Acceptance month

Ah..here we go again. April. Autism awareness month. After doing this for years I have mixed feelings about this. I wrote a blog post in 2014 called Autism action month. It was more a “do something besides wear blue and post on Facebook. I still feel that way. We have to do more. Our schools are still battling seclusion and restraint. We still have to pay attorneys to take guardianship of our children even if they cannot speak. We still face cut after cut for funding for Medicaid, school programs, vocational support, housing. And I’m tired. I’m tired of having to turn on “Advocate mom mode” before every meeting, every doctors appointment. I would be lying if I said sometimes the “feel good rainbow support mom” didn’t have an ugly evil twin sister who wants nothing more than Betsy Devos to fall in a black abyss. But we also forget during this month when we are so busy advocating to celebrate. Celebrating successes. I don’t mean the inspiration porn. My son won’t make the basketball team, he’s not a savant. But what he is...is amazing. He’s smart. His sensory system is not “off”. It’s different than yours and mine. He can tell if he can trust you immediately. He can hear sounds that I can’t pick up on. Smells and sounds and lights, taste and textures. They can assault his system but he also gets to delight in them. Way more than I do. The sheer joy of rainfall, vibrant colors, flavor explosions, emotions so strong they are tangible.  He gets to experience the world in an intense way and sometimes that’s so incredible I envy him. He lives by his time table, his terms, and how many of us get to say that? At times he is pure joy and love. He reminds me every day that he’s stronger than me. And I don’t mean because he can put me in a WWE move faster than you can blink. I mean because he constantly has to deal with a world that wasn’t built for him. And he still seems to persevere and impress everyone with how far he comes. He’s a great swimmer, he is a speed demon on his bike, he has perfect balance, he lives for peanut butter waffles, he thinks his big brother is the coolest and he is the kindest soul you will meet on this earth. I am so proud of you Chan man. You make my life so worth living and learning. Your lessons have given me a wealth of knowledge that most people don’t get in this lifetime. So while we all see the Autism awareness month ribbons, colors, articles, and posts, just remember that it’s bigger than that. Us parents do this all year, every year. And we get to celebrate the coolest milestones and we get a glimpse into a different part of humanity. Like some weird secret society that you are only part of if you live it. I don’t regret the puzzle piece tattoo I got years ago. I don’t view that symbol as my son “missing” something. I always saw it as my inability to understand, not his. My next tattoo will be directly across from that one. And it will say “define normal”. Because while we are so busy pointing out the “awareness and advocacy” part, sometimes we put the acceptance part on the back burner. Whatever step you are on in this journey, just remember we are all in this together. Don’t tear each other apart with comments and arguments. Leave the path a little easier for those behind you.  Not just the families. Our neighbors, our business owners, our schools, and our legislators. Maybe then one day we won’t need to highlight a month as a reminder. Instead we can focus on celebrating the differences and what they bring to all of us.

Notice me..

Everyone notices you. In both positive and negative ways . I used to be so afraid that people would notice, I wanted you to be like all the other kids. To play the “right way” at the park, to make little to no noise in the store. My motto was get in, get out, don’t be noticed. That was success. This weekend your little brother turned 11 and he wanted a hotel party next to the pool. I saw people notice you. I wanted them to. You climbed into the hot tub and delighted in the warmth, you felt the bubbles between your fingers and smiled at how beautiful the sunshine was coming in through the ceiling windows. You watched your cousins and brothers throw colorful beach balls and you made happy sounds. I knelt down next to the curious dad and his daughters and simply said “Chandler has autism, and he likes to take over the hot tub. Let me know if he gets too friendly.”  You are to be noticed. You are so handsome. You radiate joy and wonder. People are taken by your smile and your presence. One thing I never wanted now makes me smile. Rattled nerves are now calm education. I welcome questions, I love to tell people how gentle and kind you are, how you may not say much to strangers yet you are so gifted in reading people. I still hate when people say “He doesn’t look like he has autism”...but now I laugh and say “Well, yeah, it’s impossible to see his brain so..”  Young man, you have changed the way I approach people and situations, the way I perceive stares, and most importantly the way I respond ( with grace) to questions. Notice my handsome son, notice his balance, his energy,..notice his abilities, notice his quick peripheral vision, notice his engaging smile, and notice that he loves life without a care in the world and we have much to learn from him..❤️

Mother's Day

Mothers Day….I can’t give you the definition of a mother, not after all the different relationships I have seen and been a part of…But I can tell you a wave of emotion takes ahold of me when I wake up that morning. I am a mom of four, a step mom of 4 more, and  a piece of me is with all the moms I talk to and support. I am humble and in awe of the strength I see. The moms who fight for care, and medicine. That sacrifice all they have for their babies.  And all of my children have taught me a lifetime worth of lessons. And all of them different pieces. Strength, humor, patience, intellect, perseverance, humility, tolerance. Mostly unconditional love.

My mom got sick when I was 15. My early memories of her were many. She was beautiful I know that. I know a lot of people say that, but she really was. My friends older brothers walked by our house a little too much, my father got into arguments at bars over how many men stopped to talk to her. She had this quiet, modest beauty that is rare and stunning. She didn’t speak her mind as often as she should have. She put up with being a working mom when she so desperately wanted to stay home with my sister and I and my little brothers. She feels so much guilt over that but none of us were bothered by it.   I remember her letting us sleep in the back of the car with sleeping bags on the way to daycare at 6am, I can hear the country station she was listening. KYCK fm. She was singing John Anderson “Swingin”.  I remember her yelling at the daycare lady who made me honey sandwiches for lunch every day and refusing to bring me back. I remember her singing along with Stevie Nicks and Fleetwood mac vinyl albums, and making chocolate oatmeal cookies and buns from scratch that she covered with dishtowels overnight.  I remember her suntanning on the deck on the brown and white lawnchairs, and showing us her yearbook with the maroon leather cover.  I remember her carrying my little brother  on her hip at the waterpark in Rapid City, her packing Tato Skin chips and cheeto snacks and Shasta pop for the fishing weekends at the lake, and loving the animals at the zoo many summers. Always in the background, always wanting to watch horse movies and Steven Segal, and game shows. Making me cheez whiz toast when I was sick, and cream soda floats,  and always being silent when my dad told or asked her anything. I certainly got my endurance from her, and my tenacity. When she didn’t agree, she wasn’t loud or confrontational. She just went through life with an optimism and spirit that I have never had.

MS is a silent, horrible life stealer. The first time it scared me she was crying, and she couldn’t walk down the stairs. I was 15. I didn’t know why she kept screaming that she couldn’t walk. I didn’t know what to say. I tried to help her up, and I couldn’t. This was just a tiny sliver of what was to come. Watching her rollercoaster of health and emotions was harder than anything I can remember.  She was still mobile when my first son was born in 1996. She took him looking for frogs, and read Peter Rabbit to him, and told him he would be a cowboy.  Being a grandmother was and still is her greatest joy. She has 13 beautiful grandchildren now, and an angel baby with her namesake to be proud of. After Chandler, and Noah (2003), she was needing a walker, and eventually a wheelchair. By the time she met Brady, Elliott, and Ethan (2007), she had pneumonia many times, she had fallen and hurt herself countless times trying to move motorcycles, and care for herself. She didn’t want help.  She always said she was living out loud like her grandma Clara, who she called Grand mama. And she certainly had her Grand mama’s gumption. Even if she couldn’t make her doughnuts.  And by the time the youngest of the boys appeared, she would be a resident in a nursing home. At 57 years young. There is too much to put in this story about what went wrong, and what we didn’t do. I could talk about the hospice days with my aunts and cousins, the terrifying discussions with all the doctors that I listened to through a fog, praying she would pull through one more time, and watching the relationship between my siblings and myself dissolve, grow and change, and come back together with a new strength but adding to it a sad and distant somberness that wasn’t there before. But I can't stay there....

I will choose to remember the time she made my brothers Halloween costume (an M&M bag) from a garbage bag, the time she bought me the prom shoes with her money that my father said I couldn’t have, the time she bought a bright yellow bikini my father hated because she wanted to, the time she took away my tapes with the heavy metal music recorded on them because I would learn satanic things and told me to listen to Bob Seger instead, the time she bought me a cabbage patch doll for hugging my brother as our car spun out on an icy  I29 because she said “I saved his life” (Adam, you’re welcome), the time she taught me to put in contact lenses, the time she borrowed (stole) my lakeshirt sweatshirt because it fit her better, the time she let me bring home Muffin my first kitten, the time she beat my score on astrosmash on Intellivision, the time my grandma got me the same Barbie my parents got me for Christmas and I cried because I didn’t want to return one and make anyone feel bad so she convinced me they were twins, the time she vacuumed up my hair on accident, the time she sang at my first wedding, the time she laid eyes on my newborn boys, the time she had to cut her hair when it was too hard to curl anymore, the time she couldn’t come to my college graduation so she made me a card, the time she told me why my dad bought her yellow roses, the time she told me the story of not going to Prom, the time she told me what happened to her pet squirrel. I can’t fill 500 pages with the memories. But she gave me a lifetime of them, and a piece of moral compass, great skin, a fun sense of humor, and the ability to pick myself up after being knocked down again and again and again. Happy Mother’s Day to the strongest person I know. I love you, Mom.

 

Nikki

 

One foot in front of the other...

We are all doing the best we can. We really are. If that means we ignore the laundry, or cry at an IEP, or wear the same sweats for three days and eat cookies for breakfast...so what? We are survivalists of a different sort. Put me in the wilderness with a compass and some water and I will be throwing out the white flag in two days. (I don't like bugs, or peeing outside, or cold).
But deal me a hand that includes a bible of acronyms, a child who hates showers, eats five things, has me shopping on Amazon for special shoelaces and sensory sheets, who can outrun a cheetah, and is my height and four times as strong and I will show you strength I didn't know I had.
Most of you who know me, know that as my son gets bigger and stronger the very real chance of my getting (unintentionally) injured is real. He is learning not to lash out, learning to replace those behaviors. But it will still happen. Picking him up off the ground, avoiding thrown objects when he can't find the right words, running to stop him from walking behind a car that's backing up...Routine trips to the doctors office when he's terrified of shots..or afraid of lab coats...it's called hyper vigilant parenting. And it's stressful, it's relentless, it's draining and downright painful at times.
So what do you do? Self care? Ah yes, here comes more guilt! Yes, I eat a crap diet. Yes, I should get more massages, schedule me time, and date nights and learn to paint or some fulfilling hobby. I know the value of self care. I speak it, I preach to the choir. To the moms who say "I know, I know." You are coping. You are doing what you can with what you have. Don't feel guilty. Look back on where you started...it's a journey.
My April autism month advice to you is one thing this year. Do one thing out of your comfort zone. My personal challenge is this... I signed up for a personal trainer. Not for my summer swimsuit body but to protect myself from my child: to be faster, stronger, more flexible, and more resilient. Don't feel bad for me. It's  not sad. It's empowering. I will slowly build my ability to continue to care for my son. It will extend his time at home and (hopefully) lessen my stress.And  I don't feel bad for waitig this long. I couldn't take it on until now.  Could have, should have, would have...no!! I'm ready now. And will it be easy? No way. Will it be worth it? Of course. Slow and steady wins the race. Much love and hang in there.

Broken

All parents have tough nights. Nights where we want to check out, nights where we daydream about another life. One that's potentially carefree and in a different lifetime. Mine is one where I live in a studio apartment on a beach, and I paint, and cook organic, and give freelance consultant advice to large corporations.  I buy brie and fruit and use crocheted bags at the market. I have time to meet intellectual friends and discuss climate change and supporting the arts in school.
Tonight I tried to get a spoonful of grape Tylenol down my 14 year olds throat. See, if I want a gummi version (compounded medication at a specialty pharmacy) for his headaches, if will cost me $80 a bottle. I don't know if his headaches are allergy related like his dad's when he was young, or if he has a visual strain that is adding to the pain, or if it's stress related. All I know is he is in physical pain. He's non verbal. He may never be able to explain these physiological feelings to me. But I keep playing the part of his personal physician, of specialist, as sort of a health investigator... The denials for coverage keep coming. They tell me it's a convenience for me to cover this formulary of over the counter medication. They tell me we cover capsules, pills, tablets, liquids. Yes, you do. And all of those have been thrown up on me. All of those attempts when he was small, and I cried as I held his body down while his fought me with all his might while I jammed the little plastic syringe down his throat. As he grew older, the multiple adults it took to take him to an appointment for antibiotic injections when he had strep throat. Yes, that was covered. I cannot hold him down now. Autism has sensory issues he cannot help. It's not behavioral.  He cannot stomach the texture. The bitterness and feel of pills do not allow his system to accept any form of medication. Only the gummies he finds palatable and can swallow.
Convienence. For me. Tonight I offered a spoonful knowing he was in pain enough to keep grasping my hand to place it to his forehead. Enough times to get tears in his eyes, pleading for help. The first spoonful he tried and spit everywhere, the second he grasped my hand with such force he broke my nail.
Later when I was texting my nail salon friend for the millionth time "need a fix again please", I thought about the force it takes to bend a nail backwards and the searing pain I could still feel. As I made the appointment I could still hear him loudly verbalizing and trying to settle in to bed. We have both cried, both said sorry, and both still at a loss. He's now taller, and stronger than I am. I tried to hold him and tell him it was okay. I tried to feel better when my husband told me that he would be alright. This isn't alright.

Parent S.W.A.T. team

So, I love my job. I work for a non profit called Family Voices. We are national, but I work for the ND "branch". We are experts in services, waivers, laws, and all things related to having a child with a special health care need. The one thing I can't and won't do, is tell you what you should do. It isn't for me to decide. I will give you options, I will share resources, explain the boring jargon that you don't have time to pick through. I see you, your situation, and unlike others, I DO understand, and I do want to help. Your stories make me cry, I go to bed thinking about how I can help you and your family. I won't stop until our children are on an equal level with all other children.
So on my summer Tuesdays, I invite you and your family to join me. In my own home. I get snacks, I pull out toys, I vacuum, I turn knife blocks around, move candle holders, secure locks....but as prepared as I am...nothing could have prepared me for this week.....

Autism has a wandering rate of 80%. The number one cause of death in children with autism is drowning. I live approximately 9 minutes from water. I have a map of my neighborhood...and on this Tuesday, with NINE....9....adults in my house...a little boy, with black shorts, and no shirt on...found a way out...

We count, every few minutes. The number of children, where they are, what they are doing. There are staff, dads, moms..siblings...the words.."I can't find him" strikes a nerve in every one of us. We fan out...we have a plan. Two cars, 6 moms and a dad....we go every direction. We comb every yard. After 3 minutes, I have two moms with their thumbs on 9...1...1..After 5 minutes I see a dad carrying a little boy, black shorts and no shirt...walking down the sidewalk to my house...I see his mom on her knees in my yard. She can't stand, she can't breathe..her emotion spills over. We all feel it with her. She embraces her child and I know what she is feeling. We have been there.

We aren't bad parents, we aren't "not watching", we are more protective, more watchful than you can ever imagine. Our other children sense our panic when we say "Where's your brother/sister?", and they go into full search mode with us. Please don't think we don't have nightmares, take extra steps, talk to our neighborhood groups. No S.W.A.T team, or police force could have found this child faster than we did. We are a club all our own, and we hold each other up, we will never stop trying to educate our families, our neighbors,  our friends.  Thank you for being there, for watching, for taking the extra step.
That little boy, missing for a mere few minutes was standing, looking into a patio door, and my neighbors opened that door and tried to figure out why he wouldn't answer "What's your name?". "Where's your mom?"..but the guardian angels they were, they waited, and watched until they saw one of our hero dads come running by...Our entire parent community thanks people like my neighbors. We cannot say what it means when you notice that one detail that could save a life.....

Mothers day

I can't tell you how to be a good mom. I have often wondered what the marker of a good parent is. Is it the amount of time you spend, the knowledge and wisdom you pass on to your child?  The success that they bring in their lifetime to make you proud? I think "mothers day" has evolved for me. Has changed in ways I can't explain if you haven't experienced it. I can only do this in parts...
My mom: My mom and I don't have the typical daughter/mother relationship that a women in her mid thirties normally has. I can't call her when my children are driving me crazy, I can't go home and cry when life is hard, and let her bake me cookies and sleep in my old room. My mom has had MS for years, she lives in a nursing home, and obviously that changes the dynamic. I became the parent. I make decisions on what she can eat, what medicines they give her, what days I will bring my children to visit. Pushing your mom in a wheelchair years before her time feels unfair. It robs you of something you didn't know you needed. We bring her gifts, movies and pictures, and things to fill room 410, but it won't take away the emptiness. What I can do is remember what she gave us...the ability to accept others where they are. She was a para professional for children with special needs long before I knew what that meant. She taught us to stand up for others who had no voice. I didn't know the depth of this lesson at the time.

Being a step mom: I know I have written before about how I never wanted this. Especially all of a sudden a parent to teenagers I didn't know as toddlers. About how I never knew I could love other children like my own. There would be too much jealousy, too much competition....But if there was ever a time when you had to begin to understand selflessness, it would be step parenting. You hurt when they do but its hard to show it, when they cry, when they learn, and you never get the credit...But you don't care. You love anyway. You learn unconditional, you learn acceptance. And the gift I have been given opened my eyes to something I never understood. If I could tell my step children one thing, it would be how they made me a better person, and how glad I am we had a little bit of time together.

My Boys: I don't have the time or the writing skills to express my love for these four beautiful sons I get to call my own.
My Luke. My musical, intelligent, intuitive gentleman. I have prayed you would turn out like you have. Graduation this year, and I can guarantee that I will be a sobbing disaster. A crying, embarrassing person that has shared concerts, pizza, 80s movies, and hopefully enough anecdotal wisdom to last you a lifetime. I will always be here supporting you in anything you choose. This week when you called me to say you were being offered a job as a support professional for kids with autism, I talked about how experienced you were when you hesitated and how great you would be. After the call, I cried and thought about how much you would bring to the world.
My Chandler. Who has taught the world so much about accepting, about joy, and about the fact that we all have something to teach, and give. You are smarter than anyone knows. Your funny laugh, and the way you sense things we don't. You are like a "star child", someone who can topple what is normal, whose extra senses and feelings can somehow bring society to the  point where we accept YOUR energies and values. Maybe your way is better. I will never stop fighting for you.
My youngest. Elliott and Sawyer. My yin and yang. My sweet, thoughtful quiet boy and my curious, energetic, personality forward sweetheart. I love you both more than you will ever know. Every day brings something beautiful. Today, I picked you up in the rain. You came bursting out the door of your dads house, with two plastic bags. Potted flowers, poems, and picture magnets. Things written in your shaky handwriting. We told your dad we were going to the new disney movie, and really we went to Avengers: Age of Ultron, and we bought as much popcorn and candy as you could carry. On the way home, we passed a woman on the curb with a sign that she was homeless. I don't care if it was true or not. Sawyer handed my last 5 dollar bill out the back window in the rain. His little voice "Hello?" and then woman in her green poncho got teary-eyed... "thank you sweetheart, tell your mama Happy Mothers Day." Sawyer "I will." And with his big eyes, he asked if she would be okay. We hung out, and read stories, and I didn't need anything else.
My husband:
The first mothers day after we got married. Breakfast in bed, a Vegas puzzle, letting me sleep in, you baked me a chocolate cake, got me a facial and pedicure, and better than anything? You made me feel like the best mom on earth. You knew why I needed this. And your support means everything.
My heart is bursting with love, and aching for what I don't have, what others don't have. But I know how lucky I am. I know that my children know love. That I have figured out the key to how to be a good mom, and that is....to simply hold out your hand, accept them for who they are, and watch them grow into amazing beings. Cry in front of them. Talk to them. Laugh with them. Let them do silly things. Indulge them, but teach them values. The best job, the hardest, and the most rewarding. Mom.

I don't want the world to see me...cuz i dont think that they'd understand...

Being an autism mom involves some level of crazy. I have done the following..

1) threw a jar of baby food in wal-mart (plums actually)
2) Left an IEP meeting for 45 minutes (and sat in the nurses office) after telling the team "I...need..to be...away.."
3)Told a lot of people why they suck...
4) Let my child with autism do things I would never let my other kids do (and felt #sorrynotsorry)
5) Lied about great it is being a special needs parent
6)Cried, and cried, and sobbed until it hurt...
7) Bought 9 kinds of pop tarts at a time
8) Told my ex husband and current husband "YOU DON'T GET IT!!" (and cried)
9) Had fantasies about what I would say...at school, on the Senate floor, at the doctor..to my family
10) Wondered if GOD is there, prayed, said I DO believe, I DON'T believe, and then cried again..

Listen to me Autism moms (and dads). It doesn't matter. It is a grief CYCLE. It will happen again and again, and it is OK. No really. We aren't perfect, we are human. And we are amazing. Things change because we bond, we talk, we move forward, and we connect. Every day will be different, and hard, and beautiful. I think we laugh harder than other people. I think we see beauty and grace in ourselves and our children, and spouses that others do not. I think we hold on to HOPE and the thing we need the most...each other...We see the joy in each other, and the potential in our children and those that are not ours. We are not hockey moms. We WANT our children to progress and surpass others, and we do that because then there is hope....for all of us....

Boy Mom...why yes, it sometimes sucks...

Why raising boys in 2015 is so much harder than decades prior to now…..


I have four boys. Yep, four. 18, 12, 7, and 6. And I have brothers, and nephews (yeah, 7 nephews). Our family doesn't make girls apparently. So over the years I have heard phrases from my well meaning friends like "Oh, but girls are more drama!" "You spend so much less on clothes!" "You are so lucky, no wedding and prom expenses!" Well, let me tell you, that while I tend to agree with the financial aspect, there are a few "cons" to the raising of a testosterone filled household. My top ten annoyances aka things I loathe about having sons in no particular order.

1) NERF:

Yeah, the company that makes foam weaponry that have an alarmingly accurate range and increasing speed. Way to go math geniuses. Rather than the simple arrow or dart you had a ten pack of and had to look high and low for to reload when my brothers were kids, now you have "Nerf zombie Strike Crossfire Bow", so they can pelt me in the head, while simultaneously shooting my back with the sidearm ricochet disc blaster. Awesome.

2) Legos:

Gone are the days of creative building with primary colored blocks, building castles, houses, and maybe a spaceship. Nope. Those are "classic collections" or "lego creative builder" like it's some amazing inspirational tool instead of the money sucking hole that brings you the LEGO Star Wars Sandcrawler Play set for $299.95, but WAIT! Legos are for girls too! Maybe you are interested in the Parisian Restaurant Play Set for a mere $159.95. Nope, we can usually afford something like a police chase set with two guys and a car. Yeah, 100 legos, 10 minutes. 20 dollars.

3) Skylanders:

I would LOVE to meet the brilliant mind behind this second to legos wallet draining scheme. Skylanders is a video game in which you don't just PLAY. You place your (sold SEPARATELY) characters on the "Portal of Power" as they come to life in the game. Followed by sequels: giants, spyro, swapforce, and the almighty cash killing Trap Team, which not only has all new characters, but also EIGHT elemental categories which need $6 crystals, traps, and trap masters that you need to complete your $80 game with all new portal that magically whisked away my paycheck.

4) Cartoon Network:

I do not understand this station. What happened to teenage mutant ninja turtles, smurfs, and scooby doo? Oh yeah, they are now live action films, and CN is home to such cartoons are Adventure Time, Amazing World of Gumball, and Uncle Grandpa? WTF? Yeah, Uncle Grandpa, who visits the homes of children with his "Belly Bag" aka talking fanny pack, a giant slice of Pizza named Steve, and a rainbow farting tiger named "Giant Realistic Flying Tiger." Seriously. I can't even.

5) Beyblades:

Little metal space ships of death. They have crappy plastic battlegrounds that if stepped on immediately crack in half, but yet the "Beys" are steel plated throwing stars. You make them "fight" with a plastic zing strip that makes them spin and crash into each other. I think you "WIN" if your Bey is still spinning….

6) Yu-Gi-Oh cards (or pokemon, or whatever collection of deckbuilding crap that covers every floor in your house):

 Every now and again I hear a gasp from the other room. "OMG, you have MAGICAL HAT!!!" or "I'm not trading you my "Fiend skull dragon!" I bought binders, I bought plastic sheets. They are. Still. On. Every. Surface. Of. This. House….counter, carpet, floor, under beds, blankets, backpacks, pockets, they are a never ending paper nuisance.

7) Minecraft:

If you haven't heard about THIS game, you don't have boys. Read Minecraft Hacks so you can have a conversation with them. Ever.

8) Robotics:

Enter Zoomer the interactive dog, or Boomer the interactive dino-sense responsive friend that knows you are interacting with him. Or MIP the hand motion Gesturesense technology that have a social media group called "Mipsters" in which you can post what YOU would like to see Mip doing!!  "I would like to see MIP tight rope walk between two buildings! #danger submitted by P. Guerra "I would like to see Mip paint with his wheels" or "Make two MIPs do a medieval joust"…GO THE F@#$ outside and play you technology laden, lazy little craps!!!!!!

9) "Art"
We have piles of coloring books, construction paper, and paint. Nope. Boys will make weapons, ships, and crap out of everything they own. Don't even try to say "Use it for its intended purpose." It's futile. Give up.

10) The One thing that is THE SAME:

Boys from every decade up until now have this common thread. Elementary school humor. Farts are funny, butts are funny, and things like "Hey Mom, hey MOM!!!! Boys go to college to get more knowledge, girls go to Jupiter go get more STUPIDER. (dissolve into hilarious, gasping for breath giggling, which makes them fart, and laugh harder."

Chandler and Grandma June

This is not my mom. This is also not my grandmother. She is my mom's roommate at the nursing home.  A sweet lady named June, who likes her birdwatching, and accompanying my mother to bingo. June cannot hear very well in her old age, but she loves to talk. She doesn't quite understand that Chandler has any issues, or autism for that matter. But she understands that he loves to sit on her bed and watch the birds. I try to move him, and remind him that it is June's bed, and he can't just go wherever he pleases. She always tells me to leave him alone. Today was the first big flake, beautiful snow fall. June was already watching the snow drift down when we arrived, and Chandler climbed up to his "spot". She talked and talked to him about the snow, and told him to keep watching for the birds. They have this special bond, and she doesn't know it, but she makes me cry. Tears of happiness, that she sees what I wish others would see, and that is a little boy who loves the birds and snow, nothing else. He puts his hand on her arm every time we leave, and that simple interaction is enough.

Sunday morning

If I could see a Sunday morning snapshot of all summers past, I can already tell you this summer is by far my favorite. And it just started. After a long, almost unbearably snowy winter, we've had a few warm and rainy days. If you have read anything about Chandler you know what a fan he is of rain. Yesterday he spent 5 hours outside with his umbrella. Doing nothing but enjoying the rain sounds hit the umbrella top, the feel of the wet cement under his feet, and watching for his new beloved favorite. The bird.
     Chandler is somewhat verbal, and most of the things he talks about are "requests". Pop tart, milk, toast, outside, swimming. But this week it has been all about "Bird" and oddly, he has been closer than ever to his therapy dog, Gwen, or "puppy" as he calls her. He has been taking it upon himself to feed her. Even though this is a chore he has helped out with for a couple years. He used to need a lot of prompting because of the dog food smell (blame it on autism senses, because I can't smell it), and the annoyance of a chore being asked of him in general. But the other day I was doing some work on the computer and the house was quiet with no one around except Chandler and I, and I heard the familiar sound of a cup of Eukanuba Adult Large breed being dropped into a metal pan...Sure enough, he was jumping around in delight as "puppy" happily scarfed down her second breakfast. Two things. Therapy dogs eat twice a day only. They also require the command "okay" before they will touch the food. Fast forward, three days later, I hear the sound AGAIN just as I am coming out of the bedroom in time to hear Chandler give the "okay" command. This is just too funny for me to get mad about, and I have to be proactive and hide the food cup. But the amount of progress in this seemingly small task is enormous.
     So this Sunday morning the boys are downstairs annoying each other over the Wii, John is working on his golf game, and I am eating peanut butter toast on the deck and admiring my son. Chandler asks Gwen to "come on" as he goes down the stairs, and I'm in tears. Another first. He is listening to the birds chirping from every direction on this cloudy, calm morning, and points that out to me over and over and over, and I can't get enough. He is becoming more verbal every week. We have worked very hard this year, and after a very frustrating school year we have overcome many obstacles, made some big changes, and this year we will be unstoppable.

Autism "action" month.

Autism awareness month. Of course. I do all the ribbon-y things. I have blue hair extensions, I ordered a license plate cover, and bracelets for my sons class and I am attending every single event I can, and telling my story to everyone who will listen. But it’s not enough. So people will see autism, and hear the word. But they can’t possibly know what that feels like for me.

I speak for me, and I speak for my other families. I work in a non profit field. I am not full time. We are funded by grants. I take these stories home at night. I answer my phone at any hour, and any day. I cry for them and with them.  I celebrate their success and every milestone their child achieves. It’s like it’s happening to me again. I look to other moms who have been here before me to light my path.  I know my son has what is considered “severe autism”. I would love to tell my legislators, the people at the state level that make decisions that directly affect my family and our quality of life how beautiful he is. How he makes me smile when he stops his constant stream of motion for a few seconds and lets me into his world and touches my face and maybe says “mom” or “two arms” (that means a real hug). That moment from any motion picture when time stops and all I see is his eyes are this deep blue. And you forget about all the screaming, flooded rooms, the two hours of sleep, the painting the sink with nailpolish, the healed fractures in my ribs, the heart healing that happens every summer when the wound is ripped open again while I watch him grow up. Seeing each year the differences between my son and his peers is more apparent and they say hi and walk away at the park to play football. I have to hold back tears and wonder if his heart is breaking too.

That is the story I have to tell people. I want to tell the world how beautiful he is, but I have to tell them the horror stories just to get what I need for him and it’s wrong. Why do I have to relive the ugliness, the pain, and the hurt and every battle scar I have bared to the “gatekeepers” of services? How can I give him the best quality of life I can without help? I can’t.  We have a tendency shout from the mountain tops so people can see our children are CHILDREN and we want the inclusion, we want the support. But walking that fine line is so damn hard. I am so inspired by the Carly Fleischmans, the Jason McElways, the Alex Winemans, but that is not my autism. 

I cried my eyes out in my car when I heard the CDC released the numbers. I in 68. I in 42 boys. Yes, I give a shit about why and prevention and that this is a national epidemic. But is that going to help the other families already here? We are going to be facing a nation of our children becoming adults. Where will they live and work? There are not “just a few” children with autism becoming adults with autism. We aren’t ready. I never go to sleep at night without wondering what happens if something happens to me? What parent wants to live with the thought that I have to outlive my child? We can’t become beggars taking what we are given and hungering because it isn’t enough. We have to make this right for our kids. Don’t stop talking, don’t stop advocating. Take every opportunity you can to tell your story. And STOP fighting with each other. We are united in this. I don’t even have to know you, and I will fight for you.

I am in the comfortable stage of autism. I am somewhere between finding my way and watching new horizons unfold in front of me as they always will. I have some time before I have to face transition out of the school system, and I have to balance keeping that in the back of my mind and not allowing the black hole of worry to swallow me up. Some of the fear and stress has subsided over the years, making room for some advocacy and leadership. I will never be able to step down or walk away from this role. It should NEVER consume you as a parent. You should still have the beautiful moments.  But at those moments when you feel you can’t be a leader or fighter because you are too exhausted, remember the power in numbers, the power of one heartfelt story.  If you hit a brick wall and hear “there is nothing we can do”, climb it. Don’t accept that.

Do one thing this April month..this autism awareness month… as a call to action. Get involved. And to those of you without children with autism. You can do this on behalf of your friends, your family. Don’t just put the blue light up, and say I support autism. Autism awareness is wonderful and it’s needed, but once the face of autism is out there, the question is…what are we going to do about it?

Teaching moments...

I have other kids. Besides my child with autism. That is a big, meaningful statement all by itself. You have to carve out time without getting tired (I say that in jest), and teach them patience while modeling it yourself. Life is full of opportune times to get your cape out and show your community how pro active you are, and there are more often times, moments when you freeze. When you get nervous, angry, or frustrated.
     I hate feeling annoyed when my other kids have activities. I want to be "that mom", the one who is den leader at scouts, the one who bakes homemade everything, the mom who sews her own halloween costumes. But I'm not. I am barely awake for storytime.
     My six year old had a pancake breakfast for cub scouts last weekend. I bundled up him, his little brother, and Chandler. We drove early to the church, and the first thing Chandler did when he saw the table set up with the GIRL scout cookies was squeal in delight. And the first thing I heard was a "shush". Oh okay. He's too loud when there is a church service going on in the other room. I get it. And it hurts. He cannot help it. I say nothing. Today it isn't worth the fight. I don't know these parents. So I help Elliott flip sausages, and I watch all the parents in the kitchen watching me. We sit at the table farthest away. There is another couple near me with a boy Sawyers age. They trade iphones and play Candy crush and angry birds. They are smiling at Chandler eating thin mints. I begin to think about this being an opportunity. I relax as I see there are one or two people interested, asking questions, and I can tell Chandler has once again won hearts just by being sweet and signing "cookies".
    The boys start to race derby cars for practice, and Chandler gets very excited. He jumps and flaps as the cars race down the track. The boys in Elliotts scout den are looking at him, and I realize. This is good. FOR them! This is the way I am working on social inclusion. By showing them I am having fun with Chandler, and I notice his brothers are not bothered by his "loudness", in fact, Sawyer is talking to him about cookies, and his new friend is noticing. I don't have to do anything but be present. And allow Chandler to be Chandler. Sometimes being the best teacher is allowing things to happen.

What isn't missing

It's a running joke in our family that we have only boys. I have four amazing sons, and six nephews (soon to be seven). I have been shopping with my sister as we slowly pass the baby girl section with longing and wistful looks at the christmas dresses with tulle and ribbons, and we have to skip the aisles of rows and rows of barbies with golden, brushable hair smiling from their shiny boxes. We say "Oh we would have LOVED this as a kid..." Currently, I know all about Bey Blades, and species of dinosaurs, and Skylanders Swap Force.
     One day a couple years ago, Elliott (now almost 7) had his first play date. It was this sweet little girl named Ava from his preschool class. I was more excited than he was as I pulled out a rubbermaid tub of my little ponies, and my precious shoe box of sea wees. See here if you are not a child of the 80s.

This adorable, pig tailed girl showed up, and I left them with peanut butter sandwiches at the counter while I went to dig out more vintage treasures. I came back out to Elliott and Ava "eating" my sea wees with Elliott's dinosaur collection. My face fell, and I went back to reminiscing over my sticker books...
Everyone says "Girls are drama, you're lucky", at least you didn't have to buy all new things, etc. etc. It doesn't help. I LOVE being a "boy mom", it makes you tough (like when you step on legos), you get to be a cheerleader at sports, my teenager plays guitar and plays chess like a boss, and except for the roughhousing and fights, they are mostly sweet, especially when my little Sawyer who is 5 still comes up and says "Mommy, you are so beautiful". And I know they will be fierce protectors of Chandler. I already miss the days when Luke used to catch frogs in the field behind my mom and dads house fourteen years ago. I see my 2 year old nephew Jake drive a "bus" (monster truck) across the floor, spitting as he makes truck noises and it reminds me that I won't see that anymore. My babies are boys now. (Elliott was climbing the rock wall at the Y for Cub Scouts today!) But every once in a while I get little glimpses of what I missed by having only boys. Today I took my boyfriends daughter dress shopping for a formal. She is in a fashion show at school for children with special needs and their mainstream peers. What a cool concept. Kids that might not get the chance at a "grand march" and parents that feel that pain of looking at prom season in the stores knowing that their child won't be going. It hurts. It's the cycle of grief that never stops. Reminders of our children's differences. The kids that take part in this, that want to increase social inclusion are amazing. I am glad to see the future leaders and the inspiring teens that do this.
     Walking into the dress store, she piled her arms full of dresses. Lace, sequins, ruffles, beads, flowers....I played with my phone, and sat on the floor drinking coffee. I began to look around. Thinking back to school days, and prom. Dress fittings for my sisters wedding. I watched mom and daughter pairs come in the door, one after another. The girls came in and out of the curtained rooms draped in layers of soft, shiny fabric. I suddenly wanted to play dress up. One after the next was tried on, and Sam and I laughed about some "NOT even an option, Nicole, I hate these ruffles", contemplated some, admired some, and finally decided on this beautiful black and sparkly one with a corset back. Stunning. She looked so pretty and we agreed this was "THE dress". I was blinking back tears thinking about what I get to do now. I may have missed out on my own daughter, but this is a close second. Sometimes we are too focused on what we don't have. What is missing. There are daily reminders in my life that nothing is missing. Things are as they should be.

Making sense

There was this young woman driving erradically. She cut a few people off. Sunglasses on, iphone in her hand, she was reaching behind her repeatedly. Her kids were bouncing up and down in the car, misbehaving. Her car was filthy and she was drinking Starbucks. She slammed on her brakes at the stoplight almost missing the red light, and the old woman next to her shook her head in disgust. The young woman lowered her sunglasses and the old woman could she had been crying. Her eyes were puffy, tears were making mascara run streaming rivers down her cheeks. The old woman stopped shaking her head. This young woman, she hadn't time to think about washing her car this week. The coffee was dinner. Her son with autism was the one constantly bouncing and he was whining hearing his mom cry. She was repeatedly reaching for his hand. On the phone was her sister and they were discussing their mothers options. Her mother doesn't have much time left. The past few months have been a constant strain on her siblings. She wants to fix it. There isn't any fixing it. That young woman was me. Just a couple days ago.

Some things I just can't make sense of. As human beings we have this need to control the things that are happening around us. When we can't it is frustrating, and hard to understand. I don't have any tears left. I can't make a lot of sense of anything right now. I watched something amazing yesterday. I took the boys to see my mom in the hospital. Chandler is terrified of all that is medical. Lab coats, scrubs, medical equipment..sends him into a panic. We pulled into the parking lot of the hospital.  He used to go to speech at this hospital on the bottom floor, when we got there I told him he could stay in the car with Sam. He began to cry this sad, tearful cry I don't often see, so I told him "Chandler, you can come. But it isn't speech. We are here to see grandma, and she is sick." He took my hand. On the the third floor, he began to whine, and as we got closer to her room it began a full out anxious cry. I didn't have the energy to fight, and I wasn't annoyed. I simply said "If you want to stay in the hall, you can. Mom is going in. Grandma is in this room. You can stay here by the wall. It's okay." And he froze. Then he did something incredible. He clenched his fists, and he put his head down. He did a very deliberate run/walk into her room. A quick scan told him she was indeed in here, and he plopped down in the chair. She smiled at said "Chandler! I'm so proud of you!" And so was I. Proud of him. Proud of her for seeing the things in him that I do. Wondering what he understands.

I went back alone to the hospital today. I talked with the doctor and found out I do have more tears. I sat with her for a long time. She can't say much because of the pneumonia. In a few days when she is back at the nursing home I will be able to understand her better. She wants to go home. Even for the day so she can see her house, her things, her bird feeders that sit outside the window and attract hundreds of birds even in winter. She asked me today if my brother Justin could put a bird feeder outside her window at the nursing home. I told her I would ask. It made me think she probably wouldn't see another summer. Do not wait for the things you want to do. Don't wait another second for the things you want to tell people. Don't say "I'll go tomorrow. I'll call next week." Do it now. And don't judge other people based on what you think you see. Be good people, pay it forward. A few months ago I was annoyed when I saw my mom was calling me again for the fourth time in one day. God what I would give to have more time. Make every day count.

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.


 http://www.smilebox.com/playBlog/4d7a67344f5445784e54633d0d0a&blogview=true

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...

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 own..you 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

-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.

-Swearing
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....