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.