Cycles of Grief and Parenting a Child With Special Needs

Jennifer Minnelli, M.S., CCC-SLP

The grief process, for a parent coming to terms with having a child with special needs, differs from the grief process that one might undergo with the death of a close family member. At a certain point, with a death, there is the finality of the headstone, and the cold absence of that dearly beloved person. However, with a child with special needs, parents and siblings can cycle through the different parts of the loss, depending on what is going on developmentally with the child, and what is going on within the family or the community.

Here are some examples of the Stages of Grief (Kübler-Ross) married with my own personal self-talk:

Denial: “This is not my child. She can do what you’re asking, under the right conditions. No way is my child in the same developmental category as that. I completely disagree with the diagnosis. I guess it’s me and my child against the world…

I was in denial for most of my child’s preschool experience. It made it hard to engage with her teachers in a way that supported my child.

Anger: “Damn this situation!! I hate myself, this child, her dad, my parents, and everyone else in the world! This sucks! Why is everything always so hard on me?? You stinking neurotypical brat!!

Feeling stuck on my anger for several years wasn’t helping anyone. It was especially hard on my marriage.

Bargaining: “If the sun, moon, and stars align themselves, and I am a good mother who serves only gluten-free items, and follows through with the sensory diet, then my child will miraculously, magically become neurotypical. Did you see that? She just made eye contact! Those clinical psychologists don’t know what they’re talking about!” 

This thought pattern made it difficult for me to realistically support my child with strategies or to seek help for her.

Depression: “What’s the use? Nothing I can do makes any difference. Nobody cares about me. Nobody loves me or my child. My child is who she is, and there’s nothing I can do about it. The world sucks. I might as well sit in my messy house and let my kid stim on this talking stuffed animal.” 

I was immobilized when feeling this way.

Truthfully, these different themes have played themselves in my brain, from day to day, for the last six years — it was painful.

Acceptance: “My child has some amazing strengths. There is a place in the world for her. I will do everything in my power to make sure she has what she needs to live a productive life.”

This is balance between recognizing what’s really going on but also persevering and engaging with the reality of our situation.

Getting Help

I believe fully in the idea that everybody has demons and skeletons (it being October and all). We can all benefit from good mental health services, as parents, children with special needs notwithstanding.

You need to be on top of your game to take care of both your child with special needs, and your neurotypical child(ren). Not to mention your marriage, or partnership. When you’re not feeling great, it’s difficult to make lunches and do laundry, let alone care for others’ emotional needs, and referee the complex dynamics in a family system.

A True Story

I’ve struggled with chemically-based depression for my entire life. However, there’s still a real stigma attached to the mere mention of mental health illness. So, it hasn’t always been easy to find the right kind of help, or even admit that I need it.

From my first pregnancy to my second pregnancy and then on to when my oldest was diagnosed, I cycled through several episodes of grief, depression, bargaining, and anger. When my daughter was in first grade, after two years of good counseling, support, and lifestyle changes, it hit me. I still felt terrible. I didn’t want to feel terrible, and I didn’t want to be on the roller coaster of feeling sublime when she had a great day, and down in the dumps when she had a hard one. I cycled through all the stages of grief, sometimes within a single day. It occupied my thoughts, put a strain on my brain’s ability to function, and ultimately, left me at a dead end. 

One day I finally went to Urgent Care and told the doctor there that I was having an acute depressive episode (which I was). At the time, I had only a counselor who supported me in this choice, but I was not getting regular medical care from a primary doctor. I was lucky that the urgent care doc believed me, prescribed something, and made me promise to find a regular doc to manage the outcome with the prescription.

I will probably be on the meds for the rest of my life. And that is fine with me. The meds keep the lows from getting too low, and keep me grounded in the reality that my child is different from other children. But here’s what else they do: they open up all of this space in my brain to help fight the good fight for my child and for other children and their parents. They help me navigate challenging parenting dilemmas. They help me see the best in others, and find the positive in people.

The Dalai Lama talks about happiness as the very purpose of our lives, and I am starting to understand what he means.

“I believe that the very purpose of our life is to seek happiness. That is clear. Whether one believes in religion or not, whether one believes in this religion or that religion, we all are seeking something better in life. So, I think, the very motion of our life is towards happiness…”

In our family, things run much more smoothly when we have a plan in place that is supportive of my mental health. This includes medication, optimal sleep, down time, time to write and work, time to exercise, and an organized living space. And let’s not forget date-night! My brain needs these stabilizers in place to manage the rough afternoons when the play dates don’t work out, to problem-solve sibling rivalry, and to find creative, conflict-free ways to keep my kids media-free for several hours at a time. And I imagine that, as my kids mature, I will need some reserves of happiness to confront what is to come.

These days, I am more evenly in the acceptance phase of my grief. Don’t get me wrong — feelings come up. Feelings of frustration, anger, and especially regret for the time that I spent wallowing, bargaining, and cut-off from help.

But I am learning to front-load the happiness with little treats to myself: setting small goals, coffee dates with supportive friends, inspirational reading, positive talk with my partner, treating myself to a special, but inexpensive purchase. I front-load on happiness by simplifying with a Friday night take-out dinner for hubby and me after the kids go to bed. Another way I front-load happiness is by saying no to volunteer obligations. I front-load on happiness when I let my kids stay in their zone of proximal development, which can mean staying home and playing board games on the weekend, rather than going to a crowded place with lots of other people.

I have no advice or helpful tips. Everyone takes their own path to acceptance, finds their own happiness.

With acceptance comes the power to engage with the world on important issues. I delight in both of my children for being the people they are, and I am finding ways to help them follow their happiness. In the end, I trust that being a model of happiness and good self-care will be a gift that I give them, and that they will learn to take care of themselves in the same way, when the time comes.