Not just my stomach growling today...

So we ate at a family friendly restaurant today and Z did great; he sat in the booth instead of standing or kneeling.  He didn't turn around to mess with the people behind us. He made a few sounds here and there (one of which was a rather loud belch but he's 6 and because of his delays body functions are still something that just happen to him as opposed to him sensing them ahead of time) he then loudly shushed back at us when we shushed him and had the volume up a little loud on his I-pad off and on but that was an easy fix.  He sat through the whole meal, ate his food and when it was time to go said, "Home, Home" in a whiny voice but not a big deal.  There were other kids in the restaurant making way more noise, fussing, running around; by all accounts Z was the best behaved child there.  (He typically is)...

So why then does my child get the royal stink eye from the patrons as he's leaving?  Why do we get judged as parents and looked at like failures, and have strangers shaking their heads at us?  From where we're sitting we're proud of how amazing he just did.  It's taken hundreds of hours of emotionally and sometimes physically draining work, therapy, patience, sweat, tears and oddly enough sometimes some bloodshed (he used to bite and scratch) for our son to be able to walk into a restaurant let alone sit through a whole meal.

I'll tell you exactly what it is.... The typical children are using actual language which our brains can easily process and tune out for us.  They make noises and or behave identical to my son but in comparison go undetected in the same room because it's age appropriate behavior for them whereas for Zander it is not.

In a social setting like a restaurant when our son makes noise it's often toddler-ish in nature because he's behind verbally and when you pair that with the visual picture of him being 6 and not an infant it catches your attention and the brain has a harder time tuning it out because the brain is telling you that what your seeing is incorrect.  So what you see is a 6 year old acting like a 3 year old but what you don't know is that on the inside that's what he is!  It's not that we're bad parents, we're working with him on his level with the abilities that he has. 

I wasn't upset until I saw that it upset my husband and as an after thought I really wish I'd gone back in and politely explained Zander to her.  Maybe she would have shone some kindness then or felt bad or maybe she would have said something horrible; I'll never know.  I almost want to start carrying business cards with the mAUmTISM blog address on them so that I can just hand them out in situations like that with a smile and then be on our way. 

I really wish I could go back in time today because I would have paid for her lunch and walked Z back over, crouched down with him and had him say hi and wave and smile and then I would have turned to her and said, "I bought your lunch today in hopes that you'll pay my kindness forward the next time you're out at a family restaurant or grocery store and you see a weary looking family whose child is acting a little differently.  This is Zander, now you can tell people you've met someone with Autism and how amazing it was that he sat in the restaurant booth next to you, even though the sounds and lights physically hurt his ears and eyes, not fussing, minding his own business eating his food and playing his I-pad unlike the other children whose parents don't even seem to care how out of control they are."

I hate hindsight sometimes, it's ok though because next time I'll be ready to show them the kindness that they weren't able to show my son.  Half of the battle with Autism lies in the duty of Autism parents to help educate the public.  In my book you don't get to complain about a problem if you aren't willing to be part of the solution.

We have a crazy few weeks ahead, big changes, new school, packing, moving, unpacking, losing Z's longest running ABA tutor, possibly (hopefully) gaining a very familiar face as a new tutor, and I know there's more but I'm too tired to remember them all... so keep us in your prayers and wish us luck and if I happen to open my door to find a lovely anonymous glass of wine with my name on it that could be good too!  ;) just kidding... or am I? 

We have Ears, Say Cheers to the Happiest Place on Earth!

We've been waiting to take Z to Disneyland because we wanted to make sure he'd get something from it and that he'd have wonderful memories.  He's been super into Mickey Mouse Clubhouse and My friends Tigger and Pooh for the last year and a half.  He watched the shows before but now he actually comprehends their lessons and interacts with them. Yes he's too old by typical standards... he is 6 1/2 and should be watching Ninja Turtles, Lego's Star Wars, and various super heroes... but that's just not where he is at.  The fact that he is comprehending the toddler shows the way he should have 3 years ago at all is a blessing.  With Autism we've learned to understand that Better-Late-Than-Never is perfectly OK.  Yes he's behind but the focus has to be on the fact that he continues to make progress, learn and grow.  There are parts of him that are hyper accelerated in their development and parts that are still way underdeveloped.  Welcome to Autism it's truly an enigma. We're in a Marathon not a sprint here and we have a whole lifetime to get him where he's supposed to go.

Anyway... back to Disney!

So this is the year because he knows all the characters and also watches several Disney movies.  I was so nervous:  would he be able to handle the sensory overload with all the people, sounds, movement and the heat of the July weather?  What about the waiting, the dreaded waiting?  My sons concept of time is that of a two year old, 5 minutes may as well be 45 minutes to him.  He's come a long way and can handle a good 10-15 if we really have to, but once he's done y'all better look out because he will melt down and it's just over at that point.

In the past I'd heard about a disability pass that other Autism parents had been able to get so that the wait time for rides would not take as long but then a national news story broke a few months ago about wealthy people hiring people with Autism and other disabilities to get the pass and then take their perfectly fine children and families through the disability lines.   To say I was disgusted by that is an understatement, not just with the typical people but also the disabled people who find no issue with abusing such a wonderful privilege.  I was worried that this story was going to ruin it for those of us who really need the pass.

We made the walk from our hotel to Disney, through the initial check, bought our tickets then through the main gate we went and promptly got in line at the Town Hall. My stomach was in knots, I was so nervous and I didn't know if I should bring Zander with me or not.  Z looks normal, what if they didn't believe me?  I decided to chance it and after a short 4 minutes we were in front of a Disney Employee asking for our pass. My mouth was dry and I stumbled over my words to explain why he can't wait 20/30 minutes in line and offered up a copy of his diagnosis and was prepared for rejection when as if on cue Z started verbal stemming and jumping around like a monkey.  I've never been so happy to see his Autism behaviors before in my life lol!  The employee was so sweet and asked how many were in our party and then gave us the pass.

That's where Disney has it wrong and that's a big part of how their kindness is being repeatedly abused.  We have a let's see what we can scam and get away with for free mentality in our society... who's it gonna hurt? Well it can hurt plenty of people actually.  The passes should only be for the the disabled person and one to two parents or caregivers and then any siblings that are with them period.  Not extended family, aunts, uncles, cousins, friends and if the person with the disability isn't actually riding the rides then they shouldn't be allowed the pass either.  We saw blatant abuse of this system all day.

I almost threw down with two women old enough to be my own grandmother at the dumbo ride!  It was our last ride of the night.  Zander had made it through the whole day at the park, back to the hotel for swimming , back to the park for fireworks with zero meltdowns and all he kept asking for that night was Dumbo, Dumbo and more Dumbo.  Between being herded and corralled like sheep for the fireworks and then the wait for Fantasy-land to reopen afterward he'd already waited so long, like a champ and he was so excited to finally be in line at the Dumbo Gate.  I was so proud of him and we were in the home stretch but had to wait just a bit longer because the attendant explained he'd already done the head count for the upcoming ride but that we could go on the one after that. "No problem" I smiled at him and then whispered to Z, "You can do it Z, just a bit longer"as I applied some deep pressure squeezes to his shoulders and arms. I positioned him at the front of the exit gate with two hands on the rail watching the ride and just kept whispering "Good waiting bud, nice waiting, so proud of you" and was also trying to give him a mental visual by explaining, "First those people will ride, Next Zander will ride, First, Next, First, Next".  He was doing awesome and out of the corner of my eye I could see a wheel chair pushing through the exit line and I could hear the ladies telling people rudely to move out of the way and I knew I was going to be next.

The driver practically ran over my foot with the wheel chair and I calmly smiled and said, "Excuse me but we're in line" and she snapped, "Excuse us, but you need to move." As respectfully as I could because they were elderly after all through clenched teeth I stated that, "No ma'am, WE'RE IN LINE.  We've been waiting here, ask the attendant."  "Move and let us through" the driver snipped, to which I said in a tone that basically says (DUH), "we have a pass"and shrugged my shoulders.  They both start yelling at me, "Um excuse please, you need to move your child! This area is for disabled people only!"

Did you hear that snapping sound?  Yep that's the SHE-HULK ripping it's way out of my otherwise normal neglected pudgy housewife body... This time I actually whipped out my pass and with what I'm sure was one of the ugliest/angriest faces I've ever made because now I'm in Mommy Bear mode; I shove my pass in their faces and yell very LOUDLY and slowly, "MY.... SON... IS... Dissssaaaabbbllleed... WE HAVE A DISABILITY PASS and he has been waiting very patiently so NO YOU WILL NOT go ahead of him, he's 6 and you're what? how old?!"  and then I turned around and grabbed the rail on either side of my sons hands and for a split second honestly felt like I could snap it off.

I heard them gasp and scoff at first in disbelief that I could be so rude to them and then after about 30 seconds a forced attempt at an apology..."Oh sorry there's just people that wait in the exit line and we just thought you were waiting too."  I didn't even respond, I just stayed with my back turned and kept my sight on the attendant who gave me a sympathetic smile because he had witnessed the whole thing.

After a few more minutes we were settled on our dumbo ready to fly and here comes the "disabled" lady up and out of her wheel chair walking perfectly fine to dumbo laughing and 7 (SEVEN) OTHER NOT DISABLED people in her party to get on the ride with her.  She used her age and inability to walk long distances to get her children and grandchildren on the ride even though they were perfectly fine, unreal!

I am so grateful to Disney for that pass, I hope that it is something they will continue to do but I also hope they make it harder to get one, limit the number of people in the parties and required documentation about the disability from doctors, therapists, even school.  It truly made the difference for Z, without it we wouldn't have lasted even 1 ride and Z would have been upset, melting down, probably hitting himself in the head, crying and all that money would have been out the window.  Instead, he rode the rides like every other child there, and it made it so that when he did need to wait in long lines to meet the various characters much easier to deal with. He now has the same amazing memories that anyone who goes as a child has and for one brief day in our crazy life we actually felt like a "normal" family.  Thank you Disney and thank you to all our family that helped make that trip a possibility!  We can't wait to make more memories there with him again next year!

Knock Knock, who's there? Nobody part 2 of open letter about Special Education in our country.

This is essentially part two of my open letter about Special Education in our country... it was already so long I figured I'd break it up for you.  I think I've finally said everything I've been holding in for the last year, whew, sorry to unload but the good news is I probably won't blog again for a while haha! ;)

Knock Knock

(silence)

Knock Knock

(silence)

KNOCK FREAKIN KNOCK!

sigh... "Who's there?"

No

longer sigh... "No who?"
Nobody it seems

.

It's hard enough to get people to listen let alone care in today's society without people from our community making things harder.

What am I talking about?...Over the last 3 months I've seen a trend in articles where it's just all about who to blame and not about implementing changes  that could resolve a lot of problems for both sides.  Nobody is talking about solutions; it's like being in a big hamster wheel of bickering :(

More and more Special Needs families are connecting thanks to social media and sharing their stories with others just like them.  We are no longer so isolated unless we choose to be.  The school districts, teachers and even other typical parents are getting annoyed (which is good because they are starting to realize we are not going away) and they are doing their best to continue to stonewall our families and to push back at us through the media unfortunately using examples of some of our parents and the un-addressed behavioral issues of some of our kids and it drives me crazy to admit that they've made some valid points along the way.  

I hear a lot of COMPLAINING from teachers and parents about the behaviors of our children.  A lot of EXCUSES and as painful as it is to admit... I have to say sometimes the schools aren't wrong.  Here's the biggest statement/issue I keep seeing repeated in articles and it's the main argument that they continue to use against us to keep from changing things for the better:  

"Dealing with Special Needs children is DANGEROUS".
 Most recently I saw this in an article out of the Star Tribune in Minneapolis, where teachers are speaking out saying they feel like they are just expected to be okay with being hit, kicked, spit at , headbutted, pooped on, things thrown at them, screamed at, pinched, punched, hair pulled, bitten and they're right to be pissed about that because there are parents out there that for a multitude of reasons, take your pick, are in denial, are too overwhelmed, don't want to be bothered, literally have no clue what to do and the school system is their only hope, cannot find or what's more common in our states still cannot afford to access therapeutic resources for their children until they get to school  and in the teachers defense it isn't fair; but a good percentage of children are lacking in behavioral interventions and that is not the child's fault.

If it's not being provided at home for whatever reason then I'm sorry to say this but if the schools don't want their teachers going into combat zones on a daily basis they need to start giving teachers the proper training and resources to deal and more importantly to help the children learn to deal with their behaviors.

I hear teachers crying that the parents won't back them up at home and there are plenty of those people out there but it's not right though to make it sound as if all special needs children are mini sociopaths, little spoiled monsters who's parents are absent.  I hear just as many parents with stories about teachers who are borderline psychopaths themselves; just as many stories of parents begging teachers to work with them and their home programs only to meet an over-inflated ego or a complete lack of interest and a brick wall that won't budge.

WHAT I ALSO DON'T SEE in any of these articles I'm reading are any of those people asking for help to actually deal with and ultimately extinguish those behaviors.

I see a lot of blame placed on innocent children that didn't ask to be born let alone born with various challenges who are at the mercy of their families and our society for help.

I see people turning a blind eye instead of addressing the behaviors through a little thing called Positive Behavior Support and Positive BEHAVIORAL INTERVENTION, they continue to use negative outdated methodology like aversive punishments for behaviors (negative abusive reinforcements that are traumatizing to children such as: making children excessively exercise to the point of throwing up and passing out, denying them food, water, access to bathrooms, shoving things that burn into their mouths like hot sauce, or cotton-balls soaked with vinegar, spraying them in the face with lemon water like cats, there have been instances of actual water boarding in our schools, improper use of both physical and mechanical restraints for simple infractions such as non-compliance instead of actual emergency situations often injuring and even in some cases literally killing children and shoving them into locked seclusion rooms like they are Hannibal Lector living in a mental institution and I'm not talking about a 10 minute time out, we're talking for hours with zero access to food, water, bathrooms.)

I only post a handful of the articles I see on a weekly basis so as not to overwhelm people but I need ya'll to know that I see 3 times the articles I share and I see 5 times the stories and pictures from families who didn't make the national media but are just looking to share their child's story so they don't feel so alone.  The pictures I've seen and stories I've read are heartbreaking and I am telling you they are NOT RARE, not by a long shot and it makes me sick.

I see people still using the concept of  punishments for behavior like they would a typical child only on far more abusive levels even though they know our kiddos all have varying degrees of comprehension and when you are dealing with some children who are non verbal THEIR BEHAVIOR IS COMMUNICATION.  You might be looking at a big tall aggressive 12  year old but they could very well have the emotional comprehension of a toddler. So great job people... you just punished a 2 year old like a 12 year old and if I did that at home to the insane degree I've been reading about the last couple years, I'd be in jail for child abuse.

What irks me is that there is a HIGH percentage of children being grouped in the "dangerous and aggressive" category that don't actually have to be there, but to find them you have to stop to look at their individual histories... maybe they didn't have access to any sort of Early intervention, maybe there's no behavioral therapy happening at home.  That doesn't mean that it's too late; it just means that it's going to take a little extra effort to get through to them to get those bad behaviors extinguished. My point with this is if schools stopped being on the defensive and stopped taking the reactionary position when dealing with behavior and instead start being PROACTIVE and doing the hard work to initially address the behaviors; the number of children that they assume can't learn and that are exhibiting aggressive behaviors would PLUMMET!  Schools have just become business first, helping children reach their potential and releasing quality humans into society second.  Don't shrug your shoulders at me!  I see you!  What can we do?  We share more stories, sign more petitions, march in more rallies, send more letters, introduce more legislation.

I'll tell you what we don't do... we don't give up!

Do you really think children want to be in turmoil all day?  They are doing the best they can to express themselves and communicate to the best of their abilities and instead of HELPING THEM we turn our backs and punish them...awesome... really.. you should all be so proud of yourselves.

Why? Because that's what we've been taught by the people before us?  We have a wealth of knowledge about all sorts of disabilities, mental disorders and neurological conditions that the generations before us didn't have; so I can forgive them for some of their choices because they were working with the best information they had... but there's no excuse for our generation to continue like that.  To have the knowledge that we do and still continue to turn a blind eye because it's too hard to change, because we're lazy or because we too afraid to say anything for fear that someone else who's outdated narrow minded or just plain evil might push back at us, it's not OK.

Along with offering Continuing Education for teachers who didn't previously have any courses on behavioral intervention we also need to be more vigilant in our screening processes.  Schools need to be allowed to tell other schools why they have let someone go when there's any sort of issue with mistreatment of children and they need to stop reassigning these individuals to other classrooms.  If you're caught mistreating children in any way you should not be allowed to work with children period.  There needs to be a screening process BEFORE anyone is even allowed to be in a Special Education Classroom.

I've said this so many times; in order to get your teaching certification for Special Education a person should have to undergo psychiatric testing.  It takes very special people, with a certain type of temperament, patience level and an uber compassionate heart to work with special needs children.  Prospective teachers and aides should have to attend anger management courses and be subjected to real roll play classes where for the length of a school day people are brought in to create common scenarios and exhibit common challenging behaviors non stop to see how the person is going to react.

Special Educators should also have to have mandatory monthly counseling sessions with full paid access to counselors any time they might need.  They need a proper outlet for their emotions too because at the end of the day most of them are just humans trying to do something good in the world.  Anyone who is going to teach Special Ed should have to clock several months as a student teacher in an actual special needs classroom.  It's insane to me that so often a person first hands on experience with our kids is the day they set foot in the classroom!  That's not fair to anyone.  

Oh and don't worry I'm not letting parents off the hook at all!!

For special needs parents to drop their children off at school and say, "My child has a right to an education, you figure it out!" is ludicrous especially if they are expecting the schools to fix the child's behavior.  First of all the guidelines for expectations of what a school can and cannot actually do in the realm of Special Education need to be redefined.  Schools need to start sitting parents down and having honest conversations about each child so that the parents truly understand what they can expect even if it's not what they want to hear.  We need to change the laws to define what the right to an education means when a child is dealing with any sort of challenge.  I'm sorry but if they don't already, the laws need to say "to the best of the child's ability"... it might help schools stop feeling like they have to be so underhanded and sneaky about getting around "right to an education" laws and stop focusing all their attention on not getting sued and instead go back to our roots and focus on how to help these children. Sorry little tangent there... back to the PARENT'S! 

If a child's behavior is not dealt with FIRST AT HOME then it's hard for them and sometimes even impossible for them to learn period! Not helping them figure out how to process and self regulate their emotions is not fair to them at all.  Parent's need to take responsibility for that in their own homes FIRST whatever it takes.  This new era of pop em out to have as accessories but then let the rest of the world actually raise them parenting is insane.  

The expectations currently placed on some of our teacher's is too high if a child's behavior hasn't ever been addressed prior to going to school.  By the same hand it's not okay that the department of Education in this country is not stepping up to meet the growing demands of the special needs community with real proactive and POSITIVE solutions.  You have a bunch of teachers who are not expecting to land in a special needs class or have special needs children in their typical classrooms; it's not what they went to school for and as a result there is a crucial part of training missing for them.  Likewise the requirements to get a degree in Special Education for those people who actually want to be there now-a-days needs to be revamped to meet the needs of the community and that includes requiring and helping them to either become behavioral analysts/therapists too or at least be under the constant and accessible supervision of a BCBA. If you can't be bothered to learn anything about positive behavior supports and are unwilling to try new interventions and continue with the old ways then I have zero sympathy for you.

I guess the whole point of this blog is that I'd like for everyone to just stop bickering and start

doing

what's 

best

for

our 

children.

The Gap in Special Education and Autism

June 7^th, 2013

An open letter to anyone involved with or interested in Special Education & Autism in our educational system:

(Or anyone who is just willing to listen):

If we Autism parents are to believe what we’re being sold:  I mean “told” these days by the educators in our country; our very unique children are in great hands with people who supposedly understand how children with ASD comprehend the world differently; they understand that these children think and learn outside the box, and they understand that there are varying degrees of Autism with each child exhibiting different levels of characteristics and behaviors because each child is affected in different ways, AND YET; we continue to label them either A: High or B:  Low Functioning, boxing them into an uncreative and very limited path when it comes to their education and consequently their futures. 

Anyone who has had any real experience with Autism knows that ASD kids can be high functioning in some areas while being low functioning in others.  If we can understand that there is a spectrum in the first place then how do we not address or recognize all of the grey area in between those two labels?

One of the main deficits children living with Autism need help with is learning how to navigate our world socially. This area is huge and encompasses issues with social skills, social behavior, social thinking, and situational social awareness!  We tend to take for granted that the social aspect of our school days is a natural occurring experience for most kids, but for children living with ASD, it’s the opposite, they need help, regardless of level of functionality, WE have to help CREATE those experiences for them!

I’m truly grateful for all that the families before us have sacrificed and done but there’s a huge group of kids falling through the cracks that have learning potential, the ability to go on to work jobs, live simple lives and be contributing members of society; well, that is if we stop being lazy and stop whining about budgets, roll up our sleeves and make a little effort to work to educate them in the manner that they need, addressing and not ignoring the deficits that they have.

Why can’t our schools and teachers be EMPOWERED to run more fluid/flexible schedules/classrooms/programs based on the ACTUAL NEEDS of the children they are charged with helping?

Why can’t we encourage our educators to be more understanding and accepting when they encounter a child that receives outside private and home therapy?  That is something you would think that a system that is so strapped for resources would want to take advantage of and build on!  The majority of children on the Autism Spectrum learn academically better and easier with a one-to-one teaching method or in very low student to teacher ratios but they still need access to multiple typical peers for socialization.  Creating a plan between home and school only helps foster the success of the child and allowing it to be flexible would relieve a lot of stress for the parents, the school districts and most importantly the children.

You can’t create a set curriculum for Autism because all our kids have such different needs.  It does not make sense to have so few options and as for the special people who are willing and want to teach Autism classes; they should be supported and if their students are thriving, growing, learning and coming home happy, then dang it; THOSE CLASSES AND THOSE TEACHERS should serve as models for others in the district instead of being so few and far between.  Some of you may or may not know that thanks to social media and some brave people there is a growing movement to place Cameras in Special Needs Classrooms.  This movement is stemming from real situations that are far more common than people realize or would care to admit.

The use of cameras in special needs classrooms would be a great learning tool to provide feedback to the districts on what is working and what isn’t in our Special needs classrooms.  Great teachers would be acknowledged more and not so great teachers could get help in the areas they’re struggling with.  Cameras would also help give our most vulnerable children a voice if unfortunate situations are occurring in their classroom.  Cameras would also help alleviate parents’ worst fears and help good teachers from being falsely accused of any wrongdoing.  There’s nothing that my child should ever be doing at school other than going potty that should require privacy from cameras and if he is, that means someone isn’t doing their job!

I am scared and sad, disappointed and worried by the SEVERE GAP in available programs for my son.  In our state, the highest functioning children can mainstream with an aid (if parents really push for it) otherwise the option is to go into a Self Contained Autism class or a General Special Ed class for the majority of their day.  

THE WHOLE REASON we want our son to attend school at all is to get help with his ability to navigate SOCIALLY.  Academics can be learned at home if necessary but you can’t create a social setting like school at home.  How does a non verbal child learn to be social you ask?  Well it’s not just about them learning to make eye contact with just adults and say hi when an adult speaks to them, it is also about learning appropriate behavior in different settings; learning when to be quiet, how to play around with other peers, how to take turns, how to transition, how to read other people’s emotions and to be considerate of them even if they don’t quite understand them and how to understand other peoples intentions, how to indicate to someone if they need help. 

I would never want to help my son to the detriment of another child’s education and I most certainly don’t want him disrupting a typical classroom but it’s impossible for him to learn appropriate social behaviors if he doesn’t have real social experiences starting NOW, not when he’s 18! 

Don’t believe the outdated ideas about Autism!  My child craves people, loves attention and interaction.  He is funny, and affectionate, an opportunist and tenacious, he doesn’t fit what the textbook tells you he’s supposed to be.  He’s already surpassed most of what the “experts” in our state told us he would never do and this entire country needs to wake up because he is not alone!  There are so many children just like him that fall smack in the middle of everything, and not just children with Autism lots of different special needs children with amazing personalities, potential and affection in abundance… falling through the cracks.

Where are the classes for them, the classes that foster that light and joy and spirit?  Where is the class for my son? 

Let me guess you’re thinking, “Isn’t this what inclusion is for?”  Let’s be honest; Inclusion is a word that is erroneously thrown around by the school district to mislead unsuspecting, overwhelmed, exhausted parents into thinking their child is genuinely interacting with their typical peers.

INCLUSION is NOT THE SAME as SOCIAL INTERACTION!  More often than not, inclusion is reduced to RECESS (where our kids tend to isolate themselves), LUNCH (kids are seated at their own segregated table) maybe a music class or some library time.  For parents that push to have mandatory classroom time in their child’s IEP it’s just luck of the draw, there are some teachers, bless their hearts that will try to “include” your child but plenty of them aren’t going to slow their class down for the special child and I can’t blame them; they have goals they have to meet for all of those other kids in their class and they often lack enough training on how use positive behavior supports to deal with behavioral issues.

I blame the districts for not providing Continuing Education classes on how to use and implement positive behavior supports for teachers who don’t have any experience with special needs or Autism.  I blame the universities for not providing the proper training in the first place. (I have a dear friend who is almost done getting his degree in special education and he still hasn’t had any classes on how to actually TEACH the children, it’s all been about how to write IEP’s!)

To borrow a phrase from Judge Judy: “Don’t pee on my leg and tell me it’s raining!”  Meaning, don’t sell me on “Inclusion” when it’s not really fostering interaction, it’s insulting to me as a parent and I’m sorry but this mom is not drinking that kool-aid!

I understand that school districts just don’t have the funding or resources for much these days.  Our system is a mess and doesn’t even rank in the top 10 for reading, science and math when up against other countries.  70% of American 8^th graders cannot even read at a proficient level so really what harm could a couple of reversed mainstream options in our schools at least K- 6 possibly do?  We have nothing to lose but everything to gain!

Why can’t we run dual classrooms with both a typical teacher and an Autism teacher in just one or two school in each district?  My son is getting ready to leave THE ONLY integrated class in our ENTIRE school district.  It’s frustrating that they would have a class like that if that model isn’t going to continue past Kindergarten?

The class my son is leaving is half Autism and half typical and it’s been AMAZING and just as BENEFICIAL for the typical kids.  The typical children who were a little nervous around him in the beginning no longer look at him any differently than anyone else; they understand how to get his attention and encourage him to follow them and participate.  They help him and boy do they have his back out on the playground, he LOVES his classmates and now sadly he is being forced to leave this amazing environment because it doesn’t exist anywhere else.

Not only is our son no longer afraid to be around other kids, he’s right in the mix playing alongside of them, he doesn’t always know what to do but he’s trying!!  He’s even started to ask the girls (Autism or not he’s no dummy, he likes the ladies) in his class for help instead of just fussing and waiting for an adult to come find out what’s wrong.  Taking him from this type of environment where he is truly thriving and now shoving him into a self contained class with limited peer access is detrimental and I worry what it’s going to do to him emotionally.

The kids who need the most stability and consistency in their schedules and environment get bounced around like ping pong balls.  Our district keeps changing where the Autism classes are.  How are our kids ever supposed to reach out and make any connections if they’re constantly being uprooted like an inconvenient after thought?

We live in the age of social media, the age of TMI an age where typical kids can go to school on line and never even have to see a teacher, an age where more and more families are OPTING to home school!  If a person can’t navigate our society socially after coming out of our school system then honestly what are we doing? What’s even the point of them going at all?  But then again maybe I am asking too much… been to a mall lately?  It seems as if the typical kids being released into society are severely lacking any social skills themselves so maybe we’re just all doomed.

I believe with all my heart that the greatest thing school districts across this country could do for all ASD children is to EXPOSE and EDUCATE the TYPICAL CHILDREN too about Autism and maybe even other disabilities too right from the very beginning in Kindergarten, 1^st, 2^nd, 3^rd grade and so on.  It’s so easy and it wouldn't really cost anything. 

I always find it funny when people say things like, “Your son is going to have to toughen up and learn how to cope and fit into the real world”. (Those are the people I run away from as fast as I can because that statement alone tells me that those people know nothing about Autism or Sensory Processing Disorders.) 

Think it through… YOU have the capacity to understand that my son is a different capacitated person with physical and neurological challenges and varying comprehension skills but HE’s the one that needs to cope and fit in?  Why stop there; why don’t we just start telling people who are in wheel chairs to suck it up and figure out how to get up the stairs because we can’t be inconvenienced to put in a ramp?  It’s like trying to force a square peg into a round hole repeatedly! 

IT’S SO SIMPLE:  If Schools can’t co-learn in an integrated classroom with two teachers then how bout we create an “adoption” program where typical homerooms take turns adopting/sponsoring the Autism or special needs classes for one month at a time during the year.  During their month they help the class with a couple of projects like a big brothers & sisters program, maybe eat lunch with them a few times, help play a couple of games with them at recess and then we educate them about the Autism and or other special needs peers through short presentations and real honest discussions about Autism specifically geared toward each grade level.  WE TEACH THEM what Autism is with easy visual analogies like thinking of the Autism brain as a bridge that sometimes washes out and can’t connect to the other side. 

WE CREATE a complimentary exercise that gets them thinking about how hard it is to communicate when you can’t talk.  Imagine how scary that must be to need to tell someone that you’re hurt or sick and you are screaming at them in your head but you can’t get the words out of your mouth?  

We explain what an Auditory Processing Delay is, what Self Stimulatory Behavior is.

Have them participate in a simple yet effective exercise to help them understand Sensory Processing Disorder for EXAMPLE:  Listening to a CD of everyday sounds that WE are able to FILTER to the background of our minds, but ASD kids sometimes can’t.  Sounds such as a car alarm, people talking, baby crying, dog barking, wind or rain, lawn mower, water dripping, fan humming, loud muffler, birds chirping at the SAME time at the SAME loud volume level – ALL THE WHILE BEING ASKED in a normal voice to complete a simple task using their opposite hand with their good hand behind their back while the lights are being flicked on and off.  It’s a great example of how it’s not that our kids aren’t listening rather it’s that their brain isn’t FILTERING!  It helps show how frustrating and scary sometimes it can be for our kids and also how hard they have to work to do the simplest of things.

Compassion and tolerance can be LEARNED BEHAVIORS!  I’ve seen it first hand in our son’s integrated Kindergarten class.  Those typical children will carry this experience with them always!  Now think about if it was commonplace in our elementary schools; the number of bullying incidents by the time those kids reach middle school and high school would drop dramatically because there’s nothing to fear as they would have grown up with our kids and would be far less likely to single them out in a negative way and far more likely to stand up for them when situations do arise.

Think about the quality type of people we could actually release into the world as adults.  Maybe those kids who were exposed to and educated about Autism will let their tolerance and compassion carry over to people with other disabilities, people from other ethnicity's, other financial brackets.  That one simple move… to demystify Autism and other disabilities and expose and educate typical children from a young age could have a game changing effect on the world!

If you don’t think children that young are capable of understanding, you are dead wrong!  I've heard 5, and 6 year olds tell other kids to be nice to my son because he has Autism and it’s hard for him to speak and it makes him upset sometimes, um can you say AMAZING!?! They demonstrate a level of comprehension and compassion that most of the adults we've met can’t be bothered to muster. 

I also believe that when bullying instances occur in our schools against children with Special needs that the bully should have to spend his/her detention time with the Special class working with them as well as someone taking a moment to maybe ask them what’s wrong and why they’re lashing out.   Detention and suspension punishments for bullies don’t really work in fact it often increases their behavior but giving them an appropriate outlet to express their anger and then EDUCATING them about the kid they were terrorizing … now that could work, don’t you think? For example recently we learned that our son after sitting through another classes play for an hour apparently had enough and got up and was making loud noises and some older kids started making fun of him… There’s not a doubt in my mind that it was probably funny to watch but MAYBE, JUST MAYBE If those boys knew anything about why it was so hard for my son to sit that long quietly and what an accomplishment it was that he made it as long as he did; maybe they would have made a nicer choice in that moment.   

Yes there will always be little jerks in the world male and female that no matter what you do they are just jerks but so much of that usually comes from a fear of the unknown, a lack of experience or education and sadly a reaction or recreation to their own home experiences.  It’s simply behavior and if I’ve learned anything by being an Autism mom it’s that behavior can be learned/unlearned and modified!

If school districts would stop trying to gloss over everything with special needs parents, spend less time focusing on how much funding they can get for having the children in their district, how much money they can get Medicaid to reimburse them for and get more realistic about what they can and cannot actually do for our children, stop fighting inclusion and make an attempt at educating the typical kids around them; I know we could save money and time and maybe a little slice of humanity and we would absolutely set a whole lot more of our kids up to have a positive and beneficial educational experience. 

This is not our Grandparents or even our parents Autism anymore.  We know too much about Autism now and about what these kids are capable of that they should no longer be hidden in a resource room for most of their day, isolated at a lunch table, left to fend for themselves in a bathroom or on a playground.  Children with Autism are here and increasing in number even with the new diagnosis guidelines.  Maybe it’s time for educators in the US to get over their fears, the dreaded budget and open their minds to all of the new information out there, embrace them and start doing right by them by thinking OUTSIDE the box for them. 

What’s that saying…? “If you teach a man to fish….?”

Kindest regards,

The Amazing Z’s Momma

Bstang745@yahoo.com

https://www.facebook.com/MaumtismLetsShareItSayItShoutItOutLoud

www.maumtism.blogspot.com

Movements I support:  

Keeping all Students Safe Act

Camera's in Special Needs Classrooms

Stop Restraint and Seclusion

Zander

A poem for my son...

As my son lies down to sleep

I sing to him and rub his feet

I watch him as he drifts away

and pray he'll find his voice one day

My life before him... incomplete

My life since him... bittersweet

I've cried a lot of hopeless tears

I've learned to cope and live with fears

I try my best to light his way

through the darkest of his Autism days.

If people would stop to look they'd see

the ray of light he's meant to be

His love is one I've never known

a love I hope one day he's shown

He's my angel 

He's my heart

My little Zander... a work of art

Is there a doctor in the house????

When I was searching for a pediatrician for Zander after his Autism Diagnosis I was turned down, turned away, not once, not twice but NINE TIMES before I found someone who would see him.  I was looking for someone to help partner us in taking care of Z's PHYSICAL health... NOT his Autism but somehow the medical community couldn't and still can't seem to wrap their heads around that.  

Trust me, us Autism parents... we've got the whole neurological/psychological/cognitive/comprehension/developmental delay/auditory processing delay/sensory processing disorder thing COVERED... WE LIVE WITH IT, THROUGH IT, BY IT, FOR IT, AND F*#!'ING UNDER IT 24/7/365.

What we want and NEED is someone to go to, somewhere to go to when our child whom... and I know this is hard for some of the medical community to grasp... is an actual flesh and bone, air breathing, heart beating HUMAN BEING... sprains his ankle... has a rash... has a high fever... strep... an ear infection... can't poop... breaks his arm...

I have a lot of friends in various areas of the medical world and they all love and support us and Zander so I don't understand where this other mentality comes from that we keep seeing in article after article from around our country.  This lack of compassion... is it taught in medical school?  Are people just going into the medical industry for the wrong reasons?  I don't understand...  

When Z received his "official" diagnosis from the top leading doctor in Autism in the state of NV.... she offered us ZERO hope... within 6 months of doing the therapy that SHE, THE MEDICAL "EXPERT" told us not to bother with... Z started coming back to us, started doing things she said he'd never be capable of, surpassed her low expectations and blew ours out of the water and we've never looked back.

We aren't unrealistic... we know Z will always need help and prob live at home until they pry him from my hands because I'm too old to physically care for him appropriately anymore but the medical community needs to get over itself, stop teaching with archaic and outdated and untrue information about Autism and start LISTENING to PARENTS as we have more EXPERIENCE... HANDS ON EVERYDAY EXPERIENCE with Autism in our little fingers than you will ever have in your entire career.

This blog post is dedicated to 14 year old Alex Spourdalakis; I've been watching his story over the last month.

HE IS A REAL CHILD IN THIS COUNTRY

HIS STORY IS HAPPENING

GOOGLE HIM!

Ha Ha!

Just sharing a laugh today...  Z continues to show us he has a sense of humor.

This morning I set my water on the kitchen table and forgot about it as I went through our morning routine still half asleep.  I went back to grab a sip a little later and nothing came out.  I pulled back thinking, "What the heck?"  and then as my son started giggling and jumping up and down I saw it.  He had gotten into some packing tape that was in the closet and had taped the top of the water bottle so I couldn't drink!

"What did you do Z?" trying not to laugh to which he started laughing harder and dropped to the floor.  "Oh so funny, lil man, so funny"

I don't know if it was that he'd gotten into the tape and he knows he's not supposed to or that he actually tried to trick me which would be his first ever practical joke!?!  Either way it's another one of those moments with Z I'll cherish forever! 

Love my son
Love his smile
Love his laugh

Just me and my apparent pea brain...

Can I just say that I am grateful Z landed in the pre-k/K class he did.  I think if our first "school" experience had been with anyone else Z would be home schooled already!  His teacher is laid back and genuine, he doesn't sugar coat things, he's straight forward and most importantly... he doesn't talk to us as if we just walked down out of the mountains from some unknown commune and couldn't possibly grasp what Autism is or what our son is or is not capable of doing. 

Honestly I do not know how I'm going to survive 18+ years of IEP's where kids 10 years younger than me say things like, "You know kids with Autism are all different." and "You really have to celebrate the small successes and you can't take even the smallest victories for granted".. (Can you all see me sitting there with my fingers starting to tap the table to distract myself from saying something completely innapropriate while my husband stares a hole in the floor trying to do the same thing.) I know, I know, I know... they mean well and they are just doing their job and I am sure that there probably are parents out there that just don't understand the situation but man, they just don't realize how patronizing it feels to a parent who is involved. I may not know more about child psychology or behavior but I KNOW MY CHILD better than anyone ever will. 

Honestly, (and I swear this is not meant bitchy) we don't care about all the mumbo jumbo or the observations about our child from someone who has seen him 1 day in his entire life... just cut to the chase and tell us what services you think he does or does not qualify for.  Tell us what you would like to add or change in his services, let us say what we need to say and then let us be on our way because WE'RE TIRED and running on fumes and if you make us sit for too long we may just take a nap right there in front of you.

So just for any of my friends that work with Special Needs children and their parents in any capacity try to remember that WE ACTUALLY LIVE with Special Needs 24/7, we eat, breath, sleep it.   It's the first thing on our mind in the morning and the last thing before we fall asleep at night... if we get to fall asleep!  Take a second to find out how involved the parents actually are first before you get into the logistics of your reports.  Some parents may need the hand holding and the "pep talk", but to others it just might be down right annoying, even offensive.

Zander's Song

For the past 4 years we've heard so many times how much people wish they could help us help Z out; unfortunately there really hasn't been a whole lot anyone could do untill now...

Zander is about to lose a huge chunk of his therapy funding because he is turning 6.  This decision is based soley on an age scale as opposed to a progress scale.  Z has made and continues to make amazing progress and the idea that he is probably going to lose several therapy hours a month is heartbreaking to us.

For anyone who has ever wanted to help here is your chance:

Eric has written a song with his friend Erika inspired by Zander & Autism.  It's the song a lot of you have heard on our facebook pages before for free, only now it's up on both i-tunes and amazon for .99cents. 

https://itunes.apple.com/us/album/reach-for-you-feat.-erika/id592496588

http://www.amazon.com/Reach-You-feat-Erika-Davidson/dp/B00B0EOYC0/ref=sr_1_1?ie=UTF8&qid=1358235922&sr=8-1&keywords=eric+stangeland

About .70cents from each download comes our way and would go back into Z's therapy fund to help us offset this dramatic drop in therapy coverage.  Download the song one time and ask others to do the same.  You may not think that your $1 can make a difference but if 500 people download the song, that almost covers an entire month for the one tutor that we may otherwise be losing. 

This is not easy for us to ask but it's a beautiful song, they worked hard on it and it's ONE DOLLAR, one time.  I've met multiple special needs families over the last few years who put a DONATE button on everything they can.... we just have never felt right about doing that.  Eric and I really wanted to make sure people receive something for their money, so we say DOWNLOAD don't donate!  You'll receive my husband and Erika's hearts through the gift of music and know you've had a hand in Zander's future and of course there's always my love and gratitude!

Here is the youtube video we made for the song, please enjoy it, and if you see it up on either of our facebook pages don't just click like... click share and ask your friends to do the same.  I see people sharing videos and pictures of all sorts of random sensless things could it really hurt to share something heartfelt that means the world to someone?