Marriage And The Land Of Disability

The Land Of Disability

December 2, 2010 – I’ve had another thought on what makes Autism so special in my life.

I was online this morning in one of the support groups I attend and the moderator posed the question “Do special needs in our children cause distance and a lack of intimacy in our relationships and marriages, or are there other factors?”

Many parents posted back that yes indeed it does. And while I can understand these feelings, many is the night Paul and I have huddled into bed so exhausted there was no room for a “Screw you and your ugly ass shoes you phenomenal dillweed!” let alone an adoring “I love you, dear.”

It is exhausting and a lonely battle sometimes. And yet my husband and I may just have a lock here on something some do not.

It became apparent when I gave my shortish answer that it could become that way for us, this thing of roommates or business partners as opposed to love makers, but we had made a conscious choice for it not to. Sometimes the intimacy is in talking. We still talk about goals spiritual, educational, and things we’d like to do or see for ourselves.

We’d also had the actual conversation after diagnosis came down when we promised each other we weren’t going anywhere and that each of the other of us would come home every evening no matter what. I did not mention then but will mention now that we also promised each other we’d keep growing ourselves and have an independent place outside of our kids. In short, we understand that our marriage matters and it tops our list.

Well, crickets chirped in the silence in which my answer was received. There was much banter back and forth with people who sighed and said that yes their marriage had lost its luster.

They were exhausted and the partnerships were unequal. One focused on money making and one solely on the children. Anybody who mentioned that their marriage might have been made stronger, myself included, received curt reminders about how wonderful all of this was for us, but that in the real world, it didn’t work like that.

I found this interesting and was far from offended. I poked myself and looked out the window and reaffirmed that I appear to be in the real world myself. And Instead, I felt a wave of blessing. I was realizing how every word I’d spoken was true for me. Wow, I seem to be ahead of the curve here. For today anyway, and that is key, it is just for today.

Love is work. My husband does own a pair or two of spectacularly ugly shoes. I’m positive my closet hides at least one pair of Swedish wooden bone ugly clogs. But, love has been a choice we’ve made. I never had the experience of falling in love. I’ve fallen in puddles and potholes, though, and my experience with that has been that falling blows. I have worked and made a decision to love who I am with.

Fresh in my mind is the overnights my husband and I take away periodically and what a gift they are (and I do understand how incredibly gifted and lucky we are here. Not everybody has extended family who can or will step up to offer a chance to get away like that). But, more importantly, ringing in my ears are all of those conversations, the simple free gift of talk, that we have.

We talk, we plan, we dream, we take time to build each other up. It’s free and it can be done in small moments and built up like any other muscle if you both decide to.

And no the division here is not always fair on the surface of things. My husband is the money maker plain and simple. He is the laborer who keeps the slaw slinging. He is also the one who picks up my emotional pieces even when I’m ugly and have a temper tantrum and my butt looks big. But, If you said ABA, PEC’s, or IEP I’m not sure he’d know what that is. I take the lead on therapy and decision-making, period.

But, he comes home every night. The first thing he does is set his stuff down and rinse his lunch Tupperware. He releases the latch on his cell phone, he drapes his jacket over the chair, he washes his hands, and then he walks over to me and gives me a kiss.

Even though our kids might be, and usually are, standing there clamoring for attention I get that kiss first. And then he bends to hug his kids. He is the source of outright love for those kids. So, even though his focus is not on therapy or diet or any of that he is delighted by them.

He physically helps me get stuff done and he follows my lead on appropriate treatment. He is up to date enough to bounce ideas and questions off of and I do follow his opinion when they are sound. But, if I feel strongly about one thing he follows my lead and we give it a try. But, to our children, he is the guy who comes home every night, who loves their mother, who loves enjoys and plays with them.

Though, our neurotypical teenaged daughter, it is different in that he is a strong voice in her corner who pushes her toward education and loving and living in a way she can be proud of. But, still the weight of the actual work of it falls often to me, to get her going where she needs to be. I am the driver, the homework helper, the college application dropper offer. I am the ballet manager, the don’t do that, and the pizza slinger.

Is that balance fair? To me it is.

Is it exhausting and frightening having to be up to date and understanding on the benefits and risks of DHA and EPA in massive quantities, the evils or benefits of gluten, figuring out which communication device to go with if speech never comes in, dealing with a myriad of specialists in my home and out?

Knowing about IVG and cholesterol levels, and pulling functions out in every form every day no matter how hard on top of serving up all the love to my perfectly normal, perfectly busy daughter and meeting her needs?

Yes, it is. But, I am not alone. And without him and the often unseen weight he carries I could not do it in the way that I am or with the same singular devoted focus at all. Period.

I give credit to the blessings of God’s timing for us. We were 15 years in when our son was born–17 by the time diagnosis came down. We’d survived a lot of dusty loud messes of our own making. We’d been in and out, rich and poor, up and down, literally thick and thin. So we weren’t strangers to challenges when our son’s diagnosis came out. But, it brought about a new kind of feeling for us. One we’d never had before. A realization that this was not something within ourselves that we had the power to fix or control. There was an unnameable feeling to this unlike any other we’d ever experienced.

And something in this roommate instead of lovers conversation brought out what that new feeling is. That new feeling is the letting go of certain selfishness and learning how to grab hold of a new kind. All our lives we’d only worried about ourselves and how we felt. Yes, we had our beautiful daughter and we love her immensely, and you should meet her she’s a great kid, and we’ve some credit for that, but overall we were pretty selfish. It’s easy to love and appreciate the things like our daughter that turn out just right.

With the birth and diagnosis of our son, we got to see all that selfishness. Selfish hides in so many forms. Selfish can hide in expectation. One of the hardest things facing me after his diagnosis was all of that hidden expectation I had. And when you have a child with a disability you get caught out in having dreamed the impossible.

You dreamed of a perfectly normal and healthy child who will somehow be a credit to you. It’s what you hoped for, it’s what you planned for, and when it doesn’t come out that way you are left seeing all that expectation you had.

I don’t know anyone who prays in pregnancy “Please give me a perfectly disabled child so that I can give and be selfless and practice loving God’s way”. Maybe there are some but I wasn’t one. And when your Down Syndrome or CP or Spina Bifida child is born you are caught at these ways in which you dreamed for perfect.

Not only that, the world knows you dreamed it and that it exploded at your feet in a pretty puff of e’ffed up dream dust. It’s a personal and yet excruciatingly public deconstruction of selfish dreams and expectations.

And Autism? It adds the special little tiny twist of a child who can look right through you. Care less about you or societal norms sometimes and yet be entirely dependent on you. You have to look right through them to keep on pushing for them and if you’re looking for a cookie you are SSOLS. ~Simply shit out of luck son~

Selfishness in the form of expectation and the need for the usual forms of reward must die. And that is what is different about having a child with a disability. Your reward is slower and more fragile and if you are not careful you miss the many tiny victories you’ve seen happen for the hurdles you see ahead in the distance.

There is an added dollop in the case of Autism in that aloofness of spirit. But, overall in disability and the giving over of things it is pretty universal.

New selfishness must develop if YOU are to survive. That is the selfishness needed to return to your dreams and plans for yourself. The need to redefine and plot a course to yourself and your goals so that you keep going on in spite of your children. These things must be concretely pursued even against the likelihood that some of them will ever develop. Ireland, I want to see it.

My husband wants a Bachelor’s degree. I’d like to write a book. We both want to grow spiritually too. We’ve gotta keep dreaming those dreams while loving our perfectly imperfect child as well as our perfectly typical one. And through all of that, there is the commitment to our marriage and the keeping of promises we’ve made.

We do not know what the future holds for our Autistic son. We know that the odds of him living an independent life completely outside of us are not slanted in his favor. As beloved as he is and as hopeful and full of belief as we are, we do know that. We choose to believe whatever his path he is touched with exceptional qualities that will see him through.

We are full of hope, belief, and love for him. But, the obstacles and challenges ahead of him are mighty. The work it will take to get him wherever he goes will be lifelong. It is with a bittersweet recognition that we have come to accept this, though, we will push for him and believe in him until the day we die.

But, we do have it within us the power gives him a stable home where love is modeled. The active working form of love is seen here almost every day. This is good for our children but even better for us. We’ve avoided aloneness by continuing to share those dreams out loud. And by actively seeking and finding time away together in spite of the workload at home.

We have remembered that we are friends and are in this together, even when the balance is unfair, the goal is shared. The goal is what matters not who gives or takes the most. That we both work even in the unseen ways toward the goal is what will eventually take us there.

I choose to love my husband as a friend and partner. It is a choice we both make every day. Nothing in this life is free, not even love. Plain and simple. Special needs and disabilities destroy marriages to the tune of something like 80%. The pressures are not small. The odds are against us to a staggering degree. It is at times outright hard. It is painful sometimes. It is often draining. And it has never been fair!

And yet here we are my husband and me. The two very selfish people. We are sober strong healthy and sticking it out. We love our kids and see the perfection of God’s timings, blessings, and gifts. We are cheerleaders and weight bearers for our children. We are also careful enough to be that for each other. We are feeling the death of old selfishness and embracing the birth of a new kind.

In this way, we will survive. We will laugh, love, dream, plan, and go on and on. For today we are doing that and we are wise enough to keep an eye out for tomorrow. May it stay so for us. Even amidst the crickets and the silence, I hear the song of a truth that is working for me.