Friday, December 13, 2013

Christmas 2013

Christmas is always such a bittersweet time of year for parents that have kids with autism. Do you travel, stay home, bring your own food, go to a mall, visit Santa...and what kind of present to get? The anxiety of all of it can be overwhelming, as much for the parent as the child. Sometimes I think I get too into my own head thinking about how hard it will be for Chandler. He loves Christmas trees, snow, and could care less about presents unless it is a case of pop tarts. I never gave it much thought, as we always had the same traditions in my family. My siblings and I would all pile the kids in our respective vehicles, and drive to Detroit Lakes. There would be a mountain of gifts with police caution tape around the tree. We would forgo the traditional turkey for a potluck with meatballs, cheese trays, 15 kinds of sweets, and an assortment of food that we would regret stuffing our faces with, as well as doritoes, so the kids were extra happy. It was hard for my parents to go anywhere because of my mom's MS. It has deteriorated her body to the point that she will spend her first Christmas in the nursing home this year. We were all too busy dealing with it for me to think about how it would affect Chandler. That scares me. I haven't yet explained to my kids that she isn't going home. For a number of reasons, I am no longer speaking to my father. How am I going to explain to my kids that we aren't going there for Christmas? No matter how we try to fake that Christmas will be "just as fun" because they all get to be together, things are changed forever. I have to somehow find a way to accept it, and move on. It's never easy letting go of a part of your life that was such a dear to your heart tradition.

Tuesday, December 3, 2013

All that for a coffee?!

Chandler is terrified of Scheels. Unfortunately, Scheels is a sporting goods store on a main street where I live. It is a massive, looming sporting goods store that sits just north of where I turn to go to Caribou Coffee.   Today, he was quietly sitting in the bucket seat of the suburban behind me and to the right. At the stoplight, almost there. In the rearview mirror, I saw, in slow motion, the transformation of his expression. Complacent and calm to horrified, panicked....he opened his mouth and that fire alarm scream came out mixed with the beginning of meltdown noises and tears. I was in the left hand lane, with a RED RED arrow...I kept repeating "We are NOT going to Scheels. Mom wants COFFEE. COFFEE." at a volume over his screeching. His brothers in the back seat, one of them with his hands over his face, the other with eyes as wide as saucers. He began to shift the door handle furiously, and when that didn't work, down went the electric window. Yes, that's right. He was willing to climb out the window of my vehicle to escape his nightmare store that we weren't going to. I instinctively reached over to stop him, pleading with him to shut the window as the wind is sending snow into the car. I may have injured my shoulder trying to do this. GREEN ARROW. I floored it. He began to slow the panic as we passed Scheels and got further down the side blocks to a more residential looking area, rounding the corner to where Caribou sits. I ordered in the drive through, and my heart slowed down as I was waiting for my extra hot, quad shot, skim, holiday peppermint mocha with white chocolate, non fat whip, extra beans...I pointed to the sign and reiterated to him "COFFEE"...and he was smiling, and bouncing up and down in his chair, quietly repeating "coffee....coff..eee"....Was it worth it? For that first sip.....Caffeine seeping into my bloodstream....tears from my eyes...never a  dull moment...

Sunday, August 4, 2013

Sex and the Single parent (for single parents living with a child with autism)

Warning. Possibly, probably  offensive and controversial blog. Are you still reading this? Okay. So, my  child with autism is from a previous marriage. I refuse to get into statistics and whether or not I think that the studies on divorce rates are accurate. I have seen people get into arguments and say people are too quick to blame the autism for your relationship troubles. That is not what this blog is about, so feel free to debate or research it. So, what do you do when you are a single parent with a child on the spectrum? Taking knitting classes and get some cats. OR you might find yourself in the dating world once or more than once. Especially when you are using respite care for Friday night trips to Wal-Mart.
These are just MY OPINIONS. Don’t take my advice and then get mad at me later.
Things you SHOULD DO:

1) WAIT!  Don’t date if you are lonely. Date only when you are ready. Otherwise you will end up in crappy relationship for the wrong reasons. Sex with people you think are hot, is fine. No attachment. Or you will jump from relationship to relationship hoping the guy will change into something you want. He won’t.

2) Take care of you. Go to the salon for a pedicure. Yeah, I know, money right? Go to the spa school and use your old college student ID and save another 20%. Order Chinese and watch chick flicks like Bridesmaids and Romy and Michelle’s High School Reunion or nostalgic feel good movies like The Breakfast Club, or powerful standing up for what you believe in movies like The Legend of Billie Jean (starring Christian slater before he was hot), or watch Magic Mike and rewind the scene where he does “Pony by Ginuwine”, do that after you have a bottle of wine and some batteries. Do NOT watch sappy love sick garbage like Twilight or anything relating to Nicholas Sparks.  Take a pole dancing class. Start a wine Wednesday, flirt, dance, be a woman, not just a mom.

3) Don’t Settle. If the person you are dating doesn’t understand autism at first,  that is okay. But not wanting to learn, or saying things that make you feel like they don’t understand that you and your child are a package deal…RUN. 

4) Clear out the baggage. If you find yourself in a relationship with a partner that doesn’t understand autism, you can do two things. Educate them or kick their ass to the curb.
Ladies, here are some songs to help you through that relationship that you think MIGHT get better. These are just a few of my favorites to help you get through getting rid of the non committer, the cheater, the abusive a-hole, the conceited selfish one, and one you already know the relationship is over with.

Red High Heels (Kellie Pickler):
Premise: Non committing loser that can’t decide you are the best thing that has happened to him. So she goes out looking super hot in cute shoes.
Best Line: “ You thought I’d wait around forever, but baby get real. I just kicked you to the curb in my red high heels.
Best Days of Your Life (Kellie Pickler:
Premise: Cheater that downgraded! He now regrets it because you kick ass, and she is a whorey shot girl at (insert random 20 something bar).
Best Line: “ Take a look at her and do you like what you see or do you wish it was me?”
Fighter (Christina Aguilera):
Premise: Guy was a huge jerk, probably abusive and/or controlling, and she is done with that mess. Stronger for it.
Best line  “Time is up, cause I’ve had enough.”
Survivor (Destiny’s child):
Premise: She leaves the conceited one who thinks he was better than her, but not only is she surviving, she’s on top of the game.
Best line” After all the of darkness and sadness still comes happiness.”
Blow me/One last Kiss (Pink):
Premise: Hanging onto a dying relationship and she realizes there is nothing left.
Best line: “I’ll dress nice, I’ll look good, I’ll go dancing alone, I will laugh, I’ll get drunk, I’ll take somebody home.”

None of these guys are good for you or your family. Your child is THE most important thing. Not all of us can find someone who understands your child’s meltdown over pop tarts, your freak out over the new meds or respite hours. Even if you do, they may never really GET it. If (by some miraculous twist of fate), you meet THAT one. The one you connect with, who loves you for you, who understands and treats your children like their will still have bumps in the road, you will still disappoint each other, you will still hurt. But appreciate it, hold onto it, don’t take it for granted. Don’t run from happiness. Don’t look for every excuse, and analyze every tiny issue.  We are all human, we make mistakes.  P.s If all of those songs fail, Listen to Dr. Dre and Snoop Dog “The next episode”, and pretend you a gangsta bitch. (From the whitest girl you know.)
Hang in there girls.  Nicole

Thursday, June 27, 2013

-Hacked by my teenaged son

Hello, my name is Luke Hillerson. I happen to be the teenaged son of Nicole Haisley, 36 year old divorcee and self-titled philosopher. I don't have an incredible amount of things to type, but I figured that I would take the opportunity of an open blog page sitting in front of me in the living-room. As a result of growing up with an interesting duck like my mother Nicole, I've learned a few tips about mothers to share with anyone willing to read. Next to me I have Sami Watkins, and together we've compiled a list of things to avoid when dealing with the key "female-authority figure" in anyone's given life.

-Making a Mess
I've had a difficult time with this throughout my life, being a forgetful individual by nature. If you end up making a mess, just blame it on someone else, and make sure that the lie is nearly untraceable.

-Talking About Chicks
Mother's don't like to hear this stuff, and frankly us teenagers don't like to hear about their love interests either. If you're looking for an uncomfortable conversation, by all means, go for it.

Now this one is give and take, because my mother doesn't have any particular irritation with cussing, as long as it's in moderation and not in front of the little ones. Make your own judgement calls.

-Picking on Younger Siblings
Unfortunately, every one of us is programmed to do this at one point or another. Just make sure to do it while they're not at home, or you could be looking at the big-ring hand coming right at you.

-Messing with their Stuff
The blog I'm writing hopefully slaps you in the face with irony on this topic

-Being a Sloth
For some reason, mothers find it that it's not in our right as human beings to lay around and eat chips all day on the couch. When you find the logical arguement to this, let me know. I've been attempting to figure it out for years.

The difference

(this true story brought to you by American Early 90s swedish pop)

Summer 2013:

June, 87 degrees....

I am sitting on a grassy hill with a water mist gently spraying my browning skin...headphones on and the Beatles are singing "Lucy in the Sky with Diamonds", sunglasses up on my head...Elliott sits behind me with his back against mine eating a slice of pizza. I tip my head back to hit his, and he says we're upside down. He giggles. Sawyer is running around and around a young tree. They are shirtless. Chandler is galloping among the sprinklers, he is grinning and his hands are flapping wildly. Sawyer begins to pile flowers he is picking on my lap, leaning over to kiss my cheek. Elliott gets up from his picnic, and catches my eye and smiles, and he runs off to join Chandler. The breeze feels good, and my body posture is relaxed, open, I'm stretched out in the sun. This might be the perfect day. Tears fill my eyes...

Summer 2012:

June, 90 degrees....

I am sitting on the deck. My sunglasses are on, my headphones are on.. Oleander is singing "Why I'm Here"...Chandler is sifting sand through his fingers. His brothers are sitting in the shade shadow he makes, silently driving cars through a path of sand. Sawyer is driving his car around and around. It feels scorching and the air is stuffy. I'm sweaty, and irritated. No one is talking. Chandlers fingers make flipping motions, flicking the sand everywhere. He stares at me for a bit. I smile at him and he looks down. My arms are around my knees, and my body is small, closed off.  Tears fill my eyes....

Wednesday, June 19, 2013

36 things I don't regret.

Normally this is a blog about my son, autism, and the ups and downs. I would say this is very relevant. I am turning 36 today. That means I have had ten years of autism under my belt, a degree, several jobs, relationships, and a plethora of turning points, learning moments. But the one thing I don't have is regrets. I have read all the blogs saying 40 things I want to do by 40, bucketlists, etc. I don't have a bucketlist, nor do I really want one. Instead I have compliled a list of 36 things I don't regret.

#1 Not selling out in high school.
I was always one to speak my mind. I remember one chemistry class where some male students were teasing an unpopular girl about how much she liked one of the "jocks", until she had tears in her eyes and I couldn't take it. I told all of them where to "stick it", and honestly, I have no idea if she remembers it, where she is, and I may have lost some "friends". I took the crap instead of her for the rest of that semester from those assholes, but I see so many people just stand  there while others get bullied. Don't do it. Even as adults.

#2 Getting addicted to coffee.
I love Starbucks, I love Caribou, Dunn brothers, and mochas of all kinds. It was an acquired taste, and I have found out of the way little coffee shops cleverly hidden in Vegas, California, and Mexico, and its an adventure in caffeine. It helps me stay awake, and get things done without speed or crack.

#3 Risking looking like a fool
I sing in my car. Loudly. I talk to strangers. I dance with my kids. It feels like life, and I won't stop doing it.

#4 Bartending
I don't want to hear anyone say its for men, or its a bad job. I learned more about people and psychology, and how to be a bad ass and take even less crap than I did before. I got to pick the music (and I often picked Kenny Rogers The Gambler to piss off the blackjack dealers and make me laugh), make good money, and learn how to make a cement mixer and people watch. Truly glorious job.

#5 Staying in Fargo
When I was in high school and college, computers were very up and coming. Yeah, I'm old. I liked a class called "Hypercard." I made a little tropical bird walk across ice and fall in, I thought I was an art and computer god. I wanted to work for Pixar and move to California. My life is different than that, and I like North Dakota. I like open country, small towns, and fresh air. All the things I hated as a teenager.

#6 Wasting time in elementary school and junior high learning the lyrics to all my favorite songs.
I still do this. I used to make mixed tapes, and call radio DJs. (I still do that second part too. :) Music is therapy. It makes you feel anything you let it. It takes you a milllion places, holds memories, changes your mood. Learn the words.

#7 Spending money.
Yes, I could have bought less shoes (not my snakeskin red and black heels from Rock Republic) but none the less, I love them. I love clothes, I love coffee, I love telling my kids they can order the giant brownie earthquake sometimes, but most of all, I love vacations. Memories are more important than things. I would not trade a saved million dollars for all the stories I have.

#8  Marriage number one.
Notice I didn't say divorce. I do not regret the relationship. We are still "friends". We have an amazing teenager. Ex is married to an awesome lady with great kids, and we were too young. We learned to grow up fast, and how to parent.

#9 Leaving toxic friends behind.
Some people make you feel bad, period. They are draining, they are tiring, and they take more than they give. Cut them out of your life, and you won't look back. I'm sure I have been that person at times, and if people cut me out, they were probably right to do it.

#10 Blogging
It's therapy. Yes, its personal. Yes, you will piss some people off, but you will inspire others. You will get the words out you are holding in your heart and your head. You will learn about yourself, and maybe teach some a few things.

#11 Bikini waxing
Damn they hurt, but you don't have to shave as often. They are embarassing, and less fun then the gynecologist, but I still go. Don't do it for your man, do it for yourself. It makes a few things more convenient.

#12 Serving
I've heard people say waitressing is demeaning. It's not. I made amazing tips, and I met numerous kinds of people, and had some great conversations. Everyone should try it once. I can also carry 15 drinks in heels.

#13 Speaking my mind.
Okay, this one was probably a really bad idea at times. Like when your thoughts come out too fast like word vomit, and you tell someone what you really should have kept to yourself. "I DO hate your friends." Comes to mind, but you know, honestly truly is the best policy. Keep it in, and it will become poison and I guarantee it comes out sometime later. I fight like this with ex husband #2, my dad, and my siblings, and it works for us. Three minutes of unleashing freak out, and we're done. All the cards are on the table, take them or leave them. Don't hold the trump card, it's not fair.

#14 Letting my kids watch inappropriate television or listen to Dre, Eminem, or Sublime..etc.
They will learn bad things in school. You can either watch with them, and talk about it, or they will make up whatever crap they want to. I'd rather be the one they ask.

#15 Marrige #2
When I was 22, video games and taco bell were cool. They aren't now. He still loves those things. But we are co parents of an amazing son. We have learned together how to take on autism and he taught me a ton of Marvel Comic Hero trivia. It's not easy.

#16 Tanning
I sometimes tan. I am sometimes careful. Everything should be done in moderation. I am with those that think a little sun improves the mood, especially in cold ass ND. Vitamin D also staves off MS which affects my family.

#17 Not becoming a vegetarian.
I like bacon. Enough said. And creatures of the sea, you are delicious with butter. I will gladly crack open your legs and wierdly colored bodies, and eat the insides. Sushi is my newest love, and welcome to the club.

#18 Facebook.
Yep, its a big time suck hole. But I know who married who from high school, I laugh at the funny ecards and delight in showing off my children to the world. If you annoy me, I delete you. It really is no different than watching TV, for the entertainment value, plus I can see the breaking news and that's faster than driving to the store to buy a paper. That wastes trees.

#19 Trying pot in college.
Yep, and my teenager knows it. All it did was make me want to eat the macaroni salad with peas and velveeta. I hated it once, I'd probably eat oreos now instead.

#20 Not always acting my age.
I still really like cartoons and cereal. I also like really sparkly nails. It's totally okay. If you are my age and you think its immature... You are jealous. I wanted to be Jem and the Holograms, and that is okay too.

#21 Supporting my LGBT friends.
I don't like politics. But this is one area where the Bible spewing crap needs to just stop. Unless you are crazy like Westboro, you have no excuse. You probably don't know any gay people, and you have never watched how creative the queens on RuPauls drag race are when they have to make couture from scraps in a dumpster. Way more talent than America's top model. Sorry Tyra.

#22 Law and Order SVU
Yes, mindless television kills your brain cells, but sometimes indulging yourself is fun. I would kill to be as cool as Benson on that show, and I am pretty sure I could cover up a murder now, or solve a case. The psychology behind it is intriguing, and I fully admit to seeing every episode ever made. It doesn't made me morbid or sick.

#23 Taking a job at a non profit.
No, I'm not going to be rich doing this. I am currently drowning in student loans but I LOVE my job. LOVE. That kind of helping makes you feel good, period. Tears, laughter, connecting, all of it on a level only families with children that have special health care needsd can understand. If you aren't part of this club, you miss out on another plane of life. Your perspective changes and you can never go back. Unconditional love and a lifetime of learning.

#24 Marriage #3
I took a deep breath as I typed that one. Regrets? Still no. Heavy billed divorce and huge emotional court battle. All learning lessons. If that didn't teach me how to get back up and keep going, nothing will.

#25 Random fun dating.
Nobody gets hurt. Off the top of my head, I can think of a few men that taught me very little. How to cut lemons, the shock value of being called another girls name, and how to use chopsticks, but without the wrong ones, you can't get to the right one. I know what I want and what I don't.

#26 Karaoke
You know you want to, and nobody is going to laugh at you. At least to your face. There is always someone worse than you. I love it. I will do that with my girlfriends until I'm dead.

#27  Working retail.
This job sucks. You put up with holiday lines, cleaning, stacking, and organizing tedious piles of crap. I worked at Pier One for awhile. But I learned how to make schedules, manage people, and sell things nobody really wants. No offense to Pier One, their stuff is awesome. But when you push credit cards, and little kitschy add ons, you know they don't really need that rooster shaped cookie jar, or the bejeweled napkin holders for New Years dinner. I also learned a few new Christmas songs to add to my beloved holiday list of music.

#28 Leaving my Christmas tree up until February.
 I love Christmas. Well, I love Christmas eve. It is nostalgia. It is my grandparent's house, and a huge small town church with candles, it is rice krispie bars dripping in chocolate, Charlie Brown, and snowmen, and my red boom box and Cyndi Lauper tape I got in 1985. The tree is a symbol of my childhood, and when my kids are gone with dad on Christmas Day or New Years and I'm alone, it is comforting.

#29 Watching the same movies over and over.
I have met a lot more people that say this is a waste of time. People that have a couple favorites, but say "I've seen that. There's nothing to watch." One of my favorite past times is quoting comedies with my siblings and my teenager. Laughter is such good medicine, and some of my favorite times involve us against them when it comes to movies we consider "classics". What do you mean you haven't seen Labyrinth? David Bowie as the Goblin King rules!

#30 Wasting time.
Life moves too fast. Some of my favorite moments are when I am doing nothing. Enjoy the sun. Play with your kids. Go for a walk in the rain. Don't believe me? Go to youtube and find Five for Fightings 100 years.

#31 Shutting my phone off.
Yes, I will miss the latest. I know how connected you have to be, but take ONE day and do this. It is freedom you haven't felt in awhile. It will SUCK for approximately two hours. Have a glass of wine, and it will go away.

#32 Wine
My girlfriends are all laughing and saying "Duh. Wine wednesday." Designate a day for girl time. Connect with your friends. Talk about sex, and how dumb men are. Venting is healthy when done in a good way. I have learned a ton about wine, and how to properly open it, serve it, and drink it well.  Thank you grapes for being awesome when you are drunk.

#33 Dancing like a freak at the bar once in awhile.
Yep, we judge. OMG, look at her! But sometimes that her should be you. Pull off sexy. Dance alone with girlfriends (not with random creepers), and let your inner Brittney or Lady Gaga come out. You feel sexy and feminine. But please wear underwear with skirts, and only ONE sexy thing at a time. Classy not trashy.

#34 Fashion risks.
My brother in law once told me he would never be seen in public with me in my lobster santa pants. Dude, they are comfortable when you have cramps, and I do not care. I also had a pair of earrings like Janet Jackoson in 7th grade. One key with hoop, one tiny gold  dot. Yes it was cool. So were jelly shoes, charm bracelets, flannel, and hot pink. I don't give a shit if its trendy. If I love it, I'm wearing it. I am not hipster, I do not follow the same drummer. Unique is beautiful.

#34 Taking advice.
Most people ask for advice and don't take it. Because it is not what you want to hear. So instead you do what you want anyway..Irritating the person you asked the advice from. We aren't really asking sometimes, rather, we are looking for validation. Wanting someone to agree with what we were going to do anyway. So try taking that advice you know is right. See what happens.

#35 Dating someone with kids.
Never wanted to. Said I wouldn't. I really thought I couldn't be fair to them, and that I would always secretly favor my own. Not so. And I get to do things like shop and have coffee, and having all boys I don't get much of that. Watching someone else parent their children and have amazing moments with them makes you feel a different level of proud and admiration. It's a very new experience, and I've grown to absolutely love it.
#36 Falling in love.
When you are ready, not lonely, it is THE greatest feeling in the world. If I had hung onto my past, kept walls up, or repeated past mistakes, it would never have been possible. I didn't really believe in true love, fate, or any of the cheesy, Hallmark type things that "those" couples you make fun of talk about. It takes the right person, and more importantly, the right time in your life to come together and turn you into one of "those", like the vampires in Twilight. (Yes I do regret watching that movie.)

Thursday, May 30, 2013

The Planner

Today is Chandler's last day of third grade. He was up at 4:00 a.m this morning. He's plugging his ears and jumping and smiling. I tell him we are waiting for the bus, and this is the last day of school. The bus comes and he runs through the warm, misty morning to get to it. I wonder if he will be confused tomorrow. I watch the bus driver wave to me, and the door closes on another year.
I sit down in the kitchen chair, and look down at the table. There is a school planner on the table. I pulled it out of his backpack last night. There's six goldfish on the front, and the middle one has a word bubble saying "Stop bullying me." Yesterday was the first time I ever laid eyes on this planner.
Before I finish this post, realize that this year was tough. His program at school fractured by staff turnover, miscommunication, and many, many meetings. We, as parents, have been assured things are on the upswing, everyone is looking toward a new start. But I still feel the sting of a year lost.
The first entry is October 15th, and it simply says he did well. October 16th. "He had one outburst in the gym, but it was as we were leaving to go to music therapy. It may have been the transition to music that upset him." October 29. "The bus came late and we got to class late, maybe upset him?" In November there are spelling lists. Crayon. Feather. House. Many reports of him being agitated and having to leave the room. Lots of Mondays. There are no entries in February. I find myself wondering who wrote this....a para, his teachers....One full week in April he was agitated. One day in May they worked on book reports. I have no idea which book. My eyes fill with tears, and I can't read anymore. All of these days this information could have been useful, I could have helped....I know I should be glad its a new start next year. I should be glad for all the progress and the collaborative effort that parents have been informed will be happening, but I quietly shut the planner and wonder....

Sunday, April 7, 2013

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.

Tuesday, March 12, 2013

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...

Sunday, March 10, 2013

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

Monday, February 11, 2013

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.

Saturday, February 2, 2013

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.

Sunday, January 27, 2013


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.

Monday, January 21, 2013


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.

Tuesday, January 1, 2013

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.