Being a Special Needs Parent is Exhausting

I know what you’re thinking: Yeah, kids are exhausting. Parenting is hard. Welcome to the club.

What I really mean is, my kids are exhausting for me, a person with mental illness that is not yet controlled. That’s more accurate but not a very catchy title. Let’s just take a look at what parenting is like sometimes when mama or papa has a brain that won’t stop. Cuz let me tell ya, my brain, it’s a doozy.

First, for the biggest and most obvious example: babies. Everyone wants to look at babies. Touch the babies, talk to the babies, make the babies laugh, and then they ask the parent questions like, “how old are they?” “why are they not wearing shoes?” “do you have any more?” “can I hold them?” “can I move in and turn this anxiety attack into full on panic mode?”

Okay that last one doesn’t happen, but still. It is overwhelming. My doctor, upon first meeting me, diagnosed me with “a variety of anxiety disorders,” which kinda makes it sound like a fun pack of candy, except it’s just different ways my brain likes to screw with me. Anxiety disorder, panic disorder, social anxiety, agoraphobia, etcetera. Going out in public and dealing with strangers is hard enough for me, but I used to be able to awkward my way through things with as little social interaction as possible.

But then I had kids, and my children demand attention. My youngest, who is currently 16 or 17 months, something like that, is in the cutest stage imaginable. In public he will give people flirty eyes, he will wave and say hi, blow kisses, do whatever he can to ensure that everyone in the vicinity will come bow to his awesome adorableness. Honestly I can’t blame them. I made some cute kids. (Yes husband, you helped too blah blah blah.) But the whole time I’m just itching to get away and get home where no one will talk to me. Until the big kids get home.

Dun, Dun, DUNNNNNNNN.

Second example: when they come home from school, or *terrified gasp* are home for winter break! Or even worse, SUMMER BREAK. I’ve got to admit, I never understood why parents celebrated back to school time so damn hard, until I had kids myself who went to school. This shit is hard! But for me, I hate even saying it, but I feel like it might be a bit harder. One of my conditions is PMDD(premenstrual dysphoric disorder) and a major symptom is sensitivity to sound. To SOUND. I’m a mom of special needs kids with a sensitivity to sound. So at that time of the month I cannot bear to hear my own children talk to me. The constant singing, the fighting, the gazillion questions, and no kid, gazillion isn’t a real number. Do you guys know what comes after a googol? Or after a decillion? Too many questions!

pexels-photo-3435318 — Sorry kid, can’t hear ya.

Speaking of questions, and whatever else I was talking about, have I mentioned that my daughter and I both have ADHD? First of all, I struggle with so many of the normal things that badass parents conquer every day. Things like getting the kids to school on time, remembering what time to pick them up, making phone calls to therapists and doctors and the worst of all, playdates. My kids school is pretty awesome, and the people are so sweet so I’ve never been made to feel bad, but let’s just say I’m the one parent they will call on a half day to remind me that it’s a half day. Because I have forgotten and left my kids at school one too many times. Oof.

Oh, there’s so so so many more examples I could go through, but honestly, I’m tired. You know, because three kids, and a brain that won’t stop. The point is, I’ve come to look at things a bit differently over the years. I often say that I am a special needs parent. Which originally meant I am a mother to children with special needs. But who are we kidding here? I’m the one with special needs.

I need my kids to be quiet. Not possible.

I need them to pay attention. Because I can’t.

I need them to not attract so much damn attention. But seriously kid, we all know you’re cute.

I have so many needs in order to feel like I am a good mother, but let’s face it, these things aren’t going to happen. So instead I rely on what I can. Lots of alarm clocks, prayer, meds, alcohol, more meds, the occasional mental breakdown. Parenting is hard. So hard. But parenting special needs kids when you’ve got your own special needs? Damn exhausting.

pexels-photo-2866022

Oh, and for any judgy Janes I’ll say it: It’s still worth it.

Halloween and special needs kids

I’ve heard so many grievances about kids and Halloween for years now and honestly I just don’t understand the big deal. If they’re a kid and they are trick or treating, just give them something yummy, a smile, and move on with your life. Same goes with teenagers because come on guys, they could be out making some terrible life choices, but instead they are holding onto their childhood a bit longer and participating in something innocent. Don’t complain.

But my major issue surrounding adults and Halloween is that everyone tends to forget about the special needs kids. Halloween can be hard for them. The scary decorations, the bright jack o’ lanterns, greetings from strangers and the excitement of all the other kids running around. Even just at home it can be stressful.

I remember a few years ago, my husband and I didn’t feel like our son was ready to go trick or treating and he agreed. We still bought candy, gave him some, and dutifully answered the door when kids came knocking. But it was too much. After a while our son was visibly agitated and started melting down every time someone knocked on the door. He was looking outside and seeing all the scary costumes and with each knock he was getting more and more overwhelmed. So I wrote a note, telling kids to take a piece of candy and have a Happy Halloween, and I left it outside with the bowl of goodies. No more knocks, no more anxiety. (Believe me I was having just as hard of a time as he was. Anxiety disorder + people knocking on your door nonstop = bad news.)

The next year, he still didn’t seem ready, so I was prepared. I printed out a cute little poem about how our little pumpkin was autistic and got scared of the loud noises of Halloween. I asked for no one to ring our doorbell, and for them to enjoy some candy, and again have a Happy Halloween. And this time, it was better. No one knocked. No one rang the bell, and when people say the sign, they quieted down a bit. And this time, my son looked out the window and watched the trick or treaters walking down the street with curiosity mixed in with the anxiety.

Last year, when he was 6 years old, was our first year trick or treating. We put out our bowl of candy and set off on our own adventure and honestly it went well. We got a few people asking what my son was dressed up as (he wasn’t because he didn’t feel comfortable in a costume), which he got upset about, but our daughter, 4 at the time, was quick to step in and distract people with her sweet charm and adorable Sheriff Callie costume. So all in all, it was a good night. My buddy was polite, and most of the time said thank you without being reminded. He ran to each door with excitement and didn’t complain about what he got. I was so damn proud.

But I know in a different area it could have gone different. I’ve heard stories of adults demanding to know why the child wasn’t wearing a costume, or getting angry when the kid wouldn’t say the right words, or wouldn’t talk at all. Kids literally being bullied by adults for not behaving the way they’d expect a “normal” kid to behave. And that is unacceptable.

These kids might not be comfortable saying trick or treat. They might not be in costume. Costumes are itchy and different and different is hard. They might not be able to look you in the eye. They might forget or be too scared or shy to say thank you. They may get upset that the candy you give them is something they don’t like. But guys… This is not their fault. It’s not about you in any way and it’s not personal. They’re just kids, trying to enjoy an innocent tradition, just like other kids their age.

So remember, the kid who won’t look you in the eye, or say trick or treat; the kid not in costume, or the one having a meltdown instead of going door to door, they’re all so special and they are trying so hard. And they deserve a good time just like everyone else. So give them an extra smile, don’t put any pressure, and if they aren’t in costume, don’t mention it. Just wish them a Happy Halloween. It might not seem like much to you, but I guarantee you, their parents will notice and it will mean the world to them.

Why I willingly gave up bus privileges

As of a few days ago, I am officially a school drop off line mom. And I’m good with it. I really am. Here’s why.

Last year, my son was in first grade, loving school and learning enough to make his mama feel a bit dumb. But, as with most kids with special needs, things weren’t that easy. He had a lot of behavior issues in and out of school and they weren’t improving much. Especially on the bus. The school he goes to is 15 minutes away from our house, so the school was adamant that he take the bus. Partly for some sense of routine, partly because this is an amazing school and they want to make things easy on the parents if they can.

But things weren’t great. The bus driver was nice, the bus aide was a total sweetheart, but they were no match for my son. He would throw things, get up and try to move seats or cause trouble, scream and hit the aide if he got upset. So the school timidly approached me about getting my son a harness. If you don’t know what I’m talking about, imagine the kind of harness a dog might use, except instead of a leash on the back, the back would be strapped into a special seat belt attachment on the bus, so my son wouldn’t be able to get up during the ride.

33992373_10216552339984311_6240292184906530816_n

I think many parents would say no, and I could tell that they were expecting me to be upset. But if he needed this to stay safe on the bus, and keep everyone else safe, then I wasn’t going to complain. So we got the harness.

It didn’t help with his behavior though. Last year was a struggle, and he was written up multiple times, although I know they hated doing it. And this year? We tried to start off school with no harness, to see if he could handle it. He lasted three days before we all agreed to put it back on. But his frustration with the bus was becoming worse and I was starting to see that his behaviors were not just out of nowhere. I started seeing patterns, and reasons why he would get upset. If the bus changed, if it looked a bit different, if the driver or the aide was out and someone new was there, if another kid wasn’t on the bus like usual; there were a million variables that seem small to us, that bothered my son in a profound way. And they were not anyone’s fault, or in anyone’s power to fix.

The only solution I could think of was to ditch the bus completely. I might not be the most organized person, but I’m Mom. I don’t get sick days, so I would be the one there to drive him every day. In the same van, in his same booster seat, with the same kind of music, and his sister next to him. And, better yet, no harness.

So yeah, it takes a full hour out of my day to drop the kids off and pick them up later, but if it helps my kid, I’m good with that. I really, really am. This is why I became a stay at home mom; so when my kids needed me, I would always be there. And we are already seeing an improvement in his mood and behavior in and out of school, so I know I made the right decision. In the end, all that matters to me is my kids and how they feel. And he’s already feeling much better.

69987069_10220354299590925_3473174734689009664_n

Back to School and the Anxious Parent

Kids test our patience, don’t they? By the time my son was 3 years old, there was talk of school starting soon and although part of me was sad about it, the other part rejoiced. I’d only have one kid at home for a little while EVERY DAY! It felt like I had an upcoming vacation. (To be clear, my son started early preschool because of learning delays.)

When the time came though, it was nothing I expected. The teachers were great, school staff was great, everyone was great. But that little part of my brain that likes to remind me of all the what-if’s and worst case scenarios was suddenly loud and full of ammo to drive me crazy.

I was anxious about being outside on time for the bus.
Then on my son traveling in a strange vehicle without me.
Him being away for HOURS without me.
Packing a lunch that wouldn’t make the teachers think I was a bad mom.
His behavior at school.
How people would treat him and his differences.
How he would treat others.
Being home on time for drop off.
Not looking completely disheveled so no one would judge me.
Being judged for being a young mom.
Going on errands and seeing school buses driving around! Is it a half day and I didn’t know!?
This list could go onnnnnnnnnnn

bus-school-school-bus-yellow-159658

Now, I’m a bit older and a bit more chill. I’ve got two in school now and a baby at home and I no longer worry about some of those things. Like how I look when the bus comes to pick the kids up, or whether people judge me for being a young mom. Besides, children have aged me, I don’t look like a teenager anymore!

But… The rest is still hard. I constantly worry about every single detail about my babies being in school. That’s totally normal to think like that, and I know most parents do. But most parents don’t have nightmares of the school bus driving off a cliff. Or have frequent intrusive thoughts about their babies somehow getting badly injured or even killed while they are away from them. And these things stay with us, taking hold in our brains and staying there, refusing to leave. We can’t shake this stuff away and it can often lead to anxiety attacks, panic attacks, even anger, directed at the very loved ones we worry about. I’m not just worried. I get sick. Like there’s a rock sitting in my stomach that doesn’t go away until my children are home and in my arms again. (And for those who are itching to suggest homeschooling, that’s not a possibility for everyone. Although I would love to, I am not cut out for it and I applaud those who are.)

These days, in the United States, I think its becoming common that parents are struggling with anxiety. How could you not? I’m not going to get political here, but I’ve never met a parent who wasn’t terrified of the possibility of a school shooting.

pexels-photo-131773

Having children is terrifying.

Sending your children away from you is terrifying.

Having anxiety is terrifying.

So, parents who deal with it all every day, I see you. I know your struggle and your pain and I see how strong you are to keep your fear from your kids. You are amazing and I am so sorry you deal with this level of anxiety with me. But we will keep doing what’s best for our kids, even if it’s hell on us. Because we are parents… That’s what we do.

A different approach to autism awareness month

It’s autism awareness month! It seems as if this month, this one thing that we are trying to spread awareness for, falls on the ears of those who are already listening. Which is great, because parents of autistic kids need that connection. We need to know we aren’t alone and that others mess up just like we do. And autistic adults need this connection so much. I’m starting to learn how much.

download

The bridge that I’d like to build is an obvious one, but maybe a path that’s not tread often enough. This month, I’m not focusing on other autism parents. I’m focusing on the adults. I’m reading their stuff, how this month actually makes them feel. I’m paying attention to the symbol that so many of them reject and why and taking that to heart so I don’t associate with it myself. I’m reading their blogs and following on Twitter and I’d like to find someone to talk to on what they think are good and bad ways to handle therapy in a child with autism. I’ve got questions and I’m willing to listen.

Ladies and gentlemen on the spectrum! I see you, I hear you, I love and support you and I will be paying close attention. I want to know the best ways to raise my son and I don’t wanna do it by following orders from the doctor alone. I want to be gently guided by those who have gone through it and grown up awesome. I’m here, and I’m listening. And hopefully I can convince other parents to listen too.

Parents, we’ve got a wealth of knowledge available across Facebook, Tumblr, Reddit, Twitter, probably other social media sites I’m not cool enough to know about. It’s time to learn from the experts.

I’m Sorry, but I Am Not Thankful for My Sons Autism

When my little boy turned a year and a half, he changed. He was this perfect little thing, so cute and loving, silly and playful. He was reaching all his milestones just a bit later than other kids, but who cared? He was my precious baby, it didn’t matter. Until suddenly, he wasn’t late reaching his milestones, he was stalled. His motor skills stopped progressing, his attention span slipped and all of a sudden all those words that we so lovingly taught him were gone. Just gone.

img_20160709_231450-2

You can’t imagine the worry when your baby suddenly can’t call you mama anymore. Why he’s suddenly not looking you in the eye and why you need to repeat everything a thousand times until he finally focuses and hears you. You can’t imagine the confusion of trying to get him to say a word that he had learned months ago, only to realize that he doesn’t know it anymore. You can’t imagine it, unless you’ve lived it.

It took a long time to figure out what was going on. Our pediatrician at the time was absolutely useless and brushed away all our concerns. We were young and naïve and assumed that if the doctor wasn’t worried, maybe we didn’t have to be. That’s what we told each other, although inside we both knew we were scared.

When we finally reached beyond the doctor to seek help, things started changing. My little boy got into Early Intervention and they determined he needed speech therapy and occupational therapy to develop his fine and gross motor skills. Our world turned into a web of words we’d never heard before with speech delays, IEPs and therapists.

And still, we knew it wasn’t enough. There was still something missing that we didn’t understand, and that word, autism, had been floating around in our heads for a while. We didn’t want to believe it though. If he only had a speech delay, he’d grow out of it. But the other thing… There’s no growing out of that. We were scared for his future. But you know what? Trying to avoid the confirmation of what we knew in our hearts to be true was not helping him, or us, or anyone. My husband finally convinced me to get him to a different doctor, and we found the answer we knew was there.

Autism. Sensory Processing Disorder. Possible Obsessive Compulsive Disorder. At the time it was nothing but a relief to hear someone say it out loud. Knowing what is going on is important in advocating for my son, and understanding him.

But in all my time online, reaching out and trying to connect with other people raising autistic kids, I kept seeing one thing. “I’m thankful that my kid has autism because…” It is a good sentiment, it really is. And I totally get it. I don’t wish I never had my son, and if I could go back in time I wouldn’t do anything differently (besides getting a diagnosis sooner) but personally, I can’t agree. I’m just gonna say it.

I’m not thankful for my son having autism.

I’m not thankful for sensory processing disorder. I’m not thankful for OCD. I’m not thankful for the fact that a simple noise can send my son into a meltdown. I’m not thankful that he can’t get comfortable in a shirt with a tag on it. I’m not thankful that he can’t read or watch something unless it’s perfect from the very beginning. I’m not thankful that his sensory issues are making potty training impossible. I’m not thankful for his struggles, for his fears or for the heartbreak he doesn’t even know to feel yet when kids say he’s weird and run away from him.

I’m thankful for my son.

1469288368784

He is a beautiful, crazy smart, silly boy with a huge heart that makes his mommy melt. He takes care of his sister, he gives me the best hugs, and when he’s really happy, his eyes light up brighter than anything else in the world. And when I think of all the things he goes through, all I think of is how his meltdowns take away his smile. They take away the light in his eyes and fill his brain with fog. They change him from loving brother to a distressed kid who will push his sister down to get away from her. They make it impossible to talk to him, to reason with him, to love on him. When he’s struggling, there’s no amount of being “thankful” that will help him. There’s no amount of being “thankful” that will help me either.

My little buddy will be six years old in a couple months, and I know we’ve got a long way to go. I know that as he grows up, he will learn how to handle the stresses in his life in a healthier way. I know he will change some things he does, mimicking his behavior in certain situations to fit in better. I know that, underneath all the struggle, one day he will be okay. I just know that he will grow up to be an amazing man that my husband and I will be nothing but proud of. So maybe one day I will be able to say with total sincerity that I’m thankful for his autism. But right now, seeing how hard every single day is for him, it’s hard to appreciate anything that hurts him so much. Maybe one day I’ll be able to look past the bad, and see the good things it has done in his life. Because I know there will be plenty.

But at this age, with this much struggle, saying so would be a lie.

The Sensory Hangover

Too many people, too much noise, too many colors, too hot, too windy, feet hurt, weird smells, aaaggghhh! Kind of annoying to even read that, huh?

Recently, my husband and I braved our own social anxiety to take our kids to the most crowded, overwhelming Easter Egg hunt ever. There were people everywhere, parents shoving kids aside to grab a dozen eggs, and children in every direction getting separated from their families. It was hell. And the poor kids had nothing to show for it because we couldn’t push past the throng of overbearing helicopter moms for my own kids to grab a damn egg. This was strike one.

After the failure of an egg hunt, we decided to make the most of it and stay where we were, which was a popular local boardwalk. Lots of rides, lots of memories. Our kids had never been, so we decided it was time. And let me tell you, my expectations were put to shame.

If you know me IRL or have followed me before, you’ll know that my son has sensory processing disorder. Long explanation short, it’s basically where all of the senses that we usually handle normally, they get all jumbled up in my kids head. His brain just looks at all this information like I look at algebra. Not a pretty picture. So, knowing how sensitive my buddy can be, I honestly didn’t expect much. But I underestimated him.

kids-park-photo1

My boy got on every ride he saw, laughed his face off and didn’t fuss one bit when he had to wait in lines. He ate lunch in a strange place, outside, surrounded by strangers, weird smells and weird, loud noises. He was polite, happy and falling in love with the excitement of the boardwalk. And it broke my heart.

Because it was a glimpse of what he could be if we’d never heard the words “autism” and “sensory processing disorder” coming from a doctors mouth. I started imagining how life would be if this was his normal. And I started getting optimistic that this was proof that he’s changed and grown up so much. It was just so nice to see him so happy instead of struggling through every second of the day.

But when we woke up the next day, all hell broke loose. He was angry and lashing out from the second he woke up to the second he finally passed out that night. There were meltdowns galore, tears from everyone and a lot of apologies. I tried to keep my cool because I knew what was going on. All of those overwhelming things he had braved through the day before were all just fuel being added to a bonfire. Every strange noise, every time he almost tripped on the uneven sidewalk, every time a kid rushed past him and bumped him, it all fueled him up, hidden deep inside where he had been storing it all day. The next day, through no fault of his own, it exploded.

Angry-child

This is what I call the sensory hangover. His raging fire burned bright the day after our fun, into the next day, then the next, and the next, etc, etc… As I’m typing this, we are about two weeks out from that day and we still haven’t gotten him back to that great, grown up boy who was doing so well. I’ve found myself explaining his behavior so many times I’m running out of words. It doesn’t matter how many times I say it isn’t his fault. All strangers do is stare, shake their heads, and think I’m being a lazy parent. As if I don’t feel like the worst already.

But here’s what I’ve come to realize… When a child goes through all of this, and then wakes up the next day to this agonizing hangover, the kid isn’t the only one suffering. Meltdowns are hard. They drain the life out of the child suffering and every caregiver they come across. It’s heartbreaking to see a little kid have such a hard time. It’s hard enough seeing a strangers kid freaking out in public, but imagine that being your normal at home. After dealing with the meltdowns over and over, day after day, it wears me down until I’m the one lashing out. I’m snapping at my husband, yelling at the kids, and flinching over the slightest touch. It took me until today to realize that I was now the one in sensory overload. Anxiety does not mesh well with angry kids. And hurting children don’t thrive with an overwhelmed mom.

Mom-Meltdown

The thing is, try as I might, this is just what happens when we do something big. The meltdowns are inevitable, his and mine. I have a lot to learn about handling my sons struggles, and I have a long way to go in forgiving myself when I can’t handle it all either. So I might have to avoid a playdate if it comes after something big. I might try to keep the kids in when everyone tells me to take them out. And I may seem like I’m making excuses for bad behavior once in a while. But just know that I (along with so many other special needs parents) are just doing what we need to do to survive the aftermath of a good day. Here’s to hoping that the good days increase and the hangovers get shorter. The sensory kind, and the wine induced kind. Cheers!

When a simple facebook post restored my faith in people

Recently my local MOPS group had an outing to Dearborn Market. There was a hay ride, corn maze, hay maze, stacks to climb and the kids got to pick their own pumpkins. There was a little party afterwards in one of the greenhouses, with juice and cookies for the kids. It was a good time and my kids had a blast! Whenever we can get through an outing like that with no meltdowns it’s a miracle! That day we had nothing but smiling faces. And with my new medication, I was happily watching my kids play with no anxiety. No freaking out if I couldn’t see them for a few seconds, no worrying they’d fall and get hurt. It was amazing. Happy kids, happy mommy.

Until we got back to the car. My son got in, and instead of sitting in his seat, he started looking around with a worried look. “Mommy, where’s Momo?” I think I had one of those terrified, deadpan stares that you see in movies. His favorite monkey blanket, his calming item and favorite buddy in the world was missing. In the biggest maze of a place you could imagine. Staying calm, I brought the kids inside and had someone write down my name and number with a description of his blankie. I hoped for the best and explained to my son that Momo might take a few days to come home.

My boy is getting big now, so he doesn’t have his buddy on him constantly anymore, and he was fine at first. But then life got tough like it does for him, and meltdowns ensued. He cried and cried for Momo and my heart broke. I knew I had to do something. So I decided to do the modern thing, go on Facebook and put up a post asking for help.

12670592_10208710034651579_8503330544327427462_n

Hey everyone! This is gonna seem silly to some people but I’m desperate. I took my kids to Dearborn Market the other day for the whole Hay ride, corn field maze, pumpkin picking thing. Kids had a blast but my son lost his lovey that he’s had since he was born. If he was a ‘regular’ kid with a regular toy, I’d let it go. But my big guy has sensory processing disorder and life is very tough for him sometimes. His little blanket (Momo) is a huge help when he’s having a rough day. It’s his calming item and we are going crazy without it. Dearborn has our info and has promised to call if it’s found, but no luck so far. If anyone happened to see it, please get in touch! My boy is very sad without his Momo.

What came next was not what I expected. People quickly took notice and started offering prayers that we’d find it. People started sharing the post and begging others to help. And I quickly lost count of the amount of employees who took their own time to search the grounds themselves. I was overwhelmed with a sense of compassion and caring from my community on something that I didn’t think many would even notice. My post ended up getting shared over 1300 times by the time I gave up the search.

But in the meantime, my son was hurting. He would cry for his Momo during every meltdown and refused every offer of comfort. His Daddy even came home one day with a similar looking blanket and it was immediately rejected. Sadly, Momo was never found. Instead, we replaced it with the help of more concerned citizens. A dozen of whom had sent me links to find what I was looking for.

During his first meltdown with his new Momo, he had the saddest face and told me, “He’s not the same! I MISS him!” My heart was breaking as I explained that Momo couldn’t come home, so he sent his friend. Eventually, my boy calmed down, stuck his thumb in his mouth and started snuggling the new Momo. And he’s embraced it ever since.

15170785_10211380598414004_9121045020253023869_n

I’ll never forget how a community banned together to help a little boy they didn’t even know. The amazing support I recieved from complete strangers. The feeling of compassion and love in such a hard time from a world that too often doesn’t understand. My little guy went through a very hard time, but I can easily say his Mama was able to keep her head, with so many people behind us, cheering us on and offering help.

And it made me think, for once, maybe us special needs parents aren’t as alone as we thought.

Thanksgiving Dinner with Sensory Processing Disorder

thanksgiving-background

Thanksgiving. A time with family and friends, good food, good times and good memories. I think it’s ingrained into the brain of a mom to imagine a picture perfect Thanksgiving dinner. A beautiful table setup with all the food coming out hot, on time and cooked to perfection. The family sitting nicely together, getting along and praising the kids for eating such a wide variety of foods.

But then there’s reality. While we all struggle trying to make the holidays as awesome as we can, it’s a bit much to handle when you’ve got an unwelcome guest. In my family, its name is Sensory Processing Disorder.

Sensory processing disorder is a condition where the brain has trouble receiving and responding to information that comes in through the senses. There are triggers everywhere that I can’t even begin to comprehend. And since my son had a speech delay, he communicated solely through meltdowns for a long time.

So imagine Thanksgiving. Being in someone elses home is a trigger. So is the noise of conversation. The weird smells of foods he never eats. Strange rooms, a different color carpet, a pet that he’s never encountered, family he doesn’t see often, I could go on and on. Instead of the joy we used to experience, holidays started feeling like strenuous obligations instead of happy occasions.

2e9e99e12d87fe441b8033b7bb7cbf8c

In years past, we had no clue what we were dealing with. We were as confused as anyone as to why he acted the way he did. We didn’t know how to deal with it, and it showed. Things were tough. I wasn’t. Not anymore. Now that we can put a name to my sons behavior, things are going to change. Now we know there’s a reason he acts the way he does, even if we don’t understand it. Now we can show up for holidays armed with distractions, foods that he will eat, and a bit more grace for his meltdowns. Maybe even a bit more grace for ourselves.

So to our families…

You may find us hiding in the kitchen with a glass of wine, hiding in the bathroom, or roaming the house looking for our boy. We may run off mid-sentence to prevent trouble, or cut you off to yell at him to stop touching something. We will not both be able to sit down and actually eat, and some food may end up on the floor. Ears may be pierced with screams and you might even get kicked if you happen to be standing near him when he throws himself on the ground. By the end of the night, both of us will look even more tired and frustrated than the kids. But it’s okay. Because that means we survived another family holiday. Eventually it will get easier, and holidays will be less hectic. But in the meantime, thank you for having us. Thank you for inviting us over and over again, no matter how many times we’ve had to leave early or run around like maniacs. Thank you for not offering advice when we just needed peace. Thank you for not judging. Thank you for loving our boy even when he’s difficult to handle. Because he loves you all too, and despite how he acts, he’s been very excited to see you. And despite how tired we look, we are always happy we came.

You can also find this story on theMighty.