In Autism Land, Where Does Our Family Happiness Lie?

This is Day 10 of the Ali Family #AutismTruths – April 10, 2017.

Dear Family:

What does family togetherness mean to you? What does “having fun” as a family mean? Is it all of us together embarking on some new adventure, or some tried-and-true old favorite thing to do? Is it some of us doing things that are enjoyable while others stay home where they have a better shot of feeling more relaxed, less anxious and thereby happier?

I’ve struggled with family outings for so long. We all have. Trying to make sure everyone’s wants and needs, wishes and desires are met. Understanding that not all of us can do the same things together. This is different than a father planning a special trip with his son while mom and daughter stay back.

Different than two siblings going to a birthday party while the third skips out because it’s “not his thing.”

This is one member of the family staying behind or not engaging in a family activity because it’s simply too difficult for him – too anxiety-inducing, too painful, too sensory-overbearing and ultimately too difficult to conform one’s autistic personality to a set social constructs.

I’ve written about this before in several iterations – on “fractured family syndrome” and “what constitutes a good day in autism land.” But the questions I ask of myself, of all of us, now are more about what constitutes our happiness? Does our happiness come in pursuing ease, peace and fun on individual bases? Does it come in the collective pursuit of happiness?

And if so – what does that collective happiness look like? If some of the family are engaged in an activity and enjoying themselves and the autistic member can physically be with everyone but doing his own thing – is that everyone having fun? Is that collective happiness?

Does it depend on if the autistic member of the family is merely tolerating being with his loved ones in whatever is happening? What about if an autism (or disability) family goes on vacation or even on a simple outing to the park, and one parent engages in enjoyable activities with some of the children while the other parent hangs back with the autistic child, because he cannot engage in the activity for whatever reason?

I would argue that I contemplate these things more, perhaps too much, then any of you. Perhaps that’s because of my role as the mother – wanting to make sure everyone is feeling good, feeling happy and engaged with each other.

I wonder when we try to do something as an entire family, and D is just not feeling it – how does that affect your mood (Baba), and your mood (H) and your mood (A) and, of course, your mood (D)? If I air my private frustrations and worries to you all, would that feed the “fractured family syndrome” more – as in be an implicit approval of our going our separate ways in different activities instead of taking risks and trying to do things together?

What about my own happiness in all of this? It’s taken me this long – nearly 18 years of marriage and nearly 17 years of motherhood – to acknowledge that my happiness — my needs and wants, wishes and desires — matter as well. What do I want? What will constitute my happiness?

I’ve always said – if D has peace, I have peace. If D and A and H are happy – that makes my happiness.

But, I’ve come to learn that it’s more complicated than that. Because when we, like other autism families, understand that we simply cannot do all the things we want to do together – that our happiness sometimes lies in traveling separately, not being together, not doing the things that other families often do together – and we can be happy within this parameter, well that has been a difficult pill for me to swallow.

But then we have days like today – where we are together, where some of us are doing something and others of us are hanging back, but we are together. Where we spent nearly six hours out in a brand-new town at a brand-new place, taking a gamble on life. Where the weather was perfect and the crowds were nonexistent and the folks who were around us were friendly.

Where A and H got to do some fun stuff and D chilled and soaked up the sun and attention of his Baba – and that made him so happy. Where I realized that D not going horse riding or ziplining didn’t matter because time spent relaxing with each other was simply enough.

And, we were happy.

I guess these are things you guys have known along. Sometimes I’m the last to learn.

With love,

Mamma