The "Untold Parenthood" Series: Amanda DeLuca
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 that somewhere along the way my husband and I forgot how to effectively do that 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 that’s true, but what I can say is that it’s brought you challenges we never planned on facing when we said “I do”.
When you’re young, engaged, and so in love that you’re naive to what’s to come, you never think about marriage being work. The added level of stress of parenting children with different abilities. 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 that 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, that we’ve forgotten how to slow down for each other. We wait too long to talk, and then we forget how to fight fair. Our world has become so overwhelming that we forget it’s ok 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 that while we pour so much of ourselves into our children that our marriage needs attention and work too.
Somewhere along the way we became angry, we put walls up, we forgot that 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 that 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 make me understand the why. I don’t have advice to give, as I am no expert, but what I know is that 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 that you appreciate them, and never stop fighting for each other.
Written by: Amanda DeLuca of "Jackson's Journey, Jackson's Voice"
Amanda lives in Ohio with her husband, is a mom of 2 to Monroe, and Jackson. Her son is on the autism spectrum and is what inspired her to begin her journey through advocacy in the IEP process. Amanda is a certified Master IEP coach and proudly serves family both locally and remotely to empower them to come to the IEP table with confidence while working collaboratively with their team. You can learn more about her IEP consulting business on her page: Advocate.Out.Loud- Amanda DeLuca. In her free time she enjoys teaching at her dance studio, and writing for her page Jackson’s Journey, Jackson’s Voice.