What You See

Now that we are out of the shock and awe phase of being new adopters and have a bit of clear space in our heads (most days), we can really see some patterns emerging with Jonathan. I’ve been watching and observing and wondering the last few months about the intention behind the things he does and really been able to see common ‘trauma’ patterns in his everyday actions.

On the outside he seems like a pretty typical kid – a happy healthy boy who is learning his way in the world, is active, asks lots of questions, wants to know how things work and loves to play. I see that too, but, there’s also underlying behaviour and patterns that I see. I know when he licks the back of his hand, quickly and almost secretly, or starts scratching at his forearms that he’s feeling worried and insecure. I know when I’m talking to him and he looks at me with one eye scrunched half shut that he’s scared or nervous he’s getting in trouble. And there are other small behaviours that unless you know his past, unless you know trauma, that you probably wouldn’t notice either.

What you see is probably just a typical 6 year old who gets excited over new and novel things. A new toy – best day ever, a new book – score, new game on his ipad – it’s like Christmas day. And in five minutes you may see a boy who appears to care less about his new things, you might even think he’s ungrateful, selfish, spoiled.

But what you may not know is that Jonathan was severely neglected for the first couple years of his life. And so what I see is a boy who moved so much and had a constant supply of ‘new to him’ toys at new foster homes that new wore off very quickly. I see a kid who had a parade of new people coming into his life who gave him new presents for being in his new place (us included), that new and novel sets off some kind of weird signal to his brain and he knows that it’s meaningless.

Very rarely is a new toy or book or game played with after the initial excitement of a few minutes wears off. My dad visited in the fall and brought a little wooden truck that they put together and played with for about an hour.  Two weeks later I hadn’t see it at all, until I found it in it’s box, in his suitcase under his bed.

What you probably see is our little rocket boy and think he is very sweet kind boy who loves his mama when he constantly throughout the day tells, shouts, signs, whispers and would send smoke signals if we let him have the matches “mummy, I love you”.

But what you may not know is that our boy had lived in 6 foster homes by the age of four and when he came to us at four and half years old, he didn’t know how to give a kiss (he’d come at you with his mouth wide open if you asked for a kiss which was cute and all but…) and he didn’t know how respond when we told him ‘I love you’. Because I do know this, what I see is a boy who now knows what love and family is and is afraid of loosing it so he needs constant reassurance that it is there. All the time. Every day. 492 times a day. And if he doesn’t get that reassurance then his anxiety increases and then his behaviour escalates and then he says it more and we enter the vicious-cycle-drive-you-crazy-if–I-hear-I-love-you-one-more-time-I-might-loose-it-zone.

What you probably see when you look at Jonathan is an amazing eater. You may see a boy who loves food and is not picky like many 6 year olds. He’ll eat sushi, salad, any fruit or vegetable, fish, meat, home cooked, take out, fast food and his new favorite – oysters. You name it, he’s all over it. You probably think we are so lucky to have such a great eater.

But what you may not know is that Jonathan spent the first couple years of his life with no consistency, no being held or rocked to sleep, no tickles and giggles and ooohs and awwws, no hearing a sound in the world, no communication and some brightly coloured koolaide in his bottle (at least that’s what it looks like from some pictures we have). So, what I see is a boy who didn’t get consistent, nutritious, good food, many times a day. Every day. I see a boy who asks what’s for dinner after breakfast because he needs reassurance that there will indeed be dinner. I see a boy who will eat and eat and eat because somewhere deep in neuroconnection land there is still something telling him that this may be the last so pack it in while you can kid. At any given meal he will eat more than his dad if we don’t control his food. While I am so grateful to have a kid that is not picky and that is adventurous in food, like most adopted families we gots food issues.

You might see a boy who is just being a kid – one who likes to keep all kinds of things that seem meaningless – bits of paper, string, fliers, random objects, garbage, bits and pieces of this and that. You may think he is very clever and imaginative to create stories and be able to play with nothing but a scrap of paper, a domino and a bread tab.

But what you may not know is that all of his worldly belongings fit in one box and one suitcase and one garbage bag when he moved in with us. And so what I see is a boy who had nothing and lost everything in his short life and so he holds onto it all. Every scrap, every bead, random card, receipt, community newsletter, craft from school, tags from new clothes etc. gets stashed away into every nook and cranny of his room.

A few days before Christmas I did a major toy/room clean up to make room for what was about to be unwrapped and threw out a whole garbage bag of paper and bits. And his room isn’t that big or even that messy. It was all stashed away in boxes and drawers and containers and bags.

There are more little trauma quirks and patterns emerging all the time and we are doing our best to calm anxieties, create safety, consistency and make sure he knows he is loved. And maybe over time these little quirks will lessen, his self regulation will increase and his confidence in himself and his place in this family will be stronger.

If you are lucky enough to have met Jonathan though, what you probably do know is that he is a smart, funny, clever, curious, helpful, polite, giving, sharing, sweet and loving, willing to try most anything adventurous boy. And I know that too.

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Beyond the Behaviour Growing Love

*I started writing this a long time ago but found it recently and finished it off. It’s amazing to think how far we’ve come in just a couple of years.

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I remember the moment that the idea of adoption turned into a real thing with a little human attached to it. It was when I first saw a picture of my son. I was in my bosses office and had just told her that we were in the process of adopting. She pulled up a picture of a little boy on her phone that she had been doing respite with and said “you should adopt him!”

It became real.

This boy needed a home, we needed a little boy. This boy had high needs, we were capable. He needed love, we had love to give.

From that day forward, a little piece of my heart started to love him. Although it would 7ish more months until we knew we were the right parents for him and it would be 9ish more months until he knew of us, the foundation was being built, very slowly, very carefully in my head and in my heart.

When it became official that we had been matched with Jonathan and we went through our panel meeting, I could feel the love grow just a tiny bit more. The night that we met him, it shifted again.

Loving him wasn’t instant, but grew over time. There wasn’t any one moment of fireworks and marching bands, but it was steady. And when I stopped and checked in with myself every so often, I could feel it changing and morphing and growing.

But man alive, was it tough.

How do you love a stranger when they scream at you, hit and kick you, bite and spit at you? How do you love a stranger when they have turned everything you know inside out and upside down, regardless of how bad you wanted it?

Slowly.

How do you love a little boy who fights you, comes between your marriage, turns you into a stranger to yourself and throws your whole world into a giant puddle of crazy?

Intentionally.

I stuffed all the ‘what have we done?’ and ‘get me outta here’ feelings as deep inside as I could and I took all the ‘I give ups’ and the ‘I can’t do it any mores’ and hid them away.

I smiled at him, hugged him and told him I loved him, even when all I was feeling was anger and exhaustion and sorry for myself.

I did it because I knew that’s what he needed. I did it because I knew my feelings were secondary to how he felt. And I knew I had to see beyond the behaviour to the boy who under it all needed and wanted to be accepted and loved.

And so, I played with him, fed and clothed him, consequenced and praised him and told him that he was safe and wanted and important. All day, everyday. That out of all the little boys in the whole world, we wanted him to be our boy.

When he continued to hit again and again, we talked about how it doesn’t matter if he hits he will still be loved, still stay in this house, still be part of our family. I may not have always felt it, but I said it. And when he ran away over and over after hurting himself I followed him every time and patiently waited while he screamed for me to go away. I did it so that in between the screams I could tell him tell him that I loved him and it was my job to make sure he was safe.

And when he went to bed at night, I cried from exhaustion and frustration and loss of sanity and identity and everything that I knew for sure. And I cried from anger towards all the people who let him down in his short life. I cried from happiness because I had my boy.

Then I got up again the next day and repeated it all.

And one day I checked in with myself and I realize that the love had grown more. My heart was bigger, stronger, more full than the last time I checked. I realized that he wasn’t a stranger any more and that it had been a few days since he screamed or hit or spit, and that he hadn’t run away when he fell down yesterday.

And so on I went, looking beyond the behaviour and growing love.

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:)

Coincidence…?

After an impromptu conversation about using drawing and interpreting kids drawings with our Clinician at work, I decided to try something with Jonathan.

That evening I sat him at the table with an array of coloured paper and different markers, crayons etc. and asked him to draw a picture of him, his family, his house. I didn’t give him any other direction and my only words after were “is there anything you want to add?” and I asked him to tell me about his drawing so I could decipher what the heck was going on.

There isn’t a lot to it; a house, the four of us, Santa, a stove. The interesting part will come in a few weeks, which after raising the topic several times during this time about family, him living here, his adoption and whatever else I can work into our conversations, I will have him do it again and we can interpret his drawings.

However, the interesting thing was after he drew his first picture and we sat down to have dinner (it was just the two of us as Gord and Anthony were out for the evening), we had our first aggression in months. I was hit and bit and he continued to go after me until I could get him to his room and hold the door shut. All because (seemingly of course) I asked him to finish his dinner.

Coincidence…?

The rest of the evening proved to be rocky; lots of not listening, being rude, crying when I said no. And it continued into the morning, at school/daycare and into the following evening.

I made sure to give some extra cuddles and love that second evening and a bit of an early bed time. We talked about sweet Jonathan and angry Jonathan and he seemed to get this idea: My sweet Jonathan is kind, listens, uses his manners. My angry Jonathan screams, cries, hits, doesn’t listen. He has brought this up over the past several days and is recognizing when he is ‘sweet Jonathan’ versus ‘angry Jonathan’.

After 2 days of unsettled behaviour he was back to his regular self. But, he randomly mentioned one morning at breakfast “I didn’t live here before”. I asked where he lived and we talked about a couple of specific people and that now he lives here forever with mum and dad. Interesting.

Coincidence…?

It all seems very interesting that this all came up from asking him to draw a picture.
Has anybody else used different types of media or ways to chat with their kids and what was the immediate fall out? Any advice would be great!

Curious to see where the next few weeks go as I push him a bit and we bring up the idea of other moms and dads and living different places.

Images and Information

I saw them. The people that neglected and confused my boy. The people that loved him, but couldn’t care for him. The people that some days I feel a hate for that I’ve never felt before.

With our adoption being granted and our adoption worker finishing up with us, she mailed us what she had left on file for Jonathan; pictures and contact information for his two brothers who live with his paternal grandparents, a cd of photos and letter from his birth mother containing their full names and address.

Gord and I huddled in our room for 5 minutes quickly reading and flipping through the pictures on my lap top while Jonathan tried desperately to get our attention by sliding things under the door and knocking every 20 seconds. We saw images that screamed neglect, and images that showed a very smiley happy beautiful boy. We shoved it all in my drawer, hiding it from confused eyes, and there it sits.

We haven’t had a chance to think much about it out loud, although I know we both are sorting it out in our heads. All that we do know is that J would be unable to understand it at this point. We are still working on ‘mom and dad chose you, we wanted you to be our boy so we adopted you’. Which is met with great anxiety and questioning and reassuring. Constantly.

The grandparents are desperate to hear from us, desperate to know about J and how he’s doing. Soon we will start email communication to assure them that all is well, but I’m not quite ready for that just yet.

For now we enter a new phase in our adoption journey. With evidence and information connecting him to his past, we have a piece of him that we haven’t until now. Names, images, a link.

More importantly, J will have information connecting him to his history and answers to questions that may arise.

Although, I can imagine this is just the beginning of having more questions than answers…

Them Mountains

There’s therapy out in them mountains (and foothills) and we are on the look out.

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We’ve not only enjoyed getting out for ourselves the past four weekends, but have notice changes with Jonathan as well, which was our main goal to begin with. Although we were just hoping to help him burn some energy, it’s effects seem to be more far reaching than that.

So far we’ve done one fairly hard hike, 2 easy/moderate hikes and an easy but loooong walk through a really huge prairie hill in the middle of our city (it’s called Nose Hill, is 11 square km and it’s one of my favourite places in Calgary)

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The changes are subtle that we are seeing in Jonathan and they could be due to other factors too – we’ve removed time outs and have been using more natural consequences and have been doing a lot more debriefing and talking. But, we are fairly certain that they might be related to our hiking.

There is a large amount of trust and confidence that he is suddenly needing to have with us and himself. He inevitably needs to rely on us; hold our hands on certain part of the trail for safety, trust we won’t let him fall as he jumps off big rocks, let us talk him through going down a steep incline and be close to him just in case but give him the room to work it out himself (it also forces him to slow down and think about where his feet are going and plan each step). The more these things happen, the more some little things are shifting.

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In the last couple weeks he has, several times, held my hand in parking lots (a rule we have) without me even asking. I just hold out my hand and he grabs on. There’s been a few times when he’s even asked or just come up and grabbed my hand while out running errands. HUGE!

He is listening better. At home that is:) Overall he’s taken things down a notch and instead of getting upset or shutting down, he’s able to listen to an explanation and accept it. WHOA!

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He’s been labelling his feelings more. We’ve been working on this so it could just be as a result of that, but we’ve been doing it for a while and nothing has come about. Since hiking he’s been able to identify being frustrated and sad a couple of times on his own.

He seems calmer on the last two hikes. He’s not full steam ahead the whole time and doesn’t need to be first the whole time. He is sometimes slowing down a bit, dragging behind, checking things out. He seems distracted occasionally but it’s a different kind of distraction – not in a ‘squirrel!’ kind of way but actually looking at things, going slow enough to see little things around him like flowers.

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Not all of these little shifts happen all the time or to their potential full outcome; they are subtle and slight and would probably go unnoticed if we weren’t looking so darn hard for them.

But, they are significant in their own way.

I’ve also really been enjoying spending this time with Jonathan. I wrote a few weeks ago how going back to work has been overwhelming. With that has come way less patience and it’s nice to put it all aside for a few hours each week and just enjoy being with him and being outside and doings something that is challenging. It’s also been fun to teach him a little bit about plants and flowers and animals as we chit chat along the way. Plus, it just feels good to be out in the sun and moving.

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I’ve made a commitment to myself and to him to get out more this fall/winter (I tend to hunker in for the winter) and keep this going. I hope the positive changes keep a-comin’ !

Side note: I started writing this the night before kindergarten started, before his little world got jostled again and thew him for a loop. Things have quickly, ahem, slide down the mountain if you will, and we are working hard to reclaim some security and safety and good behaviour. Hopefully things settle down soon again. Fingers crossed. And toes.

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Safe Space

In trying to write to the WASO theme of safe spaces, there is really only one place Jonathan feels to appear safe; home.

I’m judging his feelings of safety on times when his behaviour is slightly more calm, he’s in that ‘just right’ space to listen, and is generally more easy-going. I don’t know if that translates to feeling safe, but that’s what I’m going with.

He’s definitely more comfortable at home than other places; we can tell by his ability to (often) follow the rules and boundaries more so at home than anywhere else.

Thinking back to when he moved in, almost 10 months ago now, his volume was super loud and all he really knew what to do was run with his fire truck back and forth up and down the hall.

His ‘safety’ then was showing everybody who came by the vacuum and the fire alarms. Compulsively. Constantly. He also had to point every single fire alarm out and talk about them in every single store.

He’s definitely come a long way from there, and although he still loves his fire trucks, alarms and vacuums, he’s slightly more quiet and is able to occupy himself in others way now.

However, I don’t think it’s so much the physical space of the house that makes it safe for Jonathan, but more so it’s us.

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We have tried very hard to be consistent, to give routine and predictability. To let him know what’s happening, who’s coming and going and we’ve always followed through (ok, there has been a few times I slacked). Those things combined with love and lots of reassurance and fun have translated to safety for him.

It’s a lot of work. It’s constant work. It’s a lot of time and effort to parent this way. But the alternative is not an option we want for Jonathan. Hopefully over time he will be able to expand the number of places and people he feels safe with, but for now we will just keep focusing on us at home.