Tag Archives: Special Needs Parenting

Another Word

I’m feeling a need to write through my feelings again. After crawling into a post-cancer cocoon for the past year and a half, I’m back.

I started so many posts over the past few years. Fretted and fussed about getting “back into it” but quickly set it aside when it started to feel like pressure. I do not need more of that dreaded s-word in my life (by this I mean Should, but the other one fits too).

So here I am again WANTING to write for the first time in I can’t remember how long. Because once again I need to process my experience and nothing works quite like this. Throwing it all up against the wall to see what sticks.

Fair warning, I doubt it’s gonna be pretty, or witty, or all that inspiring. Also, there will be swearing. I swear now. I want to honour my family and my beliefs, truth, justice and the Canadian need to apologize frequently… but I’m too tired to self edit that much. Or at all.

This morning we got another official diagnosis for our little B (who remains happily in remission from leukaemia). I say little, but she’s actually 14 with all the sass and hormones that this entails. I’ve long ago made peace with the words “Down Syndrome,” “OCD” and, yes, even “cancer survivor.”

These are our words. Not who she is, but an important part of our daily life. Words that describe but do not define her.

She remains feisty and adorable, soaking up all the attention in the room. She’s challenging, very much so. She likes to be in control. She never stops talking. She’s often inappropriate – belches loudly, talks about poop, ignores people and makes us laugh every day.

She’s a lot of work. And she’s worth it!

But she wasn’t outgrowing some of the quirks that we used to chuckle over. In fact, they were getting much worse. More rigid. More controlling. More strange words and tics and coping rituals.

And while she remains an attention sponge, she has very little interest in actual friendships. Her social interactions follow specific scripts, whether they make sense or not. She continues to introduce herself and ask the names of old acquaintances, even family.

She loves imaginary play, but it sticks tightly to “the plan.” If you try to improvise or cut her scenarios short she gets very agitated. Her obsession with her favourite stuffed dogs (Pluto!), previously a helpful incentive, have become a hurdle. They’ve been banned from school. And the bus. And helping mom drive the van.

Hardest of all, she perseverates. There’s a ten dollar word for you. It sounds kind of admirable, like perseverance. According to dictionary.com it means: “to repeat something insistently or redundantly.” According to me, it is a very efficient means of causing mom to lose her ever-loving mind.

All kids do it sometimes, but B is a world champion.

Standing beside my bed in the middle of the night while I’m sleeping: “Mom, mom, mom, mom, mom, mom, mom, mom, mom, mom, mom…”
x 578 900.

Now louder and with more feeling: “ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM! ICE CREAM!…”
x 1 987 638.
(It should be noted that she is extremely lactose intolerant and not permitted ice cream these days.)

So we wondered. And we remembered the handful of voices that had suggested it in the past. And we asked questions, read articles, visited the paediatrician and the psychiatrist and then waited, waited, waited (for almost 2 years) for her turn to be assessed.

The psychologist we saw initially gave us a pretty clear (and horribly depressing when compared to every typical 14 year old girl in the world) picture of B’s cognitive ability. I hate those stupid IQ assessments and as a parent find them entirely pointless. He also cautioned us not to expect a positive diagnosis. She’s just so outgoing and engaged and nothing like the stereotype of this diagnosis we all know so well.

But stereotypes while sometimes true, can also be total bullshit. (For further proof: kids with Down syndrome are always SO happy and angelic.)

If you haven’t guessed where I’m heading with this, the developmental paediatrician we saw today said it was a slam dunk. We’ve added yet another word to our lexicon – autism.

I’m not surprised. Some studies suggest that 10% of children with Down Syndrome (DS) also have Autism (ASD). While mysterious there’s clearly a genetic link. These dual diagnosis kids often present different, seeming more social and expressive.

After years of hearing the grumbling in DS circles that the ASD families get all the money, I was hoping we could cash in on superior funding. Also, we were tired of having to explain that B isn’t just like every other cute kid with DS that teachers and workers and friends knew. Most of all, we craved the validation that something else, something more is going on, we aren’t just over-reacting and under-parenting.

I’m not surprised. I thought I’d be thrilled to hear it.

I’m not surprised. But I am strangely devastated.

It’s just another word. It describes our reality. It doesn’t change a single thing. And knowing officially will probably make things better for all of us.

But it’s another damn word. And she has so many already.

There will be a day that I need to rally and focus on possibilities, find the silver linings and tell the pretty stories. But today, today I’m just sad and angry and so fucking tired.

 

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The Boy Who Would Belong

“He’s a lucky boy” they say. As if we were doing you a favour by adopting you. What they don’t know… What we didn’t know… Is how much we would need you. To brighten our days. To keep us laughing. To soften our hearts and stretch our empathy. To shake us out of ordinary and tweak our priorities, over and over and over again.

You saved me this year. This horrible year of your sister’s cancer diagnosis and long hospital stays. I know this year was hard on you, you’re still uneasy without the whole family together under one roof. And our calm routine was shattered, which made life unpredictable and uncertain. Except for you, I could always count on you to make me smile. It’s impossible to despair with your little body wrapped around my neck, and squeals of “I missed you so so SO much mommy!” and “This is a special, special day!”

You have a nonstop, megawatt, irrepressible grin that spreads joy in your wake. You don’t walk and run through life, you hurl yourself at the world. You have a genuine sweetness, a kindness that most of us can only simulate.

This year you discovered fear, though not always in the best places (for instance, running into the road is supposed to be scary, Mario-kart characters are not). I hate to see you react with terror, though I’m proud you are learning to be brave. Best of all, I’m relieved that you turn to me, to your dad and sisters, even friends and teachers, for comfort so confidently. I promise I will always be your safe place.

You’re just a little boy, even now at five years old, you’re still my baby. I wish I wasn’t such an exhausted, overwhelmed and distracted Mom, but I hope you will never doubt how unshakeable my love for you is.

Parenting isn’t about the getting, but the rewards often come all the same. You are the answer to prayers I never put into words. You are a gift.


Happy birthday!

Love

Mom

And now, a word from your father…

Dear S,

Happy Birthday, Big Guy! 5 is a huge year – you are ready to take kindergarten by storm! (Hope they’re ready for what’s about to come their way!)

What a year it has been for you. We’ve watched you grow by leaps and bounds in front of our eyes. With age has come some wisdom. We were finally able to take down the guards from our second floor deck railings, and I haven’t caught you balancing on top of them yet!

Of course, your default speed is still set to “Go fast, think about the consequences later… or maybe never at all.” As much as it causes me gray hairs (like last summer when you escaped my eye and went missing at the State Fair for 20 minutes), as someone who tends to overthink everything, I think I actually have a little something to learn from you about seizing the moment. (But let’s not get too carried away, okay?)

You may not remember this when you get older, but it’s also been a tremendously difficult year for us, with B getting very sick and spending lots of time in hospital. For way too many nights and days, you were missing Mommy or Daddy as we took turns taking care of your sister. I’m sorry for all the time we weren’t able to spend with you Buddy. But, I’m proud of how you rolled with things, never knowing who might pick you up from preschool on any given day. You did amazingly well with all the chaos. Thanks for pitching in!

Things are going to be a bit different when you go to school. You’ll be spending more time away from home, making friends and starting to build a life of your own. I’m so excited to see where it leads you… and I promise I’ll be right beside you every step of the way.

I love you Buddy! Happy 5th Birthday my son!

Love,

Daddy

So here begins another round of birthday letters… To the world, so they will know how special you are. To the someday future you, so you will never forget.


The Terrible, Horrible, No-Good, Very-Bad Week

…or year… or life. Or maybe it just feels that way.

Sometimes when everything seems to be going wrong, and you think “at least it can’t get much worse” – that’s when life winds up and punches you. Right in the throat.

So there you are. Gasping. Stumbling. Grabbing at everything, anything you can touch. Mind spinning. Thinking… what the actual hell?

All the other people in the room seem to be breathing without any thought at all. Like it’s easy. Like they’re entitled to it.

Our reality took a turn for the laughably pathetic last week. While my daughter was in Children’s Hospital for the week, receiving a particularly nasty round of chemo, and in isolation (because of course she had a miserable cold on top of everything else), her Dad took a shift sleeping over, so that I could see my other kids and my Dad (who’d come to help out at the last minute). But mostly so I could sleep at home, in a bed – a special gift I’ve learned to cherish at this point in our journey.

I was buzzing around, tidying up, while my freshly-washed, pajama-clad boy stalled bedtime with a cookie treat. He’s easily distracted, and doesn’t always remember to chew, and on this night, he also had a miserable cough due to cold. You can see where I’m going with this? It wasn’t the first time. Probably won’t be the last.

Which was why I was pretty calm when I first noticed him choking and sputtering. “Here we go,” I thought, as he coughed up cookie pieces and mucous, then cried and vomited in my arms. I gave him both puffers. It didn’t help. He began itching at his throat and his feet, hives spreading faster and faster. That was new.

At this point I’d recruited my Dad to drive us to the ER; my daughter to fetch a new bucket and my purse. Still calm. Still old territory for us. He was still talking, as only my little chatterbox can manage while still coughing and puking.

I crouched by his seat all the way to the hospital, Mommy-auto-pilot fully engaged – first aid edition. I sent my Dad home, sure we were in for a long wait and the usual procedures. As I walked through the door I noticed he was working hard to breathe. Not good.

I interrupted the receptionist. “He’s having trouble breathing!” While he dry heaved in my arms, I juggled a bucket and purse and an increasingly heavy 4-year-old.

She used her calm, customer service voice on me, informing me that I would need to find his health care card while she finished helping the couple at the desk. The volunteer guarding the door chastised me for jumping the line. “These people were here first.”

Does no one hear my panic and repeated “He’s having trouble breathing!” – anyone?

He goes limp in my arms. I can’t wake him up. He’s still breathing, but it’s shallow.

The triage nurse calmly waves me over to another desk, pulling out the O2 sat monitor. “He’s having trouble breathing. He’s choking. He has hives…” I must have explained. I can’t remember it now.

She sprang into action after the clip took it’s reading. Waving us through. Bringing another nurse to our side.

Now there’s a bed. Now there are people everywhere. Hands and equipment and tubes everywhere. I’m surprised that they don’t push me out of the way. I’m stunned by how quiet my busy little boy is. Barely conscious.

“Is he normally this subdued?” they ask. I’m completely panicked by this question. There’s no way he’d lay quietly for any of this poking and prodding. Now he’s passed out entirely.

One of the nurses calls for someone to “bring the peds crash cart – right now!”

And that’s when the world stopped.

It must have sputtered back into existence at some point, a blur of tears and questions and steadily beeping machines. He starts fighting back, pushing the mask off his face and protesting over the IV in his hand. What a lovely sound that unhappy shriek is to my ears! I hold him as close to me as I can with all the tubes and wires and nurses in our way.

At some point they bring me a chair, which I ignore, climbing onto the very edge of the bed with him. I text my husband, “he’s okay” – not yet ready to explain how very close we came to not-okay. They’ve pumped him full of meds and oxygen, and are monitoring him closely.

The doctor comes to explain that they will be admitting him to hospital now. I ask if we can be transferred to Children’s Hospital, where his sister is already a patient. She looks at me like I must be joking. It’s only a few hours before April Fools Day, after all.

It did feel like a terribly cruel joke.

5We got to ride in an ambulance. Though he could barely breathe, the boy thought this was pretty exciting. He was also thrilled when he recognized the ‘big hospital’ which has always been a lot of fun for him to visit. Not at all happy when he realized he would not be going home and that, yes, they were going to keep this needle in his right hand and the uncomfortable prongs taped into his nose.

For two days we had both littles and both parents on the same floor of the hospital. Thank God, repeatedly, that Grandpa was back at home to take care of the teen contingent.

It took them longer than expected to wean him off of oxygen, but once they did he bounced right back. His sister was discharged the day after he was.

We’ll be back again next week.

None of this is actually happening to me. Not really. But I’m gasping all the same.

So here’s us, where we don’t take our next breath for granted.


Putting Myself in His Shoes

The Boy

boyshoes

It’s all over me. Pulling me down. Wrapping all around me. A heavy fog of numb.

bored.

…so bored.

HAVE to escape. Now! Shake it off. Break free.

Bang!

I felt that. Train + Window Pane + Bang… vibrating in my fingers, up my arm, echoing in my ears.

More!

Trains in both hands now. A tingle of energy moving from deep inside out to the very edges of me.

Bang! Bang!! BANG!!!

Jumping. Laughing. Feeling.

Hands snatch the trains from mine. Even that feels good. Anything better than the dull nothing.

Words. Close to my ear.

“…blah, blah, gentle, blah…”

I pick up the basket at my feet.

Flip.

Feeling the toys rolling off my belly, my legs, my feet… then the glorious clatter onto the floor. I make things happen. Me! I am powerful.

More! More!

Mommy bends down, pressing toys into my hand, pointing to the basket. We drop them in. Small bang. Meh.

“…blah, blah, time to go… van.”

Van! I love the van! I love to GO! Coiling my body, ready to run to the door… until it catches my eye. Catches me, body and soul.

On the edge of the table. My favourite thing. The best thing. So many buttons. So many colours and noises and games. So much everything.

iPhone

And, she’s looking away. Quick! Feet skittering across the floor, arms and legs climbing frantically, heart pounding… Got it!

“Hey!”

She sees me! Now throwing myself off the table, prize clutched to my chest, down the hallway – the chase is on! Running. Laughing. Feeling.

More! More! More!

* * *

Today is exactly 1 year since our adoption was finalized, and the boy became ours for good, forever. It’s been exhausting and overwhelming at times, but never, ever, boring. At least not for long.

It’s been pointed out that “Gotcha Day” (which many adoptive families use to describe this day) sounds creepy and vaguely kidnap-y.

“Signed the Paperwork Day” doesn’t really capture the sentiment either. Nor does “You’re Stuck With Us Now Day.” We’ve finally settled on:

“For Keeps Day.”

Definitely worth celebrating! And yes, there will be cake.

* * *

So here’s us, where we’re learning to make room for: fun, impulsive, hyperactive, sensory seeking, rough & tumble, and being a boy.

The Weekly Adoption Shout Out

Nine Years Old

5504996471Dear 9-Year-Old,

I’ve always railed against my children growing older. But none more than you. You may be a big sister and a school kid and a joke-teller and a rider of three-wheeled bikes… but you are still my baby.

You’ve gotten so tall lately. Objectively, I know that’s not true, since you aren’t even on the growth chart for your age and only hit 5th percentile on the Down Syndrome version. But each night when you climb into my lap and we sing our made-just-for-you-that-moment lullaby, you are all lanky arms and legs. When you dance with arms akimbo, they seem to stretch so far and so wide. When you “stir” the salad for dinner, you don’t even need a stool anymore. You are still my baby, but you are getting big.

Not just physically either. You are becoming more independent. You like to play on your own in your room, then tell us the story about your latest pretend, or that dream you had last night. You occasionally tidy up without being asked. You prefer to read at school with your teachers and bask in the familiar routine of listening to Mommy at home, but you’ve begun to interject a word here and there when we read Caps For Sale and Dr. Suess. When we can bribe you to read a book on your own, it is always a masterpiece in my ears – especially your silly favourite, No, David, where each page brings a new gale of uproarious laughter.

You are someone who loves to laugh. What your jokes may lack in intelligibility you more than make up for in sheer enthusiasm. I may not understand every word of the build up, but when you shout “MEATBALL!” then crumple into a fit of giggles… I can’t help but join in.

You are a gentle soul, the first of my children to pet me when I’m sick and reassure me when I’m sad. No matter how spitting mad you might get (literally spitting over and over again), it doesn’t occur to you to hurt someone. You are sensitive and have a great capacity for kindness. You are the cheerleader of the entire world – you say “Good job!” to everyone: the lady who waited on our table, the man painting the walls at school, your sister for opening the door… every classmate for every accomplishment. You offer applause at every turn. We clap a lot at our house.

In a world of pretenders, you live without masks or defenses. This isn’t always socially acceptable, but it’s often refreshing. We don’t wonder how you feel or what you want.

You are easy to love. Not always easy to parent, with your iron will and refusal to be rushed through life. But effortlessly and entirely loveable!

I don’t care if you are nine-year-old or ninety, you are still my baby.

I love you!

Happy Birthday!

Mom

And now, from Daddy…

Dear B,

How can my baby girl be 9 already? It hardly seems possible. And yet I can hardly deny it. Wherever I look, I see signs that you are growing up.

This was a year when some things that you’ve been working very hard on for a very long time really started to snap into place for you. You’re a stubborn little girl, and that comes with some challenges to be sure, but it also comes with a tenacious drive to accomplish whatever you set your mind to.

We were so excited when you brought a book home from school and read it to us for the very first time. Your favourite teacher, “Ms. Smelling” spent time with you every day at school, helping you learn how to read. We were amazed at how quickly you learned, and the proud beam on your face as you read to us showed that you knew just how big an accomplishment it was.

And then there’s potty training. We’ve been working on that for six years, and sometimes it seems like it’s never going to end! But this summer, you made up your mind: this is going to happen! We’re not done yet, but we can see that day coming… and when it comes, boy are we going to celebrate!

And that’s what’s wonderful about being your daddy. You celebrate harder than anyone I know, putting your whole body into it: singing, dancing, laughing, jumping. You are absolutely infectious; the grumpiest person in the world can’t help but smile when you’re excited. And you make your daddy so proud when you belt out Airborne songs at the top of your lungs as we drive around in the blue van!

I think Ms. Smelling said it best. She wrote a paper about you, and she expressed how we all feel about B:

“You have been and will continue to be a source of joy, humour, inspiration, and learning. You have been the greatest gift and teacher I have ever known; unknowingly you have led me to a greater understanding of what is truly important in life.”

There’s nothing more important in my life than being your daddy. I love you Becca. Happy birthday!

Love,
Daddy


Our Version of Normal

Sometimes, I forget.

As we walk hand in hand, jumping over each crack in the sidewalk, while she tugs on my arm… “Sing Mommy! Sing!”

It’s just us today. A rare Mommy-Daughter outing, with no siblings to compete with distractions.
This is sunshine and happy and me with my Good-Parent hat on.
This is the ordinary kind of awesome.
This is normal.

We walk up to the counter at Burger King
(Great Parent would have talked her into Subway, but Good Parent heard she wanted “Fies” and aimed to deliver)
Anyway, we put in our less-than-optimally-nutritious, but yummy order AND I notice the looks.

For a minute, I’m thrown. I look around and wonder what’s going on.

Sometimes, I forget.

People are staring at us with big grins and smile-y eyes. The kind of looks reserved for fluffy bunnies and newborn kittens. Awwwww… One lady nudges the guy next to her and nods in our direction.

And it clicks. Of course. Now I remember.

All my children are winsome – uniquely beautiful in their own way. But none of the others get this kind of attention.

It’s not a bad thing. Although it does reinforce my little diva’s belief that she is the Centre of the Universe (thank heaven for a little brother on that count).

It’s not a bad thing, but it does remind me, that OUR normal, isn’t exactly… well… normal-normal.

OUR normal involves extra appointments in far away places with all sorts of “oligists” (and an excuse for Mommy-Daughter time, with, perhaps, a detour to Burger King).
OUR normal looks tiny and slightly wobbly, but is fiercely determined to open the heavy doors “by mine-self” (while we wait, and wait… and wait).
OUR normal smells just a little bit off (which is why I carry pull-ups for 40 lbs+ in my purse at all times).
OUR normal sounds like my almost 9-year-old singing “Skinn-a-ma-rink-y Dink-y Dink” at the top of her lungs, while sticking her hand down her pants (and an admiring public who think she’s adorable for it).
OUR normal includes a lot of extras – extra work and extra people and extra effort… and extra attention wherever we go.
But,
it’s not a bad thing.

In fact,
Sometimes I forget.

I forget about Down Syndrome. I forget about the hassles and the heartbreaks and the headaches that inevitably come. And we just live our ordinary awesome, everyday plodding, bittersweet regular life.

Because, for us, this IS normal.

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