Those Who Mourn

by Allison Brown

My child stands before me, tears streaming down their face, which is bright red with emotion. Pain is etched across their features. “Why can’t I be normal like everyone else?” they ask, collapsing into my open arms, sobbing. My heart shatters into a million pieces.

Oh, my dear child, I think to myself. How can I alleviate the burden you are carrying at such a young age? I have often said I see the beauty in autism and how my children perceive the world, but I also recognise the heavy cross they bear due to it.

As a parent, I feel like I’m in survival mode, riding the turbulent waves and holding tightly to my child’s hand. With each new diagnosis, and with each meltdown, panic attack, breakdown, and wave of anxiety, I stand by their side, often trying to carry their burdens on my own shoulders. No one prepared me or warned me that my heart would break a million times in a single day. No one told me that when one child in the family is diagnosed, the whole family carries that diagnosis. No one warned me about the loneliness I would experience or the guilt of wondering if I could have done something differently. And no one warned me about the grief I would carry for my child and myself as a parent raising children on the spectrum.

It never occurred to me that my child might also go through stages of grief when they start to realise that they are different from their peers or when they learn about their diagnosis. My little one understands they have a diagnosis and has been in tears from frustration, not understanding why they react a certain way in specific situations. They have expressed that their reactions aren’t truly them; it’s the ASD or the ADHD, and they feel they have no control over these diagnoses.

Autism has shaped our family in many ways. We’ve learned to be flexible and ready for a moment’s change. At the same time, we’ve found that a lot of preparation and advance notice can help our child (and us) know what to expect, from the clothes they will wear (which are carefully selected due to sensory disorders) to the location where we are going (unfamiliar environments can trigger feelings of stress and anxiety ).

We’ve also found that open communication and a supportive environment can make a world of difference. Sometimes, no matter how much preparation has gone into planning, we may still end up with a child who is overwhelmed, in tears, and needing to hide under a blanket or leave to go home. But we’re learning to navigate these challenges together.

It is not uncommon for me, when we are out, to be juggling a hyperactive child and another child clinging to me and burying their head into my shoulder in tears. Sometimes I look at other families with envy and sadness as I watch them out and about. I watch the children thrive and ease into activities with other children, happily socialising. And my heart breaks when I see my children struggle to meet milestones that most parents take for granted. I grieve because I know and understand my children’s struggles and the pain they carry around with them.

However, amidst the struggles, there is also a profound sense of pride to watch them give their all and work hard, determined to meet these milestones and goals. Their achievements, no matter how small, fill me with joy, and I celebrate each one of them. In our house, we celebrate the tiniest milestones with enthusiasm, reminding us of the progress we’ve made and the journey we’re on.

Mother and Three Children, Elizabeth Nourse, 1906.

I realise in my role as their parent, caregiver, advocate and their safe space, it is also my job to walk with them and help them navigate their feelings of grief as they come to terms with their diagnosis and what it personally means for them. As I hold my child in my arms, providing them the comfort they need, I reflect on my journey of accepting my diagnosis of multiple health conditions at barely 13 years old. I ponder how crucial it was for me to be able to explore my feelings and thoughts, to express my anger and frustration over the surrounding events that led to my diagnosis. I ponder the necessity to be allowed to grieve the person I was before I became sick and to grieve the person I thought I would become but never did. I also grieved over losing my identity to the illness. I know in my heart of hearts that helping my child through this is to show them that they are seen, heard, and loved exactly as God has made them. To help them understand and acknowledge their worth and identity through Jesus Christ, allowing them to see that their uniqueness is a gift, even though it can feel like a heavy cross. It is a gift that one day they can use to walk beside other families who are struggling on their journey of autism.

I have cried and sobbed at every new diagnosis. I have cried and sat in silence, stunned and overwhelmed with the list of recommended therapies. I have turned my phone off, not able to talk to any more doctors, teachers, therapists or insurance agencies, and I have ignored my emails as my inbox became full with requests for forms to be filled and my signature on paperwork.

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I have cried full of grief, reading the results of the latest assessments, knowing the implications this would have on my child’s life and their future. I have felt fear for their future and the thought that one day I will not be here to help them and keep them safe from a world that can be cruel. I have carried these fears and the grief. I still do at times.

But if I do not surrender all this to the Lord, it will eat me up. I don’t know why the Lord has allowed multiple diagnoses in my family or why He gave me childen with such specific needs. Still, I do know that by surrendering it all to the Lord, He will use it all for a greater good, for my salvation, my husband’s salvation, our children’s salvation and the salvation of those around us. By handing my grief over to the Lord and entrusting my children to Him, I am allowing the Lord to work in my and my husband’s lives and the lives of my children. I am trusting the Lord that He is allowing these trials in our lives because He is preparing us for something greater that we are yet unable to comprehend.

And so, while I still carry a grieving heart, I find comfort in knowing that the Lord has a plan in all of this. He is in control; I never was. I pray for the Lord to come into my life and the lives of my husband and children, and ask Him to take over our lives, while comforting our hearts and pouring out His graces in abundance, so that we may grow in faith, trust, and courage to continue walking this journey of autism.

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