A few weeks ago, I wrote a blog post entitled “The Unique Grief of Special Needs Parents.” It went a little viral. I’m still receiving daily comments as it finds its way around the internet.
Most of the commenters are from those who can relate completely to the idea of mourning the loss of the dreams and ideas and hopes you had for your child.
And let me say, for the record, that just because a parent mourns this loss doesn’t mean they don’t still have hope or dreams for that child. It’s just that the dreams are different.
The best explanation I’ve ever read is entitled Welcome to Holland by Emily Perl Kingsley. Her words describe special needs parenting more eloquently and perfectly than I ever could.
Maybe it’s because tone and mood are hard to communicate over the internet, but several of the comments I received expressed genuine concern about my grief. I got the impression that after reading my post, they envisioned me cocooned in some deep, dark depression from which I could not emerge, wallowing in discouragement and despair over the terrible reality that my son had been diagnosed with autism.
And so I want to set the record straight.
I am not in despair. I am not wallowing. I am not even depressed.
The truth is, I have a tremendous amount of joy in my life. Yes, there is pain and the ongoing process of grieving over my son’s diagnosis. But grieving is a path, a journey. Just google grief and you can easily discover the many stages of it. It’s different for everyone and for every circumstance.
One of my favorite proverbs says, “Each heart knows its own bitterness, and no one else can share its joy.” (Proverbs 14:10.) So insightful and true. The Hebrew word used for “bitterness” can also be translated “grief.” Every person experiences grief of some kind during a lifetime on this earth, but none of us can experience it for anyone else. We each get our own. And likewise, we each get our own joy.
Yes, there is a unique grieving process for special needs parents.
But there is also a unique brand of joy.
I never expected to have a child with special needs. I don’t think anyone does. But the reality is that I have a child with autism. It is a core part of who he is and because we live in a society in which autism is not the norm, his autism-related behaviors are viewed as odd and socially unacceptable. And this causes difficulty. Which causes pain for him and for those who love him, me included.
But if you lined up a row of nine-year old boys a mile long and told me to pick just one, I would still pick him.
A thousand times over I would pick him.
Because this one, quirky and adorable little boy — well, he’s mine.
I considered writing a post just about my son. About how wonderful he is and all the ways he brings joy to me.
But I need to express even more than that. Because I think there are experiences of joy that all special needs parents feel. I hear the same thoughts and sentiments over and over from parents who are on this road.
So here are just a few of them — the many ways that special needs parents experience their own unique brand of joy.
The Unique Joy of Special Needs Parents
1. We get to live with eyes wide open
Before I had a little boy with autism, I walked through life with blinders. I was self-obsessed with how others’ words and actions and behaviors inconvenienced me. I never stopped to consider that there might be more to the story. I assumed that children who misbehaved were the product of poor parenting and lack of discipline. I was the perfect parent before I actually had children. I was judgmental and condemning, with an air of superiority. I planned to be in control of my kids when I had them and every thing would work out just fine, thank you very much.
And then God used autism to open my eyes. There is a vast world of people out there who need compassion and understanding and love and kindness. They need to know that they are not invisible, that they matter. They need to know that there is still a shred of goodness left in the world, that people still have the capacity to sacrifice, to give selflessly, to love without condition.
There is a whole upside down kingdom at work in the universe, the kingdom of which Jesus spoke and taught, but it is invisible to those who are spiritually blind. The ninth chapter of the gospel of John, relates this truth as Jesus deals with spiritually blind Pharisees after healing a physically blind man. It becomes crystal clear that the ones who are most blind are the Pharisees themselves. And the man born blind who is relentlessly questioned finally responds to them in his frustration, “All I know is that I was blind, and now I see.”
Truer words were never spoken. Like Saul who was blinded on the road to Damascus and then saw the light, I walked through life blinded to the upside down kingdom until my son’s autism opened my eyes. And now I would never go back.
2. We get to love people for who they really are
All of us human beings are, at our core, selfish. At the end of the day, we mostly do the things we want to do. Often even our most loving relationships are still tinged with the thought of “what’s in it for me?”. But loving someone with a disability can change all that. Disability reminds us that humanity is imperfect. Those of us without pronounced disabilities have the luxury of walking around and pretending that we have a handle on things. But people with disability don’t get that privilege. Their imperfections are on display for others to see. I think that’s why people are often so uncomfortable with disability. It reminds them of their own weaknesses and shortcomings.
To love someone who is, in the eyes of the world, visibly flawed, is to love the way Jesus loved. It is to be real and authentic and vulnerable and whole-hearted. Jesus touched lepers, healed the demon-possesed and dined with the unlovable, the scarred, the lonely. What a privilege to walk this same path with the Savior.
3. We get to know ourselves.
Caring for a child with special needs is stressful at the best of times, and traumatic and physically brutal at the worst. It turns a person inside out. There are parts of me, thoughts and ideas and beliefs and personality traits that I never knew existed until I had a child with autism. He has started me on a journey of self-discovery, and on a path toward self-acceptance, that I wouldn’t have willingly chosen for myself. And I’m so glad.
4. We find happiness in simple things.
Parents of special needs kids don’t take for granted the smiles and hugs and “I love yous” of every day. Those seemingly small things become colossal. We are always on the lookout for the precious, tender moments, the tiny victories. For some, the moments are too few and too far between. But we are primed to watch, to be ever mindful, and to notice. And when the moments come, they take our breath away. Somehow, even in the midst of hardship and struggle, we learn to count blessings, to experience gratitude in a whole new way, and it is beautiful.
5. We experience the fellowship of suffering.
This doesn’t seem like it would be a path for joy. But when I think of the times my son has been rejected, excluded, or bullied, I take great comfort in knowing that Father God knows this experience all too well. After all, His Son was rejected, excluded, and bullied in the worst possible ways. His Son was criticized and despised and dealt with loneliness and grief and being an outcast.
We paint a pretty picture of a white-skinned, gentle, smiling Jesus and plaster it all over our Sunday School walls, but the Bible says that there was nothing–nothing–about his appearance that was inherently attractive. He wasnt the cool kid on the block or the captain of the football team. Nope. He was poor, from a no-count town, and his own family members thought He was crazy. He was a man of sorrows.
So to know that God would allow me to get a closer glimpse of that, that he chose to give me the opportunity to walk where He walked, even if just a little — that He would trust that I would still follow Him even though the path gets awfully steep, it just draws me all the closer to Him, and helps me understand even more the love He has for me.
6. We learn to be dependent
It is the American ideal to become independent, a self-made person, strong and powerful to take on the world. I was so proud of my independence. Always in control, I was organized and fully aware of where I was headed in life. Until this.
Autism really messed up my plans. At this point I can honestly say I’m thankful. It took something that I really couldn’t handle at all for me to finally release the reins and let God have a go at it. He is a much better driver than I am. I just wish I’d let Him steer sooner.
In spite of the joy I have, joy that has been multiplied a hundred times over by my special needs boy, not to mention my other three children, there are times when we face rejection. And because of the reasons mentioned above, I can’t understand it. I can’t understand why anyone wouldn’t or couldn’t love my little boy when he brings so much joy to this world. I can’t for the life of me comprehend why anyone wouldn’t open their arms and their hearts to any child with special needs. It baffles me.
But then I decide that they — the ones who exclude, reject, dismiss, make fun of — are the ones missing out. They don’t get to share in that joy, because they never give it a chance. And honestly, that’s the saddest thing of all.
Yes, sorrow and suffering are well-known companions of special needs parents. But they are the companions who lead quietly to the mountaintop of real, unadulterated joy.
And I, for one, choose joy.