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.

3bf64-holdingjosh

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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.

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.