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.

j-and-j

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. 

It’s Okay – No, Really, It Is.

It’s Okay – No, Really, It Is.

Joshua “Are You Sure You’re Doing That Right?” Eleveld started school this week! He loves it, just like last year. And I love hearing him tell me the highlights of his day (spoiler: it’s usually the playground).

For those of you not in The Know, Josh is part of the Gwinnett County Special Education Pre-K program. The goal is to prepare him for big boy school (even though I’m pretty sure he’s already in his forties, mentally speaking) and make sure that he has the tools to succeed in a typical classroom down the line.

Which leads me to yesterday. 2:00, elementary school lobby, sitting awkwardly because I am not sure if I am supposed to be sitting, but there is a chair here, so why not?  Another woman sits next to me and tells me she’s waiting for her son. I say I’m doing the same, and after we chat for a minute, she asks why I’m not in the car rider lane like most of the parents picking up their kids. I tell her my son is in the Pre-K class, and I come in to get him, like most of the rest of the parents in his class.

She makes a face. Not a disgusted or angry face. It was a face I have internally termed the “Poor Little Buddy” face. It’s the face people make when they want to convey that they are sorry for you and your situation.

“Oh,” she says, the Poor Little Buddy Face alive and well, “he’s special needs, huh?”

I smile and affirm her suspicions. Sometimes I take the time to explain more about Joshua, but as I had just met this woman moments before and as I was positive Josh would be in the lobby any second, I just say yes.

She continues speaking.

“Oh, well, that’s okay! We need those special needs guys, you know?”

I do know, actually.

I think my response was to smile again and agree. I don’t totally remember because, to be honest, she caught me by surprise. It’s okay that some kids have special needs? Does that really need to be spoken?

Apparently, it does. Not because it’s a lovely thing to hear – it’s not – but because it is indicative of a much larger problem: The idea that having special needs is actually not okay.

Look, the unknown is scary. I get that. Kids or adults with special needs can be an unknown quantity if you’re not part of that world (and sometimes if you are), and I respect that. But if there is one thing I have learned about all types of children, it’s this:

Children are listening.

They can hear you. They can read your body language. They understand a smile. And they know when you’re afraid. They see your Poor Little Buddy face and they make the connection that their special need or the special need of their sibling requires pity. But pity is the last thing my son needs.

Read these next words carefully: I am not angry at this woman in the school lobby. I am not offended or upset with her. She seemed like a lovely mom who loved her kids. When Josh did arrive in the lobby, she greeted him and spoke with him. He liked her. She liked him. I am not out to demonize anyone.

I am out to educate everyone. My goal here is to bring an awareness to the fact that we are afraid of special needs. You can pretend that isn’t true, but, frankly, you would be wrong. And we need to change the conversation around it, and the way we teach our children to react to it.

Special needs are okay. Just like brown hair is okay, and being tall is okay, and being afraid of spiders is okay (that one is REALLY okay). There is a special need in all of us, and we all want to be accepted. Not pitied. Not told that we’re accepted in spite of our shortcomings, or in spite of our need. Accepted for the way we are.

Do you want to know the secret to special needs kids? Treat them like every other kid. Recognize a need is there, find out how you can fill it, and encourage them and educate them and smile at them. My daughter has no “official” special needs, but I spend part of every single day pretending to be a puppy with her, because that’s what she’s into. That is her special need. So I try to meet it.

These kids (and adults) need you. They need you to be their advocate, to be a positive influence on them, to reassure them that everything will be okay. Find the balance between “special” and “typical” – and leave your pity out of it, pretty please.

So it is okay that my son has some extra special needs. It is okay, and I know that. I’ve always known it, because it’s an essential part of who he is. And I know you don’t always know what to say. That’s okay, too. I’m not perfect, either. None of us is – and that’s kind of the point.

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Dear Preemie Mom: It’s Me Again

Dear Preemie Mom: It’s Me Again

Dear Preemie Mom:

You may remember me; I wrote to you a while ago.  I talked to you about all the different challenges you might have faced and the different emotions you might have experienced. I wanted you to know that you’re not alone. And I have some other things I want you to know, too.

I want you to know that it’s okay to be afraid, even long after your baby has come home from the NICU, happy and healthy.  You might be afraid that at every doctor’s appointment you will receive bad news. You might be afraid that even though the doctors said your baby could come home, something will go terribly wrong. You have dealt with a big change, one you could not have predicted or planned for. It’s okay to be unsure about the next steps you should take. It’s okay to wonder why this happened to you.

I want you to know that you should have no regrets about anything you said or did during your time in the NICU. Not because you should do everything perfectly the first time around or not be sorry for a mistake, but because you have to forgive yourself. You snapped at the nurse that day, and she has forgiven you. You walked out in the middle of a meeting regarding your child’s future, and those people understand. I want you to know that it’s okay to forgive yourself after you have made it right. It’s okay that you said no more visitors that day because you just couldn’t talk to another person. It’s okay that you said the wrong thing to another NICU parent. I want you to know that you did your best. That’s all any of us can do. You did your best, and there might have been some mistakes and some good calls, and now it’s okay to stop being sorry.

I want you to know that the feeling you have of being overwhelmed is normal. Physical therapy, occupational therapy, discharge papers, pulmonologists, follow-ups – it’s too much for one person to deal with by herself. It’s okay that you feel like you can’t handle it. It’s okay to ask someone to help you handle it. It doesn’t make you weak, or unwilling to get the job done, or incompetent. You are strong. You are doing everything you can. It’s okay that it seems like everything you have to do will never get done.

I want you to know that it’s okay to feel like you are not up to the challenge of raising a kid with atypical needs. It’s all right that you feel like this was a mistake, that you are unqualified to be a mother to a little baby who needs so many things. It doesn’t mean you don’t love your baby, or that you won’t be a great mother. You will be. You are. But it’s hard to have a kid who is different. It’s hard to adjust when plans change suddenly and with no chance to prepare. It’s really hard. But you can do it. I know you might not believe me today, but you can do it.

Mostly, I want you to know that everything will be okay. It may have been three months since you brought your baby home, or three days, or three hours. Or three years. And still you are surrounded with the chaos that became your life in an instant, when you went from knowing the future to having no idea where to even turn for help. You still check on your baby in the middle of the night to make sure he is breathing. You go out of your way to avoid the hospital where your baby was born and spent the first months of his life. You feel frustrated and sad and then guilty that you feel that way, even though your baby has been home for a long time. Even though he is no longer a baby, but a toddler, or a big boy. Your child might not look like a preemie anymore – no one would know if you didn’t tell them. Or maybe your child struggles in some areas that make it obvious that he needs extra help.

No matter what, it’s going to be okay. It’s going to be okay. You think the memories of your days in the NICU, of watching your baby fight for life, of listening to a doctor prepare for the worst will haunt you forever. But they won’t. You think you will never overcome the fear that the NICU instilled in you when it comes to your baby. But you will. You think you’re never going to be able to move past that this, that this is your life forever now. But it isn’t. It will take time. It will take healing. But it will get better.

Everything will be okay.

Sincerely,

Your Fellow Preemie Mom