The Box

Jonathan has officially thrown me off of all of what I know about children and disabilities.

I have written before how between Gord and I, we should have this down to a science; I know disability, it’s my job and I think I’m pretty darn good at my job. But throw in adoption dynamics and it blurs my vision. Thrown in emotion and some days I feel blind.

But I can handle a little blurriness. I am slowly swimming my way through and getting to know this incredible little boy and all his quirks. I’m failing and making mistakes and retrying…and retrying and retrying again. And sometimes we both learn and move forward.

Day to day it sometimes can be too much, but when I step back and look at the bigger picture, we are doing it; we are changing old patterns and behaviours and seeing this kind sweet boy grow and start to figure out this world (and let’s not even start the conversation of what I’ve learned too).

It’s hard. He’s hard. But I feel like I know him, what he’s capable of, what he needs and doesn’t need. For the most part anyway.
I know disability, I’ve learned (am learning) very quickly attachment and all it’s ugliness.

But then there are other people’s opinions. There are doctors, counselors, school staff, SLP’s, aides, and daycare staff. To name a few.

Between the ‘whoa, uh, you’ve got your hands full’ comments and ‘you can tell, he’s incredibly smart’ and the ‘he’s about X amount delayed in these areas’ and ‘he’s doing so well, I can understand him so much better’ and ‘oh wow! we got a lot to work with here’ things don’t just get blurry but they get down right hard to define.

Jonathan has a disability. He is Deaf. Period.

Jonathan has a history that has given him some behaviours and challenges that other kids don’t have. Period.

I know this to be true. It is fact. But how much it impacts him is becoming more and more of a grey area.
Conflicting comments, opinions, reactions…it all makes me question his needs and abilities and what I know.

Some people don’t bat an eyelash, which is exactly what you hope for. For example, we met a new day care, they asked a few questions about his hearing, gave a few suggestions about how they could maybe support him better but it was an easy breezy yes we have a spot when would you like to start conversation. The end. Exactly what I had hoped for but wasn’t expecting to find.

So are his needs really a big deal? Am I making them a bigger deal than they are because of my own experiences?

Then we get the complete opposite messages – He’s in a program for kids with special needs, he gets special funding because of his needs. We get counseling and play therapy because of his needs and we are registering him in a specialized kindergarten program instead of our school up the road because of his needs and we can’t just have Joe next door baby sit because of his needs.

So yes, he undoubtedly needs some different approaches and programing and help. It’s right before our eyes.

Clearly this is my problem; he’s not fitting in my disability box.

And a part of me likes that.

It’s challenging me, it’s changing me. It makes me think and be uncomfortable and we all need that from time to time. It’s how we grow and learn become better. Better parents, better at our jobs, better partners and friends.

It is hard work. I am not able to pinpoint how I feel about labeling or defining his 4 (almost 5!) years of little history. It is in fact not so obvious what he needs, but a constant guessing game of reading him and testing ideas and strategies, and starting over again and again. What fits today may not fit tomorrow and in his own little, sometimes shouty way, he’ll let me know that what I’m doing ain’t his cup of tea.

I am a planner. A list connoisseur. I like order and predictable, with a little side of spontaneity and spice on the side…but wrapped up in a nice box that I can clearly define. But I will do my best to embrace this new challenge. I will try to think not so box-ish.

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3 thoughts on “The Box

  1. Good for you. It’s not easy to have everything you know and understand challenged. And our kids don’t half like to through us curve balls to challenge even further don’t they?!

    And I’m so grateful to you for sharing your feelings and thoughts on this…you kinda pretty much described me at the end there…planner, list-maker, with a bit of spontaneity thrown in, and I’m pleased to know I’m not on my own in struggling with the bits that fall outside of those prettily wrapped, festooned with ribbons, gorgeous looking boxes. We get colour, bells and whistles in other parts of our life!

    Thanks for linking up with the Weekly Adoption Shout Out x

    • Thanks Vicki:) It’s tricky, because the one thing I know about disability is that it’s not static; so much is constantly changing and these kids are constantly challenging us and amazing us but it’s much harder to practice this philosophy day to day than preach it! I guess I should apply this idea to society as well and their perceptions of disability – always challenging but always amazing me!!!

  2. I, too, have been amazed by how much actual parenting challenges everything I thought I knew from years of professional experience – it’s a definite learning curve!
    #WASO

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