All Haste to the Wedding

The bags are packed, the plans have been made and the caregiver has been hired.

We are breaking our own rules, for better or for worse.

We are taking D to a Big Fat Indian-Muslim Family Wedding.

If I could get out of it on his behalf, I would. As we draw closer and closer to departure (tomorrow for me and the younger kiddos, and Friday for his dad, grandparents and D to join us), I keep thinking – why are we doing this? Why are we subjecting D to this?

Six summers ago, after attending our third family wedding with D in the span of a year and trying various things to help D manage these weddings (for one, we took a caregiver/home therapist with us for the whole trip, for the second we decided to manage it on our own without extra help and for the third, we hired a caregiver from an agency in the city where the wedding was to attend all the functions with us), we made a decision:

No more.

Our family weddings (melding South Asian and Muslim traditions) are long (lasting several days), loud, exuberant, colorful, full of people and run late into the nights. Things start late and end late. They are full of people, relatives, family, friends, laughter, traditions, jokes, ceremonies and sometimes song and dance.

They are everything that is hard, challenging, frustrating and difficult for D and his autism.

And, as time has passed and we’ve figured out more and more when we feel it’s important to push D outside of his comfort zone and when it’s better for him and us as a family to not push him, we ruled our family weddings out.

Not worth the travel, time, money, headache and heartache.

And yet here we are, on the cusp of traveling to my cousin’s wedding, all of us. My mom-in-law ordered a special kurta for him from India (fancy, but made of soft material to hopefully not aggravate him), and I bought him his first dress pants in years. The bags are packed, the plans have been made and nearly every scenario I can think of, I’ve planned for.

There are a few reasons why we’re reversing what we thought was an iron-clad decision to NOT take D to any more family weddings. One is that no decision is ironclad. D’s progress is fluid and ever-changing, and what was intolerable for him months or years ago may not be intolerable for him now (unfortunately, I don’t think that’s the case here). Second, both my cousin and her fiancé as well as my cousin’s parents have asked us numerous times to please bring D, asking what they can do to make things easier for them.

Third, straight after this wedding we are headed to the beach, one of the only places we can go as an entire family where D (and all of us) has the best shot of relaxing and having fun. We’re not coming back home first. So he has to come with us to this wedding first.

And yet the closer we get, the more my stomach sinks. The past few weeks, maybe since Ramadan, has been hard for D. He is not feeling well, and something is really off. He is engaging in behaviors that have me really worried. And, as we work to try and understand where those behaviors are coming from – is he unwell, is there something medically wrong, is there something in his environment stressing him – I just don’t know how this is all going to play out.

One of the hardest things, I think, of living this autism life, is the immense amount of responsibility we take in guiding and making decisions for and with our children. It’s the same for parenting in general, but it’s amplified in special needs parenting. The cost of things going wrong is too high – for D and for us as his most immediate loved ones.

What is good for him? What is good for all of us? What is the best way to manage things? What is for his benefit, and what is for our benefit? When we try and include him in the best way possible because we want him to learn how to live with and be with the family — is it for his sake? Our sake? All of our sake? And if we shelter him or honor his nonverbal requests to be left alone or left at home, is that what he really wants?

How do we make sure we are doing right by D? And in doing so, how do we make sure we are doing right by his siblings, A and H, who are also looking forward to this wedding? How do we make sure we all come through this not just as survivors, but as a family who enjoyed?

The family is rallying around is fast and furious, and it alternately uplifts me and breaks my heart. To be surrounded in love and support is to know that everyone really wants this to work for D and for all of us. My mom, brothers and in-laws have done their best to reassure me, to let us know that they are here for us to help and support in whatever way D needs.

My cousin, the bride, texted me this message yesterday:

We all love D, and all of the fam will be there to give support in any way that we can. Also, if it helps, we can go to the hall [where the wedding will be] on thurs (sic) and check it out to see the layout. There are some smaller quieter rooms where guest won’t be, and D can hang out in case the main banquet hall is too overwhelming. We rented the entire building on fri and sat (sic), so we have access to the whole place and all the rooms.

So he can be wherever he is most comfortable iA (Insha’Allah).

My mother and mother-in-law said to me – let the worries go. We are all here for D and you. Let it go and let yourself have fun.

Let go. Let go. Let go. In a life where we try hardest to hold fast and do everything possible to facilitate the healthiest, peaceful, happiest and faith-ful lives for our children, letting go is the hardest lesson of all.