The Family Garden - Harmony in a Autism House

The other night Mike and I were watching TV and someone quoted the Buddha and the quote really resonated with me. Starting in college, I started reading Buddhist texts and felt as if the ideas hit home with how I felt about the world and life.

But this one is more about our family and Sage.

On Family Harmony

Hearing this really made me think about his behaviors and how our family is responding to them, and how that is feeding back into his behaviors. It made me wonder how we can work more towards harmony especially in the evenings.

It can be really hard when your son is scripting on, "Watch Nemo? Watch a movie? Mama watch the movie? Watch Nemo? Watch a movie on laptop?" for over 30 minutes. It would be fine if he would sit and watch his movie but instead he takes it out, starts it over, and continues to do this until I stop him. He doesn't actually watch the movie, he says, "Press play Mama? Which one you wanna watch? I press play? Press play?" Yes buddy, press play. "OK, press play? Press play Mama? OK!" to which he then does then clicks Menu and starts it over again.

He also has trouble with taking turns on the laptop which I also want for work. During the summer especially I work online. So when he's home, it's a battle for who gets to use the laptop. It's like I should just get him his own dang laptop but that's expensive and hell, he'd probably still want to take mine because I was using it.

Finding things to do with him and working with him to redirect him rather than telling him what to do (showing him where to get new undies when his are wet from water gun play rather than saying, "Go get new underwear out of the drawer next to the toilet") are both helpful in stopping him from having a meltdown, but around 8 p.m., it's as if there's very little to stop him from melting down. He gets something in his head and if it doesn't happen then it's a Scream Fest.

Baths, bed time, all of those interrupt his ideas of what he wants to do. We need to work on reminding him that there's something up coming ("Five minutes until bath time!" and set a timer so he knows). Keeping to a routine even when it's summer is important as well.

How do you attempt to maintain harmony in a home with a child with Autism? What strategies have worked for you?

A Week in the Life - Autism Parenting

Monday:
     Morning: Ugh, seriously, you sucked at sleep last night. Getting you up and dressed is going to be like poking a bear with a sharp stick. Yes we need to get out of (my) bed. (*NO!*). Yes we need to use the potty. (*NO!). Yes we need to get dressed. Go find your shoes. Put your shoes on. (*NO!) Grab your backpack and let's go to school. (*Don't wanna go school!*) Don't you want to see you friends? (*NO friends!*) - Gets to school and races ahead screaming, "FRIENDS?!" Parent is...confused but glad that he's going to be at school for a few hours. Go to work.
     Afternoon: Brace yourself for a sleep-deprived almost 4-year-old. Pick up child at daycare. He falls asleep in the car. You arrive home and try to take him out of the car without waking him. Don't poke the bear. He wakes up and insists you carry him to the house but hits you and screams NO the entire walk to the house.
     Evening: Screaming. Crying. Won't eat dinner (even after you offer waffles and strawberries, his current favorites). Falls asleep on the couch. Help oldest with homework. Huffing and puffing, this is boring, can we do this tomorrow? Carry youngest's 40-pound body to the bed to put on a pull-up instead of his undies. He wakes up and becomes a screaming mess. You lay on the floor and he falls on top of you and you rock him until his heart beat slows from 900 billion miles an hour. You finally get him to bed and he announces, "I need to go potty." Three minutes later he is snoring. You drink wine and feel emotionally and physically exhausted.

Dinner of champions

Tuesday:
Everyone slept well because they were so damn tired from not sleeping well Sunday night although you get woken up at 1:30 a.m. by the child coming to sleep in your bed. He tosses and turns and wiggles for 15 minutes before settling. You finally fell back to sleep at around 2:30 a.m. and wake up at 5 a.m. to shower and drink coffee before you deal with The People. 6:45 you bring them THEIR morning coffee (milk cups) and repeat Monday's morning process. "No want to get up!" Me neither dude, but look at me all showered and dressed and shit while you were still sleeping.
Go to work. Come home and nap because 7 hours of sleep in 2 days is wearing on you. Pick up boys from daycare. Drop youngest at home with husband and take older child to karate. Make sure you have snacks, drinks, karate uniform, and coffee. Child with Autism screams as you leave the house (because you apparently won't come back...which you have thought about..). "No mumma no go nooooooo momma nooooooooo"
Finish karate at 6:45. Debate picking up fast food or asking husband who is poor at multitasking (observing a child AND cooking dinner? that can be done?) to cook something while we return from karate (which takes forever due to construction). Discuss why there's traffic with 6-year-old (AGAIN).
Pick up dinner because husband can't find anything to make at the house. Dole out chicken and french fries to happy children. Breathe because...hey, nobody is screaming! Do homework with oldest. He complains and huffs and puffs. 7 p.m. Witching Hour. Baths. Screaming NO. Bed time early because older child is tired from karate and younger child is still off on sleep. Everyone is asleep by 8:30 p.m. Pass out and drool on your pillow (until 1:30 a.m. when child arrives in your bed again).

Wednesday:
5.5 hours of uninterrupted (i.e., you were kicked and shoved all night but the child didn't wake up and try to chat with you or watch TV at 3 a.m.) sleep! Glory be! Check your schedule. Work but NOBODY HAS ANYTHING THIS EVENING. Repeat Monday morning routine. Older child is getting better at trying to help youngest stay on track (but you wonder constantly if you're doing a disservice to neurotypical child because you have to focus on child with Autism so much - vow to spend more time with neurotypical child).
Home from work. Take a nap. Pick up boys from daycare. Cook actual healthy dinner. Only adults eat it. Older child cries until he is told he cannot have anything else because "this is dinner." Youngest throws his food at the dogs. Children basically do not eat. Eh, they have fat reserves.
Baths, screaming about brushing teeth, lots of "I need to potty" out of bed behaviors, and finally, sleep. Write blog post and daydream about sleeping.

Thursday:
Repeat Tuesday complete with karate and the possibility of fast food. Tell husband to make leftover spaghetti instead. Children eat as if they haven't eaten in days (wait...well...). Both fall asleep on the couch at 7:30 p.m. Parents debate leaving them there for a while because...it's quiet and they can actually talk to each other for 5 minutes. Wake up children for baths and bed. Make sure oldest has finished his weekly homework (due tomorrow) and force him to finish it if it isn't complete. Decide baths are not necessary and hustle them both to bed. Did they brush their teeth? Can't remember. Tired.

Friday:
Repeat Monday's morning routine except you get to sleep 1 hour later because you don't have to be at work until later on Friday (so you can come home and shower after dropping boys off). Actually apply makeup without "assistance," anyone taking your shit, or anyone asking what you're doing. Dress and go to work leisurely. Daydream of a time when you had no children. Then the school calls and tells you that older son fell on the playground and hit his head (or insert another reason for call here). You pick up son and bring him home to rest. Work productivity = 10% when expected was 90%. Finish required work and read 5 pages of leisure reading book while child watches Transformers. Feel guilty because there are dishes to wash and there is laundry to fold. Take nap with older child (which is actually really nice because he's a solid sleeper). Drink coffee and steel yourself for picking youngest up. Grocery shop quickly - make sure to get pizza, coffee, and coffee creamer, because, you know, priorities.
Pizza night for dinner - family and friends come over for pizza and relax with beer and wine. Leave the room often, leaving children with unsuspecting family and friends while you breathe and try not to scream about children who are fighting over a toy and still haven't learned to share. Youngest's "MINE!" is a shrill scream. It's lovely. Husband forgets the fact that children still need to go to bed because he's spending time with friends, and doesn't bathe children (which is his job). Children end up falling asleep on the couch after being bathed at 9 p.m. It would be so nice if going to sleep later meant sleeping later, but, you know, HA. Friends leave, thanking you for the free birth control (i.e., hanging out with your kids). You got it! THIS COULD BE YOU.

Saturday:
Wake up at 7 a.m. with youngest who is all about watching "Toy Story videos" on your laptop. As long as you let him, he will be entertained and you can drink coffee, have breakfast, and even relax a little. But you know that when you want to do some work later there will be a disagreement over ownership of said laptop. You contemplate taking children out to do XYZ in the neighborhood but worry that youngest will melt down in public which makes you anxious because it happens often. Decide to stay home because he has already melted down twice this morning over what seems to be nothing. Children begin chasing each other around the house, screaming. Look in the mirror and see a Mombie (i.e., Zombie mom). Oldest is crying because youngest threw something heavy at him. Put youngest in time out and soothe oldest. Start at "Children begin chasing each other" again...go for at least 5 or 6 times before lunch. Try to read books or some enriching activity. Sometimes they participate.
Make lunch. Maybe if you're lucky, a friend comes over to babysit in the morning and you can either a) nap or b) get some work done on your tablet (which is a pain in the ass, but taking the laptop back is poking the bear). Nap while children nap. Make 3 different dinners because nobody seems to want to eat what you had planned for dinner (and it's not pizza or chicken and french fries). Nobody is tired at bath time because they took naps (which they don't usually do during the week). Push bedtime back a little bit because nobody wants to fight with them (and they will literally just keep getting up if you make them go to bed). Feel like a crappy parent. Realize tomorrow is going to suck because they WILL be up at 7 a.m. again. Drink wine. Watch one episode of a TV show you wish you could catch up on and hope that Hulu doesn't take the episodes you need down before you get caught up.

Sunday:
7 a.m. they are up and chasing each other. Husband sleeps until 10:30 a.m. at which point you send child with Autism in to wake him because...otherwise he might not live to see Daddy when Daddy does wake up. Youngest has been repeating, "Eat donuts? Eat donuts mama? Mama, eat donuts? Donuts mama?" for the past 3 hours. Usually Daddy gets up and gets donuts on Sunday.
Consider day drinking.
Children watch TV or "Toy Story videos" on the computer. Lunch is a burned pizza (for some reason the Sunday lunch pizza ALWAYS gets burned). Naps. Feel guilty about not taking boys out of the house yesterday and so you bring them to the park after naps. There's nobody else at the park (you don't live in an area with a lot of kids). Oldest complains there's nobody to play with. Then another kid shows up. Youngest has had his fill and wants to leave but now oldest wants to stay and play with this kid he doesn't know. Sit in the car with youngest for a bit so oldest can have a chance to play with another kid (like, you know, a normal kid whose brother isn't having a meltdown in his car seat). Google all-inclusive vacations for you and husband while youngest screams and oldest plays. Give oldest five-minute warning. Take children home and make sandwiches for dinner because everyone agrees to eat them (but then youngest doesn't, oldest eats his sandwich even though you told him not to, and youngest returns to find he has no sandwich). Cue Sunday Night Cry from youngest. Cries until 11 p.m. (even though they went to bed at 8:45). Go in the backyard and mutter, "WHY WON'T YOU JUST GO TO SLEEP? YOU NEED SLEEP! WE ALL DO! JUST GO TO DAMN SLEEP!" until you feel slightly better about dealing with a wound up, upset, almost 4 year old. Finally say screw it, and take him to bed with you because you want to go to bed and he's still up and crying.

Googling beachfront vacations...with no children.

Enjoy your Monday!

**Stock images from Unsplash - check them out for gorgeous photos!**

Cue Mama Blood Boil - Yes My Son Has Autism

About a week ago I took my two sons to a celebration for a local company. They had a small bounce house, food vendors, arts and crafts, and even a snow cone truck. My sons were in heaven.

But I will tell you as soon as Sage saw the bounce house, it was on. And I had to drag him out an hour later.

Sage is almost 4, and he has Autism. If the diagnosis of Aspergers still existed, he would be diagnosed with that, but it doesn't, so we're "on the spectrum." I say "we're" because if you know a family with a child with Autism, you know it affects the whole family. His social skills are at about the 3-year-old level, and his language skills are getting much better - when he started school in August they were well below the 2-year-old range, and now we can have a conversation (even while it is generally scripted and repetitive).

That morning I really didn't know if going to this celebration was a good idea or a bad idea. Traveling with Sage can be...surprising? That's putting it nicely. I never know what's going to happen - if he's going to have fun and tell me, "I happy Mama!" or if he's going to meltdown and turn whatever get-together we're at into a screaming mess.

So I don't go out. Most weekends we stay home because...I don't know. And you may be thinking, "Well, let him try." And I totally get that. But the aftermath of a Bad Day lasts for days, makes his anxiety shoot through the roof, and sends me looking for Xanax. Or wine. Or both. My husband reacts with frustration to Sage's meltdowns, and I end up trying to mediate and console them both.

Yayyyyyy.

Anyway. That Saturday I had had enough of being in the house, the boys were getting on each others' nerves, and that was getting on my nerves, so we got dressed and went to the park. We parked it for about 30 minutes until Silas (6) told me, "I wish there were more kids. This is no fun." Totally true dude. I get you. We were alone at the park. I decided to head to this celebration and see what happened.

On the way over there I told Silas where we were going and that I was HOPING that Sage would have fun - but he knew the drill if Sage was melting down, hurting himself, or started hitting/lashing out to others. And he does. This has become our reality.

Bounce house. Right.

We get to the celebration, park, say hello to the owners, and the boys are in the bounce house. There are volunteers at all of the stations helping the kids. The woman at the bounce house was good with directing the boys (there was literally 6 boys in the house at once, all jumping into each other in a big pile of boy madness). At one point Sage started coming out and going back in like this was a game.

Sigh.

"That's OK," she told me, "I've worked with adults like him before. It's repetitive."

What you got lady?

Apparently she used to work with adults with developmental delays and disabilities. She said she recognized right away that Sage was different and that he had high functioning Autism. She asked me some questions and then told me

"Don't worry, as an adult he'll be able to live on his own and have a job like at the grocery store. It will be good for him."

I'm sorry, what?

Now, side bar. I have nothing against adults who work at grocery stores, adults with developmental delays, anything like that.

But to tell the parent of any 3-year-old that eventually he will be able to live on his own (I certainly hope so!) and hold down a minimum wage job is like...I don't even know what to compare it to.

Or maybe he can be a physicist.

You're saying at age 3 you can predict that my child, ANY CHILD, will be able to do service work of minimal cognitive effort for a career?

So...I kind of went off on her. "Oh, I certainly hope that he'll be able to go to college and find his dream career, but I doubt it will be at a grocery store. Unless he's managing it. He's very good at keeping everyone on schedule. Do you watch The Big Bang Theory? I imagine him as similar to Sheldon as an adult. And he's what, a physicist?"

Then I went and sat down while Silas went to the art table and Sage kept jumping.

Oh I forgot, you know one kid with a developmental delay, you know them all. And adults too. My bad.