That Time I Called Amanda Palmer to Chat about Motherhood, Making Art, and More


I got to interview Amanda Palmer last week.

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Like the Amanda Palmer, whose music I’ve loved for years. Whose songs make me laugh, cry, sing along, and feel like a badass usually all at once. The Amanda Palmer whose book–The Art of Asking— I buy for my girlfriends when they’re having a tough time. The Amanda Palmer whose married to the Neil Gaiman…

It was amazing. And unexpected. And kind of perfect. And rather spontaneous, as these things go.

The interview confirmation came through while I was on the way to the airport to pick up my husband. I’d been solo parenting for 4 days, I was worn out from lack of sleep and battling Portland traffic, my kids were screaming in the back of the car, and then Amanda Palmer’s assistant emailed me: “How about tonight? In 2 hours?” Nearly crashing my car into the airport parking garage, I replied: “YES!”

How could I not?

So, while the boys danced around after dinner that night, I picked up the phone, and casually called Amanda Palmer like it was no big deal.

It was totally a big deal.

And it was a great call. We talked a lot about her new song, “A Mother’s Confession” and people’s reaction to it, which you can check out over at Parents.com, but my editor had to to cut some of the Q & A for space, so I’m printing the full interview here.

Long story short, AMFP is kicking ass at motherhood. Her baby (Ash) is 5 months old and AP’s still making art (she hinted at a new song about death called “Machete” coming out on her Patreon this week!), and although motherhood’s changed her, we can all still expect a whole out of the same fierce songwriting, music making, Amanda Palmering as before.

What does parenting look like logistically for you and Neil, since you’re both so busy?


For the first three months of Ash’s life, we didn’t do much. I stayed with him and took him everywhere I went. I felt very strongly about creating a fence around my birth and those early months, which are such a sacred, important time to be able to do nothing and bond. In those months, I was really excited to put my work down and just be a mom. My plan was to be a full time mom until I decided I needed help. This seemed like a more organic approach parenting then setting everything up in advance. When Ash was about 3.5 months old, I was craving getting back into the studio, and Neil was starting to feel overwhelmed with being my tag team partner. We both knew it was time to get a sitter. We don’t have a full-time nanny, but we have hired a local sitter who’s at home with us and the baby while we work.

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How is it going balancing work and motherhood?


The thing you want most as a parent is to never feel conflicted between your job and your child’s need. And that’s tricky since you never know what your child is going to need or what you’re going to need. I’m lucky because I have a job that lets me have a flexible schedule. What I love about my Patreon, as opposed to being on a record label, is that I can conceive a song or project in my own time. Since I have a subscribership, I can shelve it, put it out tomorrow, and as a working musician and mother it’s a godsend that I don’t have to commit to anything ever.

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Is parenthood harder than you expected?


That’s a hard question to answer because I had no expectations—good or bad—about it. I figured I’d be doing myself and my kid a disservice if I went into it with any expectations—either of all love and rainbows or that it would be hell. So, I worked hard not to expect anything. I didn’t buy baby books or go on the internet, and, although I had almost no exposure to babies, I figured I’d allow my instincts to kick in and I’d listen to the wisest voices in my environment.


The steepest learning curve for me was following the new organization of my mother-brain. It’s very disorienting, and I felt a bit like I’d been dropped on another planet without a map. Yes, I had instincts—but it was a challenge to have my parent and non-parent sides living together in my mind. Figuring out the new relationships with my child, with my partner, and myself were the hardest parts for me.


“A Mother’s Confession” is your first song about being a parent—were you surprised to write it?


I’ve always been a confessional song writer, it’s what I do. So, it didn’t surprise me that that was the song that wanted to come out. I never have any giant strategy for my career, or my songwriting in general. But if you take the ingredients of Amanda Palmer, it’s not a huge leap of imagination that something confessional about motherhood would come out. I’m at most interesting when I’m at my most vulnerable and confessional, but there were some lines that were hard to write.

That said, the song has given birth to such a wonderful and growing bunch of parent confessionals I’m glad I did it.


Stating our fears, mistakes, and anxieties can be a really wonderful way of communing with one another. I love that the internet, which can be so dark, can also be such a light and wonderful place.


What does the future hold for you and your family?


I have no idea, but I approach parenting like art making— plans are you enemy. It’s better when you react and listen, and I’ve spent my life getting really good at improvisation, so I feel like I can improvise life. I don’t think parenting is going to be any different.


Any other thoughts?


We can’t control anything anyway, so do what you can do that you love in the moments you have. Do your best, constantly forgive yourself, and go on your merry way.

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Click here to listen to “A Mother’s Confession,” read the lyrics and footnotes, and share your own parenting confessions and stories in the comments.


4 Tips for Teaching Life Skills at Home

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This post first appeared on Parents.com

Skills of daily living— like doing laundry, food prep and cooking, and self-care, to name a few— were things my 7-year-old autistic sonworked on for years in therapy. Despite the fact that he had rigorous programming with multiple steps for everything from how to wash his hands to how to prepare an apple for a snack, his gains were fairly slow. I think a large part of this was due to the rigid structure of the tasks—for example, he might miss a step, have to redo that step, and then grow frustrated at having to backtrack.

It was not until we took a year off therapy (through a series of unexpected life events), that we really started to see his interest in taking care of himself and his home increase dramatically. Here’s how we did it, and I think the same steps will help any child with special needs grow better at daily living skills.

Follow his or her interests.

My son has always loved coffee. Since he was a toddler, he’s stolen sips of my husband’s and my coffee, and he loves the smell and feel of unground beans. Slowly, this interest evolved into a desire to help with our morning coffee making. Now, every morning, he fills a pot with water and carries it to the stove. Then he helps me measure beans; we grind them together; we put them in the French press…and so on until the coffee is ready.

One reason I think he loves this ritual so much is because he’s genuinely interested in the smell, feel, touch, and taste of coffee. Following this interest has allowed us to practice many life skills—not that making coffee is something everyone needs to know, but measuring, following instructions, and other parts of the process translate across contexts.

Expand slowly—don’t push.

It’s important to have high expectations for kids with special needs, but it’s also important to let them develop in their own time. This is as true with teaching life skills as it is with everything else. So, certainly, it’s great to start something like potty training or teaching a child to brush his or her teeth at age 3, but realize that the child will do the skill independently when she or he is ready. That may take months or years. Be patient, and expand her life skills slowly.

Teach your child small skills—washing his hair, using a washcloth—and then add on to these over time. Patience wins the race here because it will save you and your child a lot of heartache and frustration.

Make it meaningul work.

One thing that we’ve found to be really important is to make the work my son does more than just busy work. We don’t practice sweeping, we actually sweep up messes. We don’t sort using sorting toys, we sort laundry. We don’t play with fake food, we actually make sandwiches. My son is quite literal-minded, so things like fake food were always frustrating, but the larger skill he was meant to learn—how to make a peanut butter and jelly sandwich, for instance—has always interested him. So, that’s the kind of work we do at home.

Give independent tasks eventually.

As he gets more comfortable with each skill, I slowly give my son more responsibility and independence. Instead of holding his hand while he loads the dishwasher, I now let him do it, one glass at a time. Because this is an organic move towards independence, rather than a forced march, we’ve even seen a lot of non-prompted, self-initiated skills in action. For example, if my son spills a glass of water, he grabs a rag to clean it up. Likewise, if he sees me doing laundry, he rushes over to help.

By following my son’s interests, working at his pace, giving him meaningful work, and allowing for independence, we’re saying to him: You can do this; the work you do matters to the running of our household; and you are an important member of our family.

Practicing daily living skills at home doesn’t have to be a chore (even when you’re doing chores!)— and it can be a great way to build a child with special need’s self-esteem, prepare him or her for future independent living, and make your household run more smoothly. Wins on all fronts!


Thoughts from an Autistic Parent Part 3: Ally Grace

Meet Ally Grace: Screen Shot 2016-02-04 at 8.10.54 PM

I got my autism diagnosis as an adult. I struggled a lot as a child and autism made so much sense when I read up in it. My 4 children have also been diagnosed with autism and my partner identifies as autistic. So, we are one happy autistic family. It is pretty wonderful to be living in this way with one another. We are an unschooling family. My children have never been to school at all. What this means for us is that my children have freedom to learn and live and be in the ways that suit them, and we are there (as parents) alongside them to help them with their pursuits and interests, and we provide opportunities that are non coerced. I have learned that this already radical notion is viewed as even more radical for autistic children. We already (as a society) don’t trust children to make good choices for themselves and tend to simply force them to follow the preferences of adults – and we trust autistic children even less. I think this is because we see them (socially speaking) as inherently in need of fixing, inherently damaged or incapable. So, it is really amazing for me to observe my kids in this kind of environment. It’s not often that autistic children are given that kind of life.

What are some of the challenges you face as an autistic parent?

The main challenges I face as an autistic parent are Internalized Ableism, and ableism from professionals who could yield power over me as a parent. Internalized Ableism for me, is having been treated as a damaged person and having grown up to believe that I was bad, that something was wrong with me. Of course, I know now that there is, and was, nothing wrong with me, I’m just autistic and function perfectly well as an autistic person. However, I believed for so long that there was something wrong with who I am, and I was treated that way since as early as my memory can go back to. And so there are a lot of lingering thoughts that follow me, and make me feel faulty when I act in autistic ways. This can get in the way of my life, because it is hard to feel shame for simple and automatic things that I do. Ableism from those in positions of power is a very big one too. Because I am a parent, people believing me incompetent or emotionally lacking, is dangerous in the sense that I could be assumed incapable of being a parent. And so, it feels very scary sometimes being an autistic parent, wondering whether one day my parenting will be seriously questioned due to discrimination and misunderstanding. I am always needing to choose between saying nothing so no one can discriminate, but then have my autistic ways misunderstood as something else (potentially something negative) and I am not able to then seek accommodations or support for being autistic – and disclosing that I am autistic, but then having people immediately suspicious that I am by default of being autistic, a poor parent. These are really nothing at all to do with autism itself and the way my brain works, but are all to do with perceptions and discriminatory attitudes toward autism.

What are some of the ways that being autistic helps you be a parent?

Well, I think that like all parents, my unique personal profile brings various benefits as well as challenges. For me, being autistic brings with it the ability to collate a lot of information in my memory. I am a great researcher, and I have loved to read since I learned how. I think that all the ways I parent my children, with the way I challenge that being autistic means innate deficit and the way I have challenged school education and also authoritative parenting methods – I think all of that was possible because of my ability to process lots of writing and lots of ideas. I am so grateful for that ability, and it has transformed the lives of my children. There is also the important fact that my children are autistic, and so having an autistic parent is very valuable. When I think of how Internalized Ableism feels, and when I remember how I was treated constantly as though there was something wrong with the very essence of me – these things really help me to steer away from those things, to help me to raise my children without passing on the shame that was given to me. I also think that being autistic has gifted me with the knowledge that you do not have to understand someone’s experiences or struggles to be compassionate and respectful, or to be a great parent. Autistics often grow up realizing that others don’t understand them, and getting mistreated as a result. But you shouldn’t need to understand to simply be kind, and I think my experience as being a part of a minority population of sorts, helped me to be a kind parent.

What do you want other parents to know about your family, yourself, or being an autistic parent?

I would love for other parents to question the common belief that being autistic means an inherent ‘something went wrong’, or ‘something is wrong’. That is so often the base assumption that underlies all further thought regarding autism and autistic people. Imagine a mindset where we DIDN’T think this way. This is how I live within my family unit every day, and the possibilities of this kind of acceptance are great to imagine. Often when I say this, people misunderstand and think I am expressing some kind of idea that life for my family and me is always perfect or ‘rainbows’ – but that isn’t what I am saying at all. Because we don’t view non-autistic people as inherently damaged, and we also don’t assume that means life is always perfect for them. The essence of what I invite by challenging the ‘something is wrong’ dialogue is to accept autistic people as a part of the diversity of human kind, without thinking being autistic means a kind of damage.

I know there’s a lot of negative things written about autistic parents, so how can we change that conversation?

Well, I think there is an assumed negative social vibe surrounding autism in itself – there is talk of pregnancy choices ‘causing’ autism, things like medications, vaccines, food, toxins. The language that describes autism is stuff like ‘epidemic’, ‘public health crisis’. It’s innately pathologised language; there is that base assumption that autistic people are damaged people and not capable of things we consider important – like love and emotions and connections to other people. So, really, to change the conversation involving autistic parents, we need to change the entire discourse surrounding autism. If we didn’t think autistic people were damaged, we wouldn’t t think anymore that they’d be poor parents would we? We’d simply see them the same way we see other parents. I also think that social assumptions about ‘good’ ways to connect and spend time play a part in this specific issue too. Because autistic parents may connect with their children in unique ways, and I believe that those ways should be respected. This does come down to respect for autism as an entity though.

What services might help autistic parents?

This is a tricky question, because of the power play regarding services for autistic parents. The possibility of having our children removed from our care, or of non-autistic people who don’t understand us interfering in the way we parent simply due to discrimination; is a big issue. So, I think any services would have to exist amidst a paradigm of neurodiversity, within a belief that being autistic is natural and okay and that doesn’t involve a need to be ‘fixed’. But one that also didn’t think that there were conditions to being accepted, and that support needs were perfectly okay. Like, while being accepted as our autistic selves, it’d need to be a full acceptance not just an acceptance when we seem ‘mostly normal’. I know that this support exists informally between autistic parents already – and I am involved in such networks already, mostly online – but formally, there would need to be a big thought shift in order for autistic parents to be supported respectfully. Especially autistic mothers, because I think autistic fathers in nuclear families have less expectations upon them socially (as fathers rather than mothers) and so being autistic as a father isn’t viewed with the same alarm that being an autistic mother can bring.

Is there anything else you’d like to add or share?

I think I would really love it if the experiences of autistic parents, and for me I am a parent raising autistic children also – I would love it if our experiences were allowed a niche. As it is, our experiences seem to be constantly lumped in with the experiences of non-autistic parents, and when that is the default assumption, we are going to be constantly seen as coming up short because we are so different in our approaches and ways. Among other autistic parents and among the experiences and stories of other autistic parents, I think our day-to-day lives would be able to exist much more strongly and would be able to be explained much more accurately.



Thoughts from an Autistic Parent Part 2: Melody Latimer

Meet Melody Latimer:


I’m the mother to 3 children and have been married coming up on 11 years. My older two boys are both autistic. My oldest was diagnosed in 2007, and my youngest and I were both diagnosed in 2008. While I had had my suspicions about being autistic, I actually received the diagnosis through an unlikely source. We were involved in a child services case that had been taken to court. Through a court ordered evaluation of the entire family, I received my diagnosis. While it was a relief, the diagnosis didn’t help much in terms of the actual court case. The child services case and court proceedings is actually what got me interested in advocacy, especially for disabled parents.


What are some of the challenges you face as an autistic parent?

Other than what I spoke about above, which we haven’t had any issues with since, my biggest challenges come around sensory overstimulation and a struggle with keeping up with household responsibilities. As a stay at home mom, the general expectation is that I’d do all the cooking, cleaning, grocery shopping, etc. Truth is, that’s not how our household is set up. When I get overwhelmed or anxious, I often need complete silence which can be hard with 3 kids, no matter their neurology. Luckily my husband is very accommodating and is happy to take over parenting duties when he gets home if I need a break.


What are some of the ways that being autistic helps you be a parent?

I tend to be highly observant of my surroundings. So when the kids are around, I can often anticipate their needs before they request them. While that’s not something my older two appreciate, my 18 mo old daughter seems grateful. As well, when it comes to parenting autistic kids, it makes it easier to understand where they’re coming from. I often use my experiences to talk to them as well as their teachers and therapists.



What do you want other parents to know about your family, yourself, or being an autistic parent?

Honestly, a friend of mine put it best. “I don’t see you as an autistic parent, but as a friend, who has has autism and happens to have kids.” This isn’t the same as person-first junk, but an understanding that I’m a parent much like any other. I’m trying to parent my kids and adult to the best of my ability. Ability and energy are a constant struggle. I put as much as I can into taking care of my children first. Then followed by taking care of myself. Then finally taking care of everything else. Their care and safety are the most important thing to me. As they get older and can do more for themselves, I find I have more time for all the things I really struggled with.



I know there’s a lot of negative things written about autistic parents, so how can we change that conversation?

I think more needs to be done to show how autistic parents actually parent. Not just anecdotal stories, but actually do some case studies on families. That just hasn’t happened. With the majority of actual literature out there says we’re innately negligent, that is what services providers are going to perpetuate. The other thing I would love is for more autistic parents to come out to tell their story. I tried several years ago to create a website to have those stories told. In the end, it was a struggle to get most autistic parents to blog about their experiences. I have continued to use the site, but mainly to talk about my family.



What services might help autistic parents?

I really think home cleaning services, professional organizers and possibly during newborn days a night doula or nanny. While I know many parents could use all of these things, when you’re talking about finite amounts of energy to exhaust, things that can be outsourced can make a lot of difference.



Is there anything else you’d like to add or share?

I think one of the things really missing from both the parent autism community and the autistic community is a place for autistic parents. We’re kind of scattered to the wind. There are a few places here and there where you can find other autistic parents, but those places are usually well hidden for fear of discrimination. While the discrimination won’t change, I feel like there should be more safe places for autistic parents, whether in local communities or online. I can only imagine how much easier this article would be to write if you had a place to start from rather than going to a non-autistic parent to find participants.



Thoughts from an Autistic Parent Part 1: Carol Greenburg

Meet Carol Greenburg:

I got my diagnosis of Asperger’s syndrome when I was 44 years old, about two years after my son was diagnosed with ASD at 31/2. I never had any kind of speech delay, but my speech pattern has always been mannered. I was consistently bullied during my childhood, by other children and occasionally even by adults. for using “big words.” By contrast, spoken language is my son’s most obvious challenge, though it is clear to most people who know him that he understands almost everything said to him. Presuming competence and comprehension is a good plan for communicating with all autistics, but I think it is particularly important in dealing with my son. His problem-solving skills are impressive so he almost always finds a way to get across his meaning, with or without spoken or written words. This year, if he is willing, I’m hoping he and I can work together on learning to use AAC (Assistive Augmentative Communication) technology. Although his speech and writing improves daily, I want to respect all avenues he might need to communicate even more fully. For my part, like most autistics the slightest stress can cause me to lose some degree of spoken or written language I can easily access when I’m in my comfort zone. I often say I’m always one siren or squealing tire away from temporarily losing all of my language, which can be dangerous especially here in NYC. My point is, despite the vast difference between our day-to-day uses of communication, in an emergency, either one of us could end up in a similar situation, unable to express our most basic needs or understand the simplest instructions.

What are some of the challenges you face as an autistic parent?

Competing Needs. We both experience constant sensory input, light seems brighter, noises seem louder, details that non-autistics are likely to miss stand out to us, etc. Our reactions to that input are different, though. The input physically hurts my ears, eyes, etc. so sometimes I react by dulling it with sunglasses or headphones, sometimes by removing myself from environments that overwhelm me. His way of coping with increased sensory input is different from mine. He does sometimes indicate that he wants out of the environment, but rarely as automatically as I do. What he often needs to do is plant himself right in the middle of the action and investigate it until he understands it. So if there’s a noisy fan, I prioritize blocking out the sound. I cover both ears, duck my head, and turn toward the wall. He , by contrast, is likelier to partially cup one ear, and circle the fan peering at it’s components until he figures out exactly where the noise is coming from, vocally imitating the sound all the while. Once he integrates the input, he sometimes seems better able to withstand it than I can. So the challenge is, when we react to different needs with different coping mechanisms, which way of coping wins out? Do we leave the area, which frustrates him, or do we stay longer so he can investigate, which causes me pain that can impede my ability to protect us from strangers’ sometimes hostile reactions to what they interpret as our odd behavior. It’s hard to negotiate a solution in the moment.

What are some of the ways that being autistic helps you be a parent?

Bluntly put, I think I’m more likely to “get it” than a non-autistic parent. My son and I have different experiences of this world that isn’t designed for our brains, but I do know exactly how it feels to be penalized for violating a social convention I don’t understand. I believe we both resent all the rot about our alleged lack of empathy, as scientists are only beginning to study the “intense mind” theory we’ve instinctively understood all along. I get the drowning sensation of other people’s emotions washing over me in waves I cannot process in real time. Most importantly though, I can serve as a role model in a general and in a specific way. My son and I have always been and will always be autistic. Even if I bought into the all the clamour for “a cure”, which I emphatically do not, that’s not going to happen in either of our lifetimes. So not only does he see me as an autistic comfortable in my own skin generally, but he watches carefully as I model various coping mechanisms and self-advocacy techniques. He is, of course, free to adapt the ones that work for him and toss aside the rest, which he has already made abundantly clear to me.

What do you want other parents to know about your family, yourself, or being an autistic parent?

The obviousness of autism des not directly translate into an individual autistics’ level of need. My son’s autism is pretty obvious to anyone who has had any contact with autistics. Mine is largely invisible, which is part of why I wasn’t diagnosed until middle-age and why I’ve had no access to services I needed and still need. My son does have access to high-quality educational and medical services on the upside, but on the downside he’s still occasionally exposed to so-called experts who, however good their intentions may be, can do more harm than good with misguided interventions. What all families of autistics need to know is that a constant, but courteous level of vigilance and communication with autism professionals and autistics, will increase their autistic family members’ options.

I know there’s a lot of negative things written about autistic parents, so how can we change that conversation? 

If you go to my Twitter feed, @aspieadvocate, you’ll see in my bio that I call myself a Fangirl of @stevesilberman’s New York Times bestseller and Samuel Johnson Award winning masterpiece, NeuroTribes. Full disclosure, my family’s story is in it, and many autistics and parents I know are in discussed in it too. But beyond my usual self-aggrandizement, and fondness for the author and many friends leaping about in the pages, NeuroTribes up-ends everything most experts thought they knew about autism. Whoever you are, whether you’ve spent most of your life around autistics or think you’ve never met one, (In which case you are mistaken. You have.) this diligently researched and beautifully written book has already irrevocably changed the autism conversation. If you lack internet access, politely demand that your nearest library order several copies, as there will be a waiting list for eager readers. If you have internet access, the minute you finish NeuroTribes, visit the websites and social media outlets for autistic-run organizations such as Autistic Self- Advocacy Network, and Autism Women’s Network, and Thinking Person’s Guide to Autism (for which I am one of a small, but merry band of Neurodiverse editors) All of these organizations can point you toward a cornucopia of autistic writers, visual artists, and musicians.

What services might help autistic parents?

I’ll start by describing my own greatest struggle. Autism professionals might refer this current struggle as “difficulty generalizing.” I am a non-attorney special education advocate, helping parents get appropriate special education services for my kid and theirs. I thought my skills as an education advocate would translate easily to Medicaid advocacy when it came time to apply for Medicaid, a service my son needs now, and especially in the fast-approaching years of transition to adulthood. I was right about his need, but so very wrong about my ability to get it for him without support. Just as my son needs one-to-one instruction for his education and therefore attends as private school with a one-to-one teacher student ratio, I need one-to-one support getting and keeping Medicaid services. I’m light years from achieving that goal Now, imagine I weren’t a formally educated, financially privileged white woman: if I can’t get anywhere in the Medicaid system what chance have autistics of color, or LGBT autistics and their kids? What if English weren’t my first language, or I covered my head for religious reasons? The gulf between person-first social services rhetoric and actual services is horrifying, and unless the government delivers on promises already made and presidential candidates from both parties start answering specific questions with detailed plans about everyone’s access to services, that gulf will widen.


Behavior Is Communication: A Lesson from My Autistic Son

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This originally appeared at Parents.com


Behavior is communication when it comes to autism, especially with a non-speaking child like my 7-year-old son Liam. As much as I try to honor this truth in our interactions, however, Liam’s behavior often seems confusing, and he’s still learning to use the other communication tools (like his iPad picture apps and RPM) that he needs to tell us what he’s thinking and feeling.

For example: Recently, he had some violent meltdowns. They lasted upwards of 30 minutes each, they were happening multiple times every day and in the middle of the night, and my husband and I couldn’t discern the cause.

It was heart-wrenching to watch Liam go from peaceful to raging in a matter of minutes. He would approach my husband or I, drop to the ground, dig his fingers into the back of our knees, and pull us towards him. His hands would fly to my hair, and he’d pull my face towards his, trying to push my face against his cheeks. When I’d ask him: “What’s wrong? How can I help?”, he’d scream fiercely, pinching me, trying to bite, and hitting his head with his hands. Frequently, he’d be so full of adrenaline, all my husband and I could do was evade his hands and teeth or hold him close so he didn’t hurt himself or someone else.

Desperate for answers and at our wit’s end after having tried our many other meltdown-prevention techniques, my husband and I reached out for support. Suspecting anxiety and sensory overload, we talked to Liam’s pediatrician about anti-anxiety medicine. We talked to other parents of autistic kids, our friends, our families, and Liam’s former therapists for advice or suggestions. My mother-in-law, who worked for years with autistic children, offered practical solutions that she used in her school (wrapping kids in blankets, providing deep pressure). Other friends shared tips on what they did with their neurotypical kids during night terrors or tantrums. Although none of these suggestions really worked, it was good to tell other people what was going on and it helped us brainstorm new ways to help Liam. Finally, during a phone call with my parents, my dad asked the game-changing question: “What about his 7-year-old molars?”

Thunderstruck, I realized that this was what Liam was communicating with his surge of meltdowns. Always a late teether, he was finally getting those painful back molars. When I reflected on it, he had all the other symptoms of teething—fever, irritability, lack of appetite— but I hadn’t put them together. By hitting his head, screaming in pain, pressing his cheek against mine, and grabbing the ice cream out of the freezer at mealtime, he had been trying to tell me his mouth hurt.

It was a revelation, and as soon as I got off the phone with my parents, I grabbed Liam’s YES/NO board and asked him “Does your mouth hurt?” A look of relief passed over his face, and he hit “YES” several times.

Tears of relief running down my face, I hugged him, gave him some pain reliever, put numbing gel on the inside of his cheeks, and let him have a huge bowl of ice cream at dinner that night. I was thrilled we’d figured out what he was trying to tell us and that he’d no longer be in terrible pain.

Now, one week later, Liam’s meltdowns have decreased markedly thanks both to us anticipating his teething pain and helping him alleviate it and also by starting some new medication to help with anxiety. Our house is more peaceful, and Liam is more focused and back to his affectionate, cheerful self.

I know that we’ll have more challenging moments in the future, and I know that what works for my son won’t work for all other autistic kids, but I think the takeaways here can help us all, no matter what the future holds or who our children are.

So, when you feel overwhelmed by an autistic child’s behavior, reach out to the people in your life. Talk to friends, family, professionals, and seek out the writing or opinions of other autistic people. Most likely, you’ll find support, suggestions for improving a situation, and perhaps even the answer to what your child is trying to communicate. Also, always remember that behavior is communication for an autistic child. There are reasons behind meltdowns, stimming, scripting, and other seeming quirks. Listening to this behavior can make everyone happier, healthier, and make life easier for us all.


Let’s Talk Autism: An Autistic Adult and a Mom to an Autistic Child Chat

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This originally appeared at Parents.com

Kids with autism—like my son Liam, a non-speaking 7-year-old on the spectrum—benefit when their parents engage in dialogue with autistic adults. But, too often, parents and autistic adults end up at odds with each other. To sum the conflict in very, very broad strokes: parents argue that autistic adults cannot possibly understand the struggles they’re facing when raising an autistic child, and parents also feel a stranger, even one with a similar neurology, can’t possibly know what’s best for their child. On the other side, autistic adults feel marginalized, hurt, and angry about being the subject of such attacks, they rankle at being told they need to be “cured,” and they argue that they can indeed offer insights into what might be best for autistic children, even if they’ve never met them. With that in mind, I was thrilled when Lydia Wayman, an autistic writer, speaker, and advocate, reached out to me, hoping we could bridge some of the distance between adults on the spectrum and parents to autistic kids.

JP: Why do you think there’s a disconnect between parents and autistic adults?

LW: One issue is that we seem to forget that we all have the same goal—happy kids who grow up to be fulfilled adults—but we approach the way to get there differently. Autistic adults feel like the typical parent just can’t understand what it’s like to grow up on the spectrum, and the parents feel like these strangers can’t possibly know the child like the parent does.

JP: Yes, and I think the distance also comes from the fear-mongering and the rhetoric of cure and cause. Also, many parents truly think they’re doing the best for their kids by getting all the recommended therapies—and it’s a blow to them when autistic adults challenge the notion that things like ABA might not be the best answer.

JP: How we can bridge that gap?

LW: We all have to realize that no one is going to give new ideas half a chance if the person representing them is screaming and name-calling. Instead, we need to form real relationships and move those tough conversations from the indelible Internet forum to sofas or more personal emails and messages.

JP: I agree. Real conversations—like this one—are how we bridge the gap. Also, by asking you to share your advice and experiences, I’m opening the doors for me to better parent Liam, and I’m (hopefully) validating your experiences.

LW: Absolutely! And I have found good friends in the parents of autistic kids.

JP: What are some things your parents did that helped you as you were growing up?

LW: I don’t think they went into parenting me with any ideas about how to parent. They went into it as, ‘Oh, hey, this is our kid, let’s get to know her and find out who she is and what she needs.’ I’ve always had really intense sensory issues the full-blown ‘meltdown in aisle 7’ kind of stuff. I ate about 10 foods through most of my childhood, and at some point they were basically told to starve me out. That never would’ve worked, and thank goodness, they knew that. My mom never said, ‘But all the other little girls…’ because I wasn’t other little girls.

JP: Do you have any other suggestions to help parents get through tough times?

LW: Just because something doesn’t make sense or seems wrong or contradictory, it might not be. I say words that contradict something I already said, and then I don’t have the language to explain how both things are true. Some kids will use scripted language that seems completely random—it’s not! Sensory issues also may not be obvious—I love the mall, but I hate one department store because the light hits the tiles so glaringly it hurts. A lot of times, it may not be easy for the parent to understand the problem, but for the kid, absent the understanding, validation goes a long way.

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Lydia Wayman (left) and Jamie Pacton (right)

LW: Is it hard to see us as the adults your kids will become?

JP: Absolutely not. It’s wonderful to have adults who can help me understand my child better. That said, I might have answered that question differently in the first year after Liam’s diagnosis. Then, I was reading books about recovery and desperate to do everything I could to fix him. Because that was the only trajectory I knew.

Eventually, books like Ido in Autismland and Emma Zurcher-Long’s writing shifted my views. I saw that there was a community Liam could join, and that was a beautiful thing.

LW: If you read my earliest writing, I was looking for treatments, too, and I’ve seen many parents and autistic adults whose perspectives really change with time. I think we have to respect that it’s a journey.

LW: What do you wish society understood about Liam?

JP: I want people to see his joy and understand his struggles. I want the world to know that he is smart, and that he understands how to be gentle and kind and engaged. But that not being able to communicate is awful and it makes him frustrated.

LW: For Liam, it sounds like people don’t realize how much he understands. For me, I can talk ’til I’m blue about what I know, but it took a long time and a lot of typing for my family to realize how much I know of the complexities of people around me. I really do get it.

LW: When you’re having a hard time understanding your son or when something is hard for him, what do you need most from autistic adults?

JP: I’m pretty good on the larger sweep of autism, neurodiversity, and acceptance, but I need lots of help with daily parenting strategies. And you and other autistic adults get it. You may not know Liam, but you understand some of his challenges.

LW: That’s so awesome that it’s helpful, because that’s what my autistic advocate pals and I love to do more than anything else! I want kids on the spectrum to grow up feeling like they’re an important member of their own families and the larger community. To feel like you’re a part of something, like your voice matters and you’re known and accepted—that’s the best thing for all of us!


How One Mom Started an Autism School—and How You Can, Too


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This originally appeared on Parents.com

Starting an autism school has long been a dream of mine—especially since my ​non-speaking son, Liam, aged out of his preschool program. I want to build a place where Liam can learn with his autistic peers, be nurtured for who he is, and I love the idea of integrated schools, where autism professionals and teachers work together. Like many other parents, I spend much of my time running my son from one therapy or activity to the next, so I also love the idea of having all Liam’s services and enrichments—OT, speech, assisted communication, ABA, art, academics, fitness, and more—under one roof.

With this in mind, I was thrilled when my husband’s job took us to the Portland, Oregon area for a year. Portland is home to Victory Academy, a fantastic year-round, all-autism school. Although Liam doesn’t attend Victory, I took a tour of the school and chatted with Tricia Hasbrook, co-founder and director, about what it takes to build an excellent school for kids on the spectrum. Tricia’s got a master’s in English and one in teaching. She worked in a public school district as a literacy coach and language arts teacher for 10 years before she founded Victory. Her inspiration came from A.J., her son with autism, who’s now 15 (the two are pictured above).

“I wasn’t disillusioned with people or therapies,” Hasbrook says. “But I wanted an integrated model of learning for A.J.. I wanted a school with teachers targeted at autism.”

And that’s what she set out to build. Early in 2009, Hasbrook convinced her like-minded friend and fellow mom to a child on the spectrum, Thea Schreiber, to join her. They sat down at Schreiber’s kitchen table and began to discuss finances, staff, therapies, and a mission statement. Hasbrook tackled the 5013c paperwork, which would grant them nonprofit status, and they began fundraising. By the fall of 2009, Victory had opened with eight students. Now 60 kids attend Victory five days a week, year round at a beautiful new school, which houses a therapy wing, nine classrooms, a gym, and outdoor space. It was designed to help kids with autism specifically, meaning attention was paid to acoustics, the hallways are wide enough for kids to ride scooters or bikes through them, and each room has different lighting, faucets, and other fixtures, to help prepare kids for the wide variety of these things they’ll have to use out in the “real” world.

Hasbrook offered these tips if you’re trying to build a school like Victory:

Have a clear vision and mission.

Know what you want, and research similar schools. Hasbrook notes that there are so many more autism schools open now than when she got started, and she suggests researching them so you can clarify the overall purpose of your school and figure out the daily logistics of running it.

Find like-minded people.

Volunteers are crucial to the success of schools like Victory, as are parents who can contribute in different ways (indeed, Victory asks parents at the time of application to explain how they can contribute to the school). Hasbrook notes that Victory has been extremely lucky in finding families that have helped the school grow, and her partnership with Schreiber and their shared vision has also been the strong foundation that’s helped Victory thrive.

Secure nonprofit status as quickly as possible.

Getting nonprofit status helps ease some of the tuition burden on parents, and it allows your school to apply for grants and other aid. Hasbrook suggests getting started on it ASAP, as it’s a laborious process with a steep learning curve.

Look for a space that will work first, and then build your ideal space.

Victory didn’t have its own building in 2009. In fact, at first it was housed in one room, within another school. After that, it took over the classrooms left when another small private school closed. Finally, after six years of making it work in borrowed spaces, Victory Academy moved into its perfect school space. It took time to get the right space, but Hasbrook says it was well worth the wait.

Know there will be challenges, but keep going.

Certainly, Hasbrook, Schreiber, and the Victory team have faced challenges along the way—they almost didn’t get off the ground because of funding—but now, they work to find creative ways to raise money so tuition doesn’t soar, and they’re constantly working to keep the quality of instruction high while facing tremendous student growth.

See more positives than negatives.

Although there are challenges—kids having tough days, administrative hurdles, staffing issues—Hasbrook makes a point to see more positives than negatives every day. “It can be crazy,” she says. “But it’s always fun, and I love the kids. Going to work is never a chore for me.”

So, dream big. If there isn’t a good school available near you for your child on the spectrum, perhaps you can build one. If the success and happiness of the kids at Victory is any indication, it’s a dream well worth pursuing.



My Neighbor’s Kind Gesture Renewed My Faith in Autism Acceptance

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This originally appeared on Parents.com.

Autism acceptance took a hit last month when the news broke that two couples in Sunnyvale, CA, were suing their former neighbors because they claimed the neighbor’s 11-year-old son with ASD was a “public nuisance.” There’s been a lot of back-and-forth on this story in the media since then, but the prevailing conversation is one of fear, ignorance, and prejudice aimed at kids with autism and their families. Even some of the responses to my fellow blogger, Ellen Seidman’s, call for tolerance and doing no harm shocked me. What happened to a little bit of neighborly kindness and compassion? What happened to some empathy from the community? Was that too much to ask?

My heart ached as I considered the “public nuisance” story and wondered how my neighbors saw Liam, my 7-year-old, non-speaking son on the spectrum, and our family. We just moved into a large apartment complex this summer, and the new environment, with its accompanying sensory challenges, has caused my son a lot of stress. He’s not sleeping much, he’s frustrated and screaming often, and we’re struggling a bit as a family to adjust to it all.

But then something happened last Sunday that restored my faith in my neighbors and put my worries to rest.

My downstairs neighbor—an elderly woman whose door we pass every time we go to the car; who sees us in the laughing moments, the moments of whirling-screaming tantrum; who sees me as I flee to the gym at night; whom we wave to as often as possible, but whose name I didn’t know— called to me from her screen door as we passed on the way back from the park and store. Liam’s arm was linked through mine, and together we waited as our neighbor shuffled through her apartment. She returned a few minutes later with an enormous, exuberant bouquet of flowers.

For me. Because, in her words, “You’re such a good mother, and I see how much you’re doing to help your beautiful children.”

I took the flowers, tears rolling down my cheeks, thanked her, introduced us all, said goodbye, and went upstairs. When I ran into her again later, and tried to explain how utterly undone I was by her gesture, how grateful I was for her compassion, and how wonderful it was to gift us with a bit of unexpected beauty, she just smiled at me.

“We’re all a community here,” she said. “You can’t do this alone, and I’m happy to connect with another neighbor who’s a special education teacher. We are here to help if you need it.”

Needless to say, I was undone all over again, and my heart was full. This is how you can be a good neighbor to a child with autism and his or her family. See them as humans. Ask them if they need help. Offer them kindness. Listen to them. Try to understand their challenges. Accept them in spite of those challenges.

Believe me, your kindness will go a long way.

Jamie Pacton lives near Portland where she drinks loads of coffee, dreams of sailing, and enjoys each day with her husband and two sons. Find her at www.jamiepacton.comFacebook (Jamie Pacton), and Twitter @jamiepacton.


Here’s Why I Hope

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This originally appeared on Parents.com

Hope may be “the thing with feathers,” as Emily Dickinson writes in one of my favorite poems, but I know it’s not always easy to feel optimistic when raising a child with special needs. As a mom to a non-speaking 7-year-old with autism whom I refuse to label as low/high functioning, I sometimes get comments from readers like, “She wouldn’t be so positive if she really knew the challenges of raising a child with autism…”

But I do get it. My son has a lot of behaviors that are dangerous, troubling, and downright scary. I don’t write about them in detail, because that doesn’t seem fair to him and because I’m trying to preserve some parts of our privacy.

It’s not that I’m trying to silence the suffering of other parents; it’s not that I haven’t bandaged my own wounds while sobbing; it’s not that I don’t lie awake some nights, my stomach twisted into knots of worry. It’s just that I want a narrative of hope to prevail in this conversation about autism.

Easier said than done on some days, I know—but here’s why I hope:

My son is young; his potential is limitless.

John Elder Robinson, writer, father, and Aspergian, wrote something on his Psychology Today blog recently that keeps coming back to me. It’s a good reminder of my son’s potential, and I return to it on days when hope needs a little boost: “Unfortunately the gift side [of autism] often does not show up till the teen years, and sometimes not till adulthood. That’s how it was for me and many other autistics I know. So parents who say their little kids “have no gifts” are in my opinion making a rather premature and dangerous judgment.”

Problem behaviors—biting, hitting, self-injury, screaming— are often expressions of frustration over lack of communication, and addressing that frustration makes life better for everyone.

These sorts of violent, troubling behaviors don’t come from nowhere. For my son and many kids like him, they reflect struggles to communicate. When I shifted my attitude towards trying to understand the root of my son’s frustration and addressing that, rather than just extinguishing the problem behavior, I saw great changes that made me hope. Fostering communication is the answer to so, so many of autism’s challenges.

Non-speaking children and adults with autism are finding their voices.

My spirits are always lifted when I see non-speaking kids, teens, and adults finding their voices using communication methods like RPM. Watching videos like these or reading blogs like “Emma’s Hope Book” remind me that these children’s struggle with silence is like my son’s, and in their triumph, I see echoes of his future success. And that makes me want to work all the harder to help him find his own voice.

Autism acceptance is growing.

Although there seems like a lot of negativity surrounding autism, acceptance is growing. As people learn more about neurodiversity, listen to people on the spectrum, and communities do more to support kids and adults with autism, I feel hope for my son’s future.

Hoping feels better than despairing, and I choose joy as often as I can.

“Hope takes practice,” as my friend Lyn Jones, says. Like all exercise, however, it gets easier the more you do it.

We don’t know the future.

Kids with autism surprise their parents, peers, and professionals all the time. My son’s doing things at age 7 that seemed impossible four years ago when he got his diagnosis. When I worry to too much about my son’s future, I revisit the stories and writings of kids with autism whose futures are brighter than anyone anticipated, like Ido Kedar’s Ido in Autismland, or Tito Mukhopadhyay’s poetry.

And sometimes, when all that fails me, I recite the first stanza of Emily Dickinson’s poem, like a mantra, until the storm has passed.

“Hope” is the thing with feathers –

That perches in the soul –

And sings the tune without the words –

And never stops – at all –

Never stop hoping, my friends. Never. Stop. Hoping. There is always light beyond the darkness.