In this installment of Disability Scoop’s original series, Scoop Essentials, we chat about marriage and relationships with marriage and family therapist Diane Smith in Woodland Hills, Calif.

No matter the situation, caring for a person with a disability adds stress to even the most picture perfect of marriages. Diane discusses the unique rewards and challenges that parenting an individual with a disability brings to a relationship. She offers must-read advice about communication, dealing with a diagnosis, handling grief and frustration and learning to take care of yourself.

Disability Scoop: For couples, what changes when you have a child with a disability?

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Diane Smith: On a day-to-day level, there can be a lot of differences in the care-taking responsibilities for the child. A number of other things change too. One is that there is a process of grieving. You have this image of a child you expected to have but don’t have. The process of working through this grief is going to impact the couple. There are also financial burdens. Your idea of who’s going to work and who’s going to stay home may change. Also there can be a sense of isolation from family and friends. The feeling that other parents don’t understand what life is like. The struggle of finding babysitters for children with special needs. These are some of the extraordinary burdens parents face that are over and above what other parents face.

Disability Scoop: In the early days of learning about a diagnosis, what can couples say to each other or do to make things easier?

Diane Smith: The process of receiving that information (a diagnosis) and the grief it triggers is huge. Women may experience this differently than men. Couples need to allow themselves to listen to their partners. Couples can sometimes polarize in terms of their outlook on life. One partner may feel relief, and the other partner may feel devastated. When couples begin to talk and really listen, they can feel the full range of those experiences and emotions.

Disability Scoop: Parents who have a child with a disability often deal with more than their fair share of stress. How can couples stay positive over the long haul?

Diane Smith: One, and this is very hard to do, is to find time to be with each other as husband and wife away from the children if at all possible. You need time to talk uninterrupted, even if it’s just a walk around the block. Allow a place for humor to be a part of your lives again. Sometimes people stop having fun. Connecting with other couples and families with children with disabilities can help. Building a sense of community. Being able to appreciate and celebrate the positive things your child or children are able to do, however big or small.

Disability Scoop: You spoke before about parents experiencing a type of grief. Can you elaborate?

Diane Smith: The grief that parents experience is because of a significant loss. The loss is not of the child. It’s of the dreams we had for the child, who we imagined the child was going to be and who this child was going to be in our lives. We have to separate from this dream and reattach to the child we have. That’s what the grieving process is — learning to adapt and reshape our dreams and expectations for that child and for our own lives.

Certainly grieving isn’t over and done with right after diagnosis. Some of these feelings go on for years and years and can be re-stimulated for example, during a child’s birthday, or when their child enters the school system or anytime parents expect their child to achieve certain milestones.

Everybody has their own way of grieving and there isn’t a right way to do it. Sometimes partners find that they go through the grieving process differently. It’s really important that they respect each other’s grieving process. This comes with the caveat that we have to watch for warning signs of a person not coping well. Warning signs may be inappropriate anger, raging, excessive drinking or drug use, any type of compulsive activity like over-eating or under-eating or escaping onto the computer for hours and hours or any kind of behavior in the extreme. In that case, some help may need to be sought out.

Disability Scoop: How can you deal with this type of grief?

Diane Smith: Talk. Share what’s going on. Don’t isolate yourself. Really be aware of yourself and your partner. Pay attention to danger signs like drinking too much, eating too much, not sleeping, pulling away. Grief is a natural, spontaneous, unlearned healing process. The best way to deal with these issues is to talk about them in a comfortable, safe place.

Disability Scoop: What about guilt and shame? Are those common feelings as well?

Diane Smith: Mothers in particular experience such enormous guilt about the issues related to their child’s disability. Frequently mothers will search and search in their minds of what they did or didn’t do when they were pregnant or when their babies were little. Searching for those things and blaming oneself is kind of a way to make meaning out of something that really doesn’t make any sense.

There’s also the issue of shame. People will say, “I love my child,” but there’s a certain amount of their child’s imperfections that kind of reflect on themselves in a way that makes them feel ashamed of that imperfection. A lot of times that may have more to do with the parent’s history of shame and feeling different. But that’s a frequent thing that parents will feel, especially if the child has really difficult behaviors.

Disability Scoop: How can people come to terms with these feelings?

Diane Smith: It’s a normal thing to feel guilty, but when you hang onto guilt and it festers then it makes a person really not be able to function well. It’s really important for people to be able to talk about it. One of the things that makes people hang onto these feelings is the feeling that nobody else has ever felt that way. Sometimes just being able to say these feelings to someone who you feel safe with, and for it to be validated that you are not alone, is helpful. It takes the person out of that dark place and brings them into their own humanity that it’s okay to feel those types of things.

Disability Scoop: What are the keys to maintaining good relationships with those around you — whether your spouse, children, friends or otherwise — when you feel stressed or overwhelmed?

Diane Smith: Parents put everything into helping their child. It’s so easy for them to become depleted and the idea that they should be taking care of themselves feels selfish. But it can be challenging to maintain healthy relationships with other people when you’re not feeling quite whole yourself. It’s like a pitcher of water. If all the water does is go out and you never replenish that water, then it ends up dry with nothing more to give. Tend to your needs. For some people it may be spending time with their friends having coffee. For others it may be yoga, their career, writing, whatever fills a person up.

Oftentimes people feel very alienated from their family members because their family members don’t understand what’s going on. People they thought were really good friend aren’t such good friends. There are people that deplete us rather than replenish us. It’s important to tell people what we need from them. Nobody can read minds.

Disability Scoop: What about when one spouse or a couple is in a rut, or in a not so good place? How can they get out?

Diane Smith: Commonly people become consumed with feelings of guilt, anger or feeling overwhelmed. People need to reach out to friends, couples therapy, spiritual leaders. Reach out and take yourself out of isolation. Getting help, reading books that have stories about other parents going through the same struggle, these things help us shift perspective and may help us get out of being stuck. Focus on self-care, physical self-care and eating well. Exercise, relaxation, spiritual fulfillment. Find time to take care of yourself.

Disability Scoop: What can you suggest for parents who might be tempted to take out frustrations on their spouse or even their children?

Diane Smith: A lot of parents feel angry. They might feel like, why me? Or they may be angry at the system and how difficult it is to get services. They may find themselves lashing out at their partner, their children, even at strangers at the grocery store. If you notice this, you need to confront them in a very calm way and tell them to think about getting help because they’re misdirecting their feelings. Maybe they’re so depleted or stuck in grief. Support is very important. Whether a formal support group or informal connections.

Disability Scoop: What are some simple things couples can do to communicate better in the hope of avoiding conflict?

Diane Smith: Watch the nature of our communication. Talk about our own feelings rather than attacking. When we attack, the other person goes on defense. Be aware — we should be praising our partners more than criticizing them. Our partners and children need this from us. Expressing appreciation often, and specifically, is very helpful.

Disability Scoop: Does having a child with a disability bring any added benefits to a relationship?

Diane Smith: Many couples talk about how this has brought them closer together. Parents talk about having a sense of purpose and a sense of appreciation for even the smallest things in life and being grateful. Also, some people say they’re not rattled about things they used to be rattled by.

Disability Scoop: If you are a person with a disability, what can you do to make your caregiver’s life easier?

Diane Smith: It depends on the level of the disability. My own son with fragile X is 21. I try to communicate to him that his parents are people too who have needs, who react when they’re yelled at and who have feelings and need alone time.

Disability Scoop: What about adult children with disabilities still living with their parents? How can an adult child living at home affect your marriage?

Diane Smith: One of the important things is whether the parents are in agreement about what’s the best choice. What’s best for the child, for them, the family. Is it better for the child to begin to develop a sense of independence while the parents are still alive? You need to carve out lives for yourselves so your whole life isn’t consumed by caring for your child.

Disability Scoop: What about intimacy and your sex life? How can couples keep the romance alive with so many pressures on a daily basis?

Diane Smith: It’s very hard to separate out sexual intimacy from emotional intimacy. If we’re angry at our partner, we probably don’t want to be intimate or have sex with them. It’s hard for parents to shift out of being parents and caregivers to being partners and lovers.

Make plans to spend time alone; make time to make the relationship a priority. Find a reasonable time for children to go to bed, so that you can have time alone every night. Sometimes planning a day of the week to have sex, kind of like when you were dating. This is the night we’re going to put aside for ourselves. Go spend the night in a hotel. These things are very important. You need to put the fun back in your relationship, some lightness, because dealing with a child with a disability can be very overwhelming. When you have a special needs child it becomes more difficult to separate out all the worries, the therapy time, the money, fighting the school system, the legal things.

In terms of the relationship, think about what it might be like to be in your partner’s shoes, to be a mother or a father of a child with a disability. Think about what your partner might need from you. Write these things down and exchange these notes with your partner as a learning exercise. Another helpful exercise is to think about what your vision of the relationship is. Something like, “we really want to be able to get away every six months.” Then think about what action you can take or do to make that happen.

Diane Smith hosts an annual retreat for mothers of individuals with disabilities called “Healing the Mother’s Heart.”

Read all of Disability Scoop’s original series Scoop Essentials. Your Life. Your Issues. Your World.

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