Originally published in New York Metro Parents, July 28, 2014
All expectant parents share certain feelings—excitement, nervousness, and happy anticipation. When their son or daughter is born, a new feeling emerges: anxious calibration. How does my child compare to all the rest?
When a child is diagnosed with a disorder such as a learning disability, autism spectrum, speech delay, sensory delay, or is just clearly “different” or quirky, the parents’ world can be profoundly shaken. Every parent is on an emotional journey, but for parents of atypical kids there is no roadmap to warn of the pitfalls or point out the best scenery. It is unknown territory.
Until recently, the well-being of these parents has rarely been noticed, let alone addressed. All the attention is focused on the child. That’s understandable, but it is also a big mistake. Doctors, teachers, and therapists depend on parents to be the primary managers of their children’s treatment. If the parent is exhausted from the relentless day-in, day-out challenges, it has an impact on his or her ability to manage that treatment. If Mom is hopeless and depressed, it affects her child. If Dad is angry, distant, or frustrated, the rest of the family is affected. Although these feelings are normal, they have the potential to be destructive. Luckily, there is a way to manage them. It begins by recognizing the feelings—good, bad, and ugly—and learning about them.
What the Journey May Look Like
In my work with parents of atypical children, I have seen that parents go through certain predictable emotions as they become accustomed to their child’s condition. The emotional phases are fluid, with parents often moving in and out of the various feelings several times over the course of a month, a week, or sometimes even a day. These are not just psychological reactions; they are hard-wired into your neurophysiology in the same way that primary responses such as fight-or-flight are hard-wired. The emotions you can expect as a parent of an atypical child may include:
Denial or Emotional Numbing: Although you may have sensed in your gut that something is not quite right, a common response to hearing that your child has a diagnosis is to freeze emotionally while your mind processes the news. That paralysis often takes the form of emotional numbing, and you may go into “autopilot” mode or even deny that there is a problem: “There’s nothing wrong with our son! Boys will be boys!”
Anger or Aggression: As the numbing effects of denial begin to wear off, you are confronted with the reality of the situation. That can be painful, and the pain is often redirected and expressed as anger. Friends, family, teachers, and doctors all can become the target of a parent’s anger, as can the child. It’s especially crucial that you recognize when you are in an anger phase and find an appropriate outlet, as families with atypical children have a higher-than-average rate of divorce and domestic violence.
Bargaining with Fate or Seeking Solutions: A common response to feeling helpless about a child’s condition is an urgent need to gain control over the problem. This is a positive impulse. However, our brains are geared toward simplifying information so that it aligns with what we already believe or understand. Parents may decide, “The Internet says this condition is over-diagnosed! I’ll just put our son on a diet…change schools…convert to Buddhism…pray daily.” Some alternative approaches do work, but the challenge is to weigh reason-based solutions against the lure of magical thinking.
Depression, Isolation, or Shame: Unfortunately, these emotions are somewhat unavoidable when parenting an atypical child. But self-awareness can help you manage your darker moods. For your child’s sake as well as your own, you need to learn self-care strategies for overcoming your occasional bouts of sadness.
Acceptance: Coping with the reality that your child has special needs is a deeply personal experience. Although nobody can fully understand all the emotions you’re going through, getting the support you need will help you reach an inner equanimity and an acceptance of the unique and very real child whose parent you are.
The dignity and grace shown by a number of parents with whom I have worked is truly inspiring. One mother told me, “I can’t believe I’m saying this, because I never would have wished this condition on my daughter, but having a child with autism has enriched our lives. Our family has grown closer, our capacity for empathy has expanded, and our other children have an extra measure of compassion and social awareness.”
No one expects you to be a saint simply because you are the parent of a child with challenges. But my experience with families like yours has shown me time and again that the journey you are on will be full of unexpected feelings and events—sometimes difficult, and sometimessurprisingly joyous.