Don't assume

Dear neurotypical (or, "normal") person speaking of special needs,

There seems to be a lingering misconception outside the special needs bubble, meaning that world out there which has nothing to do with special needs, that says it's to to stick your foot in your mouth when asking or talking about special needs. I know I'm probably flogging a dying, but not dead, horse here, but some things still need to be said. Because what I would assume would be common sense isn't. I guess that saying about assuming is very true.

If the person you are talking to about special needs is a parent, tread very carefully. We are a pretty defensive bunch due to the slurs which have been thrown at our children since the delays were first noticed, or even birth if we're discussing a chromosomal issue. Saying things such as "but he looks normal" or "but he seems so happy!" don't really help your situation. Yes, my child is happy. Yes, he does look "normal." However, you come off as a dumb ass when those are your qualifiers as "but he doesn't look like he's ----." Asking intelligent questions does help.

Thinking that people like my child are in an unfortunate circumstance due to their neurology is ignorant, plain and simple. That is assuming quite a bit. You don't know their life just as I don't yours. Don't judge and please, don't let those words flow out of your mouth before you've had a chance to check them. If you have to ask me if your question is offensive, it probably is, so don't ask it. Find another way. Most of us don't mind educating people about our loved ones or referring you to those who are grown and living what is considered fulfilling lives.

Don't apologize to someone for their neurology or to a parent for their child's neurology or physical condition. Not sure when it's okay to apologize? Then don't. My friend Courtney wrote a great piece about this. The very short of it is this: "conditions" like autism (I'm speaking of this because this is what I know.) aren't a walk in the park for anyone involved, least of all my son. Apologizing to me for him being born this way is going to make me want to set you on fire. Oh, and hugging me? No. Just, no.

Let's just drop that little word, "normal," now shall we? Normal is a setting on the clothes dryer, not a brain. No matter how "normal" a person might think their life is, I'm willing to bet if you scratched the surface you'd find something "abnormal" (another word which is pretty wrong to use when describing someone).

If you think that it's okay to use actual slurs based on perceived notions of intellectual ability, you're wrong. Those words are nothing short of hate speech.

Don't ever assume because I'm the parent of an autistic child that I might be a lesser individual than you. To the same extreme, don't think that I'm some sort of superhero. I'm a mom, plain and simple.

If the person you're speaking to, like my son, has special needs, don't speak slowly. Assume that the person has the same level of competence you do, even if you know you aren't smart. To not assume competence, that is, intelligence, is to automatically degrade that individual and put them on the level of an inanimate object. I cannot scream this enough: only ever assume competence, nothing else.

Don't pity my son. Ever. Hell to the no.

Know that if you are pigeonholing people like my son as "less than," then they (and their parents, friends and assorted spectators) are pigeonholing you as someone with little more than basic thought skills. You are now a nonperson in all of our eyes. Honey, ignorance can be fixed, stupidity cannot. I don't do stupid.

If you get anything out of any of this, good. If you didn't, then I'm sorry. I guess I assumed too much competence on your part.

 Sincerely,

Jessi
Mom to Morgan, a beautiful autistic boy

To the people with special needs and parents of people with special needs reading this, what would you add?

Goals not met

Before children I was a complete sanctimommy who looked down upon the notion that, in competitions or awards ceremonies, all children much receive a prize. "How will a child ever learn healthy competition if everyone is to get something?" I thought. Some around me told me I would change my competitive ways when I had children of my own. And then I did, but my views didn't really change.

Then Morgan's learning delays, disabilities, diagnosis, etc., all came to light. You would think I would change my mind, but I really didn't. Some might cry "foul" on me for this, but I advocate for so many concessions to be made for my child and I reward him by praise. I don't really want for him to expect there to be a prize or exception to be made for him every time he does something well. Like making it through a store without a meltdown, but not getting a toy for that. It took us a long time to break that mold, we're not going back.

Don't get me wrong, I hate seeing my child disappointed, what parent doesn't? I hurt when my child's feelings are clearly hurt. But what would I be teaching my kid if I demanded that the rules be changed for him? I already do that within the confines of the law and I have zero issues doing that. He needs an IEP in order to get through school. However, I don't feel comfortable saying that this must extend to awards ceremonies or other occasions. I've done this before and I felt like crap. I don't feel good about teaching him this is how life is run.


What brought this up today, while most kids are enjoying their summertime laziness, was Morgan getting into my car in tears on his last day of his reading program. If you've been on my Facebook page for a while, you'll know that the tears aren't new. He's a sensitive kid who is also Autistic. The combination can be tricky. Before he had come outside to the carline, I'd noted that most of the children (In fact, I think all but two or three, including Morgan) had Mardi Gras- type beads around their neck or little toys in their hands.

Morgan, to his credit, was holding his tears in check, but I could see the storm under the surface. He was going to blow and boy, did he. It turned out that the little prizes or beads were for the kids who had finished today with high scores in their reading programs. Morgan, though he'd made high scores in several of the programs throughout the summer, didn't make those scores today. He felt left out because he didn't receive the same accolades the other children did. He did admit to the ST giving him two cupcakes, however, when he'd finished up his programs.

"I feel stupid," he said, "and so left out!"

"Well, bud, here's the thing. You've worked really hard this summer learning how to read, right? And those other kids did, too. However, the goal today was to make high scores. You didn't do that. I'm really sorry you didn't. But you know, you were still rewarded for your work with those cupcakes. You see? And... you're not stupid. You're never stupid. You have to work harder than most kids, but that will never make you dumb. Don't say that, please?"

"Mommy, it's not fair."

Okay, this is where I really hated it for him. Actually, I hated all of it. Morgan has worked very hard this summer. But those other kids? They also worked hard. And, at the end of the day, Morgan was rewarded with two cupcakes for his work. He didn't make his goal, those other children did. He needed to see that.

I reiterated to him that the point today was to make high scores and he didn't do it. That it didn't mean he was "stupid" or anything else, just that he didn't accomplish that one goal. He calmed down fairly quickly (for him) after I explained things. But this has been weighing on my mind.

I feel in my heart that I've done the right thing by not asking for an exception. I'm curious as to if the parents of the other who didn't get prizes did the same thing. Do we, as parents, really need to demand that children are always rewarded, even when goals are not met?

I had promised Morgan a reward this morning, before any of this happened, for all of his dedication and hard work this summer. I gave it to him after because that was fair and just. He could have balked at this whole experimental reading program we tried on him, but he didn't. But I had to wonder as we were picking out his "treat," was this even correct?

Am I falling into the mold of parenting I dislike by teaching my son he'll be rewarded by doing something I fully expect him to do? Is this the same as paying him for grades (Which we don't do; Morgan makes good grades thanks to countless hours of tutoring and hard work on his part. He sometimes is rewarded for that, but we expect him to try his hardest- if that's Cs and Ds, so be it.).

What are your thoughts? How do your practice rewarding?

Live out Loud

*Sometimes I wish that I had called this blog, "Deciphering Life," because as I write more, that's what I seem to be doing. That being said, not everything I write is going to be about Autism or raising kids. Sometimes it's going to be about being a mom with some personal problems. If this doesn't apply to you, feel free to check back on the next post. Thanks, Jessi. 

As a person, parent, and woman, living out loud, that is, living an authentic life, is someone I struggle with  greatly . I find this to be slightly ironic since I encourage others to take this leap into doing something that I cannot do for myself.


Fear and self-loathing rule far too much of my life. I laugh a lot because I'm uncomfortable or because I know it makes other people feel good to laugh. It's the whole, "laughter is the best medicine" adage which so many others ascribe to that I feel I must I also live by. But it's a lie, for me. Doubts run rampant in my head and they're always about my own decisions and truths.

The boogey man is always there, waiting to get me. For what reason, I don't know. I acknowledge that this is painful, uncomfortable, and keeps people at bay. Always within arms reach, but I don't reach out. To do so might mean that people get close enough to see scars or reality. And that can hurt.

Pin it.

I wish sometimes that I could go back into my childhood and tell myself to not knock what I had/have going for me. That to be outspoken isn't wrong. To not always wear black, gray, or taupe. To stop being so hard on myself- there are plenty of others out there to do that for me. To not fear so damned much.

That one day, there will be time for all of that.

My two best examples of living out loud are my sons, Morgan and Bailey. They each march to the beat of their own drums and really don't seem to care what others think of them. I envy that so much. They don't censor what they say, what they do, and if someone stares, so be it. They have their mom to take up for them and that's okay- they're kids. I know that I'm very hard on them. I'm wanting them to be excellent human beings. I'm scared of letting go. However, this doesn't seem to adversely affect them. They laugh a lot (more than me), they're silly, and they are full of the crazies of childhood. I hope they never lose that.

This year, the first of my thirties, has not been bad. It has actually been pretty great. However, it's been what I have to call a "mirror year." That is, where I feel like I'm constantly looking in the mirror. I don't particularly like what I'm seeing.

I'm too hard on myself. Harder than I am even on others.

I don't like myself very much. That's my problem and I need to fix it.

I don't laugh enough.

I worry too damned much.

I need to breathe more.

I need to let go.

I need to take some cues from my kids, disconnect from the bullshit...

And live out loud. 


How about you?

People like you

Hey, you. You there, not raising a kid on the spectrum.

I know that it must look as if I "play into Morgan's Autism," but you saying things like this or you leaving comments for me about how I need to let him be a kid really just pisses me off.  You think you must know what this is like because you've spent some time around him? Or read about him? You're full of crap.

I know that I've been full of ansty rants for most of the summer, but there are reasons for this.

I'm tired. I'm tired of the looks and condescension. I'm tired of the crap advice coming from people who, though they might have known me my entire damn life, don't know my life. And who make weird observations like "it must be the moon cycle" or "autistic children can sense things.. like animals." I can sense things, too... like when someone is an ass.

My kid's Autism? Not about you.

My son is a kid. An Autistic kid. Some days, he seems to waves that "A flag" really proudly and high in the air. I let him. To deny who Morgan is would be to deny him a reality that we live in. A reality that, while it's not easy, isn't horrible. So, I let him chug, whistle, flap, and script those train stories. Who is he hurting,
anyway?

I'm tired, too, of having to remind people to cut the crap and stop using the word "retarded" around my child and me. Is it that hard? Would you say the word "nigger" around my biracial cousins? Hell no, you wouldn't. Use some common sense, please. Your ignorance exhausts me.

As the parent of a special needs child, I somehow feel like it's my duty to inform as many people as possible about how to speak to parents like me. Or to people like Morgan. To treat us as humans, but humans deserving of respect. This isn't a PC thing, it's a "don't be a jackwagon" thing.

Put yourself in my shoes. What would you do?

For now... I'm enjoying my summer with my child, but I'm tired. Of people like you.

*Don't make this about you, unless you know for sure this is about you. 
**I didn't bleep out the two slurs used because I find them both equally offensive.

I can't say that!

Why is there an incredible lot that special needs parents aren't allowed to say? We cannot admit publicly that our lives might be hard. We're not supposed to say, "God, I wish my life were easier. I wish my kid was speaking. I wish for normal, whatever the hell that is."

When someone tells me my life must be hard, I typically tell them, "No harder than some other people's, probably." Because I don't know how other people live their lives and I have very little to compare my life to except for what I see. I know how I have it. My kids are great. However, I also know that other families don't have the same worries my family does, so sometimes I allow myself to drift into the "what if" categories in my brain. They aren't pretty. I don't stay long.

Guilt used to eat me up for doing that. Then I realized that these thoughts aren't so different from being a "typical" parent who wishes for a nicer car, cleaner home, and a maid to do the laundry. Maybe I'm simplifying things, but hopefully, you can catch the sarcasm.

In the blogging community, there seems to be a lot you cannot write, for whatever reason. Here, have a sampling:

• You cannot admit to jealousy of other parents because this might imply you hate your children. But it doesn't... unless you're actually hating your children and specifying this. Because then you get attacked with pious bullshit. By the way, for an excellent way of expressing your jealousy, check out Lexi's Listen to Your Mother reading, "I'm Jealous of You."  

• You can't say you dislike what Autism is doing to your child without someone jumping on you and saying that you're saying you hate your Autistic child. Which you don't. You're hating the meltdowns, the pain your child is in from the overhead lights he can hear, and the sensory processing problems which seem plague your child. Because, dammit, sometimes this isn't a walk in the park. There is no sugar coating it. 
• You cannot admit how scared you are. You just can't. Because someone is right there wait to pounce on you and call you an ableist and tell you check your privledge. Folks, I'm this kid's parent and I'm worried. This is my place to talk about it. I try to be respectful and so do my friends who write. Get the hell over yourselves.
• You cannot say that you disagree with someone who has a different ability such as Autism without being called a bigot. I call bullshit. BULLSHIT. You can have different opinions from me and I from you. This doesn't make me an abelist bigot because I'm saying I disagree with you. Not the color of your skin, your sexual orientation, or your ability. Just you. You know, you can be wrong or have a different opinion than me without resulting to name calling. Also, I can think you're an asshole without calling your different ability into question.
• You can't talk about therapies, to an extent without wondering if someone is going to malign you for torturing your child. Yeah, torture. That's what I'm doing by trying to ensure my son is learning life skills. Thanks for that one!
• You can't talk about medicating your child. That's a big no-no. We're talking about launching the atom bomb of "Holy shit, did she just write about that?"
• You can't talk about how hard it is to go to the movies, out to eat, pee alone, any of this. Because someone will jump on you and call you selfish for wanting to do any of this stuff in this first place. Again, I call bullshit.
• You cannot say that some days your children are just jerks. Nothing to do with Autism, really, but they were jerks. I won't even apologize for putting that out there. Maybe I need to develop a tougher skin, but when my sons tell me they hate me, it hurts. Or when they destroy something I cherish, it sucks. Okay? 
• You cannot wonder out loud what life would be like if it were different. Ever. That's bringing in the big guns.

•  You cannot pretend, with certain groups of people, that Autism is anything less than a gift. I get it. My son is an amazing person with incredible abilities. However, I don't perceive those abilities as anything less than what they are- the way his brain is wired. I wondered how this looks from the other side of the fence, so I asked my friend, Flannery. Her take? "Autism means I can no longer be a regular woman, with regular worries and fears. I must pretend that autism is like a special gift from the baby Jesus... Sometimes Autism is like a one-legged whore, working the street corner at 2am."
• You can never say that, if you're expecting another child and have an Autistic child already, then you hope this new child is a NT. You just can't. It would imply that you loathe the child you already have, love, and cherish. Who you are fighting for in the schools, in the doctor's office, in public, in your family and who you would fight the devil himself for. But no, you can't admit that.
•  You must never, ever, EVER joke about Autism. Ever. I say screw that. If you can't laugh at something, then what's the point?

I, as a parent blogger, have a lot to say. But there is a lot which is not supposed to be said in the open. I'm guessing I probably messed that up today. If it offends you, move along. This is my truth. I'm not sure why others are allowed to speak theirs and yet I and my friends are supposed to be silenced. 

Oh, right... I'm not supposed to say that, right? 

Know your tribe

The storms in our home have swelled like monsoons, poured themselves out, gained strength again, ebbed, flowed, and now, finally, seem to be abating.

Yesterday, last night really, was rough. Without specifics, it was just... hell. As a parent, I tried my best to comfort my child and eventually, what I was doing worked.

But I was spent. Tapped out. Stressed out. I needed a tribe member or several.

Pin this.

I'm supposing most NT moms have their own "tribe," that group of people (other moms?) who they can call on for help and support. Well, I don't exactly have that, or haven't had it until recently. But God, since I've discovered it, I've realized just how important it is to have that network of supportive people who get it.

Stopping right here... If you are on Facebook, get a tribe of people who get you. If it's a big support-type network and you're comfortable with that, fine. If you need something smaller and more local, start something. I belong to some great groups filled with people I've never met and also a couple of groups that are local. We have Autism in common.  We have special needs in common. We support each other when shit hits the fan and cheer like mad when a milestone, big or small, is achieved. We're all picking up some of the slack virtually where IRL (in real life) family isn't there to do it, or doesn't want to have any part of it. Same goes for IRL "friends" who dropped off the planet after that first Mach 10 meltdown.

We get it. 

As for the other side of my tribe, I've been  lucky enough, since moving to Louisiana, to make fast friends with a neighbor of mine, Sherie. She actually lives on top of me. Her two kids are similar in age to my two boys. The kids play well. Her youngest, a boy, has some sensory and attention issues. She and I get each other and our sons' histories of meltdowns, children not wanting to play with them, and stranger's mean looks. We've each been through IEP meetings and have perfected our "f*** off" faces. We're tribe members. Doesn't hurt that I think she's pretty hilarious and swears more than me.

Last night, after I put the kids to sleep, I texted her something like 14 messages in maybe two minutes, each one an escalation of tension and hilarity. I was losing it. She told me to come up. We laughed over the mess my week had been because if you can't laugh, yell, and curse, you'll lose it. She's definitely in my tribe.

I have some other tribe members, we're kind of a scattered bunch from my end. I'm horrible about keeping in touch with my local bunch. And, I'm new here. So, I'm kind of shy about inserting myself into an established group of terrific (seriously, I haven't met a mean mom in this group yet) and involved women.

I woke up with some trepidation this morning. Morgan was calm, but still super stimmy. Super scripter in full force. I put on my gym clothes... took him to school. Took Bay to the gym with me. Tuned out the world and my problems for a while.

I was feeling a off. Just... not quite right. Like I need to run (hahaha! right?) or write or do something to crowd all all my fears and doubts which were stabbing my brain.

I turned around to clean off my elliptical and there, right behind me, was another member of my tribe. Funny, isn't it? Sometimes we pop up just when we need to touch base or talk to each other, I think.

I hope you're able to find your tribe.

Storms

Our days are sometimes complete crap shoots. We wake up and have the schedule. It's there and waiting. In this house, Monday though Friday, we follow the damned schedule. Even with the schedule, nothing can really be predicted. We bump into people in the outside world. Anxieties about the future lurk. Setbacks happen, they always happen. But I've got this.

I've been wrong before.

Sometimes, two hours go by and it seems like everything is different but the surroundings haven't changed.

This morning was bright and sunny. No clouds. Perfect and hot. I took Morgan to school and we chatted, sang along to songs. He seemed happy, content and excited to be going to his reading program. He was goofing off. We posed for a silly picture before he headed off.

He won't stop making this face.

Two hours later, I picked up a completely different child. He didn't recognize my car, even though his therapist was steering him toward it and I was waving. His functional (as in, conversational) expressive language had shut down. Scripted speech only and that was coming in two word snatches. He was so stimmy. Oh so stimmy. He was bouncing up and down like Tigger.

He said he had "a pain" and pointed at his head, so I figured it was headache. When I asked, he started crying. I called his dad, who wanted to talk to him. By then, Morgan's speech was incoherent, but the crying had stopped.

I examined his pupils, gave him some water and asked some questions, none of which he could answer. I knew we are out of Motrin, so I'd have to stop by the store on the way home. God, the store. I hate the store. I hate bringing Morgan into stores when he's like this. Not because of how people might react to him, but because of how painful I can see this experience is for him. 

I told Morgan the four steps we had to take in the store: return the movies to Redbox (okay, I could have skipped this one, but he was kind of calming down, it's quiet over there and he likes hitting the "return" button), grab some Motrin for him, pick up sunscreen, and check out. Redbox was easy. The store wasn't crowded. My hopes went up, slightly. We went to the medicine area to get Motrin, everything's fine. Sunscreen was a breeze. Morgan wasn't talking still, but he was humming, chugging, chuffing, whistling and bouncing around. He was touching all the things!

Then, somehow, he ran out of steam. He lost his little bubble of happiness he had going right before the checkout. My giant of a boy needed to deflate, it seemed. He just kind of slumped down on the floor, taking me with him, sitting, and began to cry great, huge sobs. His fingers were in his ears, his eyes looked scared, and he couldn't tell me what exactly had made him feel this way.

If people stared and looked, I didn't notice or give a damn. He's my son, he was hurting, and he wanted his mom. It took me to a time when Morgan couldn't talk and cried a lot. When all I could do was try to hold him and let the storm pass.

Within a few, or fifteen, minutes he decided it was time to go. He decided he wanted to help me checkout, so I let him. We came home and had lunch, me worrying the whole time.

He began speaking more again, in sentences, but all in scripts. He built a "roundhouse" out of the chairs in the living room. He lined up the trains along his floor in his room. He's licking his face- if he doesn't stop, it will be raw by morning. There's more, but this is what I'm comfortable telling about my son.



He's in the pool now. Calming down. I'm not there yet. I'm still worried about what made him upset in the first place. He's still scripting more than usual. Where did the kid from this morning go? What just happened? This was like going through a squall. Is there another meltdown coming? Can I get radar with this?

Tomorrow, we will again stick to the schedule and hope for a storm free day. I'll pack an umbrella just in case.