Not So Little Anymore

The few weeks I’ve been noticing how Jonathan isn’t so little anymore.

He has grown up in so many ways in the two years since he came to us. His chubby cheeks have disappeared, he’s taller, he’s so heavy I can barely lift him (but I still do because I love it:)  He’s also calmer (that could be a combo mix of meds and maturity…?) and overall happier. He listens so much more, he’s less aggressive, and more independent, although he’ll still ask for help with things I know he can do but he just wants my attention and I’m mostly happy to give it.

His speech, oh my word his speech. I’ve spent a lot of time lately watching videos of him two years ago and ones of him recently. In the videos he’s singing or telling a story and 2 years ago it was incomprehensible, if you weren’t there you wouldn’t know what he was talking about. I remember having to interpret constantly for friends what he was saying. Now, that doesn’t happen. You can understand 90% of what he is saying.

The other night while tucking him into bed he said to me “mummy, why did i scratch you?” First, where the heck did that come from? And second, the last time he got to the point of restraining and he scratched me was 7 months ago. So much growth in so many ways.

These past couple weeks there’s a tiny voice that says “maybe we could do it again…” But I think that’s more the missing the preschool years (my favourite) and reflecting on how far he’s come, how far we’ve all come. But I know we won’t adopt again, it’s a looong hard journey that is not in our cards. For now I will just try to enjoy this new phase and period of relative calmness, and workout harder so I can pick him up a little bit longer:)

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(Fall 2012 and Fall 2014 – where did my little chubby cheeked boy go?!)

Sad

Jonathan and I just finished one of our epic struggles. Screaming, scratching, kicking, biting, pinching, hitting, spitting…for about an hour this went on.

All because I told him it was time to clean up his books and get ready for bed.

He had a look of terror in his eyes when I held back his legs or arms from hurting me. I’ve never seen this look before and I don’t know if it’s because his CI’s were off at this point or what was happening in his head.

When it was all done, and books were cleaned up, we sat on his bed and I explained to him why I thought he was so angry. I told him that when he was a baby and a little little boy, the grownups he lived with, until Monique (his last foster mom), didn’t take very good care of him. And he nodded like he knew.

And then I started sobbing.

I am so sad for this little boy who I love so much. He wants to be good, I know he does, but he can’t sometimes because of all the garbage that he had to go through. He is so confused and mixed up about love and safety and being a kid that he doesn’t know which way is up sometimes. And so I cried. And I cried hard, right in front of him. I couldn’t stop myself.

He looked at me kind of funny and asked if I was sad. I told him I was very sad that the grown ups who were suppose to take care of him didn’t,and I was that he was so angry, but I was also so happy that he was my boy.

I gave him some extra hugs and he was so exhausted he was asleep within a couple of minutes.

Man, adoption just really really sucks sometimes.

Excitement

There is a real clear pattern emerging with Jonathan; anything that is really exciting is too much to handle and he melts into one hot mess.

He’s sassy, he’s rude, he’s whinny, he’s very reactive. He just doesn’t know where to put all that energy and it bubbles and boils over the top until he’s screaming and thrashing out and I’m thinking drinking is a very reasonable coping mechanism.

As soon as the exciting thing has begun, and during and once it is complete, everything is hunkydorey, a-o-k, back to regular scheduled programming.

For a kid who can barely regulate himself on a mundane day, it’s easy to see how the blips of special school trips and birthdays can throw him over the edge.

Thank goodness we are generally boring people and we can continue to teach the everyday regulation (and by everyday I mean every. single. day…every hour…every minute), and in time hopefully be able to handle the blips a little better.

Now, somebody please pass the chips. And a beer.

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Mindfulness

It’s been a while since I’ve written. Anything.

I’ve been trying to be more mindful the last month by trying being away from the computer, put my phone down more often (ok, clearly I still always have it on me and take tons of pictures but I’m trying not to endless scroll thorough feeds) and sometimes, sometimes, even just sit. Gasp! And man oh man is it hard.

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Life was feeling too out of control – all was well and good, but everything was just too busy. Including my brain and it was starting to hurt.

Home has been fantastic; Jonathan has been rockin’ it at school, daycare and home (mostly). There’s a new consistency in his behaviour and he’s been super happy. Anthony is also doing well and Gord and I are both doing things we love outside of work like gardening and playing music. We’ve also started meeting with an ASL tutor and I’m becoming more involved with a local organization that supports families who have experienced hearing loss and deafness.

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Throw in some nice weather and you’ve suddenly also got parks to visit and hikes to do and a yard to take care of and flowers to water and cars to wash and bikes to ride…and then before you know it, the day is done.

Work has also been fantastic; I’ve been facing fears and doing presentations, attending amazing conferences and doing lots of great program planning. But it’s busy and brain consuming.

There’s so much goodness happening right now, yet not enough time for everything, somethings have needed to be sacrificed; like a clean house and swapping dressers for laundry baskets (it just never seems to make it from the basket to the drawers anymore and I gotta say it’s so much more efficient to cut out the middle man). And writing. And although I have let the first two go pretty easily I’ve missed writing. I’ve missed my little adoption community.

I’ve been trying everyday to just sit and let my mind wander. Which I gotta tell ya is real tricky. I’m happy with myself if I can do it for just a couple of minutes. To be able to sit and not be on my phone, make a to do list, talk to or think about Jonathan or anything else. Just be. Be conscious of my breathing, what I see and what I hear. I must say I’m not very good at it but I’m trying.

The next couple of months show no sign of slowing down as we plan to pack in as much summer as we can. We have lots of visitors heading our way, summer camps, new routines, hikes to do and beautiful weather to enjoy. I hope, however, with these busy summer days also come a more laid back pace and more writing. And sitting. And just being.

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What It’s Like

I know that raising any child is hard work. I also know that raising a child with special needs can suck every ounce of patience, kindness and understanding from you. Having a child with a disability sometimes feels like having 10 kids.

I struggle between saying having a child with a disability is just like having any other child because I want our wee one to be seen as equal, and in so many ways he is…except not…although it’s kinda the same…but it’s really not…

It’s complicated.
It’s hard.

There are many articles written that briefly touch on how difficult it is to raise children with special needs, but in the end they skim over the dark and dirty parts and just emphasize how amazing this journey is. They talk about how their child teaches them every day not the other way around and how beautifully fantastic run through a field of daisy’s under a warm summer sun in a flowy dress and all is well in the whole wide world and we can overcome anything together…sigh.

And to those people I say thank goodness for you! You give me hope and something to aspire to.

But here’s the scoop from my perspective; to get those moments (despite my negative-nancy vibe here, I do have my moments), and they really are just moments, you need to work your arse off and go through a lot of struggles on the way get there.

I love my boy, I wouldn’t change a thing about him. But the reality is he’s hard. The day-to-day nitty-gritty is tricky. Between him being deaf and his extra-large bag of trauma-luggage, some days I’m astounded he’s hasn’t given up luggin’ it all around. He’s he’s a tricky fellow to navigate. (He’s also a bit of a wonder boy…considering he didn’t start hearing, and had no language (ASL or English), until he was 4 then wowza! Boy oh boy is he a superstar. I mean, I know I’ve got a skewed view, but come on! He’s amazing right?! Side note complete, back on track…)

Having a kid with a disability, well, it can get lonely. Not only am I automatically separated and different from the other moms on the playground, but if I do happen to engage in some form of socialization that looks like a conversation in between making sure my kid is not hitting or kicking another, or running away, or is able to climb the equipment safely, I quickly realize that a) the other parent feels sorry for me b) I have nothing in common unless I want to smile and nod and lie through my teeth or c) the other parents realizes they don’t want their kid hanging around mine because while I was talking my kid pushed their kid/stole their toy/yelled at them because they weren’t chasing him ‘properly’ so the conversation ends quickly and they move along.

As a parent of a kid with special needs, I don’t get to sit on the bench at the side of the playground to have small talk and make friends. I’m on the playground helping my kid navigate the tricky business of social skills or using it as a teaching opportunity for opposites, colours, counting, language acquisition, relationship and trust building, or heavens, gasp, to have fun for 10 minutes!

It’s not just lonely for us parents in disability land; we are 7 months into kindergarten, and the number of birthday invitations, or Saturday afternoon ‘wannacometomyhouse’ invitations so far equal…drum roll…ZERO. Either nobody was born September – March or nobody wants my boy around. I’m going to guess the latter.

Having a kid with special needs is also physically and emotionally draining. It means constant being on the go. It’s learning how to be your own HR department. It’s always repeating and constantly teaching. It’s watching him struggle control himself and loose. It’s appointments, therapy, support groups, reading reading reading to learn and be able to give more, do more, try new approaches. It’s getting bit and kicked and slapped in the face one minute and turning around to make sure dinner is on the table the next. It’s needing to stick to schedule and routine like glue and deal with fall out when you deviate.

Raising a kid with special needs means having less to give to others. My cup is only so big. My bucket can only get so empty before I’m out of juice. Patience, gone. Energy, gone. It’s needing to not have a few hours, or a good night sleep, to be able to cope but a few days of away and rest to catch up with yourself and recharge and be okay for another stretch of seemingly bizarre behaviour, insecurity, language and emotional/social catch up and healing.

Raising a kid with special needs has changed my relationships with friends, with co-workers, with family. Or severed them all together. It’s effected my marriage. It makes every other relationship that I have with every single person something I have to fight to give attention and time to, or let go. It has changed me and who I thought I was in more ways than I ever thought possible and on top of it all I need to learn to navigate the new me.

I could keep going on and on but I’ll stop there.

And because I started writing this on a not so great day, but I’m finishing writing it on a much better recharging away for 2 days day, I will in fact add my very own skipping through the field under the warm sunshine moment here: Having a kid with special needs makes things all the sweeter. It makes all the victories more victorious, all the achievements more victorious. It makes the “I didn’t hit anybody today” days not just worthy of a high-five but a full on kitchen dance party with hugs and tickles and ice cream and such a great great feeling. It makes the quiet moments I get with him, the times of genuine laughter, the glimpses when he feels safe enough to relax and really show himself, his excitement in learning something new, and those moments that appear out of nowhere and when you least expect it when everything seems to be as it should and it all comes together, it makes all those things that much more amazing than anything else in the world.

Huh, I guess I just turned this into one of those sugar candy coating articles. And for the record, I’ll admit, he does teach me every day, I just don’t get the lesson until much later:)

Dear Birth Parents

Dear Birth Parents

I wish you knew how smart he is, how funny he is, how intuitive he is. How curious, and mischievous he is. And how incredibly cute he is.
I wish you knew how hard he has to fight everyday to feel secure and safe. But man does fight for it. And he’s winning.
I wish you knew how hard he tries to sound out words, what a great natural signer he is and how much he wants to learn about absolutely everything in this world.
I wish you knew how much he is loved; not just by us, but by everyone who meets him.
I wish you knew how much happiness he brings to our family.
I wish you knew how much I wanted a little one and how lucky I feel to be raising this incredible little boy.

An Interview with Anthony

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(March 2013)

I’ve been wanting to ask Anthony his thoughts on adoption for awhile now, and I finally had the opportunity this past week as we were stranded in doors by a blizzard. No school, no work, just a day to hang at home and be lazy:)

        Anthony is 11 years old and is my step son. He lives with us 50% of the time; a mixture of weekends and weekdays and we see him every morning before school when he comes for breakfast. He was the only child between Gord and I, until last year, and he is still the only child between his mom and step dad. Needless to say adopting Jonathan was a shock to his system!

        Jonathan has now been with us for 13 months and below are Anthony’s honest and unedited answers to my questions on his feelings around Jonathan and adoption.

Enjoy!

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What is the hardest thing about adopting a brother?
I like being an only child better because people pay more attention to the younger sibling.

What’s the best thing about adopting Jonathan?
That I’m not lonely anymore.

What did you think adopting was going to be like before he moved in?
I thought he would be a different age. I wanted an older sibling.

What is it actually like?
It’s interesting. It’s just that my expectations were a lot higher than they should have been. I expected him to be more mature.

What is it like having a brother with a disability?
Honestly I don’t think that being deaf is a disability. I know it effects his hearing and all, but once he has his ears (CI’s) on he can still hear and if it’s a more older person they know how to read lips and once they get older they can be more mature.

What’s the most annoying thing Jonathan does?
When he says ‘why’ repetitively.

What’s the coolest thing about Jonathan?
That he likes to play games a lot. Like hide and go seek and stuff like that.

Would you want to have another adopted brother or sister?
Yes but only if they are older, about my age and over.

Do you think it’s different having a brother who’s adopted? Or is it like any other brother?
It’s basically like any other brother, it’s just that the parents are sort of getting a head start because they are usually older than a new born.

What do you think about his birth mom and dad?
I don’t know, some parents aren’t really fit for a child like Jonathan so people shouldn’t have a child if they know they can’t take care of a child then they shouldn’t have a child.

Do you think that he’ll want to meet them one day?
Maybe if he figures out that he had a mother and father.

Do you know anybody else who has adopted brothers or sisters? Or is adopted?
One year in school there was a kid in my class who was adopted. He told us. I was like, meh, ok.

Do you have any other thoughts on adoption or Jonathan you want to share?
No. (laughs)

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(November 2012)