‘Somewhere along the way we became angry. We put up walls, we stopped holding hands.’: Special needs parent urges ‘never stop fighting for each other’

“Lessons I’ve learned about marriage while raising a special needs child:

We’ve spent so much of our time and marriage teaching our son how to communicate, somewhere along the way my husband and I forgot how to effectively do so with each other. Days are long, sometimes-sleepless nights feel longer, and the added stress of balancing therapy appointments, bills, insurance calls, and so on makes it harder to remember you’re on the same team.

I’ll never say marriage is harder for those of us raising special needs children, because I have no proof this is true, but what I can say is it’s brought challenges we never planned on facing when we said, ‘I do.’ When you’re young, engaged, and so in love you’re naive to what’s to come, you never think about marriage being work. Or the added level of stress from parenting children with different abilities. Or how hard it is to find time for one another.

We get into the habit of using first-and-then language, and then find ourselves using it across other areas of our life, like our marriage. This weekend, my husband and I learned we’d been doing it for far too long, and it isn’t an effective way to work as a team. We fought, we both felt like we had been pushing each other away, we were angry, and we had stopped listening to each other. We were both hurting, and we weren’t giving each other enough support.

We had been subconsciously placing unrealistic expectations on one another, our own to-do lists we expected the other to know about. We weren’t planning with each other, we were just planning on the other not doing what we thought they should know we wanted.

We’ve become so caught up in our son, we’ve forgotten how to slow down for each other. We wait too long to talk, and then we forget how to fight fairly. Our world has become so overwhelming, we forget it’s okay to tell each other exactly what we need instead of waiting for the other person to ask.

Our communication needs work, we need to remember while we pour so much of ourselves into our children, our marriage needs attention and work, too. Somewhere along the way we became angry, we put walls up, we forgot we were fighting for each other. We forgot to hold hands, to lean on one another, and we needed a reminder of being on the same team.

We advocate for our children, but we forgot to advocate for each other. We tell our children dozens of times a day how proud of them we are, we thank them for cleaning up, encourage them to keep going…are we doing this for our spouses? Do we thank them for letting us sneak an extra few minutes of sleep, for picking up dinner, for making the follow-up phone calls so we didn’t have to? Because I can admit I should be doing better.

Have you seen the divorce rates for special needs parents? It’s absolutely frightening, but the stress and the exhaustion makes me understand the why. I don’t have advice to give, as I am no expert, but what I know is special needs parenting changed our marriage. It changed our view and expectations on life and responsibility, but it will not be what breaks us, either.

We will learn from our mistakes, we will admit to our wrongs, and we will fight to do better instead of just fighting. Tomorrow is a new day, a blank slate, no more secret agendas. Just better communication, and I know we are always on the same team.

We are done placing blame, holding grudges, harboring anger. We have to get comfortable with being honest, telling each other what we need, when we need a break, when we want support. Giving praises and thanks to each other, even if it’s simply for making through another long day together.

We have to remember we are on the same team, to advocate for each other, to remember our marriage matters, even with special needs. So, although I don’t have much advice to give because I’m still learning, too, give your loved one a goodnight kiss, remind them you appreciate them, and never stop fighting for each other.”

This story was submitted to Love What Matters by Amanda Deluca of Jackson’s Journey, Jackson’s Voice. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos

Read more powerful perspectives from special needs parents:

‘Of course he doesn’t, he’s absolutely fine!’ Everyone laughed it off. My little boy wasn’t going to talk, EVER.’: Mom to son with autism urges ‘acceptance starts in the home’

‘I know it may not feel like it at first, but you were chosen to be a special needs parent for a reason.’: Mom to late son with Down syndrome urges ‘love them a little extra for me’

‘At least he doesn’t…’ As a special needs parent, I hear this all the time. Each one takes a little slice out of me I can’t fill back in.’: Special needs mom urges you to ‘validate’ those who ‘give you a glimpse of their challenges’

‘Please, sit with us. Text us. Stop by and insist on taking our kids for the day because I promise we won’t ask for help. But mama, we need it.’: Mom says all a special needs parent needs is for you to ‘show up’

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