autism · Down syndrome

Seclusion and Restraint

Stop seclusion and restraint
Casey at age three

Casey was three and non-verbal. I had fought to get him into a preschool that was every day of the week, and for more time than the other special needs preschools in the area. I thought I had done right by him. By this time, I had three kids under the age of four, and was battling chronic pain. In the year that he was in that class, I had four surgeries and seen countless specialists all to no avail. I was overwhelmed and missed the signs.

Something wasn’t right. Casey is autistic and had always had a tough time with school. Transitions were tough. He screamed, cried, and melted down every day. We knew when we built his IEP.  In some of the forms I had signed while we were getting him settled into school was one for the use of restraint and seclusion in times where Casey was in danger of hurting himself or someone else. I asked them what they had meant, and they showed me a little chair that would slide up to a table that had a little buckle over the lap. I was okay with that. I knew I couldn’t expect the teachers to be one on one with him when they had four other children with autism to attend to.  I also knew that Casey could be explosive and I didn’t want him to harm another child or himself . I trusted that the teacher would only use these methods in the very rare even that nothing -and I mean NOTHING- else would work.  His behavior escalated at school and at home. As things got continually worse at home, I figured it was my fault.  I thought that he was picking up on my stress and my exhaustion. In pain every day, I couldn’t work with him the way he needed.

It wasn’t until the teacher of his preschool class went on maternity leave that I finally learned the truth about the situation. Casey wasn’t just being restrained by the chairs- that was benign compared to the seclusion.  One of the aids finally confessed that the teacher had been locking him in what amounted to a storage closet for extended periods of time during the day. The day I found out my heart crumbled into a million tiny little pieces. I still ache when I think about it.  There was very little recourse for the teacher. I had signed off on it. She wasn’t invited to come back after her maternity leave was over, and was thankfully replaced by one of the most amazing people I’ve ever met. But there was no discipline. She didn’t lose her teaching license. She could very well be teaching students right now.

Teachers like these are the exception to the Special Education standard. Most teachers are amazing. But not all. Some are overwhelmed. Some are under-trained and some schools are significantly understaffed. Some should have never became teachers to begin with and aren’t fit to serve the most vulnerable students.

When we had Abby, the thought occurred to me that we were again facing a situation where my child wouldn’t be able to tell us what happened at school. Where if we did get one of the teachers that suck,  we wouldn’t know it until it was too late. Until damage was done.  That’s why last summer, along with the National Down Syndrome Congress, I pounded down the doors of my congresspeople in Washington DC, with these facts (Some have been updated to reflect changes that have been made on individual state levels over the past year):

  • There is no one federal law that covers all students, instead, a ” patchwork of state laws, regulations, nonbinding guidelines, and even utter silence.” (Jennifer Butler, How Safe is the Schoolhouse)
  • The use of restraint in schools has been attributed to the deaths of at least 20 students.  Restraint is dangerous. The practice of restraint should be limited to only when there is a physical danger to students, and even then only after all other methods have been exhausted and only by someone trained in such techniques. Currently, only 18 states have laws that limit restraint to this in children with special needs, 13 for all children. Even worse, only 27 states have laws against using positions where breathing is compromised for people with disabilities, 20 for all children.
  • Only one state bans the use of all seclusion for all children, 4 ban it for children with special needs specifically. Children locked in closets, bathrooms and other places (like the storage room Casey was locked inside) are frequently left there, unobserved, for long periods of time.  Instances of children being killed, injured or traumatized have been reported.  Lots of times, children are left in seclusion until unreasonable demands are met. In Casey’s case, he was left in there and told to “calm down.” He didn’t understand those words nor did he have the ability to self soothe or calm down on his own when his needs weren’t being met and definitely not in a place that was frightening to him.
  • Only 20 states have laws requiring that parents be notified of the use of restraints or seclusion. So, if you’re not in one of those 20 states, this could go on without you even knowing.

Obviously, this is wrong. It’s wrong that most or our schools don’t have the same criteria for seclusion and restraints that hospitals and prisons have. When I asked my senators and representatives why they wouldn’t co-sponsor the bill, one of them said that the teacher’s unions didn’t want any more rules. This was after the bill was downgraded to a mandate- meaning it wouldn’t even be enforceable! States are working to enact regulations, and while some come close or even exceed the standard set out in a bill being introduced in the House, most are far from it. Some states have regulations and guidelines that aren’t binding, and then don’t go far enough to make sure that rules are being met. Fortunately all is not lost, a new bill has been introduced and it needs your support. Things have to change for our kids. There are things you can do now to protect your own child in their own school, and there are things you can do to affect change for all students.

So what can you do?

First, make sure your own children are protected. While we wait for laws to catch up to common sense, take the necessary steps to ensuring that your child is safe at school. Find out the laws in your state. If they don’t go far enough to protect your child, write provisions into their IEP. Written in Casey’s IEP is that the use of seclusion and restraints is never allowed. This wasn’t a hard thing to ask because the school doesn’t allow for it anyways. That being said, not all schools are like the one we are attending, and you need to know what behavioral plan is in place for your child.  Follow up. If you think there might be a problem at school, go with your gut. Make sure you have a relationship with the teachers and paraeducators.

Sadly, in some cases, even this isn’t enough. In the past week three personal friends have had to fight the schools over abuse, and improper restraint and seclusion. This is why there needs to be federal laws that would help instances like these to not happen, and if they did, for teachers and schools to feel the full weight of the law.

Second, make sure ALL children are protected. These laws need to cover all children, both disabled and non disabled.

Please CALL your members of Congress and ask them to Cosponsor and Support the Keeping All Students Safe Act, HR 1893. 

Dial 202-224-3121; ask for your Representative’s Office, and then ask for the education aide.
The keeping all Students Safe Act will:

The Keeping Students Safe Act will:

  • ban restraint/seclusion except in emergencies where someone is in danger of physical harm
  • require that parents be informed if their child was restrained/secluded on the same day that the event occurred
  • ban restraints that impede breathing, mechanical restraints, and chemical restraints
  • prevent restraint/seclusion from being used when less restrictive alternatives, like positive supports and de-escalation, would eliminate any danger 
  • require that if children are placed in seclusion rooms, school staff must continuously visually observe them
  • ban dangerous aversive practices that threaten safety; require the collection of data; and require appropriate training of staff

For more information please visit:
Be sure to read:, which is where most of the figures in this post are found.

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Keep All Students Safe Act
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The Autism Thread

I thought about going into detail about how I felt when I heard the news about the shootings in Newtown, Connecticut. I don’t think that’s necessary, as I’m sure this is very much a shared experience among anyone who has heard of horrors of that cold Friday morning.  This pain isn’t something I could adequately describe in words anyways. It’s too much to even think about.

As word spread, the autism thread was being woven into the story. It was too eagerly jumped upon by overzealous news stations, and then passed around as the nation collectively grappled with the question as to why this would ever, ever happen. They said the shooter had autism.  Too soon some would be led to believe that his autism was the cause here.

Autism is an easy target. Too many people still hold fast to the stereotype of a person with autism being socially withdrawn, without empathy, and with a tendency towards violence.  My son is autistic. To a person looking in, they might only see the traits listed above. They’d be missing this amazing 9 year old boy who loves without reservation, forgives readily, and feels more empathy than most kids his age.

As the news of the shooters autism broke, I thought about my son. I thought about the millions of families who were sitting down with their children, attempting to tell them what happened.

Would parents tell their kids that the guy who did it had autism? What would that mean for my son? Would parents jump to false conclusions that my own son is dangerous?

His autism is not a secret. At the beginning of the school year,  I went and spoke with his class about it. I told them in an attempt to increase understanding and compassion for my son on days that he’s having a hard time. I also really wanted them to see that Casey’s autism isn’t a bad thing. That he is the amazing kid he’s become because of it. I worried that doing so was now a horrible mistake. If these kids knew the connection, would they be afraid of Casey? Would they not play with him at recess or sit by him at lunch?

My amazing son shares the same diagnosis as a person who is beyond words that I can use to explain. This person’s autism did not cause him to do what he did. Autism is not linked to planned violence. In searching for answers to this unspeakable crime, I hope people are a little more careful what they blame. In using autism as an excuse, it hurts my son. It only causes parents to be less trusting, and their kids to be afraid of my son. My son needs and deserves to be loved not in spite or because of his autism. Just because every kid needs love.

And right now, the only thing I can see that will help is more love.

autism · blogging · Down syndrome


U.S. District Court for the Middle District of Tennessee/Holland Family
U.S. District Court for the Middle District of Tennessee/Holland Family

Having a child with disabilities really shows you how great people can be. Unfortunately though (but thankfully far less often), you get to deal with truly horrific individuals. There are people out there who simply have no conscience. They are out to get a laugh and don’t care who they hurt.

Case in point:,  To summarize,  Adam, who has Down syndrome took a class at Vanderbilt University, where this photo was taken of some artwork that he did and was obviously proud of. A radio station somehow obtained that image, and photoshopped it to say “Retarded News” where the drawing once was.

Can you imagine the pain the family felt when they saw their son being used in such a derogatory manner? I would have sued the hell out of whoever owns the radio station- and they are. I hope they win.

With this as a backdrop, someone alerted me to the fact that again, Abby’s pictures are being stolen and used on websites that have no right. Here’s the tricky thing. I don’t mind people “sharing” her picture from my facebook page. The “share” button makes it so that when people see the image and comment on it, it comes back to the original imagine on my site. It gives me some feeling of control. I can see where it has been shared, and I can see if people start saying nasty things on it.   What some pages do, and it’s really quite brilliant and terribly sneaky all at once is instead of “sharing” the pictures, they download them and re-upload them to their own pages. They do this so that when they are shared from their own pages, the shares and likes come back to them, and not to the owner of the page. Sometimes they’ll give the copyright holder a shoutout, but it’s not the same as “sharing” the work.

These pages know exactly what they are doing. They are not doing this by mistake. If they were, you think they’d apologize and just take the picture down. But they don’t! Instead, they delete all of your comments and the comments of anyone else who state that the image is stolen. Then they ban you or anyone who commented. They have to keep those pictures up as long as they can because the longer they’re up, the more traffic they drive back to their own page. This is why these shady pages have huge numbers of people who “like” their page.  The easiest thing for any person or page to do is simply click “share” rather than going through the trouble of downloading then re-uploading the image.  The following pages are among the worst offenders. They have not only stolen pictures of Abby, but of Casey and artwork that I made for this blog:

If these sites are really out to promote autism and Down syndrome awareness, why not “share” the pictures from the site they originated from? Why not work to share the stories of other members of the community? Instead, they take the pictures and the credit that goes along with them. It’s unethical at very least, and worst, it’s shifty and illegal.

And it puts pictures out of control of the owners. These pictures get stolen and used by trolls who are vicious in their need to tear down people with disabilities. The three sites above have shared a bunch of my stuff. Combined, the shares amount over 10,000 from their respective sites. I’ve lost control. And honestly, it makes me want to shut it all down right now.

I started writing this blog as catharsis dealing with a very unique family situation. It’s helped me work through so many things. A side effect of that is that I feel like I’ve helped people see disability a little different. I hope that I have helped other mothers to not feel so alone through this journey. I hope that I’ve done some good. This blog has helped me find my own voice. But I wonder if it’s worth the cost. I shudder at the thought of running across a picture of Abby used for something as terrible as the story above. Last night as I saw things getting out of hand, I was ready to just shut it all down. I took down all of the pictures of my kids off my facebook page, and I’m wondering if I should do it  here, too. A number of you have mentioned to watermark the photos- which I need to get in the habit of doing again, but that doesn’t stop people from sharing the photos as their own, and people rarely search out the photo’s true owner by the watermark. It’s just a sad fact of Facebook.

It makes me so sad. I think my daughter is so beautiful. I want the readers here to see how beautiful she is. I want them to read about her life and how she’s changing me, and how she will change the world.  I know, honestly, that if I keep putting pictures of her up, I need to just make peace with the fact that this is going to keep happening. The more this blog grows, the more visible we become. I hadn’t thought this through.

I don’t know what to do. I feel so defeated.


If you’d like to help me out and report the pages, that would be great. If nothing else, make sure you don’t “like” them or share the work they’ve stolen. If you are a blogger or if pictures of your children are in a public arena, you might want to check these sites and others to make sure your work hasn’t’ been stolen, too.


Owning it.

Owning his autism.

Last Sunday we went to the Imagine Walk for Autism. We told Casey beforehand that this was a day that celebrated autism, and that raised money for programs for people in the area who have autism. Of course, Casey immediately assumed that the day was FOR him.

And we didn’t tell him otherwise.

When we got there, the picture above is how the day went. He had to stow his Chewbacca Angry Bird in his shirt so he could walk around with arms in the air, yelling, “I HAVE AUTISM!” He stopped random people as we walked by and said, “Hi, I’m the guy with autism!” and then hugged them. I may have cried a little. Other people may have cried. It was truly joyful.

Casey knows he’s different. He started picking up on it a couple of years ago. It was hard for me. I didn’t want him to be different, and I definitely did not want him to know that he was. I wrote about it here. That post was a turning point for me. I was wrong. He is different.  If I couldn’t model acceptance and even how to EMBRACE autism for Casey, how would he ever accept himself? If his own mother hated the autism which made him who he is…how would he ever learn to love that part of him? Fortunately, I had wonderful friends who I met through this blog- some even through that post- that have walked me through this process. They gently guided me, never judging me, to a place of true acceptance and peace with Casey’s autism. To see what autism GIVES him, and not just what I felt it took.

When Abby was born, I really wanted to feel like she wasn’t different, I still wasn’t to the point of acceptance and understanding with Casey, so I lived in denial for a time with Abby, too.  For that time, it didn’t seem like she was all that different from my other babies.  She turns three next month, and that feeling has largely passed. She is different. Everything is different with her. The way she walks, the way she talks, the way she learns, the way she fights, the way she lives.

Eventually, Abby will know she’s not the same as everyone else.  People will see her Down syndrome before they see HER, and acknowledging that isn’t wrong, or sad, or anything. It’s just the truth. Being different isn’t wrong. Being different doesn’t mean she’s less. And, in a world where we are all fighting for our own sense of individuality, being different is GOOD. I just hope that she’ll accept herself and meet these people with the same enthusiasm about who she is as Casey did at the Imagine Walk. I can’t wait to see her, hands in the air, yelling “I have Down syndrome!”

Different not less, and down right beautiful

Saying our children aren’t different doesn’t make them any less different. And denying them the opportunity to embrace it, to own it, doesn’t do them any good either. We don’t need to tell the world that our kids aren’t different. We need to tell the world that differences are good.

In the immortal words of Dr. Suess: Why fit in, when you were born to stand out?

Why fit in when you were born to stand out? Dr. Seuss



The Stars.

Autism can be overwhelming in the most amazing ways. It’s not always terrible, it’s not always amazing and sometimes even, it’s both all at once. A night sky full of stars.

Last night Casey came home to find that Abby had accidentally erased the Angry Birds Star Wars ap off of our Ipad, losing all of information saved there. Every level he had passed had been lost along with every award he’d received. He freaked out and I didn’t blame him. Lance and I took turns trying to calm him, but really, when it gets to that point, we are only there to keep him safe. We don’t stop him from screaming and from letting the emotions out. We do try to help talk him back, to empathize with the loss and anger he was feeling, and to tell him we’re sorry. These storms never take a predictable path. I never know what will work to help him find peace. Yesterday it went from him hugging me tight and shaking as he cried to him screaming and biting the pillow and saying over and over again, “I just want to have control over all of the babies!”

Forty-five minutes into it,  Lance came in, a feverish Abby in his arms. As he went to lay her next to Casey in bed with us, I protested. “Not a good plan, Lance, he’s really upset with her.” Lance, without saying anything just knowingly smiled and put Abby down on the bed.  Abby, snotty and sick, gently cuddled up next to Casey, resting her head on his shoulder. Within a minute, the anger that had filled the room was gone, within five, my two beautiful children were asleep, cuddled close together and breathing in time.


This morning was the mess of madness that accompanies getting my kids out the door to the bus. I had made the mistake of getting in the shower before I got the kids out the door and it threw off my groove. The kids were screaming by the time I was out so I threw on some pajama bottoms and a top as fast as I could and got back to the business of getting my kids out the door.  As Casey ran out the door, Peyton yelled, “Where’s your backpack, dude?” I turned around to find the entire contents of Casey’s backpack on the floor…but no backpack. I had JUST packed that thing! I ran through the whole house and could not find it. Finally, I shoved his notebooks and folder into another backpack and sent him out the door.

Yeah, big mistake. Casey took to throwing the backpack up against trees and slamming it over and over on the ground in a fit of “This isn’t my backpack, this isn’t my routine, this isn’t how I had planned this day to go!” I yelled at him from the door to come back, that we’d fix it. Instead, he took off for the bus. I continued to yell as I ran out the door after him. I ran up the street in my pajamas; shoeless, braless, my hair in a half dried mess, begging him to come back. I ran past my neighbors, out with their dogs, or sitting in their cars at the bus stop and straight onto the bus. The sweet bus driver was doing his best to calm Casey down. As I walked up the stairs the first thing I noticed, and it’s an image I will never forget, is the scared look on the faces of the children as they watched Casey scream and yell. They were afraid of him.

Except one.

Our sweet little neighbor, who is in Casey’s class. Who GETS Casey and loves him for him. While the other kids stared in fear, she sat next to him and tried to calm him. My heart almost fell out of my chest with love for that little girl. Casey would not be calmed, so I got him off the bus, dragged him past the neighbors as they nodded at me in silent support, dragged him down the road and back into our home. I was relieved to find Abby waiting for us at the door, her pajamas half taken off and her hair a crusty snotty mess.

Usually, if Casey doesn’t get on the bus, his routine is too upset and he can’t make it through the school day. I still wanted to try, wanted to hope that his day would not be lost to this upset. I grabbed Casey a can of Diet Dr. Pepper to sip on (it calms him) while I got ready to take him to school.  I found his backpack on the floor of my bathroom (not sure why he took it up there…) and reloaded it.

We got to school and I could tell Casey was off. He was still battling the rage he had felt minutes before.  His breath was still a little shaky from the sobs. Abby in tow, I walked with him slowly up to his school, where his amazing principal met us. She’s out there every morning to greet the children. As we came up, she knew immediately things were not good. She knows that Casey has to ride the bus. I hugged Casey and said, “Are you going to have a great day today?” He did not answer. The principal did not miss a beat, she THREW her arms around Casey and said, “I am going to have THE BEST DAY because you’re here Casey! Let me walk you to class.” And with aAutism Stars sly smile, Casey took her hand and they walked away.

Autism can make the world seem so dark at times. It’s in those times, though, that the stars shine their brightest. The shining moments where anger melts away because of the sweetness of a 2 year old, where a friend is not afraid to be TRUE friend even when it’s hard, and where a principal takes the opportunity to change a boys day completely with one simple sentence.

They are the stars.


autism · Down syndrome · funny · Me

I’m THAT Mom!

I'm that mom, just a regular day in our house

Today, by 11am, I had already put my head against my husband’s chest and whimpered, “I’m THAT Mom, Lance! I’m thhhhaaaaaaaat Mom.”

Yup. I’m the mom that schedules her son’s neurodevelopmental (it’s really a thing. Not a fun thing. But a thing)  appointment at the same time as her daughter’s first “Rhythm, Movement, Dance and Song” group.  Except, I didn’t actually know that was the name of the group or where it was exactly. And, apparently, I didn’t know what time it even started.

I’m that mom.

I woke early and desperately tried to get Casey to get ready. He laid naked on the ground for a full ten minutes playing with the cords to the blinds with his toes and harassing Peyton before I started just putting his clothes on for him. As soon as I started, he realized that he was no longer grounded from the Ipad (we’ve had to implement grounding for headlocks, no matter how light hearted they might seem), and took off to find it.  This, while the other boys were hounding me for “sports apparel” (THEIR WORDS, even) for a spirit day at school. “Are you kidding me guys? ALL OF YOUR CLOTHES ARE SPORTS CLOTHES!”  I finally tackled Casey down on the stairs and got him to cover up his privates.  Another ten minutes of him not looking for the Ipad as I chased him around with the rest of his clothes later, he was ready to go. Lance came down to a scene where Abby is crying because she now thinks it’s cool to force me to feed her (aint nobody got time for that!), and I wasn’t and Carter and Peyton are BOTH screaming at each other about the computer because one of them wasn’t stuck breathless in the clamps of a headlock. I might rethink that policy. It brings the noise level WAY down. Casey was bemoaning the fact that I wouldn’t let him take all eight of his Angry Birds to the appointment.   Lance tried to sneak up on me as I was angrily slapping peanut butter on bread and in his tiniest, most scared voice said, “Hey…how’s it going?…” then quickly backed away to avoid getting singed when I breathed fire.

No sooner had I gotten Lance and Casey in the car to go to the Children’s Hospital did Lance call me with, “Uhhhhhhhhhmmm, so…..where am I going?”

I finished getting the other boys their sports clothes for spirit whatever and sat down to get Abby to feed herself while I scrolled through my email. Peyton yells to me “Hey, can I get back on the computer? I’m asking because I don’t want you to be cranky with me. You’ve been very cranky this morning.”  Ouch. There is a time in every mom’s life when she realizes that her child is right and needs to reevaluate her methods. If I had only been better prepared no one would have gotten yelled at this morning. Things could have gone so much smoother. Realizing this, I pulled Peyton into a warm embrace and apologized to him for my actions earlier and committed to be the kind of mother that doesn’t ever have to yell.

Just kidding. I did nothing of the sort. I’m not THAT Mom. I said, “You’re right Peyton, come closer so I can punch you in the skull.”  For a minute, all was silent as we all pecked away at our various devices. Scary Mommy’s book dropped today. I love her and had to shout it to the world…on Facebook. While there, I totally forgot about the TIME and my boys almost missed the bus.

I’m that mom.

I’m not sure any of my boys had breakfast. I just realized that.

As soon as they were off, I ran upstairs to get myself ready for Abby’s toddler group. Realizing that I didn’t have the *time (*read: desire) to shower, I hastily washed my bangs (I’m a genius!) and pulled my hair into a ponytail. I ran downstairs to do the same with Abby’s hair as she sat looking at her bowl of cereal nobody was feeding her. She’s such a freaking princess. She also really hates having her head touched now. I go two ugly pigtails done and threw on her clothes. Realizing I can’t find ANY socks for me, I throw on the first two I grabbed out of our mismatched sock bin and RAN out of the door (just as Jill Smokler on the TV I forgot to turn off says on the Today Show, “we have contributors on Scary Mommy” and I’m all THAT’S ME! I’M FAMOUS! She mentioned ME! because I am, as you well know, a crazy person).

We get to the university and as I’m running into the building I see another mom running in with her daughter, too. I say, “Are you going to the group here? Do you know what group it is? I don’t even know where the hell I’m going.” And she says, “Yeaaaah, today is the last day of our signing group…I don’t think that’s the one you’re going to…” So I, late now, run up to the Early Intervention office and to a very surprised  group of therapists and parents I breathlessly say, “Am I in the right place?” Abby’s seemingly always-nervous case worker comes out of her office. I put Abby down and put both hands on my knees as I pant. Two flights of stairs. I’m as out of shape as I look. I stand up straight and without realizing that there’s a small hoard of cute little kids with a variety of disabilities in the room I all too loudly say, “I swear to you, I’m losing my SHIT.”  gasp.

Yeah, I’m that mom.

She takes me down to the music room where I’m relieved to find that I’m not late…in fact, we’re the only ones there besides the music teacher. Man! Am I glad that I didn’t blow this off! She would have had no one come! I introduce myself and fall in love with the very artsy lady that runs the group. She’s very direct. “Oh, I thought you were in our 10:30 group.”

I totally was!  So now I wasn’t ten minutes late, but an hour and twenty minutes early. Fortunately she took pity on me and let us stay for her 9:30 class, that soon filled with moms and cute little toddlers. The class is a community class that we get to go to for fee because of Abby’s diagnosis. We’re so lucky, huh? The rest of those suckers have to PAY.  The moms in the class were super cool, too. And guess what, NOT A SINGLE ONE OF THEM WAS WEARING PANTS. I mean, we weren’t naked, but we all were wearing sweats or yoga pants. My tribe.

I'm that mom. My poor kids
You can tell that this isn’t from today because I actually have makeup on.

I noticed all of them were taking off their shoes. And their kids shoes. It was a shoe free class. I…I had gotten my socks from the missing sock bin. They not only didn’t match, one was my son’s and one was mine. One was pink, one was stained and had grey toes and heels and “PEYTON” written on it. I couldn’t go barefoot either though, because it’s not summer yet and I have not yet taken the time to shave the hair off my toes.  There is much hair.

A “Rhythm, Music, Dance and Song” group is just amazing amounts of silly with a toddler that doesn’t hear well and a mom that has no rhythm and is totally tone deaf. Add to it that the room was warm and we were moving A LOT. I was already a sweaty mess from running up and down the stairs (I kid you not) and having to meet new people (the social anxiety disorder makes me sweat…which makes me or anxious…which makes me sweat more…which makes me want to not meet new people ever because I become a gross filter-free sweat monster). I couldn’t take off my sweater because I didn’t want to be the smelly kid in class. Not that I actually would have smelled, they just would have thought that given the massive pit stains on my favorite grey shirt. (Why do I wear grey? That’s the dumbest thing ever)

I am the mom with ugly hair toes, mismatching socks, and pit stains. But my bangs were clean!

Casey’s appointment finished, and they met me at Casey’s school. I had forgotten to send the paperwork with Lance to the appointment, so now I would have to have the school fax it over. Because I’m that mom.  Casey actually WENT TO SCHOOL (this is huge…he usually can’t go back if we’ve messed up his schedule at all…but I think going with Dad made it okay so now Lance is going to take him to all of his appointments he ever has). I take Casey to where his class and three others are practicing for their jazz concert. I walk up to his teacher and principal who are talking together just to make sure they know to call me if Casey decided that he couldn’t handle the upset. As I was talking to his super cute and fantastic teacher, Casey reached up and ran his hand over the sparkles on her sports shirt…right over her chest…oh goodness.

Having already said a four letter word in front of a group of children once already that morning, I decided to hightail it out of there. Which is where we began. Me burying my face in my husband’s chest as I said, “I’m THAT mom.”  He patted my back and said, “Nah. You’re great. Also, Abby squished the Rice Krispy Treat you gave her in her hair.”

Of course she did. And of course, instead of going home to clean it out, we went out for lunch. Because I’m that mom.





Don’t ignore him.

The other day, Casey said something that jolted my insides. He was frustrated by his inability to connect with some of Carter’s friends. I believed it was more Younger Brother Syndrome than his autism. He was venting about that and about school. Finally, exasperated at trying to tell me what was bothering him, he put his head down and mumbled, “They ignore me.”

Oh my heart. I hadn’t even thought about it. I hadn’t even made the connection to all of the many terrible times I had said to Carter or Peyton, “He’s having a tough time, just ignore him,” as Casey raged and said things he didn’t mean. I had taught my kids to ignore their autistic brother.

Then I imagined all of the times well meaning teachers had probably said the same thing about Casey at school when he was having a tough time or stimming. “Just ignore him.” The kids learned to not stare at Casey when he was freaking out, but in so doing, they also, simply, learned to ignore him. To tune out his noises, his stories, his joys…him.

Casey is not always ignored, of course. We have wonderful neighbors and he has an amazing team of teachers and the kids in his class are great. Kids are born wanting to be helpful. They are innately accepting. It isn’t until they are taught, whether we mean to or not, to not be accepting. It happens accidentally in times where we are well meaning.

I never wanted my kids or the kids around Casey to be afraid of him. I never wanted them to think that he means the things he says when he’s mad or that he’s weird because of the things he does to self soothe or because of his intense interest in a couple of subjects.

What it comes down to, is that Casey is an amazing kid. His autism is apart of who he is and will forever be. If I’m going to ask that people accept him, it means all of him. To not just ignore the parts that are different. To understand that when he’s upset, he doesn’t mean what he says and he’s working on it. That stimming serves a purpose and shouldn’t be discouraged and it’s not wrong to watch or even join in with him. Sometimes, it’s terribly fun.

Just, please, don’t ignore him.

Why teaching kids to ignore behaviors doesn't help in the long run
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autism · Uncategorized

Why it’s okay for parents of autistic children to not be okay…

I have little tolerance for first-time moms who feel it’s their need to tell me how to parent my four kids. Your baby is a month old! Don’t tell me how to parent my 10-year old.

To be honest though, I was that first-time mom. I thought that my background in psychology and child development gave me enough knowledge to be able to talk about kids – and as soon as the umbilical chord was cut on my first child, I thought I had the RIGHT (even the responsibility) to say the things I knew.


What’s worse? People who don’t have children telling me how to feel about what happens to my kid. Over and over again in blog posts, some even directed at me personally, I am told that I am a bigot for saying that “autism is hard.”  They tell me that I don’t accept my son for who he is because I had a time of grief after his diagnosis, and that I hurt when his autism causes him heartache. They tell me that I am being “selfish,” that I am grieving my false expectations, or the “perfect child” I didn’t have. They say, “no, it has nothing to do with his autism. It’s you.” That I need to “get over it” because it’s harmful to my child.

Their advice? Parents should be able to get their child diagnosed and just move on. There is no need for grief; all we need to change is our attitude. Acceptance means that we have to be okay with our child’s autism from the get-go.

There are many things I can agree with. I do not hate autism. I see Casey’s autism as an integral part of who he is. I see the many unique abilities that it adds to who he is. I love him for who he is – not because of nor in spite of his autism. I love him because he’s my son and just a fantastic kid. I also want other people to love him for who he is, autism and all.  I want him to grow up to be proud of himself, to accept himself.

In a way, they’re right, part of the grief I had at Casey’s diagnosis was over What Could Have Been. Yes, I was sad because I had mapped out a life for him that had all but gone out the window.

When Casey was diagnosed, they couldn’t tell me if he’d ever talk, potty-train, or read. I was crushed. I am a mother. I want all of my children to have happy, wonderful lives. Back then, I had a different view of what success was, and even of what happiness in this life meant. My view on all of that has shifted radically. I believe now that what matters most is that my children are happy and are doing their best in this life.

But it was a journey. A journey that each parent who has a child with special needs must travel. To tell a parent that what they are feeling is wrong doesn’t do anyone any good. I don’t care if you have the same diagnosis as the child. Until you’re a parent and go through it yourself, you just can’t understand.

Sure, these bloggers get along well. I see how they articulate their ideas in their posts and their hateful emails to me. Some have gone to college, have found someone to love, etc. That doesn’t mean that that’s the only future.  And even if it is, it doesn’t mean that I can’t hurt a little when I visit my son at school to find him eating alone. That I can’t be sad when he’s sad. That I can’t also feel anguish that he feels when he’s in the throes of a tantrum he can’t climb out of. I feel this not because I hate his autism, I don’t; I feel this because I am his mother.

Invalidating the feelings and the journey of parents does nothing to help children with autism. It only creates more distance between the parents of autistic children and autistic adults. We need the wisdom and the perception of autistic adults. We learn so much from them. We need their perspective on what our children see and feel. What we don’t need is to be told how we should feel by people who haven’t walked a mile in our shoes. That the feelings we have are wrong.  They are not wrong.

I have moved to a place of acceptance with Casey’s autism. My journey to get there helps me empathize with parents of the newly diagnosed. Again, this is an empathy that some of these autistic adults don’t quite understand – not because they’re autistic, but because they haven’t traveled this journey as a parent.

I am in no way saying that every autistic adult says these things or even feels this way, it’s really a very vocal minority, but I have found that autistic adults who have children are kinder and way more understanding of my emotional journey. They get both sides: that autism can be an asset, but also that we don’t want our kids to have a tougher time in this life than is necessary. I think that comes with parenting ANY child, not just autistic ones.

When I was a first-time mom, I thought that I had it all figured out. I thought that my experience with nieces and nephews, with babysitting and all of the books I read and courses had taken had prepared me for parenthood. While it was helpful to have that knowledge, it did nothing to prepare me for what I would FEEL. Feeling is good. Feeling is necessary. What we feel as parents helps us think more of our children. It moves us to do more for our children. It forces us to step outside our comfort zone and advocate for the needs of our children.

I am not sorry for the feelings I had after Casey was diagnosed, and they are absolutely no reflection on how I feel about HIM. It was okay to not be okay for a while…and even from time to time now.


Autism parent bloggers
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autism · Down syndrome


I wore the thickest pair of rose colored glasses after Abby was born. It wasn’t wrong, and I think to a large extent it was my own naivete and denial. I patted my own back as I said, “Well, I’ve done special needs before with Casey’s autism, I can do it again. I got this!”

But “again” was the wrong word, and as I’ve spent a few more years doing this special needs thing with yet another child, the more appropriate word…the word that carries the real weight of what we’re dealing with is: “too.”

I figured I that I would be okay because I knew my way through Early Intervention. I am well versed in IFSPs and IEPs and all of the other acronyms. I had already had been schooled by life in special needs. But I hadn’t been in Down syndrome. And definitely not in having one with autism and one with Down syndrome, too. I saw the two disabilities as separate from each other. I didn’t think much about doing them at the same time. I didn’t see that they would be added to all of the “regular family” issues we deal with our two neurotypical kids.

Day to day, there seem to be a million little issues. The big issues come, and are mostly related to Abby’s health, but basically, what we are dealing with are small things. Too many small things. Today Abby had her post- op appointment with her ENT. We then scheduled an appointment for another swallow study, sleep study, and another appointment with him before we schedule the surgery to fix her laryngeal cleft. He said he’d work on moving her hearing aid fitting up with the lady who did her ABR and let me know. Tomorrow I have to call and get ophthalmology appointments for Casey (he’s starting to have a little bit of a lazy eye) and Abby.  I will make a call to get her in to see an orthopedist because it looks as though she has hip dysplasia, along with the issues she has with  her feet and ankles.  Her immunology appointment is next week, and Casey’s appointment with the Developmental Behaviorist is the week after that.  All four kids have dentist appointments and their yearly physicals in the next few weeks, too.

It’s a lot of appointments. It’s a lot of little freakouts by Casey at home. It’s a lot of frustration by Abby because she can’t always tell us what she wants. It’s a lot of Yo Gabba Gabba turned on too loud so that Abby can hear it.

And, quite honestly, it’s a lot of random pangs of sadness for me. I’m not a sad person and my kids aren’t to be pitied. They are happy and are going to have great lives. There just are times where I’m sad that it’s not the lives I had planned for them. Where I have to deal with what could have been and what is. The tears that came out of nowhere when I was in Toys R Us and realized that no matter how many baby dolls we buy Abby, she’ll never be a mother. The pain I feel when I visit the school and find Casey eating lunch alone. The weight I carry that I’m not quite sure how to take off, or if that’s even possible. And I know well that this isn’t about me. That some might see this ache as selfish, which is fine. It’s real, and something that I have to deal with, too.

Along with the million little hard things, there are enough freaking amazing things that keep a quiet balance of joy in our home. When Abby learns a new sign or when Casey makes a new friend who loves him for who he is. When Carter makes the basketball team or when we found out that Peyton is “gifted” (and also so super crazy). I wouldn’t trade my life and what I’ve learned. I wouldn’t trade the person I have become or even the little people I’m watching all of my kids become. Our family was meant to be this way. I believe that. And no matter how hard things get, it is all offset by the big hunk of a man I call my husband. He makes the hard days not so hard, the good days great.  He deals with everything that comes at us much better than I do. With ease, and with patience.

And he has to deal with ME, too.


autism · Uncategorized

Autism and Accountability

I heard the screaming from the door. It was dark out, but we let the boys stay out to play in the piles of newly fallen snow. The scream was one that I knew well, one that I’ve heard for more hours than I can count, a scream that could well be the tagline to Casey’s autism.

I threw on the closest shoes I had to me- sandals- and ran down to see what had happened. Apparently  Casey had thrown a snowball at a three year old and hit him in the face. The three year old’s mother was rightfully angry and had done what we have always told our neighbors to do- treat him like any other kid- send him home.  Casey didn’t want to go home, and was freaking out.

He didn’t understand. Everyone was throwing snowballs. Even the three year old. He didn’t understand the difference between throwing a snowball at another 9 year old and throwing one at a three year old.

Feet freezing in the dim porch light of the crying toddler’s house, I wrapped my arms around super-tall-for-his-age son and tried to lift him from his tantrum position, half buried under the snow. He struggled against me for a minute, and then seeing that I wasn’t going to let him continue as he was, he got up and walked home with me, wailing the entire way.

When I got home I called my neighbor to apologize. I sort of wanted to tell her that because he is autistic, he didn’t understand the difference. That throwing the snowball at her little boy wasn’t really his fault.  Problem is, it was his fault. He did throw that snowball.  I don’t want my son to think that he lives in a world where he isn’t accountable because of his disability. His actions were unacceptable, and there are consequences.

It’s a tricky line to walk, and I’m never sure I’m doing it well. Casey’s autism causes a lot of confusion in a lot of areas. There are autistic behaviors that do not need to be mediated. He can stim all he wants. He needs that, and it doesn’t hurt anyone. I could care less if he “looks” normal.  But there are some that are a function of the autism that I’m not okay with allowing to go on.

Another example. The other night we were playing the game Headbandz, which my kids are just terrible at. They all kept accidentally shouting out the answers, and it got funnier each time it happened. When Casey did it, we laughed, and he got really really mad and said some pretty mean stuff.  He was mad because he thought we were laughing at him instead of with him. That was the autism. Does it mean that I allow for him to say mean things? No.

As much as I wish it were, the world isn’t autism friendly. People aren’t going to say “Oh, it’s okay that that guy just called me an asshole because he’s autistic.” It’s just not that way. And I’m doing my son a disservice if I don’t try to help him understand things like sarcasm, idioms and accountability for mistakes that happen- even if they come in the wake of his simply not understanding what really had been said or done. He knows, even at 9, that he’s different and people don’t understand him. That’s hard. But people aren’t going to even TRY to get him if he’s terrible to be around.

Casey in the snow

I refuse to let him use his autism as an excuse to be a brat. The same way I refuse to allow ANY of my kids to not be accountable for their actions or to act like jerks.   I am doing my best to teach my kids that what matters most is just to be nice. It doesn’t mean that you  let people get away with being jerks to you either, but you don’t match them tit for tat. Because MOST of the time, people don’t mean to be mean. Most of the time, whether you are typical or autistic, people are just simply misunderstood.  If Casey’s going to want for people to try to understand him and give him the benefit of the doubt, he needs to learn to do the same, to the best of his abilities.

The next morning, we got on our boots and winter gear and walked over for Casey to apologize. Casey had spent the night feeling badly that he had hurt a small child. Had we had written off the incident as a symptom of his autism, he would have never had the opportunity to learn why what he had done was wrong. Am I sure he gets it now? Probably no. But we’ll keep working on it.


autism · Uncategorized

You’re probably not here for the beer…

If  you’re here to debate cake or Jenny McCarthy, here are some helpful links:


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Also, follow me on facebook. I go to great pains to be offensive there, too!

If you’re here because you love me, let’s talk about building an eco-friendly shrine in the comments.

autism · Uncategorized

I am an autism mom.

I am an autism mom. I write about autism from the only point of view I know: my own. I am Casey’s mother. I am not autistic, I am not perfect. I never will be. My thoughts, my points of view have evolved over the years, and continue to do so.

Casey and me
Casey and me

I am an autism mom. When Casey was diagnosed, all I could think about was “curing” him. All I could think about was wanting to get relief from the hours upon hours of screaming, biting, and hitting that we were dealing with on a daily basis.  I wanted him to be like his brothers. I wanted him to be able to connect with the world around him.  He spent anywhere between 5 to 10 hours a day in the throes of a kind of suffering I could not alleviate. I did not want him to suffer.  I did not want him to be autistic. I did not want to be an autism mom.

I am an autism mom and I write to other parents of special needs. I do not write on behalf of them. What I say isn’t the message of the parent community, but as one parent of one autistic child.  I write about the good and the bad, the wins and the losses of life with autism. I write about coming to accept my son for who he is, autism included. I write about what I’m learning. I hope that I am growing.

I am an autism mom and I look to autistic adults for direction, for guidance, and for a window into what is going on with my son. I look to people like Rachel Cohen Rottenberg,  Ari Ne’eman, Temple Grandin and my adult autistic friends for this perspective.  Autism parents like me need all the help we can get.

Autistic adults have spoken loudly about the “infantilization of autism” –  or “When members of the public envision the disability of autism, they most likely envision a child, rather than an adult” (Disability Studies Quarterly, Stevenson et al). This is a very real thing. When people think about autism, they think about children. This often makes the adults with autism feel invisible, and I’m not okay with that. Their voices are powerful and necessary.

I am an autism mom and I support and love the autistic adults that I have the pleasure of knowing personally and through their blogs and books. I cannot and will not speak for them because I feel like they are doing a better job of it than I ever could. I want my son to grow up to be the next John Elder Robinson or Steve Summers.  And right now, I’m doing the best that I know how to to teach him that he can be anything he wants; and that his autism makes him “different, not less”; and that it enables him to do things that he could not do otherwise.  In teaching him or writing here, do I always get it right? Absolutely not. So I’m asking for the patience and understanding of autistic adults as I try to navigate autism. And I promise these amazing adults nothing less in return.

I am an autism mom and I’m trying to understand. I’m trying to understand autism through parenting my child and through my association with autistic adults.

I am an autism mom and I’m begging you to try to understand me as well.



Why you want a doctor on the Autism Spectrum.

I had a weird pain under my ribs. Everyone said it was gallbladder, and at one point, I was totally cool with them just yanking the sucker out. Fortunately my general practice doctor isn’t super into unnecessary surgery, so he sent me off to a GI doctor to see what was going on.  My GP told me that the guy he was sending me to was the best, “but…uh…his bedside manner….is…well…” I told him I didn’t care just as long as he FIXED ME.

The secretary warned me he was running late, which didn’t bother me a bit because sitting alone in a waiting room reading a magazine is actually quite dreamy. When it was my turn, the doctor didn’t shake my hand, didn’t look me in the face, didn’t apologize for being late.  He was wearing jeans and running shoes.  He went behind his desk and spent the next fifteen minutes telling me about his amazing voice recognition software and how it made it so he didn’t have to type because he could never really do it. And though he was excited about the software, everything word he said was in a  monotone almost-mumble. As the time ticked on, I could see how others would see his behavior as strange or unprofessional.  But the more he told me about the software, the more he was blatantly honest about my handwriting, my weight, my history, the more excited I got…

This guy is autistic!

I will be the first to admit that I see autism EVERYWHERE. I’m also no diagnostician, but as this GI spoke, my mind checked off all of the symptoms of ASD. I’m not saying he had it for sure, but he was every bit autistic as my son Casey.

And he was AWESOME at his job. I told him everything that was going on and he said, “No, that’s not gallbladder, it’s muscular, look!” Without asking me to follow, he strolled out of his office and into the exam room.  His exam was quick and thorough, as though I was a mannequin.  And he was right! It’s totally muscular. The significance of a specialist in one area telling me that the problem is not in his field of expertise is huge for me. I spent two and a half years in chronic pain before I found a doctor who would said, “this isn’t ovarian, this isn’t scar tissue, this is muscular.”  This guy did it the first visit.

And this is why you want an autistic doctor: because beside manners don’t mean a damn thing when you just want to be ‘fixed’. Because it doesn’t matter if he’s nice or if he tiptoes around your weight if he’s not going to listen to your symptoms and figure out what REALLY is going on with you. He’s not going to order tests you don’t need to cover his butt or perform surgery unless it’s absolutely necessary. Sure, you won’t leave the office feeling warm and fuzzy, but you will leave one step closer to having an answer for what is going on with you. And for me, that’s what I prefer.

On top of all of that, the doctor didn’t just give me some relief to the pain under my ribs, he gave me more hope in my son’s future. Casey’s social skills aren’t fantastic. But he’s terribly smart. He figures stuff out in a way that I can’t quite comprehend. As I watched this doctor go on and on about the voice recognition software as he excitedly strummed his fingers against the sides of his chair, I saw a grown up Casey sitting there.

Doctor Casey. Sounds cool, right? And now, doesn’t seem to far out of the realm of possibility.

Abby · autism · confessions · Down syndrome

Sometimes, words just don’t work.

Abby is two. She’s every bit the two year old that my other two year olds were with an added dose of diva. She’s been SPOILED. She’s adored everywhere she goes and gets what she wants from her brothers. And we are paying. She’s been throwing fits like you would not believe (or would). Thus completely shattering the stereotype of all children with Down syndrome being loving and cute ALL OF THE TIME. She is most of the time. But not all. And she can throw a tantrum with the best of them.

And, as I found again today, so can I.

Other than the behavioral issues we are addressing, a huge cause of Abby’s fits is her inability to communicate her wants and needs. One of her many tantrums today lasted for over an hour.  I held her and rocked her as I tried to calm her down. It brought back the YEARS I spent doing that with Casey. Trying to figure out what was going on with him. The difference between the two is huge, though. Though both could not communicate at this age outside of a few signs, Casey could not be soothed. He’d spend hours upon hours screaming, and there was nothing I could do to help him through the storm.

While I rocked her, I scrolled through my Instagram feed and saw normal people living normal lives. Pictures of family outings, potty training, eating normal foods with normal liquids, all with captions of the words their children, lots younger than Abby, are using.

I was jealous. I was sad.

I tried to suck it up. I tried telling myself with positive affirmations that things were going to be fine. I tried to keep my anxiety relegated to the dark corner of my heart where it should live. I tried to remember all of my blessings and how far Casey’s come.  I tried to not remember the thousands of hours spent in speech therapy with him. I tried not to think about the thousands more hours I have to spend in speech therapy with Abby. I tried to have hope that she’d one day be able to communicate fully.

And then I stopped trying and cried. The frustrations fell with the tears, and I felt myself relax. All of the time I spent trying to convince myself with positive words only made things worse. Letting the frustration go in the form of a very ugly cry does not mean I do not acknowledge the good in my life, of which there is an abundance. It just means that there are different avenues to healing. Sometimes, words just don’t work. I needed to cry.

Both Abby and I stopped crying about the same time and sat sniffling and hiccuping for a while. She got through whatever it was that she needed to be pissed off about and I got through mine. We both threw a nice tantrum and moved on.

For now…

autism · Uncategorized

Our Autism Miracle.

I posted yesterday about my worries because of the autism association with the Newtown shooter. It was a rough day. It wasn’t just that one status update. It was several facebook pages that kept coming up. As soon as they’d crop up, someone would post them, then the rest of us would report them to get them taken down. One was called “Cure Asperger’s, Save Children From Psychokillers.” I sent him a message, and he wrote back (it’s just called “Facebook Page because the page was taken down):

It hurt. It hurts that people are SO adamant about curing autism when there is no cure, and that people don’t see how important it is for our children JUST to be accepted.

I am a part of an amazing group of writers who are connected to the autism world. Some have kids with autism. Some have autism themselves. Some have autism AND kids with autism. These people have taught me more about my son than I could have ever learned on my own.

Together we work to keep nasty facebook pages and hate speech as far from the public arena as we can.  We advocate for our kids in schools, online and in society. We write. We make calls. We visit our legislators. And some days, we just feel like we are spinning our wheels. Yesterday was one of those days. I posted what this person had said to me on my status update. I was told to ignore him. That there are trolls everywhere. This is true. I can’t fight everyone on the internet. I don’t even want to. But these are people that are LOUDLY advocating for people to HARM my child (there was a page titled “Fifty likes and we set an Aspie (high functioning autistic) on fire.”

I was reminded that these people are the minority. That might be true as far as the really hateful people, but even within the autism community there is some backlash against us saying that autism does not equal planned violence.

I get that. My son was violent. He hurt me and his siblings.  That kind of violence is COMPLETELY different from the kind of violence we saw in Newtown. Casey would lash out because he was overstimulated, frustrated, couldn’t communicate, and couldn’t calm down. He never MEANT to hurt me. He never PLANNED any of it.  It’s just not the same.

Weary from fighting a battle that I was not winning I simply said, “Then what do we do?”

The autism writers and I have talked about this a lot. We didn’t have any answers. I had shared with them the day before the “IDSC For Life” campaign. It’s a beautiful visual message about people with Down syndrome. I thought maybe we could do something like that. A few of my friends posted pictures of their autistic children with a little bio about them. They were beautiful. In my sadness, I remembered the picture of Casey I had taken that filled me with joy. I wrote a little blurb about Casey on it and posted it to my own facebook page.

 Within an hour, it was shared over 100 times. I cried as people began to post it to their own pages. Others within the group made their own, and we started passing them around like super amazing baseball cards. Then they got passed around more. Then more people made them and started posting them to my page and to the pages of my friends.

We quickly decided to start a page to collect all of the pictures. We didn’t know what to call it until Tim chimed in. He already had a page. He already had a website. He had named it “Autism Shines.” It was perfect. The page was born late last night and at this point, less than 24 hours in, it has almost 1,500 likes and well over 200 people have posted pictures of their own children. These pictures have been shared THOUSANDS of times now, and the internet is slowly being flooded with the message we’ve all been so desperate to share: Autism SHINES. That people with autism are smart, wonderful, gentle, and loving people who deserve to be loved in return.

Please visit the page. Please share the page. We want the world to see that autism does not cause the horrors of last week. It can be challenging, but it is also amazing. We are all grateful for the way autism has changed our lives.

If you want to add your picture, too, we’d LOVE to have it. Come, be a part of our autism miracle.