You, We, Us: Semantics Of A Special Needs Marriage

02/28/2017 09:13 am ET Updated Mar 02, 2017

Love and marriage can be complicated by kids. The oldest of our four children was born with a rare genetic condition which causes speech and motor impairments, as well as a host of sensory and behavioral challenges. As my husband and I have learned, when a special needs child enters the picture some days it feels as though an advanced degree in psychology, biology ― and linguistics –is necessary to survive.

“We’ve really got to do something about Erin’s behavior,” my husband said recently on the heels of another meltdown.

I agreed, of course, but knew that by “we” he meant: me.

This particular word play and pronoun slip is not unusual in the life of a married couple. Sometimes we laugh about which part of ‘we’ will be handling the task at hand. Depending on the subject matter and my level of sleep deprivation, however, the word can either roll off my back or simply just back fire.

We should really figure out what’s for dinner.” Fine, no problem, I’ll get on that. Or often he will.

We have to get the garage light fixed.” Generally his department.

We had a baby.” Ok, only one of us walked away with stitches, but fine, we can say “we.”

When it comes to our daughter, however, the use of ‘we’ and my reaction to it is more complicated. While Erin, 15, is our daughter she is largely my responsibility – and generally speaking I wouldn’t have it any other way. Bill is an exceptionally devoted and present dad to each of our kids, but given his jammed travel schedule and the fact that Erin is a teenage girl, it makes sense that I tend to her personal care, coordinate her schedule, connect with doctors and therapists and dispense medication.

As with the intricacies of any relationship, this arrangement works fine, until it doesn’t.

Like many with her diagnosis, Erin takes a delicate balance of medicine to regulate emotions, to improve focus and sleep and to prevent seizures. Inevitably there are times when the balance gets thrown off. Changes in weather, routine or body can render the meds less effective. Sometimes I can pin point what it is – some days it feels like it’s anyone’s guess. This uncertainty has a ripple effect on our marriage and family. Tensions rise. I go on the defense. And more often than not unsolicited insights or insinuations that something “we” are or are not doing are not well received.

Erin recently experienced a spell of difficult behaviors: obstinate, irritable, dramatic emotional swings made for a roller coaster month. I initially attributed the meltdowns to a cold and a round of antibiotics. About a week into this downward spiral, I realized she had missed several doses of a hormone supplement. I felt awful and incredibly guilty. The only thing I felt more strongly about, however, was not sharing this lapse with Bill ― at least right off the bat. I already felt like I was falling down on the job, I didn’t want anyone seconding that.

After reason reentered the picture, I realized this feeling was largely self-imposed and really not a fair assessment. As much as I wanted to fly off the handle when he seemed to suggest that ‘we’ were somehow failing, I recognized that ‘we’ is as delicate a balance as Erin’s meds.

I think this understanding and the language we use to address an ever fluctuating scale of shared responsibility is what holds so many relationships together – and at the same time causes them to fray. I knew what was expected, but initially did not understand what had gone wrong. And instead of ‘we’ need to fix this now – whether he meant me or the two of us ― I wanted him first to share in my confusion. I wanted him to say’ damn – you, and we, are dealing with a lot – and this is hard.’

I understand and appreciate that this is not a natural response for him. Bill loves and cares about Erin as much as I do, we just wear our concern differently. His inclination is to act immediately ― to mend what needs repair.

While he wants to fix and move beyond a problem as quickly as possible, when it comes to the more personal and weighted challenge of a special needs child – really any of our children – I need to consider all angles before I can process and devise a solution. Sometimes when a solution feels so far off, you just want to know you’re not alone in your confusion or in yet another doctor’s office.

As much as I take heart in his optimism and certainty that things can change for the better – there are moments I want him to acknowledge that sometimes things can’t be straightened out – at least right away. That sometimes behaviors, a diagnosis,and life just stink and we have to put up with it and figure out how to wade through. Sometimes, many times, there are no definitive answers as to why things have gone awry: like a missed dose. When it comes to kids, special needs or not, most of the time it’s not so black and white – it’s largely gray ― and together we have to learn how to live, to love and to speak about that before ‘we’ can move on together.

We’re working on it – the two of us.

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