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.     

Tuesday, December 27, 2011

I Can't Be the Only One...

Today, as we enter the second week of Christmas break from school, I'm going to share one of  my biggest parenting flaws. Judge if you want, but we all know you have one or two yourself.

I'm one of the best there is at dealing with my children's meltdowns. I care for kids who puke for 24 straight hours, without ever hitting the toilet or garbage can in front of them, with compassion, ice chips and cuddles. I'll read 5 books aloud in one sitting, make costume pieces for school music programs and spend far too many hours on eBay to locate "the HAVE to have" item on one of my kiddos' Christmas or birthday lists that was last manufactured in 1996. So far, so good, right? Just please, dear God in Heaven, please don't ask me to play with you.

That's right, I am the mom who cringes when I hear "Will you play a game with me?" I enjoy UNO and Monopoly just slightly less than grocery shopping in the rain. I would rather scrub the toilets and surrounding floor (remember I have 4 boys under 15 years old) on my hands and knees than play with Fisher Price Little People, Thomas the Tank Engine and Barbies. And video games? Really not my thing - ask my son C, he'll tell you that not only do I not like them, but if conned into playing one I'm asked to quit pretty quickly because I "take stink at it to a whole new level".

I have moments of guilt when I think about how often I beg, plead and wiggle my way out of playing with one or another of the Crew. Sometimes I even force myself to say yes to a child's request, usually when I'm more desperate for a few minutes without whining than I am to avoid the toy or game of the day. During those times, I'm usually looking for a quick escape or way to get another sibling to play and get me off the hook.

My brood won't have a wealth of memories that include me rolling dice, dealing cards or using a character voice while pushing trains on a track or changing Barbie's clothes for the 24th time in an hour. I'm hoping the ones of me scrubbing carpets at 2 a.m. when they were sick, knowing when to give some deep pressure squeezes and reading the same book 12 times in one day will help them forget me hiding in the laundry room every time the game cabinet was opened.

Sunday, December 25, 2011

BEST Christmas Eve Ever!

I should be sleeping, but the gallon of coffee I consumed from 8p-12a hasn't totally worn off yet. Gifts are wrapped and under the tree, stockings are stuffed and visions of sugar plums are dancing in the heads of my babies. It is QUIET, and that gives me some time to reflect and think. And drink some decaffeinated coffee ;)

Today was the BEST Christmas Eve I remember for many, many years. And I know exactly why. I let go of every expectation and "normal" tradition related to the day and evening before Christmas.

Itchy, matching, expensive clothes worn for a photo session that leaves me aggravated and the kids even more aggravated were skipped - it was a PJ day here for most. The huge feast that I cook and clean up, after rounds of "do I HAVE to eat that?" was traded in for pizza night, which elicited no complaints and far less dishes. We had each other for company, and that was plenty, especially for the ones who had their engines running at supersonic all day.

Guess how many Christmas cards I sent out this year? ZERO! To be perfectly honest, I'd rather tell you Merry Christmas via the internet or face to face than sign, address and pay postage for cards. One less thing to do this season lessens the stress and frees up time for other things, like writing a blog post!

The one tradition we held was letting the Crew open their gift from us this evening. Years ago, we instituted the Christmas Wishes Rule: one gift from Mom and Dad and three gifts from Santa. If your list has a high ticket item, like an iPod Touch, you get one gift from Santa. I took this gem from a friend during my oldest's preschool years: "If three gifts were enough for the Man who saved your soul, it's plenty for you." There's no surprises Christmas morning - what you asked for is what you get. In our house, eliminating surprises is a very good thing!

I spent a lot of years stressing and jam packing "fun" activities into Christmas Eve because I was worried I wasn't creating wonderful Christmas memories for my children to look back on as adults. But you know what? I'm betting they will remember the year Mom wasn't cajoling, bribing and finally demanding that everyone look happy and at the camera for just two minutes. They're going to remember lounging in pajamas, with no scratchy tags, no too hot sweaters and no rushing out the door to get somewhere. They will remember that Christmas is about Jesus' birthday, not about the number of gifts you receive. They will remember being allowed to watch Christmas specials and play video games while eating pizza. I think they will remember this as the BEST Christmas Eve ever.

Thursday, December 22, 2011

My Children are NOT Soup Cans

In the past couple of weeks there has been a surge in articles about children being labeled. It least it seems like a surge to me. The LA Times, The Washington Post and an Australian newspaper all published stories about special needs children and their "labels" this week. With each new story I became more and more irritated with the word label. Here's why:

My children aren't soup cans, they don't have labels. My children with atypical neurology have DIAGNOSIS'S. In my world there is an enormous chasm between those two words. My children don't walk around with their nutritional value or calorie amount plastered on them. Not one of them have a bar code on their body.

The media outlets have worked very hard lately to make the general public believe that parents raising children with autism and ADHD are consummate scammers who spend their time finding doctors who will make bogus diagnosis's and prescribe a variety of unnecessary medications, demanding services from schools that their child doesn't truly need and, let's not forget, milking the system for SSI payments and medical/psychological services.  And after impugning the character and questioning the motives of parents they've never met or spoken with, they have the audacity to call parents to task for LABELING their child(ren)?! In the words of my 12 year old, the media can bite me.

My son who has a diagnosis of ADHD was privately tested, to the tune of $2,600, when he was in first grade. He attended a private school, so we elected to pay for testing rather than wait for the school to arrange testing through the public school. I'm pretty sure his teacher would have placed him in the front of the room, near her desk if I had known to ask. Yep, that was the big ole payoff from school he got for 6 hours of evaluations and we got for paying more than $2000. Would I go back and change it - HELL TO THE NO! We learned how to help him learn, we learned how to help him manage his "ants in his pants" and we learned how to help him become more organized. Worth every penny. (Don't worry taxpayers, he has, nor has ever had, special services, extra time on tests or anything that costs you a dime. You can sleep easy now.)

Let me tell you, child birth was easier than getting a diagnosis for my 12 year old son with Asperger's syndrome. I began talking to his doctor when he was 15 months old about behaviors and expressing concern over how rigid he was in routines and play. At six he was in counseling with a psychologist for anxiety. When his behaviors continued to worsen both at home and at school our pediatrician referred him to a pediatric neurologist who said that he had obsessive compulsive disorder to such a degree that any other issues couldn't be identified until that was under some kind of control. After three years of seeing therapists, pediatricians and a neurologist he was medically diagnosed as having Asperger's syndrome, which is a form of autism.Then we got to enjoy the nearly year long battle to have him evaluated by the school system for an autism spectrum disorder. Remember, a child doesn't receive services at school until they have an EDUCATIONAL diagnosis. Does any of this sound like a walk in the park to you? Like I had doctors and a school system tripping over each other to "label" my child?

I readily admit that Little Man's diagnosis was easy. When you're taking a pre-school aged child with you to big brother's IEP meetings, behavior intervention plan meetings and functional behavior analysis meetings he becomes well known. When he spends those hours under a table squeezing himself into the tiny space between chair legs, won't make eye contact while speaking to familiar people and has meltdowns when his nap and snack routine has been altered by these meetings the autism consultant notices. So yes, he was "the easy one" in terms of being diagnosed.

My boys have diagnosis's that have then led us to the resources that will help them become independent, self sufficient adults. And guess what? A LOT of those resources have been books I've read, internet research I've conducted and advice from other parents who have the same issues at home and school. So again, do not lose any sleep members of the media and taxpayers, you paid for none of that and it didn't affect YOUR life in any manner.

I don't walk into your office and slap a label on you of ignorant, uneducated or uninformed, please show my children the same respect. Should ignorant, uneducated or uninformed ever become diagnostically possible, I will be sure to refer you to one of the specialists we know. 

Wednesday, December 21, 2011

Glitter - Tiny Pieces of the Seventh Circle of Hell

I have a daughter who'd make Martha Stewart proud, and she didn't get that from me. She is an 8 year old art addict - if it can be cut, taped, glued or painted she's on it like white on rice. I indulge her sweet little heart of an artist in every way possible, UNLESS there is glitter involved.

I have two theories of where glitter originated. 1) The Seventh Circle of Hell occasionally has pieces break off it and those pieces crumble into tiny shiny fragments that Satan himself then blows to earth. 2) A pre-school or elementary teacher invented glitter as their ultimate tool of revenge against parents.

Once a project with glitter enters your home, it's all over. Never again will you have a floor that doesn't sparkle, clothing that doesn't look like you raided the Kardashian sisters' closets or food that doesn't shimmer under the kitchen lights. You've heard the saying "it reproduced like rabbits"? Glitter makes a mockery of that statement.

There is no vacuum made that has enough suction to suck up glitter. Mop it up? Forget it! A mop will just redistribute the twinkling pieces to another portion of your tile or wood floor. You will leave your home looking like you're ready for 70's night, forever. You will think after dusting, vacuuming, steam cleaning carpets, sweeping and mopping that you have FINALLY eradicated your humble abode of the evil presence, and then you will find MORE. Suddenly the mere mention of Las Vegas, awards shows and Mariah Carey will make you cry unabashedly.

You want to tick off someone royally? Put glitter in the card or letter you send them. As these surprise glitter attacks become more common, people are beginning to think of party invitations and Christmas cards like letter bombs. "DON'T open that - It may be loaded!" Opening what was once anticipated mail becomes a lesson in how to don a Hazmat suit. If this horrible trend continues, authorities may have to train and deploy Glitter Squads for the protection of sane people's homes.

I realize that there will always be glitter fanatics. Should there come a day when it is unlawful to have and use the abhorrent craft material, an underground black market would surely arise. None of us want that. Instead, I propose creating glitter free zones. The No Glitter logo could be displayed prominently on front doors, children's backpacks and mailboxes. All the sparkly loving people can glitter each other to death - just leave the rest of us to our shimmer and shine free existence.

                            JUST SAY NO TO GLITTER

Monday, December 19, 2011

Openings Still Available...

I actually wrote this a while ago as a note on my Facebook page; a few edits later it is now today's blog post. Apologies to those who read it then and are now reading it again! Today, it is a very appropriate and relevant post about my house ;) I hope you enjoy it!

I have decided that I cannot be the only mother/wife on the planet with family members who need some remediation regarding household jobs. In an effort to help my friends keep their sanity (and see the floors and counters in their homes) I've decided to form the Owens Institute for the Chore Challenged. Below you will find classes currently available:

Treasuring the Empty Trash Can - If it's overflowing it needs to go out the door!
If the item you are trying to place in the trash can has to be balanced on the overflowing items already spilling out of the can, it's time to take the trash out! This course will cover how to remove the overflowing bag from the trash can, take said bag to the proper disposal area and place a new, empty bag in the trash can. Pictures of full vs. empty trash cans will be provided for reference.

Toss It In! - How to find and place your dirty laundry in the hamper/basket/pile all over the laundry room
While this comes as a shock to many a family member, it is NOT ok to disrobe in whatever room you happen to be in and leave the pile of clothes at your feet. Course will cover appropriate places to undress and where to place dirty clothing once removed from a body. Students will be provided with pictures of appropriate places for dirty laundry; please send either written directions or a map detailing the route to your laundry room/laundry hamper as many students are clueless as to where these things are located in their home.

Clearing a Path to Pleasantness - Basic picking up of items on the floor and returning them to their home
I've seen it a million times. Family members who will make a death defying leap over a pile of toys, or dishes that somehow made it to the family room floor, instead of picking the item(s) up off the floor and returning them to their appropriate place in the home. If you've been (or taken someone) to the ER for injuries related to tripping over toys, this is the course for you! Emphasis is placed on first noticing the pile on the floor and then recognizing the proper location to place the item.

Make a Match - How to place a PAIR of shoes in a location where you can find them again
If I had a nickle for every time I went in search of a shoe that was "lost"....Students successfully completing this course will recognize two matching shoes and master the art of putting both shoes, together, in a predetermined spot where they will be found with ease the next day. Students will need to wear/bring a pair of matching shoes to each class.

Sanford and Son Sabotage - Look! There's a lawn under all that stuff!
If you currently have enough bikes, scooters, balls and other outside toys scattered across your front lawn to cause people to think you are having a yard sale, you are not alone. Participants will learn the proper procedure for placing their outside playthings in a garage or other designated area. The use of bike kickstands, where to place a helmet so it can be found the next day and how to ensure there is room left for parking a car in the garage will be extensively covered and practiced.

1. Students must be out of diapers and able to use the bathroom without assistance, regardless of the age of the student.

Sunday, December 18, 2011

What is Autism, by my Son with Asperger's

My 12 year old son who has Asperger's syndrome has a friend coming over today! Only my friends raising a child with an autism spectrum disorder can understand why this is so freakin' exciting for me - and him. His friend has Asperger's as well and his mom and I sometimes call them "brothers from another mother" LOL They met this year in their self-contained classroom and immediately hit it off. Today is the first time they are spending time together at one of our homes.

Last night I shared on Twitter and Facebook that my son asked for a tux to wear today. "I need to look my best. It's an important day!" I bounced between wanting to laugh and wanting to cry. The fact that he sees having someone come play with him as an event worthy of wearing a tuxedo breaks my heart.

Anyway, this morning as I was convincing him that "regular" clothes would be absolutely fine to wear I began thinking about the piece he wrote (ok, he dictated with me serving as the writer) that was read to the entire sixth grade at his middle school at the peer awareness session held during Autism Awareness week last year. His teacher and I barely held our tears in as it was read, we were so proud of him! Today, I wanted to share HIS view of having an autism spectrum disorder with you. 

This is Christopher's 'What is Autism' piece written for his teachers and peers. I am so, so proud of him! 

Autism is a challenge. On the outside I look and seem like a normal person, but sometimes I have severe emotions. Sometimes I get angrier than I should. When I feel overwhelmed I might run away or hide from the problems. I mean that literally! (That doesn’t mean I am a wuss!) Sometimes I am inappropriate, but I don’t mean to be. I sometimes don’t know what I said or did was inappropriate until you tell me.

Sometimes I learn things way faster than other people and sometimes it takes me longer to learn stuff than other people. I do NOT like working in groups! I like to do things solo.
I have an above 10th grade reading level – I LOVE reading!!! I have a huge vocabulary and I like to talk, A LOT. I can spell almost anything. I hate writing anything that is long, like a paragraph. I type my assignments when they are long.

I have habits that hinder me. I squint my eyes even though I don’t need to – it’s hard for me to remember not to do that. I always have to put my left foot down the stairs first. If I don’t I have to go to the top of the stairs and start back down again.

I take things you say very literally most of the time. I am working on not taking everything so literally. I am new to the world of sarcasm but I understand sarcasm more often now.

I don’t have many friends and I stink at making friends. I’m relatively good at keeping them when I have one. I currently have 4 friends. I like being noticed and sometimes I act weird. I do that on purpose to try and make friends.

I want to have more friends. I don’t like it when you criticize or tease me. It makes me feel bad when you pick on me. Having autism doesn’t mean I don’t have feelings just like you. I am like you in a lot of other ways too. I hope this helps you understand me better.

Footnote: Autism is not contagious. Thou art not at risk of catching it.

Saturday, December 17, 2011

A Special Needs Parent's Christmas Wish List

The Christmas break from school has begun for most of the families I know. Along with that, parents of special needs children also have the challenges that come with disrupted schedules, changes in routines and the general feeling of anticipation and excitement floating through the air that tends to throw our kids WAY off balance emotionally.

While reading and replying to tweets made by my support system of "people who get it" this morning, inspiration for this post smacked me right upside the head. To all of my friends, those I've met face to face & those who I know and love through the miracle of social networking, these are the Christmas gifts I wish for you. I'm sending them wrapped in gratitude and hugs :)

1. An offer of a break for a few hours. I hope someone who knows, loves and can be trusted to care for your wonderful child will call you and say "Why don't you take the afternoon off today? Have lunch with a friend or your spouse, shop without a child in tow, take long bath and a nap. Don't worry, we'll be just fine!"

2. A Stranger's Compassion. While running errands, or grabbing a meal out, when your child begins to meltdown, flap, squeal or be far too loud I hope one person gives a sincere smile and says "Is there something I can do to help? I could stand in line for you or bring your tray to your table."

3. A family member or friend who ASKS to be educated about your child(ren).  I hope someone in your circle who has never really understood your child(ren) says, "I don't know how you and your child feel, but I really want to understand. Can you tell me more about autism/ADHD/sensory issues? What websites and books do recommend?"

4. An unexpected moment of joy. I hope that you have a moment where your child does or says something new that leaves you glowing and reminds you that all the SLP, OT, PT, tutoring and social skills lessons are more than worth the drive, cost and time you've spent on them this year.

5. Belief and Hope. More than all of the above, I hope, pray and wish that you believe there are people who understand, get it, feel what you feel and care about you. I hope you believe in yourself and your decisions for your child. I hope you realize that YOU are the expert on your child, and doing the best you can with what you have equals extraordinary parenting. I wish you hope and faith to feed your soul on the rough days and fuel you on the exhausting ones.

Here's hoping all my wishes for you come true!

Friday, December 16, 2011

Note: This is one of the most difficult blog posts I've EVER written/posted. It has taken me two days to get my thoughts in some semblance of order and calm my fury enough to put them into words. No promises, but I'll do my best to keep my anger under control while I write.

The LA Times is currently running a four part series on autism. One part of this series focused on whether there is an increase in autism or increase in the diagnosis of autism. An entertainment attorney commented on the article saying:

"Many parents today want a diagnosis of autism spectrum for their child, not only because there is a great deal of funding allocated for services for those children, as the news article explains, but also because this qualifies the child or family to collect a good SSI payment each month. If a family can get a few kids diagnosed with such things, the family can live off the payments. This was caused because welfare payments are so low, welfare is so hard to get, and intact families with both parents present do not qualify for welfare. The real story would be to check out what percentage of families with child with an autism diagnose are collecting SSI. That is where you will find the real secret behind this "epidemic." Also, school districts that will receive extra funding for each child with autism will be far more likely to make such a diagnosis.When I was a kid, there were kids who kept track of details, counted things, paid little attention to others, and seemed socially awkward. There were called future accountants.I realize there are actual cases of autism, which seems to be a form of retardation. A lot of this spectrum stuff, I think, is based on wanting to collect available funds, without regard for the fact it stigmatizes the children for life to have such a diagnosis.Anyone who writes a scathing reply should reveal if their family is collecting SSI or if they or their school is in any way collecting funds based on autism."

The portions of this uninformed, ignorant person's comments that truly set me off are the highlighted sentences. The entire diatribe is offensive to both parents of and children on the autism spectrum, but my focus is on the over-the-top moronic statements. If I covered the entire comment this would be a novella, not a blog post.I have wanted a lot of things in my life but never ONCE did I WANT my child to be diagnosed with a neurological condition so our family could roll in the big bucks of SSI. And as we all know $679.00 per month (the max SSI monthly payment) puts you in that upper 2% tax bracket if you are "living off the payments". I can assure you that NOT ONE family who receives SSI payments for their autistic child is now living high on the hog. And to say that parents chase down a diagnosis of autism for a whopping $679/month is cold, cruel and disgusting. There is NO SHAME in finding and using every resource available to help your child with autism!

I have to hit on the schools receiving extra funding portion of her comment as well. In our school district the Autism Consultant position was cut from the budget this year, even though we have had an influx of children with autism both starting school for the first time and current students who have been recently diagnosed. Our district shares ONE OT with six elementary schools, 2 middle schools and a large high school. Speech Language Pathologists are shared among schools and we have had special education aide positions cut. The staff my children work with are remarkable 99% of the time, but let me tell you the school was in no hurry what so ever to give either of my boys an educational diagnosis of autism. In fact, my oldest child on the spectrum had a medical diagnosis for nearly a year before I could even get the district to agree to an evaluation for ASD. I am not always the biggest fan of our district's decisions, but I know for a fact that they aren't handing out educational diagnosis of autism left and right.

Autism is a form of mental retardation?! WHOA! I'm sure in the pursuit of a career representing entertainers she has amassed a great deal of knowledge on entertainment law but when it comes to autism she is a Grade A Moron . I can say that with great confidence because my 12 year old son with autism spectrum disorder has been called things such as genius, gifted and brilliant when it comes to academics. He has the social grace of a six year old most days, cannot function in the general education environment YET and is the stuff of legends among staff members at two elementary schools and one middle school because of the things he says and his penchant for (a) locking himself inside his locker and (b) running when he becomes stressed or upset. (The child hurdled the Dean of Students last year while running from a situation. I'll tell you all about that another time, promise.) So you can trust me when I say that autism IS NOT a form of retardation.

Let's discuss the "stigma for life" that accompanies an autism spectrum diagnosis. Perhaps instead of making wild unfounded and hurtful accusations against families who already have more than enough to deal with on a daily basis, this attorney could her voice and time to DESTIGMATIZE an autism diagnosis. My boys on the spectrum are hilarious, bright, loving people. Stigma is defined by as "1. A mark of disgrace or infamy; a stain or reproach, as on one's reputation. 2. Medicine/Medical A mental or physical mark that is characteristic of a defect or disease."Autism is not a defect, disgrace, stain or reproach of a child's character. Autism is a disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behavior (definition taken from Wikipedia). So take your stigma and shove it where the sun don't shine. (Sorry, lapse in anger management skills there.)

The major problem with comments such as those made by this ignorant woman is that others read her misinformation and then feed their negative perceptions of autism. Yes, autism is a pain in the ass some days. Winning the battle against autism demands hard work from a child, their family and teachers every day. It's frustrating and it's exhausting for everyone involved a lot of the time. But autism sure as hell isn't a money making endeavor, form of retardation or a stigma.

Before making generalizations and comments about autism I strongly suggest reading this article It will save you a lot of embarrassment and maybe even each you a thing or two.

Monday, December 12, 2011

What's Your Playlist for Life?

I freely admit that I am addicted to my iPod nano. Music is like therapy for me, only cheaper and I don't have to make an appointment to reap the benefits. To say my music library is eclectic may be an understatement, but every playlist has its place in my life depending on my mood - or which kiddos are in the car with me.

The Phantom of the Opera and Les Miserables Broadway recordings take me back to the time when all my extra hours were spent on stage, auditioning to get on stage or working on a show coming to the stage. Life was good, with friends who sang loud in the car and ran lines with me until we were as perfect as high school theater students can hope to be.

When I listen to the playlist full of Phil Collins, Def Leppard, Kenny G, Madonna and various other icons of the 80's and early 90's and close my eyes I am immersed in my college memories at Ball State. Lazy afternoons at the Duck Pond, my days serving as an intern for the state senate, and (Mom, don't read this part!) weekends spent with a college boyfriend. I often THOUGHT life was hard back then with my 16 credit hours, job at the Awful Waffle (that's the Waffle House for those of you who don't know) and my heart broken a couple times over four years. If I knew then what I know was a cake walk compared to "the real world"!

Since becoming a parent of five extraordinary children, some which face neurological challenges, music has taken a different meaning. I use it to convey a message I can't say any better than the artist has, to soothe a restless body and soul and to inspire me. So, tonight I chose to write about the playlist of my current life. Some you may know, some you might not, some you will like and others you will despise. I hope my list will make you think about the songs that play in your life's background. I'd love to hear your list, too :)

My Life Now Playlist
 1. You're Gonna Miss This, Trace Adkins - Hard to find a better song to remind me that one day I will sit at home wishing I could do it all over again

2. Life is a Highway, Rascal Flatts version - When my youngest, who is on the autism spectrum, had pneumonia we watched Cars for five solid days - I'm NOT joking. If his eyes were open, it was playing. I will forever love Lightening and Mater for helping us muddle through a miserable, worrying week.

3. Firework, Katy Perry - I actually printed the lyrics to this song for each one of my brood. If you've never heard it, go listen now. If I had my way it would be the Special Ed Anthem.

4. Boogie Shoes, K.C. & the Sunshine Band - Believe it or not, this was my current 12 year old's lullaby of choice. In fact, swaddling him tightly and dancing around the room to this was a sure fire way to calm him as an infant - and yes it HAD to be this one song.

5. Sweet Baby James, James Taylor - My oldest was a very fussy baby, but pop in James Taylor's Greatest Hits and poof! The screaming at least fell to mild whimpering. He won't admit it, but he still likes it sometimes, 14 years later.

6. I Hope You Dance, Lee Ann Womack - This was a huge hit when my only daughter was born. I have a book and CD special edition of this to give to her when she graduates high school. Beautiful, perfect lyrics for any child but especially your little girl(s).

7. Superman, Five for Fighting - "It's not easy to be me" Every time I listen to this I remember that my babies with neurological impairments, like autism & ADHD, need me to understand that it's not easy to be them. It's a good reminder for me on the days when I want to scream as loud as they do during meltdown mode.

8. Hit Me With your Best Shot, Pat Benatar - A nice solid kick in the butt when I'm moping about things I can't change.

9. Hysteria/Pour Some Sugar On Me, Def Leppard - Tired goes with the territory, but these are guaranteed to get me moving, singing along and smiling.

10. Landslide, Stevie Nicks - Not only is it ok, it is necessary, to occasionally give yourself a few minutes of a pity party. There are not enough pharmaceuticals on the market to make a person strong, happy and content with their life 24/7, 365 days a year. This song is my cry in my coffee pity party time. I believe everyone should have their own song or two for this purpose, then when they're over you pull yourself up and get the job(s) done.

What is on the playlist for YOUR life? Remember, friends share :)

Sunday, December 11, 2011

I'm Thinking of Forming my Own Villiage

Just yesterday I told a fellow blogger/parent of ASD children that I'd love to be her neighbor. Imagine it - living next door to someone who "gets it"! The more I thought about this, the more the idea has grown into a fantasy of sorts.

Maybe we could name it Nirvana Neighbors, or perhaps Get It or Get Out.  The whole thing has taken on a life of its own in my mind today. An entire subdivision dedicated to families who experience life differently than the majority of families (insert sound of dreamy sigh here).

The bus stop would be full of children clinging to their parent or trying to dart far away and not one person would shoot the "can't you control your child?" look at you. Seeing a six year old dash out the door in Batman underwear, and that's it, would get chuckles from the neighbors, maybe a "Little Guy, I think you forgot something today" comment with a smile, but not the "LOOK AT THAT KID! Where are his parents?!?" scream from the mom across the street.

When neighborhood kids get together everyone expects that it will be mostly parallel play, with the occasional "You aren't following the RULES!" screech. Neighborhood parks would have multiple electric outlets, because hey, playing on the iPad/Nintendo DS OUTSIDE the house is a step forward. Overgrown lawns, or lawns that have more bare spots than green spots, wouldn't cause a single eye to bat. It would be common knowledge that overgrown lawns are due to a child who HATES the lawn mower's noise and the family has to wait until said child is not home to mow; bare spots are simply signs that a family has more important things to spend time and money on than grass, which by the way, would have to be mowed.

Whispers of "does he/she own any other clothes?" would be non-existent; it would simply be understood that some of the kids refuse to wear anything else and never questioned that said child's mother washed and dried his uniform of choice every evening. Mothers who showed up at the park, bus stop or local store dressed in matching fashionable clothes with hair and make up perfect would be the ones looked at like aliens from another galaxy. In fact, in this neighborhood, if you look like that the rest of us would assume you've had an experience that surpasses orgasm and we would feel no guilt in dropping our child/ren off at your door while we showered and brushed our hair and teeth in the same sitting.

There would be an extensive screening process for families wanting to join our little village. A questionnaire with things like:

1. What do the acronyms SLP/OT/PT/BCBA/ABA mean? How many of these do you know and are they good?

2. Have you said the phrase "If that were MY child..." since becoming a parent? If so, when and explain the circumstance in which it was said.

3. You see a child throw himself/herself on the ground, yell "I hate you! It's not FAIR!" and an exhausted, exasperated parent at the park. Do you:
A.) Look with disdain at the parent with your hands on your hips
B.) Run like the wind in the opposite direction
C.) Smile genuinely at the parent, stand next to them and ask "Can I get you a coffee or Xanax?" with a knowing laugh

4. Do you know what an IEP is? Can you read and write goals for one? Please provide recent example.

5. Is any member of your household a therapist, attorney, special needs advocate, physician or bartender? Are they willing to be on-call for emergencies involving neighbors?

If you happen to know anyone with millions of dollars who would like to bring my dream to fruition send them my way. In the meantime, I'd love to have all of you who get it become my virtual neighbor. I'll even throw you a welcome to the neighborhood virtual party :)