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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Three Years Of You

Three Years Of You

Dear, sweet Jenna Paige:

Happy third birthday! Or, in your words, happy day of your number turning three! It’s so exciting that you’re an official big girl now!

As I thought about what I wanted to write for this post, I realized the issue wasn’t what to include about you. It was about what I could possibly leave out of your vivacious, big personality. So this might be a long one :)

You don’t do anything halfway. You are committed to your joy, tears, and everything in between. You love to love people, and you love to let them know how they have crossed you. And you have to do everything yourself. I mean, everything. Every. thing. Honestly, that used to frustrate me. But as I watch you become more and more determined to finish a task by yourself, I am so proud of your independence and courage. You will try anything once, and you almost always finish it, too.

Your independence is fierce. You do not back down from an idea or a challenge. You don’t care what people think or what they say. You are always ready to do your own thing and take no prisoners as you do it. This amazing attitude and strong will are going to help you do great things, little girl.

I love the way you crack yourself up with your own jokes. I love the way you play with your princesses, putting them in your little pink castle and giving them all different voices and stories. I love the way you are almost always dressed up as something else: a princess – or, as you say, a Disney “pincess” – Doc McStuffins, or sometimes a creation you thought of on your own. You are always ready to head off on an adventure in your high heel Little Mermaid shoes and your clip-on earrings. Everything about you glitters pretty much everywhere you go.

It’s been so fun to listen to you learn to talk in long sentences and tell me about your day! You love to give me lists of things you’ve seen or done, and you love to tell me all the facts you’ve learned about a new subject. You chatter away about your favorite dolls and your princess bed and your sparkle shoes and your teachers and your friends and church and everything under the sun. I love to hear your little voice. I love that you still haven’t mastered some of your Rs and Ls. I love it when I ask you a question, and you look to your left and your right, put your hands in the air, and say, “I don’t know!”

I love the way you still cuddle with me, and how you’re always willing to give me a kiss or a hug. I love how you are always determined to sleep in my bed, on my pillow, with my blanket. I love how devoted you are to your own special blanket, appropriately named Purple Blanket. I love how you lovingly choose a baby (or two or twelve) to put in bed with you at night, and kiss it good night, and tell it you will take care of it because you’re the mommy.

You are so unique, Jenna. In the same thirty seconds I can see you in a princess dress, twirling around, and also eating dirt. You aren’t afraid of bugs or any of the things that make Mommy scream. You ask us to dance and shake our hands and tell us “Nice to meet you!” You say your Ns as Ms so you tell me that you “meed help” or ask to watch “Finding Memo.” You have the littlest lisps on your Ss and two dimples that I can never resist. You love to choose your outfits, paint your nails, paint MY nails, and decorate your room with drawings (and the occasional stamp).

Jenna, I just love you so much. In one way I am sad that you’re growing up, because I still remember my last little baby and how small you used to be. But I also love each new phase of your tiny little life, and to see you grow and learn every day. Even though you recently announced that you will “never EVER grow,” I know you will. And it will be amazing.

You will grow up to be an incredible, strong, independent, fashion-savvy person. But for now, I can’t wait to see what year three brings us.

I love you, I love you, I love you, my Jenna girl, my Jenna Bear, my Neener, my Jen, my baby girl, my little love, my sweet, precious baby. Happy third birthday!

Love always,

Mommy

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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