Monday, August 10, 2015

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.....

Sunday, May 10, 2015

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 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.

Monday, April 20, 2015

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 " 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 school, on the Senate floor, at the 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....

Tuesday, February 3, 2015

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."

Tuesday, November 11, 2014

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, June 1, 2014

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.

Saturday, March 29, 2014

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?