Independence. ?

Sometimes independence looks like tailing your kid from a safe distance like a stalker .
Here's a story (there's a moral here, stick with me)
My son is 17, he wants to do what 17 year olds do. I get it. But he was upset, and upset = irrational and unpredictable. He took off on a scooter and headed to the park. I gave him a headstart, and then got in the car. I saw him head into the park , and then drove to where I could see the swing from the road. Sure enough, he headed to the swing, and feeling proud of myself, I quietly stalked from the car like a creeper, at least he was safe.
Until ..
He hopped off the swing and walked further into the park. I watched, but couldn't see where he went . I drove home and told my husband to bike around the perimeter of the park.
I waited , a bit too long. He came back, out of breath and said he couldn't find him .
Hoping he would show up, I contemplated what I could actually do in that moment. My phone rang. When I answered , all I could hear was music.  I hung up. The phone rang again, again, just music. I was confused, but started to see an incoming text - something about my son, at a party, all ok... Wanted to let you know...
I showed my husband and he said "there is a party happening near the park entrance on the other side! I drove over, and looked for loud live music. Sure enough, a house party was taking place, live band in the driveway, kids, a trampoline, lots of people, and my son. In their garage helping himself to soda and brownies, and dancing to the music.
Relieved, confused, and humiliated, I caught the eye of a woman with cellphone in hand , and she quickly flagged me over. Turns out, by some crazy miracle she was the old nurse of our pediatrician once upon a time, and had been the one attempting to text me.
The good news in all this, was, my son was wearing a bracelet I had made for him with his name, and my number, and the added note: "autistic- may not respond" . I had it made in the event he would be questioned by police, and I told him to point to his bracelet and say over and over "read my bracelet" . At 17 my son is as big as a man now , If a 5 year old wandered into a private party and started dancing , people would respond with grace and care, but a strange man? You hope that police are not called, you hope he isn't misunderstood, you hope he doesn't panic, you hope he doesn't .. well, you think of the worst things. But here is what I'm choosing to focus on- he handed his bracelet to this woman, this older nurse, who looked like a safe Gramma, and said "can you call my mom for me and tell her I'm here"
THIS IS A HUGE WIN guys. He did it. He remembered to call me. He didn't have his watch on that can make a phone call, but he had my number on his wrist and he used it!
But, yes, he did bomb some random family's party, He did eat their snacks, and He was very much dancing away in their driveway . It was not good...it wasn't a safe thing to do, but, it could have been SO. MUCH. WORSE.  The person who's party it was recognized my son from the farmers market, from his reputation as an artist, and one of the guests used to be his nurse when he was little, and he asked for assistance to call me. These are the things that saved us , this time. Community. I can't underestimate the importance of being involved in your community in some way. Stick to a small town, and force your introverted self to be out there , with your child, meeting people, gaining a reputation , gaining their trust, so that if you lose him/her at some point, or there is a problem, a crisis , they call YOU, and NOT the police.
Thank God it was ok this time.

When they don't hit a milestone

This week we found ourselves at the DMV to get a state ID for my son. It hadn't occurred to me that he needed one, but not being in a public school , he doesn't have a school ID, and he has had a few things come up recently where he needed an ID.
I filled out the paperwork and watched as he signed his name is LARGE caps on the line , and needed to be reminded how to spell his last name. I watched as he stood for his photo just like the other 17 year olds getting their drivers license. The ID looks just like a driver's license , but it's not one. I pretend that I'm not bothered that he isn't getting his license, that he will likely never get it. It's another milestone that we are not doing.
The truth is, I'm not upset for me, but I am worried for him.
We all worry as parents, right? But not like this.

Sad

I let my son sleep in so I could cry by myself.
And that is in my "pro" column today.

Mental illness

I still don't even know what this is. Is it the autism that makes him sad? Or would he be struggling with this either way? Suddenly my life has ceased to be my own, and all my minutes are hung on whether or not he is happy in that particular moment.  My whole life is now about holding him above my head while I tread water. I'm a terrible swimmer and I'm afraid.

THIS. 100% this.

https://www.yahoo.com/news/no-one-says-loud-raising-123351942.html

Quit freezing my lettuce motherfucker

One of my kids brought up some article about personalities based on the month you were born.. and she says "it said people born in May are cheerful .."
I hold my breath
but my son pipes up "whatever ! Just because mom is really positive and happy has nothing to do with her birthday - it's a COINCIDENCE"
Exhale.
It's impossible to truly know what you're kids think of you- right? I put in MASSIVE amounts of energy to portray positivity to my kids. I really do. But i never know if that comes through , if they feel it or not. I have no idea how they SEE  me ever. But I try. I try so hard. And I try so hard to never be angry AT them . I take deep breaths, I watch my tone, I try to reassure them if I'm cranky I'm just tired -  it's never ever THEM ..

But it has to go somewhere right?
This might explain why I just told the produce drawer in the fridge to go fuck itself.

Hospital

"I don't  want to to be imortal. I'm  stuck in pergatory. I want to end it. "

I know what he means, but she didn't. Her eyebrows raised in concern as she typed .

"Can we tour the facility?" -No. "Can we see photos of the rooms?" -No.  "I would need to prepare him...if he has a meltdown can we leave? " -legally we can keep him for 48 hours against his/your will.
"Will you work with his Dr on a med plan?"
- the Dr will decide what he should be on. We will change his current med immediately and not gradually or slowly"

"If he has a meltdown- " - everyone has meltdowns here. " But a meltdown in an autistic person is different than a neurotypical person"
- meltdowns are meltdowns.

It was becoming increasingly clear this was not the right plan for us. Not at all.
She left to speak to a Dr. She wasn't coming back... We kept waiting... Suddenly realizing we could not get out- all the doors were locked from the outside. No handles. No call button. But a lot of cameras.

He starts to panick. Suddenly a large male nurse arrived out of no where and suspiciously asks what's going on. I calmly explain we would like to leave.

"That's going to be a problem" he says.

Now I feel like I'm in every terrible movie that has ever depicted a psych ward. 
My son is starting to hyperventilate- I consider joining him.

She finally returns and I sign us out.  She tells me I've made the right choice, that this is not the place for him to be. But there is no place for us to be. She looks at me and simply says " I don't know what to tell you. Good luck"

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.

independence is overrated

We were all painting when Malachi got up to get a drink. He accidentally poured himself a glass of flavored creamer , thinking it was eggnog and proceeded to chug it. He then threw up. Which made Ivan run away to avoid sympathetic puking, and violet hid and cried because she has a phobia of vomit . this is why independence is overrated. You want a drink? Ask mommy. I will get if for you. Violet is saying (in a small sad voice) " mom. Malachi grossed me out" We are now done with craft time.

today I ran for the #3.

this is for the 3 minutes that i could barely run the first time i tried. for how hard mile 3 is and for leaving it behind and for every 3 miles after that. for 3 positive pregnancy tests and for 3 times my belly stretched to hold them. for the 3 pairs of glasses that are on their way in the mail for my eyes that refuse to see what my heart knows is there. for the 3 miles ember endicott wants to walk in the woods . for falling in love 3 times more than most people get to. for the 3rd chorus. for getting in the car every day at 3:00 to pick up my 3 children and for the 3 minute walk to the car that feels so long when they are all watching . for 3 minute showers with the door open. for his pain and for the pills he takes 3 times a day. for the 3rd day in a row of 16 hour shifts. for my 3rd grade glasses. for 3 pants sizes. for 3 mittens and 3 kittens. for the 3 time-outs. for 3 different bedtime stories. for the 3 paintings that meant nothing and for the 3 that meant everything. for 3 years of being known. and for you.

write that down!

Nov 1st 2012 : At one point today I had to go out to the van to get something ( and leave the kids alone in the house for a minute) Violet stuck her head out the door after me and said in a frantic voice " MOM! Am I in charge??!!" oct 31 2012: Violet: " mom , do you think Gumball ( the tv show "the amazing world of ") is kind of in-prope-piate ( inappropriate) ?" oct 27 2012: " I want more hours in the day!" - Malachi oct 25 2012: searching everywhere for Violet's hat when she informs me " well mom, hats can't walk or run or hide..all they can do is sit on the floor" oct 21 2012: " I care about people's feelwings" - violet (4yrs old) oct 21 2012: Violet just brought me a tiny something on her finger saying " see that mom?" she had me pick it up and examine it before telling me " that was in my eye when I sleeped " ohhhhhh.. Thank you for handing me your eye-sleep little darling ;) oct 17 2012 Jesse: "is this what having kids is like?! I thought they were just going to be cute and small!" Me: " I know. Me too. False advertising " oct 17 2012 : Violet: " do people call frogs 'feminine'?" Me: " do you mean 'amphibian' ?" Violet: "yeah. Feminine. " Oct 16 2012:Violet just drew a picture of me ( huge) and Jesse ( small) and she told me it is a picture of me as a mom and daddy when he was a baby . A psych would have a field day with this drawing. oct 15 2012: Ivan: "Malachi! You only have ONE friend??!!!" Malachi: " yeah.. But I'm thinking about getting another one" oct 12 2012: Ivan is writing a story ( similar to Lord Of The Rings) and he made Malachi into a wizard in the story :) Malachi is totally THRILLED and keeps asking questions like " will I be in the end of the story? Awesome!" oct 10 2012: Violet : " mom, do seahorses have bones?" " what does it look like inside your heart? Pink squishy stuff?" " is Malachi quiet because he feels nervous?" oct 9 2012: Violet: "if someone squeezed a whole cow it would get flat . Right?" Tara Endicott: " if you were a super hero you would be " super-feeler" and you would be the WORST super hero EVER" Nina Schmidt: " and my cryptonite would be- EVERYTHING" oct 5 2012: I looked deep into Ivan's eyes and said " just so you know, mom knows when you're faking". we had a moment of sober understanding and that was all that needed to be said on that subject. he's coloring at the table and the Big & Small siblings are at school. Sometimes you just need a day to regroup in quiet. I'm ok with that. oct 4 2012: 6:30am: " mom.. I accidentally wet the bed. I'm really really sorry!!! ... It was your bed " ~ Ivan Nov 25 2012: Sometimes Jesse emails me from work : J:You're skin is white like a noodle. I am not like a noodle. My skin is red. Me: is this a love poem? J: haiku of love. Nov 24 2012 : Ivan has The Cold the worst so far. It's because he's the worst at blowing his nose. Just sniffs and sniffs and sniffs... Ugh . I feel ragey over it BLOW IT OUT KID!!! jUST BLOW THE SNOT OUT!!!! They should make a greeting card that says : " congrats !! Your kid finally learned to blow his nose!! " I would buy that card. Violet(4 yrs old): " what number are you now mom?" Me: "35" Violet: " whoa! That's a big number" Me: " it really is , isn't it"

why numbers don't matter

you know that person who says " I love to exercise! it gives me endorphins!" ? yeah. that's the person I imagine punching while I'm on the treadmill. I hate exercising. But I DO like to kick ass, and since I can't go about kicking random people's asses I kick my own. I'm most competitive with myself I guess. Which sort of makes me sound like I have multiple personalities ... for those of you give-er-uppers. for those of you who said " Oh I don't have the body for running" or " I have exercise-induced asthma" or " I would rather sit here"... here's a story for you. I was always the chubby one in the family. At age 9 I found out I had a hypo-thyroid. Meaning, my thyroid was sooo sleeeeeeepy *yawn* it could not be bothered.... so there's the chubby sibling syndrome..and then the thyroid..and then when I turned 21 - KABLAMO! hospitalization for acute pancreatitis. Triglycerides were 5,600. (the goal for trigs is 150) 5 days in ICU, two weeks in the hospital, 8 weeks of carrying around a backpack with an IV in my chest . No food or anything to drink for 8 weeks. not even a glass of water in 7 weeks. after countless diets and drugs and supplements and misery...we just kind of settled in to the fact that I was irreversibly screwed up.(physically! I mean PHYSICALLY!) even the drs were kind of like " yeah.....um...I got nothin' " at that time I was counseled to start exercising 1 hour a day (didn't happen) But this wasn't supposed to be a post about my pancreas, so forget about that for now. 2-3 years ago I was between 180-185 pounds. *gasp* A lady is not supposed to tell her weight! ok that's fine. I'm not a lady then. Because this is important- if you knew me 3 years ago you would not have guessed I weighed that much. It sounds really huge right? (this is one reason why numbers don't matter) so about 3 years ago I started running. I hated it. I am now up to running 2-5 miles 3x a week, pretty consistently for the past 2 years. 2 years ago I was wearing size 12 jeans. Yesterday I zipped up a size 8. EIGHT!!! a single digit!!! but here's the kicker- the scale still says 175. THIS my friends is why numbers suck. why you should not give them your time or your feelings. screw the numbers. my jeans ZIPPED UP. Did this change in 6 months? nope. it took me literally 2 years of sweating my ass off to drop a couple pants sizes and almost no weight loss (according to the scale) the happy news is, I no longer try to be in someone else's body (that's creepy) I am 5'3. I'm curvy. My belly grew three babies. My legs are muscular and can kick your ass. I can wear my clothes without feeling strangled. and My triglycerides have been 150 for over a year. Which is important. Because I need to be around for my kids, and I'm pretty sure the excuse of " it's too HARD!" would not stand up for them. it's hard. do it anyway. and ignore the numbers.

what love looks like

Over dinner Ivan asked Malachi why he flaps his hands. Malachi didn't answer, or couldn't? I whispered to Ivan that it was part of his autism .. Ivan nodded .. We Asked Chi again why he did it.. Did it feel better? Again he chose not to answer the why - Ivan quietly said " maybe he just doesn't like talking about his feelings" . He said it gently with a knowing look. I said he could be right.. Tonight as they were watching a cartoon I watched Ivan jumping and swinging his arms next to his big brother . That's what love looks like. Love doesn't say " come over here and be like me" love goes right where you are and stands next to you.

The Red Sweatshirt

i was wearing it the day i met that one boy... i was wearing it the day that boy proposed.. and i was wearing it that day when that boy called off the wedding. those are just THREE of the massive life-changing events that happened while that damn red sweatshirt was in circulation. you'd think i'd just throw it away. but i didn't. i haven't thought about it in years and years..i didn't think about where it went or why i stopped wearing it today it showed up. it just ..showed up. you know when you can feel a storm coming? ......................