Autism...You don't get to choose your own ending...

Some days life just runs its course. You don't get to choose the ending. On particularly bad days, you can just log onto facebook for an infinite amount of inspirational sayings, and hopeful quips for people having those fantastically, awesome, sunshine filled f@#%ing days! I, on the other hand, enjoy the quote that says "Your inspirational posts have inspired me to unfriend you!" As an autism mom, it also doesn't help me to hear, "Well, MY child did...", or "If you think THAT's bad.."...I don't want advice, and I certainly don't want you to "one up" me. My crisis is just that...MY crisis.
Yesterday started early with a trip out of town for a work board meeting, and two cups of coffee in, I had begun to switch gears, think about organizing my files, ideas for fundraising, advocating, and my humanistic, idealogical gears were just spinning. Motivated and excited on the drive home, I let my mind wander to leaving work at the door. I couldn't wait to relax. A night off! You don't get to choose how this ends. Upon arriving home, I could see my children were still alive, cookie crumbs littered the kitchen table, my teenager and a friend staring blankly at the television,  toys scattered here and there, the garbage overflowing with Dr. Pepper bottles, macaroni and cheese boxes, and something red from leftover lunch spilling down the side. Teenagers suck at multitasking. Rolling my eyes, I went to survey the damage upstairs where the boy's bedrooms and bathroom are. It took me three seconds. Three seconds...To go from annoyed to a sickening, overwhelmingly painful sob. Chandler had indeed been busy. His mattress was waterlogged, a green bucket lying sideways on the floor. My hand touched the mattress, the bedding, the piles of formerly clean laundry, the carpet.....I sank to my knees and bawled. I had returned the carpet cleaner just a few days ago after the last water episode. Autism children are attracted to water. They love it, how it feels, how it sounds, how it looks. Swimming, bathtubs, rain, puddles, all of it. It can be a great sensory experience, and my worst nightmare. I stood up and turned to see him in the doorway as I was ripping the sheets off the bed, I screamed at him. Screamed. "Chandler, WHY?! STOP THIS! DAMNIT WHY?! NO WATER, NO! NO WATER!!" His expressioned darkened, brow furrowed, "NO!" he yelled back, running from the room. I  I blew up at my teenager for not watching him more closely. I paced, as tears streamed down my face, and I called Chandler's dad and screamed at him, going up at the down the stairs with no particular direction. When my body finally started to slow down, I walked back upstairs and opened the door to the other bedroom. God no. My foot stepped down into and icy, soaking carpet. I pulled a pile of wet comforters and clothing from the floor, dripping wet and let it sink. My mouth opening to say something, and a little sob escaping, picking up a wet pillow, then letting it hit the floor with a sickening thud. I couldn't breathe. This is the part where I felt like losing it. I shut the door.
I can't tell you when in this time the boys all seemed to disappear to other rooms. Maybe it was the impending doom they felt from my freak out..but I was in a fog when I came downstairs and didn't see them. My journey back to sanity was eased by the fact that this amazing person had showed up to make sure I was dealing with this meltdown. (Mine, not Chandler's). Now, there is something to be said about the way autism parents understand each other, but unless you are one, you simply cannot grasp the connection of not having to talk. Not having to explain with words. Expressions are enough, being held is enough. Being picked up off the floor, literally or metaphorically. Words of support that follow hitting home so hard you can't speak. Not being embarrassed that your life is splintered at that moment, that you can't talk because you are choking on sobs. But that other person's presence is so comforting that you feel your very soul is safe in their care. That all your raw, and real pain can come out and you don't mind being that vulnerable. They remind you that you are not a failure, that you are stronger than you know, and that again you will get through, pick up, and move on. This isn't the ending, its a new chance at another beginning.

These muffins suck....

Autism parents know the feeling of getting a text or a phone call saying your child is having a meltdown. We nod, we breathe in, our expressions move quickly back and forth between concern, understanding, determination...we know the panicky feeling of trying to get there as fast as we can, of talking to ourselves in the car, of dialing furiously...Major panic is when he has escaped. Minor panic is when he is in meltdown mode with someone besides me or his dad.
Tonight when I get home, he is red faced, with his snow cap and shoes on, he is howling, and gesturing. He throws himself into the kitchen chair and I squeeze him. His whole body falling against my shoulder. I can hear the desperation in my voice matching the pitch in his. "Please tell me..., What is it...What do you need baby...Tell Mom..." He tries again, and again.."Oran...Ore...Oran..."  He attempts to put his jacket on, and I tell him we aren't going anywhere. He howls again. He lays on the kitchen floor. I bring Gweneth over, and it helps for awhile. He puts on gloves and furiously pets her. "Lay down, lay down", he tells her and they do. He is calm enough for his ragged breathing to slow....He turns over and lays face down on the floor. I ask his respite caregiver what happened, and while we are talking I make the mistake of trying to repeat what sounded to me like "Orange". His head comes up and he glares, then the fever pitch scream...Shit....
His staff goes to the store for his beloved mini blueberry muffins...Meanwhile, I try having him call his dad, and I can hear him trying to calm Chandler down. Asking him questions, trying to decipher like I did...I am shaking my head slowly out of frustration. He lays down on the floor again, and I take the phone, telling his dad we are going to try muffins for calming.
When she comes back with the muffins, they are not the mini bite size pouches he has become so fond of these past couple weeks, they are regular size, and a different brand, in plastic. UNACCEPTABLE. Howl. Gwen is laying on the floor looking like I feel, in despair. I call dad back and he offers to take him overnight, so Chandler leaves with his caregiver, wiping his tears and shouting "Bye" at me over his shoulder. When he leaves, I drop to my knees, sobbing. I am so sorry I can't understand you sometimes Chandler. I know how frustrating it is to feel that desperation. I can see it in your eyes, and I feel all of it. I would give anything to take that away, to give you the ability to let me know what it is you need. We are working on it. Me, your dad, your staff, your speech professionals, your teachers, your friends....I promise you I won't ever give up. I will mourn this brief hurdle, and I will get back up, and try again tomorrow. A new angle, a new picture board, more time....we will get this. It's just one more piece to put in the puzzle...we'll get it...

A window in....

I love music. It's in my soul, I wake to it, I fall asleep to it, I live by it. It is a huge part of my life. Lyrics, and melody, and the way it consumes your emotions, your being. It changes a mood, it brings back a memory, it creates an element of anything that you wish. Anytime I am reflecting on anything, I find myself flipping through my ipod, looking for the feeling that I want to create. Sometimes I let the song choose me, and shuffle it is. Today I was looking. Changing my mind from one to the next. Chandler climbed up next to me on the bed and held out his hand. We locked eyes and he smiled. I handed over the iphone, and he was scrolling through, looking at me for help, and he said "Fun." It took a minute to register that he meant the band. He loves the band Fun. So I found the album and we play (to his delight) a couple of songs. Then I tried an experiment.
      I helped him pull up various songs and waited for his reaction. Different songs did different things. Recognition, delight, annoyance. I found out that he really likes Bruno Mars, Yaz (old one hit wonder from the 80s!), the Lumineers. Ah...eclectic taste like his mom. He does not like Rascal Flatts. And the Ting Tings made him recoil in horror. We both listened to the new song from Pink, for some reason the mix of those voices ( Pink with Nate Ruess from Fun) gave us both goosebumps. The smile of delight when they harmonize happened at the same second for both of us. What a beautiful thirty minutes of connection and understanding, and mutual happiness. I was in his world because this is a language we both understand. He probably didn't get the tears in my eyes, but I was lucky enough to stumble upon another way in. I will figure out a way on his ipad to make this functional, for him to be able to choose what he wants by looking at album covers. Any way for me to know my son feels like I shattered another window of autism. This one was a huge picture window.

"So let's set the world on fire. We can burn brighter than the sun...."   FUN

Why I hate snow days aka You ain't getting sh#$ done today lady...

Let's start with the fact that I KNOW that I live in North Dakota. I am fully aware that a blizzard warning can just come out of nowhere and wreck my day. Most kids (especially my teenager) sit anxiously by the television saying "Come ON SNOW day!" I, on the other hand, mutter under my breath "Oh no you better not, Mother nature, I swear to God..." We never close school here. If you live on the coast (east or west), when the first flakes fly, you are at Wal-Mart buying water, batteries, flashlights....I might be at the liquor store buying a second bottle of wine...And I may or may not think its a good idea to buy an extra gallon of milk. Yesterday was one of those times I chose not to...Well...I need to remember, that I am not just a resident of the land of arctic tundra, I am also an autism mom. Other than the fact, I had to use excessive force to shove the two foot snow drift away from my door, squeeze my body through the door and frame, and expend way too much energy clearing a one foot path so my dog could pee...Chandler and I had a great morning. He slept in late, meaning I slept in late. We hung out,  I ate cookies and diet coke  for breakfast, all in all, a great start...then I decided to clean the upstairs. I came downstairs after about ten minutes. He had been practicing his new milk pouring skills, and it was soaked into the paper towels, the cake mix, and the unopened box of pudding (mental note to self..put your groceries away..always)..No big deal, I praised him for trying, had him help me clean up the last of what milk we had, and got him some juice. Twenty minutes go by...I come back down to check on my silent son....who is now eating crackers he helped himself to, and there is a brand new French Vanilla ice cream melting on the counter with no lid....sigh..."Chandler, where's the top?" I ask. He walks me to the couch where it is...face down...sigh. Scrub, refreeze, wipe, sigh. "Ask mom for help, okay?" I get him a bowl of ice cream, clean up the mess, and I see his breakfast from this morning (granola bar, toast..) in the sink. Well, that's why he's helping himself to food. I decide a clean upstairs isn't worth having to also clean the downstairs, so I get out Candyland. He sits down, looks at me, and walks upstairs...alright, I'll vacuum...I start, and pause to hear the water running upstairs...I run upstairs to see that we have not only decided on a bath, but that all the laundry I was going to bring downstairs is now in the tub...floating, soaking, and Chandler is smiling, saying "Help."....How can I get mad? I can't. All I can do is scoop out the clothes, run the bath, and give up on having a day to get anything done. What I am getting done is some learning lessons with Chandler. Productive? Yes. Just not for housework.

Why I'm at McDonalds instead of Monster Jam...

I made a choice today. I decided to take Chandler to Monster trucks. I brought my nephew Noah along for support (for me and Chandler). Chandler is fond of Noah, and they are close to the same age. We gathered all of our necessities (gummi worms, ipad, headphones..) and we got there plenty early. We had great seats, and throughout all the preliminaries, Chandler was amazing. National anthem, check. Announcements, check. He was clapping, and excited, and he was looking and exclaiming "trucks!",  but when the trucks began to make rounds, he decided it was safer in my lap. Soon the headphones came off and ears were plugged...uh oh...My nephew, Noah, was oblivious to the impending meltdown. He was explaining to me what the equator means because he was holding the ipad while I struggled with the cord to my headphones. I plugged the headphones into my phone, and blasted Chandler's favorite song Some Nights by Fun. His heart rate slowed. When the engines revved at their highest, his heart beat almost out of his chest. I could tell he was trying, really trying. It wasn't JUST the noise...Why I didn't consider the vibration I won't know, but that's what did it. Tears began to form and fall, and I took him out to buy a soda. My autism mom freak out moment hadn't happened, but it was about to.....Holding his Mountain Dew, he wouldn't go back in. I stood there holding his hand, and he was calm-ish, but I couldn't take a step toward the arena.  He just froze. We sat on the floor....what now? A Fargodome staff approached me and she was so kind. She offered to sit with Chandler so I could go gather my nephew and our plethora of belongings. Thanking her profusely, I did a dead sprint to row Q. Noah didn't mind at all, in fact, when we reached Chandler he blurted out "Chandler! You did so awesome, I'm proud of you! You saw the Monster trucks!" (Tears filled my eyes) Yes, yes he did. And on the way out, they both giggled like it was some kind of conspiracy. Chandler said and signed "Loud". This experience had meaning for him.
      We were a block from McDonalds, so I decided to treat them to ice cream even in zero degree weather. And they had the playland to themselves, and I drank crappy coffee and put my feet up. Watching them, it hit me. A year or two ago, he was terrified of noisy children in this very playland. He was afraid to cross the bridge or even climb to the top. Tonight he was singing from the very highest point, and grinning at me through the safety net.
Parents, listen to me. Do not get discouraged when your child doesn't hit the milestone you want when you want it. Do not let feelings of despair burden you. What happened tonight was a success. It was. We went further than we ever had. We tried, we made it for a little while, and we turned the evening into ice cream and a sleepover. Now I watch Noah playing Super Mario wii, and chatting incessantly to his cousin who will occasionally smile. I am so proud of my nephew for being in tune to his cousin's needs. I am so proud of Chandler for pushing himself and trying. And I am proud of myself for trying something new, and not being discouraged. And handling it with calmness and a positive attitude. Your outlook will change the world for your child and yourself. Be strong moms and dads, and brave. You won't regret it. I promise.

Opportunities...

One of the most important things to remember when you have a child with autism is that they will only be a part of the community if you give them that opportunity. I remember how hard it was to take Chandler anywhere when he was three. Screaming meltdowns didn't make me want to take him to the gas station, let alone a restaurant or shopping place. I talk to parents with newly diagnosed children often, and it is a source of anxiety and panic for the parents as well as the child. And then, in mid turmoil in a public venue, you feed off of each other. The vibe you're giving off lends itself to your child and you meltdown together. I forced myself to breathe and work through episodes calmly for years to get to where we are. Take them anyway. Again and again. And again. Movies took me 13 trips, coffee shops about 10, and every other place along this journey countless, countless attempts. Do not say "My child can't handle this." Say "My child can't handle this today." And then try again. Today, we went to a coffee shop. We can do this easily now that he's ten. We order coffee, milk, and a chocolate chip cookie. We sit with my family and he only gets angry one time when our conversation gets animated, he covers his ears and yells. All I need to say is "I'm sorry we are being too loud." And we quietly resume. I see him watching the conversation when it's quiet, and he begins to lean in to me and hug me. Smiling he says "Hi.", and "Nice." I don't care that he is wearing his pajama pants, or his Cracker Jack T-shirt that is indeed inside out and backwards, but he did it himself. If people can see that you are anxious about your child, they will be too. I'm not saying let your child do what he or she wants in public, but if all the issue is, is simply a little stimming, some pjs, or an occasional yell...? This IS your normal, show everyone else that too.

Ten

I am the only person in the Dairy Queen Drive through tonight. It's ten below zero without the windchill. My suburban was pissed off when I started it. I am ordering three cones, and a milkshake. Though, he loves cake, we don't do cake for Chandler's birthday. I don't remember when we started this tradition, but we have to get DQ soft serve cones (Except Elliott who only will accept milkshakes with NO cherry on the whipped cream, he's my ultra clean child and cones are too drippy). We sing happy birthday in the car and Chandler giggles. I tear up for the tenth time in a day, and we drive home singing along to Ho Hey by the Lumineers. "I belong with you, you belong with me, you're my sweetheart..." I love this song. I love a lot of songs. Lyrics freak .com is in my favorites on my laptop. There are something about quotes that strike nerves in us parents that have kids with special needs. I see my autism parents constantly pinning them on pinterest, posting them on facebook. Inspirational, deep, or quippy things that grab on, then let go. Over and over. Most recently, one resonating with me is "Not all that is broke needs to be fixed....". This is true. We don't need birthday cake and candles. But why can't I always remember that it's okay? I don't think of my child as "broken", but I do see our situations that way at times. Having pizza one day a year with my ex husband, and we both try to get Chandler to play some games, and I try HARD, I tried to get him interested in air hockey. And his dad beats me 6-1 because I'm terrible at air hockey.  But when we quit trying to make him play, he began to laugh at us playing, and finally I give him the whole cup of tokens to shoot missles at sea planes, which is what he has taken to doing. I sit on the floor, and just enjoy him. That he is pleased. His dad buys the ball he wants instead of us trying to score 500 tickets for it, and its all fine. It's always fine. No need to force it, or fix it.
 Today is Chandler's 10th birthday. Ten. Double digits. Worry floods my thought process... middle school, puberty, guardianship, wills...I squeeze my eyes shut, and breathe. Let go Nicole, just LET GO. None of this is happening yet. Yes, your son is getting bigger, stronger, and you have days when the fear won't lessen, and when you want to protect him with everything that you have. And that can still happen. But there are these moments of clarity, when you realize that you are doing everything you can. And if you just sit back, and enjoy your child for the person they are, you begin to build a stronger love, a better bond. I don't have to do anything but be his mom, and that's enough. These last beautiful, hard, lesson-filled ten years I wouldn't trade for anything. Here's to the next ten....Happy Birthday baby. I'm so lucky to be your mom.