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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The Day(s) My Marriage Ended

The Day(s) My Marriage Ended

I married my husband, Daniel, on a warm spring day in 2011. Actually, since we were married March 19th, it was still technically winter. But a Georgia winter, meaning it was 65 degrees and sunny.

It was a beautiful day. My father-in-law performed the ceremony, and that day still goes down as one of the most fun of my life. We danced to all the wedding cliches, had enough candy to feed a medium-sized village, and even broke out into a flash mob at one point. It was perfect.

And then real life began. Ours, like so many young couples’, began with a joy all newlyweds have: The joy of lying. Not big lies. Not like you forgot to tell them you’re wanted in five states. But little, easy lies, like, “This dinner is delicious!” or “I definitely like this painting.” I used to sneak out of bed in the morning and brush my teeth before Daniel woke up so he would think my morning breath was naturally minty-fresh. You’re welcome for that free tip, humanity. We wanted to make each other happy, so we were willing to overlook towels on the floor or accidentally-destroyed projects (I’m still really sorry, Daniel). We made the extra effort because it was worth it.

We had been married for a year-and-a-half when we found out we were expecting our first baby. We were thrilled! As you probably know, our firstborn arrived a bit less traditionally than the average bear.

And that’s when our marriage ended the first time.

Gone were the days where our biggest worries were over whether to order pizza or go out for dinner instead. I didn’t get enough sleep to even think about waking up early to brush my teeth and sneak back into bed. Towels on the floor became just one more nuisance on a never-ending list I kept tabs on in my head.

Joshua needed our constant attention. After four months in the NICU, he came home to therapies, specialists, oxygen tubes, apnea monitors, and more. As time went on, the needs changed, but the stress of having a special-needs child didn’t.

You want to know one of the truths about having a kid with special needs? It kills your marriage. Kills it. We were both still there, still married, but the marriage we had known was gone forever. In its place was something almost unrecognizable. And it was getting worse every day.

I’ve said before that having a child like Josh changed me. In so many ways, it changed me for the better. It made me more compassionate, and more understanding of the struggles of others, and opened my eyes to an entirely new world.

In some ways, though, the changes weren’t as great. These were the changes that were the hardest to resist. I was so angry at God for allowing Joshua to have so many issues. I was angry at myself for not realizing something was wrong sooner in my pregnancy. I was angry at everyone around me. And while throughout the day, I made an effort to at least smile at other people, by the time I got home from the hospital or new specialist or therapy session, I decided I had given all I could. I couldn’t possibly deal with one more thing. And I took it out on Daniel.

Every forgotten task, every misunderstood conversation, every dish I washed alone – I kept track of it all. I knew how many times I had done the laundry and how many times Daniel hadn’t. Sure, he was working all day, but I was busy with the baby. It wasn’t fair. That’s what I kept repeating to myself. It wasn’t fair. I was a stay-at-home mom, but not by choice. I had never asked for this. I wasn’t even sure I wanted it for a long time. But then it arrived and was so much harder than I expected. And I knew I wasn’t up to the challenge. And not being up to the challenge made me defensive. And being defensive made me resentful. And being resentful made me bitter. And all of that culminated in my marriage slowly dissolving into two bickering parents who didn’t know how to stop arguing.

No one is ever 100% innocent in these kinds of things. But I will be honest and tell you that a lot of this was on me. Daniel tried his best to help me, but I didn’t want his help. And then I got angry at him for not helping me. And then he tried to help me again, and obviously that meant he thought I wasn’t doing a good enough job, and then I was angry again. And then he didn’t help, and how dare he not help me? It was a vicious cycle.

We went on like this for a few years. We had our daughter, Jenna, just 15 months after Josh was born. Daniel worked full-time, and I worked part-time for a while, eventually moving to a full-time position where I worked from home. We had two kids under the age of two, hectic jobs, financial struggles, and so many appointments to go to. Life was busy. Too busy. Jenna was a fussy newborn. Josh didn’t walk until Jenna was almost a year old. There was no rest, no time for our marriage anymore. Even if we had wanted to work on it, there was simply no time.

Same people. Different marriage.

And then one day, Daniel and I had a big argument. (I’m not trying to air our dirty laundry or anything, and I asked Daniel if he was okay with me writing this. Just want to put full disclosure out there.) It was bad. I was so angry and so tired. Josh had started an intense feeding therapy program. Daniel was dealing with some (thankfully resolved!) health issues. It was stressful. And we argued, and then I shouted that I wanted a divorce.

It wasn’t true. I didn’t want a divorce. I was so tired, so angry and bitter, and I just decided to say it, to goad my husband into arguing with me. But he didn’t argue. Instead, we sat in silence for a while. I knew I should apologize. But I wouldn’t. I didn’t.

I thought that I was already so broken that nothing could touch me anymore. But I was wrong. The look on Daniel’s face when I said those words to him made me feel like I had shattered all over again, like the day Josh was born, and all the days after when we heard more bad news. And so I made a choice.

I decided to try to let the little things go.

It was hard at first, and is still a struggle for me, if I’m being perfectly honest. But my goal was to stop looking for ways to blame Daniel, and instead look at the ways he loved me and showed me his love every day. I decided to think about his intent – did he not take the garbage out just to make my day harder? Probably not. Probably he had just come home from a really hard day at work and it slipped his mind while he was helping me with the dishes or feeding the kids. Probably I could just remind him, or even do it myself. And then we wouldn’t have to fight. Things didn’t have to turn into an argument every time one of us made a little mistake.

My other goal was to get to back to reading my Bible every day. That isn’t meant to sound self-righteous; I just knew I needed to hear what God had to say instead of screaming my own words at Him. As we say in this house, it was no longer my turn.

So I started working on my goals. And I’ve messed up so many times. But it’s been getting easier and easier.

And that’s how my marriage ended the second time.

Same people. Different marriage.

Slowly but surely, the arguments grew to be less frequent. We sought ways to work together instead of ways to blame each other for the stresses in our life. Our other situations didn’t change. Josh still had a lot of needs and was a lot of work. We still had two very little kids and very little time for ourselves and our marriage. Those things wouldn’t change. But we could. We did.

When I first decided to write about this, I was hesitant. I didn’t want to paint Daniel in a bad light, because he is a wonderful, godly man, who married a slightly crazy, super short woman. I didn’t want people to judge us. I didn’t want to come across as having so many struggles.

But I don’t think we’re alone in these struggles. Even if you don’t have a kid with special needs, your marriage has likely hit a rough patch. If it hasn’t, please submit yourself for testing at the nearest health facility, because you might be a robot.

And if you do have a kid with special needs, and your marriage is struggling, and you’re not sure how you will possibly make it through one more day of therapy, and leg braces, and helmets, and practicing stairs, and giving choices, and being a constant cheerleader and advocate for your child so they never have to feel different – it’s going to be okay. Things might not change. But you can.

Same people. Three different marriages. And we would never change a day.

D and K

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

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.