“Frankly, What is Triumph?”

Teaching thinking dispositions to Autistic children with artful thinking routines

By Amy Simmans “Frank Autism”

I have been exploring Teaching Critical Artful Thinking by Inquiry Through Art thinking routines to create growth in thinking dispositions and applying it with Competency Based Instruction for growth mindsets in self-efficacy in children with Autism.

I am taking this course through Harvard Graduate School of Education in teaching critical/artful thinking in the classroom to create thinking dispositions. This article explains the concepts and research and introduces the lead investigator in Project Zero -Shari Tishman

Throughout the course children prove to have the capacity to be deep thinkers using skills they naturally possess. This course teaches you how to apply the skills used in art inquiry in every subject and aspect in life. Children who are taught to think of thinking as a rote skill do not habitually slow down and use all their senses for observation and experience and then investigate and reason. Thinking dispositions can be taught.

Reading this article one of the children’s responses pontificate the precise reason I knew I had to take this course and reach my children this way- through art.

The eighth grader asked, “What does triumph mean?”

While I try to see what one of the children see – the armored man who looks like Jesus and ponder how the child saw that and the knowledge which informed or influenced that observation; I remained camped with the child inquiring about the ambiguity of triumph and the fact that is precisely why my children require this teaching method. The abstraction has proven to be exactly the hurdle for them and each day I have used these methods I can see them struggle but in a more comfortable way where there are no wrong answers , so that pressure of reporting correct answers is removed and instead I see them break through the rigid and concrete. It is teaching them what it means for something to be subjective and abstract, that elaboration is not correcting but instead teaches growth mindset and that critique dies not mean to criticize. I am teaching them how the world is abstract and we each experience it differently and that our perspectives CAN and do change as we engage. And, so much more. That all happened by taking my focus off prescribed education and which curriculum I would use for scope and sequence and focused on my educational and life goals for my children.

In a single session of incorporating a single piece of art and thinking routines used in art inquiry I have been able to touch on LISTS of common core standards and can touch on every subject through art. These ways of thinking are essential to teach to children living with Autism. This is important for every human, yes, but I watched my son who is extremely uncomfortable with the abstract to include extreme discomfort with art to point of even refusing to color or participate in any art or craft , to being comfortably and confidently engaged in the abstract when we worked through it. I am about to write their reflections, have them write reflections, and scaffold assignments to record and report their Competency Based Education. This allows them to practice conversational skills and elaborate, builds expressive and receptive communication skills and allows them to demonstrate knowledge in their best communication abilities even if it is to attempt to replicate or produce inspired art by artistic artifacts. It also allows them to connect in some way with others and learn human behavior even if they do not internalize the understandings of it.

My four children all participated in looking at, observing, discussing and elaborating on a painting and learned many lessons that day all by putting up a picture of a painting – Wassily Kandinsky Sea Battle. I can actually report all the notes of the lesson plan and how every detail played out and the common core standards which are covered in a single session.

Now that is enrichment.

If children living with Autism are receiving sensory input and processing it differently then it stands to reason they become frustrated when their experiences are not understood by others and they arrive at different conclusions and interpretations than others. Navigating the abstract can be defeating for the concrete mind. I believe if children are taught thinking routines and learn to become comfortable in navigating abstract ideas that learning can be built on these positive experiences where there is no right or wrong answer. The OCD and perfectionism traits in Autism can be a tremendous barrier in learning when they cannot function or overcome abstractions and ambiguity by shutting them down and avoiding the experience altogether. Inquiry Through Art routines use skills they naturally possess even if their brain performs them differently-and does not require correctness in either their sensory input, observations, information processes, or experience of the world but instead can come a spring board for exploring those differences. These positive experiences devoid of correct answers relieves pressure and can instill growth mindsets and increase self-efficacy.

Children have a greater capacity to learn than adults. Even the child who thinks he cannot learn.

“What is triumph?”

I have to teach them to function within the abstract before I can teach them something that exists in the abstract. I think it has something to do with the armored man who looks like Jesus.

Frankly, I Cried Too!

By Amy Lynette Simmans “Frank Autism”

The article shared below is another beautiful perspective of mothers now homeschooling.

Yes, I too cried too…in the beginning. Because I thought I was failing at it and failing them. I was overwhelmed with millions of resources. I was overwhelmed with other homeschool mom’s opinions, I was overwhelmed because my kids are Autistic so many of the easier homescooler sites where everything is worked out for you with reports and all – were all rejected by my children (learned that is why schools are forcing those virtual sites for the diagnostics and reporting). I was overwhelmed with the research and courses of information on approaches to learning and methods and Curriculum.

I was financially crippled by the purchases in trial and error and for that resent that it was so costly for us while everyone else is getting it free. I was overwhelmed because I had NO ONE who understood what special education entails and what resource is for accomodations and modifications for FOUR kids at once. If the schools cannot afford it- how can I?

I was overwhelmed with the pain and trauma of a school system which allowed my children to suffer. I was overwhelmed with having to put together full learning plans for all kids at once. And I was overwhelmed with the fact not one person in our lives knew or understood what we were going through. I was overwhelmed because the school had misrepresented all of my school kids Education be it over or under represented – which meant everything I tried to continue was either too easy or too difficult , so, I had to find their real place and close the gaps myself. The school had minimal unambitious goals for one child and refused to do more while another child they had severely over represented and yet one more is twice exceptional so now I had to learn to provide a gifted Education. The Education my twice exceptionally gifted child deserves – we will never to do him justice unless some very generous people find him and scholarship or apprentice him. He is twelve, a mathematical genius with 99% IQ and is into math beyond college level, quantum physics and coding. He already understands code in a way I never thought possible. The numbers in code have value and meaning to him and tell a story. He is twelve. How do I look at the schools joke of a packet when he is breezing through every assignment I give him?

I have every aspect of Autism and co-morbids in this home. No one can afford this. Also, we were moving in the middle of it. This was Jan 2019.

Not now like everyone else – last year.

I cried. So did they.

And as my Autism goes I melted down with all of this at once. We are still very hurt from it. We are hurt there was no justice. I prayed hard not understanding why God allowed this to happen to every one of my children and why He gave us no justice. I cried. I cried in a complete meltdown in the bathroom and immediately called my psychologist and set up an appointment. I had not had a meltdown in very many years. All of this in a few short months.

But, guess what?

In just a few short months we navigated it. Every Homeschool parent will tell you , “Take 6 months to DESCHOOL yourself”. Do not bring home what public school gives you. Teach them what you want and when you want. If your kid is crying, do not push that program, site, Curriculum, whatever. To learn, a child MUST be engaged. To engage them you must find what Sparks a twinkle in their eye. Every child can learn to divide but some learn with Legos, some by cooking and dividing ingredients , some with websites, some standing in the store and working out how many M & M’s each person gets if you buy this many bags, and then probability of color if you remove a color. The list goes on. Scope and sequence are even your choice. You do NOT have to teach about the Holocaust if you think it will shred their tender heart and maybe wait til next year.

Fact: your child can learn EVERYTHING a child learns between kindergarten and 5th grade in 3 months at the age of twelve. But they cannot do it at all under stress.

Fact: some people pass kindergarten through 12th grade and drop out and take a G.E.D test.

Fact: Your child does not have to be a mathematical Ace in the hole if all they want to do is be an artist and your mathematical genius does not have to paint with you if he only wants to be an engineer- as long as he knows where to learn it in case he ever decides to!

What is your job as a parent? To help your child discover their strengths, expose them to the world and all its charms, develop their passions and encourage them through it all.

Sitting there forcing the public school Curriculum because it is how the school needs to run diagnostics, benchmark and measure your child for performance ratings while your child cries or you cry is not your job.

You will cry. In case I have never told anyone that before I DID CRY. The weight I carried was much more, I could not just try it and stick mine back in public school if I failed – I was their last chance – the school already failed them all. But just know that all homeschool mom’s need support. We all communicate and support each other in finding the resources the parent wants for their child. No judgement. We meet each other where we are at and help life each other up. You have a gift right now, the whole world can identify with you right now. Everyone is going through it.

When life is throwing something at us we cannot schedule I shave down the heavy conceptual learning-and do unit studies or move to something more Calming, Creative, Cathartic and Connective to immediate circumstances which can even become a Coping mechanism. Teachers could refer to this as moving from the 5 E’s to the 5 C’s…my 5 C’s. Life learning is a big part of this. But I will actually wrought curriculum to speak to our life moments. Life is chaos and unstable right now. This is a brilliant time for keyboarding/typing because it is kind of mindless muscle memory and does not require too much mental processing (even my 7 year old asked and is doing it and I did not plan for that). Also a brilliant time to enjoy music and talk about Mozart or let them pick music and find out what they love while baking. Let them pick recipes. I created an Allrecipes account for my son so he can send me what he wants me to get. We are reading literature together on Amazon Kindles and making connotations in notes for vocabulary words under electric blankets with snacks. I am trying to create an environment which will foster a love for literature with a story which meets them where they are at in themes of maturity and an epic economy windfall. It could very well be another Great Depression and I want them to comprehend that. Where the Red Fern Grows by Wilson Rawls is an excellent story to share right now for reading aloud together. I have the study.com assignments to accompany the story. I will not make it too heavy; just expose and introduce, no pressure. Baking, math, English, grammar, vocabulary, coming of age and rites of passage, economics, escape through nature, together and learning to type for the next season when I begin incorporating research papers, composition and the reward of ability to code better for one. Also, because of Quarantine we can do walks, proper weight-lifting, running, biking and calisthenics. Typing also teaches spelling. We are painting, gardening, typing, baking exercise and reading. We have so much more to do but I will not push it right now.

Life moves in seasons and phases. No one expects your child to be ready to graduate. You do not have to prove your ability or your child’s ability to anyone. Do not care about that. This is about your child making a way through life and find his or her place in the world and you actually have time for that – a month ago millions of kids finished high school with no idea of those things because the school does not help them do that.

I cried too. In less than a year we have already moved ABOVE AND BEYOND public school. This took more than a month. You cannot fail your child – and even if you could fail them you cannot fail them in a month.

But, do not miss that your school has been pushing much much more on your children on a daily basis and has completely failed the nation’s last 15 years of graduates with common core, removing the arts, and 64% of the nation’s 8th graders cannot read beyond a 3rd grade level. So, they already failed them, not you. If you are going to cry over anything – cry for that. Cry for what your child has been forced to do on a daily basis. Cry for that. You can do this. By the fall I already started having a feel for what I wanted to do. In six months time, you can LOVE life and your child love calling you their teacher. You will feel a whole new sense of what parenting can be and you will be awakened to how you were deprived of this.

Chin up – you got this. It may sound cliche but sincerely, if we can, you can.

Inspired by Article below:

https://pagesix.com/2020/04/14/drew-barrymore-has-cried-every-day-trying-to-homeschool-her-children/

Frankly, You Are the Expert: Homeschool for Autism Parents

By Amy Lynette Simmans “Frank Autism”

I was truly delighted to hear the twist in the article shared below in regards to Jennifer Lopez and homeschool.

So many parents LOVE homeschooling their children. So many families are absolutely successful and so many families have found that public school is shoving and forcing children through the system like cattle and not giving them any room to explore and discover themselves , their own passions , gifts and talents. So many children are NOT ADJUSTED in public school, depressed and suicidal as early as 4th grade here in Clarksville. That is extremely alarming and points to a broken system – not broken children.

And so many families have learned that despite what the public school has lead you to believe – no, school is not the most important thing in your child’s life. A child who is maladjusted, depressed, forced through a system which does not work for them or has different family lives CANNOT LEARN under such dire circumstances.

So many parents are subjected to OTHERS thinking public school is best, traditional school is the only way. I am sorry but clearly you are not listening to your child . Our children never want to set foot in a public school again. Our children are much more ahead.

You CANNOT LEARN TO HOMESCHOOL the way the public school is pushing it. Once again they think these one size fits all schedules and Curriculum and learning approaches will work. So they try to force every kid to conform to THEIR SHORT CUTS.

Just in my house alone every kid is using different methods, programs, websites, methods of learning, for every single thing they need to learn. Not two of them doing the same thing. It’s called teaching. You have to reach the child to teach the child. You have to understand what turns their light bulb on.

All this narrative you are hearing about it being impossible is HOGWASH. It most definitely is not. What they need to do is send out what the child is expected to learn and YOU find a way which your child can learn it. They are force feeding short cuts. They did the same crap to my kids in public school. You know why they FORCE IXL and then tell you at IEP meetings something is wrong with your child’s brain- because IXL was designed for THEM to run diagnostics and make their job easier. They flip it on and say here, do this. It is a shortcut.

I soooo wanted my kids to use things like Mobymax, IXL AND T4L because it runs all the reports FOR YOU.

That is not teaching. I literally pay for all this stuff just to follow each standard to know what the public school is doing and guess what- nope. We are doing it better.

Nothing is wrong with your child because the child is not getting through IXL …IXL is terrible! It is loaded with abstract images and questions which are not very clear. Every freaking time my kid was stuck so was I. Seriously, HOMESCHOOL your child before you listen to the school say something is wrong with your kid or your kid needs meds etc. Your kid will be fine when you pull them.

Learn to sacrifice an income and make tons of cutbacks and prioritize your child. They cannot learn in those conditions. They are not the experts anymore- they are taking shortcuts and when your kid is struggling with that method they are using which is clearly designed to weed out any kid/person who does not think that way- they would rather fail the child then even begin to try another method of learning. Trust me…I know. We have three boys who are leaps and bounds ahead if public school. Everything they do now is taking shortcuts.

I am growing increasingly upset with this narrative in the media that this is IMPOSSIBLE. No it is not. It takes longer than a few weeks to deschool and navigate the world of learning and your child’s preferences and what engages them. I find new things everyday. What they are doing is the first mistake EVERY HOMESCHOOL PARENT MAKES AND WILL TESTIFY- THE FIRST THING THEY DO IS BRING PUBLIC SCHOOL HOME. DO NOT DO THAT.

Every homescooler only finds success when they DESCHOOL and turn off what the public school does and finds their own way. Let that pressure go. Enjoy being with your children. It is okay to know and tell the world exactly what Jennifer Lopez said, the most important thing is that they are with you and do not feel abandoned. Being surrounded by people who love you, socialized with people in your community of all ages and backgrounds instead of homogenized by neighborhoods with exactly same income brackets and psychographics and demographics and even down to exact age. That is not diversity -it it is homogeneity. Your child is not awesome because they got Perfect Attendance though we are forced to like and say YAY, WAY TO GO for every kid who got it. I have news for you- as a Public Relations major let me inform you that when ANY AWARD in any world of school or business is created it does not mean you should embrace it. No one is impressed with perfect attendance. Awards are deliberately CREATED for the PURPOSE of stroking ego to get a desired behavior from you. Here, in CMCSS if you do not produce your child they will send investigators from child protective services. In Clarksville dcs works closely with the public school to ENFORCE compulsory attendance laws. So they exercise very real fears and threaten and weaponize it. But the first ploy is that compulsory attendance- I mean “perfect” attendance ego stroke award. And some of the more disillusioned parents eat that up because hey…my kid got an award. But that award was created ONLY to make you feel like this is something which should be applauded. Because why, the school loses money every day your child is not there. Yep. But hey, way to go Timmy, you either get an award because not one person came near you to give you the flu or your parents are the jerks who sent you no matter how sick you were. No achievement there . That is luck-

Look, you can do this. It is not impossible. The school system knows that and have been losing children every single day. HOMESCHOOL numbers have shot up and mother and fathers around the world are giving their children better lives. The government knows this. The public has been catching on and homeschooling has reach record numbers in a very long time.

And the narrative driven by media that you cannot do this is to terrify you so you will send them back. Exactly what they need and want . They want your kids back so they can tell them what to think and when to pee. They do not want a society full of people who can think for themselves. That schedule you got, HOMESCHOOL packet they sent, notice they even write what time your child should wake, dress, eat, when they can move around and what they should read and which math app they have to learn to divide on. It is a riot. In no world should your child have every second of their day micromanaged. This is what the public school does to your child every single day. And now that you are supposed to follow suit you are having breakdowns while all the while you have dismissed your child’s. You have no idea how much school has changed since you went. Your kids are have been living a nightmare being shoved through the chute like cattle but now that you are supposed to March to that same drum you finally see what all the fuss is about; kids maladjusted, depressed, vomiting, breaking down, spirits broken, Behaviors of acting out, aggression, told to medicate them, suicidal elementary and up kids and school shootings.

The next time you ask what is wrong with the world – go look at a prison. Prisoners think YOUR CHILDS LIFE IS HELL. Inmates have been interviewed and they have said school is ran more restrictive than prisons. Prisoners get more time in the yard, more access to free reading and books, and lighting, and are allowed to talk, can pee freely. The list goes on. Your school is ran a tighter ship than prison.

Hello, let me introduce you to your child. I am a HOMESCHOOL mom who began with the pressures the public school gave me. It takes about six months to DESCHOOL and research Curriculum and learn your child’s specific learning style. You will then over the next year try different methods and approaches. You will see light bulbs . You will bond with your children more than you ever thought possible. They will be socialized with people YOU want them to. They will discover themselves. And I. A years mark you will find out you got them way ahead of their PEERS at public school. And like the rest of us you will say- what the hell were they doing with my kid all those hours anyway.

It is worth every material thing we ever cut back. ACTUAL INSTRUCTION TIME equals about two hours a day of learning- anything! Not what they say- what you say. You can teach everything through your child’s interests. You can travel instead of looking at pictures online. The best thing you will ever do is withdraw your kids.

Some states are so scared you will love it so much and pull them they are trying to BAN IT. So they are intentionally creating a narrative in media of highly intelligent moms who do not want to do it. Within hours of a space archeologist telling school she was not doing this she was hunted down, given a prestigious award and pumped it through the presses. In PR we call this framing, agenda setting, and creating a narrative. Oh, well if this brilliant woman cannot do this then neither can I. No! What she said was they are crazy and that load is crazy and it is all crazy. Only she did not know this is what her kid has been living with. She is right, her child’s emotional stability comes first.

So does yours. Pull ’em if this sounds like your child

A word:

Below is the link to the article about Jennifer Lopez on homeschool. I just love what she said. You can say it too!

https://www.insider.com/jennifer-lopez-struggles-with-her-kids-math-homework-while-homeschooling-2020-4

See-Salt

See-Salt Amy Lynette Simmans

Existentialism at its finest;

What is intriguing is that it usually organizes priorities appropriately and joins hands

despite our idiosyncrasies.

We are salt crystals

-sea-salt-

which link in precise symmetrical pairs

Then
Squares.

But, this is an entirely different beast.

Preservation

means

Reservations;

waves

from the windows.

Water

must evaporate quicker than the

salt dissolves

to leave us here –

we hear-

waves from the windows;

The salt flats.

Why do people not

see – salt

flats

are evidence of

the global deluge?

Crystalline

clear

evidentiary

mirrors

the truth-

Rattle-back.

We have become

HYDROPHOBIC.

We need the living water.

We are the salt of the Earth.

While we give flavor

and preserve

each other –

we are also the salt

in each others

wounds

But, no one really wants to talk

about that.

Just waves.

Waves from the windows,

washed up by the sea.

He promised

it would not be by flood

or tears again

That, I believe;

For, we have become

HYDROPHOBIC.

We are the Salt

Rubbed in each other’s wounds

Evidentiary

mirrors

He left us too soon.

~ Amy Lynette Simmans

Some stare at the mirror not because they are narcissistic but because they cannot remember who or what they look like. We are made in His image.

Frankly, Do Not Jingle the Bells

By Amy Lynette Simmans “Frank Autism”

You know when you almost get in a crash you immediately turn off the car radio; sensory overload. We live with that feeling all day, everyday

Anyone dealing with Autism and/or SENSORY PROCESSING DISORDER does ask me which headphones my kids use. These (link below to product “Muted” headphones) are the absolute best from baby, toddler, Adyn, Hunter and I, too, have put them on and approved. This one set works for every age and size. When you change color options you will see dinosaur oragami, hearts, robots, space and many more.

But the thing is many parents will start with a different brand and even the headphones offered at school HURT so the kids will not use them. Be careful when the school says at meeting, “child rejects them so child does not need them”; the second my kids were allowed to use “Muted” in particular they used them- and they still do.

PrynnRose is sensitive to certain pitches, instruments and keys – so observe for those sensitivities. I have had parents ask if that is possible because they thought their child was too-yes,it is. Also, she HATES when my phone plays a video at all (autoplay is a nightmare).

Jude is sensitive to and hates spontaneous noises so nature sounds are a hard no but Mozart with precise anticipatory timing and others of the likes- he likes.

These are just particular auditory sensitivities to observe for.

TVs can only be set on a volume which can be heard ONLY in that room. If I can walk through hall and still hear it- it is too loud. If I can hear it in any other room it is too loud-even the neighboring kitchen.

If my kids start pinging and acting funky usually it can all be stopped immediately by pausing or offing TV.

If we are all in kitchen dining room we can only have one voice at a time. And quiet. Some talk too loud (also SPD issue) so headphones are almost always necessary for one or another these times.

PrynnRose is having a heck of a time in public restrooms. They are loud, echo is bad (acoustics), running water hurts her ears (mine too), the toilets are way too loud and painful (also spontaneous some). The paper towel dispensers are awful for many reasons; either they squeak or they blow loud (also scratchy painful paper or the blowers leave hands still wet and some of us hate wet hands but we are just speaking of auditory here).

Also, the car. The car is a nightmare for auditory issues and headphones help here, as well. Turn radio off or down (to where you can just barely hear it!) . If radio is on then do not talk over it. It is too many sounds. Add to that traffic sounds- so keep windows UP – especially because of the spontaneous noises. When the windows are up voices will bounce and echo. The fact you are in the car means you are either going to or from somewhere which takes a toll on all the senses simultaneously, though I am just discussing auditory alone here. Which means you should probably learn to drive with radio off. If you are returning home I would suggest submitting to turning off the radio (it means your sanity too later-win/win) and not even whispering (silence is golden); this is based on Jude frankly saying, “no” to radio and talking on way home from anywhere once he became verbal enough to advocate such once I figured out and fine tuned his auditory and Autistic sensitivities. But keep in mind you do not want to burn the candle at both ends, so to speak, so just go ahead and get used to quiet rides. By this I do not mean for you to try to fill the silence with questions and talking in the car. It really is not appreciated, especially after school, we had to ride home silently and start diffusing from the second child was in car. We had to get a silent routine down starting with headphones in car or just being silent (he chose to also wear headphones). I will be frank though, this was learned only after years of breaking my daughter to tears when I kept asking about her day and she really really just wanted silence. Save the “catch up” talk for one on one quiet talk for even 5 to 20 minutes. Let them decide how much talking they want to do or NOT do. Too many questions to answer is exhausting so just lay off after the important ones. Auditory sensitivities are like an avalanche.

All of these and more exhaust our brains due to trying to sort the sounds and hear through the noise. It may not be noisy to you but for us it is like being at a concert all day long!

Running water DROWNS out voices. Do not even bother talking to me if water is running. Fans drive me insane (the sound, white noise AND air blowing on me). I was recently at a coffee shop and wanted to cry the whole time because of the fan. Now, imagine your sensitive child entering the room to dishes being scraped, water running, music or TV on, digging through pots and pans and then add talking or a crying baby! Please, put these headphones on your child while you bring all these noises to a minimum and help them escape until you are finished.

Do not require your child to be present while filling tub. Loud again.

Finally, I want to explain how crucial this is to be very diligent about headphones. This is largely a reason SPD kids require so much speech therapy.

WE CANNOT HEAR SOFT CONSONANTS! Especially when learning to communicate, enunciate, read, spell, and follow instructions. When giving instructions or commands be sure to lean away from contractions and be clear in expressing “DO” or “DO NOT”. When you are working on speech therapy and phonics use words they do say correctly to reinforce the sound of the word/sound you are trying to teach.

The headphones bring everything down a few notches but also just allow for complete silence. Sometimes mine will use it even when it seems quiet to others. Again, that may be seemingly quiet to another but not for the person who hates spontaneous sounds which is what you hear when all the intentional noise comes down: the coughs, sighs, yawns, paper shuffling, someone tapping, someone’s leg bouncing, zippers, erasing etc (that was just a moment in a classroom – imagine all day for the person who hates spontaneous sounds).

Many parents know headphones are needed in stores but even Jude realized in some stores he only needed them at entrance and exit because of cash registers, talking, chatter, carts slamming and pulling but mostly CHATTER. I, too, HATE chatter. After 15 minutes of the news on the TV even I am toast! So are my kids and God forbid the commercials. The news is OBNOXIOUSLY SENSORY OVERLOAD.

This list is not exhaustive. It is a GOOD start for those who do not understand auditory sensitivities. Our meltdowns can be largely regulated with this list. But keep in mind this is JUST ONE sense, there are six senses-not five as you thought. Proprioceptive is actually one of the reasons we may be talking too loud believe it or not.

And then there is more to consider for their minute to minute tolerance and thresholds which is exposure time. Just using headphones is NOT ENOUGH. You have to consider emotional and experiential tolls of the day, time of day, and breaks! Breaks are so important. But we have learned every additional minute can compound the meltdown. Extreme meltdowns are actually preventable once you learn to regulate the senses and emotional aspects of Autism. Even as adults we require a spouse who believes us when we say the radio is too loud and does not argue that we did not complain yesterday. This is the STRUGGLE. Our threshold and tolerance varies in direct correlation to all the other factors. We have found one hour at church burns us for the entirety of the day and 20 minutes may burn us for the next two hours. You will have to figure out the thresholds. I have a twenty year old still learning to self-regulate.

I just went to buy wrapping paper at Hobby Lobby for Christmas and I am extremely sensitive now, on verge of tears, migraine and wiped from the hustle and bustle. I was gone an hour in that mess. So now lights are off due to sensory overload. It is not just about noise-you have to turn off ALL SENSORY INPUT and regain one sense at a time.

The Muted designer headphones have been a God-send in our home.

Muted Designer Hearing Protection… https://www.amazon.com/dp/B01N2TAPJK?ref=ppx_pop_mob_ap_share

FrankAutism-Emotional Therapy in Autism Parenting Magazine

By Amy Lynette Simmans

Below is my piece in Autism Parenting Magazine. Thanks to Emotional Therapy we have managed to all sit at the table and complete a holiday project without any meltdowns.

It has taken me much of the year to adjust to major life changes which all happened simultaneously. I spend so much time talking with parents about children with Autism that I rarely discuss my own experiences. That is about to change. I am working on my next piece in which I intend to discuss personal aspects of Autism. It has been quite a journey and I will spare you the suspense…I have not grown out of it.

My article which was published in June's issue of Autism Parenting Magazine is now available for you to read right here!
Emotional Therapy: How to Bridge the Gap For People With Special Needs https://t.co/8GkNPUZgIv via @AutismParentMag

— FrankAutism (@AutismFrank) October 15, 2019

Frank Homeschooling

By Amy Lynette Simmans

Homeschool vs Public School Rules

1. You ARE here to socialize.
2. You may speak freely and learn to have a conversation.
3. You WILL get a chance to speak.
4. I will not run out of time to have any conversation with you.
5. You may ponder wonderfully with what you just read all week or month until you understand what you need to to move forward.
6. You may introduce topics, pick books, and decide what you want to learn about today.
7. You may create your own goals and figure out strategies and tactics to accomplish this.
8. You may disagree.
9. You may go to the restroom and have privacy and take as long as you need.
10. You may sit anywhere you like-yes, even the floor.
11. Yes, your favorite YouTube videos count as learning – even watching people in other cultures playing didgeridoos, or building pools out of mudbricks they made themselves with kilns they made themselves and then irrigated water themselves and the space technology and animal videos where coyote Pete let’s scary animals bite him.
12. Yes, watching TV can count as learning too- especially Survivor which allows you to hear how people socialize, set agendas, manipulate others and see how people respond to this and what may or may not get you voted off the island and see how waving some money in their face changes everything . But mostly natgeo stuff which I actually do jot down in your learning log. I cannot tell you how many times a teacher rolled in a cart (every Friday an entire school year) to watch labyrinth.
13. You may choose your physical exercise – yes swimming in pool counts, so does going to park, riding scooters and bikes and walking your dog, oh and you are welcome to the Smith machine, dumbells/barbells/free weights.
13. Everyone you meet is NOT your friend when I take you out. They are part of the community you live in and you do NOT have to call bullies who are mean to you “your friend”. Your friends are people who are good to you, care about your feelings and treat you kindly. The people you see often and recognize are associates – people you know but have not formed a friendship/relationship with but you are to be kind to them too.
13. You may explore and reject interests/noninterests.
14. You will be 100% successful in life because you will find yourself sooner and be allowed to pursue your passions and as long as you are doing what you love or working towards that goal you cannot fail.
15. Your life belongs to you. Your feelings are real. You will not be taught to dismiss them but to cope and foster them. You will be taught boundaries beginning with owning your feelings and knowing where you stop and others start.
16. You MAY leave your seat. Please, yes, by all means get out of your seat, move around and live and engage the world. If I wanted you to sit in a chair 7 hours straight I would send you back to public school.

17. Feel free to share; but frankly, you do not have to. I do not share my house, car, or things with every person who wants a turn.

18. I am your mother and teacher. Some days the best thing you will learn and know is that I love you. I am not measuring you. Some days I will just want to be with you and hear you laugh. I want to teach you life is short and to never take living and being around those you love for granted. I have feelings too and it is important you learn this and get to know me too. Learning to rest is just as important as learning to rise.

19. We have not hired a janitor, you will learn to maintain your areas.

20. Frankly, class is always in session. Always be actively learning. The second you believe you know enough, is the moment you stop learning and become a fool.

Frank Playdates

By Amy Lynette Simmans “Frank Autism”

Spring is here, which means we are springing into socially awkward situations- even on social media. For children’s sake I cannot help but address this topic as it is one of the big three of the diagnosis. Every day on Autistic support group pages parents are employing advice on advocating for their child, communicating with their child, negotiating their behaviors and, this case in point, pleading for playdates and friendships to socialize their child. All of this is to be expected as the big three areas of concern of Autism diagnosis are communication, behaviors and social issues, so there is no surprise here. However, to my surprise, it seems parents really do not understand the social struggles which really do accompany Autism. And as always, I am going to be frank – about playdates.

You have probably learned by now that, with regards to Autism, socialization varies from child to child ranging from extremely social to socially crippling awkwardness and anxiety. For some children on the spectrum, typical socialization suffers because of other Autistic traits they have which interfere with the ability to participate to form natural bonds and relationships and overtime therapies can help those traits and a social life may bloom. For other children on the spectrum, one of their primary aspects of their Autism may in fact be just how severely they suffer socializing in and of itself. I read your posts, and yes, I know you want your child to engage, have playdates and form friendships but often it is the parent who is suffering social isolation, desperate to connect with other parents with children like their own and get upset when other parents are not meeting half way.

This happens for numbers of reasons and I could make several points here alone, but let it suffice to say, if you as a parent are arranging playdates to fill your own social voids then perhaps you need to form a parents of special needs group for parents which are social butterflies and try to meet without your kiddos, just for you, which is probably what you need to do anyway. But please, quit trying to drag our special needs kids to playdates which are primarily for you. If you need a playdate, great, form that group page and invite those interested. But for the children, please really consider how crucial the social struggle really is before you come on group pages loaded with attitude stating you want a playdate for your kid who needs a friend but only want people who will actually show instead of just talk about it. You are neglecting to realize a tremendous truth of Autism which is, even those who desperately want friends struggle with the process of forming friendships beginning with the thought of the engagement itself. If you are this parent, you may be the first barricade between your child and potential playdates. Before you get upset and “x” out of this piece I am going to give you tips on how to make frank playdates with our children—or – “kids like yours”.

You need to understand first and foremost many of the Autistic children you want your Autistic children to connect with may have Autistic parents which means you will have to get through them first. If you display such little understanding of the depth of the difficulties which exist in the social aspects of Autism in your outreach then you will likely get little response. You need to know that yes, many of our kids do express a desire to have a friend but often the engagements are an extremely stressful event and require active guidance in the engagement because they are still learning to socialize appropriately. I have kids all over the spectrum. One could care less if he has playdates and friendships and is quite happy doing his own thing. Another is so painfully socially awkward it makes him sick, another wants friends and to play so much but misunderstandings nearly always happen and he needs explanation and guidance to work through “what happened”.

What you see happen in these groups is a fact of Autism; yes, we would like to make playdates. What you also see is another fact of Autism; we can barely get to these engagements. Ding ding ding! We have the truth! Both can be and are true. We are not just merely “talking about it and never showing up,” we have children which require a life of penciling in everything! Forcing playdates, activities, outings, social engagements is next to impossible but only if it continues to be approached the way you are attempting it. Our kids have appointments, therapies, meltdowns, bad days and parents who are worn out days to top it off. Add to that a forced engagement our child may not be receptive to or making plans our kids will not enjoy just to make a social connection while breaking our children’s precious routines and we are headed for “more trouble than it is worth”. Do not be discouraged, there is a solution to all this but I am not quite there yet. That is the prize for tolerating what I would like you to know about playdates with our kids.

Some of our kids actually do come with a list of instructions! So many parents just want to schedule playdates with any stranger in the group and know nothing about our kids. Our kids have special needs which means, these do need to be discussed and negotiated. If we do not negotiate all of this then the whole plan to socialize our kids could be hindered or backfire with yet another negative experience. Also, sometimes these playdates end up where the mom just wants a friend and to talk the whole time and distracts from all the guidance we need to give our children to help them through the experience. Like it or not, our kids cannot just be tossed in a social circle while we chit chat.

Here is the best way I can tell you to dip your child’s toe in the social pool, and the advice is ironically, normal. Take your child to a normal place like, a park. Watch to see who your child naturally gravitate to. If your child plays with a particular child the whole time then approach the parent. Say, “I notice our children are playing very well together, here is my number and anytime you may head to the park text me and we will try to join you. We will do the same”. What happens this way is that the child learns how natural bonds are made. It is not a forced bond with some random child. The child gravitates naturally to someone doing something he or she enjoys, learns to exchange numbers and enjoy each other’s company. This way you are not sending your kid on a blind date which is what it feels like.

Frankly, forced playdates are NOT natural, not for those of us on the spectrum – even as parents. They are forced, uncomfortable commitments at someone else’s convenience and made by parents for themselves who drag the child along and make them “go play” with some kid they may not even have chemistry with or communicate well with. I want my children to learn to build their own friendships. And please remember, if you score a next playdate, be mindful it is because your children had fun together, it is not about you. If it is a real friend you want for your child then allow it to happen naturally. Create a “little black book” if you will but instead of filling it with dates for yourself, make it a playdate book filled with numbers of kids your child liked. Parents make the mistake of thinking any child will do and while that may be true for typical children it simply is not for Autistic children. More often than not, for Autistic children, the answer is, “this one child will do”. Many times our kids can only handle one on one play and it is best if it is the same child they are familiar with. This is why they usually gravitate to one child.

But, the most important rule is, never toss that number. I, personally, have friends who I have had to say no to for the last several years because our schedules were never coming together. Here I am, years later, just now being able to say yes- here and there. When I mentioned “several numbers, “I only mentioned that for you, because again, often it is the parent who needs playdates scribbled in the calendar. A rule of friendship is to not place demands on friends which are too difficult. I see this being done before the playdate is even set by the parents. Learn to pencil in and erase and pencil another. Learn to make a frank playdate, and keep it frank.

Frank Education

We fought. We fought hard. We broke ourselves paying for attorneys to fight for our children to have a Free Appropriate Public Education. In my last piece, I had written about “mainstreaming madness” and how a parents advocacy for their child’s special needs at IEP meetings neatly aligns with the governments interest in the construct of the institution of education and heavily funds special needs to support its cause. No sooner than I had uploaded it had the reality of my own words begun to take root.
We pulled our children out of public school because of issues with the school not supporting our children appropriately. Our son had reached a point where he was ill everyday just at the thought of going to school. Two weeks later we moved. We tried to resume homeschooling schedule the second our belongings were moved in. It was not wise. We were of the mindset we would stick to patterns so bad habits would not form and thought it would lend a sense of consistency throughout the move. I will spare you the suspense, we were wrong.

Instead, we should have stepped back. We all melted down in about three weeks. It blew up in our faces this past Monday. I found we needed more time away from therapies, appointments, curriculum and everything. We do not even have our living patterns adjusted in our new home. I would strongly suggest to parents of Autistic children to NOT add the pressure of learning in these unconducive conditions.
We need time to adjust to our new living patterns, new home, figuring out where we like to sit, new distractions, and new arrangements of furniture. We have disorientations which interfere with our thought processing. If you do not believe me, try changing where you place your garbage can. Put it on a different side of room and see how long it takes you to quit trying to throw garbage away in its old place. All of this is difficult for us. These are things your child needs to learn in life. Little things like this can throw us off and then we feel chaos, scattered, and defeated. We have to be forgiving of ourselves. Let your child learn a life-skill of adjustment! I would give anything to go back and not pulled out the books yet. Plenty of homeschooling parents said so, but I did not listen. I was not simply dismissive, there were just too many voices of opinion. This brings me to the most difficult challenge I have ever faced with not only my own children being Autistic but myself being Autistic.
Oh how I loved college. Nothing brought me more joy than the first day; receiving my syllabus and meticulously scheduling my calendar for the next 16 weeks. A detailed to-do list right before me. The next 16 weeks I knew what day I had to read what and what day I was testing and when every assignment in every class was due. This is why some of us are such great students. To this day I do not understand why public schools do not hand every child a 9 week syllabus. Public education at minimum dictates what must be done. But now, I am an unintentional homeschooler. What is different about this is that while parents on every special needs page may give advice, they are all aware of what must be achieved in public school where as there is a new opinion, goal, value and advice from every parent offering advice in homeschooling. So many children are being homeschooled now and receiving better educations for it. What has become very clear is that I need to unfollow those groups, not forever, but for awhile.

I have found myself in possibly the most ambiguous situation I think I have ever found myself in as an Autistic person, wife, and mother. I do not have to follow common core. I have talked to parents doing everything from “forest schooling”, unschooling, deschooling, Christian schooling, Christian homeschooling with Secular curriculum, dual enrollment schooling, online schooling, and I cannot even begin to tell you the overload of ways every parent is doing it. In public school your children are prescribed an education and the marching orders are served, I do not have that anymore. So many see this as a blessing and freedom, but my Autistic traits find this to be so ambiguous I do not know what to do with it. It has caused me severe distress with each and every thread I have read. One parent is sharing how they never test their kid and the next parent is asking about required testing. I have been reading every study and book about public education and homeschooling. I have purchased more curriculum than I can afford only to find none of them work for my kids.

Ambiguous.

I sat with my son feeling like we must do this math quiz in this curriculum and both he and I burst into tears. I was terrified of failing to teach him. I saw how frustrated he was and I was still, in that moment, feeling like homeschooling meant school at home. I still only had the ingrained notion that he has to know this and do it today when his online curriculum planner said. All the pressures of school invaded our home. I was all over the map because my advice was coming from parents in the global village. A friend of mine told me, “Calm down! It’s just education – you aren’t rescuing kidnapped children”! You may laugh but it took me about two weeks to really understand what she was saying to me and let those words settle. I could not calm down. I had been so anxiety stricken I had considered medication to cope. But something has occurred to me finally, I went from advocating for my kids needs and telling the school their needs to coming home and letting other parents tell me what my kids need—people I did not even know. I also realized it does not even do well to ask parents who are homeschooling typical children because homeschooling Autistic children does not look anything like it.

I realized that homeschooling is giving my children the most appropriate Individualized Education Plan they have ever had. I can now truly focus on their needs and if health is the biggest concern right now we will sacrifice math today and let their serotonin level out after years of trauma coping with public school. My kids have spent several years trying to survive public school and now they can actually have a chance to be normal, comfortable, happy, regulated, interested children in their home instead of trying to understand when they can talk and when and why they cannot another minute at public school and receive downgrades on their behavior charts because they are not understanding the rules of talking and then being defeated all day and coming home crying or throwing up. That run-on sentence was intentional for expression. Public school IS no place for Autism. No sooner than I had written my last piece had my words taken root. But only now are they really pushing something out of the ground.

You may ask, “But wait a minute, how can public school be no place for Autism if you say you did so well”? There really is an answer to that but let it suffice to say it reinforces the problem. All of my best education was self-education. Which brings me to some final resolves. I have decided to unfollow every homeschool support group I am on because frankly, it is too many voices of opinions from those who are experts in their own children – not mine. I have written two goals for my children for now as targets which are to teach them to self-educate and self-discovery. Too many children graduate high school with not the first clue who they are or what they want to do. It is already difficult enough with Autism to know who we are and our place in this world. I refuse to gas-light my children like the school did but instead really listen to their needs and be attentive to their interests and explore them further. I intend to hone in on their interests and strengths as their drive. Perhaps we will call it hone-school. I am going to quit doubting myself and remember that this may not have been my plan but I am accepting the challenge. My one son stopped vomiting the day we pulled him out. My other stopped melting down and yet another wanted absolutely nothing to do with public school anymore. None want any of it. My kids are already doing much better so that means something is going right. Because I know what my kids need. They need to learn to negotiate life, life-skills, and how the world is set up. They cannot do that sitting in an environment that is identical to prison with prison rules eight hours a day. What my kids need is a frank education, and I am just the one to give it to them.

Frank Momma Bears

Many things are becoming apparent to me in my journey as a parent of Autistic children that fuel the fire to advocate strongly for Autistic children and parents everywhere. Mainstreaming our children is the primary source of stress in our home. As if it is not challenging enough to raise a child but, we are raising several Autistic children and doing it well, until we have to cope with the school. The school is supposed to support my children; but instead we are having to seek support and psychotherapy just to cope with the school.

I heard the schools attorney refer to another special needs parent as “one of our adversaries”- are you kidding me? I have left so many IEP meetings beating myself up because “Momma bear” showed up only for the truth to be affirmed when I overheard the discussion. We are not at those meetings at all to decide together as a team how we can help my children thrive mainstreaming, I know this because I essentially arrive to listen to them explain why the answer is no (which they have already determined before arrival). This is why “Momma bear” comes out every time. We are nothing more than the “adversary” making demands for services we know our children need and they do not want to even try to see if it helps before knocking it down.

I have spent the last couple years having the same argument with the school and I have not been able to successfully articulate my angle with them. The school argues that services and accomodations are only meant to help educate the child so if a child’s grades and test scores are good then they conclude the child does not have any “educational needs”. I argue that just because a child’s grades are A’s across the board does not mean they do not have any “educational needs”. And exactly here – we have gone round and round. It has been extremely frustrating.

A very common trait in Autism is “masking” and apparently my children’s needs are being neglected due to their own masking despite my consistent fight for their strife and struggles. A mother knows her children. If a mother is sitting at an IEP meeting desperately fighting for her child and insisting on her child’s need then it would do the child very well if the school would at least consider it whether they “see” it or not. If she is in Momma Bear mode you can rest assured she knows what her child needs. I understand the team sees themselves as the educational experts but the mother is the expert of her child, so if she is roaring, listen.

It seems what the education system is not understanding is, the point, frankly, of the social construct goals of the education system and how a parent of a child with Autism’s’ goals for mainstreaming their child neatly aligns with that; the federal government is on our side of the argument and funds it heavily to par. But, somehow, the schools keep missing this. It is extremely ironic that educators have such a narrow view of the purpose, needs and benefits of education in its whole and what education, in fact, is. It would do the education system well to be mindful of the government’s interest and purpose of education. It is the government’s first and paramount form of societal control. It does not merely prescribe education, it means to conform citizens and mainstream them into society. If our children do not get the support they need to socially connect, communicate, and thrive in our schools then it is less likely they will become contributing members of society. Our children need the support now so they continue to thrive later otherwise you are just shoving them through the chute and passing the buck. Pardon me a moment while I check to ensure I used the phrases appropriately…

Precisely.

We seem to have gotten a bad wrap have we not Momma Bears. The IEP teams treat us like we are overbearing helicopter moms who do not like to see our Autistic children in any discomfort – as though we reinforce their Autism. This makes me ROAR! They fail to see that we knowingly send our children out of their comfort zones on a daily basis. We are striving to get our children through this construct for the same reasons educators preach about education and the government insists on the construct. But, they make it so hard for us to do that they doom our children for failure. My children do not even know what Autism is and the school expects them to overcome it before they have even learned how it is affecting them and how to negotiate it. They do not even know why they are having a hard time. This sink or swim mentality is causing children to give up before they have even entered the race. Especially with Autism, where perfectionism has to be leveled out with encouragement and reframing perspective.

I know without a doubt that I am a full on roaring Momma Bear. The problem is such an epidemic that at ASD diagnosis we should be handed a starter pack complete with an arc therapy chew, a weighted blanket, and the “Momma Bear” shirt with the Autism puzzle piece on it. There is an entire market merchandising these Momma Bear shirts as though we carry the stigma of a roaring parent. They are available on every ASD related site. Some days I proudly wear mine embracing the role as I constantly fight for my kids special needs; other days I am infuriated this is the status quo.

There is no greater stress in my home than the fact that I have to deal with a school which will not listen to help my children thrive even in their tender elementary years (!!!). There is no greater stress in my children than having to go. I have told the school repeatedly they will not back me into the homeschool corner. So many others tell me the school will constantly fail my children and if that is the stress for my children why do I keep sending them, why not homeschool? Do you see the irony there? My kids are uncomfortable with school so I should keep them home? The school is always going to fail them so stop fighting for them? Bingo! I know it is hard but if they never go they will never be able to integrate into society later. If the school does not support them to help them integrate appropriately then they will resign. I am literally telling the school how to make my children contributing productive members of society and I really do not think it is acceptable that they keep failing them and everyone knows this. I must advocate for my children and as long as I am the only voice they have I might as well roar.

What is more is, I believe the government agrees with me. For all of these reasons I believe Autism in and of itself is in fact an automatic educational disability. Education is not just about grades; it is absolutely a social construct. A child may have straight A’s but if they are becoming physically ill to perform to standard then the school is literally making our children sick. If our children cannot connect socially then that information is isolated in their brain and not exchanged with the world. There are so many aspects and issues with Autism. And lest we forget that a common trait with Autism is masking compliance so just because the school does not see their sufferings is not an acceptable answer, especially when it is noted they do not project or emote as a typical child which is exactly what the diagnosis says.

Frankly, Momma Bear will roar and you will know.

Frank Emotions

Once my children were diagnosed with Autism I was introduced to the world of therapies, support groups, and drowning in books to learn about what Autism even is- but more specifically, how it applies to my children. I struggled to find a support group which I found both helpful and comfortable, so, do not be discouraged-it took me about ten “unfollow”‘s before I finally found a good fit. In this time I have heard parents exchange names of doctors, preferred therapists (or fired therapists), and which therapies are best for specific issues their child is experiencing. They also exchange a wealth of methods to try and what did or did not work and why. It took me a while to understand which issues would be addressed at which therapy. There are some particular issues you may address that only a handful of other parents in the global village have experienced further proving how unique our children really are. In the list of overwhelming information of therapies you will read about Applied Behavioral Analysis therapy, Speech therapy, Occupational therapy to no end. What interests me is the most seemingly neglected therapy which I have never once seen mentioned, ever, except by yours truly-me- which I will argue here has been the most crucial therapy since my son became verbal-Emotional therapy. We are even adding children to the therapy now. If only we had heard of this even when he was non-verbal (or the rest of them) . If I could reverse time I would have focused on emotional therapy before OT or even dabbling in ABA.

When we are handed the full report of our child’s diagnosis it too lists ABA, OT, ST, Social Skills etc but no where even on that documentation did it recommend emotional therapy and how beneficial and life-changing it can be for your child. Our children are struggling with communication, sensory dysfunction, and behaviors to par which makes it difficult for them to interact, engage, and relate to others. Even their most basic senses are overwhelmed just by living and breathing. All six of their senses-yes, six-are overwhelmed and it is a process to regulate all of this. It is a mission of discovery, assisting and teaching them to self-regulate-hopefully. Your child feels all of the same emotions of any child at a much more extreme level and does not express them or regulate them in typical ways raising the intensity even more. All of these things are like sticks of dynamite lying around waiting to set each other off in a chain reaction. It all effects each other and it will not all work together without the emotional aspect being addressed appropriately; not even ABA which is why ABA has such a traumatizing reaction for many parents and their children on the spectrum.

Emotional therapy can take all of those therapies and tie them together in a spectacular bow. The therapists are trained in being able to connect with the child on an emotional level and build a report with the child-in short – build a relationship! They use play therapy to help the child learn to play, learn through that play, and communicate through that play to really gain a sense of what is happening within your child. They can see what your child is enjoying or when they resign and understand what just happened within your child. The therapist will listen to your family dynamics and needs. The therapist can reach children, figure out what is going on, and help them identify what they are feeling and learn to express it, negotiate it and cope. The therapist helps the child negotiate an abstract world where rules change, social expectations change, schedules change and even moods, drives, motives and desires of people. Faces change and they struggle to even interpret facial expressions and the emotions they are conveying!

For example, our therapist has been helping our son negotiate the confusion of siblings and parents liking to scare each other with Halloween masks and such but the baby is terrified. It is so difficult for him to understand the bad reactions he is getting from scaring the baby or why we keep telling him he cannot scare her. All of this leads to emotional misunderstanding for him. It has been quite a bit for him to navigate. He will have to work through the ambiguity of the emotions of others from person to person and he will not learn this through ANY OTHER THERAPY. This is a tremendous task for all kids on the spectrum for one reason or another. No matter what their constellation of markers in Autism -most or all of them are suffering connecting to others, forming and maintaining healthy relationships. They must have emotional therapy to manage all of their particulars, identify and express what they are feeling and negotiate all of this with others. So, why do I not see ANY other parents talking about emotional therapy for their child?

I received a message from my sons teacher saying he would need “extra steps” today. This phrase basically means he is triggered, overloaded, overwhelmed, melted down etc- and will need our “first responders” methods from the second he gets in car all the way through to bedtime to help him cope with the events of the day and recuperate his senses and emotions. She said he had told a little girl at recess that she was “annoying him” and “go away” and this made the little girl cry. His teacher apparently had a talk with him about this. She was absolutely right, Jude came home an emotional mess. He was very confused but not for the reasons the teacher believed he was. I told her, I am sorry for the little girls feelings but on the brighter side of things he expressed what he was feeling and we are happy for that. Jude is learning BOUNDARIES and we feel he did nothing innately wrong. He identified how he felt, he expressed it and told her to go away from him-just like his therapist had taught him to the day before! He did not hit the child, he did not call her names-he created a boundary and self-advocated – this is good! While the little girls feelings were hurt, my son is not yet equipped to manage her feelings as he is just learning to identify emotions and express his own. There are adults who still do not carry this emotional equipment and so, if my son has come this far from being non-verbal in this little time-we will take it.

He has only been in emotional therapy for six months and this is a hell of a breakthrough. His therapist had done role play with him merely the day before and did an entire recess scenario as to how to deal with kids who do not want to play with him and ran through different scenarios. Precisely these words were used as a way to handle the situation. What this means is he exercised it. It worked. The problem is he did go to school and use his new skill and it blew up in his face when his teacher talked to him about what she felt were not good choices when he had done precisely what he was taught to do. How confusing and frustrating for me, let alone my son with Frank Autism and frank emotions! The issue here is that we now have to go back to therapist and explain to her the confusion of what happened and help him cope with this crushing feeling that he did what he was supposed to and was completely misunderstood again and got bumped down on his ridiculous color chart and was told he made bad choices – choices he was taught to make. I, for one, am PROUD OF HIM and we, as his parents, commended all that was correct. A child with Autism cannot navigate all of this without emotional therapy! This is just one single scenario in a moment of my children’s lives.

So, again, why am I not hearing of more parents of Autistic children accessing emotional therapy?! We had gone to his neurology appointment and we discussed all the life-changing moments that have occurred in the short time he had been in therapy. We proclaimed his therapist is our answered prayer! His neurologist knows we have opted to negotiate Jude’s youth without any medications to not mask anything and simply discover and negotiate. At the end of the appointment she blessed us to continue course as she could see such dramatic improvements and was thrilled to hear about his emotional therapy. I asked her why I am not hearing of any other parents in the community doing this therapy. Her answer was ready, because of the stigma of “counseling”. It is called counseling and the second parents hear that they have all these negative feelings surrounding counseling and why they are there. They feel icky about it. They feel like they are failing somehow if their kid requires counseling. They feel so many things and what they picture when they hear counseling must be their kid sitting on a couch talking and sharing deep dark secrets (even the non-verbal ones) lol. I told her, quit calling it counseling then. Start suggesting “emotional therapy”. Everyone in the Autistic community has grown accustomed to the world of “therapy”.

My sons emotional therapy is happening at the same building as all his other therapies which is wonderful because all of his therapists can communicate about him with each other and it all ties together beautifully. Because all of their issues are connected, so should their therapists be.

Emotional therapy requires NO referral. Any parent can access this and I urge you to take advantage of this even before you finish the whole process. Any child can benefit from emotional therapy. Coping and setting healthy boundaries seem to be a skill not being extended to children. We see how grown adults struggle with boundary issues even on social media and this is confusing even to neurotypical children. For example, while we understand the other little girl at recess had hurt feelings and we acknowledge that, we do not own that and neither can he. We have to teach him self-advocacy and appropriate boundaries to protect himself. We cannot teach the other child coping skills and boundaries but there is emotional therapy for her as well (wink) to cope with her emotions, to be frank-and it does not even require a referral.

My goal here is to hopefully help you by giving you the gift of a different perspective and change the way you think of counseling. In addition to going into secret super private groups and being at your wits end and saying so to people who live no where near you to help you help your child-be proactive and seek emotional/play therapy for your child. The therapist will also help you and encourage you-not judge you. It is not what you think it is. It is play therapy. You can ask for emotional/play therapy and you will arrive at the same hopeful place we have and be frank with your child’s emotions.

Frankly Speaking

If you speak with me in person, you might not believe I am the same person as the one you have read. There is a vast difference in my verbal and written communication abilities. Just because I have the vocabulary and can type my thoughts as quickly as I think them does not mean I can find the words and articulate them enough to verbalize them on demand.

Majoring in Public Relations and Communication in college helped me with many of my communication challenges in respect to learning communication models and analyzing receptive communication. It also helped me to identify ambiguous words and ask for clarity. It also helped me in my attempts to hear patterns in speech and word choices and gain an understanding of how framing can reveal what people actually think and feel in a conversation when I am not correctly interpreting social cues or facial expressions. It helped; but, after class, I was thrilled to put on my headphones before briskly walking across campus with my music on so I did not have to listen to any chatter. I did not remove my headphones until the professor arrived and was ready to begin lecture.

Perhaps the explanation for my Autism going under the radar so long was because I stayed under the radar due to my constant miscommunication issues. It is frustrating even as an adult. I would much rather just send a text or email-and even those are long proving the struggle. But all the above is stated as yet an adult with Autism and further one who still breaks into tears upon the stress of the sheer act of conversation and the pain of miscommunication.

As a mother of children with Autism who were non-verbal until they were almost five and knows they continue to have communication challenges even after speech therapy – I know the pain from both perspectives of parent and child. Here, I would like to share two very different methods in two very different children to begin communicating needs and building speech.

One method you may be familiar with is called PEC books. If you are not familiar with it, PEC is an acronym for “picture exchange communication” books. However, I found a flaw in what we were given thanks to my own Autism and was able to tweak a perfectly effective solution.. When Vanderbilt Children’s Hospital sent me home with their PEC book I could see immediately where it fell short by my own literal thinking-the objects in the pictures my child was meant to point to communicate were drawings and not the literal thing my child wanted or needed to communicate. Drawings are ambiguous.

Thanks to the invention of smart phones I was able to take a picture on the spot of every single person, place and thing my child came into contact with, needed and wanted. And as my Autism goes I grouped these photos into specific categories. I took pictures of our car to indicate leaving and then each store front from the parking lot, I took pictures of each park, church, therapy, and took pictures of the therapist he was seeing. I created a “PLACES” collage with a collage maker application. I then took pictures of HIS cup, HIS favorite foods, snacks and drinks and built him a menu for him to point to exactly which food he wanted individually. I grouped them by breakfast foods, lunch, dinner, snacks and drinks etc. With the collage maker application I was able to do this in moments, print, laminate and use a hole puncher to use a key ring to bind. But what was more is after the collages were made they were saved for use on the go, even outside. The key is to literally have picture exchange communication for their own needs. Initially, for them to understand the NEED for functional communication you have to begin with their own desires and respond to them. Take pictures of bath time, bed time, their tooth brush, and their personal toys and games.

For them to appreciate communicating you will have to respond to what they point to. When we started the PEC menu, it was a bit crazy the first week. When we gave him his food we would show him the picture, point to it and say the word. The next day or so he was already pointing to items, so, we responded quickly in delivery as he appreciated the function of communicating his desires. Quickly, he caught on to the function and was thrilled to exercise for the first time his ability to have a demand met-and he had a blast with it. It was liberating for him. We were giving him three or four different items and even handing him things he did not even really want but it was more of a necessary life button he had just learned to push.

If we had not responded he would have lost trust in the only method of two-way communication he had besides screaming while we run through thirty things guessing upsetting him more each time we were incorrect. So, I urge you, do not say no. Get up 100 times and deliver -just fail to add Oreos to the PEC book-surprise treats are great. Always attempt to get them to say the word but make it fun and not forced-the words will come. Pressured speech is also frustrating and I will address that in the next tip. You have to prove function of communication first. Imagine four years of not being able to so much as point to a need. Be sure to take a picture of your home also so when you are out you can point to the picture and say “going home”.

Eventually, you can build your child’s vocabulary with pictures of YOUR couch, tv, potty, table, chairs etc. I cannot emphasize enough the need to clearly explain words “and”, “or” and “but”. Go watch Little School House Rock’s “Conjunction Junction” to understand why these words are so difficult for them to jump thought tracks this way. So much language we use are terms they do not understand. As speech comes in be sure to ask your child if they know what the word you used means. Do not assume.

Another method I have recently discovered is quite sweet to say the least-singing. It is no secret that children learn through songs but this is a whole different level to what measure this is required in our home. My littlest one we noticed at a year old acts out entire scenes from movies but was not talking. She can sing songs and actually has quite a vocabulary of about 25 words and a few phrases. This sounds right on the mark for a typical child but there is a striking, although adorable, difference in her- and if parents are not careful it can go right under the radar.

She only echoes, repeats and sings. She will repeat back those words if we say them in a sing-song manner but she is not using them to communicate for the function of communicating. She can sing her A,B,C’s , Twinkle-Twinkle Little Star, and a few other songs, she can count to ten at 28 months old, she can make the sounds of every animal in the Brown Bear Book and her sounds puzzles, but she only speaks through song and sounds. She is a most enchanting darling and I have zero complaints over her adorable ways. But, when it comes to her needs, just as her brothers did she will make sounds and complain “eh, eh, eh” and increase intensity until her overtures are met with response.

I know that she can repeat the sound “ma-ma” and may attempt to insist she say “ma-ma” each time she needs me but she is offended by that. She hates pressured speech. When I was trying to push her to use the word “cup” when she wanted her cup she would become very agitated, offended even, at the exercise. This is when I realized pressured speech was certainly not going to be effective. I had been trying it from the beginning and it had not worked. But, I knew she loves to sing.

Every word my child has in her vocabulary is through singing with me. And now I am only communicating with her through song. I sing, “let’s go take a bath”. I sing every word I want her to repeat. She still does not say “ma-ma” to me or “da-da” to dad, or call any of her brothers by their names. But I did manage to teach her the word of one of her brothers by singing his name. So when she does gain the sense of functional communication she has the words. They still are not really attached to anything beyond the sound of the sing-song tones. But I can reach her through sing-song tones.

In a matter of about two weeks of earnest singing I have successfully managed to teach her to ask for “cup”, “paci”, and “outside”. These are the first three words she has successfully asked for something so the function of communicating needs is hopefully setting in-even if it is only received in song. This would have been a whole lot more enchanting if God had given me a singing voice. The fact that her first sing-song words were “Thank you” is just as delightful. Now we just have to sing all the words of pictures from her PEC book.

The key to communicating with your child is to find a way to reach them. We have a long way to go even with the older children who do have a vocabulary. Communication involves so much more than words. For one child we need constant pictures for visual communication to reach him and for another child we have to sing-song words and this has not even taught her to functionally communicate yet, but it has helped us find a way TO communicate with her-frankly speaking.

Frankly, Fight for Them

I FEEL stronger and bolder than ever this school year. The shock factor is over – no more tears. I expect the IEP team to refuse my child’s needs and I am ready to fight this. Last year, I cried at every iep meeting and I will say it was mostly due to the shock and awe of going in there with documentation of what my kids needs are and thinking, “How can they argue with this documentation?” They did-plain faced. I watched them deny to my face what we have known about our children for years. It took my breath away. I swore to myself at EVERY IEP meeting I would NOT cry and each time I became melted down from the hours of talking and struggling to understand how this was happening. But not this year. I am ready. Are you?

I am hearing a lot of chatter from special needs community parents who are either “new-to-diagnosis” or just beginning kindergarten and I am prayerfully worried (if those terms should merge) for them and their children because just reading their questions I can see many of them do not know their child’s most basic rights or the laws surrounding their child – and that worries me. I can see now in retrospect how the team played on my ignorance. But here is what I do know, just because a parent may be ignorant to the laws and process does not mean the team is not responsible for following them. I feel a need to assert the importance of the IEP in maybe some perspectives you might not have heard before. The more seasoned parents are so used to the acronym as part of their vocabulary that I worry even many of them have not quite grasped the reality of this document. Do not expect the school system to explain this to you.

If you are not already aware, let me be the first to tell you that it is in the Federal Governments explicitly expressed INTEREST to support your child in the public school system. The Federal Government cares. Supporting children as early as possible can mean a life time of raising up independent contributing members of society versus children with unmet needs becoming dependent on public assistance for the rest of their life. Education is first and foremost the most significantly important social construct we have. Some days it feels it is prized even over family life and that particular punch is felt in compulsory attendance laws to par. The Federal Government cares so much they have Child Find Laws that have obliged educators to actively seek out children with needs and with haste address them. Some states, such as Tennessee, have additional state categories such as Developmental Delay, for IEPs to blanket children in for services and accommodations because they have needs that require attention but they haven’t quite yet pinned the tail on the donkey as to the source of the issue-whether this child has a disability or explanation for what is going on no matter how big or small that may hinder educating them. Many children are not discovered to have a learning disability until they arrive in the learning environments. Child Find laws are proof in point the government cares.

That said, it can be a mind blowing experience when educators battle you every step of the way at IEP meetings until you learn just how serious this IEP is. You are not walking in to negotiate some speech and get a “yes” or “no”. For a moment, I want you to hold your breath on what they will or will not agree to and focus on what the IEP is and hold on to a different perspective; the IEP is a legal document alerting the Federal Government to a full description of your child’s needs and how educators intend to address them with measurable goals tracking progress as to what is and is not helping your child to become educated, independent, contributing members to society. Do you feel the weight of that? The IEP is governmental OVERSIGHT on educators and what THEY are doing to educate this child. It is so important to the government they PROMISE the money to the school to fund these needs in public school to the point of even giving them the money for personal aids and supplying everything your child needs to succeed. So any notion you had that the school was short in budget is an absolute wash. It’s the governments primary concern and funded to match. The government knows educating as early and possible and setting them up for success means less government spending on social programs and support later. It means a higher driven economy of working adults feeding in to the economy.

Years ago, in 2012, I showed up to IEP meetings thinking “IEP” was just random lingo for signing paperwork for my son to take some speech. After signing my husband and I thought they were always so nice and even strangely celebratory afterward. Fast forward to years later, insisting my children had more needs and meeting resistance. So, I found myself begging the question. “Why then? ” It wasn’t until I started digging – fighting for my children’s needs, reading laws, and finally took an advocacy course through Vanderbilt that I learned it is NOT about the money. Money is not the root of all evil-PRIDE is. They don’t want the oversight. The mood of every meeting changed the moment I looked through IEPs of past only to discover they left out every discussion of my child’s Autism. Not a single phrase in that document described how we had known since he was two he had AUTISM and this was fully discussed. They called IEP meetings, gave him some speech and sent me on my way. I began then, going through every single word in those IEPs making sure whatever they did not say in there to fully describe my children and their struggles – were in there and documented. I made sure to write a complete statement to attach to the IEP since they so meticulously left so much out that my statement alerts the government in documentation to who my children are, their particulars, what I FEEL they need, what the doctors STATE they need and my requests. I had to set aside everything the school said and whether they agree or not. And whether they would support my children appropriately I could not control-but what I can do is provide a “basis of knowledge”. I told the government. Needless to say moods have changed. The celebrations of how easy this ignorant parent is have turned into meetings where we aren’t “discussing” and arriving at solutions for my children at all–I show up to their decisions and denials of what every doctor and myself has said my child needs. And in their refusals to appropriately support we have lost a lot of way for my children and they have SUFFERED because of it. When I started paying attention to what the educators were saying and documenting – demanding things be states in the IEP – moods changed.

No matter what your child’s needs are, whether the school agrees or disagrees, or what the decision of support is – make sure that IEP ACCURATELY describes your child. When I read my sons IEP it described a whole different child that contradicted my sons abilities and needs. Make them omit any and every detail that is not completely accurate and express in writing what they haven’t if you feel it should be in there. You do not know which details will be significant later. This IEP is not just for you and the school-this is for the Federal Government to ensure the educators are doing their job of addressing these needs and supporting them in its full interest of raising your child up to become an educated, independent, contributing member of society. The more they do now-the less they do later.

Do not wait until everything feels terribly wrong to start learning your child’s rights. Walk in with the armor. The moment you learn you must attent an IEP meeting read those procedural safeguards, know you are allowed to disagree, you do not have to sign, you may make corrections, you may add statements, you may make omitions, clarify points, state your child’s strengths and weaknesses YOURSELF ALSO, look for inconsistencies, do not sign that day in the moment – take it home and read it over with a pen and a cup of coffee. If you do not know the terms and laws surrounding FAPE and are not well read on IDEA ACT PART B then you should seek an advocate who will help you learn the seriousness of your child’s rights and help you learn to navigate all of this. If you have reached a point where you feel like your child’s needs are not being met seek legal council if anything for peace. A special needs attorney can appear at the meetings to negotiate the IEP and make sure everything is on the straight and narrow before a mess happens. If you know it has been a mess for awhile and something feels wrong – a simple consultation with a special needs attorney may be in order.

You are not negotiating service for cable, you are signing legal documentation that calls the government to their interest in supporting your child – and the team knows it. Shame on me for not knowing my childrens rights sooner, shame on them for knowingly circumnavigating them.

Frankly, it is okay to cry, be emotional, feel angry or even think they hear the music of the wicked witch of the west when you walk in – this is your child. Learn their rights!

Frankly, fight for them!

Frankly, We Don’t See It

I have spent the better part of a month trying to tackle a discussion on the topic of Autism: anger, meltdowns and discipline. Why so long? Because there are so many different conversations others are having about it and still the conversations that are not being had. Instead of trying to speak to all of the infuriating ones I want to be frank about the issue we are personally dealing with primarily- the problem of how OTHERS are actually perpetuating precisely that which we are trying to overcome! I am found here; I must be frank and tell others how they make the problem exponentially worse. It is a problem I have desperately tried to express at our IEP meetings with all teachers, administrators, and school board in the presence of attorneys and they still ARE NOT GETTING IT! The problem of hearing them say, “We don’t see it”.

I have spent many years acquiring evaluations from specialized doctors and therapists only for it to fall on deaf ears (IEP team) and feel like I am banging my head against the wall trying to get them to understand the fact that just because my son does not display his emotions in a typical way that others can interpret does not mean he is not feeling anxiety, upset, anger, physical pain, stress, or emotional defeat and hurt. They have gone from outright denying Autism, to denying sensory issues, to new evaluations that reflect what his formal diagnosis states and ignoring ALL outside evaluations to support their denial of services and/or accommodations that my child needs.

My child has a whole range of extreme emotions and sensitivities that he has not yet learned to identify and communicate effectively. It is THE biggest hurdle of Autism in and of itself. Part of his diagnosis is that he does not interact and respond “appropriately” or “typical of others”, so if you are looking for such specific identifiers to understand and interact appropriately with my child then you will not successfully do so, not in a way that you have reached him to teach him. You will walk away with your own interpretation of the engagement and be none the wiser because you sought responses YOU understood, that were meaningful to you, and not what they meant to him or what HE intended to communicate. I cannot count how many times I keep hearing “he seemed fine today”, or “he cooperated” . That sounds great – that you think so – but my child was returned to me a defeated broken mess. Yet, because one did not see it I am met with skepticism and doubt as to my ability to translate my own sons experience and you refuse to accept what I am telling you is happening–“delayed effect” meltdowns. The meltdowns which begin in the car and carry on throughout the night that tell me he suffered at school today.

Parents, this is a thing. People, this is a thing. Schools, this is a thing. Admin, this is a thing- and a severely common issue in Autism and I plea with you to please quit dismissing the parents who are telling you this is happening! You are NOT HELPING THE CHILD by dismissing this and worse, you are causing the child MORE PAIN and trauma every day you deny this as, at a minimum, a possibility – and work as a team to tackle this beast. Why on God’s green earth would a parent walk in and plea with you that their child is suffering so much at school that the child is kicking them in the jaw because they do not want to go back if it were not true? What kind of parent wants to walk in and say that one of all six of their children kicks them for nearly 30 minutes because they do not want to go to school?

Think for a moment as to how a newborn baby has only – cry- to strangers. But, the parent knows EVERY CRY their baby has and exactly what the baby is communicating with each specific cry. Think, also, how each baby has observable physical cues that tell the mother the baby is hungry before the baby even cries in hunger (rooting) or even subtle changes in sleeping positions that cue the mother of constipation or ear ache. A mother knows every intricate detail of her child. So when parents must entrust their child in the care of another, especially a child who does not interact, respond, or comprehend the world or communicate in typical ways, it will do the child wonders if you will listen to what the parent describes to you about their child’s idiosyncrasies and specific cues. Parents are always asked in reference to a baby what the babies specific signals are for basic needs such as hunger. This is so necessary with Autism and more so than a typical child. An expert in education does not equate an expert in my child or my child’s Autism. AUTISTIC children are truly unique in their experience and expression of the world. That is the essence of Autism. The Autistic brain is wired differently so you will not see what you do not understand about my child-especially if you cannot even see what the specialists have discovered already. My child has a whole spectrum of sensitivities and unique experiences which means, as long as you refuse the translations as to what is happening with my child – we cannot help him! You have essentially become the roadblock in his education.

At my sons therapy the other day, a therapist witnessed and documented precisely what I have been trying to explain at IEP meetings. In her perception, he was working hard and cooperatively and the session was going well. I knew he was finished and not receptive anymore. Worse, she had no clue he was wounded by her and immediately suppressing and internalizing his negative experience. I told her, “He is upset, he is done” . She looked at me in confusion and said he seemed fine. She did not see it. I directed her to see his eyes and mouthed silently, “that means he’s upset”. She had complete confusion on her face but she took the pause and observed his eyes and asked him, “Are you okay or are you upset?” A resounding, “Yes, you make me cry, when my eyes do this I’m gonna cry” (still squeezing them). My heart was overwhelmed with the breakthrough! This was the first time HE recognized and stated the identification he was upset and stated it effectively! She asked why and he told her it was “too hard” for him and he did not want to do it anymore. But he was also embarrassed because she told him to stop being silly which his behavior meant he liked her-til then. She destroyed in a moment the rapport she had nearly established. I saw his hurt the second she called him out. I praised him for the recognition of his emotion and stating it and made sure she understood the importance we respond to his communication (she was new to him). This was HUGE! He confirmed this a moment later when we moved on to his counseling session and we praised him again. The huge breakthroughs we are having are thanks to counseling (through play therapy) which we are finding to be the most paramount therapy right now.

But, here is the “but” rearing it’s ugly head: had I not happened to be sitting in on this session (because she was a fill-in therapist and he asked me to go), his experience would have been completely missed by her and misinterpreted. She NEVER would have observed his frustration because he did not display it in a typical way and she would have continued to push the session. What’s more is the gross underestimate of how deeply these frustrations cut him and their “delayed effect” which fuel his refusal to go back. This is precisely what is causing him perpetual trauma. Because others cannot read him they are not responding to him appropriately. He internalizes these moments throughout the day and then he comes home and unleashes “The Wrath” that you deny exists because you “do not see it”. While this moment may not have effected a typical child much, it was brutally harsh for him. He is VERY sensitive due to years of being misunderstood exactly this way.

My little guy comes home to his safe place only for we as parents play the ambulatory role of “first responders”. He has not yet learned all the language to express all the things he means and all the misunderstandings and pain he experiences while gone. When he cannot communicate that to the people who love him and do care for him- he becomes further wounded and frustrated and all of that erupts into a now wrathful Godzilla who is piling every object, dumping buckets of hundreds of Legos, hundreds of blocks, hundreds of figures, cars, toys of every sort, stripped bedding and pillows into a pile we call “Wrath Mountain” (think – volcano) as he roars on its peak. Because we cannot understand what happened during the day and he does not want to experience it again, this primative dinosaur is willing to regress to his completely non-verbal primal days and just kick, scream, throw things and sometimes even make a swift connect with our face to avoid going back again. All of this WOULD BE AVOIDABLE if he was not so filled with painful rage from being so misunderstood causing an eruption of emotional disturbance. He does not know or understand that everyone does not experience the world as he does so instead he feels ignored when others do not respond with compassion.

Compassion means you sympathize and have concern for the sufferings of others and you cannot do that if you dismiss the way my child suffers and fail to understand his expression of those sufferings. You certainly are not concerned if you have stated, verbatim, that it only matters how he is there (at school) and how he is once he leaves is not your concern. You literally said that to me! When an Autistic child has delayed effect emotional disturbances it is crucial to learn how HE communicates what he is experiencing in the moment to relieve the pressure so that you may help build the bridge from him to you by helping him to translate his experiences into the language that most people speak. In short, you have to know what HE means to say to be able to teach him a new way to say it – much like a foreign language teacher must be fluent in both languages.

When my child squeezes his eyes, you must accept that this is HIS involuntary signal (Tourettes) for experiencing SEVERE internal STRESS (severe to him) . Do not dismiss his signal in your ignorant expectation of seeing Godzilla rear it’s furious head to communicate the exact same thing just because some other Autistic child does. He comes home and unleashes Godzilla – in his safe place because that is HIS personality. Just because he does not express himself in the way YOU expect him to does not mean he is not experiencing some sort of chaos, stress, sensory overload, exhaustion, defeat, hurtful social interaction or any number of triggers that cause him internal disturbance or physical pain which he also internalizes (which we can show medical records to confirm).

And I speak to all who seem to have an expectation of my son to behave in a way you expect whether it be appropriate or inappropriate. He cannot communicate WITH those who are not receiving his forms of communication. Even in the moments he may have seemed fine to you, does not mean he was fine. “The Wrath” is not some spoiled attention seeking ploy or lack of discipline. It is a delicate situation which we are trying desperately to overcome. Compassion is what WE feel when we look past “the wrath” to understand his pain.

If it is compassion you feel, I turn this back to you (IEP team) ; frankly- “we don’t see it” – and so much worse – neither does he.

I Will Be Frank

I will be frank.
I am going to say this as gently as I know how to. It has been a LONG time since I have even bothered to make any serious expressions; but this is impacting even my interpersonal conversations.

It would be pretentious of me to attempt to tackle the task of regurgitating YEARS of learning and research in Autism. I will no longer dare my friends to take on the task of years of researching the disorder (no cure-just negotiating it) to understand me, my children or others with Autism. I am still learning and every person has it differently as they process information and experience the world differently. Frankly, that is precisely what you need to know. You do not even have to understand it and I will not even bother to ask you to because I now know what understanding entails – you will not be up to the challenge (especially since years of knowing you has already proven that truth). What I AM going to ask you to do IS important – ACCEPT what we tell you our challenges ARE (what the doctors have found) and quit making assumptions about something you have not spent years learning about yourself by talking to entire teams of doctors of every sort, and specialists and therapists to learn and insurmountable research to comprehend Autism.

It may not feel like it, but I am going to try to break this down to you in the simplest explanation possible to clear the air of your misunderstandings so we do not have to cringe every time we hear this. I am going to attempt to be as gentle and tactful in this response even though a part of me wants to call you out in your ignorance in the same condescending tone we are given each time we hear this. I have learned much more grace with the ignorance over the last couple years, but this has to be squashed for OUR COMFORT. You will sense my frustration but please do not take it personally. I am going to be blunt-for all of us who keep having to respond to these types of insinuations and twirl around them. So, here goes…

AUTISM IS NOT A PARENTING ISSUE! WE HAVE NOT MADE OUR CHILDREN AUTISTIC BY FAILING TO MAKE THEM NORMAL!

You may not realize it but there are MANY ways you insinuate it is somehow our lacking by the silly things you say to us without thinking.

My Autistic childrens social anxieties are NOT because we have not socialized them enough! Often the anxiety is INCREASED and situations worsen until they are socialized with appropriate support and therapy to help with the way THEIR BRAIN is processing communication, social cues, understanding of play (because many do not even play the same) and sensory issues during the play; and then they have to learn to play with EACH child they play with because of the ambiguity and relational issues. So, NO, the problem is NOT that we have not taken them to enough play dates. The problem is that my childs brain is WIRED DIFFERENTLY so these moments do not come naturally and stress my child out. It becomes overload or traumatic for many children on the Spectrum. When you say this you insinuate that my child does not really have Autism… We just have not tried or exposed my child enough. You may not realize you are saying it but you are and still some of you- I know you mean exactly that. Please stop saying this to parents who have children with Autism. It hurts. The social/relational ASPECT of Autism is A challenge they have BECAUSE OF AUTISM. It is not as simple as dropping our kid off at play dates and Yay… We’ve solved Autism. For you to even insinuate the solution is as simple as that is extremely ignorant and clumsy.

If someone tells you their child has Autism-ACCEPT THEIR CHILD HAS AUTISM and that child’s brain is wired differently. If a parent says,”my child has Autism” then the only thing you really need to say, if you even care to know is, “oh, how does Autism affect your child and what are your child’s CURRENT challenges?” You do NOT need to ask if the child has “an actual diagnosis”. You do not need to say “the child seemed fine the other day” at this or that moment. This is one of the most frustrating remarks we ALSO hear!

I am speaking for the AUTISM COMMUNITY AND MY FAMILY SPECIFICALLY!

I have Autism. I have Tourette’s. I have sensory processing disorders. Two of my children have Autism. One of those also has Tourettes. Every person in this house has sensory processing issues. My husband has PTSD. My daughter rated VERY HIGH on her Autism screening and is referred for FORMAL TESTING AND EVALUATIONS. So when we say we have Autism please do NOT SAY the ways you think we may have just fallen short in life to be normal like you. We have ACTUAL Diagnoses and you have no right to ask us to validate that. This FORMAL DIAGNOSIS is one of the FEW DIAGNOSES THAT CAN BE TESTED, MEASURED AND GIVEN IN FULL CONFIDENCE. It is even scaled to what measure. And in OUR PARTICULAR CASES we are not just “a little on the spectrum” – we have rated at SEVERE Intensity. So, just because we may appear fine or have done well when you saw them one day this year – or month-does not mean your moment of witness debunks our diagnosis.

We are people. We have good days and bad days and we are constantly in therapies working through our challenges which is MANY HOURS A WEEK so that WE can function around YOU doing the things people expect – which is a whole lot more than we can say about your willingness to even try to meet us in the middle. Trust me, if we were there that day at all- it is because we were ALL in the best possible state of regulation. If my child handled it well that day it is BECAUSE we managed to get everything IN sync, and the therapies and knowledge have helped. To even suggest that moment meant somehow the dx was fallible is mind-blowingly pretentious on YOUR part as it has taken YEARS of seeing experts, a whole team of doctors who have been evaluating our children-to CONSENSUALLY agree on that diagnosis. It is not like walking in with a rash and saying, “oh it’s probably just an allergy to your detergent”. This is not your needle in a haystack landed dx by a single doctor who thought they knew.

So please, just because my child appeared to cope well and everything was harmoniously in sync for the hour DOES not mean we have miraculously opened my child’s brain, rewired it and solved Autism.

And for the things we have not nailed down yet, PLEASE quit making it seem like we need to fix that faster with any of the typical solutions that work on typical children. Our children’s brains do not make the same connections and frankly, neither do mine, so we are legitimately learning which connections ARE being made and working with those.

Autism is NOT a parenting issue; we have issues in parenting because our child is a child- first and foremost-and one (several here) with challenges. So while we have not overcome every aspect of our childrens challenges there are some parenting issues that happen because it has TAKEN US YEARS to get that “actual diagnosis” and even begin the process of exploring each child’s individual brain and attempting negotiations. The diagnosis is not wrong.

Quit confusing high functioning Autism for barely having it. Autism is Autism and there are different ways of having it, it is a spectrum, and there are ALSO different levels of “functioning”. Functioning does not equate with severity. There are people who are not even on the spectrum who barely function in life – and there are people like us with high severity but functioning high. High functioning does not mean less Autism. So that just needs to be spelled out for you. And, you did not see how long it took to cope and recoup after that hour you saw them this year.

When you say things like this, it is received as accusatory – you put us in the defensive position of feeling like we have to validate our children rather than you believing and accepting it- and letting us move on to talk about other things. This is WHY I feel like I have to keep having these conversations with you. Because YOU will not educate yourselves. If you do not want to that is fine, but keep your ignorant responses to yourself and I will still love you anyway!

This also goes for my husbands PTSD. Because he APPEARED well or coped with a day of trying to overcome does NOT mean he is over his SEVERE war trauma. PTSD and Autism are managed very similarly. We are all doing our best to overcome. So if you see us all out together and doing well for a day please just be happy we got our whole family in sync for a day. These days are few and far between.