Controlling Christmas Chaos - Autism Parenting Style

We've learned some things by now. This isn't a gift giving guide, nor is it a Bible for controlling behaviors, or anything along these lines. Rather, I thought I would share some of my limited wisdom on what has helped control the chaos (or not) during Christmastime.

pin me

Don't expect your child to be as thrilled about Christmas as you were as a kid- at first. It took us roughly five or six years for Morgan to "get" Christmas (i.e. toys!) and four to sit near Santa. We found that driving around, looking at lights, figuring out what Morgan truly loved about the season and then doing that over and over (repetition) helped. We also read one specific book each night during the season. Repetition is our friend here.

I might add, it took us a long time and this zealously decorating mom couldn't figure out why he wanted to hide or break half my Christmas stuff. Turns out, it freaked him out. Oh, and he hated the smell of cinnamon. Glad he likes it now.

I have friends whose kids are older and still not into Santa, the elves, or any of this Christmas hoopla. Adjust your settings accordingly.

Which brings me to another thing, perhaps to file away for next year... decorate slowly, if you have to. You're placing a tree in your home- you have a child who might not think this is acceptable because trees go outdoors. So, when the child undecorates said tree or wants to explore it, climb it, perhaps topple it and drag it outside, don't be surprised. Same goes for any other greenery. Go slow. Involve your kiddo in as much of the planning as he/she wants to be involved in. Don't spring a fully decorated house on him.

Things will end badly. Trust me.

A lot of cute Christmas crafts involve painting hands and feet. Aren't they adorable?! Not according to my son, who once ran screaming to the shower while holding one of the loaded paint brushes when I tried to get him to make a reindeer out of his hand and foot prints with brown and black paint. While I was balancing a baby on my hip. You know what brown and black paint look like, tracked across laminate and then cream colored carpet? Poop and dried blood.

Take into consideration that what you interpret to be cute, your child might equate to sensory Hell. Or creepy.

Ah, Christmas baking... so lovely, so traditional, so... smelly and sticky. Combine sensory with feeding issues and you, once again, have hell. Let your child play in the dough- if possible, but keep a window open or exhaust fan going. Otherwise, you might have the glorious experience or your kid echoing your "Well, shit!" for days after when you catch him throwing away your snickerdoodle cookie dough.

Holiday family gatherings are a level of Dante's Hell he forgot to write about, for both parents and autistic child. Just skip those or tell people to piss off if you have one of "those families." I have zero patience for "well meaning" advice on spankings, how the public education system is babysitting my child, or questions on when my kid is going to outgrow Thomas the Tank Engine. Better yet, having my second cousin twice removed tell me all about this autism cure she read about on the internet involving bleach enemas. However, bonus: big perk for family gatherings- using that sensory break! It works for you, too! But it's called a bathroom break, with a wineglass firmly in hand. Stay as long as you need, as long as your partner or someone you trust with your kid is keeping a watchful eye.

If you do go, make sure to set time limits- for everyone. If you're spending the night there... put the kids to bed and drink heavily, if possible. Don't take selfies and title them "home for the horrordays." Bonus if your family "gets" it all, is terrific, and drinks with you by the fire. Put them in the selfies.

On a serious note, don't forget about your NT kids. We try our hardest to make sure Bay gets to live it up during the holidays, too. This year, he's asked for specific things to do. Morgan wanted to try them because his brother wanted to do them. It was a success. Siblings rock, make sure they know that. Sometimes we have a habit of paying so much extra attention to our special needs child, that our other children can get swallowed up in the background noise. If you can, take only your NT kid shopping with you. Bay loves doing this and loves buying for his brother, even though it's train stuff and he hates every stick of train stuff. However, he's getting time to himself with a parent, usually a small treat, and feels important to be picking out his own purchases. We do small "dates" like this throughout the year, too.

Don't expect your autistic child to be as excited over his "big" gift(s) as you thought he would be. Just because he's not  having one be happy flappy fest, doesn't mean he's not happy. Likely as not, he's overwhelmed and trying to hold his crap together what with the other eight things that are being pushed at him. Don't make this about you or about him not enjoying something. Unless he says he hates it, or sets it on fire, assume he loves it.

I know it negates returning the item, but put the batteries in the whatever before you wrap it and give it to your child. A NT kid gets impatient waiting on batteries, okay? An overstimulated autistic kid waiting on batteries? Yeah... let's just not go down this road. And, if you're me, you're buying trains or something very specific. You're not returning a single effing thing you've tracked down on Amazon and Ebay. Don't kid yourself, darlin.

Most of all, reset any and all expectations of the holidays with your kids you had before you knew about autism. You will still have an amazing holiday experience, I promise. You just have to look at things from different angles, make several adjustments, and perhaps buy the same gift six years (or more) in a row. Christmas is about giving and family. It's also about the kids. Keep that in mind, always.



I hope that some of this helps you. What things have you found that have worked over the years?

A Letter to Morgan's NT Friends

To my son's school friends,

Please don't ever change.

You, my dears, are the epitome of acceptance, kindness, compassion, and beyond.

You treat Morgan as if he is just like you. A kid. Because he is.

You seek to help him when he's over stimulated, sad, or when he wants to learn a new game, like four square. I hear that you even give him "second chances" for that game, though the other kids aren't allowed those.

If you're his work partner, you help him with the subject you're working on. I love hearing about that. Morgan tells me who helps him out in class and he always ends those discussions with, "he's/she's my friend and a very useful engine!" That's high praise, as you know.

You protect him from ridicule when I cannot. You make it abundantly clear that he isn't an object to be made fun of, but a friend to be loved.

When he stims or scripts, you don't look at him oddly. You don't judge him. You just accept and move on. But thanks for letting me know he scripts Family Guy at school.

Every time I walk down your halls, you run up to me for hugs and excitedly tell me if Morgan is having a great day. If his day isn't so great, you tell me how you're helping him or how the teacher(s) helped.

You don't shy away from his hugs, compliments, arm squeezes or funny sayings. This makes him comfortable around you. Him being comfortable has allowed him to really come out of his shell this year.

I love coming to eat lunch with all of you. That you ask respectful questions about Morgan and autism, and are genuinely interested, warms my heart. I love that you want to know why Morgan does things a certain way, scripts, stims, bounces, and is obsessed with Thomas. I love it even more that, when I explain it to you, I see seven or more heads bobbing as if to say, "this makes perfect sense."

You genuinely care about him, that's evident.

When "J" told me, "I think Morgan's brain is the coolest ever. You know, the way he can memorize stuff? He's the best at remembering spelling words and lines from movies," all I could think was "God bless you, kiddo. You get it."

When I saw him overstimulated last week after the performance, it worried me. That is, until I saw a group of you girls hugging his shoulders, talking in low voices to him, and running your hands through his hair. Morgan purred like a cat and thanked you. It was something I would have done and you girls have obviously seen his para or me calming him down in school and wanted to help your friend.

You girls spoil him rotten. I'm always finding little notes or treats from y'all in his backpack. Instead of thinking he's odd for dishing out compliments to you all of the time, you all say, "Aw! Thank you, Morgan!" and then tell me how polite and sweet he is.

I don't worry about sending Morgan to school every day like I used to. I don't worry about him getting bullied. He has you kids. You are part of his school team - the best part. While Morgan loves his grown up team, who are teaching him, you kids are the ones who are teaching him how to be a carefree kid and do typical kid things. I can't buy that kind of therapy.

Do you know how rare you kids really are? How many of us parents wish for kids like you for kids like mine? This reflects great parenting and a great school environment, but most importantly, a great heart and a wonderful mind. You don't have to go so far above and beyond common decency, and yet, you do it daily. How cool are you for that? Y'all are what I've always imagined social inclusion would look like.

One day, you're going to be grown ups. Don't ever lose the compassion you're showing for people like Morgan.

You will have other Morgans in your life, treat them just like you've treated him- with dignity, respect, and kindness. Be their friends always. The Morgans in this world needs the people like you if only for a friend... And you need them.

You kids are the best of the best. Thank you so much.

~Mrs. Jessi

Morgan's Mom

Glad Tidings for Us

As I watched Morgan sing loudly and off key in his Cajun Christmas performance, my heart swelled to the point of bursting. He's come so far. We've come so far.

I didn't need to sit by a door in case he freaked out. I wasn't disappointed in the teachers giving him the most minor role possible, for not challenging him, or for unwittingly setting him up for embarrassment. He wasn't the last kid up to the mike with a bit part...

He was Papa Noel and a great one. He counted so much in that performance. I could see his happy face from my seat in the front row, beaming like a beacon. His friends were looking to him when his cues/prompts came up. Not in judgement, but in gentle reminders and, when he got it right, they grinned.

I fought back tears and waves of anxiety as I walked back to his class for pictures of him. Had this been too much? Was this more my manifestation of fear than him being nervous?

The short answer? Yes. My anxiety. Though, granted, Morgan was nervous before performing. However, he was cutting up with his friend before the show. He was excited about the show. He'd been asking me about Papa Noel for days and breaking into the scripts for Boudreaux the magic crawfish. As a bonus, Ted, his kraken, was allowed to watch the show from the audience.

When I say that he's come a long way with holidays, I mean it. This year, Morgan needed almost zero prompting for Santa. Bay, actually, needed more. Morgan was a center of focus during his third grade performance and not just some afterthought. Both of us held it together on the nerves front- him better than me. He knows exactly how many "sleeps" until Christmas Eve, where two years ago he really didn't know or seem to care. He's watched holiday movies on a loop since Thanksgiving. And not just the same one. This is all progress, but not the "big" progress.

There are the crafty things... the coloring, the things involving concentration and fine motor skills. Things that, to be honest, I'd nearly given up on, I'm ashamed to say. Morgan gifted me with two gorgeous pieces of art today (last day of school), in a addition to his letter to Santa, which he dictated to his para, who wrote it down, so that he could copy it (see it here). I cried so hard. 

Morgan's art, to me, is worth framing and placing in a museum. I've waited a very long time for something like this from my son. It's fitting that all of this has come during Christmastime.

My favorite. 

This Christmas, I think my gifts came early from a very special little boy. It's like he knew what I secretly wanted, deep down in my heart and was afraid to ever ask or hope for. Some of these things are probably silly, but when you wait for something, or want to share an experience so badly... and then it happens, it's like a gift descending from a far off land. You don't know if it will happen again. You really don't care. You just cherish the moment and, if you're me, cry happy tears. 

Unless You're One of Us

Lately, I've really noticed that, while I am able to be around moms who don't have kids on the spectrum or with other special needs, and there are some moms whom I really adore, I'm really just more comfortable around my own people. My tribe of people who I don't need to make excuses that might seem outlandish to if I'm running late or if I have "that look" in my eyes when I show up to something. Also, my bs tolerance has run out. The following sums it up nicely, I think. 

Unless you're one of us, the parent of an autistic child, you might not know how much it stings when you hear, "but it's 'normal' for a boy/girl that age to do x, y, z." Yes, it might be "normal," but in our world, our kids are not and that has been made quite to us clear from the get go. And some of your criteria for such as qualifiers for what flies as appropriate behavior is baffling to us. Our children don't do this stuff. Why are your children allowed to get away with it?

Unless you're one of us, you might never know the excitement of finding a member of your tribe who speaks in the same anagrams you do at the park, grocery store, school, or other place. You talk for the briefest of minutes, probably, maybe even only with your eyes as you're calming a child or saying, "Nice walking! Nice playing!" while other parents are looking at you, askance. You want to hug that other parent, but are afraid of looking like a stalker. Sometimes you even get a chance to be by yourselves, have a conversation, exchange numbers, and form friendships.

Unless you're one of us, you never know how much that means.

Unless you're one of us, you might never know the tears you feel when you take your younger child's art work out of the folder, so beautifully done, and exclaim over it... as you automatically think back to your autistic child's work which still, though beautiful, is hard to make out, or might just be a line on the paper. It's hard to be happy sometimes for one child when you know how much your other child is struggling or has struggled.

Unless you're one of us, you might never have been told by a well meaning friend or family, "Don't you ever think about you're 'healthy' child? And how he or she feels or wants?" Of course we do, and up yours, family and friends who aren't even here. All the time. Every day, minute, and hour. We stress ourselves out thinking about our neurotypical kids, too, and wonder if they'll grow up with complexes about their parents not lavishing enough love on them.

If you're not one of us, you may never know the type of rage that consumes us when we find out our child has been hurt by someone... and how that rage builds when the incident is brushed off as if to say, "your child doesn't mean anything more than this piece of dust in the corners of the ceiling." You don't just want to burn that bridge. You want to make sure the people responsible are standing on the bridge tied to it when it goes up in flames. That's the sort of rage I speak of. To have your child reduced to nothing more than a "I don't get it" or a label, a term, a less than... it's beyond hurtful. And how do you explain that sort of injustice to your child?

Unless you're one of us, you might not know how great the gush of joy feels when you see your child playing with another child. And then two. Then three. Then more. Some of us never experience that, because not all autistic children want to play with other children. But as neurotypical parents, seeing that wish come to life is nothing short of amazing.

Unless you're one of us, you might not know the kind of restraint it takes when some jack wagon tells you, "You shouldn't shelter your son so much. One day you'll die and then who will take care of him?" Yes, there are people like him in the world. I encounter them. Frequently.

Unless you're one of us, you might never know the kind of restraint you must have when you are asked - to your face - questions such as, "why should your autistic kid matter more than my normal kid and get these accommodations?" or "why are my tax dollars funding this program? My kid ain't retarded!" After all, you aren't supposed to commit assault. It's illegal. And messy.

Unless you're one of us, well, me, you'll never know how much I can't stop talking about autism, other special needs, special education and the lack of funding for it, IEPs, my kids, etc. I've lost the ability to speak about much else and I might be okay with it. Just because my son is autistic doesn't mean he should cease to be a topic of conversation. Autism should be allowed to be on the table for conversation, too, so should special education. Learn people, learn. Yes, I do other things. No, I can't remember what they are half the time. It's called life.

Unless you're someone like me, you'll never understand the amount of anxiety I have about my son's future. And how, no, I just can't let go and enjoy the moment because I'm always waiting for the next shoe to drop. You'll never know the dance I'm doing with destiny of three steps hard fought forward and life knocking us two back.

Unless you live it, breathe it, and love it every day and want to advocate for change, I likely won't want to be around you... you don't get it. It's okay, really. It's not always personal.

I just prefer to be around members of my tribe and those who accept us.

Fully.

Morgan's Friend Ted

*Editor's note: I am not being paid for this promotion. I am merely extolling the virtues of the wondrous creature that is Ted, who happens to have been made by a friend of mine. 

Morgan and Ted, Day 1

About a month or so ago, a delightful package came to Morgan and Bay from my friend, Karla, over at The Itsy Bitsy Spider Crochet . In it, there was two baby krakens, one blue and one red. The blue one was meant for Morgan, the red for Bay. Both boys were delighted.

Karla had made me a kraken about a month before and Morgan had immediately highjacked it as a stim toy. I wanted my own kraken, so I mentioned to her that I thought this would make an excellent stimmy for him. Hence, the birth of Ted as a stimmy prototype for Morgan. Bay received his (whose name at the moment is Christmas, it changes by the month) in order to not be left out. Karla is really lovely like that.

The boys take their krakens to school every day. Bay uses his during nap time and when he feels anxious. Morgan, however, has Ted on him as much as possible. We're talking on the playground at recess, during desk work time in class, and even on the field trip last week to the swamp (I brought Ted, I didn't want Morgan to lose him). Basically, unless it's to the bathroom, where Morgan goes, Ted goes.

Well loved Ted, today. 

Morgan loves Ted's tentacles. He slips his fingers through them and tugs on their tightly crocheted forms. He rubs his face on Ted's body. He twirls him, spins him, and talks to Ted as if Ted is real. Ted is his friend, he says. Morgan does this sort of purring sound when he rubs his face against Ted, it's pretty cool. It helps regulate his senses when he's anxious or upset. Ted is being well loved.

I wanted to mention that Ted was a great icebreaker for me with Morgan's classmates on the field trip. They wanted to know why he carries Ted around. I told them that Ted helps Morgan with sensory overload, to help keep him calm.  I also pointed out that several of them probably have loveys similar to Ted at home, which help them feel safe, but they don't bring them to school because, due to their brain wiring, they don't get as overwhelmed with things like Morgan does. They all seemed to understand.

I understand that stim toys aren't for every child, but Ted and Christmas (or whatever his name is) have been absolute godsends for my kids.  We, so far, have been through a lot of stim toys with Morgan. However, most of them have been similar in that Morgan must be able to squeeze them -hard- and they must serve several tactile purposes on the go. Ted serves all of those. I know that Morgan is going to be getting another Ted or two soon. I'm scared to death of losing this one.

Bay and Christmas, Day 1

Now, some information about the krakens, which I highly encourage everyone reading this to go check out. The krakens are made in amigurumi form and made very well. I've washed them multiple times in lingerie bags on the gentle cycle and they're actually stronger, I think.

Karla sells these through her Etsy shop, The Spider's Attic, and there are several different colors. These are the direct links to our versions here (red version) and here (blue version).

To whet your sensory appetite, she also offers Octavia the Octopus, who is lavender scented, and Oswald the Octopus, who is weighted. I'm really eyeballing Oswald.

Go check out Karla's shop and blog! She also has some killer crochet patterns at her other Etsy shop, The Itsy Bitsy Spider.

And remember, if you buy a kraken, you can teach your kiddo how to throw them while yelling (or signing) "Release the kraken!" It's really fun.

A Non Verbal Incident

Today, I did the overachieving mom thing and helping out at the school with the PTA. I helped out with something we do called "Snack Shack" where the kids can buy snacks super cheap. BOTH boys were really excited to see their mom at the school, both there and throughout the day (Morgan had a head's up, so he wasn't discombobulated seeing me).

While operating Snack Shack for the third grade, I observed Morgan in my line... he allowed a girl to line jump. No biggie, right? Well, he, in his mind, had just made a friend. Not so, apparently. He started to script to her his usual feed of "I'm Morgan ----, I have a mom, Jessi, a dad, Thomas, a brother, Bay, a dog, Roxy, etc, etc, etc." She rolled her eyes at him and looked at her friends and giggled. Okay... Then, as he talked, she kept. doing. it. She curled her lip. Any neurotypical kid would have picked up on her facial expression, but Morgan's not neurotypical.

I observed.

As Morgan spoke, she kept looking at him then to her friend in unspoken communication as if to say, "Can you BELIEVE this kid?!" The eye rolling, the staring, the non verbal slights continued.

She didn't know him. She clearly did not know I was his mom- a lot of the kids at the school know who I am. Morgan had not recognized me yet, though I was standing five feet away from him. As I watched, and hurt for my son, who didn't realize the non verbal jabs being volleyed his way, I kept doing my job of handing out snacks.

 Usually, I'm looking for the nonverbal communication from him, or listening for the meaning to the scripts. It dawned on me that nonverbal communication was being used against my autistic son. Irony abounds.

I finally heard, "Hi Mommy!" as he recognized me. The little girl didn't look ashamed or even aware that she had done anything wrong. I helped her make her choice quietly. I did, however, mention it to her friend told her, "He's autistic. He's a nice boy. What y'all just did is wrong. He was trying to make friends and you ignored him and, worse, made fun of him." The little girl didn't realize that what had happened was wrong.

I was stumped.

I told a teacher who had been out there what had happened and was assured that the incident would be reported and taken care of. If nothing else, I wanted that little girl to know that the boy who had been trying to speak to her was trying hard to be a friend. And, even though she didn't have to befriend him, there was no need for that kind of behavior. Period.

On my way back to the PTA area, I passed Morgan eating his snack. I bent down and told him to stay away from that little girl. I said, "Look, buddy, you don't know it, but you were just made fun of. She's not a friend. She's not a bully. But she might be someone for you to stay away from. Okay?"

The staff and teachers made sure that the problem was resolved. The little girl was made to apologize and understand what she did was wrong. Morgan's teacher assured me it was handled well, by her and others.

It's made me think hard this evening about non verbal communication and facial cues/recognition that Morgan still doesn't understand. He didn't even recognize me until he was about a foot and a half away. That part scares me, still. But then, so does him not recognizing when someone is wanting him to go away or shut up just by their facial expressions. And trying to teach it feels like trying to teach him speech intonations, but not really.

That short incident reminded me a lot of an incident from this summer, but it was covert. So, so very covert. And the girls didn't seem to understand that what they had done was wrong.

As his mom, it felt awful to watch. However, as someone who has seen much worse, it was interesting to see school/child politics. Morgan was being, well... Morgan. He was doing what we've all taught him to do- be friendly, be polite, and try to make friends. But it backfired on him and yet, he was oblivious to it all. How many times a day or week does this happen and the paras and teachers who carefully watch him don't notice? They cannot be everywhere at once. The teacher who was standing a few feet away today didn't even see that incident. And Morgan didn't notice anything had happened.

Should I have kept my mouth shut? I don't know.

I just know that it was hard seeing that today as his mom.

Road to Acceptance

A friend, another autism mom, asked me recently when did I finally accept Morgan as autistic? Where did my acceptance of autism begin? This was in a chat, so my friend could not see my grimace or hear my chuckle.

The truth is, though I write about, preach, and fully believe in autism acceptance, there are some days that I wish that I could wish it away. Not Morgan, but some of his autism. Even though I say I cannot separate the two, sometimes I wish I could.

Like most parents who see their children struggle, or who have been through the wringer, I wouldn't wish that kind of emotional turmoil on anyone. I wouldn't wish for any person to have SIBs, to feel alone or different, or be told by society that he's wrong for how he's made.

However, this is how my son is made. And, frankly, I think society is wrong, not my son.

That being said, I accepted autism and accepted Morgan as autistic because there was no changing him anymore than there would be to change his laugh or his eye color. It took me a long time to get here and there are times when I am still not sure how solid the acceptance floor is underneath my feet.

Acceptance just seemed easier than fighting it, I told her. Morgan is Morgan and that is perfectly fine. I don't want to fix him; I want him to thrive, however that may be. At it's core, there should be nothing wrong with being autistic. It just is. 

To me, as an autism parent, acceptance is loving your autistic child so unconditionally that you don't want to change them, you just want to help them be the best "autistic them" they can be so that they can thrive. And also, so that you can thrive as their parent. If you're fighting against something as if it were a war, how is it helping your child?

I've been told, at times, that I speak from a position of privilege because my child isn't like other autistic children. My child isn't nonverbal. He is in an inclusion class with supports. He interacts in his own way with people. People don't see his autism at all times, at least, not right away. To that, I say check your own privilege. I speak as a mom who has been on both sides and has been scared as hell that her son would never speak, write, or interact- among other things. And I also know that none of these things are important qualifiers for acceptance of your child.

There are other parents out there like me, I know, who waver in their positions on acceptance. Who, on the roughest days, want to wish autism away, even though we know we can't and we know that it would be wrong to want to change the very wiring of our children. We know that we only wish for it to allow our children an easier life.

As humans and as parents, we're fallible and are going to miss a few steps along the road to acceptance. I think that's natural. Accepting my son as autistic means that I accept his quirks, stims, learning disorders, and I try to work with all of them. I don't fight any of them. Well, I try not to. I'm human and, as I stated, I make mistakes.

While I struggle with acceptance in all its forms, I don't struggle with accepting Morgan as an autistic person. However, I do struggle when I see him struggle. That's what I want to fix- his struggles.

How about you with your child?