one year of autism

It’s been exactly a year. A full year down to the minute, since the phone call I’d been waiting on, when the doctor told me what I already knew: “they both meet the criteria for an autism spectrum disorder diagnosis.”

I’ve been trying to find the exact right way to commemorate this event. What sort of reflective blog post should I be making right now? What is the “point” of marking this anniversary? What exactly do I want to say about it?

What I’d be writing about isn’t one year of autism, but one year of life.

It includes all of my fears and the process of slowly resolving them and accepting my unique and wonderful girls for all of who they are.

There are the many therapists who have been in and out of our home, including the ones we haven’t seen in months and the ones who joined the team just recently. I’d highlight the primary behavior therapists, who sat with me and agonized over how, HOW to get through to Ham when she checked out and ignored us during tiring therapy sessions, or how to help Chicken meet her sensory needs so she would stop chewing on and climbing on everything. Those therapists have stuck their necks out to advocate for my girls and have celebrated even the little victories (because little victories are big victories in disguise). For real, if it didn’t completely violate their privacy, I’d be shouting their names from the rooftops and telling everyone out there to get these specific therapists for your kids. They’re doing great things in the world, and they’re doing it with respect and reflection, which is rare.

There are the many therapeutic environments in which we talked about milestones and picked-apart behaviors to try and understand them… and then the non-therapy play spaces like the zoos, playgrounds, museums, aquarium, and nature trails we walked with friends, where we saw the skills they developed in therapy translate to the big wide world.

There are our wonderful and amazing friends whose children have been my girls’ playmates even when they hardly noticed other kids around them. Friends who I have talked to while working through the messy and complicated coming-to-terms phase of this journey (yeah, I know, it’s so trite but it really is a journey), and friends whose children have been so beautifully accepting and engaging with my girls. How much credit can you give a 2-year-old who works hard to try to get the attention of another 2-year-old that’s completely ignoring them? You can’t measure it. Children come in a beautiful package before they learn to be intolerant, and the people we’ve surrounded ourselves with over the years are, unsurprisingly, churning out some of the best little humans I’ve had the pleasure of meeting. (Can I just tell you that our friends’ daughter just got two dolls for her birthday and named them after our girls, who didn’t even make it to the party? So heart-meltingly sweet.)

There are the people and systems that have been more difficult to work with. I get as frustrated and whiny about such things as the next person, but I firmly believe that difficult people are put in your path to teach you to learn how to deal with all sorts of personalities. It’s an important skill. I could fire someone now and choose a different professional, but when my kids are in school there will only be one classroom teacher, or one special ed coordinator, or one school principal, and we just might be stuck with them. (Luckily, we’ve had very good luck with our current set of professionals.) Similarly, some programs and systems are a baffling nightmare to work with, and I’ve definitely learned a few tricks along the way– mostly, “take notes on everything all the time,” “get confirmation codes,” “save all your paperwork,” and “know people who know tips and tricks.”

There are the new people I’ve met this year– other special needs parents of autistic kids, kids with speech delay, or kids with medical complications, or sometimes any combination of those things and more. There is nothing like having a network, and even more centrally, a network of people who “get it.”

There has been the benefit of slowing my expectations for my girls. Not lowering them, but slowing them. I still move a million miles an hour, buzzing with anxious energy, and I don’t get enough sleep, but I am, in teeny-tiny increments, dipping my toe into “just effing relax already” territory. I can still research the hell out of everything if I need to, but in the meantime, I have to let my girls take their time. This counts for long-term development (maybe we’re not ready for potty-training quite yet) and the short term (processing speed). I can’t tell you how many times we’ll tell Chicken to “say bye bye” as a therapist is leaving while she stares blankly at them, only to hear the door click closed and then a small “baaaaaaaai.” When we left my parents’ house today, Chicken spent the first five minutes of the drive home waving slowly and saying, “Bye to Nana,” over and over. It’s in there, but in the moment, sometimes she just can’t get it out. That’s okay. We have time.

We’ve learned a lot– M and I both. About autism, about special needs, about realigning your expectations for your kid when you realize your kid is running on a totally different operating system from you but the system functions just fine. And boy, do they have funny and brilliant little minds.

I’m writing all of this from a very “me, me, me” perspective, but that’s okay. To my girls, there’s no significance to this anniversary– this was just a year of doing what they always do. They’ve been playing, learning, growing, and connecting. The changes we’re seeing in them are incredible, but not because we’re somehow erasing autism from the equation.

If they have autistic brains, then they will always have autistic brains. That doesn’t mean they’ll fail to connect with us or struggle to make friends– because they have friends and they do connect with us. It doesn’t mean their lives will be plagued with sensory-seeking behavior, because we help them accommodate their sensory needs as much as we can and we’re already seeing their self-regulation improve. It doesn’t mean they won’t communicate, because they communicate already (behavior is communication!) and they’re continuously building verbal and non-verbal communication skills. They can be different! Different is okay. Different is beautiful.

I’m looking forward to another year with my beautiful girls, full of crazy hats, tutus, happy squeals, dancing, and yes, probably a lot of (almost) three-year-old attitude. (Lord, beer me strength.)

So my only message to myself one year ago: just keep going. You’ll get there when you’re ready. They’ll be okay. Also, they’re going to get really, really tall.

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The silliest of hams, laughing and being silly with her tiny Bert and Ernie dolls clutched in her little fist.

 

(To see where we were almost a year ago, click here.)

The Preschool AAC User’s Classroom Rights

The first week of September is winding down, and it seems that everyone is officially back to school. It’s been *cough*teen years since I was in school and now, as I look towards the two-month countdown to my girls aging out of Early Intervention and tumbling into preschool, I’m realizing how much has fundamentally changed with the educational philosophy I’m seeing in public schools. I think that from my perspective the short version difference, summed up, would be “everybody gets an iPad” and “7-year-olds keep getting suspended for sexual harassment.” I don’t want to shortchange inclusion, though. We’re only about forty-odd years out from the “official” inception of intentional public special education, but a lot has changed. We are starting to understand that

* people who cannot speak can still be intelligent, thoughtful and articulate

* there can be multiple factors (processing speed, noisy environment, fine motor difficulty, sensory overload, physical discomfort) contributing to the sometimes wide variation in an individual person’s school performance and how they manage different types of testing situations

* technology is making adaptations for special learners easier

* people with disabilities can speak for themselves and describe the further adaptations and considerations that they think are needed to help all children have access to learning

Before I get too far ahead of myself– I’m no expert on any of this. My classroom teaching experience has only been in the “under three” domain, with the exception of one year of one-on-one and small-groupn tutoring with elementary school students. My formal education has been largely developmental and focused solely on infants and toddlers. I have no great understanding of the history of public education in the US, although I am very interested and it’s on my “next time I have five minutes alone and can convince myself to do something besides five minutes of zone-out Candy Crush-ing” to-do list. In addition, I am not a person with disabilities and I have never had to go through the special education system myself as a student.

For now, I’m looking ahead to November and that first heart-bursting-yet-gut-wrenching day when I send my beautiful, spirited little girls off to preschool with giant backpacks. I’m thinking about the backpack that’s going to have an iPad in it, and how I could fill three hours talking to all of Ham’s teachers and therapists about every single thing I want them to know about AAC and what Ham needs. I can’t sit down with them for three hours, though (my G-d, they would hate me).

There are so many things I want them to know that feel non-negotiable. I want Ham to be respected– not talked at, or over, or about. I want her choices to be about learning and not behavior management, and I want them to be hers. I don’t want anyone “puppeting” her by taking her hand and forcing her to type things– which, I’ll admit, I’ve done before when I didn’t realize it amounted to squeezing a speaking child’s cheeks together to try to force them to say something. And I want her to always, always have access to her words.

Most importantly is the tangible but hard-to-describe-in-brief feeling of desperately wanting Ham to build up a strong sense of self-worth and agency. This is important to me for both of my daughters, of course, but it feels even more urgent to build self-advocacy skills early in a child who is nonverbal and relies on a device that is completely separate from her and can be physically taken away. Can you imagine if, as a child, your voicebox was external to your body and could be physically removed and then reattached? How many times would an adult who shushed you be tempted to just remove it for a little while until you could have it back?

 

With all of this in mind, I typed up an preschool AAC bill of rights– just one page with size 10 Arial font (I checked)– to send in with her iPad info and “All About Me” page that I wrote up and will be sharing here in a few days for both of my girls. This covers the bare minimum of what I want Ham’s teachers, therapists, and aides to know about AAC, although there will be much discussion and (fingers crossed) ongoing consultation with Ham’s current AAC specialist within the classroom to keep everyone on the same page. 

The Preschool AAC User’s Classroom Rights

I have the right to access my device all day long, in all environments and situations.

This may not be easy on the playground, during messy art activities, or in the bathroom, but my device is my voice, and taking away my voice is like silencing a speaking child. Please ensure I always have access to my words.

I have the right to access all of my available vocabulary.

Children my age often experiment with saying “bad” words, using language repetitively, or speaking at times when they should be listening. Like my peers, I will need to be taught social language rules alongside language use. Please do not ever take away my option to use words by removing my access to vocabulary.

I have the right to be heard and listened to.

Please give me the time and attention I need to gather my thoughts and express them. I may need your assistance in:

adjusting the volume of my device so I can be properly heard in a noisy environment and communicating to my parents if my device does not seem loud enough

encouraging other children with whom I am trying to communicate to wait just a moment while I type

waiting, waiting and waiting some more because I will need time to go through the process of sorting through both my thoughts and my 600+ accessible words, all of which requires additional motivation, focus and clarity that might be hard for me to maintain in a fun and busy classroom

speaking slowly and clearly so that I have time to hear and process what you said before responding

I have the right to access vocabulary relevant to the new things I’m learning in school!

Please stay in touch with my parents about words they may need to add to my device before we start a new unit so that I can keep up with my peers, and please tell them at the end of a school day if some other new words popped up that I will need access to.

I have the right to learn through modeling.

When my teachers and therapists use a matching device along with me, I can hear the words they’re using and simultaneously see how they construct phrases and sentences with a device like mine. This is called “Aided Language Stimulation” and is an important part of how AAC users learn to use language.

I have the right to be the only one making my finger touch the screen.

Sometimes I get tired, frustrated, stubborn or distracted and I don’t want to use my device. It is important to always let me be in control of using my own words so my device never becomes aversive to me. Please do not ever forcibly put my hand to the screen to make me select the things you want me to say. Instead, you can model it for me on your modeling device.

I have the right to be presumed competent.

Please know that even when I cannot speak, I can hear and understand everything you say. Please choose the words you use around me carefully, especially when you are talking about me with someone else. Remember that people with disabilities often receive very negative messages about society’s perception of their value and capabilities. Help me to see from an early age that I am valuable– and help communicate that message to my typical peers by talking positively about AAC and not allowing them to grab my iPad or attempt to damage it.

I would love for anyone and everyone who thinks this document could help them to copy and paste, edit it to fit your child (who may have additional notable needs, or may be older than preschool, or whatever) and send it along with your child on that first, second, fifteenth, or hundredth day of school. If you choose to share it online, feel free, but I’d love a link back here, too! I’m not looking for “credit,” but I’m going to keep posting things that are useful to us through our “entering preschool with AAC” journey and I want people to be able to find all of it.

I invite teen and adult AAC users who may come across this post to add to or correct me if needed! This write-up was designed to represent my daughter and will need to be adapted by others to accurately describe themselves or their children, but I want to ensure I haven’t misspoken in a way that misrepresented AAC users as a whole.

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Chicken and Ham doing some messy experiments– food coloring and vinegar mixed with baking soda– with Ham’s trusty “words” always close nearby, even when she’s too busy to use it.