Family Support: Chronic Grief

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When you have a child with a GRIN disorder, you embark on a rollercoaster of emotions. 

You of course must deal with the worries and uncertainties of your child’s medical condition. On top of that, there are also the worries and fears about what the future will hold for your child and how they will manage if you, as parents, are no longer around to care and advocate for them. Then, there is also the stress, frustration and sheer exhaustion of constantly having to fight for everything your child needs. Whether it is medical treatment, care, therapies, education, medical equipment or anything else. As a parent of a child with a GRIN disorder, you unfortunately quickly discover that there is very little knowledge about these group of disorders. In fact, most people have never even heard about GRIN disorders. On the bright side, you have found this website and may have encountered similar groups in your home country. We are here for you in these difficult times, as other families have been for us.  There is an ever-growing community and we encourage you to join to share and to learn about GRIN disorders.

On top of all of the above, many parents also struggle with the feeling of grief. This may sound very strange as your GRIN child is very much alive. Chronic grief is therefore not about the loss of your child’s life. Chronic grief is instead grief for the child you dreamed about when you as parents were expecting your child. It is grief for all the hopes and dreams you had for that child and for the realization that they will possibly never come true the way you imagined. It is grief for the milestones that your child may never meet, for seeing other children of the same age progressing in a way your child will never be able to. 

And although you love your child with all your heart and cannot imagine life without your child in it, this grief is still something very real that you may have to acknowledge and deal with. 

Although 60-70% of special needs parents suffer from a burn out and struggle with feelings of grief, stress and exhaustion, regular psychologists often lack the knowledge and the treatment options to really support and help these parents. 

Fortunately, there are counselors and psychologists who specialize in chronic grief and chronic stress which can help you work through your feelings of grief and loss. 

Often these specialists work from their own experience and can help you analyze the complex mix of emotions you have for your child. It is very healing to know that although you may struggle with your child’s GRIN disorder and may even resent it, this does not make you a bad parent at all. It is the disorder that you resent, never the child! 

Also, it can be very helpful to understand where feelings of frustration, and maybe even anger, come from. It is not your child or his/her behavior that is frustrating, it comes from your fears for the future when you are inevitably no longer able to take care of and advocate for your GRIN child. 

Unfortunately, grief counseling is often not or only partly covered by health insurance. However, it is very much worth the investment. After all, a happy parent makes for a happy child! By googling for chronic grief counseling, you can find specialists near your place of residence. Also, your local GRIN support group may be able to provide you with referrals. 

Prof.dr. Manu Keirse (1946, Dudzele, Belgium) is a clinical psychologist and specialist in dealing with loss and grief. He was one of the first to address chronic grief in his books and publications. He is now an emeritus Professor of the Faculty of Medicine of the Catholic University of Leuven. On the internet you can however still find his books, interviews and podcasts that may also help you deal with chronic grief.

Acceptance And Commitment Therapy: 

Within Acceptance And Commitment Therapy you learn to stop the pointless fight with annoying thoughts, emotions and physical sensations. This allows you to better focus your attention on the things that really matter to you in life. At the heart of Acceptance And Commitment Therapy is the philosophy that fighting unavoidable circumstances ultimately comes at the expense of a vital and valuable life. The focus of Acceptance And Commitment Therapy is on increasing psychological flexibility. Themes that come up include, accepting that difficulties are part of life, breaking free from difficult thoughts, creating a more flexible relationship with yourself, knowing what you really want to do with your life, living in and enjoying the moment more.

Acceptance And Commitment Therapy is partly based on the principles of Mindfulness. The latter may consequently also provide you with tools for dealing with chronic grief and stress.

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