Anyone can be a special needs parent. It’s the luck of the draw and, in a world of vastly different individuals, there is an endless supply of people who could potentially have special needs children.
Of course, you usually hear inspirational stories. You read about the superheroes and the autism parenting warriors. The tales are about overcoming and reaching such great heights. Beacons of hope and stars of their children’s life, these moms, dads, and family members are thought to be the rule, rather than the exception.
You don’t hear about the others, though. Special needs children can be born into any family and that means the selfish, spoiled, abusive, narcissistic, arrogant, and lazy get to have them too. It stretches across every possible demographic and personality type. For every Gallant, there’s a Goofus.
For those without a special needs child, it’s easy to get pulled into the narrative that some of these other parents might create when using their kids to evoke sympathy. Plug any taboo and personal subject into the place of special needs and it’s the same story.
If you see someone handling a terminal illness in their family and you don’t have one in yours, you tend to defer to their approach as the most common one. If they spend the day telling you how much of a hassle it is and roll their eyes when talking about the person they have to care for, you don’t fault them for it. You pity them and accept it as the reality of the situation. It must be so hard. You don’t know. Who are you to judge?
Find another person in their position, though, and it’s a different story. That person, perhaps handling their own sick loved one with care and compassion, will come along, see this display, and ask, “Yo. What are you doing? I know this is hard, because I deal with it too. But, they deserve your support. I don’t care how hard it is. Give that person some respect.” It’s almost like dealing with the same issues allows a person to speak a truth, which would be uncomfortable for an outsider to realize, much less vocalize.
And that’s how I sometimes feel as a special needs parent.
My son is non-verbal with autism. He will require care for the rest of his life. While I can help teach him life skills, there are no guarantees that he will retain some or any of them. My most important mission in life is to give him the tools to help himself when he grows up. The morbid hope is that when I die, others might not have to do as much.
I accepted these things. It wasn’t easy, but I did. Those first few years were hard. There was guilt and blame and worry, especially before he started to grow into his personality. I loved him for who he was and saw the ways his “disability” helped shape his wondeful persona. It took a while to go from autism awareness to acceptance to appreciation. Eventually, though, I did it. That’s what is supposed to happen.
There becomes a tipping point that goes from grieving the life you expected for your young child upon diagnosis to not accepting them for who they are when they have become full-fledged kids. When he was two, I was scared and worried. At ten, he’s my son and I love him more than I ever dreamed possible.
I’ve watched as some other parents in very similar situations haven’t. I’ve seen a mother laugh to her friends at the birthday party for her six-year-old special needs child. She half-joked how much she “hates it” and the pills she wished she had in order to enjoy the joyous occasion. The gist of it all was that every year is another terrible celebration of how they might never achieve certain goals.
I saw her friends, without special needs children, join in on the laughter, all with the sweet little boy running around the room on his birthday. This woman made her own child an object of mockery as well as her own personal pity party at what should have been his special day. It wasn’t about support. It wasn’t about love. Sadly, it also wasn’t out of character.
That’s not me. Don’t pity me for my child. I don’t want it and I won’t have it. Understand that there are going to be hard times for us and many of the hardest are still left to come. Please be patient when I worry that an outing might be “too much” for him or might leave an event early because of a potential meltdown. Those things are part of my life. Don’t pity me, though. If you knew the joy he brings into my world in exchange for the hard times, you’d know that pity is the last thing I deserve.
Some people live for that, though. They only itemize their child along with other issues they deal with in emails and posts for those to leave sad face emojis on. They don’t accept what the universe has given them and they turn their nose up to the face of God; refusing to find the obvious beauty in the difficulties they have made all about themselves.
These are the special needs parents you don’t read stories about. They’re the special needs parents who would be just as miserable if their kids didn’t have special needs. They’d be miserable with all the riches in the world. They’re miserable through and through, and their child isn’t the cause. They’re not even a symptom. They’re just another thing to add to the “poor me” pile.
Support? Yeah. Support is fine. Confide in your friends during your toughest times and let them help you through it. Seeking a sympathetic ear is quite different than evoking pity. Listen to my frustrations when dealing with forms and paperwork from special needs organizations. I will listen to yours about little league directors and college applications. It’s not the same, but it kind of is. We’re parenting.
Parenting is hard. It’s our job to do it. My tasks might seem more daunting than others and sometimes that might be true, but not always. I’m a dad. Love eliminates the need for pity.
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