Sleep(ness)less

When I was a kid I was really freaked out about my parents going to sleep before I did. Something about it was so unnatural And anxiety-inducing. I knew they'd be going to sleep at some point of course, but falling asleep with them still awake made me feel like someone was in charge, keeping things in check, holding down the fort. I didn't want the responsibility of being the last one up and in charge of the household.

I sit here in the dark listening to the squeak of his bedroom swing. I wait for it to quiet before I allow myself to get in bed. He will eventually fall asleep... But I hold down the fort until I know he is safely still .

Hypervigiliance

https://www.disabilityscoop.com/2009/11/10/autism-moms-stress/6121/

There's this thing that happens when you become a mom, a switch is flipped that enables you to hear your baby before they even cry, to be able to sleep- but still be a second from waking, the ability to read minds, to anticipate needs, wants, moods.. to be able to be continuously 10 steps ahead of your child. It's literally a super power. It's hard to explain, but if you're a mom, you just KNOW what I'm talking about. It's supernatural.
Most parents have this hightened sense through babyhood , but some of the intense hypervigiliance does dissapate some as your child grows, gains skills and independence , they are slowly taking on some of their self off your shoulders.
This does not happen to parents of special needs kids. The hypervigiliance does not end. There is often no day on the horizon that you are waiting for that symbolizes REST.

counseling

"I've been living with autism for 16 years, and it's hard, but there's always something we can DO , there's always a solution... THIS- depression- this I can't do anything about. I can't fix it."

- "and it's not fair."

" no. it's not fair, his life is already hard enough"

- " it shouldn't happen, but it does. co-existing diagnosis happen  ...Kids with autism get brain tumors, and it's like- What.the.fuck."




and that's when I knew I could talk to her. She gets it. she gets it because she understands autism intimately, and she knows that depression in an autistic person is different than it is for others. If you don't understand this, you can't help me.
Autism is a DOING thing, it's a problem-solving, brain-storming, puzzle-building, detective sort of thing. Depression isn't that. there is nothing I can DO, SOLVE, or FIX. I can't brainstorm out of this. I can't analyze it for him, I can't give him a remedy. Depression asks me to do nothing. it asks us to surrender, and just ride a wave. I somehow need to be both these supports at the same time- though they completely contradict each other.  



- " you've been fighting an enemy for a long long time, and suddenly, without warning, a completely new enemy blindsides you and starts attacking  from another angle, and the way you have been fighting for all these years does not work on this new enemy"


"yes."

lost

everything feels like defeat. achy, tired, weariness. we just hikedamountain. we just got home from war. we just did the biggest thing possible, without a pat on the back, without a parade, without a book deal, without a crowd, without being knighted. without a goddamn break. there is no one waiting for our return with a hot soup and a bed to catch us in.
get back to it.
take kids to school. fix the car. brush your teeth. stand up and sit down.  say words. smile. answer the phone.

my dad is gone. i know where he is. i don't know where he is. god please let heaven be real. please be true. i need it .
i need my dad. please be here.
it wasn't supposed to happen that way.
i spend so much energy manipulating the images i see when i close my eyes, that i can't sleep. when i stumble on an image of him healthy and whole, i just keep thinking it.  holding it there in front of my eyes. replacing it with the other images.
hold it there.

people die. people i know lost their dad or their mom. it happens. i'm in the club now. i'm one of those it happened to. i lost my dad.  i lost him. where is he? he doesn't feel gone, but i can't call him. i can't hear him.

get back to it. the living.

how do we do that? how do we make this have meaning? how do you carry it ?

getting bigger

having a kid with special needs (or more than one) teaches you a lot of things
i'd venture to say i wasn't a person of that much substance before my kids taught me these things.
one of which is - perspective.

your expectations out of life get very small in a way. will he speak? will he sleep? will he use the toilet?
oh yes. every parent thinks these things, but they don't really mean it because in their heart of hearts they believe these things will happen. not all of us can know these things for sure.

there are days when i actually want to go back to those times when the hardest part of my day was " what does he want?" . yes. even with the tantrums and the staying awake all night-
because it was simple. my day was so simple. my goals were so simple. "what does he need? what does he want? is he safe? " that's it. nothing else. it wasn't ok but it was ok.

no one ever gave me a reason to hope. no one ever could say what would happen or what he would be able to do.
i just chose to hope. i chose to believe a destiny that didn't exist. I willed it into existence.

he speaks. he can use the toilet. he sleeps.

i am afraid every single day. i wake up in the night with a fear gripping me that takes all my breath out.

"what does he need? what does he want? is he safe?"

how do we keep them safe?

every parent worries as their child grows. every parent worries when they start school. and then again when they leave that school to go off to another.  i know it is silly to say i worry more. i worry the most.
but just give this one to me. i'm more worried than you.

thank you thank you thank you for letting me have him. for giving him to me. i'm always so ...relieved  that i had him and no one else did. because no one else could love him the way i do. no one else can read his mind the way i can. no one else knows.

how do i let him go ..OUT THERE in this world when i know what he can and can't do. i never ever admit the "can't" because i know that the only reason he ever could was because i willed it to be so. so i will never tell him my doubts. i will never utter them into the blackness of the quiet still night.

let's be friends

my 4 year old likes to stay up till 11pm talking to stuffed animals and watching netflix on the ipad.
she has the humor of an adult, but careful- she's a landmine and cries if you look at her cross-eyed.
she has the greatest giggle ever and she tells me she loves me 3,000 times a day. She loves to snuggle and is kind to everyone . but when  her brother bugs her she will charge like a rhino.
she eats about 10 things . that's it. she doesn't like to try new things. she thinks icecream heals wounds.
she likes to do anything her brother does.
she likes video games and drinks nothing but applejuice.

my 8 year old is afraid of black holes, clowns, spiders, math, deep water, natural disasters, heights, and the dentist. sometimes he carries a flashlight around "just in case".
he cries easily and it's a very loud screamy wailing cry they can hear in other galaxies. He hates fiction and loves to learn REAL things. He's extremely creative and talks A LOT. his favorite color is currently the brightest neon green there is. he is an adventurous eater. he loves his cousin. he loves legos. he loves video games, they also plague his life.

my 11 year old is never mean on purpose. he is highly motivated by other's feelings and does not ever want to make anyone sad or mad. he likes quiet. he likes it when other's follow the rules and do not upset anyone. he loves animals and is not afraid of any bugs. he will catch them and let them free outside. he likes movies and games because they are things that are already scripted out and he can follow along free of stress. he likes to anticipate things, he does not like surprises. he still snuggles with me and tells me he loves me every night. he likes to swing on the swings higher than anyone else and let go for a moment so he can float. he hates when people change things in  his routine, he hates when people talk about private or gross things. he hates waiting his turn . he hates it if he thinks he's not being listened to or understood.

he likes to paint and draw and he loves to tell jokes because he likes making people happy. he doesn't care what is "cool" he still appreciates shows he likes when he was a little boy. 

he loves video games, they also plague his life. 

i don't feel like i know what's going on. i don't feel capable. i have a phobia of paperwork and i hate making phone calls to people i don't know. sometimes i worry so much about other people that it makes me anxious and depressed. i worry about most things actually so i have learned to distract myself by Doing Things and Taking Care of People. my kids provide me with all that i can handle so it works out. 

painting makes me feel like myself again and i can float. i love art and colors and nature and music.

i am really bad at fitting everything in. i forget appointments and run out of time . i lose things. 

i hate bugs. i don't like too many noises at once. i'm not very good at making decisions. 

i'm a verbal processor so sometimes i have to talk about things A LOT to figure them out. 

i love the woods. i'm scared of deep water. (i'm scared of a LOT of things) i can't do math. 

letters and numbers always appear in color in my head. i love clothes. i like me when i'm running. i struggle with my weight. i feel lonely a lot. i love being a mom. i love being an artist. i suck at mostly everything else. i hate video games.  

i'm married to an ex skateboarder. i'm not completely sure who he is yet. i'm not sure if he knows either. 

social events #autism

i am tired of accepting invitations because I worry about someone's feelings even though i know it will be a difficult situation for my family. So why do i keep doing it? the truth is, it's hard to face a good friend or family member and admit that what you have just been invited to will be too hard for your autistic child and if you DO say it you are immediately met with this response: " oh he'll be fine!" or " we don't mind!" - Translation: we don't care if your child struggles or freaks out. This is NOT helpful and makes it even harder for you to say no. occasionally they will ask you what your concern is, but when you try to explain - they shoot down every reason you give. the truth is, if you don't have an autistic child anything i say will sound like a ridiculous excuse. "too much open space" "too small of a space" " too loud" " too many animals" " too many children" "boring" "smells bad" " dog hair" "he hates the food" what parent is really going to say that? no. you either make up the best most realistic excuse possible, or , you smile and start preparing. you pack 2 more bags than the average parent. you feed the kids PRIOR to the party so they don't get upset about eating things they won't like. you bring games and extra clothes and any other distraction you can think of. you spend the entire party glued to him with watchful eyes waiting for the signals that he's had enough. you don't eat, you don't have any meaningful conversations. you don't sit down. you have anxiety the entire time. it is a nightmare. when those signals start happening your hosts will suddenly decide to "help" he's raising his voice, trying to run out of the room/area, he's demanding to leave, he screams he hates the food, or the smell of something. And they try to TALK to him, they decide now would be a good time to offer conversation, and tell you "mom- relax, we're all fine, have a seat" etc. By the time you get out the situation is too far gone. the ride home consists of trying to diffuse your child who has just been through what he probably feels is a terrible miserable evening. he's had too much of everything and he's hungry. when you get home you need to do everything at warp-speed in order to get back into the groove so he can calm down. you run the shower, you get snacks, you turn on a favorite show. bedtime is pushed back in order to get back into a routine. you have a migraine. you're starving, your back hurts, you have been holding back crying all day. everyone finally goes to bed and all you feel is angry. why do we have to keep doing all these things to make everyone else happy? to make everyone else feel comfortable? just once i'd like someone to ask me what scenario would be best for me and my family to be able to participate? as a mom to an autistic child i can't even count how many social gatherings we've endured that i wish i could forget. the frustration. the sadness. the embarrassment. if you're going to invite us, at the very least give us a way out. let us say no. don't argue with us, don't pretend you understand. don't tell me it will be "fun" or " relaxing" don't tell me "he'll be fine" you don't know my son. spend your entire party doing everything you hate . put on clothes that are too tight and turn the music up too loud and cook food that smells too strong and balance a stack of books on your head while someone kicks you in the shins. did you have fun? don't tell me you understand. just once i'd like someone to be honest and say " i have no idea what you need, but if you tell me i'd be happy to try" or at the very least just let me say no.