Discrimination, Based On Autism

In some ways, we have been fortunate as some neighbors invited Gracie to their kids Birthday Parties. We’ve had a few play dates with some of our neighbors. And while we are really glad for these things, they ultimately only served to give Gracie the illusion of “friends.”

My heart breaks in 10,000 pieces for this little girl who’s extremely extroverted and the only things she’s wanted since she was turning 2, was friends, friends, and more friends.

Over the last few years, despite having a neighborhood full of kids who’s parents shun Gracie for being different (because she’s Autistic), we’ve tried everything to develop some friends for Gracie. We’ve gone to play places, and made play dates, we’ve even tried to form an ongoing playgroup.

Thankfully, a friend formed an Autistic Playgroup, which we are so happy Gracie’s made a couple friends, for which we are eternally grateful. But why did it take Autistic’s to be “kind”?

Gracie makes fast friends, she’s super social…and so there’s nothing about Gracie’s abilities for friendships that’s in her way.

But wherever we go, whatever we do…there’s always that “difference,” that others use to shun sweet little Gracie. Whether it’s because she spins or flaps on occasion, or her cute literal-isms, who knows.

We’ve had doctors refuse to treat her Scarlet Fever (resulting in knee pain and increased struggles to walk as well as PANDAS) chalking up her medical symptoms to her Autism.

Gracie was kicked out of Community Education Ballet Class (for 2-3 year olds), this year early in class, in front of everyone….despite being one of the better behaved children, and being one of the only ones who could follow instructions, and then asked not to come back solely because she’s autistic.

And our neighborhood full of kids, girls, her age have been shunning her all along…because she’s different, aka, because she’s Autistic.

She faces it at school, and in services, and literally in EVERY aspect of her life.

Many parents struggle with how to deal with this, however, we’ve chosen to be honest and upfront about it. Oddly enough, it actually helps her to understand it. Never did I expect or anticipate that I’d have to tell a 2 year old that so and so wouldn’t let their kid play with you because you’re autistic, or when she clearly understood that she had behaved perfectly and the inherent unfairness of it all, a 3 year old, that the ballet teacher singled her out because she was Autistic…or how the world expects MORE from Autistics, and that Autistics just have to DO and BE way better than everyone else in order to have a chance at being included. But I really never expected that I’ve have to tell a 4 year old that her friends (the ones who had previously included her), weren’t coming to her party because their parents didn’t want their kids to hang out with her…because she’s Autistic. Especially after we’ve put off a birthday party for her for 2 years, and when we finally felt she had enough friends to invite agreed to let her have one….when Gracie planned who to invite, painted their invitations, put them in envelopes, took them to the post office and bought her stamps, put them on, gave them to the postal worker and asked her to please mail them; and the umpteen days since then that she’s been talking about it nonstop….and working daily to help make things for their take home bags. She’s DEVASTATED.

How do you tell your child that people suck…that they don’t mind destroying sweet little kids like her, JUST because she’s different???

Do they really think that if they ignore she exists, and that a child in their neighborhood is suffering, that she will just go away????

Do they think that their kids don’t SEE Gracie and desire to play with Gracie…or won’t ultimately find out how disgustingly discriminatory their parents are??? Kids get what adults don’t, their kids will get it…and that’s something you don’t live down easily. Like the next door neighbor’s grandkids who bang on the window for over half an hour begging to play with Gracie…to the point that their grandma got a puppy and named it Gracie hoping to get the kids to quit asking to play with the Autistic Child next door. The kids get the cold emptiness in their adults hearts.

Ultimately, we want to teach Gracie the 70’s value of inclusion….we want her to understand why we include all the children on the playground. It’s just unfortunate that she has to feel the pain of not-being included, to really get that. To me, it’s not an option…you include everyone, and you find a way to make it work. Those are the skills you need to develop (and hopefully develop as children) that you need to create a world that works for everyone.

Sometimes people mistakenly assume our lives are so easy, just because we don’t wear our pain on the outside and tend to focus on the positive. But it just crushes my soul that people, that grown adults, are so petty as to hurt a child by excluding them.



The Role Of Meaningful Work In Raising An Autistic Child (or Any Child)

Meaningful work is both an integral part of Montessori schools and preschools, but it is also a key fundamental trait in Waldorf schools and parenting.

Every person wants to know they matter, that what they do matters, and they want to contribute in some meaningful way to the people and world around them. It’s no different for children.

Also, children learn from imitation. What toddler doesn’t want to take mommy’s broom and sweep? Or “help” you fold the laundry.

Some might find toddlers constantly getting underfoot and needing to handle all mom’s (or dad’s) tools frustrating and time consuming, however, here’s where both Waldorf and Montessori excel for the young children, because rather than have it be the bane of the parent’s day….it becomes the focus. Giving children, child-sized tools so that they too can help out at the various tasks you have to do, and taking the time to let them (lovingly and supportingly) causes the child to feel a real sense of accomplishment, and that they matter, and that they can contribute in real ways.

It’s also helps fill a child’s “Love Bank” and need for attention in a positive way. Being successful at a task, fills the Love Bank quickly. When their Love Bank is full, they happily go off and play contented on their own.

Waldorf also uses meaningful work to help redirect the behavior of a child who may otherwise need getting after. By calling the child over to help you with something, this both stops the behavior from happening, but gives them something constructive to do, a chance to be successful….and to earn your positive attention (which they’d rather have than your negative attention).

In any event, meaningful work is considered to play a vital role in the success of these methods of child raising and schooling.

So how would that help Gracie, who’s autistic, and what role would it play in our raising her? When we began this journey, to be honest, we didn’t know. Many of the professionals around us acted like Gracie wouldn’t amount to anything and so we were never sure what she could do.

However, since Gracie rarely slept it was hard to get much done without her being right there and wanting to know all about it and help. The rest is history.

From the time I first handed her a screwdriver, Gracie loved helping me. Gracie took on a seriousness and a focus and determination…and she had such a sense of accomplishment and pride from being of use to me. And, of course, as grandma, I was beaming with pride and joy at watching her. To now, Gracie routinely helps me with whatever I’m doing. The other day, she helped fold the clothes and folded all the washcloths herself.

Today, mom tried to vacuum, the sound Gracie hates most in the world….but rather than run, Gracie asks to help out. I wish I could have got her joyful giggles in there.


I want to make clear, we aren’t making her do this, and she’s not compensated in any way for helping. Her joy at this is simply in being helpful. I often don’t think we give kids credit of how competent they can be.


Planning Gracie’s 4th Birthday…shhh…

I can’t tell you how many times I wish I could share with the people around me what I’m working on. Humans need to share, to have a back and forth with someone other than themselves, to get fresh ideas and just enliven themselves. But, as it were, I’m often in the background creating magic…and I dare not whisper to a soul what I’m working on, lest the magic be tarnished somehow and made less.

We’ve been using a Waldorf Approach to raising Gracie…to her home education, and in preparation for our hopes and dreams that she will be able one day to attend a Waldorf School. So when it came time to plan her Birthday (and we are always sort of planning it in the back of our minds), our greatest hope had been to be able to create a Waldorf Birthday for her. But, short of hiring people who understand Waldorf to help us, we have never quite been able to get it together to do one.

Since her 1st Birthday, it’s been about teaching Gracie about presents and opening them (which she mastered immediately), and just remembering what the day is about. For whatever reason, up until now, we just haven’t been able to get all the pieces together to put on an actual party with friends. No matter how many ways we’d envision it, there were always aspects that just made it impossible. Until now!

Just as soon as I gave up on all our dreams of a “just right” party for Gracie and went to book a venue that would be crappy, but a party…this amazing lady told me of another venue…one where we could have the “just right” perfect, low-key, Waldorf party celebration for her!

All the details are coming into place…I’m just sooo excited for Gracie!


The Healing Power Of Ponies…

When we began this journey with Gracie, she was a non-verbal, shutdown, unresponsive, and considered severely autistic. Her doctors were filled with sadness, and regretted to inform us that she likely wouldn’t amount to much, and probably would never live independently. They prescribed an intensive regime of therapies and services 40 hours a week.

Instead, we started taking her pony riding and thru the healing power of ponies, Gracie engaged. She was drawn powerfully to them.

Equine therapy is expensive, like really seriously expensive, so we just took her to a local riding stable for an affordable $25 per half hour. Plus, this allowed her to be on the horse the whole time…and for us to do the therapy. It was glorious. Each time she regressed, we were there and every time the pony would bring her back to us.

Soon, we were going often enough that it was cheaper to own a pony. Board around here is only $200 a month…so we began the search for a pony for her.

Fast forward, with the addition of a PANDAS diagnosis and Gracie getting continually loose ligamented, she needed greater support, and thus came pony number 2, Flower. Flower is 14hh, almost horse sized, and mom could sit behind her. He’s patient and calm…and slow. I had visions of them walking all over the ranch on him.

Now that she’s nearing 4 yrs old, Gracie is starting to be able to sit the horse herself. She acts totally uninterested in going to the ranch, totally uninterested in the horse…but boy throw her up there and there’s that smile that lets you know she’s in 7th Heaven.

In a boarding situation, I don’t know if he knows really what an important job he has…or how important he is to this little girl’s development…but he’s everything to us.


It’s That Wonderful Time Of The Year, Again…The Season Of Gift Giving!

Or…preparing for gift giving. The time of year of planning, list making, shopping, and most especially, making, in preparation for the holidays.

Each person has their own ideas about what constitutes the best gift for others. However, I invite you to consider that it isn’t about you. When so many are self-focused, meaning their attention is turned perpetually towards themselves (what they value, what they think is best, how they want to be seen)….it really takes a bit of doing (or rather, not-doing of self-orientation) to instead, turn ones attention to other/other than themselves….like, in this case, the other person, the actual receiver of the gift.

People will often complain, I don’t want to go to all this expense or effort just to have the other person go, “meh,” and cast it aside along with all the other junk they don’t need, use, or care about. I hear people giving experiences and gift cards to places that the receiver rarely uses. We all try for the gifts that make us feel good giving….but few think of the person receiving the gift.

It’s not easy to stop all the dialogue in your brain that creates this obsessive self interest, and get present to the other. To quiet the noise, and open to the other. What do they want? What do they like? How will they receive this?


The Actually Autistic Voice…Why Won’t They Listen?

Sooo many actually autistic groups post continually about their voices not being welcomed, or respected. I hear that. I’ve also been on my share of the receiving end of NeuroTypical (NT) Parents (of Autistic Children), telling me that because I function (better than their child), that I don’t get what their child is going through…so I get it. It can be frustrating, especially if you don’t have a lot of skills in this area of navigating human interaction.

When I was a child, social interactions didn’t come naturally for me, so I spent my whole life really, but especially my early childhood years, concertedly studying the art of human interaction in probably more detail than is healthy. You see, before I spoke, I was fluent (as all beings are) in silent language. Thru silent communication, we all know everything there is to know about each other…and then the people around me would talk in this out-loud language, and all those areas of knowing would shut off for them….it was deeply disturbing to me as a child, and so as I acquired out loud language, I worked extremely hard not to loose my connection and awareness of this, to essentially not-be waylaid by spoken words to missing what was really happening, like those around me were. I’ve also been living, successfully, in this world, as an autistic, interacting with a wide range of people, successfully for the most part, for a long 50 years. In short, I guess I’ve learned a few things about navigating human interactions along the way…that maybe can help here.

So in a situation when an NT Parent is struggling with their Autistic Child…realize that there’s no way for an NT person to truly understand their Autistic Child. This, in itself, is deeply hurtful, already. They get that they don’t understand, which is why they are online asking. And, really, that’s a good thing. So here’s a hurting person appealing for help and understanding. Additionally, women need validation…this sort of, ‘let me know I’m not alone in this,’ kind of thing. Knowing we are not alone, gives women strength to carry on. So you have a hurting person, appealing for help, understanding, and validation.

Autistic Adults are happy to jump in and help, which is also a good thing. However, all too often the conversation goes awry, and the NT Parent invariably says something to the effect of: ‘you’re high functioning, therefore you don’t understand what my child is going through.’

Sadly, when this happens, what many Autistics hear, when NT Parents say this, is due to a “functional label” you aren’t worthy to weigh in….and while they are shutting the Autistic down, this isn’t what I hear in this exchange.

Instead, what I hear them saying is: “I’m not feeling understood (yet),” in other words, they need some acknowledgement that you actually understand what they are struggling with, before being able to hear you. And truly, if we don’t really understand the problem they are facing, how well are we going to be able to help them?

People don’t read each other’s minds, so the only ways others can tell whether you understand, is if you say something that shows them you understand. That’s why I say, “acknowledge what they are experiencing,” it shows that you get it.

The key to this type of interaction, and really any interaction, is to simply acknowledge the person you are talking to:

1. Acknowledge how hard that is for them, acknowledge how frightening it must be for them; and

2. Then start from where THEY are, not from where you are; and

3. Then lead them step by step from where they are to where you are and to the point you want to make.

Unfortunately, however, many Autistic Advocates just come at it from a stance of: “this is where I am, and if you don’t instantly agree with me (without knowing how I got here), then you’re just wrong and bad,” without actually offering to educate the person or help the person to understand where you are coming from. Furthermore, this stance comes from a place of not realizing all that it took for them to reach the insights they are trying to share, or that others who haven’t made such a journey, wouldn’t have access to those insights.

It’s actually a bit of contention for me, because all the Autistics I know, and know about, have ever met, or ever crossed paths with….have a high degree of empathy, yet these Advocates seem to not have much, if any, ability to see the other person’s perspective. This is much more akin to narcissistic personality disorder (NPD), than to autism, as the realization of dual perspectives is second nature to autistics, and fairly absent in NPD….it just stands out to me, quite glaringly in fact, each and every time I interact with these Autism Advocates (along with the unearned sense of entitlement, the “you owe me”)….and I keep wondering, have we been unwittingly letting people with NPD destroy our Autistic Community??? But that’s another topic for another time.

What I will say, is that it is a wonderful “racket” to continually shut down NT Parents to the Autistic perspective, in order to continually claim that they won’t listen to you. People with NPD thrive on people feeling sorry for them…whereas Autistics have been working for years to help NT Parents.

Now I’m autistic, and whatever circles I walk in whether it be Waldorf, Homeschooling, Parenting….NT Parents can’t get enough of my insights and advice. So it isn’t a matter of NT Parents don’t want advice from Autistics, because they do…it’s that they are already hurting, and they don’t want to be attacked for asking for help…as Autism Advocates often go into a sort of warrior mode, “making everyone wrong,” and no doubt…some will make me wrong just for observing this aspect of interaction, where it’s going awry, and articulating it (again, an NPD trait, how dare you articulate something that casts me in a negative light or suggests I’m responsible for why it’s not working, but whatever).

I just don’t subscribe to that noise, or see it like that. I’ve been in parenting circles for over 30 years, and my experience just doesn’t match their constant-always-complaint….indeed, it’s been just the opposite. As I say, following these simple steps of getting present to what they are going through, acknowledging that (in other words, communicating to them that I understand), and starting with where they are…and helping them grow from there, I’ve had great success.

I’m a firm believer that if people can just see the playing field, that if it can be illuminated so all of its parts are visible, then people can not only see for themselves why it isn’t working, but can also readily see what will work.


Discipline, And The Autistic Child

Many parents feel at their wits end with their autistic littles, and invariably the most frequent questions that I see, and respond to, have to do with to discipline, or not to discipline, their autistic child….and since I’ve been doing this parenting thing for awhile, over 30 years, now….and because people tend to really like my responses regarding how we go about discipline in this family, I thought it might be useful to write about it in more detail. 

I’ve always felt my role as a parent, and as an educator, was in crafting the kind of life that naturally called my child into being.  In other words, my work was in the background of their lives, designing and creating an environment that from the time they got out of bed in the morning to the time they went to bed, the things that they naturally felt compelled to do, was what I wanted them to do.  

For example, if you had glass figurines you loved and cherished, you wouldn’t set them out in easy reach of a toddler who’s exploring his world.  That’s just a recipe for disaster.  

Instead, I create a compelling, age appropriate, safe, environment that is sooo compelling and powerfully draws a child into it naturally, so that when the child wakes and wanders out of bed…what the child is drawn to is what I wanted them to be drawn to.  

There’s quite an art to this, and I got my base in this from my first introduction to a Waldorf Kindergarten Room 30 years ago.  The parents sat on these little chairs underneath a large rainbow silk roof in the middle of the room.  All around were the natural toys Waldorf is known for, and the parents literally couldn’t stay in their seats…they were drawn so powerfully to go touch these toys, they couldn’t help themselves.  Something about that stuck with me…the fact that grown adults were pulled and drawn so powerfully as to break protocol and touch them.  

Granted, Waldorf is mindful down to every detail…from the dolls stuffed with wool, to absorb and radiate warmth back to the child, like a living being…to the fact that they arrange them in living scenes that invite you in.  

In any event, this becomes the foundational environment for the child. When a child has a proper environment, their behavior is naturally more appropriate. 

The next step in the matter of discipline, is understanding why children misbehave in the first place.  Children misbehave when they have unmet needs, it’s their way of trying to meet their needs.  So understanding the deep inner needs all children have then becomes an essential part of discipline.  

Of course, children need full bellies, adequate sleep, warm clothes….but they also need attention, your attention.  Interestingly, personality disorders arise from emotionally unavailable caregivers (or emotionally unconnected caregivers), which is important to note in this day of internet and Facebook and parents simply thinking it’s all about them and their lives, rather than about their child’s life.  Children need you to be authentically present and connect with and respond to them…to fill their “love bank.”  Indeed, it’s a depleted love bank and unfilled needs for your attention that is at the root of most misbehavior.  

I’ve often said, “a child will get their attention needs met one way or another,” the beauty is, as the parent you get to decide whether you preemptively fill their needs for positive attention (fill their love banks) or cause them to seek it in negative ways.  

The “love bank” concept came from a parenting book I read in the 80s that sadly, I’ve never remembered the name to.  It refers to  this idea of filling your child’s needs for love and attention fully so they can leave your side.  And how set backs through the day, deplete your child’s love bank.  If you ever find the name of this book, please send me a message and let me know…I’ve wanted to gift this to so many parents along the way.  

So we’ve covered creating a proper/safe environment that compellingly draws your child in, and filling your child’s love bank…this in itself should leave you with a mostly happy well behaved child, most of the time.  There will be times, say when other children come to play or the baby wants to play, that issues arise. So the next step in discipline that I like to talk about is “avenues of success.”  All people, not just children, have a deep seated need to be successful, to do meaningful things, to matter….children are no different.  However, this is often overlooked in childhood development, and it’s why methods like Waldorf and Montessori arose in the first place.  It’s also why doctors are prescribing play and less activities for kids, and studies re too much screen time, too much time sitting, and the negative effects of pushing academics so early are coming out….because we are so disconnected from what we truly need, we can’t hope to provide this for our children much less ourselves without being told and having clear guidance.  

So, how do we provide children avenues to succeed and ways to do meaningful things that matter?  One of the biggest beefs parents have is sort of this, how can I get my toddler to play by themselves while I sweep the floor or cook dinner?  Parents everywhere ask this type of question…but here again is a fundamental philosophical difference, as it isn’t a child (you) OR parent (me) world, but rather by virtue of choosing to keep and raise a child, you have chosen to put your life on hold and make this a child (you) AND parent (me) life.  So really, how can you sweep the floor AND include the child, AND have the child be successful???  

This is where Maria Montessori hit it perfectly.  What toddler doesn’t want to help you sweep the floor?  Children want to imitate you, that’s how they learn.  It’s highly recommended in both Montessori and Waldorf that you get a real, albeit child sized, broom for your toddlers…and let them help you, and authentically be appreciative.  Montessori has 2 year olds setting the table.  If you watch the kids go about this work, they are really serious about it…it fulfills a deep spiritual need within them to do meaningful work, to be of service, to matter.

So when children are playing together and things are starting to go astray, introduce some meaningful work…who will come help me peel these apples?  Now, rather than getting after them, or making them feel like failures, they are joyfully helping you in a task and being successful.

This is the gist of how I discipline my children…in our house, discipline is reserved for the discipline it takes to ride a bike, or play piano. 

Hope that helps.


It’s That Halloween Time Again

Gracie REALLY enjoys the holidays…and so, we do too. If for no other reason, than her pure joy is contagious.

However, the holidays are a time when her autism really shines through. From her advanced understanding of what they are all about; to her elephant like memory that lets her pick up where each holiday left off as though no time had passed; to just her shear joy at participating in something bigger than herself and her family, something that all the other kids are also participating in. She feels a part of, and for her, it’s glorious and magical.

Of all the holidays, Halloween has perhaps been one of the most fun to watch her progressions over the years. When she was one, trick or treating, all shy and not realizing what was expected to seeing she got candy in her bucket…this was the best activities of all in her eyes, and she’d shove her bucket in the neighbors direction expectantly.

The next year, at two, she remembered and knew, people give her candy and she sorted out how to say, “trick or treat.” She couldn’t wait for the big day and we’d have to go to the Halloween Super Store like every other day. She’d run through the store, stepping on all the display buttons to make these scary, gruesome, props come to life. We practiced trick or treating at home, mostly because she just couldn’t wait. Now she could walk on her own and, in her excitement, she walked way longer than we had expected.

Now, at three, again Gracie remembers it all, but her imagination has started to really flourish, so she really working through the concepts (oh so literally) of how bodies become skeletons, how zombies bite you and eat your brains…and we even had a really deep discussion on how our spirit inhabits our body, and when our body dies, our spirit may live on. I can’t wait to see what next year brings.

Another really cool part of her development is really emerging here…just like she’s very adverse to being a knight, or special…and how, duh, but of course, everyone just saves the unicorn…Gracie very strongly does not want to align herself with anything bad. So the concept of dressing up as a bat, or a witch is off the table for her…and instead, it will be something adorable and super cute….because why not?

In that spirit, of fostering Gracie’s blossoming imagination, and because I needed to sort out how to make the penny dolls (I think they are called pocket dolls these days), I made these cute trick or treaters for her.

Hope you are enjoying the lead up to Halloween.


To Our Fellow Autistics…

My granddaughter is autistic…but please don’t assume that the world appears inhospitable to her. Indeed, to her, the world is a glorious place that she’s eager to explore.

While my granddaughter is autistic…still, please don’t assume that people are hostile to her. Indeed, all whom encounter her find her the most amazing kid on the planet. In return, she loves people.

My granddaughter is autistic…however, please don’t assume that therapies and services are bad for her. She loved her therapists and saw them as her earliest friends.

To my fellow autistics, please just don’t assume anything.

My granddaughter loves life, she loves the things she can do, she’s contagiously happy most of the time.

She’s just living her life, taking pleasure in just being.


Autumn Means Autism Hell

While I LOVE autumn, the unbearable heat of summer has finally broken and cooler days, the humidity is down and the air is drier (I can finally breathe), and who doesn’t love the trees’ wonderful display of colors?!

But to my granddaughter, Gracie, autumn is a proverbial Hell for her. See, Gracie is autistic. Being autistic means she has more nerves and receives way more input from the world around her than other people do. Autumn for her, with the extra bright, bright sun…and the wind thru the drying leaves, that rattle, puts Gracie on “sensory overload” during most autumn days.

When Gracie was little, as much as she LOVED going outside…she couldn’t stay out more than a minute or two without either crying, or having a global shut down and becoming unresponsive. As well, in what time she could do outside, she was incapable of hearing us, understanding us, and was generally chaotic.

Autumn is also the time of year that we have to be extra aware, because in this chaos that her sensory overload creates, Gracie takes off at high speed…and she’s fast! They call this, “elopement,” and Gracie is definitely at high risk for elopement. With the news filling with stories of autistic children eloping and getting lost, only to be later found dead, so we take extra care with Gracie.

Last year we posted how far Gracie has come in her ability to tolerate being outside during autumn, with its additional sensory issues for her, so now it’s that time of year to post an update again of just how far she’s come.

This year, I’m soooo pleased with how far she’s come! But, Gracie, in her extremely high ability for empathy, gets to be afraid of getting lost…even if she doesn’t understand it. Historically, we’ve tethered her at places where she has a high risk for eloping…which she’s met with relief, and likes having her tether on (thank goodness), as it allows her to really enjoy what she’s doing and not have to worry about it. The last year or so, we haven’t been tethering her as much if at all. Last year, at the ranch she ran and ran and ran. This year, Gracie kept looking back, and what you don’t see, since I stopped filming to catch her…is she kept turning around to run back and get me, grabbing my hand to pull me with her. To me, that’s a HUGE accomplishment…and with another autistic child found dead, I’m extra grateful for Gracie’s good sense.

After our walk, Gracie went in the arena to run barrels…again, I saw that global sense of relief because she knew she could run and run and run AND be safe! And that’s what she did, she ran and ran and ran, she must have run 4 miles that afternoon while her mom tended the horses.

Days like this, I really feel like, Gracie’s going to be ok.