Recognizing Grief 

When we imagined having a child, none of us expected having one who struggles. It can take time to adjust our expectations to match reality. It might sound strange, but this process looks a lot like grief, which is also a process pf acceptance. Recognizing the stages can help you understand your own emotional experience so you can embrace the child you have. 

In her book Not What I Expected, Dr. Rita Eichenstein explains “acknowledging and dealing with your feelings – even the so called negative ones – is important not only so you feel better about yourself, but also so you can better guide and nurture your child.” 

The path to acceptance is not linear. It flows between phases, rising and receding in unpredictable ways. Adjusting to what is can be hard, but it’s also necessary and good. Here are the stages of acceptance and emotional states you might experience:


What it Is: Shock, disbelief and confusion are all initial reactions you may have.

Why it Happens: This is a defense mechanism that protects us from the intensity of our emotions.

What You May Think: “This must be a mistake.” “There’s nothing wrong with my child.” “We don’t need to see a professional.”


What it Is: Lashing out at others or a higher power, resenting your child, or blaming yourself.

Why it Happens: Anger is a way of deflecting our pain (or fear) so we don’t have to face it head-on.

What You May Think: “Why me / why us?” “The school just doesn’t get it.” “If only we had acted earlier.”

Closely related feelings include

Fear: “How will I manage this?” “Is this forever?”

Confusion: “I used to be so decisive, now I waffle over everything.”


What it Is: Having an intense desire to take charge of the situation; solution seeking.

Why it Happens: By searching for ways to make things better, we feel like we’re being proactive.

What You May Think: “I decided I would do everything I could to help my child.”

A closely related feeling is

Guilt: “Why did I wait so long before trying a different treatment?” or “I love her, but I feel guilty that I don’t see her as perfect the way she is.”


What it Is: Feeling sad, lonely or guilty about your child’s issues; looking inward.

Why it Happens: You begin to comprehend the full extent of your new reality.

What You May Think: “Other people have no idea how hard this is.” “We’re the only family I know that has to deal with this.”

Note: This grief state is not the same as clinical depression.*

Related feelings include a sense of:

Powerlessness: “I don’t have what it takes to make this situation better.”

Disappointment: “I wish he were the athlete I always imagined he would be.”

Rejection feelings can also happen: “I wish I never had this kid.” (It’s normal to think this way on occasion, but if rejection feelings persist, please consider consulting a professional.)


What it Is: Coming to terms with your child’s challenges emotionally; focusing on the options and growth that may be possible.

What You May Think: “My child can succeed in her / his own way.”

Acceptance might sound like giving up, but it’s not. It’s about moving forward with an open mind and a sense of hope. It’s about letting go of old expectations so you can fall in love with your child as he or she is. 

One mother, quoted in the book Far from the Tree, described acceptance beautifully when she said: “Children like ours are not preordained as a gift, they’re a gift because that’s what we have chosen.”

Conflicting Feelings

It might seem confusing, but even in the acceptance phase, conflicting feelings can coexist. You can accept your child’s condition, yet continue to pursue treatments; love your child, yet wish they didn’t have these issues; feel a sense of joy and optimism, yet still experience sadness; be worried about the future and still maintain hope. Embracing this paradox is healthy. A study conducted by Dr. Elizabeth Larson found that parents who accept these conflicting feelings gain a greater sense of control and improve their optimism.  


Book: Not What I Expected: Help and Hope for Parents of Atypical Children by Rita Eichenstein, PhD

*If you have symptoms that are affecting your day-to-day life or relationships with others, please seek the help of a professional. The National Alliance on Mental Illness (“NAMI”) is a safe resource. They offer a free help line that responds personally to callers, offering information and referrals as needed. 

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