it’s in a word: autistic vs. has autism

its in a word autistic vs has autism
You may follow my blog and wonder why I say “(insert name) is autistic,” when you feel strongly it should be, “(insert name) has autism.” The second is described as being person-first language. I’ve had discussions with parents and grandparents who are strong proponents of the person-first language. I understand this. Not wanting your child or grandchild to be defined by one aspect of their personhood is admirable, but when we really consider what saying, “(insert name) is autistic” means, we can see that it’s only a part of who they are, not the whole.

When I began this journey, I solely used the phrase “has autism,” I felt it was the respectful way to address someone on the spectrum, I felt my son shouldn’t be called autistic. I listened and was part of the discussions about person-first language. I believed saying, has autism was much more considerate than saying they were autistic.

Then something changed. I started listening to the voices of autistic adults. Those adults who have been there, done that, lived with autism, dealt with onlookers, naysayers, and abuse, say they want to be called autistic and call themselves autistic. I’m not saying this is true of every autistic adult, however, there are many who’ve voiced their opinion on the word. This is what they want.

I feel it’s important to look at others who’ve forged the road ahead of us. It’s especially true when we don’t have the disABILITY, but are trying to raise a child who does. So, I began to really consider what these autistic adults were saying. Why did they feel so strongly about “autistic” versus “have autism”? What was their reasoning? And, what should I do about it?

Autistic adults make the point that you can’t separate autism from the person, thus the person is autistic, they don’t simply have autism. Jess at A Diary of a Mom writes, “John Robison points out in his book Be Different, when we talk about people having something, it’s something bad. He has cancer. He has a cold. He has the flu. When was the last time you heard someone say, ‘He has intelligence?” or “Wow, she really has giftedness and talentedness?’”

About the word, autistic, that many feel grates at their ears and defines their children, Jess adds a great point. She says, “Calling a person Autistic doesn’t mean that’s all they are.” If you say someone is intelligent, don’t they also have the ability to be generous, thoughtful, or artistic?

I would never say that autistic is all my son, Jeremiah, is. Absolutely not. But I can’t deny that autism is a big part of who he is. I want to say, but don’t have the ability to, that he would be very different if it wasn’t for his autism. But, I can’t know can I? I can’t know because he’s autistic. That autism makes up so much of who he is, how he functions, how he responds to me, what he does, how he feels. It’s in every part of him. And it’s not bad. It’s really beautiful.

Side note: I found this awesome quote by Walk Down Autism Lane on Pinterest that speaks my heart,

“They said he was off in his own little world…But, he held my hand and took me with him. It was beautiful.”

I quote Jess because she’s had tremendous more opportunities than I to speak with autistic adults. She also says about the matter, “So just as one can be described as Jewish or Catholic without taking away from any of the other possible descriptors, they can also be described as autistic and still be thousands of other things too.” In, Why I Dislike Person-First Language, Jim Sinclair, an autistic adult, says something very profound, “It is only when someone has decided that the characteristic being referred to is negative that suddenly people want to separate it from the person.”
Jim Sinclair quote

Sinclair explains how autism is essential to who he is: “Yet autism goes deeper than culture and learned belief systems. It affects how we relate to others and how we find places in society.  It even affects how we relate to our own bodies. If I did not have an autistic brain, the person that I am would not exist. I am autistic because autism is an essential feature of me as a person.”

For me, I don’t stand on either autistic or has autism as being the end-all. I don’t like division in the autism community, just as I don’t like it in the adoption community. I use both references interchangeably, but find myself using autistic more often. I’m not offended when someone says my son has autism or when they refer to their child in the same way. We each have our reasoning for using certain terminology.

I often see that those who use the term “has autism” as those who want to take autism away from their child. There are autistic adults who balk at this, yet I know that when your child has severe needs you only want them to feel better, to not struggle in society, not be looked down upon, not battle sensory issues. We need to look at the wonderful attributes of our children no matter where they fall on the spectrum, they are humans with dignity.

We need to respect each other and where we each come from, what autism we’re each living with.

So what do you do? As I’ve said, each person will have their opinion of how they want to be referred to, but many adults prefer the term “autistic.” Many parents and grandparents prefer you say their child “has autism.” I would recommend going with what you’re comfortable with or what the person living with autism has requested.

This post is only meant to share with you why I use the terminology I do, so I can refer others here when I don’t have a short answer. It’s also meant to educate and share a wider view, one that comes from those who’ve walked our child’s path already.

The quotes from Jess were taken from her post Person First on A Diary of a Mom, which I recommend reading in it’s full context.

*Please see the CONTENTS page for links to more posts on autism, adoption, and foster care.


You can receive each post made to Lovin’ Adoptin’ by subscribing in the upper right corner. If you’re on a mobile device, this can be done on the web version. You can also “like” my Facebook page and follow me on Twitter and Pinterest for more helpful information and links.

they can hear you

can a person with Autism hear and understand?
I’m sharing this wonderful post by Jess at Diary of a Mom because what she says is essential to being an Autism parent. We must realize this as we move forward. We must make what she says part of our every move, our every word.

Just as Jess states, I’m also so thankful for those who’ve taught me lessons about Autism that I would never have learned if they hadn’t come into my life. For me, those voices who’ve changed my outlook on Autism aren’t just the Autistic adults, but also Jess (Diary of a Mom) and Ariane at Emma’s Hope Book. I hope you take the time to read what they have to say. It’s so important for our children’s futures.

a diary of a mom

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{image is a photo of me at a podium, speaking into a microphone at an Autism Speaks walk kickoff in 2010.}

Yesterday, I read a post that was written a couple of months ago, but just made its way to my screen. It was written by a woman who goes by Amythest on her tumblr, Neurowonderful. She describes herself as an artist, writer, public speaker, advocate, and activist who writes about autism and disability.

In the post, she describes a painful interaction with the father of an autistic young man at a recent Autism Speaks Walk in Vancouver. She and a number of other autistic activists had set up a table at the walk in hopes of educating walkers about some of the harm that the organization does in their name.

The post, poignant and important throughout, became excruciating to read here ..

The worst part of all of this is…

View original post 1,600 more words

what do you do with expectations?

what do you do with expectationsYou can listen to a recording of this post – just scroll to the end. 🙂

I’m surrounded by people who think they are living their life right. Though I have to admit, I felt the same way before I entered the world of foster care, adoption, Autism, disorders, and my disease. I thought I had it together, thought I knew how to live life, thought I knew how to raise a child. I was wrong.

Do you feel judged for the way you’re living your life? Do others make suggestions, do they offer you alternatives? When you foster or adopt, so many of life’s regular routines and expectations get thrown out. You realize they don’t work. You live life, and for you, it might be wonderful, but that’s not how others see it.

It’s like you live in a fish bowl with all you can handle and others are plunking little stones into your precious habitat, and you have to heave each one up and out over the side. Those stones (expectations) are heavy, they give you more emotional work than you can carry.

It’s super easy to say, “Ignore them, it’s your life, do what you have to.” But what if it’s family? What if that family doesn’t live across the country?

I have a chronic illness, a rare disease, and no matter how much it’s explained (with physical evidence even), it’s never understood. I don’t clean my house enough, my husband does much of the cooking, and in the yard, there are weeds where there isn’t grass.

It should be enough that we adopted from foster care and have dealt with multiple disorders and diagnoses. It should be enough that our son has nonverbal Autism and needs a lot of supports. People should understand that my husband is self-employed, and built his business from scratch. These aren’t enough reasons to not have the perfect life.

But, the fact is, I don’t WANT what looks like a perfect life. I don’t need to live life like everyone else around me. See, I have riches they can’t even grasp.

I have found this hidden treasure, called my family. They are so much more important things than being able to say I bagged twelve loads of grass, or mop my floor daily.

I have to take care of myself so I can be the best mom I can be (and yes, sometimes I fail). People don’t see how great my son is doing, the progress he’s made – well they see it, but then their expectations for him and I rise. If they would take time, they would also see how much Payton has changed since we brought her into our home. Strangers can acknowledge it, but not those closest to us – or if they do, they don’t say anything.

It’s so hard being judged. I would love to throw it aside and accept who I am and what I do. But, I still find myself looking for others approval, or at least their acceptance of my life. It’s something I need to work on, but I have a feeling I’m not alone. Especially when I know others are struggling with their foster or adopted children, or living with Autism. People don’t understand why you can’t join them for dinner in their home, they want you to be available, they want your children to be perfect. Expectations.

So, we set our own expectations for our family. We do what works for us. We do it that way because we know it’s what we can maintain. I sleep in because I have a disease that wears me out intensely. I don’t take the kids grocery shopping because I’m blessed with a husband who does it for me (with the kids). He gets it. We do this because it works. The world may disagree, but it’s what allows me to be me, and it’s the best outcome for our family.

What about you? Do you feel judged by others? How do you deal with it?


You can receive each post made to Lovin’ Adoptin’ by subscribing in the upper right corner. If you’re on a mobile device, you can do this on the web version. You can also “like” my page on Facebook and follow me on Twitter and Pinterest for more helpful information and links.

it’s not a pity party if someone else throws it (Autism)

it's not a pity party if someone else throws it (Autism)
Opinions. They abound all around me. Today I’m talking about parents of children with Autism having opinions. We have opinions and they are usually quite strong, and rightly so, it’s our child, it’s our family. One of the notions I wanted to tackle today is the Autism parents opinion that people shouldn’t have pity, or feel sorry for us and our child.

I would like to take a look at why people have pity or feel sorry for Autism parents and their children, and then give you a few ideas to contemplate.

It’s fairly common that when someone gives birth they don’t go in with expectations that their child may never talk, have meltdowns when they’re sixteen, not be potty trained until age thirteen, or live with them forever and never have a girlfriend. (This is not the case for every Autistic person, but bear with me.) So, when others hear that your child has Autism they may feel bad. They don’t realize that you’ve accepted your life (if you have) and moved on. They don’t know that you’re okay with (if you are) all the effects of Autism I listed above. If your child has Aspergers, they don’t know that your child isn’t like what I listed above and

they may not understand the Spectrum part of Autism.

And it’s very possible that when a mother gives birth to a child who has Autism, or when that child becomes Autistic, they are sad. They don’t immediately see into the future, knowing that they’ll adjust to their new life and it will be okay. Those people who have pity for your child haven’t developed through what you have. We morph with everything that comes along. Every mountain we face, we climb. When others find out about our child’s diagnosis, they’re stuck in the beginning, looking up at the enormity – the part we’ve tackled.

What if someone feels bad for my son? It’s okay, because there are days when I feel bad for Jeremiah, so can I understand when someone else does too? I feel bad when he can’t communicate and he’s crying, tears rolling down his face. Or when he can’t explain that he had a nightmare, and I can’t console him because I don’t know about it. I feel bad when he doesn’t understand why we can’t get fries at every drive-thru we come upon. I feel horrible when his sensory needs can’t be met and I don’t know what else to do – I’ve offered spinning, jumping, flashing lights, a quiet room, a squishy toy, and chewy necklace. I feel bad for him often.

What about when people show pity for our family?

There are days when I feel bad for myself. Sometimes I’m sad that we can’t simply call the babysitter and go out for dinner or a movie. I’m sad when we can’t both attend our daughter’s school event because Jeremiah can’t go. This doesn’t mean I’m sad about my life, it doesn’t mean that I want anything to change – because I would take Jeremiah the way he is over anything I might want to do. But that doesn’t mean that I’m not sad sometimes.

If someone else feels sorry for us, it means they have sympathy, they don’t know what it would be like to live in our shoes.

Can we rate someones sympathy on a scale from pity to just feeling a little sorry for us? I don’t think so. Sure there will be those who spew their sentiments that they feel SO bad for us or for our child. We can answer truthfully, but kindly. I’ve said, “Thank you. Sometimes it’s hard, but it’s okay.”

I honestly don’t get a lot of pity. Maybe it’s in the way I talk about Autism, or that no one I’ve told really understands Autism (usually that’s the case). I’ve had some wonderful intellectual conversations about Autism. One recently diverted to a story about Rain Man, and I said, “Yeah, it’s a Spectrum, and there’s everything in between.” I didn’t want this guy thinking my son was going to begin quoting the birthdays of every President, Prime Minister, King, and Queen of every country.
why people have pity for our children (Autism)

I wish there was more sympathy for Jeremiah and our family. And maybe there are a few others like us.

When we visited my family over Christmas vacation, Jeremiah didn’t receive pity, but was talked to sternly because he was beginning to climb on the t.v. stand (which could’ve held Jeremiah’s weight just fine, but it would’ve gotten scratched). No pity. Jeremiah had also squeezed in between a side table and hutch and knocked over a lamp (it didn’t break and isn’t expensive by the way). The second time he did (before I even had a chance to recognize what was going on – this was ten-minutes after our arrival and seven hour drive) I was told in an austere manner, “You might want to get him out from behind there.” There was no understanding of WHY Jeremiah was trying to get behind the hutch. He was trying to get in a small space and hide. No sympathy. No pity.

There’s no pity (or understanding for that matter) coming from the other side of our family. They weren’t able to take care of Jeremiah during Payton’s Christmas school event because of piddly reasons they could’ve done the following night, one family member added, “He (Jeremiah) needs to learn to be in society.” I laugh (instead of crying – which I do plenty of) because this person has never taken Jeremiah INTO society.

There is no sympathy for our family.

When people feel sorry for us or show pity, it’s often because they feel they couldn’t do what we do.

The truth is, some could and some couldn’t. People say, “I do it because she’s my child, and I would do anything for her, just as you would if it were your child who was diagnosed.” That may be true for some, but not for others. We all handle adversity differently.

I can say the only reason I can do what I do, is because I have an extremely supportive husband. Yes, we have disagreements (okay fights – but it’s mostly me doing the fighting), but overall my husband is my rock.

Could I do it without him? Maybe, but I know it wouldn’t look like it does now, not even close.

It’s always pained me when I hear others say they don’t want people’s pity or don’t want others to feel bad for them (as I think there is a sliding scale, but it’s hard to tell sometimes where someone stands). Often people say, “I’m so very sorry,” because they don’t know what else to say. We received many of those comments when Jeremiah was first diagnosed, and I was okay with it to some extent. I was still trying to accept a new diagnosis and a new way of life, and they didn’t know what to say. They assume it isn’t what I expected.

I would love to hear your experiences of people feeling bad for your child and your family. Share how you feel and what you do about it.


You can receive each post made to Lovin’ Adoptin’ by subscribing in the upper right corner. If you’re on a mobile device, you can do this on the web version. You can also “like” my page on Facebook and follow me on Twitter and Pinterest for more helpful information and links.

TOP 4 posts of 2014 (and more)

Hi there! Wow, it’s been a while. I took a much longer break from Lovin’ Adoptin’ than planned over the Christmas holiday. I hope you all made it through the holidays as I know many of you have some extra challenges.

2014 has been a busy and productive year for Lovin’ Adoptin’. Although my goal was to write that book which is based on much of the information included here, plus more, a look back at the year has made me realize that other great things were happening.

First, thank you to those who follow my blog. Lovin’ Adoptin’ is always increasing in views, and this as well as your comments, will help in getting a publishing house to publish my book when it’s ready.

Second, I had some great opportunities in 2014. I did an interview with Rebecca Vahle on Adoption Perspectives Radio Show (you can see the link to the interview below). I was asked to write for Adoption.com, however their guidelines were very stringent and I wasn’t able to say I write for them, which is essential when trying to procure a book deal – they want to know your writing experience.

Another unexpected opportunity I received this year was speaking to nurses at our local hospital. It began with a questionnaire I filled out about our experience at the hospital with our son who has Autism. I added a letter because, well, I’m a writer. 😉 It was written kindly, but laid out that with more understanding of Autism in the hospital our experience would’ve been much better.

After reading the letter, the Pediatric team invited me to speak to them. The Director of Woman’s Health and Childbirth was in attendance and asked to send out my information to all the hospital staff. This led to a phone call with the Nurse Residency Program Coordinator & Clinical Resource Specialist at the hospital, she asked me to speak to new nurses in her training a few times a year! Wow, I feel so privileged to be able to share with these nurses about Autism.

In 2014 I was also asked to write a couple articles for an Anthology on Autism which will be published by the University of Michigan. I’m honored.

So, I thought I’d begin the new year by sharing some top posts of 2014 and add some more that I feel are important reads.

top4posts2014

  1. Why Consequences and Rewards Don’t Work (Adoption & Foster) This topic has been hugely popular. I don’t know why comments haven’t been posted on it, however it’s been viewed thousands of times in the last year. I think many adoptive and foster parents can relate and I give steps to take to help your child. As always, I never intend to label the problem, but never give solutions. Another post which is often viewed in connection with this one is, 7 Reasons Why Time-In, NOT Time-Out. Because of these two posts, I was asked to do a radio interview with Rebecca Vahle on Adoption Perspectives Radio Show.
  2. Lies Are Like Flies and Multiplying Quickly: Why Adopted and Foster Children Lie – This issue is obviously not only related to adopted and foster children, but I lay out reasons why hurting children lie.
  3. 4 Reasons Why You Should Teach Your Autistic Child to Swim – Drowning is the #1 cause of death for children with Autism. There is a link within this post on how to help teach your child to swim.
  4. 6 Things You Shouldn’t Say to, or in Front of Your Adopted or Foster Child 

And a few more important ones:

Why Adopted and Foster Children Have Sleep Issues (Sleep Issues Part 1) – Most adopted and foster children have a hard time sleeping, so much so that they don’t even sleep during LONG car rides. In this post I explain why this is, and link to an additional post that gives a step-by-step process that will help build trust with your child and help them fall asleep.

Inclusion Vs. Exclusion: Special Needs in the Classroom – I’ve had many conversations about schooling and the special needs child. This explains what inclusion is and why it’s essential for children who have special needs.

These are jest a few topics I’ve covered, you can view lots more on my Contents page.


Thank you for reading, I wish you all a wonderful 2015! You can receive each post made to Lovin’ Adoptin’ by subscribing in the upper right corner. If you’re on a mobile device, you can do this on the web version. You can also “like” my page on Facebook, and follow me on Twitter and Pinterest.

look for the “why” – Autism & ABA therapy

look for the %22why%22 - Autism & ABA therapy
“One of the keys to allow children with Autism to thrive is to understand how they process information, and adjust their education and activities accordingly.” – Dr. Mercola

Sparrow Rose Jones, an Autistic adult, wrote a guest post for A Diary of a Mom  about Applied Behavior Analysis (ABA) therapy. I was shocked by what I read. Do you know how ABA began, what the concept was behind it? You may know the premise of how it was started, but stick with me because I will give you some ideas on how to help your child, and how to tweak ABA to help your child more efficiently and respectably.

Dr. Ivar Lovaas is the psychologist who established ABA. Sparrow wrote an excellent article containing in depth information on the therapy and goes to great lengths not to make parents who’ve supported ABA for their child feel guilty. In the article, ABA – by Sparrow Rose Jones, she says, “Much has changed, but this core premise of Lovaas’ work remains solid. ABA’s core belief is that forty hours per week of therapy geared toward making a child externally appear as “normal” as possible will “fix the brokenness” inside that made the child behave that way. ABA believes in an extreme form of ‘fake it until you make it.’” Shockingly, Lovaas said, “You have to put out the fire first before you worry how it started.” 

This isn’t how Autistic people should be treated. And, frankly, that’s not how to best help a child or adult who has Autism. This idea completely ignores their humanity. 

Consistently looking at what needs to be fixed in an Autistic child is a bombardment of negative thoughts.

We have to see the positives in the Autistic person if we’re going to instill in them a sense of worth.

How would we feel if every action of ours was looked at as wrong, and in need of change? What would that do to our self-esteem? If all you ever heard was that you needed to fix what you do every day, it wouldn’t give you hope, it would be quite discouraging.

I’ve talked about it before, but forty-hours of therapy for a child is beyond what they can or are should be made to handle. Children need play, they need down-time, they need to be a child. Emma (age 12, not positive of her age, but it’s close to this, and non-speaking) of Emma’s Hope Book says, “Autism is not a developmental delay, rather it is a different road entirely.”

When you can see that Autism is a different road entirely, your mind opens to such possibilities. Life is smoother, brighter, and different, but in a good way. It’s acceptance, but it’s acceptance that’s good. 

We can’t look at it from Lovaas’ perspective, “putting out the fire first before you worry how it started.” No, we need to completely shift that idea on it’s head. We have to find out why FIRST, then move on to help our child.

If we don’t have the why, we really can’t help them in a humane way.

So, why? Why is your child irritated? Why aren’t they focusing? Why are they jumping or spinning? Why are they chewing on their clothes? Why are they crying or upset?

Is it sensory issues (because most children with Autism have sensory issues). Is their tag bothering them? Do they not like the person who’s teaching them (because if your child is nonverbal, they can’t tell you how they feel)? Are the lights too bright? Are the colors in the space too bold? Do they need a chewie to help with oral issues? Are they crying because they’ve been through this routine hundreds, if not, thousands of times and are tired of it because it’s hard?

Watch your child closely, watch their eyes, listen to their sounds, watch their body language to find answers to these questions.

When you find the “why” it will be a beautiful present you can unwrap. Autism is so complex, but so amazing.

look at your child's abilites
Lia*, the Developmental Interventionist who came to our home to do therapy for a few years taught me so much about this. She really looked at the “why,” and although she’d been trained in ABA, she knew how to modify it to fit Autistic children. She was amazing. One day I called her, in desperate need of advice. Jeremiah had been standing on the t.v. stand, table, counter, and on the back of the couch. I couldn’t keep him down, consistency wasn’t working.

Lia, knowing Jeremiah has Sensory Processing Disorder said, “He’s probably looking for a higher perspective. He likes what he sees when he’s up there. Put him on something high that he CAN stand on, take him outside to the top of your play set.”

I was so relieved. Could this really be the answer? I have back problems and lifting a strong five-year-old down from up high was really wearing me out, plus that’s not what I wanted to do all day. I tried it, and after being consistent with it for a few days, he stopped climbing on furniture he wasn’t allowed on.

Other Autism parents can give us great perspectives too, depending on which ones we listen to. I was talking with one of those Autism parents the other day and she mentioned that they teach their son in the way he learns. Her son learns through music, so they use it to teach colors, shapes, etc. She said he sang words before he talked. I love it.

Then I thought about how Jeremiah learns, and that is through sensory. We found this out through working with Lia. Yeah, she’s done wonders for us and Jeremiah!

Everything we can possibly teach him with sensory, we do. Meaning, when we asked him not to touch the t.v., we put our hand on his and removed it gently, while saying, “Hands off.” We used hand-over-hand when putting puzzle pieces in their places. We used hand-over-hand while telling him to put his snack back in his cup. When teaching Jeremiah how to swing, I put his legs back, while saying, “back,” and moved them forward when saying, “forward.” (While using hand-over-hand, if he resisted, we let go after a count of two or three, it wasn’t done forcibly.)

I can’t tell you what a difference it’s made hearing Autistic adult’s perspectives, having a therapist that saw who my child is and what he needed, and not looking at my son’s disability, but what his abilities are and how I can help him best. It’s taken some really amazing teachers, and I have a long ways to go, but I’m eternally grateful.

I received a comment the other day on Twitter from a mom that was upset by another post I wrote. She said in part, “My verbal son doesn’t love Autism.” I’m really saddened by this. Sure, there are bad days with Autism, but aren’t there for all of us? For the most part my son is happy, and I don’t feel he would be that way if I was more negative. When I’m negative, he’s definitely not as happy. I’m a large determiner of how my son feels about himself.

Here’s a great quote from Jess at Diary of a Mom,

“And it’s funny really (in a not funny at all kind of way) that we talk so much about the inflexibility, the rigidity of those on the autism spectrum when really, isn’t it US, the so-called neurotypical population, who are stuck in this frightfully narrow rut of perception? Isn’t it us who insist that Autistics conform to our version of… well, everything? Isn’t it us who are really so rigid in our thinking as to be capable of believing that other ways of processing, thinking, communicating, experiencing are wholly invalid? That’s pretty remarkable (and, in its practical application, horrifying) stuff, isn’t it?”

I’ve written two other posts on ABA, My Thoughts on Applied Behavior Analysis, and More Perspectives on Applied Behavior Analysis.

You can receive each post made to Lovin’ Adoptin’ by subscribing in the upper right corner. If you’re on a mobile device, this can be done on the web version. You can also like my Facebook page and follow me on Twitter and Pinterest for more helpful information and links.

the secret joys of Autism

the secret joys of Autism
When you have an atypical child, the little strides they make in life seem to be so much more monumental than if a typical child would have accomplished them. For example, a couple days ago, Jeremiah fed the dog from the table. Now, if he were a typical kid, I might laugh, and then teach him not to toss the dog food he doesn’t want. Jeremiah’s not typical, and first the fact that he recognized the dog and touched the dog without trying to move him out of the way was pretty cool in itself. The fact that he held food out to the dog, dropped said food, and watched the dog eat it, is awesome and I’m jumping for joy, just as with so many other moments in my sons life.

Because events in his life don’t come as expected, we really celebrate small, fragmented moments. They are rich, memorable, and worth celebrating. And we’ve been blessed to have many of these occasions lately.

I’ve been working on playing with a ball with Jeremiah for over three years now, not as consistently as I should but…This past summer he dropped a ball and picked it up, BIG deal! I worked with Jeremiah all summer on kicking a big ball in the backyard, he tolerated it some, and I didn’t push it when he was finished. Then, I found out that his school has been working with Jeremiah on rolling a ball back and forth with a friend. The teacher would sit behind Jeremiah and roll it with his hands. Well, before Thanksgiving break, he rolled the ball ON HIS OWN to his friend twice!

Not only is rolling the ball important, but he was playing with another child. This was the main component we focused on when making a case that he should stay in preschool another year. (Ha, question whether God exists? Read what happened with that in LINK (school boards decision).) We needed Jeremiah to have a foundation of play before he moved on in school, we know this essential piece would be missing if he didn’t have more time to engage with children his age in a play based setting. And here, three months after school started, he’s playing with another child. Utter elation!

Almonds…Jeremiah eats an average of two to three foods at a given time. Sometimes he'll add almonds to that mix - we celebrate each time he does.
Almonds…Jeremiah eats an average of two to three foods at a given time. Sometimes he’ll add almonds to that mix – we celebrate each time he does.

This summer play dough experiences didn’t go so well, but it’s been improving at school this year, he’s licking it, but not eating it – hey, he loves salt! Over Thanksgiving break, Payton was playing with play dough. I sat next to Jeremiah and I was able to press his fingers in it, roll the play dough, make it into balls, I made different sized squares and talked to him about biggest and smallest. He sat there and didn’t pull his hands away, or if he did, it was only momentarily, and he stayed, he didn’t flee from the fun. It was a blast! I was so happy, I sounded like a preschooler, making up songs with my daughter as we played – all three of us together. Lovely.

When Jeremiah was three, he would scream and cry when his play dough was squished or made into a different form, he couldn’t handle the change, so this is wonderful.

At his Grandma’s daycare she said he’s running with the other kids, they were flying toy planes in the air, and he was using his doodle pad as a plane. Love it.
doodlepad

Another day at Grandma’s, he wasn’t eating lunch there, but she had set the table for the other kids. He has his spot he sits at to eat, and it was empty. He moved everything from one kids spot to his; cup, plate, napkin, and silverware. I think things he does are funnier because he doesn’t talk. We talk for him, “Um, you forgot about me. I’m eating here by the way.”

These are things that so many parents take for granted. They take so many moments with their children for granted, even I take them for granted with my daughter. 

We Autism parents get to experience this exceptional joy when our child does something we’ve been waiting years for.

Maybe we don’t even know we’ve been waiting for it, but when it comes, we smile ear to ear, nothing seems more important in that instant. I wasn’t waiting for my son to fly planes through the air, I don’t have these dreams of my son playing football, or kickball, but when and if it happens, I can’t tell you the exultation I feel.

It’s beautiful. It’s exceptional. It’s Autism.

I owe my outlook on Autism to Ariane, Emma’s mom, and author of Emma’s Hope Book, and A Diary of a Mom, Musings of an Aspie, and other Autistic adults, and our past Developmental Interventionist, Lia*. If it weren’t for them, I feel I would be stuck in a “poor me, my poor child, my poor family” mentality. Although I hadn’t fully gone there, I definitely used to focus more on the negative and stopping behaviors than looking at the positive and working with those to help Jeremiah develop.

It’s because of these great advocates that I’m able to feel so much joy when Jeremiah gains a small skill or does something out of the ordinary. If I was focused on the negative I would be depressed and not able to see what’s really in front of me. Beauty. As Emma, the inspiration of Emma’s Hope Book says, “Autism is not a developmental delay, rather it is a different road entirely.”


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I wish the worlds view of Autism would change

I wish the worlds view of Autism would change
WARNING: Graphic information below, not for all audiences.

Justin and I were watching a past episode of Law & Order SVU last night. It was going as pretty much every Law & Order SVU goes, although I haven’t seen an episode in years. This time there was mention of the offender being “on the Spectrum.” Not everyone watching the show would know that “on the Spectrum” means Autistic, but I did, and it bothered me.

I pressed pause and looked at Justin. “I don’t think I want to watch this anymore.” Justin’s an awesome husband, but he didn’t understand why I wanted to stop it. I continued watching the show, but soon pressed pause again.

I told him this. This, which I was shocked I hadn’t told him. This, that our life has been too overwhelmed to talk about.

I told Justin stories I’ve heard in the past weeks that break my heart and make me fear for our son, Jeremiah.

A few weeks ago a mother killed her Autistic son, London. She threw him off a bridge.

Heartbreaking. Unimaginable. My heart cries for this six-year-old boy. Just one-year older than my son. In photos, he’s smiling, looks engaged, and is playing, flying a toy plane for the photographer. He didn’t know what was being done to him when his mother made this murderous choice, he was scared. The world hears that Autism is too hard to handle, it’s too much, it’s too difficult, so much so, that a mother has to kill her son to avoid whatever it is that she felt was stopping her from living her life. This is the worlds view of Autism, many times their only view.

A twenty-two-year-old Autistic man was in the news recently. He’s in jail, having spent most of his time (three-years) in solitary confinement because an officer didn’t know how to correctly handle Autism.

I cried as I told these stories. I cried for young Landon, because of the pain and fear he felt at not being accepted and loved as a child should. He viewed the world differently, and in turn was treated differently, he was treated as if his life wasn’t worth living. The isolation he felt must have been excruciating. The despair he must have felt every day, living with a mother who didn’t see who he was, agonizing. The terror as his mom threw him over the bridge into freezing, icy water…No words.

I cried as I told Justin about Neli, the young Autistic man who was arrested because someone thought he was carrying a gun near a school. He reacted to a cop asking his name and handling him, so would many Autistic people. They’re overwhelmed and some don’t want to be touched. I feel for him as he sits in solitary confinement, how uncomfortable he must be, how he’s going without things that calm him. I wonder what he’s eating, because people with Autism have very special diets.

In these stories I hear, I wonder what Jeremiah would do. I worry about him.

I finished watching the Law & Order SVU episode, but shouldn’t have, I felt horrible afterwards. The teen is shot in the end, when there could have been an arrest made instead of death. This is what the world sees of Autism.

Autism Speaks isn’t much better. I used to go to their website, share the blue puzzle piece, and lit it up blue. But then I started listening to the adult’s who have Autism (or “are Autistic” as they like to be referred to) and many have strong opinions on Autism Speaks. In a miniscule nutshell, they don’t portray Autism in a positive light at all, it’s very negative.
It's not sad that my son has Autism

The general populace doesn’t understand Autism. They only know what the news tells them, and most of it isn’t good.

What’s not in the news?

Autistic people like my son, the ones who are loving and kind. Those people with Autism don’t make the news, unless they’re savants, and then only sometimes. Autistic people aren’t murderers or law-breakers, they aren’t people to be feared or locked away, or treated with shock therapy.

I wish the world knew Jeremiah. I wish they saw his smiles, his laugh, his sense of humor. I wish they could see him for who he is, not what he can’t do, or what he can’t say. I wish I didn’t have to fear what will happen to my son. The bullying, the stares, the misunderstanding.

I can’t live in fear, but it’s so hard to keep out the loud voices. The what-ifs. So, I try to push out the worries, and focus on how we will take care of Jeremiah. We will be here. Always. And as I protect my son, I will strive to share the positives of Autism. I will share with hospitals how to treat people with Autism, and hopefully that will meld into sharing with emergency personnel. And, I will write, write, write.


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special needs: how kids accept one another

special needs how kids accept one another_2
Photo courtesy of Knightsbridge Photography

You can listen to a recording of this post by scrolling to the end.
*****

Gotta love kids right? Since having a son with Autism, I’ve seen a whole new side of children I hadn’t seen before. I’ve worked with kids for years, I’ve been a teacher and a nanny, and only since watching kids and how they interact with Jeremiah did I gain a whole new perspective.

Kids accept each other, despite what obstacles stand in the way.

What obstacles might that be? Well, Jeremiah can’t talk, he doesn’t play with other kids (he’s only beginning to parallel play, meaning play next to other kids, not with them), he doesn’t usually smile at other kids, he doesn’t share what he’s playing with, and I will reiterate that first point again, he doesn’t talk. I feel that point is so important because our society in general doesn’t easily make friends with people who don’t talk, but not only doesn’t Jeremiah talk, he can’t communicate.

You would think even in a child’s world commonalities and similar interests would bring two kids together and they would want to be friends. This isn’t so with Jeremiah and his little friends. Jeremiah is usually in his own world, he’s slowly breaking free from it, but he doesn’t engage with these other children who consider him their friend.

Two years ago, when Jeremiah was three, he started preschool. A girl named Zoe quickly became his best friend. Zoe even called him her boyfriend. Jeremiah had no clue which is the most adorable part. Okay, there are more adorable parts. Zoe is a sweet girl, a tiny little thing, so cute, has leg braces, and uses a pint-sized wheel chair. Love her. And, she loves Jeremiah, they’re now in their third year of preschool together. I think it’s a lifelong friendship, maybe they’ll even get married. 😉 That’s just a little of the Mommy of a child with Autism hoping for the future.

The other day when I picked Jeremiah up from school, a boy in his class said good-bye to Jeremiah, then proceeded to tell me, “I know Jeremiah.” I was thrilled. This boy “knows” my son, my son who doesn’t talk, or reciprocate relationships. Well, he does reciprocate a little, he likes sitting by Miss Zoe in circle-time.
When special needs students are included

My brother-in-law, Rob, once said, “Kids and dogs.” This was after Jeremiah let him hold him during a time in Jeremiah’s life when only mom, dad, and Grandmas and Grandpas could hold him. We told Rob we couldn’t believe Jeremiah went to him, and then he made that statement, meaning that kids and dogs know people, they have intuition for who someone is.

These kids know Jeremiah and the sweet spirit he has. They like him for who he is, even if he can’t communicate, play swords, or if he eats the play dough. They accept him. They’re learning through being in class with special needs children that we are all unique and different in some way, and acceptance is part of everyday life.

No, not all kids give Jeremiah attention, but then not all kids are friends and get along with everyone, neither do adults. However, I’ve been surprised and pleased each time a child is aware of Jeremiah, says “Hi” to him, or tells me they like him. What joy it gives me to know that kids like my son, who happens to have Autism. Many of them will grow up with him, go through school with him, and hopefully stand by him if he’s ever bullied. I’m very grateful to these kids, kids who are only doing what is natural, before the rest of the world and it’s judgements get in the way.

Another example of this acceptance is in the picture at the top of this post. It’s Jeremiah and his sister. She’s now an amazing special needs advocate, compassionate with those who have special needs, and is in tune to their needs. I write more about her and her relationship with her brother in the post, Hurting Children CAN Develop Empathy.

Does your child with special needs have friends? Does this surprise you?

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