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,


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.


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: 


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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.

I mustache you a question…but I’m shaving it for later. 
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.