It may seem pretty obvious that parenting a child with special needs requires more - more time, more patience...just more. And you'd be right. It does. Yet like many children whose needs may be hidden from view, so are the realities of parents when caring for their child's needs overtakes all else.
A parent recently shared with me that her marriage was ending. Weeks, months, and years of shifting focus from them as a couple to their child tore the fabric of their marriage beyond repair. The attention their child needed was unrelenting, and attempts to achieve any sense of pre-parenting normalcy (a word I immensely dislike) was intensified by extended family and friends not "getting it." Battling for their child became battling for themselves as well.
While I'd like to say this story is rare, it's not. Time and time again, parents have shared that they thought their partnership was strong until exceptional caregiving became the central role in their lives. Maybe there were some small cracks developing early on but they refused to believe that they couldn't withstand the strain.
When this new "world order" becomes the life's reality, even the strongest husband and wife can sometimes no longer cope.. It's a complex emotional landscape... denial, remorse, fear, guilt, uncertainty, feelings of helplessness, lost dreams, and even those thoughts that they dare never say. Why me and why us.
Life Through A New Lens
The entire work and family picture takes on new meaning when a child with autism, for example, becomes the focus...
Career changes. One parent may no longer be able to work. A client meeting and an urgent call from school collide.
Financial pressures. Paying for mounting expenses - often hundreds or thousands of dollars a month - when family income may be halved.
Family and siblings. Balancing the child's continuous needs while tending to other children in the family.
"Alone time." Securing a babysitter or caregiver (including loving grandparents) who understand autism is difficult at best.
Day trips need considerable preparation.
Vacations create tension and more.
Communication and intimacy becomes rare.
Priorities shift. Plans ended. The partnership crumbles.
It's no surprise that holding everything together becomes a herculean task. One that not every parent can manage.
Every parent parents differently. And when a child with special needs becomes the cog in the family wheel, parents become warriors, often waging the battle at different levels and in different ways. Yet when you're fighting an uphill battle, the toll is often too much for any warrior to withstand. Losing themselves in the process is commonplace. Not by design, but by situation.
When a marriage ends, the reality is that each parent still must play a pivotal role - or combination of roles - to help their child. Case manager, home therapist, scheduler, advocate, first responder. The assignment of roles may change, but the importance of each parent to the whole does not.
Your efforts and sacrifices, both individually and as parents, matter. You remain Mom and Dad, needing to work together to help your child. The strain on a marriage and the emotional fallout for each parent is very real. And painful. Yet don't lose sight of all you have done and are continuing to do to help your child move ahead. For while your struggles like those of your child may be hidden, your rewards most certainly are not.