11 Sep 2023

From diagnosis to acceptance, a SEN parents’ grief

By Vikki McHallam, Client Services Administrator at The Eaves

As a parent of a disabled child, the raw, early days of your child’s diagnosis can bring many emotions, including those comparable to someone who is newly grieving. It is rarely discussed; the grief process SEN parents go through after diagnosis.

Therefore, it’s no surprise that the same steps are likely to occur; anger, denial, depression, bargaining and finally acceptance and much like the typical stages of grief, they won’t necessarily come in order. You might visit some of them more than once, but you will eventually settle into acceptance.

Grieving the child you had planned, and possibly the future you might have had ‘mapped-out’ in your mind, is an incredibly hard reality to digest along with the sense of guilt you might have for the grief you are experiencing. Running through your situation and telling your own story – sometimes several times over – with a professional can help with processing your thoughts and feelings.

Parents of disabled children are likely to feel extremely isolated, whether you have a great support system or whether you are navigating this new world on your own. Finding someone to share fears and frustrations with and to help shoulder the burden, is invaluable and being able to voice your feelings without judgement and free your mind to make space for the energy required for your child, is the difference between a parent with capacity to cope and one without.

Many parents of disabled children will have experienced trauma, such as a difficult birth or invasive medical interventions, and may show evidence of PTSD (post-traumatic stress disorder). Feeling like you are battling daily – with your child, services or society – can take its toll and lead to a cumulative trauma. The part of counselling that involves building trust, and a collaborative approach that empowers you and offers you choice and control, can be especially helpful.

“Welcome to Holland” by Emily Perl Kingsley is an inspirational poem that is useful in explaining the experience of having a disabled child, the poem might help you to see your situation in a different light and offer a new way to express your grief.

WELCOME TO HOLLAND by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

The Eaves Counselling and Psychology

The Eaves Counselling and Psychology Ltd is a select professional body of Counsellors, Psychotherapists and Psychologists, providing high quality psychological care Monday to Saturday between 9am and 9pm from our practices in Guildford, Godalming, Farnham, Haslemere and online.

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