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:)

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18 thoughts on “What It’s Like

  1. You’re right. It’s hard, it’s complicated, it’s exhausting and it’s incredibly lonely to raise a child with special needs. Its also the most important thing I do and I would guess, that you do as well.
    You were such an incredible therapist to Ben. We will always be grateful to you for your genuine commitment to him and our family. So, on those extremely tough days, and I know there are more of them than easy ones, take solace in the fact that you are more skilled than you think, you are stronger than you think, and you are teaching more than you think.

    I admire you and your family for taking in a special needs child. It takes a tremendous amount of strength and love. And even through the tantrums and tears, your son loves you for it too.

    Angela

    • Awww thanks Angela:) I miss Ben and your family, you guys are amazing and I learned so much from all of you and for that I am so grateful. Your words are so sweet and mean a lot to me, thank you so much. And yes, it’s the most amazingly important thing I do;)

    • Thanks Savannah. I also work with kids with special needs and it’s been quite the journey and eye opening experience being on ‘the other side’. Makes me understand so much more of what the families I work with face everyday.

    • Thanks so much…didn’t really come out how I had it in my head…hope it didn’t come across whinny or poor me but I did want to be honest. Thank goodness for those awesome moments that carry me through the tough days!

  2. Thanks for sharing your experience. It IS lonely and difficult sometimes. Actually, a lot of the time. So it’s really reassuring when someone else reflects back my reality – good and bad. I can relate to the never being able to relax on the sidelines and also to the celebration dance of a no hitting day.

  3. I have nothing but admiration for you. Not only for the fact that you are parenting a child with a disability and early life trauma, but because you can be so honest about how hard that is. I truly believe that by sharing our tough times with others we offer and support and understanding. I think of you as an amazing mum who I constantly learn from. Thank you for sharing on #WASO

    • Thanks Sarah, I find the same in others’ writing and get so much from them (including YOU!) that I try to do the same. It’s hard to be honest, and I probably held back a bit about how much it just sucks some days! Thanks so much for your lovely thoughts as always.

  4. What an amazing post 🙂

    It’s been a while since I’ve stopped by your blog and I don’t know if you remember me. I was in training about the same time as you and waiting for our match last I wrote. In December we were matched with our boys, and what a ride it’s been since then. I’ve thought the thoughts in this post a lot, and didn’t know how to sum it up, but you did so perfectly.

    (We were matched with siblings, 5 and 6, with speech and motor delays, cognitive issues, and trauma, but also with lots of love and affection and sweetness 🙂 )

  5. Thank you so much, Lindsay! My kids are going to a birthday party today, and I realized it’s the first one we’ve been invited to in about a year….and the child is another adopted child. I think the not having much left for other people is the most difficult part for me. As humans, I think we all love to give. We find our identity in being useful and helpful. Right now, I’m limited to being useful to the five other people in my house….and I pretty much suck at that. Thank you again for sharing!

    • It’s so hard to have enough left over at the end of the day for anything extra, including ourselves some days. I hope the birthday party went well and there are many more to come:)

      BTW, you are far from sucking!!!

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