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?

Our Autism #thisisautism

This is our autism.

Our family who loves our autistic child deeply. Who, if given the chance, would change the world before changing him.

A nine year old boy, big for his age, happy as a lark, laying in the middle of his self created Island of Sodor, happily scripting stories from the Thomas the Tank Engine series. His little brother looks on, frustrated that his big brother is taking up floor space, but I gently remind him that it's Morgan's turn to to play on the floor, so play along, or play with his Legos.

Our family taking trips into "the big city" to walk the streets in the French Quarter, someones hand tightly gripping Morgan's, anothers hand on Bay's, while all of us dance to the strains of jazz playing somewhere. Autism doesn't hold us back. Morgan loves our city and has taught us to find the details we might have missed otherwise. We notice and celebrate the beauty in the ordinary, whether it's cracks in hundreds of years old sidewalks or drain spouts shaped like fish mouths.

A boy who has brought more joy than pain to our lives. Who once was hard to understand, but once we learned his language, welcomed us into his world off scripts... all we had to do was learn them. Who loves with his mind, body, and soul. Who has the greatest belly laugh ever. Who tells all women that they are "beautiful, like a rose." Who will be your friend.

Our autism looks like a family with a child who hums, chugs, sings, bounces, and flaps. Who sometimes needs fidgets or earplugs, or even sensory breaks. He also sometimes announces whatever is on his mind right this instant. Sometimes we get funny looks or even questions, and I am glad to explain because autism is nothing to be ashamed of, but to be educated about. When we get the harsh criticisms or stares, I politely give people the finger- that's our autism.

Our ideas of autism, acceptance, and our coping mechanisms have grown with Morgan and the amount of community we have discovered.

I used to think that autism was a "bad" thing, because that was what I was taught. I now know that you can be autistic and have a full life.

You can be autistic and be married.

You can be autistic and have kids.

You can be autistic and be happy. 

I learned that last one from Morgan, my son.

He is our autism.

If It Makes Him Happy

I know I've written and joked a lot about wanted to burn all the things Thomas the Tank Engine related. Some days, I really do feel that way. But I don't stop my son, Morgan, from having what he loves or playing with those trains because they make him happy.

Last year, I wrote about how, one year, there were no Thomas' under the tree. Morgan freaked when he finally realized that what he'd asked for (a litany of engines) weren't going to pop up. Mom foul on my part. I was selfish and wanted a Thomas-free Christmas. I was thinking about my comfort level, not his. I was following the "Age+" and allowing it to bother me.

I wasn't thinking about how much Morgan lights up whenever he plays with his trains. Or how he can calm down when he's scripting a story.

This year, I'm being firm with people, I'm letting them know that it's Thomas or nothing- unless the boy states otherwise. Not much else interests my kid. A few people aren't very understanding, but I could care less. This holiday isn't about them- it's about the kids, and one of the kids is my son. What makes him happy is Thomas.

Besides, why waste money on something which Morgan won't play with?

That's what I always go back to. You know, if you're uncomfortable with this, send a gift card. What this autistic person in your life loves is Thomas the Tank Engine. It makes him happy, very happy. And if something brings that much joy to one kid, it can't be bad, no matter what the "age +" says on the box.

Yes, my home is beginning to resemble the Island of Sodor, but Morgan's happy. Isn't that the goal of raising a kid? Allowing them to be happy?

If you're reading this as someone who loves an autistic child, remember that, in our world, age appropriate is something mandated by parenting books or toy manufacturers who don't understand our kids. Brush that concept aside. We're only concerned about our kids being happy. They deserve that, especially during the holidays. All kids deserve happiness during the holidays.

Autism Speaks isn't Speaking for Us

Suzanne Wright, the co-founder of Autism Speaks, released a letter yesterday as a "call to action" for the nation. For the government to set both educational and insurance standards for autism. I actually take very little issue with this.

What I do take issue with, however, are the allegations Mrs. Wright made in her letter as to how autistic families live, eat, and breathe. That wasn't my autism, all the time.

This is Morgan, my nine year old autistic son. He is in an inclusion class in the third grade and, thanks to determination on his and several other people's parts, is doing very well. He stims, he scripts, but he is happy. He struggles, he doesn't understand quite a bit of things, and, yes, we deal with SIBs, but overall- he is happy. 

He is also toilet trained, able to dress himself independently, and knows how to make toast.

This is our autism. 

"Those families are not living."

My family lives- fully, thank you very much. We choose to go on trips, adventures, teach our children, and live life as fully as possible. Don't slap a functioning label on Morgan because we aren't able to do this. His label has changed since autism first became apparent. And functioning labels are, frankly, irrelevant to how a family might be able to live.

You choose how you see your life. Attitude is everything. So is your support network and and I understand those might be hard to come by, that's why social media has become so important to so many.

"These families are existing."

Aren't all families? Lady, we are living in a godawful economy. In this family, we are worried about medical bills which aren't even my son's. We are stretched thin. But we make it work because we have each other.

Morgan is my autism. Our autism. He has changed so much since his diagnosis. He has changed so much since that word was first uttered at the age of three to us, when he was nonverbal.

Our autism is a gentle giant of nine year kid who is finally playing wall ball at school. Who is now one of the most popular kids in the third grade because he's that sweet at school. Yes, we have aggression issues at home. However, I can't focus on those because that will tear me apart and it's not representative of my son's being.

I try very hard on this blog to be respectful of my son and family. I try to be respectful to autistics in general. What was in that "call to action" was not respectful in any shape, form, or fashion.

Yes, things need to change. Yes, there needs to be a call to action. I fully agree with that.

 First things first- Autism Speaks needs to learn that Autistics can speak- loudly, even if they must use devices. My son is one of them. And Autistics hear. My son is one of those, too. Perhaps that isn't the autism that Autism Speaks wants people to believe in, but this is the autism I will continue to write about. This is my autism.

Autism isn't a death sentence. Get that through your heads, Autism Speaks. You aren't speaking for anyone except for those who want to buy into fear mongering.

Excuse Me

I'm afraid that I wasn't clear with my post yesterday. That wasn't meant to be an incredibly negative post, believe it or not. I'm usually not a negative person, but a "strong" person. Or, so I'm told. I'm not sure if I believe that.

I was told that what I'm jokingly referring to as "Facebook Island" is self preservation. What I didn't delve into are all of the other reasons I set up that account.  The reasons that really don't have a thing to do with neurotypicality, other people's lives so much, or what is being deemed by some as pure negativity.

For the wonderful outpouring of support I received on my pages yesterday- thank you. 

One woman wrote me a message, which, in the beginning, summed up my current feelings perfectly: "I don't know you or your life..."

That is at the crux of how I feel for the people who want to call me negative. Who want to say that I need to put on a positive spin because "sometimes life sucks." Yes, life sucks sometimes, but what happens when you feel like you're at the end of your rope or beyond and it has nothing to do with an autism journey?

I was criticized for deactivating my personal Facebook page by people who don't know my life, but think that they do. I was judged unfairly.

Let me break this down... I've been on medication for the last two weeks to shrink my endometriosis, it's called Megace. I've talked about it on my Deciphering Morgan page. I mentioned it making me "nuttier than a fruitcake" in yesterday's post.

It's a drug which was supposed to shrink the endo in my body. It's also a drug which is used to treat cancer of the breast or uterus (i.e. tumors). I was taking it three times a day. 90 pills in three weeks is what I was supposed to take.  Until I couldn't take the side effects any longer. Click the hyperlink on the name, it gives you the lovely list of those.

What I left out is how bad the side effects have been for me. How I've been muscling through as best as I can, but I can't any longer. How I've now had to come off of those potential surgery avoiding drugs because of the fact that they were causing me to be incredibly fatigued, swell horribly to the point of more pain, and, the have uncontrollable massive anxiety attacks and the worst suicidal thoughts which even my anti anxiety drugs could not touch. How the pain was made worse, but I've just had to learn to live with it.

How that's the reason, in addition to so many others, I had to retreat from "full Facebook" for one week- and it didn't even last that long. Just one. I neglected to mention this because it's no one's damned business but my own. However, I figure that if one woman reading this is investigating it versus another drug or surgery for endo, she needs to know what it can do. Enough women have messaged me in the past two months about drug or other medical treatments for endo; this could be valuable information.

I've retreated from my friends and even family because I don't want them to see or know me like this. I don't want to be that asshole from the Giving Tree who kept taking until there was nothing left to take. Plus, there's that whole crying thing I've been doing in the last week and a half. Who wants that?

I prefer to be proactive enough about my life to know when my mental health isn't good and get help. Take a bit of a social media break. Find a happy place. Find an outlet. Hug my kids. Know what's worth living for.

But no, that's wrong.

This isn't "leaving anyone out of my journey," this is self-preservation and knowing when enough is enough and being afraid of even harsher judgement.

At the end of the day, I know where my positives are- my children, my husband, and my real friends. You know, my support network?

Sometimes, it's necessary to talk about things which are not pretty or uplifting. Kicking people when they are down is probably the lowest form of inhumanity I know. It does not move you higher up some imagined social media ladder- it only makes you look like a thoughtless jerk.

Everyone is going through their own journey. Some share it with a mediocum of grace, others do not know how. Choose your category.

Excuse me for telling my truth.