Laura E. Marshak Ph.D ● Indiana University of Pennsylvania ● marshak@iup

1. Protecting and strengthening marriages and couples’ relationships while raising children with Autism Spectrum Disorders Cigna Autism Awareness Series December 8, 2011 Laura E. Marshak Ph.D ●Indiana University of Pennsylvania ● marshak@iup.edu

2. Background for this talk Brief professional and personal background A few thousand surveys and many in-depth interviews 1500 surveys sent to autism support group 2 2

3. Two couples with children on the spectrum • “We had no choice but to throw our marriage overboard.” -Parents of 2 children, one with ASD • “My husband and I have a Friday night date night. Cooking is my passion, so I cook us a gourmet meal every Friday. Oftentimes, we each have a child on our lap, but we still sit together with lighted candles and a glass of wine.” - Mother of 5 children (married 25 years). One child has autism & one has Down syndrome.

4. Myth and reality • Research studies on the impact of autism on marriages “You can grow apart or closer depending on if you work together.” -Father married 56 years

5. Learning to make marriages better (even if you are already so busy): • Important to change your part of the “dance” • One new strategy at a time • Change is reciprocal • Less draining (to make a few changes) than living with ongoing problems

6. "Guilt is to motherhood as grapes are to wine.” -Fay Weldon …And then there is fear and grief

7. Making it Work “Finding a place for disability in the family, but keeping disability in its place.”(Gonzalez, Steinglass, and Reiss,1989)

8. 1.Keep autism in its place (avoid 100% immersion) “The first place I found support was through an Internet group. That was my lifeline and I used to be online till two, three, four in the morning. There was one mom whose kid was born a week apart from mine, and our diagnoses were happening at the same time…we shared this same experience so intimately at night. She was my “husband” and I was hers. I remember finishing a conversation with her and going in to talk to my husband who was working. I was mad that he was working because he had something else to do and I only had this.”

9. 2. Tend to your marital “garden” • Marriages and relationships can’t do well if they are not tended at all. • Couples are entitled to take a little time for a good relationship even if their child still struggles. • Law of diminishing returns 9

10. 20 minutes a day : 2% of your day 10 10

11. 3. Make sure there is connection that is not only about your children

12. 4. Become a team “Don’t take complete responsibility for the care of your child. Involve your husband in the different aspects of raising this child with a disability: doctor appointments, IEP meetings, goal setting, physical care, etc. Insist that your husband educate himself about the disability so he can make informed decisions as part of your child’s team. Share in the responsibility…burn out comes quickly.”

13. Making space (and giving up some control) Sometimes we have an inadvertent role in having a partner who doesn’t help much. We decide we can do it better and faster. Some people need to make room for their spouses to parent and give up some control. (John Gottman) If criticized too much, partner pulls further away. Sometimes the partner is fearful of “doing it wrong.” There are parents who listen at the door to make sure their partner in interacting appropriately, insert themselves interactions and end up getting the opposite of what they want.

14. What are fair and livable roles? Element of choice Equality of workload Equality of time demands Balance of power Opportunities for personal time/space No one assumes total responsibility

15. 5. Embrace differences • Emotions • Expectations • Child-rearing • Ideas about treatment

16. Accept some differences in child rearing. (Don’t turn your partner into an assistant.) “ I actually value his different child rearing habits. As much as children need consistency, I think they also need to experience two different ways of doing things… As an illustration, there was a picnic one time and the kids got into a condiment fight where they were squirting ketchup and mustard at one another. Well, the men (there were only guys there) stripped all the kids and hosed them down! What mothers would have done that?! I don’t think any. But the kids were fine and had a great time. Guys think of a different way of doing things.” 16

17. Accept differences in emotionalresponses to a child’s disability “I think men get a bad reputation for not accepting disabilities. We may respond differently, but every father I have spoken to knows his child has issues. We are just as hurt and traumatized by the knowledge when we learn about it but are expected to take strong roles and not react strongly. Part of this is to keep balance, I think. I have always accepted my son’s diagnosis; I recognize he has problems, but in my eyes he is not disabled. He is, I think, ‘differently-abled’ and needs help relating that to the real world.” 17

18. 6. Save a corner of life for yourself “We give up our interests and take on a new identity only to feel sorry for ourselves later and blame our spouses.” -Mother of a child with Autism

19. 7. Learn to manage emotions (sadness, anger, anxiety, guilt) • We can’t look to our partners to make us feel better about aspects of raising children on the spectrum.

20. Watch Out For “What-ifs”(difference between worry and planning) What if he doesn’t get better? What if she ends up …. What if…. Our body responds to these thoughts as if they were actually happening.* But how will I ever… Someday it could… What if she doesn’t… 20

21. Avoid Getting Overwhelmed: How do you eat an elephant? “Sometimes things get overwhelming. Sometimes I cry simply because there is too much to do or remember. But I find myself to be a better parent if I do not get caught up in how much there is to do but rather look at how much I have accomplished today.” 21

22. 8. Protect romance and sexual intimacy “What romance? I have to sleep with my child as she is afraid at night and will look for me if she awakens and I’m not there.” “Typical times to make love are just not available to us due to our children’s sleeping problems. However, we developed the attitude to take opportunities when they present themselves, like when the kids are out. It may not be ideal, but it can be romantic if you let it be, kind of like being teenagers again.” 22

23. 9. Practice realistic expectations and realistic forgiveness. “I have a special needs child; I can’t have a special needs husband.” One mother said to me… 23

24. “With forgiveness we can love imperfect people and allow them to love imperfect us.” ~ Fredric Luskin 24

25. “The advice I give to couples who sail into a storm and are fighting is: Don’t hack at your boat in a storm. If you are in the middle of a crisis, don’t take the very support you have and start whacking at it, because that is dumb. You should love, nurture, and care for that other person or you are not going to make it through the storm.” -Parent of three children with fragile X syndrome 10. Don’t hack at your boat in a storm. 25

26. Contact and book Information • Marshak@iup.edu • www.marriedwithspecialchildren.com • Married with special needs children [A couple’s guide to keeping connected] is available through Amazon and Woodbine House. It was written by Laura Marshak and Fran Prezant.