and towels for the splash pad and you were all set. You appreciate that you didn't have to stay behind for the zoo's kayaking fun because all your boys met the age five requirement.
So while you get teary and nostalgic for the baby, toddler, and preschooler left behind, you are ready for the bigger fun a bigger boy can take on.
You can handle the energy, stubbornness, and endless questioning that is five. You've been here twice before. Yes, it's different because every kid is different. But you still know five. You like five. You're ready for five.
Because even at five, he's still the baby.
On Monday I had a piece posted on another site, a piece about something I did not want. When I read the call for contributors to write about wanting I dismissed it until I came to the provision for "didn't wants." This was easy. I've made peace with Fragile X, but I never wanted it.
Here's a Thursday throwback to the time in that post. April five years ago, 8 months pregnant with Toby and hugging Kaden and Blue after trial one day.
Tuesday Kevin and I participated in Toby's final IEP meeting before he starts kindergarten. This was the biggie where we went through every evaluation ordered this year, chose his eligibility for services moving forward, and choose his primary and secondary exceptionalities. Previously his primary has been Speech/Language but at the elementary school level this would mandate he be placed in a regular classroom. Without the help of a one on one aid, this isn't possible for Toby. And no, one on one aids are not available.
I have no idea what the best school or classroom for Toby will be. It's hard to say what school I want when teachers and students are as much (if not more) of a factor than the actual school. What I do know is that the school Kaden and Blue already attend will be easiest - all the kids on the same schedule. It starts late (9:40) which means that Toby can have a rough night (as he often has), sleep it off in the early morning (as he often does) and STILL get to school on time. I like these things.
Here's what I'm still nervous about:
He'll be in a self contained classroom. (Which would also be the case at another school so I'd be nervous either way.)
Toby mimics, Toby needs to be around "typical" kids to mimic. Toby CAN do subjects like art, music, even computers with assistance. Not a babysitter but a one on one to help him do the work. It's work he CAN do, so I want him pulled to participate in such things.
I'm on the fence about fully including special needs kids in typical classrooms. I just don't see how it's manageable and fair to the teacher. BUT, I also think there needs to be as much messy mingling as possible. On the playground, at lunch. Yes and yes. I WANT this because "typical" kids deserve a friend like Toby. He has much to teach them about how differences can still be very, very fun.
This is happening at church. I want it to happen at school too.
In the most recent school newsletter it mentioned the "Kindergarten Blastoff" and I called to make sure this included Toby too. The person I got on the phone wasn't sure, but didn't think so, but I'll have to be called back.
Here's the deal. This event SHOULD include Toby and his exceptional needs peers. The incoming kindergartners should see Toby as part of their grade. They should recognize him as a fellow kindergartner from the very beginning. Kindergartners that may not have class in their pod but still fold in at lunch and recess and music and art and field trips and then perhaps even birthday parties and play dates. Because how will a kid planning his birthday party ever think to say, "Mom, I need to include Toby. He's in my music class and he sings really loud. It's funny." if Toby's not in her class?
(But before you think I've turned this into MY MAJOR CAUSE AND FIGHT AND EVERYTHING because you think that I think TOBY'S ENTIRE ACADEMIC CAREER HINGES UPON WHETHER OR NOT HE GOES TO KINDERGARTEN BLASTOFF know that when it was Blue's turn to attend Kindergarten Blastoff, I flaked on the date and we totally missed it. So. There's that.)
If Toby's not part of the typical kindergartners world as much as possible. Then he becomes a weird, misunderstood anomaly. And that is not ok.
Let's break this down as simply as possible:
I do NOT want:
*My son to be a weird, misunderstood anomaly.
*I do not want my son to be fully segregated from his typical peers.
*I do not want my child doing the typical curriculum because we know that it's not best for his learning style, and because he's not at that level, so...
*I do NOT want him in a typical class room setting for academic subjects where he'll get nothing out of it.
I DO want:
*Toby to be in a classroom where the academic subjects are catered to his learning style.
*Toby to be around typical kids as much as possible all the other times.
Doesn't seem so complicated, does it?
I should also add, this is a list for the short term. I have wants, big wants for the long term that are also popping into my mind these days because when a mama sends her baby off to kindergarten with tears in her eyes, those tears aren't so much for the cutie five year old, prancing off in his too-big backpack. Those tears are already mindful of graduation day. Because the steps into his classroom on the first day of kindergarten are really the first steps toward walking across the stage and his degree.
*looks around for tissues*
Deep breaths. And maybe I'll think about those long-term wants for another post. But first I'll need to stock up on more tissues.
Like, lots and lots of fun. Our boys were so free range. They climbed so many trees. Chased so many goats. Collected so many scrapes. Boy heaven.
Kaden and Blue and three of the missionary kiddos. There were two other older boys not pictured because they were at school. (And six girls, and haitian kiddos...)
I'll go through it day by day.
Thursday, March 20
We left via MFI (which means arriving at the hangar at 6am). Matt McCormick of Paulos Group met us at the Cap Haitien airport and once we'd collected all our stuff and he'd gathered up his packages that had come through MFI that day and cleared them through customs, we were off.
First stop was Lakay a restaurant in Cap Haitien popular with Americans as was evident when we walked in and saw an American family at one table and three guys in UN uniforms at another.
Then we hit up one souvenir place with handmade items from artisans across Haiti. And even though we already have one nativity from Haiti, we couldn't pass up this scrap metal piece for our collection:
I also got some pot holders because... pretty. (And useful!)
Then it was off to Fort Liberte to the Paulos Group Community. (See previous post to read all about them.) The purple house in front is where we stayed and right inside was a welcome note that told us where we'd be eating dinner each evening. How great is that! (We'd brought a cooler with our food for breakfast and lunch.)
Friday, March 21st was a market day where goods from the Dominican come into Haiti. This is NOT an organized process and Matt drove us over to watch the frenzy. Everything was carried in on wheelbarrows or heads. As in... Dominican trucks drove up goods and unloaded, items were carried over by throngs of people, then goods were reloaded onto Haitian trucks. (Because they are sold further in, not right there on the border)
That makes sense how?
It doesn't, but we were entertained as we rode along.
Afternoons were about resting from lunch till about 3pm, the hottest part of the day, and then playing hard before dinner. In fact, dinner was often a very short pause for the kids before playing hard before bed.
Yeah... Kaden didn't get the ball much.
Friday night at dinner the Gauthiers offered Kevin and I their kayaks to take in the morning to paddle around the bay by the fort. Kevin's not the biggest kayaking fan (in spite of the few times a year I don't give him a choice) so it was decided that it would be more fun for Kara and I to go together.
So we did.
Saturday, March 22
And joked that all the Haitian fishermen must have thought we were some crazy lost tourists who'd floated in from the Dominican.
But holy wow - what a beautiful morning.
Me in front of the fort.
Sunday, March 23rd.
We went to church! And it was all in Creole! We were there for a two hour service and then an hour-long Sunday school. At the service I recognized one hymn (Count Your Blessings), enjoyed the wide assortment of hats, heard in one prayer that they were giving thanks, (Because I can understand the word "merci" and get the gist of a prayer when it is repeated often, within a cadence. Later there was a prayer peppered with "pardon" and my spiritual soul understood that too.) and I tried to get the girl in front of me to smile. (She didn't, not even when I gave her a sticker, but her grandmother did.) The class we went to was chosen for us because it was for people who'd at least graduated high school, the intellectual class. Apparently they were talking about marriage. At one point our friend Matt translated for me that the teacher had just asked, "What do you do if your spouse curses at you?"
Keepin' it real :-)
Monday, March 24th
We made it back into town to take the kids to the fort and play at the small beach there, but first we stopped to check out Fort Liberte's market day.
...so we could try these yummy yums.
The market was a sight but so were we. Two tall white women with long blond hair, a pack of kids around us, one little girl with only one shoe. (Because... kids.) Everyone had to stop and point out the missing shoe. Most were probably wondering why we didn't just buy the poor girl another pair with ample opportunity at numerous tables along the market route.
There was also the fact that I paid for the above treats with American money. (Which they accept, but it still drew attention.)
My big 'ol camera got attention too - obviously I wanted to take pictures, but a lot of people weren't so crazy about that (unless we were buying). I get it. Their work, their life, it's not a novelty tourist attraction. They don't know if I'm pointing my lens in pity or celebration. Also, with Kara there, who speaks Creole, it was an opportunity to say no, be heard. There's a church right up the street that has American groups in all the time, and I'd guess they visit that market and snap away without asking. So there was that too.
Then it was off to the climb around the fort!
And play in the water with the kayaks!
And take pictures of fishing boats! (Ok, maybe only I get excited about that, but I thought it was fun.)
And then on Tuesday, March 25th
We packed up
Wednesday, March 26th
Stateside... Throw Mountain Dew and Double Stuffed Oreos into my Target shopping cart because these are hard-to-come-by favorites of our new missionary friends. Figure I'll toss in such extras for the next few Target trips then send down a filled cooler to Haiti sometime.
That evening Kevin gets a call from Matt of Paulos Group. Kevin had told them he was scheduled to fly Thursday, and Matt swore he wasn't going to call, but... they needed finished nails (for nail guns) and a few other odds and ends that would come faster via Kevin/MFI than a DR trip.
Thursday, March 27th
Home Depot goods along with a 12 pack of Mt Dew and some Oreos dropped off at the Cap airport and Kevin waves through the crowd at Matt's wife, Pam there to pick up the supplies.
See? How fun is that? The connection we made. The group on the receiving end we now understand so much better. Not just its ministry, but the people, the landscape.
What an opportunity.
In the four years Kevin has served with MFI we've never had doubts about this ministry, this calling. Not on low support months, not on long flight days or surprise overnights. But this trip, these first-hand experiences, without a doubt renews our family commitment and passion to the vision of MFI to stand in the gap between state-side provisions and Caribbean-side ministry.
So grateful that this is our journey.