It Goes By Fast

It Goes By Fast

 Let’s set the scene: I am in Kroger with my offspring, both of whom are behaving very well, but who have apparently recently started eating Pixie sticks by the pound because they are both SUPER EXCITED and firing off questions like firecrackers on America’s birthday: 

“Is that a bug?”

“How long do butterflies live?”

“Have you seen my magic wand?”

“Can we get a butterfly to live in our house?”

“Is THAT a bug?”

“DID YOU KNOW MY MAGIC WAND IS JUST A PENCIL?”

There was no bug. And I did know about the pencil, but I pretended not to because lying to little kids is totally acceptable. 

I passed another mom and her teenage daughter as I was answering these questions as fast as I could while also trying to read through a grocery list. The other mom and I made eye contact and we both smiled. 

“It goes by fast, doesn’t it?” she said, giving my kids a wave as she walked away. 

We made it through the list of insect questions and were now deep into a series of queries over which animal would eat you the fastest, a dinosaur or a lion. Our answers were inconclusive, by the way. If you see either, just accept your fate. As Joshua began listing out the reasons a dinosaur would have a hard time eating a person (the word “omnivore” was thrown out, which is 100% Daniel’s doing), I passed a store manager. He smiled at my kids, too, and offered his thoughts on our wildlife dilemma. He was #TeamLion.

As he said goodbye, he winked at us and said, “Enjoy it – it goes by fast, Mom!”

Both this man and the mom from before were kind, sweet people (based on the thirty seconds I spent with each; they didn’t seem like serial killers or anything). They were not scolding me, or judging me – they were just living a life 10 or 20 years ahead, and wanted to pass on the wisdom they had learned. They, like so many parents, knew that the time with their kids was fleeting, and while these young ages could be exhausting, all things come to an end eventually, so I should savor the moments that I could. 

I say all that to let you know that I am not mad at either of these people. I totally get where they are coming from. But when you have a kid with delays, those comments can really catch you off-guard. And, sometimes, they can hurt. 

We are in somewhat of a unique position in our family: My son is chronologically and cognitively five years old. Socially and emotionally, I would put at him at a little younger, maybe three-and-a-half or four in some areas. Physically, his skills average out to be those of a child who isn’t quite two years old. None of this is bad news; what matters most to us is that he continues to progress, which has always been the case. 

But as I came home from the store and walked inside, those comments stuck with me. They stuck with me as I pureed food for my five-year-old, who needs to be fed like a baby several times a day to maintain his weight. They stuck with me as I filled out a form for financial assistance with swim lessons through our local special needs adaptive swimming group. They stuck with me as I remembered that I needed to buy diapers on our next trip, because potty training has been a difficult skill for my son to learn. 

For some of us, it doesn’t go by fast. Have the years seemed to fly by? Do I double-check the calendar daily in disbelief that another school year is ending when I’m sure it just started? Yes and yes. The days and the months and years do go by fast. But these early days, the days of diapers and baby food and dressing and parenting a toddler – they have remained with me, and with my son, and with our family. 

I’ve said before that I feel like we’re stuck in space-toddler continuum – Joshua does AMAZING work, and he is learning a ton. But because he takes longer to learn new skills, and because his little body is not always ready to take on these challenges at the typical age, it’s like he’s moving in a different time zone, one where days are months and months are years. A place where he grows so fast in some areas and doesn’t change at all in others.

It’s hard to put into words that match the picture in my head. I guess you could imagine a clock, where “typical time” is on the minute hand and “Josh time” is on the hour hand. He moves, certainly; things change and develop and grow. But by the time he has made it from one number to the next, the rest of the world has made a full circle, and he is left to start again.

Do I wish things were different? No – Joshua is who he is on purpose, and to wish he didn’t have these struggles would be to wish him away entirely. He is a wonderful, smart, enthusiastic kid who is already everything I want him to be. But that doesn’t mean small, well-meaning comments don’t hit me in a spot that can cause a lot of pain. 

Sometimes, it doesn’t go by fast. Not for everyone. And please know that this isn’t a call to action or a plea for you to stop telling people that time passes quickly. Many people have said that to me before, and many people will say it in the future. It’s almost always meant in love and as a friendly reminder from a mom who just wants to share what her decades of parenting have taught her. I can’t ask you to stop saying it, and I wouldn’t want to.  No one can live in a bubble where they never hear difficult things.

I suppose if there is anything I want you to take from this, it is to remember that those age-old bits of wisdom aren’t always true. 

Sometimes, it doesn’t go by fast. 

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Marcus

Marcus

Hello, adoring fans <–Josh wrote that part. I would never be so vain.

I hope you find yourself well this fine, frickin’ freezing day. Are you well? Text me about it.

As you probably know, Joshua started the Marcus Autism Center’s feeding program this week. A few of you have asked questions about why he goes and what he does there. As always, I live to serve each and every one of you, so here is the Official Marcus Autism Center FAQ By Kristen And Not The Actual Center – OMACFAQBKANTAC for short.

Why do we go? 

Josh struggles with eating in a major way. He’s very underweight and has a hard time gaining any weight. May we all be so lucky, amirite? I kid, I kid; it’s fairly terrible. So this feeding program basically teaches kids how to eat better. Every kid’s experience is different, but the goal for every child who attends is to improve their eating skills in the way they need it most.

What do they do there? 

Josh’s main goal is weight gain, so they are working to increase both the variety and volume of table foods he will eat. Every patient has a schedule – it starts with 40 minutes for breakfast, then a 40 minute break; 40 minutes for snack/oral motor therapy, then another 40 minute break; 40 minutes for lunch, then a long two-hour break; 40 minutes for “dinner,” which is what they call it but it happens at 2:30 for us.

During the 40 minute sessions, Josh tries small bites of each of the four foods they have. They try to incorporate foods he likes alongside foods he resists, i.e., all fruits and vegetables ever. They give him a spoon with a tiny bite of whatever he is eating (it’s diced up into super tiny portions), and they let him feed himself. After he does that, he gets several seconds to chew and swallow, and then several more seconds before the next food is presented. They use a fairly rigid routine and verbal cues to prompt him to eat; in between bites, the therapists get silly with him and will sing songs or play little games at the table. He rotates through each of the types of food several times in one session, and they record how long it takes him, if he chews and swallows it all, if it makes him gag, and a whole bunch of other little squares that they fill in. They must have a huge spreadsheet budget at this place.

When he gets a break, we head to the main playroom. He likes the toys in there and he made a friend today! They also have a playground (we tried that yesterday and instantly froze to death; I’m actually writing this from heaven) and a family lounge where we can eat. He gets his own nap room, and today we spent some time in there so he could have a little rest.

What do you do the whole time, Beautiful and Amazing Kristen? 

Oh, stop. (But go on.) I can observe Josh during his sessions, so I have been watching those. I sit behind a two-way mirror so he can’t see me, but I can see and hear him. During the breaks, I just follow Joshua around until he stops to play. Much like every other day of my life.

Don’t you have a second kid? 

I do! Jenna is being a trooper and will either be with me, my mom, my very sweet neighbor, or a fire station of my choosing. She is allowed to come, but I don’t want her to have to spend all day down there too often, plus she has school twice a week, so we’ve worked out a little schedule for my little girl. The schedule has significantly fewer sparkles than the girl.

How long will this last? 

This is an eight-week program, and we are there Monday – Friday, 8:45 – 3:15. In Atlanta time, this means 7:00-4:00, but the day goes by a little faster since it’s broken up into blocks. I don’t think we run into any holidays during our time there but I’m pretty sure they have therapy basically every day but Christmas.

 

Why does it matter if he eats and/or gains weight? Plenty of kids are small for their age. 

Josh has cerebral palsy, and his muscle tone is all wacky. He needs to gain weight and strength and muscle tone to keep up with the demands his body makes for physical activities. A walk around the block is a much bigger effort for Joshua than the average bear. So he needs to get stronger, and this is the way to help him do that.

Cool? Cool. See my secretary with questions.

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I mustache you a question…but I’m shaving it for later. 
On Your Fourth Birthday

On Your Fourth Birthday

Dear Joshua,

Happy birthday, big boy! Four is a legit big boy age. I know you’re about 78 on the inside, but four seems pretty old, too!

This year has been huge for you, dude. You have accomplished so much. You can walk on your tippy toes now, and you are rocking the scissor crafts! Bumpy slides, climbing stairs, and riding the therapy peanut have been no match for you as you master them all!

Of course, I think we can all agree that one of the biggest skills you’ve developed is your speech. Joshua, I love you. And you are the chattiest person I know. You ask me what we’re doing, where we’re going, who we’ll see when we get there, and if I remember how much fun we had the last time we were there. I might not remember, but you do. You remember everything. You call a doorbell a “dingbell” and you have a little lisp, so when you say things like “Thanksgiving,” it sounds more like “Skanksgiving.” You’ll probably grow up thinking Thanksgiving is a holiday to celebrate giggling since I laugh every time you say it.

I love to hear the stories you make up. They usually involve Marshall from Paw Patrol and Batman or Captain America, always fighting bad guys. And they always win. You like to tell me which Bible stories you like the best, and even though you still insist Jesus will return to Earth on a rocket ship, I love to hear what you’ve learned about the Bible.

Josh, I just love to see your personality develop. You like to be silly but you do not stand for shenanigans. You like The Rules and you make sure everyone is aware of them. We all know that you’re pretty much raising Jenna at this point, and I do appreciate it. You remember every detail of every conversation we have, and you love to answer questions!

There is a possibility that you’re a tad stubborn, too. In fact, I think you get more stubborn every year. But you know, Joshua, for every moment I am frustrated with you digging your heels in, there is also a moment of admiration for you and the way you fight. You’ve been a fighter from literally the first seconds of your life. You had to be. And while we can butt heads sometimes, I would never change that about you. It’s made you who you are. It’s what kept you with us four years ago.

I know some things are more of a struggle for you. I’m sorry, because I know it isn’t fair. But you don’t let anything get you down. You don’t worry about what other people think of you. You just go out there and do your thing and if someone wants to follow, they can. And they do. Your smile is ridiculously contagious. Sometimes I know you’re up to no good and then you look over and grin at me, and I have to smile back.

Remember when you broke your arm? We didn’t even know it was broken for two weeks. Because you’re half human, half superhero. And you rocked that neon green cast.

Joshua, I want you to know how much I love you. And how much I admire you. You have accomplished more in your four years than some grown people ever will. You’ve had to work harder for every little victory, and you’ve had to struggle over the small things. Part of me is sad about that. But part of me know that it has shaped you into an incredible person who never stops trying. Your work ethic is better than mine, kid. And you have compassion for so many people in different situations. You’ve learned about different disabilities and struggles, and it’s made your heart even bigger. You love to love people.

Happy, happy, happy, happy birthday to my big little man, who always has a smile and a reminder about using our indoor voices. I hope this next year is just as great.

Love always,

Mommy

The Curious Case of the Invisible Need

The Curious Case of the Invisible Need

“But he doesn’t look special needs!”

“Well, my son does that, too.”

“Everyone has trouble with something, you know?”

Like sands through the hourglass, these are the words of our lives.

If you have a child with a special need, you probably know those words, too. You probably hear them every time you explain why little Johnny won’t go in the sandbox. Well-meaning friends, family members, even doctors say these words to you, not out of malice, but usually in an attempt to help.

You hear them because your child’s disability is invisible. Maybe not all of it – maybe only sometimes – but it’s there, invisible to the naked eye.

When I tell people my son has special needs, they look surprised. I think they must be looking for a tell-tale sign, though I don’t know what that would be. Maybe if he had tentacles? That would actually be pretty cool. But I digress.

The thing about a disability that isn’t super obvious is that parents often find themselves having to defend the reality of their situation. You don’t want to overstate things and make your situation sound dire, but you also don’t want to pretend the need doesn’t exist. You feel guilty for using phrases like “special needs” or “disability” when your child is thriving and running around at school. You feel guilty for not using those phrases when you see your child struggling and hiding at school. It’s a lot of tricky waters to navigate.

A common response, at least in my circles, is for people to sort of write off the special need. My son has trouble with noises, but “Aren’t all kids sensitive to loud noises?” My son struggles with balance and strength, but then someone reminds me that “no one ever goes to college without learning [insert skill].” My son gets overstimulated quickly and easily, and misbehaves as a result. But “All three-year-olds misbehave – it’s just a phase,” I hear.

The impression I get is that this kind of response comes from one of two places: 1) The person feels the need to reassure me; they want me to know that my kid will be okay and his needs are just as typical as the average child’s. 2) The person feels the need to make it into a competition – a Pain Olympics, if you will, that consists of comparing children to determine who has it worse. (That type of response baffles me more than the first one, but I’ll add it to the list of things I’ll never understand, like calculus and people who exercise first thing in the morning.) The over-arching theme seems to be that Joshua’s special needs are actually manifestations of the needs of every typical child, using the evidence that he looks, speaks, and acts like a typical child.

But I have a secret for you that will blow your mind. Are you ready? Take a swig of your Coke, splash some cold water on your face, and really prepare yourself.

You can have a special need and also have a lot of typical traits.

That’s right. It’s true. Having special needs doesn’t define your entire personality, anymore than being short has defined my personality (but the struggle is real). You can struggle with loud noises and still enjoy a movie. You can despise the feeling of sand on your fingertips and still brave a beach trip. You can throw a tantrum like every other toddler and still need extra help to calm down. Special needs, like all needs, are fluid. They change. You might even say they don’t make sense, because they are unique…special.

A special need is exactly what it sounds like: A unique trait that needs extra care. It might not look the same every day. It might not even be the same every day. It might come in a limp, or a sensory disorder; a feeding tube, or a special vest; a hearing impairment, or a compulsion to count trains. You might recognize it; you might not. That’s what makes it so special.

Please know that I don’t harbor any ill will towards anyone over their response to Josh’s needs. I really do understand that you don’t understand. And I don’t expect you to. I have zero clue on what it’s like to struggle with many issues that others deal with. And I can’t always relate when you tell me what you’re struggling with.

The good news is that you don’t have to relate. You don’t have to get it. You don’t have to experience it. You don’t have to give me advice. You don’t have to compare our children. You just have to trust me.

Trust me when I tell you that my son is not just being a grumpy toddler; that he is actually struggling with sensory overload and needs some time alone before he melts down. Trust me when I tell you that even though he put that bite in his mouth, his eating issues are far from over. Trust me when I tell you that I am exhausted from having to help him with every little thing that is often taken for granted. Trust me when I tell you that my son really does need help with these steps, and no amount of “tough love” will cure his low tone. Trust me when I tell you that while yesterday he was fine, today he cannot stand the slightest touch on his skin. Trust me when I say that I am not trying to compete with you or your child’s needs, or pretend like things are worse than they are. Trust me when I tell you that my son is like your son in so many wonderful ways, and different in so many others. Trust me when I tell you that while I am far from a perfect parent, I know my child and I know his needs. Trust me when I tell you that the skill he just accomplished really is that big of a deal, worthy of cake and ice cream and a thousand parties in celebration. Trust me, and smile at me when I drag my screaming child from the store, and forgive me when I decline playdates because we’re having a bad day, and pray for me when I tell you I need it, and then let it go.

You don’t have to understand. You don’t have to relate. You just have to believe me. That’s how you see an invisible need.