In addition to dealing with the individual struggles of parenting a special needs child, we must simultaneously face the following challenges with our partner if the marriage is to thrive:
- We need to connect with our spouse even though it sometimes seems that our child’s issues are all-encompassing.
- We have to try to accept that our partner may have different emotional reactions to the diagnosis of FXS. In our minds, our partner may not be “grieving right.” On the whole, men and women tend to handle their feelings quite differently and that may be challenging to understand.
- We may have to make adjustments to our marital and parental roles in a way that feels fair and doesn’t cause resentment. This may require occasional evaluation and re-adjustment.
- We have to do our best to retain some gestures of romance so that we can see one another as more than “mom and dad.”
- We need to develop a creative vision for the future, despite the challenges of the present moment. Often the thought of the future, which was once the subject of much dreaming together, becomes a scary subject to be avoided. With time, couples can begin to dream again about their shared vision for their futures, even if the future is next month.
- We need to be on the same team. As with any team, each partner has strengths and weaknesses. As a team member, you strive to complement each other and have a strategy for getting back on track when correction is needed.
So, in the midst of the extraordinary demands of parenting, therapies, and making a living, how can we realistically take the necessary steps to make our marriages stronger so that they can “go the distance” and be flexible enough to respond to new and changing demands? Here are some suggestions:
1. Plan Some Time Alone Together
First and foremost, couples need to carve out time together that is theirs alone. Of course, this is easier said than done because of the challenges of time, money, and finding babysitters, especially if there is no family around. This is the purpose of respite care. Use it to have sacred time for yourselves. Do something small like taking a walk or going to an early movie; it doesn’t have to involve great expense.
2. Express Appreciation Sincerely and Often
One thing that couples consistently tell me in therapy is that they often don’t feel appreciated by one another. Acknowledgment for the big things is very important, such as “I really appreciate how you work so hard to support our family.” Or “you do such a wonderful job with the kids.” Yet remember, the little things are important, too. Try stating something very specific like “I really appreciate that you helped me get the kids breakfast this morning.” Try for one acknowledgment each day and try not to follow up with “but ….”
3. Share Laughter and Find Humor in Everyday Things
Children with FXS can be charming and very funny. There is plenty to enjoy about that. Reclaim humor, irony, and laughter. It is a powerful weapon against despair and disconnection.
4. Praise Frequently, Criticize Rarely
Research shows this formula is a predictor of marital longevity. Try for a 3:1 ratio to start.
5. Respect Each Other’s Different Ways of Dealing With Your Child’s Disabilities
Through conversation, listen to your partner’s experience of your child and accept that it may be different from your own.
6. Accept Each Other’s Strengths and Limitations
On a team of any kind, there are individuals who excel at one skill and do not do as well at another. It is important to remember that we each have our own limitations that our partners must accept well.
7. Develop a United Front for Parenting
A difference in parenting styles is a primary source of conflict between partners. Do not undermine each other’s parenting. Take your discussions and disagreements away from the children. If you fear your partner is very inappropriate in their parenting, get help.
Relationships are a challenge and an opportunity for growth, under any circumstances. Good relationships require showing empathy and taking responsibility. Think about what it is like for your partner to be the parent of a child with FXS and what your partner might need from you. Share these ideas with your spouse. Then imagine your relationship as you would like it to be. Decide on the one thing you can do today to move you toward that vision and take that step to make your reality closer to that vision.