I always wanted a simple life.

I raised my son, Brian, alone for eight years without the help of his biological mother; it was tough at times. Looking back through all our struggles, I wouldn’t change the time of frozen meals and Saturday morning wrestling matches for all the money in the world.

I wasn’t looking for love — actually, I figured I wouldn’t meet anyone until my son was in college. All my time and effort was going into raising him to be a good person. When my son turned 10, I unexpectedly fell head over heels in love with Lisa, a single mother raising her young son, Nicholas, who has autism. I had no clue what autism was, let alone how to connect with Nicholas. I had to find ways to enter his world, which required great persistence.

In 2014, I married Lisa, and we became a blended family. My determination to enter Nicholas’ world paid off. The payout has been a bond — one I could have never imagined having with a child that wasn’t mine. Nicholas and I don’t have long conversations since his speech is limited, but sometimes words don’t need to be spoken. Sometimes you just connect with someone.

Halloween 2014. Nicholas wanted to go trick-or-treating as the “Annoying Orange.” He said, “Frank, you be Charlie Brown.” Nicholas was a little apprehensive about going house to house, so I got my own Halloween bag, put on my Charlie Brown shirt and stood right next to him with my bag open collecting candy. We got a few odd stares from the neighbors we didn’t know (wondering why a grown man was collecting candy), but Nicholas was happy, and that’s all that mattered. I never care what others think about us. Nicholas is a person too; he deserves to have a happy Halloween just like all the other children in the neighborhood.

Brian is no longer my only child, but he took on the role of a big brother effortlessly. Brian is Nicholas’ best friend and partner-in-crime. Brian doesn’t need a lot of words from Nicholas either; he communicates for the both of them, and in turn, Nicholas trusts and adores him. It’s a dream come true, to meet the partner of your dreams and have your family blend so perfectly.

The simple life I thought I always wanted is far from where I am now. Autism has taught me about meltdowns, sensory issues, speech delays, wandering — the list goes on and sometimes changes daily. We now adhere to schedules and giving Nicholas advance notice to prepare for upcoming outings. Autism has changed my life, but I love my son just the way he is. His pure heart and innocence is something you don’t see in many children.

Promoting fathers to step up and celebrating the ones that do have become an important part of my life. With the partnership of a few good dads, www.thegoodfathers.net was started. Our mission is to encourage the relationship between a father and child. Our goal is to recognize the men who make a difference in the life of a child, not just today but every day. We’re selling T-shirts

The Good Fathers supports St. Jude Children’s Hospital as a Partner in Hope and TACA (Talk about Curing Autism.) A portion of every sale benefits both of these charities. Our goal is to have the website go live Friday, Nov. 21. We hope to promote our mission and help children in need.

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I had a few hours of free time on Sunday, and because I lead a very sexy life, I used the time to clean out my pantry. It’s a little room off my kitchen that has, over the last six years since my son came home, transitioned from a cute, chandeliered office/pantry to an enter-at-your-own-risk-I-can’t-be-responsible-for-what-falls-on-your-head room. It was time.

Photos, party supplies, glue guns, three coffee makers, expired cupcake mix – I sorted and filed and moved and tossed. I was on the last shelf when I yanked down a big, big box marked “ice cream social.” Huh? Two things: one, why do I have a huge box marked “ice cream social”? And two, I don’t even remember being the person who had time to appropriately label stuff in my pantry.

I opened the box, and inside was everything you need for the coolest kid party ever. There was a shake maker, snow-cone machine, cotton candy spinner and a cake pop baker. Long-handled spoons, ice cream bowls and a bright table cloth with ice cream cones printed on it. At the bottom of this box — the cherry on this surprise sundae — was a lime green pedestal that held six small bowls for ice cream toppings. Sitting in the middle of the spinning pedestal was a ceramic cupcake with a removable lid for hot fudge or caramel or strawberry sauce. It was summer and Pinterest and laughing children in one clever serving piece. It was darling.

I wanted to throw the darling cupcake as hard as I could against the wall.

Instead, I sat down next to the box called “ice cream social” and cried.

I remember this stuff. I bid on it at a silent auction years ago, back when ice cream socials and impromptu play dates and birthday parties had starring roles in my parenting plan. Back before I knew that my son’s meltdowns were not a phase and back when I thought he played by himself because he was shy. Back before I had any idea that I would not be a soccer mom but a special needs mom.

What I have here is a box full of plans for a kid I don’t have. Some days, like today, it makes me sad.

I was crying for my son, but I’ll admit I was also crying for me. Instead of six different ice cream toppings always on hand for my son’s friends, I have an endless supply of pens for his therapists. Instead of being the house that everyone comes to, we are the people that are never home. Instead of bike rides, we have speech therapy; instead of swim parties, we go to OT.

Do I begrudge this? Not ever. But is this what I planned? No. Every once in a while, not very often, but every once in a while, I give myself permission to grieve for the life I don’t have, to think about the mom I don’t get to be.

I wrapped up the cupcake and put it back in the box. One day. Maybe. In the meantime, the sweetest boy in the world was on his way home. As moms go, I think I’m doing OK. Ice cream socials are fun, but my son needs a mom with a backbone, some fight and a strong voice. I’ve got that.

But just so you know, I would have made an awesome soccer mom.

Sincerely,
Becca

This post originally appeared on Sincerely, Becca.

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Recently, a longtime friend reached out to me to let me know she was expecting a Sensory Processing Disorder diagnosis for her kiddo. She was feeling all of the things you feel when you are told your child is different, and she was wondering if I had any suggestions or helpful tips about how to begin their journey.

We chatted for a while, and it turned out she was already aware of several things that would be helpful for her child. (I wasn’t surprised; she’d always been a smart, tough go-getter.) So I put in my two cents, wished her luck and asked her to keep me posted.

The conversation stayed on my mind for the remainder of the day. I thought of the beginning of our journey. In my mind, I went over all the things we’d learned, doctors we’d seen, therapy we’d done, changes we’d made in our lives and lifestyles… and it was the first time I’d stepped away and looked at it from a distance, rather than just feeling it from the epicenter. It was the first time I’d realized just how far we have come.

I’m proud of us — not just of Lucy, who has done an enormous amount of work, but of our entire family. Each of us has had to sacrifice and grow and love each other better than we might have if we hadn’t been on this crazy ride together. It was one of those shifts in perspective that all of a sudden illuminates a reality you hadn’t considered before. It was a gift.

Then a few weeks ago I read an essay by the mother of a child with special needs. The essay described her irritation when people told her that, “God only gives special kids to special people.”  She knew those folks were saying it with only the best of intentions, but believes that kids with special needs can be born to anyone, and some of those people go on to do horrible things to their children. I enjoyed the essay and the ultimate message, but something bothered me about it, and I couldn’t put my finger on exactly what it was.  I thought it over for several days, and then I had another lightbulb moment.

Because I’d said something along the lines of, “God only gives special kids to special people” to my friend in our conversation when she’d reached out to me days before. Was I a jerk? I am the parent of a child with special needs; I should know these things. Am I bothering other parents when I say that? It’d never bothered me when someone said similar words — but why not?

I thought again of our beginning — when we were searching for answers to questions we didn’t even know how to ask, before we had our diagnoses and we knew things were off. I thought about after — getting our diagnoses and facing the reality that we had a lot of work ahead of us, with uncertain outcomes. So many questions. Not the least of which were the soul-wrenchers: “Why her?” “Why us?” I wanted to feel that there was some purpose to it all and that it wasn’t some random twist of fate — that maybe there was something special about me and her — and me and her together.

Now, I have to admit that while I consider myself a spiritual person, I will rarely, if ever, bring God into a conversation. I’m not one for the white beard and the throne and the meting out of judgment. And I run in a pretty secular crowd, so no one has ever said that exact thing to me before because that’s not the way we speak.  But I have said that it takes a special person to parent a special child. And I believe that. It gave me comfort when I was looking for answers years ago, and it gives me comfort now during the hard times.

I think communicating it that way conveys the good intention with better words. It’s just a little shift in what can be said, but it means something different. True, anyone can have a child with special needs but instead of “have,” which is passive, “parent” can be active. Not a noun, but a verb. A doing. And if someone does a horrible thing to a child, that is not “parenting.”  That is simply criminal.

Truly parenting a child with special needs absolutely requires a special person. Someone who has strength, patience, resilience, persistence and deep wells of love for the unique person whose care they’ve been given.

After talking to my friend, I realize that she’s exactly that kind of special. She’s an intelligent, fierce mama who will be the absolute best advocate for her child. After looking back at our long, long road, I realize I’m that kind of special, too. Our whole family is that kind of special, and there’s nothing passive about it. We choose it and act on it every day. It doesn’t mean we’re perfect or that we get it all right all the time, but it means we’re purposefully trying hard and doing well by our special needs kiddos. Thinking it over put me at peace with my words.

So if you’re like me, and you want to give some words of comfort, particularly to someone who is just starting on their journey, I think it’s OK to let them know you know it takes a special person to actively parent a special child, regardless of how that child came to them. God, genetics, adoption, whatever. Because it does take somebody special. I don’t think I’ll ever be convinced otherwise. And you know what? If you chose to read this today, I’m willing to bet you’re pretty special, too.

This post originally appeared on Mom in Uncharted Waters.

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Every year I like to post something for my family and friends, to share what I’m feeling inside as we raise our son with autism and our daughter, who was diagnosed with ADHD and severe OCD. The one thing that resonates each year is that I’m lucky to be on this road. It’s paved with so many stories and love from others. Here’s this year’s letter that I wrote to my younger self…

Dear Past Karen,

Greetings from age 48. I bet you’re sitting on the floor of the living room right now folding laundry. Am I right? I can see you now. Jake is playing cars in his room, and Julia is watching an Elmo video with you. I figured you have a few minutes before the next therapist arrives for Jake’s speech session. I know the autism diagnosis hit you hard last year. I’m writing today to tell you about how things turned out and to let you know that most, if not all, of your prayers have indeed been answered.

In just a few months, Jake will start school at a place called Variety Pre-School. He will be placed in a class with other children on the spectrum. I know you’re going to be super nervous about letting him go, but trust me, it will be the best thing that ever happens to him developmentally. He starts to speak in sentences after eight months. He’ll stay at Variety for kindergarten, which turns out to be the best decision you and Ernie make educationally because it gives Jake that extra little push he’ll need for Central Boulevard Elementary. That’s right, both of your kids will attend the same elementary school as you and Ernie did.

Jake starts CBS in first grade and blossoms. He develops an incredibly shiny personality and is crazy about school. He starts to play school in the basement den every day. Your mom helps by setting up a classroom at her house too! Thank God for Grandma and Grandpa. They’ve pulled you through your darkest days since autism knocked on your door. Before you know it, Jake will graduate from CBS and you will be wondering why you ever cried yourself to sleep every night for two years and sometimes refused to leave the house or answer the phone. You woke up one day and started to give back at Variety. You join the PTA and start taking on more and more projects that connect you to school.

By the time JFK Middle School comes along, you wonder how you ever survived without some of your friends and their families. You realize that autism is a blessing rather than a burden. I won’t lie; those days where you feel cold and lonely do return from time to time, but they no longer control you. You control them by remembering that Jake needs you and Ernie to be strong for him and his future.

Jake is now a sophomore at BHS and is the same age you were when you met Ernie. He’s a typical teen complete with worries about what his clothes and hair look like or who will talk to him at lunch. Does he still have rough days? Sure he does, but you’ve learned so much from the doctors you met throughout the years that you learn to get though these rough patches. Ready for this? Jake plays on a basketball team and is a Boy Scout. He volunteers at the District’s Summer Special Ed program as a counselor. The staff says the kids love him! This is the boy who never spoke a word until he was nearly 4 years old.

Julia has blossomed into a 13-year-old lady right before your eyes. True, she’s had her challenges, but she’s a treat. You love to shop with her and take long car trips so you can chat about every little thing. She and Jake will fight like cats and dogs, but they love each other more than you will ever know. Ernie? He’s a miracle on earth who literally picked you up and dragged you through each day. I seriously doubt you would have made it to where you are without him.

I’ll let you get back to the laundry. Elmo is almost over and you need to get Julia a snack before the speech teacher arrives. Just remember, life is good my friend. You’re blessed with so many gifts. Autism can never take them away from you.

Just thank autism for helping you to realize how special life really is.

Love,

Karen

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