I spent the last few days at a friend’s cottage with my two oldest girls. I can tell you there is nothing so endearing to me, nothing that makes my heart soar more, than witnessing others being good to my children. My friend and her husband showered my kids with love, and it was a beautiful sight to behold. What the world needs more of is people who aren’t afraid to turn to another with open arms and say, I see you, even the funny bits that are sticking out that you tried to tuck in; the parts you don’t want the world to see, but that I see anyway. I see it all, and you’re okay. I love you anyway. The world needs more people like my friend and her husband who welcomed both of my daughters – and their challenging behaviours – equally, unafraid and with joy in their hearts.
To be blunt, what the world needs more of is people who aren’t afraid to mingle with kids with disabilities; who aren’t afraid or hesitant to invite a child with Down syndrome into their homes and family lives. But it doesn’t stop there either. You can’t just invite someone over and think you are bringing them in. True hospitality, like true inclusion, is about meeting every guest’s needs.
I can honestly tell you there have been many times when I’ve felt it was so much easier to just stay home with Elyse than to try and bring her over to someone else’s home or go out in public, where others may not understand or be compassionate about her outbursts. Elyse can take a long time to warm up to a new place. At this age and stage, she has some challenging behaviours that accompany her discomfort in new situations or scenarios when her needs aren’t being met. Namely, she screams. Often, she screams the word “NO,” but it can also just be a burst of sound. Sometimes she screams in my face, or the person who happens to be closest to her. She may even give a little shove. This is her way of shutting down and protesting a situation she isn’t comfortable in or happy with. I understand this about her, and I’m doing my best to accept it as her parent and to help her work through situations that are upsetting to her. But I refuse to keep her home. Life must go on, yelling or no yelling, and she has to learn to deal with new situations, because life is full of them.
There are certain people who bring Elyse comfort. Namely, Elyse relies heavily on her daddy in times of stress; he is truly her rock.
I knew, then, heading into the unknown territory of a few days at a friend’s cottage without daddy for backup was risky business, emotionally speaking for Elyse and myself. If Elyse felt lost, I alone would have to guide her back, a process with which even as her mother, I have varying degrees of success. When Elyse is feeling misunderstood, her frustration manifests itself in an angry wail. The force of her anguished voice cuts through you like a physical assertion, and I feel every bit of her pain. While I’m becoming more understanding of Elyse’s emotional outbursts, she’s doing the best she can, I don’t expect other people to understand, though I hope they will. I wanted our cottage visit to go as smoothly as possible. I wanted to be able to enjoy the experience with both Elyse and Ariel, my eldest. And I of course wanted to have a great time with my friends and their families, too.
On our way to the cottage, Elyse fell asleep hard during our late-in-the-day car ride to the boat launch where we were to meet my friend for a short boat ride over to her place before bed. I slid a sweater and lifejacket over Elyse’s lifeless body and cradled her in my arms then hoisted her up into the boat. She woke up in a daze mid-lake, but thankfully remained calm. She asked for dinner when we arrived, we fed her some cereal and then it was off to bed without much of a hitch.
With no running water in the cottage, there was the new experience of the outhouse, which Elyse took to well. Perhaps a bit too well. More on that later. When I checked on her and Ariel before I went to bed, Elyse had ditched her single bed and crawled in next to her sister. To do so, she got down from her bed, then climbed over a railing, in the dark, to squeeze herself in on her sister’s single bunk, where she fully entwined herself with her sister. Poor Ariel looked rather cramped, and though she later complained not to let Elyse sleep like that again – nevertheless, the following bedtime she offered, “come over here and you can sleep with me again, Lysie.” The world needs more big sisters like Ariel.
After breakfast on day two, the real challenge began. Elyse became fixated on the outhouse. I must have taken her a dozen times. It was as though she didn’t know what else to do with herself. I managed to get her interested in swimming and we headed down to the water. With a gentle sandy beach and a girl who loves to swim, I thought the set up could not have been more perfect. I was wrong of course, completely wrong. Elyse was beside herself. She’d suddenly lost all willingness to venture out on her own. She didn’t want me to leave her side for one minute, which was fine, except she was clinging to my neck and screaming in my face. She didn’t want to get out, she didn’t want to stay in. I wasn’t getting it quite right. After a few minutes of her yelling, I dropped her off in the shallow water where I hoped she would calm down a bit, but she only panicked after me, calling for me, “mommy, mommy, mommy!”
What is it about desperation that so forcefully pushes you in the other direction?
My friends reassured me, and sent me out on a planned swim. I couldn’t understand why Elyse was being so clingy, we had just been swimming at my parent’s house the day before. I was doing my best to be patient with her, but it was hard not to feel annoyed. This wasn’t how this day was going to go. Two of my good friends arrived with their kids during another bout of Elyse’s screaming, and finally I gave up on trying to get her to swim, and despite further protests about getting out of the water, I swaddled her in a towel away from the crowd, sat her on my lap, and tried to ascertain what the heck was wrong. When she’s worked up, this isn’t easy. “Mommy, mommy, mommy, mommy” was all I got between sobs and wails. Mommy’s right here, I told her over and over before falling silent and simply gazing out at the view.
I find when Elyse gets worked up, sometimes the best thing for me to do is just shut up, and let her get it out. I try to lead by example by remaining quiet and calm – I don’t always succeed, but I know it’s important and that Elyse isn’t acting out because she wants to, she’s acting out because she’s trying to communicate something and she’s frustrated.
Being the creature of comfort that she is, I finally got the idea to pull out a few of her favourite books and bring them down to the dock. With my friends there, and Ariel swimming in the water with the other kids, I didn’t want Elyse to try and wander back up to the cottage…or the dreaded outhouse. The books worked like a charm. She was obviously overwhelmed by the new situation, and the number of people, and giving her a favourite pastime worked wonders. She calmed herself. Elyse knows very well what she needs. After that, we had a blast. I rarely had another issue or emotional outburst from her. Later that day she enjoyed a boat ride, a buggy ride, she played games with the other kids, we roasted marshmallows and had a fun story time before bed. She even worked up to swimming in the lake by herself without clinging on to my neck the next day. I stayed close by, but we enjoyed swimming together. There was no more frustration or panic. Elyse smiled her genuine smiles and laughed her infectious giggles.
While I worked through Elyse’s frustration, fears and outbursts, can you imagine what made the whole process easier? Let me fill you in on a little secret: it was the people around us. I didn’t feel judged by my friends as a terrible mom because my child was screaming. I didn’t feel judged when I took her to the outhouse for the umpteenth time because when she tells me she has to go, I take her. I didn’t feel judged when I missed my turn to do dishes, or didn’t quite prepare all of that dinner when it was my turn to do so because I was parenting a child who sometimes takes longer to do things. Instead what I felt was their love and support. They showed not one ounce of disapproval for any of my daughter’s behaviours, no matter how disruptive or socially unacceptable, they simply accepted her for who she is. They helped me by picking up the slack, by including both girls in every single activity where they showed the slightest bit of interest and offered to watch one or the other repeatedly. It felt like we were three parents looking after our combined four children, and I can tell you, when you’re the single parent in that triad, that feels pretty darn good.
So why tell you this? That my kid screamed in my face and that other parents, my friends, were cool about it? I have to tell you this because there are parents who would still turn away, look to another and roll their eyes at my daughter’s behaviour. There are parents who might hesitate to invite a family over who has a child with a disability because they’re afraid of the type of socially unacceptable behaviours I’ve described. There are parents who wouldn’t know how to help, though they’d want to, and so they’d rather just avoid the whole situation all together. There are parents who would be shocked, maybe even offended, by my daughter’s behaviour. And all I want to say is, invite us anyway, invite the kid with the disability to do things anyway, take a chance, anyway. My friends’ kids saw their parents display unconditional love, and I can think of no better life lesson to imitate than that.
My friend and her husband put my daughter’s needs as a child and person first without me having to say a word. Her need for dignity and respect, kindness and patience. They respected her timeline, and made it clear she was invited in with open arms. They played with her, not afraid to make dragon sounds back. They asked me about her preferences, trying to ease transitions. Basically, they acted like the incredibly decent human beings that they are, extending the same level of hospitality to Elyse that they do to every guest, but understanding that the same does not always mean equal. That at times, Elyse needed a bit more attention than the other children did; though they all took their turns, and everyone got what they needed.
I am incredibly grateful to my friend and her husband for the amazing weekend, and for allowing both of my daughters the chance to grow in a space free of judgement, where they could truly be themselves. What the world needs more of is people who aren’t afraid to see into the fear and pain of another and reassure them it’s okay to be who they are. And mean it.