Friday, April 3, 2015

Honestly, I Pretty Much Hate April

It's April, again. For this one whole whopping month of the year a large portion of the world will tout its awareness and acceptance of people with autism spectrum disorder. For thirty out of three hundred and sixty five days there will be puzzle pieces, blue lights, red shoes and jigsaw piece awareness ribbons everywhere. And to be absolutely honest with you, I pretty much hate April.

For me, April is one long month filled with a lot of reminders that two of the people I love most in this world need one stupid month a year dedicated to trying to get the world to accept them as different, not less. April is depressing for me. 

In this family we experience autism awareness and autism acceptance 365 days a year. There are moments of happiness so huge it nearly overwhelms me. There are moments of pride so fierce it steals my breath. There is love, unconditional, just the way you are now love every day.

And there are moments of grief and anger so heart wrenching I physically ache. Every April I feel that anger, sadness and grief more than I do during the other eleven months. I think it's because it is "Autism In Your Face 24-7" month. There is just no escaping that your child's life will always be harder, a little (or a lot) more dangerous and more emotionally painful (for them and you) in April.

For me, April is thirty days of remembering parents pulling their child away from Chris when he was in elementary and middle school because he was "weird", he was a "trouble maker" and the one that cut the deepest, "other kids won't be friends with you if you are friends with him". April is thirty days where I am constantly reminded that there will ALWAYS be people who make fun or stare at my fourth grader because if someone else cuts his paper he cries. It is thirty days of never being able to forget, for one second, that my guys struggle more, feel emotions deeper, and often react stronger. Even if they have thirty consecutive great days in April, I'm still reminded daily that their enjoyment and quality of life depends on others' awareness and acceptance of their neurological differences. 

So yeah, for me, April kinda sucks. I'm 100% percent behind #autismacceptance, I just wish more people were on the band wagon twelve months a year.

Thursday, March 26, 2015

Hope and Faith, Reaffirmed

It has taken me a few days to get this written down. Sometimes it's the magnificent, make your heart burst with joy things that are harder to get right while writing. So I took my time and thought about what to say, and how to say it, because I want you all to get it - I want so much for you to feel the warm, fuzzy reaffirmation of hope and faith I felt when it happened. 

For her birthday celebration Miss Thing (a.k.a. Sarah) chose to go see Insurgent with two friends. Her BFF, Miss A, and her sweet friend Miss E were invited without delay. We decided long before Friday that I would accompany the trio and stay for the movie. Reason one was because they wanted to see an evening showing and I'm not okay with three girls at a movie theater on a Friday night without an adult. Reason two being Miss E has special needs and as much as Sarah wanted her to be there she also knew Miss E would almost definitely need a break from sitting in a dark, fairly loud theater and she really didn't want to miss parts of her "birthday movie". There was no way I was going to complain, I NEVER go to the movies so this was a treat for me, too! And, I absolutely adore my trio of silly, funny, sweet girls so spending an evening hanging out with them was a privilege. (Plus, let's face it, I'm going to blink and Miss Thing will be waaaay over going anywhere with her mom willingly!)

Miss E either called or texted Sarah half a dozen times between school letting out and the time we were to meet at the theater, very worried she would be late. My girl reassured her every time that her mom would make sure she wasn't and she wouldn't miss 'the party'. Miss E literally bounced into the lobby when she arrived and proceeded to hug Miss Thing and Miss A while squealing and laughing. Her mom was nearly as giddy, thanking the girls over and over for inviting Miss E. 

And this is when Hope & Faith Reaffirmed moment one blindsided me. Both girls just waved Miss E's mom off and said "She's our friend, of course we want her here. Come on (Miss E) let's go see what snacks look good." And then they flanked their friend and trotted off to the concession stand. Miss E's mom had the most peaceful, joyful expression and we were both just a touch teary. Why? Because watching the three girls peer into the candy display and giggle together wasn't extraordinary to them, but it was for Miss E's mom and I. As much as I loathe the word normal, that's what it was for the girls - a normal tween night out at the movies. And we both know how very uncommon it is for our minions with special needs to be completely accepted and included in their peer groups.

I made my way over to the trio who were now at the counter, a line of five or six deep behind them. Miss Thing and Miss A got their candy and drinks and then prompted Miss E, "Your turn. You have to tell him what you want." Miss E ordered and then looked to her friends and tried to hand off her purse to them.

Hope and Faith Reaffirmed moment two happened. The girls both shook their heads no and gently pressed Miss E's purse back in her hands. "Ok E, your mom put your money in your purse, get it out and give it to him. He's going to give you some money back so keep your purse open." A couple of older girls behind us in line were sighing and tapping their foot. While Miss E pulled out cash to pay the girls turned and said nicely but firmly, "Our friend needs a little longer to finish. Be patient." I wanted to whoop and high five them but I figured that might be embarrassing to them so instead I smiled at the guy working concessions and thanked HIM for his patience. He grinned huge at Miss E and said, "Take your time. It's cool." Okay, I might have briefly considered jumping over the counter to kiss his cheeks and hug him but again, that probably would mortify three twelve year old girls so I refrained.

Miss E made it through the first forty minutes (with Miss Thing's arm over her shoulders and her head on Miss Thing's shoulder) before it was obvious she needed a break. She and I headed to the lobby to walk and talk. While meandering she was stopped THREE TIMES by other kiddos who go to their school with "Hey E! What movie are you seeing?" and other greetings. She told them Miss Thing picked 'an adult movie, not a kid cartoon movie' and she wanted to walk. Hello moment three of Hope and Faith Reaffirmed. All the kiddos just grinned and said yeah, sometimes they didn't want to watch a whole adult movie either before saying good-byes and heading into see their show.

We went back after fifteen minutes or so. Miss E promptly put her head on Miss Thing's shoulder and we finished the movie. We went to the lobby to meet her mom where she demanded to stay with Miss A and Miss Thing. The girls reminded her she was going to Florida the next day and would they would see her after she got back. Miss E decided Florida wasn't as good as being with the girls and darted off to hide around the corner. Her mom and I laughed a little and watched the girls follow behind her. Within a few minutes all three were back and the girls had promised Miss E they would come see a kid movie when she got home. There were more hugs, and then I love yous and you are my BEST best friends shouted by Miss E as we headed to our cars.

And then my girl and her BFF slapped me upside the head with Hope and Faith Reaffirmed moment fourI told the girls how proud I was of them for treating Miss E the same way the treat each other while still helping her when she needed it.  They both looked at me like I had three heads and said, "Why wouldn't we?!"

That, all of that above, is what acceptance looks like. That is the goal. And all of that most certainly reaffirmed my hope and faith for the future. 

Friday, March 20, 2015

Skip Lighting It Up Blue - Please Do This Instead

For a number of years I have asked everyone I know to participate in Light It Up Blue each April, the world wide autism awareness event promoted by Autism Speaks. This year, and every year after, I'm asking you to SKIP THE BLUE. Let me explain why we are no longer as a family participating in this campaign and instead asking you all to do something that will truly make a difference instead.

Over the past year, as Christopher has inched closer to adulthood and Ryan approached puberty, I realized that Autism Speaks does not represent what THEY need and desire in their lives, now or going forward. We have always been open about their autism diagnosis and treated it as just another part of them and their unique, wonderful selves. They don't need to be cured, they don't need an organization that speaks for them instead of listening TO THEM. I am so far past caring what caused their neurological differences that each time I see a new article tossing out another cause of autism I want to scream. 

And I am over autism awareness. With the amount of news stories, television shows and movies about autism and the people with autism you would have to be a citizen of a third world country or live under a rock to NOT be aware of autism. And here's the kicker - in the nearly seven years since Christopher's diagnosis I can assure you awareness hasn't been a big issue. ACCEPTANCE, on the other hand, is the never ending battle. My awesome, smart, loving boys don't need you to wear blue one day a year and be aware autism exists. What they need is for you to see and treat them as individuals with goals, dreams, feelings and desires who sometimes need help navigating their way in the world. What they need is for you to LISTEN to them, to treat them with dignity and respect and ACCEPT them just as they are, differences and all.

Does this mean you must ignore their over the top volume when they are talking with you? No. Does it mean you give in to their every whim and want? No. Does it mean you do not expect them to treat YOU with respect and understanding? NO. What acceptance means is that you value them as the unique individuals they are and realize what makes them different doesn't negate their worth as a person or to society as a whole. 

Instead of donning your blue and changing your light bulbs for a day to show you are aware, I'm asking you to do something that will make an impact every day. I'm asking you to take some time and honestly think about how you treat the people you encounter who are not like you. I'm asking that you take a few minutes and really asses your actions and behaviors towards people on the autism spectrum. Do you LISTEN to them when they speak, whether with words, assistive technology, their hands or their actions/behavior? Do you undermine their value by presuming they are incompetent and have nothing to offer to you and society? Do you mock and snicker at the person you see stimming? Do you let your children and friends mock and snicker at them or do you use that opportunity to promote acceptance of differences, no matter what they are?

So, skip the blue this and every year. Instead do something that shows the world you are more than aware, show the world your autism acceptance.

Thursday, November 13, 2014

It's Sink or Swim Time

An article in the Huffington Post (read it here) spurred me to put my fingers to the keys and post after a too long absence from blogging. The article, entitled Are We Raising A Generation of Helpless Kids?, has been a topic of frequent conversation here lately between Daddy-O and I. In the past few years we have had more moments of burying our faces in our hands and sighing "Where did we screw up? How did (insert minion's name here) become a slacker?!"

Don't misunderstand me, our minions aren't total incorrigible, lazy, unmotivated, feeling entitled to whatever they desire children. The problem we are working to correct is that with five children, ranging in age from seventeen to nine, it seems like there is always one behaving like an incorrigible, lazy, unmotivated, feeling entitled to whatever they desire child. And when that behavior shows itself we feel like we have failed that child. 

We realized that saving them too often when they were younger didn't help them, it hurt them. In our quest to make sure they were happy, stress free and successful we stole pieces of their independence and failed to teach them that every choice has a consequence and a person must accept and live with the ultimate outcome of their decisions. Every time one of us drove like a bat out of Hell to take a forgotten item to school, every time we stayed up until o'dark thirty finishing a project while they slept, we saved them from facing the natural consequence of their actions. That was poor parenting!

It is a thousand times harder to change bad habits in ourselves and our children after years of giving in to them, but it is worth it. Do I want my twenty five year old calling and asking  me to bring his briefcase to work because he forgot it? NO! Do I want to have my thirty year old child at my house napping while I finish up his/her work project? NO!

As horrible as it sounds, we have adopted a sink or swim, your choice your consequence attitude over the past two years. It's hard, no doubt. When bedtime comes and there is unfinished homework I feel nauseous. I have to force myself not to give them the answers quickly or do it for them. I have to remind myself that the goal isn't an 'A' in math but to raise a responsible, independent, motivated adult who can function in the world and contribute positively to society.

For those wondering what we have done to correct our mistakes, I'll give you a few pointers.

  • We charge a fee for bringing forgotten items to school/sports practice. The fee is the current taxi rate. Every minion gets one freebie - because hey, everyone forgets something sometime - but after that a forgotten library book delivery is $1.75 per mile. The choice is theirs, pay the fee or accept the consequence of not getting a new library book that week.
  •  Reminders are given to complete homework twice. We will help a minion understand the material, provide the resources for the assignment, but we won't give the answers or do the work for them. My childrens' school projects now arrive in the classroom LOOKING like they did them themselves. If a minion chooses to ignore the reminders and not do their work they live with the natural consequence of their choice: missed recess, loss of privileges at home and at school. We no longer force homework to be done, but we do enforce consequences for unfinished work. 
  • Needs are always provided for, wants are earned or bought with money earned through work. There is not an endless supply of money available in this home, the money tree in the backyard never grew, the odds are pretty high those two things will remain constant for our minions' entire lives. It is far better to learn the relationship between money and work at nine than it is at forty.....

Will we ever be nominated for Parents of the Year? I seriously doubt it. Will we have to explain why homework or projects are incomplete to teachers sometimes? Yes, I just did that exact thing yesterday! Will we spend many hours over the next decade seeing a sad, pouty face because we refused to buy something a minion wanted? Hell yes. When our minions are leaving the nest and forging their path in the adult world will they be responsible, motivated, independent and proud of themselves for their accomplishments? That's the plan, and we hope and pray we give them the tools for that.

Friday, July 11, 2014

The REAL School Supply Shopping List

Buying school supplies for five minions, ranging from a senior in high school to a fourth grader, is huge undertaking. Add in that two minions have attention deficit disorder and two are on the autism spectrum spectrum and it becomes a chore that ranks right under childbirth without medication. Because I'm a giving person who wants nothing more than to help my friends whenever I can, I'm going to share my school supply shopping plan of attack and the items you actually have to buy. Heed me friends, I've done this for a lot of years and I've now got it down to an exact science! 

The most important rule in tackling the supply list shopping is to NEVER let a child go with you! It adds 4 hours and $200 to the total cost. If you don't take my advice I don't want to hear your whining when you get home with half the list, a case of wine and a migraine.

It is best to divide and conquer, to shop in waves so to speak. Tackle the adhd lists first:

Pens and pencils - Triple the amount listed, buying the least expensive #2 pencils and ballpoint pens available. UNDER NO CIRCUMSTANCES send the amount on the list to school the first day. If you do, you will start day 2 of school with a child telling you they have no pencils or pens and raiding your extra supplies!

One Binder and Folder - The list for middle school and high school students will say to have a folder for each subject. DO NOT WASTE THE MONEY buying that many. Your child will stuff every single flippin' paper in ONE folder, if you're lucky enough to get them to use one folder, or jam rumpled papers in their backpack for you to dig through searching for the form that HAS to be turned in the next day or the world will cease to exist.

The Biggest 3 Ring spiral bound notebook you can find - Loose leaf paper? Are you a masochist?!?!! Trust me, it is an accomplishment worthy of a chocolate fountain and free flowing champagne if your child can find assignments and notes in the one huge notebook. Giving them loose leaf paper is just asking to be on a teacher or principal's speed dial.

The Sturdiest Calculator you can afford - If they are on sale and you can swing it, buy three. And for the Love of all that's Holy, buy the extended warranty! 

Sharpie Marker, Black - Use this to plaster your child's name on EVERYTHING, including their jacket/coat, backpack and maybe even their arm. Hey, laugh if you want but I've seen too many "No Name" papers to run the run the risk that he might not remember who he is......

Now, wave one is finished so take a day or two break and celebrate! Right after you hide everything you bought. DO NOT give school supplies to your adhd child and expect them to get into their backpack. YOU put them in the backpack the night before school starts, then hang the backpack (and lanyard if they wear one) on the knob of the door they use to leave in the morning.

We're ready for Wave 2 - The autism student supply list:

Pencils & Pens - Price is not considered for these. You know just like I do that he/she will use only ONE exact type and brand of each. Bite the bullet and buy them by the crate. Seriously, if you don't and get the call saying "He/She is refusing to work because they don't have the RIGHT pencil/pen" I will not feel badly for you. HIDE THESE from everyone else in the house. If you have a safe, lock them away. Again, trust me, it's for your own sanity.

A HUGE Binder and folders - A folder for each subject is good. Just remeber that at no point during this school year can the color, texture, look or feel of these folders change. Plan ahead and buy in bulk. One little rip in the pocket will be cause to curl into a fetal position and lament the loss so be prepared to replace folders at the first sign of any wear or tear!

Loose Leaf Paper - My advice is to clean the store out. Those little paper things on the side of a sheet torn from a spiral bound notebook are the enemy! It will take your child three times longer to make the paper "perfect" than it will to complete whatever assignment is on the paper. Not to mention the erasing holes in the paper, which leads to the paper being tossed and starting over, which leads to using MORE paper.....

Calculator - Make sure it is the EXACT one on the supply list. Your child will check and compare and woe to you if it doesn't match. Again, buy two or three - once they use it they will likely refuse to EVER change brand/model so have a stock pile.

White Out - Buy it by the gross.

Once you've bought all this, watched your child thoroughly examine each purchase and determine it is "right" you can load up backpacks with their guidance. Because everything will have an exact spot where it MUST go. Put the loaded backpack in "their spot" - you know, the spot in your house where if anyone else places something World War III commences and pour yourself a glass of wine or cup of coffee to celebrate a job well done.

Best of luck this school supply shopping year! Remember, it could be worse - it could still be summer vacation and the grocery bill that goes along with that.

Friday, January 6, 2012

By the Authority Vested In Me...

As parents we spend a large chunk of time giving or denying permission to people: yes, you can sleepover at Sally's Friday; no, you cannot have 12 Oreos at 5:30 while I'm standing here cooking dinner. There are days when I think I've done nothing during my waking hours other than say the words "yes", "no" and "maybe, let me think about it" to little people. 

So tonight I'm giving my support system of Moms and Dads an unqualified YES to a whole slew of things. I know many of you won't ever give yourself permission for these things, so take my yes and run with it while you can 

YES, it is absolutely fine to skip doing breakfast dishes and take a nap after getting everyone off to school. You know what else? There is nothing wrong with turning on Nick Jr., PBS Kids or Disney Junior once the school crew is out the door and enticing your little one(s) to cuddle on the couch for an hour. (Trust me, you can close your eyes while you snuggle under a blanket without fear of falling into a deep sleep.)

YES, you can leave that load of clean laundry in the basket waiting to be folded for another day so you can read something purely for pleasure or watch a "grown up" movie or television show. Those clothes aren't going anywhere, and giving yourself a little rest and relaxation time is far more valuable than a pile of matched socks.

YES, you can spend the ENTIRE day at home in comfy pajamas. If you happen to have a long winter coat you can throw it on, go to the bus stop and nobody will ever know! The world will not stop spinning, you will not immediately become a rank and file member of the Lazy Parent club if you give yourself the gift of cozy comfort for a day. While you're at it, let your kids at home have a pj day, too!

YES, YES, YES! It is okay to break down on a rough day and cry for yourself and your child. It is NORMAL to have times when the demands of raising an extra special child overwhelm you and feelings of sadness, anger, guilt and despair fill your day. You can try the "fake it til you make it" method, but in my experience that leads to ulcers, headaches and exhaustion. It's just so tiring to put up a happy front when what you want to do is scream, yell and cry until you can't anymore. So, YES, for your own health and well being as well as that of your family, it is okay to occasionally lose it for a little while.

If you don't accept any of my above permissions, at least grab hold of this one because it is by far the most important one I'm giving you. ABSOLUTELY, POSITIVELY, WITHOUT A DOUBT IT IS OKAY TO ASK FOR HELP. Unless you have been hiding your tights, cape and clingy body suit from me, I already know that you aren't Super Woman or Superman. (If you indeed are a super hero and haven't told me, I am really mad at you!) If you don't have someone who "gets it" in your circle of friends, then lean on me. I will be honored, I promise 

I can honestly say that the friends I lean on most during the tough times are fantastic people who live inside my computer. My girls on Twitter and a few on Facebook have been life lines, sources of laughter and  understanding, and friendships that don't require close proximity. There aren't many things that bring joy and relief like having people who you know "get it" and are there when you need them. I think the Dave Matthews Band said it best: "I'll lean on you and you lean on me and we'll be okay."

Friday, December 30, 2011

Somethings Old, Somethings New: 2011 in Review

 In 2011 I Learned:

Curiosity Can Kill a Behavior Plan: You'd think that R's days in kindergarten would've taught me to recognize that his innate desire to know what something is like typically means he has to experience it for himself. When he came home the first week of kindergarten and informed me that "going to yellow isn't really bad, it just means make better choices" and then proceeded to tell me "I'm going to try red tomorrow so I can see and touch the walls in the quiet spot" my Uh-Oh alarm went off. The next day his teacher asked him if he'd like to go sit in the quiet spot by choice, not as a consequence of making a bad choice. He happily ran over, took a seat and rubbed his hands on the textured walls for a few minutes then said, "I like the walls there, they feel good." 

So why was I surprised when he had what I refer to as his "Record Breaking Attempt" week this year? Our elementary school uses a Tally/Dart/Demerit behavior system beginning in first grade. When Lil' Man started racking up darts on a daily basis for behaviors we KNEW he could control, his special ed teacher and I came up with what we thought was a genius plan. We informed him that if he received 3 darts in one school day he would have to go to morning detention the next day. What was I thinking?!? Of course, the very next day he got 3 darts - he actually called his gen ed teacher over to watch him break a classroom rule to be sure she saw him and gave him #3. I was aggravated, he was pleased as punch. "Mommy, tomorrow I can see detention! I did darts on purpose so I could go." 

Lesson Learned: It's a whole lot better for everyone if we figure out what R wants to see/touch/experience and give him the opportunity to explore it rather than leave him to his own devices for finding out.

It Isn't Crazy If It Works: My 5th grader can be the dictionary entry for 'forgetfulness'. On any given day it's a sure bet he'll forget where his shoes are, where he put his jacket and of course, his homework. Even with his teacher checking his academic planner before dismissal each day he came home without the book or worksheet needed for homework at least two days a week. Consequences, rewards and talks about responsibility were epic fails in this department. It was time for drastic action!

I take and pick up the elementary Crew members each day, and while waiting in the car rider line inspiration hit. I started getting to school each afternoon early enough to park, go inside to his classroom and (with the teacher's permission) announce loudly, "Hi Sweetie! Mommy's here to make sure you have everything you need for homework tonight." Score one for Mom.

Lesson Learned: Sometimes you have to think outside the box, do something just a little unexpected and crazy, to motivate your child. When typical approaches don't work, try the atypical.

Recognize When It Just Isn't Worth It: C has been in a self contained classroom since the middle of last year when it became obvious that the transition to middle school was too much for him to handle without more support. Administration and teachers don't particularly enjoy prying your child out of his locker after he's wedged and locked himself inside; when your child hangs over the second floor railing and the "all male staff report to..." call is made it is not a stellar day for anyone; if your child spends more time sitting in the office than he does in the classroom it's time for a change. For C, that meant a change in placement and learning in a self contained classroom with a teacher who is extraordinary in working with and understanding children on the autism spectrum.

At the end of 6th grade we developed a plan. It was a good, well thought out, slow transition plan so C could move back into his gen ed environment. We involved him in making the plan and he chose to start with his favorite subject, science. He'd love going back to a class that involved lab work and experiments, right? Right! From the very beginning of the transition, and that was just talking about when it would start, how long the class would be and showing him video of the class, it was a battle. He began sleeping less staying awake from anxiety over the change, he acted out in his self contained room after months of great days and he definitely acted out at home as well. After a few rounds of email exchanges and discussions with his teacher the plan we were so proud of creating was scrapped.

Lesson Learned: There is no such thing as an air tight plan, especially when it involves one of my spectrum kiddos. Yes, his teacher, his therapists and I want him to return to a gen ed environment and believe he can - eventually. It won't be this year, and that's okay. If spending another school year in the self contained room is what he needs to build his confidence, social skills and his ability to recognize when he's approaching sensory overload then that's the plan we need to follow. It doesn't hurt that he also saw us accepting a change to plans without anger, tears or screaming, either. Lead by example, right? :)

Don't Wait Until It's Too Late

Each graduating class at our high school has a vice principal, guidance counselor and academic coach that will follow them throughout their four years. I'd like to go on record as saying that this concept is GENIUS! The academic coach for Team 2015 is amazing, patient and FREE. Once a week, son #1 spends an hour after school with her doing geometry test corrections, homework and reviewing material that he hasn't quite mastered yet. Was he happy with me for making him go to after school tutoring? Nope! Trust me, he made his displeasure well known. But I love him enough that I made him go anyway. He's a teenager, I have many years of him not liking my decisions regarding his activities ahead of me. My Mom assures me I'll live through it and that grandchildren are God's reward for surviving your own.

Lesson Learned: Don't wait for your child to say they need help with a subject because odds are they will tell you they don't need any at all. Remember, teenagers only THINK they know everything. The high school years require just as much of my attention and involvement as the earlier years, if not more. Also, bookmark some good math help websites. If you are anything like me you'll be using them often during geometry homework!

Don't Overlook the Good Stuff: My daughter in 3rd grade is the "easy" one of the Crew. Okay, so she has her mother's penchant for talking, a lot, which can be a little problem if the teacher is talking. Other than that tiny little thing, she's an academic and behavioral cake walk. We're talking straight A report cards and empty tally/dart/demerit charts nearly every day. That has led to her not getting an equal amount of my attention as the boys do on most days. When that realization slapped me in the face it was a wake up call and it was loud. 

Lesson Learned: The fact that Miss S doesn't require the same amount of academic and behavior attention from me doesn't mean she needs it any less than the others. 2012 is going to be the Year of Praise and Recognition for Miss S. She's feisty, social, smart and has a huge caring heart and I'm going to remind her of those things much, much more often.