To the Grieving Mother of A Special Needs Child

Recently, my daughter refused to participate in her preschool Spring Concert. While onstage… by crying and yelling.

This wasn’t surprising. I’d seen this play out before.

As I carried her to her classroom, a line of her peers walked independently behind her, and their parents were listening to announcements in the auditorium. My daughter laughed loudly. Her whole class stared back at her, then at me, almost as if they were asking me something with their eyes. They were wondering if a meltdown was to come. They seemed to question if they themselves would be okay or if they should get out of the way because a violent tantrum was on the way. And it took everything in me not to break down in tears in front of these unknowingly unkind little 3 and 4-year-olds as my heart broke into a million tiny pieces while they stared at her, telling me a story in her little gibberish language.

I’ve seen these scared, questioning faces before. I’ve watched kids look at me pleadingly with eyes that say, “help me.” I’ve watched the girl everyone wants to play with throw things at my daughter and yell at her. I’ve seen parents look at my daughter flailing and losing her ever-loving mind over something that seems completely ridiculous, like getting the red car instead of the blue one.

The looks hurt me, and thank God my daughter has no idea what the looks, faces, or most words mean. Because, even though she has no idea that people are staring at her, judging her, deciding they want nothing to do with her, I know what they’re thinking, and I grieve every time these incidents occur.

As a parent of a special needs child, I understand that there is no “normal” day, no “normal” experience, no “normal” at all for my daughter. Nothing about the way her brain works, the way she processes everything she sees, feels, tastes, smells, and hears, is like the other kids around us.

My daughter works every day to learn how to play with your child. She works every day to learn how to eat foods without gagging, or hearing sounds without feeling like her head will explode. She will ultimately spend years, if not decades, in some kind of therapy, learning how to live in a world that wasn’t made for her.

So, I grieve. I grieve for what is not. For what will not be. I have to stop myself from anticipatory grief, which means grieving before something ever even happens. Will she ever have a friend, a first kiss, or have a full conversation with someone her own age? I dare not ask these questions because I would get lost in the sadness of all the things I want for her and the things that are really just normal expectations for most parents to have for their children.

As parents, grief comes all the time. Any time there is a change, something is lost, and there is, to some degree, a need to grieve with every loss. We grieve the loss of the newborn stage (after having twins, I’ve never missed this stage, but I’m told people miss the constant snuggles and baby smells). We grieve the day they go to school and will never be at home full-time in their little bodied form. We grieve as they get older and miss the game-winning goal, or when the boy they like asks another girl to the dance. We grieve for them and alongside them (probably with ice cream in hand). As these perfect little people transition into new stages and grown-up people, a part of them is lost, and we are left with nothing but the memory of their former self that we loved so much and spent so much time with that we’ve memorized every tiny part of them in our hearts. And so, we grieve.

As those who hold them so dearly, we grieve for them, we grieve on behalf of them, we grieve with them. Maybe that’s just an unspoken part of being a parent- constant loss and then grief.

Since the level 2 autism diagnosis of my daughter 6 months ago, I have grieved every day. Her life will never be what I thought it would be. Everything is so hard. It’s hard for me because it’s a lot of work and a lot of frustration, but it is a million times more work and frustration for her, and she doesn’t even know what she’s working towards. I grieve because of the way the world treats her, like those 20 little eyes staring at us that day at the Spring Concert. I grieve because I want to tell her that it will be okay and that I will never leave her and I will fight every freaking day for her to live the life that she wants and for everyone to see how wonderful she is and that everything will be okay because she is loved by me and by God and everything else is just details. But she doesn’t understand that now. And even if she understands this love and inherent worth one day, she may never believe that what others do and say to her doesn’t matter. She could live the rest of her life being looked at by people the same way those kids in her class did, those kids who don’t have to go to therapy twice a week, who don’t have trouble understanding words, who don’t feel physical pain by the lights of that stage or the loud volume of the music in the auditorium on that Spring Sing Day.

And so… I grieve.

For all of you out there grieving over the loss of what was or what you thought it could be or what never was in the first place, all on behalf of the person you love so much that you would gladly bear the pain and weight of what they’re experiencing, you are not alone.

All we can do is dry our tears and be strong. We can love our kids through their own grief, fighting like hell the whole time to help our kids get the tools they need to heal, to be better than the things that the world will do to them. We can encourage them to stay strong themselves in the midst of all the sadness, because there is good too. We’ll grieve until we don’t have to.

Additional Resources

• Parent feelings: children with disability, autism or other additional needs
• The Grief of Parenting Children with Disabilities
• Oregon Family to Family Health Information Center 
• 50 Great Websites for Parents of Children with Special Needs