The Vows of Special Needs Parents

The Vows of Special Needs Parents

When a family has a child with tremendous needs, what we do for her can sometimes overshadow everything else, including our relationship with our significant other. Paying attention to being a couple is important not only for the emotional support and companionship, but also because a strong family has a strong couple unit at its head. And that’s important for everyone.

In May of this year, my partner, Steve, and I will have been together for 11 years. We used to enjoy going out to movies, dinner, the opera (Oh YES! Steve loves me that much!) and to the occasional football game (Oh YES! I love him that much!). We enjoyed our ‘Date Nights’, our intimate times alone and that we could always take the time to sit and talk when we needed to. Then we had Jaimie and many of those things ended shortly after she was born.

Jaimie was an extremely difficult baby. It took the two of us to do the simplest tasks for her because she fought everything so hard. To change a diaper, one of us had to hold her down while the other frantically cleaned her up. To give her a bath, one of us had to hold her in the tub (or baby tub or kitchen sink depending on which location gave her the least amount of stress) while the other washed her at lightening speed. To feed her, to clothe her, to comfort her, to get her to go to sleep, to try playing with her… you get the idea. Then after a few months, Jaimie refused to even let Steve do anything for her. It was very lonely for both Steve and I.

Imagine, for a moment, how heart wrenching it would be to have your child reject you when all you’ve done is love her! That was Steve’s side of things. For me, my entire day and night was spent caring for our child because there was something about Steve that triggered all of the sensory sensitivities that Jaimie hated. She couldn’t stand his touch, his voice, his smell…everthing. And that had a huge impact on our relationship.

Steve didn’t feel like he was part of our family anymore and, even worse, we didn’t feel like a couple anymore. We got into that mode where he got up, went to work, I cared for Jaimie all day, he came home and Jaimie screamed until we finally got her to sleep (for awhile) then we were both too exhausted to chat. We were both hurting so much but weren’t able to let it out. Then I decided we had to.

This happens to many parents of special needs children. We become so focused on meeting our child’s needs that we forget about our own — separately and together. That’s why, sadly, a lot of couples break up when they have a child with high needs. But my view, in any situation, has always been that it takes a lot more strength and courage to stick together and work it out together than just to give up. We needed each other and, most importantly, Jaimie needed us. So, one night, we took the time to sit and talk about our relationship and what we could do to make things better. We each promised to do the following things:

1. Remember that our child’s needs are greater than what one of us can provide for her on our own.

Invest in your relationship because together you can bring more resources to bear for the care of your child.

Related: Developing Your Own Network

2. Remember to invest in ourselves

We have to see ourselves, both individually and as a couple, as a limited resource and that without investing in oneself and one’s relationship, that resource will fail.

3. Remember to take time for intimacy

Even if all we have is 10 minutes each day alone, we need to take that time to cuddle together, chat about other things going on besides our exceptional child and remind ourselves of why we became a couple in the first place.

4. Remember to talk

Communication is vital in any relationship because when you stop talking, you don’t know what’s truly going on. Never stop talking.

Related: Daddy Loves You: A Reminder for Daddies of Children with Special Needs

5. Remember that it’s okay to be away from our child for a little while to take a ‘mental break’

Parents of special needs children, especially mothers, often feel tremendous guilt being away from our child. I still feel that Mama Guilt when I take a bit of time for myself. It isn’t because I don’t think Steve can’t care for the kids; it’s more because they need me so much, especially Jaimie. And one tiny thing that isn’t constant…that he may forget…and it can set Jaimie off for the day. Jaimie needs to see that I go out and come back. And I need to go out to regroup. Such time is important to everyone. The last thing we want to happen is for resentment to fester and grow.

Related: Where’s the RESPITE?

6. Remember to meet our needs first

We can’t possibly care for our high needs child when we aren’t in tip-top shape. It may sound selfish, but by self-investing you’ll be able to sustain yourself more continually to meet your child’s needs. Be as kind with each other as much as possible, recognize each other’s limitations and fill in each other’s gaps wherever possible. Take the steps to be healthy in every facet—emotionally, physically, psychologically, mentally and spiritually—to be ready to handle the bumps that come along.

7. Remember to reach out

Oftentimes, parents of special needs children forget to grab onto the help when it’s offered or even recognize that we need it. Address the challenges, deal with guilt and fear and seek the support of services, friends and/or family to share the tasks of care. The above list is what Steve and I call our ‘vows’ of being special needs parents. And we always check into it when we feel a little out of sync in our relationship. Eleven years together is a long time. Sure we get on each other’s nerves once in awhile, but I’ve received a huge reward for our hard work: a best friend, a lover, a confidant, a bodyguard, a back-up, a partner in life and the best damned father in the world. To me, there has been no better investment.

More Helpful Articles

• Date Night Ideas for Exhausted Parents
• Date Nights At-Home with the One You Love
• Respite: Take a Break to Recharge
• Running: My Temporary Escape

This post originally appeared on our January/February 2011 Magazine