Issue 54: Ways to Survive ASD Parenting and Stay Thankful
Issue 58: Winning Ways to Share the Love with All of Your Children
Issue 81: When Special Education Fails to Be Special
I have come to the conclusion that being a special needs parent equates to being a missionary. Here's a list of the how's:
#1 - Being a special needs parent is not an occupation, but an identity. It's a lifestyle. There are no days off, no vacations, and unlike missionaries, there are no furloughs to raise support. There are reprieves, an hour here or there...maybe even six in a row if your child is in school, but even then, your are spending those hours working on behavior strategies, scheduling doctor appointments, reviewing for IEP meetings, and making sure your pantry is stocked with Lucky Charms and chicken nuggets...your child's main staples.
All this to say that, as a family, we are very much looking forward to the Joni and Friends Family Retreat at the end of this summer. There, we will be encouraged, loved on, given a chance to rejuvenate and recharge, provided with counselors and other parenting sojourners navigating this journey, and just given a chance to have some "typical" family fun. Can't wait!
#2 - Missionaries don't get a typical paycheck. And neither do special needs parents. Missionaries get support and donations from community organizations and churches, but it's not a salary. We have been humbled to receive similar support over the years for Jerry. We have received donated iPads, grocery store gift cards when he was gluten free, help with his school supplies, etc... There have also been friends sensitive to the needs of our other three kids that have stepped in to offer help with them when Jeremiah has been so demanding...emotionally, physically, and financially.
#3 - Missionaries are not always appreciated for their work by the people they are serving. This is the third way being a special needs parent is like being a missionary. I wonder some days if Jerry will ever fully appreciate all that we have sacrificed for him...the sleep, the finances, the hopes and dreams for him that may never be realized, the time. Probably not. I don't think he's capable of wrapping his brain around such things. And what about his brothers and sister? The things they can't do, places they can't go, friends they can't have over for fear of them being exposed to cursing and flying objects. And in Jerry's world, nothing is fair, we are mean, and those two things give him reason enough to tell us he hates us daily...with no idea at all how much his words tear at our hearts. Sometimes it's hard for us to separate the autism from the son. But we do not labor for the rewards this side of heaven. Neither do missionaries.
#4 - Being a missionary can be lonely at times. Number four in how being a special needs parent is like being a missionary. It can definitely be lonely sometimes. Sitting at therapy, missing out on a fellowship event because going is not in Jerry's beat interest, staying home to accommodate Jerry's routine or schedule while the others go out. These are all moments when being a special needs parent can be lonely. That's why it's so important to have relationships with other SNMF's....special needs mom friends. They get it and provide camaraderie when it's most needed.
#5 - Special needs parenting and missionary work can be physically dangerous. I think enough of my FB and Instagram posts have proved this one to be true of parenting special needs kids too. While I may not pay the ultimate price with my life like Jim Elliot did, I have been kicked, bitten, scratched, slapped, punched, pushed, head-butted, and had things thrown at me...some accidentally, but most intentionally. And then there is the sleep deprivation. I wonder if my health insurance would re-evaluate covering me if they knew just how dangerous a job special needs mom could be.
#6 - The typical World doesn't get it. I don't mean any disrespect by this, but just like we can never truly understand the life and sacrifice of missionaries unless we become one (and I mean leave our comfortable lives to live in a foreign country where we know no one), the typical world cannot truly understand or even appreciate our roles as special needs parents. "Why don't they just spank that kid? He just needs a week under my roof and he won't act like that anymore. Did you hear the language coming out of that boy's mouth? Can you believe that mom just stood there and waited while her son writhed all over the floor in a tantrum? Why do they have a fast pass reserved for people with disabilities? No one in their family looks handicapped." Until you have shadowed us for a day or unless you personally know someone who parents a special needs child or works with them, you just don't get it.
#7 - Their service is not one size fits all. The final way special needs parenting is similar to being missionaries is that our service is not one size fits all. Because of cultural and socioeconomic differences, a missionary in Kenya serves people differently than a missionary in China might.
Similarly, what works for one ASD child may not work for another. When it comes to discipline, food, therapies, or medications, all special needs kids respond differently from one another. No two special needs kids are the same just as no two people have identical DNA.
What motivates or makes them tick today may be entirely different tomorrow too. No two kids are the same and, even with the same kid, no two days are the same. And that is what makes special needs parenting so special!
And that's how parenting special needs children is akin to being a missionary!
I am a Christian. I am a wife. I am a mom. I am an author. In that order.