As the kids grow, especially with A entering in her tween-coming-into-teen-middle-school-years, our stories, struggles, challenges and joyful moments take on a different flavor. And what I’m able to share with you about those stories changes as well. Because even though A is as eager as ever to see herself in my writing and know that this story isn’t just her brother’s story (which it isn’t), I know there are things that she’d rather not have the whole world know.
I’ve been thinking about non-negotiables. What are the non-negotiables in our lives, and how are these changing as we grow further and further in our relationships with each other? The things that mattered in the past to A don’t matter so much now, and new things have thrust themselves into her life – providing a challenging to how I parent her, how I parent D and H, and how D’s autism plays into all this.
Because that non-negotiable fact still remains: D is autistic. It is part and parcel of who he is, and our lives are shaped and remolded, adjusted and readjusted for what works and doesn’t work for him. Every member of this family has taken stake in this life because, well, it’s our life. But we are human, prone to lashing out when patience and love and acceptance would be the better path.
A’s been struggling with this of late, and I’ve been struggling to walk that line of love and nurturing and realization of her frustrations (and her age and what she can and cannot accept right now) with teaching her to understand that what is – is. I can no more make D un-autistic than I can make her not be who she is.
These are our non-negotiables.
But I can make adjustments for her. I can provide her with space, with understanding, with the time to mature, learn and grow, with respect for her feelings and the intelligence to tell myself to walk away before I say something I’ll regret.
And I – we all – can try and respect the non-negotiables that matter to all members of our family, even though it makes things more challenging at times for D. Because the kids need to see that D has to bend sometimes as well, just like they have to, to make things work.
So when their Baba comes home from work, the non-negotiable (for the most part) is to try and provide some quiet in the house. D loves to spin his beads, and he is very loud when he does that. Even without the spinning there is a semi-constant loudness he emits.
A needs some semblance of quiet to do her homework. So we’ve turned the dining room into a study (and recently added locks so that her stuff doesn’t get messed up) for her. And we try to facilitate quiet from D for half an hour when his Baba comes home.
Another non-negotiable: We must eat dinner together as a family. My daughter recently complained to me that we hardly eat out, blaming D and his autism for our lack of restaurant time. And while there is some truth to what she says (eating out is difficult with D, due to his dietary restrictions and well, inability to sit for a lengthy meal at a restaurant), the larger truth is that it is our decision as parents to have family meals at home, especially on week nights.
Home cooking and family meals is a tradition passed on to my husband and I from both our families. We have continued it with our kids. Having my in-laws living with me only makes this practice even more of a non-negotiable. We’ve tried to integrate D into this family meal for years. It hardly works. (Which means the rare times that the stars align and he joins us for dinner makes it all that more sweet.) And so I explained to her – not eating out has little to do D’s autism. It’s more about how her Baba and I feel it’s important for us to cook good food at home and eat together, especially on week nights. And if she doesn’t like it, well tough.When it comes to religious practices, I have some non-negotiables in place. Whomever is home at Maghreb time must pray together – that usually means A, H and me — and their Baba if he makes it home in time. In Ramadan, especially during summer Ramadans, we must sit together for iftaar, the fast-breaking meals (doesn’t matter who is fasting – everyone must come together for iftaar). I used to try and make D join us, just sit with us briefly at that time. But the stress wasn’t worth it.
I was reading the popular blog, “Autism Daddy,” written by a dad whose son, “Kyle” has autism, about autism and holiday traditions and adjustments they’ve made along the way. It came at the perfect time, when I’ve been reading several updates from friends about the goods and bads of the holiday season for their autistic children and families – about letting go of so many things while holding onto other traditions. About the give and take, the non-negotiables, and the frustration when even those non-negotiables must be loosened:
5) Making Kyle open presents. That tradition died a long time ago. We gave it up. He’s got no interest. So when someone hands us a gift for him we’ll open it for him and try to make a big fuss, but we pretty much leave Kyle out of it.
And Christmas morning there’s not a big gift opening at our house. Since he doesn’t get Santa he gets lots of gifts along the way from us and others but there’s not a big Xmas morning gift opening. …
And it’s still not easy by any means… Going to wifey’s sister’s house on Christmas Day can be a true high wire act. And throughout all these holiday festivities there are still painful reminders of how different our lives are… And how removed from the festivities Kyle can be sometimes… Last year he fell asleep on his aunts couch on Xmas day at 8pm and that’s when the real fun started…his cousins started playing video games & board games, etc. And our Kyle wasn’t in the mix.
So wifey & I have to learn to separate what’s hard for us VS what’s hard for Kyle. 11 years in and it’s still not always easy.
It reminded me of another non-negotiable of mine – attending Eid prayers as a family. It’s a challenge for D, to be sure. But every year we go. We ALL go. Sometimes D and I only make it to the lobby area of the convention center where prayers are held while the rest of the family heads inside to pray. But at least we go and come back as a family.
Last Eid-ul-Adha, the mosque we attend ended up celebrating Eid a day after the rest of the community. And so they hosted Eid prayers in a small space, where I just could not accommodate D. So that non-negotiable of mine went out of the window. D and I stayed home.
And that hurt me to my very core. It was one thing – one thing – that I try and maintain year after year, the one religious thing we try and do as an entire family with our community, and it wasn’t possible. What can you do? Not a damn thing.
These non-negotiables — it took us a long time to put them in place, and it’s still a work in progress as our children mature, personalities transform, responsibilities wax and wane and the nature of D’s autism changes. Sometimes I think I’m making things unnecessarily difficult for all of us by having these non-negotiables in place.
But then I think of A and H and D, how they need to be able to count on certain things happening to the best of our abilities. And that everyone must bend in small and large ways to accommodate each other and our non-negotiables.
This is our autism family. This is our family. Full stop.