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
Paperback Radio (paperbackradio.com) is the world's first 24/7 station about books, writers, and readers. And I was blessed enough to be interviewed by them this morning for Grace Bound Books and The Rainbow-Colored Grass on Our Side of the Fence! A little nerve-wracking with trying to focus on the interviewers questions while repeating to myself, "Just don't say 'um!'" Click on the link below to hear the interview!
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 have been writing this post in my head now for the better part of this last year, starting with Jerry's first day of school.
School days, ahh the rituals. Whether you homeschool of send your kids to school outside your home everyday, there are annual rituals that mark going back to school. Lesson plans are made, curriculum and backpacks bought. Figuring out co-op schedules and extracurriculars, school supply shopping, open houses to meet teachers. It's a frenzy that is both exciting for the anticipation of what the new year holds for your child and a little bittersweet too, as it marks another rite of passage, another year and grade older.
For most parents, back to school routines are just that by now, routine. You've been there and done that enough times now that it's really no big deal. You drop them off on their first day with hugs to quell those first day jitters and encouragement for what lies ahead.
Then there are parents of special needs kids. "Did I remember to pack the only food he will eat? I can't forget to give them a supply of his lunch time medication and a prescription so they will give it to him. Does he have his iPad? I wonder who his teacher will be this year and if she has a background in behavior therapy. I hope that one boy who he fed off of last year behaviorally isn't in his class this year...for the teacher's sake. Did I put enough independent activities in his classroom box so the teacher can keep him busy while she is helping other students? I wonder what life skills they will be teaching this year. Did I pack his toilet wipes in case the aide needs to help him wipe? Did I pack an extra pair of clothes for his locker in case he has another accident? Does he have socks to keep at school for the sensory gym? I wonder who his aide will be this year? Did I remember to send his token boards back in and behavior reinforcements for them to use to motivate him? I wonder what days he will be pulled out of class for speech therapy and did I remember to give them his latest evaluation from All Children's? Did I pack him snack cart money so he has something to work for? What are their PCM procedures this year (professional crisis management)? And the list goes on! It's crazy and that's just MY list! Other parents may worry about does their child's school have cool down rooms where kids can be kept safe during meltdowns and how do they prevent and deal with "runners?"
Special needs kids are, well, special. And special needs classrooms, schools, and teachers need to be special too. And here is where my experience gets more personal. Because we had such a different school year this year than we did the previous one, I have a unique perspective that I pray other special needs parents will never have to gain.
Both this year and last, Jerry attended schools designed to educate and meet the needs of special needs students. The similarities stop there. Let me elaborate. I will use the name of Jerry's current school in this post, the Impact Academy, because they are wonderful and I am proud that he goes there. Out of the modicum of respect I have for the unanimity of his previous school, I'll call them "Mace," which just so happens to rhyme with their actual name and has as many letters. Oops.
Jerry's last day of school at Impact for this year was today. In the photo above, you will see a picture he came home with, as well as a thank you card from his teacher. A thank you card. Any of you who personally know of Jeremiah's behavior struggles this past year know that, if anything, we should be writing thank you cards...to the teacher, aides, administrators, janitors, therapists, and ABA's. We are forever indebted to them for their patience and unconditional love with Jerry this year. And yet Ms. Jessica, in her thank you card to us, used words like "blessed" and "amazing" when speaking of her opportunity to teach Jerry. On the picture that had all of his classmates' and friends' fingerprints, she described Jerry as incredible, smart, funny, caring, and loving.
In the end, the totals were 73 gold days, 31 silver, and 48 bronze (being days that physical aggression was routine). He was Student of the Day 7 times and finished strong as May's Student of the Month. There were never any tears of not wanting to return as we had witnessed the previous year and I think some ground was thankfully regained when it came to Jerry's self-confidence and esteem.
And that, is special education at its finest.
I am a Christian. I am a wife. I am a mom. I am an author. In that order.