A Couples’ Challenge: Special Needs Children, Young and Adult

SPECIAL NEEDS: The term is used here to include children of any age with medical, emotional and/or cognitive challenges. This will be the first of several posts on this subject

A PERSONAL AND PROFESSIONAL PERSPECTIVE: As a parent of a special needs young adult, and a couples therapist, I see firsthand the impact that raising, launching and helping to maintain these children, at all life stages, has on the couples’ relationship. What I have learned is clear. Protecting the Coupledom, the couples’ connection to each other, is as important as protecting the child. Neglecting the couple is as harmful as neglecting that child or their siblings.

MAGICAL THINKING: Couples wishfully assume that their relationship, what I call the Coupledom (that is the emotional domicile of the relationship) will stay static and strong until all other problems are resolved, the child matures, or the silver bullet is located. This is magical thinking, a defense we all use when faced with daunting challenges. But nothing is static, nothing stays strong without repeated strengthening, no one waits to be loved or cared for indefinitely. Young children may say openly, “what about me?”. But adults don’t. Relationships don’t talk, and parents feel selfish if they ask for something for themselves when their children are suffering or in need.

SHARED JOURNEY: From the moment it becomes clear that your child is “different”, each parent processes this information in their personal style. Someone may rush to the computer, the experts or the medical dictionaries. Another may rush to the phone, to a friend, or to their bedroom for a cry. Both partners will be scared, sad, perhaps beginning a grieving process for the child they had hoped for or once had, or embark on  a painful and often futile search for reasons “why?” These are painful times. Sharing this journey requires some additional work on the couples relationship.

UNDERSTANDING YOUR PARTNER:  Amidst the turmoil of these early days, it is critical that couples set aside time to share what they feel, and strive to understand how their partner is emotionally handling the situation. Your partner may not express feelings or attempt solutions or search for resources as you do. This “difference”,  if  not talked about and understood, can lead to misunderstandings, and friction. Building bridges of understanding rather than finding these differences alienating, will provide a foundation of trust needed for this shared journey.

IF YOU GET STUCK HERE: Building these bridges of understanding is no easy task, particularly when each partner is made more vulnerable by the news of their child’s challenges. This is often the very time when defenses are heightened and communication more difficult.  If you get stuck here or at any point,  a couples therapist, someone who is familiar with the special needs terrain, can step in and provide invaluable assistance. Don’t hesitate.

MOVING TO THE HOW:  Having achieved a language of understanding, which will need frequent tune ups, the couple can now join together in the search for methods, techniques, experts, or friends to provide some guidance and direction. Division of labor is natural and necessary. One parent may lead the search for experts but will rely on their partner to process and brainstorm the collected data.  Another parent may be in the trenches more often with the child or adult child, soaking up the experiential data. Coming together to pool information and provide support for each other’s efforts is essential. It only  takes minutes to touch base, share data and encourage each other on.

THE MORE ABSENT PARENT: Inevitably one partner is away more than the other. That parent needs to ask their partner for updates, follow up on information gleamed from appointments, touch base frequently and be interested in all that transpired while away, whether for the day, or the week. The parent on the front lines needs to share that information, not let feelings of “abandonment” prevent them from  asking for help in care taking  and decision-making. Both parents need to make sure that they and their partner are involved.

BEWARE THE TRAP OF EXCLUSIVITY:  There is always the temptation of one parent to become the exclusive caretaker of the child/adult. This is dangerous but understandable. There is a great anxiety associated with the care of the child and one parent can grow to feel that only they can do the job required to protect that child. This is of critical importance: alternating “hands on” involvement whenever possible will prevent this harmful attitude from developing. Early introduction of competent caretakers and extended family members to your child/adult child’s care, is essential for several reasons:  first to allow the couple time alone or with their other children; second, to increase the flexibility of the special needs child by helping  them to form relationships of trust with others (this is especially critical in their relationship with the less present parent);  and third, to protect the “hands on” parent from overwhelming burdens, and often an exaggerated sense of their own importance in the survival or well-being of their child. When they see that their child can be cared for by others, this dosage of reality can be tremendously relieving.

PROTECTING THE COUPLEDOM:  From the outset, parents who brainstorm the means and methods of keeping their relationship viable as they navigate the special needs world, are going to have a healthier and more satisfying relationship. Agreeing to place importance on their time together, talk time, taking walks time, sharing thoughts time, making calls during the day to check in, emails and texts, all these details of caring, send out threads of connectedness that will sustain the Coupledom and create an incredible bond.

SHARING IN THE BOUNTY :  Children with challenges bring great rewards to their parents and families. They push families to stretch themselves, to embrace new worlds of difference.  Their successes, courage and new found mastery enrich the lives of their parents and the family who love them.  A couple who weathers the early storms of adjustment with active attention to their relationship, and sustained commitment to caring for their relationship as well as the joint task at hand, reaps a wonderful bounty, the shared joy of seeing their child and all their children living the life that best suits them.  The deep bond that grows out of this journey is its’ own reward.


8 Responses to “A Couples’ Challenge: Special Needs Children, Young and Adult”

  1. Mickey Harpaz

    Dear Jill:
    Excellent blog, and a profound understanding of the topic. As a father to a special need child, the blog’s information helped me understanding some issues I haven’t thought about. It makes sense!
    You face the challenge, you take care of the child, but you neglect the
    “coupledom”.
    Thank you for your input all those years.

    Reply
    • jilledelmanlcsw

      Dear Dr. Mickey,

      I am glad that you gained something from the post. Those of us who travel this road offer so much support and caring to our fellow travelers, as you have offered to me all these years. Thank You.

      Reply
  2. marie-eve

    Dear Jill,

    Great summary of the problems facing couples with Special Education children. What about special education couples?

    Reply
    • jilledelmanlcsw

      Dear Marie-Eve,

      As always, I value your feedback so much. Your question regarding Special Education Couples is one I will give some thought and time. If you have any ideas, I would be happy to post them.

      Reply
  3. Linda Francese

    Oh Jill,
    Everything you said is so right, so important. We do often forget what brought us together in the first place and it is important for the special needs child as well as the other children in the family. It is so difficult sometimes, but I have always considered this an investment in my marriage and my family.
    Special children do bring great rewards. As devastating as the diagnosis was so many years ago, the accomplishments are astounding and cease to amaze me. I believe my Greg can do anything and I will never give him boundaries. The sky is the limit. If he shoots for the moon and lands in the stars, so be it! As least he got there!
    Thanks for such a wonderful blog and outlet.

    Reply
    • jilledelmanlcsw

      Dear Linda,

      I love how you believe in Greg: “If he shoots for the moon and lands in the star……” Bravo to him and to his family, and to his wonderful brave mom. Believing in him carries the day!!!

      Reply
  4. lynnie tolk

    dearest jill
    one cannot express how comforting it is to have an expert put our confused emotions and feelings so easily into beautiful words and thoughts. chris and i have both reread this entry a few times now. thank you, my friend

    Reply

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