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.

The New Years Resolutions I always make...

I cannot take the stimming tonight. It's loud, and its continual. I am downstairs trying to watch a movie before I go to sleep. Some days his stimming overwhelmes my nerves. I feel like a terrible mother when I can feel my temper, and blood pressure going up. When I want to yell shut up! I don't. But the incessant banging on his bed. The anxious feeling that the neighbors might yell at any second, or knock on the wall, or come to my door. He's making that sound with his mouth like the girl in the movie The Grudge. He's making joyous noises, and I think if I just shut his movie off the overwhelming stimulation from it will help him quiet down. It doesn't. He keeps turning a new movie on. The complexities of wanting to hear your child's voice, and wanting to hear silence is almost too much. I want school to start again so bad I can hardly stand it, and tears stream down my face again. I feel bad he is keeping his brothers up. I feel bad that I can't help him.  I think Gweneth, his therapy dog, feels bad she can't help him either. So her and I sit and continue to try to watch the movie, with the sounds overhead breaking into the only two hours I have left before my fitful sleep. I had someone tell me that I don't take care of myself. I don't. I think I do, but then I just sit here. I'm too overwhelmed to do anything but cry right now. I am making a point to make an appointment for a massage. And I am going to make the new years resolutions I always make and that's 1) to get organized. Lists. Shelves, rubbermaids, whatever it is. And 2) to eat better and work out, and 3) to take more me time. (insert eye roll, or laugh, or crying here). I need to make resolution 4) Do not bite off more than you can chew....And now, for those of you who don't know....A lesson on stimming: Enjoy!


What Is Stimming?
Stimming is repetitive stereotypic behavior commonly found in autism, but also found in other developmental disabilities. This behavior may involve any or all of the senses in various degrees in different individuals. Several examples are listed below.
Visual – staring at lights, blinking, gazing at fingers, lining up objects
Auditory – tapping fingers, snapping fingers, grunting, humming
Smell – smelling objects, sniffing people
Taste – licking objects, placing objects in mouth
Tactile – scratching, clapping, feeling objects nail biting, hair twisting, toe-walking
Vestibular – rocking, spinning, jumping, pacing
Proprioception – teeth grinding, pacing, jumping        All of us engage in some of these behaviors occasionally, especially when we are stressed. However, your child may engage in these activities excessively so that they may interfere with learning or activities
of daily living. Individuals engage in stimming
as a way to self-regulate sensory input and manage sensory integration dysfunction. These behaviors may be excitatory (stimulating) or inhibitory (calming) with the result of normalizing sensations.

If the world ends tomorrow....

The twentieth night in my new house, and all is quiet. Me and the boys. We did a lot of Christmas shopping today. I love what I bought you. For Sawyer-a shiny red gameboy, because you aren't big enough for a Nintendo DS like your brothers, and a new MarioKart game. Your snakebite monster truck you have been asking Santa for over and over again, and a DVD of all your favorite monster trucks. For Elliott-the teddy bear you asked for. A funny gift for a rough and tumble boy, but this bear has a twinkle in his eye like you do. And a motorcycle game for your DS. For Chandler- a brand new bike, that you will hopefully learn to ride without training wheels this summer, even if I have to run alongside you until I wear the soles of my shoes out. For Luke-I'm not telling, in case you read my blog ;)
If the world ends tomorrow, I want to tell you how much I love you. Luke, my oldest, my smart and musical, witty teenager who I can't be more proud of. You make me laugh, and I love that we have musical road trips and pizza night when we shoot movie quotes back and forth. My Elliott, my kind and thoughtful boy who thinks of his friends first, and names all of his stuffed animals. My sassy Sawyer, who wears a batman mask to sit on Santa's lap, and asks me questions all day long like "Why is the sun so far away?, and "How much money is six dollars?" And my Chandler. My quiet, amazing boy, who sings and talks to me all day in his own way. Who asks his dad for "Powerbombs" when he's needing rough and tumble play, and who is never without a smile. A real smile not withholding any joy. You are my light, and my life. All of you. Tonight we made cookies together, and cuddled into the big red chair and watched Jack Frost. If the world ends tomorrow, we had us a time. I love you. Merry Christmas. Mom

Another short rant about food....

Chandler. Why don't you like more things? Why is it that I bought your favorite "Fat Emma" cookies, the puffy, sugary goodness ones with three layers of frosting and sprinkles, but this time they are in the shape of stars with BLUE frosting for the holidays and you won't eat them?!! You pick one up, smell it, nibble one corner and set it down on the table with your eyebrows furrowed and a slight look of fear. ITS THE SAME. THE SAME. I know, not your same. Not autism "same". YOU brought me the pudding tonight. The chocolate snack pack that I haven't bought for months because you quit eating them, and I open it for you and get a spoon, all excited that you want it. You take one bite, and then wipe most of it out of your mouth with your shirt, looking at me like you are irritated that I didn't tell you it wasn't what you were expecting. Now you have a dot of chocolate pudding on the end of your nose, and a big smear of it near your shoulder. And you simply say "No." and walk upstairs. I sink into the couch for the eleventh time today, see the dog licking the crumbs from the star cookie off the floor, and put my head in my hands.