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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On Your Fifth Birthday

On Your Fifth Birthday

Happy fifth birthday, buddy! You are already five years old… it’s hard to believe. Which is funny, because when you’re a parent, you’ll see that some days drag so slowly you think they’ll never end, and some days pass so fast you can’t remember they happened. And, somehow, enough days passed for you to be five!

Every year with you is more and more fun, and this year has been no exception. You learned a lot of new words this year – you like to tell me you’re “SO disappointed,” how “delighted” you are, and when you feel “very frustrated.” You still haven’t mastered your R and L sounds, so it’s ridiculously adorable to hear you say big words in such a little voice. Sometimes you try to correct Jenna and teach her a new word – it rarely (maybe never) works, but I like to hear you try.

You’ve spent probably 75% of this year dressed as someone else – Captain America, a dinosaur, Spiderman, Marshall, and sometimes a costume of your own creation. You love to dress up and play pretend. And you do not break character for anything. You make those British guards look like party animals. Sometimes, when you’re a puppy, it’s really tricky, because you’ll only answer to your puppy name, which I don’t know, and which you won’t tell me because “puppies don’t talk.” Except to say that one sentence.

Superheroes have been one of your favorite things this year. Every morning you hopefully ask me if it’s raining so you can wear your Batman raincoat. When you wear it, you have me put the “hoodie” up so you can run around singing, “Nah, nah, nah, nahhhhh, BATMANNNNNNNN!” over and over again.

This year was a tough one for you, medically speaking. You did bites at the Marcus Center, which was hard, but you did it. You gained inches and pounds and ate your weight in pureed food. I was (and am) really proud of the way you handled yourself during those sessions. We had some rough moments, which I may or may not find funny in five more years, but you gave it your all. And you’re still giving it your all each time we do the bites.

We also discovered that you were dealing with some other issues – namely, the issue where your blood sugar would plummet when you were sick! That was a fun surprise. We are still unraveling parts of that mystery, but you held up like a champ through tests, blood draws, and – the worst part – no Paw Patrol movies. It wasn’t fun, but you rarely complained. You are tough stuff, my friend.

We won’t talk about the two broken legs. Back to back. In summer.

I love watching you make new friends. You’ve become part of a little group at school, all of you kids who love building blocks and playing pretend. You could be friends with anyone. You could be friends with a sheet of paper. But I love to see you form these special bonds as you grow.

You’re so big now. So. big. What you lack in weight you make up for in literally everything else. You feel big feelings, you imagine big ideas, and you have a big smile. You love being big, and I know you’re holding strong to your goal of growing higher than the ceiling so we have to get you a giant house.

You’re also silly in big ways. You love to “trick” people, either by sneaking up on them or telling them something outrageous in such a serious tone that they actually start to believe you. You love mischief, and while it is often your sister who gets caught doing the actual mischief, I have a feeling she is only following orders from a certain five-year-old mastermind. I’m on to you, dude.

The other remarkable thing about this year is that you started to notice some of the differences between you and your friends and classmates – and you didn’t care. When you asked me why your school bus is so small, I answered you as best I could, by telling you everyone is assigned a bus that fits them perfectly, and held my breath while I waited for your answer. In your typical cheerful manner, you just said, “Oh!” and then went back to being Batman for a while. You don’t care about your differences. And they’ve made you more compassionate for others who are different, too.

Speaking of the bus… your morning bus driver recently told me that you sing songs for the entire ride. Paw Patrol, Batman, Robocar Poli, Little Einsteins – you sing it all at the top of your lungs, giving everyone a brief but exciting concert five days a week. On the way home, you chatter away, telling the driver and the aide about your day, about what you saw, who you saw, who you didn’t see, things you would like to see, something you think you saw but can’t remember, etc., etc., etc. X infinity. You love to talk, and if you don’t know the other person well, it makes no difference to you.

I could go on for pages and pages. I could talk about how funny you are. I could talk about how much I love to listen to you play. I could tell you how hard it is not to laugh when you study your reflection in the mirror until your “haircut” is perfect. I could tell you that even though I thought I was going to Italy, I wound up in Holland, and it’s a better trip than I could have ever planned.

What I will tell you is that I love you. And I’m proud of you. And you are FIVE today!

Love you always,

Mommy

The Secret Life of The Special Needs Mom

The Secret Life of The Special Needs Mom

I am raising a child who is not my own.

He is my flesh and blood. I am his mother. He is my son. But for nearly all of his life, we have deferred to experts to tell us what to do with him. One of them says take him to this therapy. Obediently, we go. Another one says, no, what you really need is this program. So we turn around. A third one says, what you really need is medication. And off we go to explore that path.

Ultimately, every decision is up to us. And we don’t go blindly down any new road without consideration. But from the very first day I became a parent, my child’s life depended on the expertise of other people. I couldn’t help him. No one could show me how, not then. And so began his life, being raised by smart people with long, useful degrees.

Maybe that’s how every parent feels, even parents with typical children. I wouldn’t know. My atypical child is my firstborn, and I have only ever known this life.

My son gets a cough, and I take him to the doctor, knowing we will either go home or to the ER, depending what the doctors find. Depending on what they decide we will do. I am grateful to live in an area with so many experts available. I am grateful because my son is still not mine to raise, even at four years old. I don’t know what the right call is. Sometimes I can guess the right one. But it’s up to the professionals.

My son doesn’t eat well enough to keep him healthy, and I take him to the doctor. They tell us how to fix it. They tell us what we will do next. I nod my head and take notes and begin living this new phase of our life.

My son doesn’t walk the way he is supposed to, and I take him to the doctor. This is a problem that will have to be given to a new expert. They tell us to go to therapy. We are lucky to have these therapists in our lives. The therapists give us directions, and we follow them, finding ways to add exercises and build skills. Our days are busy, but they told us we need to do it all.

My son doesn’t go to many playdates. We should go to more, but we’re out of time. The experts told us we had to get so much done. There aren’t enough hours in the day. But we need their help for my son to thrive. We should go to more playdates. He would like more playdates. Maybe if I tried harder, he could. I should ask the doctors about that.

This is the secret life of the special needs mom. It isn’t a bad life. It isn’t a life to be pitied. It is a life filled with waiting – waiting for the next steps, the next lab results, the next expert to show us how to do better. We are glad for the help. We know we can’t do it without them. So we wait. We know we have to be patient. Waiting is the only way to learn where we will be sent next.

But it’s a strange thing, to raise a child who is not yours. Who is yours, but only between appointments. It makes us feel sad, and happy, and lonely, and loved. It’s a delicate balance. We must always be careful to schedule, but be flexible; be accommodating, but firm; juggle, but take time for ourselves. We must remember that all of this will be worth it, in the end, for our child to be the very best version of himself. We must know that perspective is key – we are not the only ones who suffer. We must learn to ask for help, and learn to do things on our own. We just have to try our best.

At least, that’s what the experts say.

I am raising a child who is not my own.

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Good Job Taking That Bite!

Good Job Taking That Bite!

I imagine there are two groups of people who use the word “bite” on a regular basis: 1) Vampires. 2) My family. 

We’re not vampires, if you’re wondering. (Or are we?) But bites are as essential to our daily lives as breathing these days. You might remember that Josh recently finished a feeding program at the Marcus Autism Center – the main purpose was to make him fatter, taller, and more inclined to eat food. We learned a ton about Josh and the way he chews, swallows, and smiles after misbehaving during this eight-week program at Marcus. 

But, as the youths say, the party didn’t stop there. After graduating the program, Josh could only continue to succeed and gain weight if we kept up the program at home. I think most people know that we do this. And since sharing is caring, I thought you might be interested to know what exactly that means for our daily lives. If you’re not interested, here’s a picture of a cat with a mustache: 

Cat

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Special Needs Adjacent

Special Needs Adjacent

Here’s to you, sibling(s) of a child with special needs.

Here’s to you and all the different waiting rooms you’ve sat in for hours, waiting for the doctor to finish checking on your brother.

Here’s to the way you defend your sister when you think someone isn’t treating her well because of her needs.

Here’s to you and the way you learn how to help your brother calm down when he’s struggling.

Here’s to your patience as your mom and dad explain that we can’t go to this place or do this thing because your sister isn’t able to deal with the noise or activity or stairs.

Here’s to every time you tried to comfort your mom and dad when they seemed sad after a visit to the doctor.

Here’s to you giving up time with Mommy and Daddy so they can work on exercises with your brother.

Here’s to the way you learn to do things for yourself, because while you are no less loved, you know your parents need to help your sister.

Here’s to you giving up soccer practice so your mom can drive your brother to therapy on time.

Here’s to you as you encourage your brother while he struggles to learn a new skill.

Here’s to you and the way you have cultivated patience and understanding for all types of people with all types of abilities.

Here’s to you, sibling(s) of a special needs kid. You had to learn early on that sometimes life isn’t fair, and that sometimes you have to pull more than your share of the weight. But, with any luck, you also learned that you are a vital part of your family. Not just because of the way you love your sibling, but because of the way your parents love you. Thank you for all that you do.

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