April 30, 2013

Are You Listening?

I had been sipping tea with honey all day, hoping my voice would hold out just long enough. I parked in the now familiar underground lot of the San Francisco JCC and rode the elevator to the second floor. I was nervous, but less than I was during that same ride just a few weeks prior.

It was our second and final rehearsal before show day.

I share a lot on this blog. I don't hold much back, wanting to share what it is really like to be a parent. To raise two children, one with special needs. To bridge the gap between typical and different, between my dreams of motherhood and my reality. I may spare you some of the gory details, or reserve some of my uglier moments for the therapist's office, but I don't find it difficult to be honest here.

There is something different about saying the words out loud.

There is no screen between my words and their recipients, no safety net of moderated comments, no understanding whether a typed "LOL" meant that the reader actually laughed out loud or was just being nice. My blog readers are mostly in the same boat, raising their own special needs children. (Or they are my family and friends and have to be nice to me.) But the audience? They could be anybody.

Saying the words, having them leave my heart and make their way directly to people's ears, people who may not have the slightest inkling what I'm talking about, adds something to them. It gives them life. More specifically, it gives them a face: mine. The feedback is instant and the experience is powerful.

Listening to other peoples' stories is even more powerful.

I've learned something listening to the essays that will be read on mother's day. My pain is not the only pain. The gap between dreams and reality exists for all moms. Our laughter comes from the same slightly dark (and often dusty) place. And while we may not experience the same failures and triumphs, we all have something to learn from each other's stories.

First, we need to listen.

Click here for more information or to buy tickets to the 2013 Listen To Your Mother San Francisco performance.

April 26, 2013

Choosing an AAC Device: Part 2

This post is way overdue. We have finally completed our AAC evaluation, selected a device and app, and have had two working sessions with an AAC specialist. Things are going well, though that will be the next post. Today, I want to tell you about the apps and devices we looked at during the evaluation process, and some quick notes on each.

Like I did in Part I of this series, I'll divide these up into stand alone devices and apps. This is by no means a comprehensive list of AAC apps and devices or their features. Many devices and apps have cool features including visual scenes (photos of rooms or places that can then have "hot spots" attached), but we didn't evaluate those features. I hope this will help others get started on their AAC journey. 


1. Accent 700 (Prentke Romich Company-PRC):  This was my overall favorite of the stand-alone devices. I liked the size and the custom hardware was sturdy, and included a built-in handle. For those of you familiar with devices like the Springboard Lite and Vantage Lite which were recently discontinued, this is the device that replaced them. 

This is one of several devices based on the Unity language. "Unity focuses on frequently used words. Research has shown that approximately 400 frequently used words make up more than 75% of our speech, regardless of age, gender, or background." I liked the research that went into building this software. I also liked that the device uses motor patterns that can be learned in addition to icon recognition. We thought Moe would benefit from that.

There were a few downsides. First, it seems less intuitive to pick up - not for the learner (Moe), but for me and others that will be teaching Moe. It isn't based on the folder-like model I've seen with other devices and even icon based PECS.

At almost $5,000, it is also very expensive. But as I discussed last time, the devices are often covered by insurance and come with a high level of customer support from the company.

2. NOVA chat 5, 7, and 10 (Saltillo Corporation): This series of devices is based on customized Android hardware, with a variety of screen sizes (five, seven and ten inch screens). I was not able to see final hardware, as the sales rep only had a prototype device. The kick stand for keeping the device upright on the table was quite flimsy, but I do believe this was because it was only a prototype. Otherwise, the hardware was robust. They run from about $2,400-$3,900 and can be purchased here.

These devices use their Chat software, that includes "thousands of SymbolStix™ symbols, and PCS™ symbols can be added." There are several chat files that have different numbers of symbols, from as few as 4 up to, I believe, 80 on a single page. Moe was initially introduced to MultiChat 15, a 15-location vocabulary, designed for school-aged individuals with emerging language skills. Given frequent clinician modeling, cueing, and hand-under-hand prompting, Moe activated pictures on the dynamic display screen to compose short sentences, such as “I want” + “to drink” + “water”, “I want” + “to eat” + “ gummy”, and “I want” + “to eat” + snack” + “chips”.

Unlike the Unity system, these icons shrink as more are added to the page, removing the motor planning benefit (but making it easier to see when there are fewer icons). This is a nice device, but I thought Moe would benefit from the motor planning aspect of something like the Unity language.


Note: Many, though not all, of these are available on Android, Kindle, or other devices. We reviewed these all on an iPad.

1. TouchChatHD communication software (Silver Kite):  This was the first app we reviewed with the AAC specialist. It is a highly customizable app, which was nice but perhaps also what didn't work for me. It had too many features, and felt a bit overwhelming. One nice feature was that the button sensitivity can be adjusted. Because Moe tends to hit buttons multiple times, we made it so he had to press and hold the button for a short time to make it talk. This app also allows you to import photos, so we took pictures with the device and immediately imported them to the app. It was fairly easily customizable within the app itself.

This app is hierarchical in nature, where you press one button, say "eat," and then it navigates to another page with more choices, in this case specific foods. For our evaluation, we customized a 12 icon page, where each preferred item icon navigated to another page with two choices. You could add more choices, of course, "eat" leading to categories like "veggies," "fruits" and "snacks" with specific choices under there. Moe needed maximum modeling and prompting to successfully use this app.

The app costs $150.

2. Proloquo2Go communication software (AssistiveWare): Many professionals and schools are familiar with this app, so I think it becomes a de facto choice for a lot of students. It has many similar features to the TouchChat, in terms of customization features and easy customizability within the app. It also allows free and predictive typing. It uses the same symbol set as the NovaChat devices. By the time we started talking about Proloquo2Go, I had already decided I wanted an app with a motor planning component, so we didn't evaluate this app.

The app costs $190.

3. TapToTalk: This was the first app I evaluated. I looked at this one on my own when a representative from the company contacted me. This is a relatively inexpensive app, with a free lite version and about $100 for a year or $180 lifetime. The app is available on many devices, including Android and Kindle Fire. I used an iPad. 

This is a highly customizable app that comes with many photos built-in, but user photos can also be imported. I liked that you could name an icon anything, and it would convert it to speech. So if, for example, I called my car "Love Bug," the app would say that rather than just "car." I could make my picture be "mom" or "mommy" or "hey lady" or whatever. The SymbolStix library can also be added.

This is a hierarchical format as well, with pictures "jumping" to other pictures to eventual choices. So you could say "go," then "car" then "restaurant" then "McDonalds," or however you set it up. I'm not entirely sure this is how people actually think, though it is intuitive for those of us who already communicate, so it is a less steep learning curve for instructors.

There was one huge downside to this app, and that is that all the customization is done on a computer, then had to be synced to the app. Major pain, and completely impractical if you didn't have a WiFi connection at the time. This did however, allow you to create your albums and share them across many devices (at no extra charge).

Free trial version,$100/year or $180 lifetime.

4.  LAMP Words For Life communication software (Center for Autism): LAMP Words For Life is based on Prentke Romich Company’s (PRC) Unity language system and Language Acquisition through Motor Planning (LAMP), a therapeutic approach that uses consistent motor planning for access to vocabulary. 

Like many of the apps, it can grow with Moe as his language skills advance. The app includes three vocabularies to support language development: 1-Hit is an introductory level vocabulary; Transition adds additional vocabulary; and Full Vocabulary includes over 3000 words and allows customization. 

The app features one motor planning per word that allows the development of quick communication. Even as we add more words, the icons Moe has already learned will always be in the exact same place. Vocabulary Builder shows targeted words to limit distractions and increase success, and Word Finder allows for locating a specific word. 

The downside to this app is that it is purely symbol based, and doesn't use photos (at least in the beginning stages; I think pictures can be imported when we get to the customizable screens). Like the Unity app, it is based on the idea of Core and Fringe language. This can be more complicated for teachers (read: me) to learn, but I liked that the symbols are pre-defined based on research. Because we start only with core language, there is very little customization in the early stages of learning. To me, this means less tinkering and fewer ways for me to screw it up.

This is the app we ultimately chose, and I'll describe how we are using it in Part 3 of this series.

App is $300, though I got it for $150 on world autism awareness day!

6. Speak For Yourself: We took a brief look at SFY, an app that is also based on motor planning and the idea of core and fringe language. I liked the look and feel of the LAMP app a bit better, so ultimately chose that one, but this would have been a good alternative. I know several people who use this app with success, and they have great tips for general AAC learning on their Facebook page. 

The app costs about $200.

Remember, there is no one best AAC app. If you think AAC is right for you or your child, request an AAC evaluation at school or find an SLP who has experience with many AAC apps. Try them out (codes are often available for 30 day trials of apps), look at the websites, and think about what features might be most beneficial to the user. You might decide to go with what your SLP has the most experience with, what the other kids at school use, or what most resembles the type of communication your child is already doing. Does he read? Does she use PECS? Does he understand icons or does he need photos?

I look forward to sharing more of our experiences with you along the way!

April 22, 2013

Travels with Jelly

I just got back from a weekend away. My beautiful cousin Anna was getting married. I knew it would be difficult for us to travel with Moe, but I really wanted to go. I don't get to see my extended family often, but I love my cousins. I have so many happy childhood memories playing with them, and I want to give my kids the opportunity to know their cousins.

So we decided to make it a girls weekend. 

Jelly and I traveled together to San Diego. She did great. She was such a trooper going from car to shuttle bus and waiting in long security lines. She loved the airplane ride and seeing her cousins and especially Grandma and Grandpa. Jelly even had a special role in the wedding as ring bearer.

It wasn't easy. Jelly was still recovering from a bad cold, and woke up coughing quite a bit. She didn't sleep well in the hotel, and spent much of Sunday trying to figure out how to get a nap. We spent a couple hours with three (soon to be four!) of my favorite people, a good friend who I've known since I was 12 years old, her husband and son. The plan was for Jelly to play with them, show off all her cuteness and sass, before we headed back to the airport. The poor girl was so tired she fell asleep on the booth at the restaurant.

There was a lot of crying.

We still had a great time. And despite the lack of sleep, and despite Jelly's cold, I was remarkably unstressed. I had more patience for her never ending chatter, the constant "whywhywhy" questions that usually drive me over the edge. I had fun with my girl.

Maybe it was because I just had one child to watch. Maybe it was because we were away from the everyday responsibilities of home, or because I had Grandma and Grandpa and lots of aunts and uncles and cousins (thanks Sami and Stella!) to help make sure my girl was having so much fun.

But I can't deny that it was also because Moe wasn't there. 

On the one hand, having a child with challenging behaviors has helped me be more relaxed about other things. Things from this weekend with Jelly that would probably have put other parents over the edge, were nothing to me. She puked all over the sheets and we had to have housekeeping change the bed at 10pm? It's fine. She woke up at 2am on Sunday morning, and never fell back asleep? I survive on very little sleep most days. This trip was easy.

But it also made me realize how much it takes out of me to be Moe's mom. I love that boy with all my heart, but fresh scratches on my arm remind me how tense things can be at home. The clenched teeth and furrowed brow and constant vigilance are back. And while I'm enjoying a few extra snuggles from Moe today, I am also deep into the "what could have been" thinking that I try so hard to avoid.

Still, I am thankful for the break, grateful for my husband who encouraged me to take Jelly so we could get away and introduce her to the family. I'm looking forward to the day when we can bring Moe too. 

April 10, 2013


"You were strangers in the land of Egypt."

Passover was just a couple weeks ago, and I am always struck by the way we celebrate the exodus from Egypt. During the seder, we eat foods that remind us of the hardships suffered when the Jews were slaves under Pharoah. We do this not just as a recreation, but because we too were slaves. Not our ancestors, not people thousands of years ago, but us. We were there.

It is like this when you have children. I've heard it said that being a mother is like having your heart walk around outside of your body. When Jelly goes to school, she takes a piece of me with her. I am only whole again when she returns.

Jelly wears her heart on her sleeve. When she cries, or is frustrated, when she talks about her friends and what she's doing at school, my emotions go with her. As she grows, and faces the trials and tribulations of childhood, I will ache and rejoice with her; not only because I've felt those same things before but because I am her, and she is me.

When Moe is frustrated or anxious, when he is unable to communicate, I am frustrated too. I feel his struggle as if it were my own. When he smiles at me, or holds my hand, my heart is lifted. When Moe needed stitches, I felt his fear. I felt his pain as the needle pierced his skin. I knew I couldn't take the pain from him, but I could share it.

But with Moe, it is complicated. I don't really know how he experiences the world. When he flicks his fingers in front of his eyes, what does he see? What is it like when he struggles to speak? How does he feel when he is so unable to regulate his body that he slams himself into the wall, or comes full force at me while biting a pillow?

How does the world look to him? Sound to him?

I may never know.

Even though our brains are wired differently, he is still my son, a part of me.

He is my heart.

This post was inspired by the novel Afterwards by Rosamund Lupton. After witnessing her children's school set ablaze, Grace attempts to find the arsonist as her teenage daughter lies in a coma. Join From Left to Write on April 11 as we discuss Afterwards. As a member, I received a copy of the book for review purposes.

April 9, 2013

Why We Still Need Awareness

There has been a move in the autism community to move beyond awareness toward acceptance. People are already aware, they say. It's time to take things to the next level.

I'm not sure.

It's not that I don't want acceptance. Of course I do. But I don't think we're ready for it. Why?

Because I still get emails on our local mom's group mailing lists talking about the dangers of vaccines and seeking recommendations for doctors who will agree not to vaccinate.

Because I still walk into stores that sell books called "Stop Autism Now!" that claim that coconut oil can cure everything from autism to Alzheimer's.

Because parents still put their children at risk by trying to cure them with hyperbaric oxygen treatments, bleach enemas, and chelation. And there are doctors willing to perform these (and take their parents' money to do so).

Because I still see Facebook comments with statements like "In my day, we didn't call it a behavior disorder, we called it being a spoiled brat."

Because I still read so many false claims about autism, associating the disorder with violence.

Because I still see people calling autism a "disease."

Because people think only boys have autism.

Because I still read comments on blogs like this one: "
I understand Autism, but just because a child doesn't have Autism, doesn't mean they're a perfect angel & it doesn't mean their parents 'have it easy.' At least you get help & support through various programs. Your child will get special treatment just because of an Autism diagnosis, mine won't. Like you said, the grass is always greener..."

Because school districts still do not provide appropriate educational opportunities for kids like Moe.

Because even special education teachers don't understand that behavior is communication.

Because people have no idea that there are many, many smart adults with autism who can speak/write/communicate and advocate for themselves. And do it everyday.

Because people think that autism looks either like the geeky genius or the completely withdrawn child. Moe is neither of these.

Because people assume that because someone can't talk, he or she can't understand.

Saying that we are ready for acceptance is like saying that because Obama was elected, we are living in a post-racial world. That because we have "civil unions" and "domestic partnerships," there is equality for the same sex couples. That because there are women in positions of leadership in corporate America, that we have gender equality in the workplace.

We need to be aware of the many truths of autism before we can get to acceptance of all people on the spectrum.

I want acceptance. But I'm afraid we have a long way to go.

April 5, 2013

Mourning Autism, or Why Being Autistic is Not the Same as Being Gay

I will start this post with a disclaimer. I am not autistic and I am not gay. I speak here, as I always do, as a parent and a reasonably intelligent and compassionate human being.

This month is Autism Awareness Month (or as many are hoping to move toward, Autism Acceptance Month). As part of that, I read this very well done piece called The Awareness I Want to See, written by an autistic person. The main idea is that while there may be a mourning period for parents after their child is diagnosed with autism, and that it is perhaps a reasonable path to acceptance, wouldn't it be better if parents didn't have to mourn? Wouldn't it be better if that diagnosis didn't "sound like a death sentence or painful disease?"

The author compares the parental experience of having a child diagnosed to the experience of learning a child is gay - particularly during a time when homosexuality was more stigmatizing than it may be today. And in so many ways, this is a good analogy. A parent, even now, might go through a period of grief at their child not being who they expected them to be. A father might be worried that things will be more difficult for his son - that he might be bullied or that his intelligence won't be noticed because he seems different. A mother might worry that her daughter will never marry or give her grandchildren. Their vision of a future is changed.

There was even a time when homosexuality was in the DSM (Diagnostic and Statistical Manual of Mental Disorders). Being gay was seen as a mental disorder. An updated version of the same manual is used to diagnose autism today.

Thinking about autism in this way paves the way for autism advocacy to take more of a PFLAG (Parents, Families and Friends of Lesbians and Gays) model. This model allows autistic people to lead the conversation, advocating for themselves with allies and supporters following their lead.

Unfortunately, this is an imperfect analogy, primarily because homosexuality is not a disability.

While this analogy does illustrate that feelings of grief and loss do come, in large part, from social construct, it also implies that we can eliminate these feelings with little more than a change in attitude. This is not the case. My son is disabled. His challenges are numerous and varied, and no amount of attitude shift or even reasonable accommodation, will make him a safe, independent, child (at least as much as any other six year old).

This analogy also implies that no real loss occurs. Yes, a parent may see having a gay child as being a loss. There may have been a time (and sadly, in parts of this country and the world, this is still true) when coming out as gay meant an end to career and social life. We are still fighting for basic rights like the right to get married. But these losses are social constructs. There is no reason, other than humanly created norms, for someone who is gay to be unable to marry, have a job, or carry on a safe, independent existence.

I love Moe and am grateful for his health and happiness. But his disability has caused real loss. We cannot, for example, reasonably travel with him. And while it is difficult to see friends' vacation photos on Facebook, I'm not just jealous because we can't ski Tahoe this year. Not being able to travel means that we do not get to see family and friends that live in other parts of the country. Since my brother died, my cousins are the closest family of my generation. I miss them. They are also family members who could reasonably be guardians for Moe and Jelly if anything happened to us, except they don't know Moe and Jelly.

I have lost close friendships, because since Moe was two years old, my schedule has been centered around his needs. I have lost career opportunities because I have had to stay out of work longer than I expected. I have lost the opportunity to be more involved in Jelly's preschool years. I am not complaining; it is my job as a parent to make whatever sacrifices are necessary to give my children what they need. But there have been real and significant losses.

I still find value in the analogy. The Autism Self-Advocacy Network says "nothing about us without us," and I think this is important to remember. Moe is not able to participate yet in making decisions about his care or education, but I do my best to inform him of what we're doing and to listen to his cues as to what is or isn't working. I try to presume competence and understanding and make it our primary goal to give him tools to communicate. Perhaps someday he will be able to advocate for himself, and when he is able to, I will hand over the reins with pride.

For now, I try to be thankful for what I have. I make new dreams and accommodate my life to fit Moe's. But I will not deny that our family has lost deeply and I grieve that loss. And I will likely continue to do so for a very long time.

April 1, 2013

Becoming Special

About a week after my son was born, some friends came to meet the new baby. Carla, who also had an infant, made herself comfortable in an armchair, threw a blanket over her shoulder and started nursing. She looked at me, smiled blissfully, and said “wouldn’t you just jump in front of a bus for him?”

I didn’t want to admit how tired and frazzled I was. Everything, including that “natural” act of nursing had been a challenge. While not exactly opposed to being a mother, I hadn’t quite warmed up to the whole thing. I nodded my head and said something along the lines of “uh huh.”

My transition into the joys of motherhood took a little while. But I did adjust. I learned how to click the infant carrier out of the car and into the stroller. I wore my baby to the grocery store and stocked the freezer with homemade organic purees. My son and I went to play dates and music classes and at four months to the day we began sleep training. And soon enough, I loved my chubby baby with jump-in-front-of-a-bus ferocity. 

And then, just about the time that I was comfortable enough in my role as “mother” to have a second child - six weeks after that second child was born, in fact - a woman with a white coat and distinct Canadian accent looked at me and said “your son has autism.”

Once again I found myself not quite sure how to feel. Only this time, I had no time to get used to the idea of being a special needs parent; there was no “transition” about it. While there was no denying the diagnosis—the signs had been building for months—I couldn’t quite make sense of the words I had just heard.

There is an essay often given to parents of newly diagnosed special needs kids called “Welcome to Holland.” In the essay, you prepare for a trip to Italy. You read up on the culture, pack the right clothes, even learn some of the language. You board the plane. And when you disembark...you are in Holland. Holland is a beautiful place, with windmills and tulips and lovely people. But you were supposed to go to Italy. Pasta! Gelato! Buongiorno! And now you see only wooden shoes and salted herring.

After Moe's diagnosis, my son seemed a stranger to me. Though people told me “he’s the same child he was before the diagnosis,” it certainly didn’t feel that way. In a single instant, he went from a happy, mellow toddler with some speech delays to a kid whose entire future was uncertain. Would he ever speak? Have friends? Go to prom? Yes, in those first days, I thought about high school prom, that silly yet quintessential hallmark of adolescence.

Even the terminology sounded all wrong. How do I describe my son? What reason do I give when I explain that we can’t go to playdates anymore because Moe has 25 hours a week of therapy? I practiced when I met new people. “He has special needs.” “He is developmentally delayed.” “He has autism.” “He is autistic.” 

I started reading blogs by people who called themselves “autism moms” or “special needs moms.” Was that me? I mean, I don’t have the special needs. “Mom to a child with special needs” was just unwieldy. They were accurate, but nothing felt right. How could this possibly be my life?

And all the things people said to make me feel better only made me angry.

God only gives you what you can handle.
Everything happens for a reason.
Special kids go to special parents.

I resented all of it. They say that people with autism have difficulty with transitions, but I was the one who couldn’t accept this new role. I didn’t want special. I didn’t want different. I just wanted my son back.

I spent hours looking for cures, researching diets or methodologies that would help my son “recover” from autism. I read blog after blog about kids who accomplished so much more than experts said they would. They graduated from college. They got married. Some of them even went to prom! And every so often, Moe would do something so “normal” that I knew in the core of my being that he would be okay. That he, too, would be a success story.

In the four years since Moe's diagnosis, I’d like to say that things have gotten easier for us. I want to share with you that story of amazing progress, of undiscovered talents or remarkable beauty. But that is not our story, at least not yet. In many ways, things have gotten harder. My son, who is approaching six years old, doesn’t speak. He is not toilet trained, can be aggressive and often goes for weeks without sleeping through the night. His disability and behaviors became so challenging last year that we pulled him out of school so he could return to a full time in-home therapy program.

I’m not yet comfortable with the life my son is forced to lead, though I suppose he isn’t forced any more than any of us are forced into our own neurologies. I’m not comfortable with the praises that are automatically given to parents of special needs kids. I’m not comfortable with the scratches and bruises I’ve acquired when Moe becomes frustrated at not being able to communicate his needs. I’m not comfortable with the uncertainty of his future, with the knowledge that my husband and I will never be empty-nesters or with the ongoing fights with school districts, insurance companies and therapy providers to make sure that my son is safe, educated, and treated with respect.

But some transitions happen no matter how hard we fight them. I am no longer a tourist in this foreign country. I know the terminology, able to throw around acronyms with the best of them. I have learned to speak Dutch, as it were. I have become adept at advocating for Moe's needs and have immersed myself in local and online communities of special needs moms, some of whom have autism themselves.

I am no longer trying to cure my son or make him into the “normal” child I expected to have. I wear proudly the title of autism mom, just as I want Moe to grow to be a proud autistic adult.

I am Moe's mom. It is a special role indeed.


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