Todays marks a full month since my mother passed away. It’s been a busy month, a sad month and an emotional month.

Just like last time around, when I lost my Dad, this time has also been a time of pre-grief as well as the grief that comes with the final loss. Ever since we received Mum’s stage 4 ovarian cancer diagnosis last September, we’ve been in a state of grief. Grieving her diagnosis, her treatments, her health setbacks, her pain, her loss of independence, her emotional state and her uncertain future.

While I shielded the kids from much of this grief, they were not immune. They knew their Nan was unwell. They were aware she was receiving treatment that could make her sick. They could see the subtle changes that occurred in her appearance over those final months.

I did what I could to prepare them and to support them. We made sure they spent time with Nan and gave them the chance to say goodbye before we lost her. We spoke openly about death and were as honest as we could about what was going to happen. We were there to hug and love them as they processed her loss and gave them control over whether they wanted to pay their final respects at her funeral.

But dealing with grief as a special needs parent is hard as grief, by it’s very nature, is so unpredictable.

Grief isn’t something you can fully prepare for

Just like last time, I’ve been surprised at how unpredictable grief can be. There is no way you can know how you or your kids will deal with death and loss. This makes it incredibly hard when you’re a special needs parent, used to anticipating reactions, avoiding triggers and preparing your child for the road ahead.

I thought we’d be better prepared this time around as we’d been through this experience before. Losing my father, my kids’ Pop, to cancer three years ago, gave us a taste of what we might expect. I thought things would go the same way this time around, as we said goodbye to my Mum in eerily similar circumstances.

However, things have not been the same. First, I’ve been affected a lot more than I expected. Losing Mum has made me grieve for her, but it’s also made me grieve again for Dad. Last time, I had Mum to concentrate on, Mum to lean on, Mum to be with. I was focused on caring for her and supporting her, which helped in those initial months following Dad’s death.

This time around, I have no such focal point. I just have the raw pain, loss and reality of losing both my parents in the space of three years. It’s made it hard for me to be there for my family as I’ve struggled to come to terms with this reality for myself.

My kids have also been similarly affected, now losing both grandparents from my side of the family. They’ve also reacted differently, three years on. They are older now and have expressed their loss in very different ways.

Grief is different in everyone

Gilbert was angry. Really angry. He was angry at cancer, for taking another grandparent from him. He was angry at the world, for allowing this to happen. He was angry for me, being left an orphan. He cried and raged as he tried to come to terms with her loss. While the anger has now faded, he is still overwhelmed by her loss and often tells me how much he misses her and wishes she was still here with us.

Matilda was quiet and remote. She didn’t cry or express much emotion after the initial pain of the news. Last time around, she cried a lot, struggled to cope with talking about Pop and became upset whenever she saw a photo of him. This time, she is calmer and more accepting of the constant memories of Nan around our home. She has confided in me that she’s worried she hasn’t been as upset this time around – I told her grief is different in everyone, every single time.

Delilah was very upset and cried for some time after we shared the news. She felt it very deeply this time around but seems to have bounced back (as 8 year olds tend to do). She likes talking about Nan and tells me she misses her and wishes she was back with us. She was too young to really know what was going on when we lost her Pop, so I had no idea what to expect this time around.

Dealing with grief as a special needs parent -

There is no roadmap when it comes to grief

As handy as it would be, there is unfortunately no roadmap to help us deal with grief. Just as there’s no right or wrong way to express grief. It’s a highly personal and individual experience and it will vary from person to person and from loss to loss.

While dealing with grief as a special needs parent can be tricky, there are some things you can do to make the experience a little easier for you and for your family. I don’t have all the answers, but I do know that having an open mind, supporting their needs, accepting their behaviours and seeking help can makes things a little easier at this difficult time.

Be open and honest with your kids. Talking openly and honestly about death will help demystify the grieving process. Sharing your own emotions and feelings will also aid in teaching them there is no shame in crying or in feeling sadness. Being honest and not hiding your own grief will help them understand, accept and process their own feelings.

Give yourself space to grieve. You need to be there to support your kids but you cannot do this effectively if you don’t give yourself the time and space to grieve too. Don’t bury your own feelings or burn yourself out caring for others. Be kind to yourself and acknowledge that you need kindness, compassion, time and space as well.

Expect the unexpected. There is no way any of us can know how we will react to death and loss. You may assume your child will behave in a certain way but they may react completely differently to what you expect. It’s best to be open-minded and prepare for anything, whether it’s sadness, anger, shutdown, meltdown or no reaction at all.

There is no right or wrong way to grieve. We can’t judge anyone for their approach to dealing with grief. We may feel our child’s reaction is not appropriate but our role is to support them, however they express their grief. The last thing they need is to feel judged for their behaviour as they work through some heavy duty feelings. We need to support them, not judge them.

Seek support and use resources  If you need extra help and support, ask for it. If you are emotionally exhausted, it will be nearly impossible to deal with your kids’ needs, on top of your own. Don’t shy away from asking for help or seeking out resources to help your family through this difficult process. There are so many resources on death, grief and loss that you could reference for your own needs or read in conjunction with your child. Here are a few resources to start with:

Guide to Writing Social Stories About Grief & Loss

5 Ways to Help Kids Through Grief

Social Story About Death

Supporting Kids Through Grief & Loss

Explaining Death and Coping With Loss

Carol Gray’s Guide to Loss

Grief is is never an easy time for anyone. However, in my experience, adjusting your expectations, giving yourself space to process your emotions, being patient and understanding with your kids and seeking out practical help are all positive ways to deal with grief as a special needs parent.

What other suggestions can you add to this list?


Featured Image by Ben White on Unsplash