Tag Archives: special needs

Imagine

Five Minutes, the word is:

IMAGINE

GO

imagine picTrailing behind her like little ducks, a row of sweet, sticky, unbearably cute grandchildren for me to love. A man who looks at her with a smile, a twinkle of humor and just a little bit of awe. A home that is calm, but full of life. Books and dance and shades of purple, things that are all her own, beyond family. She is happy.

Artsy fashion choices and some unusual job which suits her unique character. Friends who laugh with her and appreciate her wit. Adventure and travel and maybe someone to share it with her. Purpose. A great over-riding passion which she can spend her life on. Maybe more than one. She is happy.

A smile that lights up the room. She has carved out her own place in the world. A place where she is safe and appreciated. Work that is meaningful and rewarding. A community that embraces her beauty and accepts her quirks. True friendship with someone just like her. Travelling with us, but living independently. Close enough to check in, but far enough that her life is her own. She is happy.

He is an athlete in some cool, extreme sport that gives me heart palpitations, but makes him feel like the king of the world. School wasn’t easy, but he found his groove and that bright mind shone for everyone to see. He keeps himself away from the worst excesses of his generation, because he knows what sad endings look like. He shares his adoption story with people who are interested, but in that matter-of-fact way that makes it clear it’s not a big deal to him. There isn’t anyone he can’t charm with his huge toothy grin, but he’s got his eye out for a very special girl. He’s a romantic like his dad. He is happy.

STOP

So here’s my dreams for my kids, maybe I’ll laugh someday about how off base I was. I know that “happy” isn’t a goal, just an occasional by-product of a life well lived. But what can I say, I’m a Mom. Of course I want life to be easy and smooth and effortless, but when it’s not, I hope they have imagination enough to envision a happy ending.

I’m sure God feels the same way about me.

5minutefridayFive Minute Friday with Lisa-Jo Baker

1. Write for 5 minutes flat – no editing, no over thinking, no backtracking.

2. Link back here and invite others to join in.

3. And then absolutely, no ifs, ands or buts about it, you need to visit the person who linked up before you & encourage them in their comments. Seriously. That is, like, the rule. And the fun. And the heart of this community..

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The Crazy Days

There are times
When my heart explodes in a supernova of adoration
When I am overwhelmed with fierce protective instinct
When I drown in the bliss of your presence.
It is Too Much and Not Enough all at once.

There are times
When I explode in a flash storm of frustration
When I am overwhelmed by the urge to hide, to escape
When I drown in the demands.
I am Too Much and Not Enough all at once.

There are times
When feelings overlap and I can scarcely find my footing
When I wonder if I’ll ever get my life back
When I wonder if I’ll be entirely lost when I do.
You are Too Much and Not Enough all at once.

These times
Overtake
Overwhelm
Over too soon
Too Much and Not Enough all at once.
abstract4

So here’s me, in the crazy days, when the best answer to “How-are-you?” is “It’s complicated.”

I am wonderful. I am terrible. Sometimes both at the same time. So I’ll just say… “I’m fine.”

Because you are SO worth it!


The View From Over There

I shamelessly eavesdropped accidently overheard a conversation at the park this morning. It was between mother and daughter as they watched the kids play. The daughter (who was also the mother of the kids – clear?) was unloading about her son’s social problems, dealing with teachers at school and the struggle to incorporate speech therapy into his life. Grandma “hmmm-ed” and “uh-huh-ed” throughout. At the end she suggested that it would be a good idea to carve out just 15 minutes a day to play speech therapy games with the son. Nothing too strenuous, just a chance to spend some time together and improve his communication skills.

“What a difference that could make in the rest of his life!”

“It’s only 15 minutes.”

That one there. That’s what got my blood boiling. I mean, does she realize how HARD it is to carve out 15 minutes EVERY day. Does she have any idea how tired this poor woman is? Overwhelmed? Discouraged? It sure is easy for someone else to suggest adding this or that to an already over-packed schedule. Does this mom really need ONE more person adding to that burden of guilt and obligation? What she really needs is a hug. And a hi-five. And an assurance that she’s already doing everything exactly right and shouldn’t change a thing.

I could be projecting.

Because that woman said “Good idea Mom. I’ll give it some thought.”

Here I was ready to have her back (and who doesn’t need some creepy, eavesdropping stranger leap to their defense?). The truth is, Grandma is probably right. She wasn’t unsympathetic or demanding or guilt-trippy (cause then I WOULD have jumped into all that with a vengeance). She just saw something important that might make life easier in the long run. She’s on the other side, beyond late nights and concerned teachers and feeling like it’s all too much for one person to handle; where needs and problems loom large, because they are close up, all the time.

She sees what’s important. She sees what she regrets and what she doesn’t. She sees the big picture. She’s outside the eye of the storm.

Maybe the view from over there is worth considering.

viewpointSo here’s me, in the midst of it all, where it is so much easier to react and survive. We could use a little more strategic parenting up in our neck of the woods. Now to try and figure out what my new 15 minute habit should be…

5minutefridayFive Minute Friday with Lisa-Jo Baker

1. Write for 5 minutes flat – no editing, no over thinking, no backtracking.

2. Link back here and invite others to join in.

3. And then absolutely, no ifs, ands or buts about it, you need to visit the person who linked up before you & encourage them in their comments. Seriously. That is, like, the rule. And the fun. And the heart of this community..


One Thing To Rule Them All

I had planned to blog last week during our holiday. Not cause I have to. Because I really want to.

I envisioned myself writing deep thoughts about God and life in my brand new notebook as our mini-van winds its way through the Rocky Mountains. Or perhaps curled up with a pen and paper in front of the fireplace, trying to recapture the hilarity and wonder of a new family adventure. At the very least, I would have time, away from chores and telephones and teetering piles of laundry, to polish up one of the many half-finished posts in my drafts folder.

But no more whiney posts about parenting. Not again. I’ve done way too much of that.

This holiday week was chock-full of inspiration.

  • Easter week… bringing one of the greatest showdowns of these modern times – Jesus Christ vs. Chocolate. Who will capture the heart of our generation?
  • The Rocky Mountains – my very favourite place ON EARTH. Ten thousand Japanese tourists can’t be wrong.
  • Spending time, real memory-making, road trip taking, in each other’s pockets until you want to scream, time as a family.
  • Glen’s Grandma’s 90th birthday – bringing in cousins and uncles and one incredibly beloved nephew from far and wide; showing off our new addition for the first time; celebrating a woman who isn’t Great because of her many years on earth, but because of who she is and how she loves.
  • Finally introducing the boy to MY Grandma (clearly we have an embarrassment of riches in the Great-Grandma department) – by the time we left he had decided she was his favourite adult, ignoring the rest of us and dragging her away when the rest of us tried to talk to her.
  • My brother-in-law changed his FaceBook profile picture to a red equal sign (the internet is awash in the gay rights and the bible debate). I wanted to “like” it, but I wanted to explain that to everyone who might not understand why I do.

So I started about a dozen different posts, in my head and on paper. I tried. I really did. To write something touching or eloquent or provocative or even readable.

But the voice in my head sounded like Charlie Brown’s teacher.

Wah-wa-wah-wa-wah.

I was defeated by the one thing that trumps inspiration. It puts basic intelligence in a headlock and flushes all my emotional energy right down the toilet. It squeezes my physical body like a dish rag, until I am literally begging for relief. It is the one thing that rules them all.

Sleep.

Specifically, a desperate lack of sleep.

430amThe boy has discovered that he can escape his play pen at nap and bedtime. So he does. Over and over and over again. Apparently, this is so much more fun than actually sleeping. He cruises right past tired (which is a sweet time of eye rubbing and snuggling and big yawns) right into over-tired (which involves frantic hyperactivity, screeching at the top of his lungs and dramatic tantrums).

We tried everything. Rocking, singing, cuddling, co-sleeping, absolute quiet, ignoring him, gentle discipline, cough syrup, putting him down early, staying up late, skipping nap, liquid melatonin, begging, yelling, praying… we asked for ideas on Facebook. We even drove into the city to buy a tent to put over his playpen (which he broke in about 5 minutes). In the end, we spent hours and hours holding him in his bed until he fell asleep. Every nap. And every bedtime.

One night we played this game until 4:30 am. By that time, both he and I were crying.

I am barely human after 3 am.

Naturally, he wakes up at 7 am. Every morning. No matter what.

This changed the trajectory of our family holiday. Glen and I barely saw each other. I barely had time to shower, much less think or write or create. We didn’t tackle nearly as many activities as we had planned. We weren’t as witty or interesting or wow-look-how-cool-they-still-are-even-though-they-have-such-a-chaotic-brood-of-children as we had planned.

I’m not going to lie. These are the times I wonder… what have we gotten ourselves into? I’m not nearly as calm and patient and put-together as I hoped I’d be. I’m not the Mom I should be. I rely on DVDs and iPhone games and counting down the minutes until nap time.

And the selfish part of me resents all those people relaxing in the Banff Hot Springs while we usher two screaming, poopy children back out after the least relaxing 3 minutes of our day. And I wonder if I’ll ever finish a conversation at a family gathering without darting away to rescue someone’s purse or flower arrangement or too-close-to-the-edge-of-the-table drink. And I’m tired. So incredibly tired. All the time.

But.

And here’s the part that matters, even though it’s not all that touching or eloquent or provocative.

For every miserable, smelly, irritating, exhausting challenge they bring into our life, there is a heart warming, sweet, wonderful, life affirming moment that makes it all worthwhile.

At 4:30 am, I cried tears of frustration as the boy screamed and fussed. In his thrashing he managed to twist himself out of my arms and smash his head against the wall on the way down. The sound just makes me feel sick. It was a low point.

He immediately stopped screaming and fighting and scrambled into my arms. “Mama! Mama! Mama!” Rubbing his face into my neck while I checked for a lump and kissed it better. He stroked my hair and wrapped his legs around my waist and his eyes finally, FINALLY closed.

I guess I’m easy to please. Because that little cuddle made the whole wretched night worth it.

He’s still my favourite boy in the whole world.

So here’s us, home to recover from our “vacation” and not a moment too soon.


Mommy’s Superpower

hero signThe ability to fly.

That’s my answer. To that classic nerd conversation starter: If you could have any superpower, what would it be?

Invisibility? Super Speed? Visions of the Future?

I can see how each one would enhance my parenting. Invisible Mom knows exactly who started it, and her children would be motivated to behave even when they are “alone.” Super Speed Homemaker gets more done in a few minutes than the rest of us in an entire day, and still has time to watch her favourite Food Network show. Psychic Mama can prevent the tantrum/fight/locking-keys-in-the-van/decorating-the-walls-with-sharpies BEFORE it even happens.

Sadly, none of these are my actual superpower.

That’s right. I have a special strength that allows me to perform beyond normal human parameters. It empowers the whole household to run smoothly (okay, smooth-er). It helps me endure when my strength is almost gone. It carries the weight of our whole family without breaking a sweat.

Routine is my superpower.

It’s not the sexiest, most exciting one out there. And it doesn’t require a cape or comic book inspired costume (though I’m not ruling that out). But I promise you, it packs a wallop!

I brush my teeth every morning. I don’t think about it. I don’t have to plan. I simply do the same thing, at the same time, every day. My lack of morning breath and significantly fewer cavities may not count as “saving a damsel in distress,” but a similar process also allows me to take daily medication and feed my children and keep my house (relatively) tidy and get our crazy family out the door each day. All these add up to a pretty heroic feat.

No matter what your age or stage or particular brand of dysfunction, you too can harness the power of routine! If you happen to have children, it can be a lifesaver. If you happen to have children with special needs, it’s an absolute necessity. Here’s why:

Routine frees up valuable time and energy.

Remember science class when you learned about levers and fulcrums and how they allow you to lift a heavy load with less effort? Routine is like that. As you shift behaviour from “intentional” into “something we do without even thinking about it,” you are able to do more, with less effort.

Get out the door in the morning. Keep the household mess from coming to life and eating us whole. Make bedtime and sleep time mean the same thing (we’re getting there).

I don’t know about you, but I need all the time and energy I can get my hands on. Trying to remember every little thing that needs doing, reacting to behavioural problems, and doing everything myself gets exhausting. Routines simplify life, prevent problems and empower children (and spouses, let’s be honest) to keep things going.

Routine makes life feel safe.

Secure children (and adults, FYI) know what to expect from their world. The stress of wondering what will happen next, and if I will-like-it/be-able-to-handle-it/am-entitled-to-watch-more-tv-right-now-instead, makes for grumpier children and parents. All children, even young toddlers, flourish when they can predict a first/then schedule and simple cause/effect.

For instance, when you get home from school you must sit on the potty, THEN you can have a snack. First comes pajamas, THEN music, rocking, cuddle and finally bed. If you throw your plate on the floor, THEN you lose it. If you do a cute dance and smile really big, THEN you get attention. If you do all your chores without complaining, THEN you can go out and play. If you do all the dishes and clean the kitchen, THEN your wife will be much more likely to give you a massage.

We’ve used pictures and symbols to reinforce routines with our children. B had a long strip of velcro on the wall; she had a picture of each morning task stuck up there (thank you Boardmaker software and Aunt Emily), and each time she finished a task she would put it in the “Finished” box at the bottom. We put new ones up for the afternoon and then a batch for before bed. She no longer needs such a detailed routine aid, but at the time, it gave her the sense of control she needed and made necessary transitions productive and less like a scene from the WWE.

Routine is inevitable.

Systems and structure aren’t everyone’s cup of tea. There are some weirdos people who prefer to wing it, to live reactively spontaneously. That may work for you in most areas, but everyone has some routines, whether we choose to or not. The unintentional, destructive ones often go by the name: bad habits.

I have just as many negative routines as positive. Sleeping until the last possible second, even though I know it’ll make our whole day much more rushed. The fight with C about proper outerwear on every rainy/cold/day-that-ends-in-y day. Eating a snack before bedtime, so it will be converted directly into fat. There is a dark side to every superpower: we are our own arch enemies.

The best way to conquer bad habits is to replace them. If you can figure out a positive routine which will supplant the destructive one, you are halfway there (you’ll have to read an article about willpower somewhere else, since it is NOT my superpower).

Routine is a servant, not a master.

This is where routine can get a bad rap. Especially from people who either a) don’t understand it or b) have an unnatural fear of change. When you are learning to cook you need to follow the recipe closely, but once you get the hang of it you can be creative, change things up, all while staying true to the spirit of the dish. In the same way, routines are not set in stone. Once they are established, they can be stretched, tweaked, negotiated and even temporarily suspended until they work for you.

Routines are a tool, not a destination. Make a plan. Try it out. Give it time to sink in. If it doesn’t make life easier, scrap it and start again.

So here’s me, saving the world one chore chart at a time!


Just Like Everybody Else

“Just like everybody else,” they say. It’s a battle cry and finish line and gold standard all rolled into one. The underlying assumption is that anything else is wrong: a shameful defeat.

It’s easy to get sucked in. To begin to measure my parenting not by how kind, cooperative, creative or unique my child is, but by how much they conform to their age-mates. Especially if they happen to have special needs.

Inclusion has become a religion these days. As if sitting in a room full of typical children the exact same age, following the same curriculum, with as few adjustments as possible, is the measure of a good education. I’ve met both educators and parents so enamoured with the concept that they refuse to accept the limitations of the philosophy.

Fortunately, the staff at our school have a different goal in mind: what works. What works for B. What works for our family. What works for the staff and the other children in her class.

Grade 3 has been a struggle. And when our favourite SEA (special education assistant) left, it was even worse. Her classmates love her, like a cute little mascot. They pat her head and give her hugs and try to carry her around. In a bid for attention (and out of boredom), she caused all sorts of disruption: talking out of turn, pulling her shirt over her head, poking friends and throwing herself on the ground in a tantrum until she had to be removed. Her only real learning this year took place in the back corner of the room with her SEA and the school iPad. It just wasn’t working.

Along the way, they discovered that she fit seamlessly into the kindergarten class. I’m sure it was out of frustration that she began to spend more and more time there. In this class she is doing the same work as the other kids. She can keep up and even excel in some subjects. She has meaningful conversations with her playmates. She can participate in their play (as more than just a prop). She requires little support to get through the day. This class is developmentally appropriate for her and we want her to stay.

It works for everyone, except the school district, which is reluctant to step outside the traditional inclusion model. They have given grudging allowance as long as she still connects with her Grade 3 class regularly and is officially on that attendance roll. Apparently what matters to them is not what she needs, but how many birthdays she has under her belt. Inclusion trumps everything else.

I want the same thing for B that I want for all my kids. A happy, safe childhood and the development of meaningful life skills along the way. In Kindergarten she is included, she is learning and she is happy, what does it matter what grade? Kindergarten is where she needs to be right now. I am endlessly grateful for a resource teacher and staff who are willing to fight for that.

My daughter is not just like everybody else. It is both her struggle and her strength. It will not help her to deny or obscure or try to avoid this. I operate here in reality, because I am not afraid that she is less. I am absolutely sure of her worth.

I’m not going to pretend that Down Syndrome is a blessing we eagerly embrace. I’ve met some who feel this way and I just don’t get that. “What God intended,” they say, as if cognitive disability and health problems and speech delays and lifelong struggle are comparable to height or hair colour. The world is full of sickness and disease and disorder. That God allows it does not make it a good thing. It is what it is.

My daughter is not remarkable BECAUSE of Down Syndrome. She is remarkable because of HER. The sweet, determined, spunky firecracker that shines brighter because she has to.

So here’s me, seeing the value of inclusion, but only when it helps. Because, there is no shame in being different.

How has being different served you well in your own life?


Little Boxes

Little boxes on the hillside,

little boxes made of ticky tacky,

little boxes on the hillside,

little boxes all the same…

And the people in the houses

went to the university

where they were put in boxes

and they came out all the same…

My life is filled with boxes. Boxes of toys and clothes and diapers and household products from Costco. Boxes of time in Microsoft Outlook, colour coded for each child with overlapping commitments. Boxes to check for another damn assessment.

The boxes keep us together. They bring order out of chaos. They are manageable. They are safe.

There are some boxes, not constructed with cardboard or computer code or even pencil strokes, which order our life as well. Boxes full of 8-year-olds who sit in their desk all day and listen to their teacher and keep their hands to themselves. Boxes of children who climb stairs one foot at a time and ride bikes and jump rope. Boxes of car keys and university applications and grandchildren.

It is everything we expect from life.

Then it happens. A child who simply won’t fit into our comfortable boxes. She is fun and interesting and determined and charming and challenging and not at all box-friendly.

So we try to construct new boxes for her. New expectations. We read books and go to workshops and join support groups. Special boxes, diagnostic boxes, supportive boxes, therapeutic boxes… all very good boxes.

It’s hard work tracking down, even building from scratch, so many different boxes. While the rest of the world takes their pre-fabricated, standard boxes for granted.

Then it happens again. And again. And again. She refuses to stay in the box. She is unpredictable and sweet and moody and unique and not at all box-friendly.

In a world full of boxes, she stands out.

And the world can’t help but take notice and smile.

Boxes are kind of boring after all.

So here’s me, celebrating all the Outside-the-Box beauty Down Syndrome brings to my life. This week is National Down Syndrome Awareness Week (Nov 1-7).


Cutting the Adoption Strings

I left the boy in Sunday School for the first time this week.

He was fine. He gave me a kiss goodbye and was immediately distracted by cars and friends and buckets of toys to be dumped out. He played with trains and babbled happily to the teacher. He put stickers on a page and sat in the circle for story time.

I should have been happy. It was the first service I sat through in months. A rare chance for Glen and I to be WITHOUT the littles: holding hands, sitting with the grownups, listening without distraction, without drama or tantrums or grabby, sticky hands on my face.

But I cried at the door. I lingered behind all the other parents. I felt sick going down the stairs. And I choked on the songs we sang.

Doesn’t he need me? What if he does need me and I’m not there? Is it too soon? Am I compromising attachment? Have I been hovering too much? Will they really call at the first sign of sadness? What is wrong with me?

I don’t stress about my other kids this way. Not even B with her special needs and behavioural issues and one-on-one helper and pull-ups at age 8. I know them. I know what they can handle; what to expect from them and for them. I trust my instincts.

But the boy is new. I love him every bit as much as my other kids. But I don’t know him the way I know his sisters. The four months we’ve had together have made a huge difference. But I haven’t been raising him these past two years. And the instincts just aren’t there.

Or maybe they are there, but I question too much to hear what they have to say. I wonder about the traumas he’s been through, the adoption itself, his medical issues, his temperament and personality, and what his version of “normal” is supposed to be. When things go wrong, I panic. When things go well, I doubt.

The rule of thumb for adoption is: however long you were apart from your child, that is how long it will take to feel that seamless sense of belonging. That means almost two years of adjustment – for me! So much of our focus has been on making HIM feel safe and loved and truly at home with us. But it cuts both ways.

Those first weeks felt like a really long babysitting job. I had to keep reminding myself that I am the Mom. As wonderful and magical and God-ordained as adoption is, it is not a natural situation. My boy is not home-grown, and transplants take time.

We are adjusting and growing together every day: sleepy morning cuddles, dancing to Jukebox oldies in the living room, ‘helping’ me clean the floor… He fits. This IS where he belongs. And someday I won’t even remember life without him.

Until then, parenting isn’t quite the same. My emotions run high and my confidence is low and my big 2-year-old boy gets treated like a baby sometimes.

So here’s me, having a little trouble cutting the apron strings.

Linking up to The Parent Hood for the first time!


The Underwear Crisis

She’s captain of her own destiny. Rebel with a cause. Trendsetter?

She’s the kid running around our house with a bare naked bum.

But the oppressive forces of conformity (a.k.a. Mom) continue to insist that wearing panties is NOT optional. Pants, skirts and dresses are also strongly encouraged.

Before I alienate all the nudists who may someday read this blog post, let me clarify that nakedness is not the real issue. In fact, naked is an improvement!

My soon-to-be 8-year-old is deeply committed to pull-ups and diapers. Our keenly tuned parenting instincts tell us that these are not really the “thing-to-wear” to grade 3.

Of course, we are not completely freaking out; as parents of a special needs child we know that developmental timetables are for other people. Sure, we try for socially appropriate, but we accept her where she’s at.

BUT she is fully capable of keeping her beloved pull-up dry ALL DAY (especially when chocolate is provided as rewards). She has low muscle tone and this has only been possible in the last year. We must diligently remind (cough*force*cough) her to “try” several times a day. BUT after 5 long years of potty training, IT IS POSSIBLE.

The last time we made a concerted panty effort, it was a massive failure. She would sit on the toilet for long stretches at a time: reading, singing, talking to herself… but the minute I pulled on those panties she would pee like a race horse. The triumphant smirk on her face did not endear her to me at the time. We tried to wait it out, for several days, but apparently she has a much better tolerance for puddles of urine than we do. So back to pull-ups we went, and immediately she was dry the whole day. At the time I proclaimed that she could wear pull ups to High School for all I cared (this is the time we refer to as “potty training burn out”).

I have no doubt she can easily slay this dragon if she simply decides SHE wants to. So a very special reward has been promised for the day she keeps panties dry ALL DAY LONG.

But before we can reach this triumphant day, we must conquer Step 1: put panties on.

It seems so simple. We have a range of colours and styles to choose from. We have padded training panties. We have Hello Kitty panties. We have butterfly panties. We EVEN have Disney Princess panties!

Attempting to harness the power of peer pressure, we celebrate the universality of underwear. Mommy wears panties, L wears panties, C wears panties, EVEN Daddy wears panties. Manly, manly panties to be sure, but as far as B is concerned, EVERYONE wears panties. If we’ve ever met you, chances are we have assured B that you also wear panties. Ginny wears panties, Lenny wears panties, Olivia wears panties… The neighbour who just waved to you – panties. That man who delivered our morning paper – panties.

I can understand where she’s coming from. Wearing panties seems risky and potentially messy. What if she has to go right in the middle of a fascinating playtime? What if she decides that the toilet downstairs looks/smells/vibes slightly wrong at that crucial moment? Despite the many upsides of panty wearing, she prefers the familiar and the easy. I can relate.

As understanding as I am, this IS happening. I have written it and thus it shall BE.

Let the screaming and wailing and body-slumping-over-like-a-corpse begin. And each pair of panties which are removed and shoved into a kitchen cupboard/under-the-bed/behind-the-dresser shall be retrieved and PUT BACK ON. And baby brother’s diapers shall be moved to a higher shelf so she will stop trying to put them on. And I shall not be moved when she tells me she is “so, so sad” (okay, fine, I was moved, but I sucked it up and put on my no-nonsense face).

And each time she pees in the toilet we will beam with pride and praise her effusively and feed her a chocolate (and one for mom too, because this has been a tough morning).

So here’s me, wearing MY big girl panties.

By the end of today we had 3 accidents, but twice as many successes. The underwear tyrants shall prevail! Hoo-rah.


P.S. Did I Mention…

I have a terrible sense of direction. Even in familiar situations, I can get completely turned around. I can handle “Left” and “Right”, but if you try to tell me “East” or “West” it makes me laugh.

You may as well be speaking Mermish.

Once I picked a friend up from the train, got distracted talking, and turned the wrong way onto the highway. In my defense, it had been a long time since I’d seen him and we were having a Great Discussion. After 1 1/2 hours I realized that we should have been home by now; we had to turn around and didn’t get home until 3 hours later.

I’ve adapted. I am quick to ask for directions. I leave a little extra “getting lost” time when I go to a new place. I don’t panic, just calmly turn around again, and again, and again, until I finally get where I’m going. Or call Glen in tears, cursing the creators of GPS and the idiots at Mapquest, when I’m mostly just mad at myself.

We all have abilities AND disabilities. Some are more obvious than others, but everyone has both. There is no perfect human specimen (and if there was, who would want to be around such an obnoxious know-it-all?). We all try to maximize our strengths and struggle through our weaknesses. And often it is our struggles which form the Very Best Part of who we are. God likes to use our DISabilities most of all.

Our children are the same. We love them for Who They Are, not What They Can Do. In fact, their disabilities are part of their unique make up. And while we wish life were easier, we love even those parts too.

All our children have Special Needs.

L needs to be reminded to let things go, to take risks and to quit bugging her sister.

C needs help to regulate her emotions, to behave selflessly and to not let her sister bug her.

B takes longer to learn new things, has low muscle tone and a speech delay (aka – Down Syndrome).

S was born 3 months early, he has a rare genetic syndrome and a moderate hearing loss.

The truth is, we don’t know the extent of our new son’s special needs, but he does have them. We haven’t spoken about them to many people, because, to us, they are beside the point.

Oh, I know they will very much affect our lives. We have researched and continue to do so. He is doing AMAZINGLY WELL so far; his developmental assessments use words like “surprising” and “remarkable”, especially about his cognitive abilities. But he will have learning disabilities his whole life. He will take a longer to catch up in milestones. He may never be “just like everyone else.”

But so what?

He is our son and that is the most SPECIAL thing about him.

If you are person who prays, please pray for our boy tomorrow. He is having surgery on his skull. They assure us that this is a fairly common procedure with quick recovery time, but it is still upsetting. Especially since we can’t be there with him every step of the way. He needs familiar people around him and, as much as we love him already, we are strangers.

So here’s me, praying.


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