Lara Sandora

@larasandora | contributor
Our family of four has been working through the puzzle of autism for almost ten years. We wanted a place to celebrate our successes, enjoy family time, and create memories. Travel is always challenging, but it is manageable when you know you have a suitable place to stay when you arrive. For us, we intend for the Piece of Mind Retreat to be that place. We hope it will be for you as well. Follow me on Facebook, Instagram, or Pinterest, where I am busy planning my next vacation.
Community Voices

AUTISM VALENTINES DAY: HEARTS IN THE WORLD

AUTISM VALENTINES DAY: A WISH FOR MY FELLOW AUTISM MOMS

I see you.  Trying to put together the fanciest Valentines in the class (with candy! and stickers!) so your kid can practice their “put in” skills and the class will be excited to get the card.  Volunteering (in normal times) to bake cupcakes for the class – so that there will be gluten-free, dairy-free ones that look exactly the same as everyone else’s.  Going overboard with teacher gifts, because you know that the team that spends all day with your child are a mashup of saints and superheroes.

YOUR SECOND HEART
They say having a child is like having part of your heart walking around in the world – but what happens when your second heart bites, pinches, or hits?  What happens your second heart is so shrouded in communication challenges that it pushes others away?  What happens when your second heart is so plagued by sensory challenges that it is all but lost in a sea of dysregulation?  What happens when your second heart shows such pure, unfettered emotions that you are reminded of the utter simplicity of humanity?  What happens when your second heart shows you the way to the people in your life that will support you both?

Both our kids were born in February, so in our family, so our autism Valentines Day is flanked by two birthdays, making it one short month overflowing with celebration.  Add in Lunar New Year – which is celebrated by many of our friends and team members – and February marks a fresh start even better than January 1.

Living in California, we are fortunate that we can catch a late-February day to have a birthday party that spills outside (not one that is forced outside by #COVID19 restrictions).  We invite the team.  Our people.  And go overboard with the food and favors and fun as a genuine, heartfelt way to thank the friends and family and educators and therapists who remain in our corner throughout the other eleven months of the year.

SEASONS OF LIFE
But as we celebrate our Groundhog Day child with an annual Mardi Gras feast and festivities, we also notice that time – and milestones – are very fluid in an autism family.  In some ways Mr. Diggy is like an infant, routinely calmed by endlessly driving in circles around our neighborhood.  In others, he is like a toddler, choosing finger foods and parallel play whenever possible.  At times he is like a kindergartener, obsessed with his Minions, and making silly “jokes” on his AAD device.  Mr. Diggy is tall for his age, but he still loves to wrestle with his dad and brother, and is often in constant motion – zigzagging through our house and yard like a human pinball.

As a middle school student, he is also safer in the water than almost anywhere else, and making progress on the ukulele – in these activities on par with, or even better than some of his classmates.  And we have to remind ourselves that this February, he will be thirteen and he will still be all of these things – and so much more.

So my wish for your autism Valentines Day is for you is to find joy in the everyday.  To find inspiration in the mundane.  And to appreciate the love your “other” heart holds for you – even if that love is not expressed in traditional ways.  (Oh- and make sure to save yourself some of the dark chocolate caramels this year – those are the best!)

 

Lara Sandora

6 Considerations When Choosing an AAC Device

How do you choose an AAC device? If your child has few words, or has difficulty expressing themself with words, then it might be time to consider an adaptive and augmentative communication device, often abbreviated as “AAC.” Less than 20 years ago, devices in this category were large, heavy and prohibitively expensive. While many parents cheered (or mourned) the debut of iPads and similar tablets as a form of portable entertainment for their children, the possibilities they introduced for use as AAC devices were unmatched. Now, a high-end holiday gift combined with a (virtual) trip to the app store allows families to have an AAC device at their fingertips. But before you jump in, here a few things to note to help you choose an AAC device: 1. The apps are all expensive. Speech and communication apps are not in the $1.99 price range, like so many options on the app store. In fact, $199 would be considered a bargain price for many of them.  So do some research before you buy. In general, apps are not returnable, so proceed with caution to avoid having hundreds of dollars of unused apps on your account. 2. Engage a pro. While you can certainly research options on your own – I highly recommend checking out YouTube to see the different programs in action – you should also involve a specialist, ideally someone who already knows your child. An increasing number of speech and language pathologists have specializations involving AAC – so seek one out, if possible. Do be aware that there is no certification body for AAC, so anyone can make a profile for themselves and call themselves an “AAC specialist.” I recommend choosing someone who is a licensed speech-language pathologist first, with a professional interest in AAC. 3. Try several. Whether receiving services in private practice or via a school or county program, it is important to try before you buy. The professional you are working with should be able to lay out pros and cons of a few options before narrowing it down to a few to try.  Ideally, your child would try a few sessions on a borrowed app/device before a purchase is made. 4. Consider the user’s strengths. While the overall concept of AAC apps is similar — users touch icons to communicate — the specifics vary more than you think.  Some use symbol-stick figures, others use the same icons as most PECS (Picture Exchange Communication System) icons do. Some, like Touchchat, allow families and therapists to “build” their own pages and layouts (great for kids who are able to scan independently to choose their next word), others, like LAMP Words for Life, are based on predetermined pathways (super-helpful for kinesthetic learners who benefit from motor planning patterns). 5. Commit to learning the “second language.” When we first downloaded Proloquo2Go, we thought my son was going to be communicating overnight. The best way to understand how off base this thought was is to consider the time you spent learning a second (or third or fourth) language.  Many of us spend years studying languages in school to emerge with a competency that is far from fluent.  And that is with regular, daily exposure to the language. Learning AAC is no different. To be effective, everyone the individual sees on a regular basis should be trained on the device, and there should be hours upon hours of modeling before communication with fidelity can be expected (Again, consider the years that infants and toddlers listen to spoken language before building their own spoken vocabulary). But if the team buys in, progress is possible. 6. Tomorrow is another day. Not every day will be one of progress, but there will be other days. Being home with my son round the clock for months in 2020 resulted in us having an even better understanding of his sensory regulation needs, which affect his ability to attend to his AAC device. It also proved to be an AAC-language boot camp for the entire family, making us better supporters in his use of the device. (Now all we need is a floating, waterproof iPad cover to make communication more realistic for a kid who all but lives in the water!)

Lara Sandora

What 'The Minions' Can Teach Us About Life With Autism

What is it about the Minions and autism? The seasons of life are even blurrier in our family than they are in most typical families.  Milestones are most certainly met – but on a very atypical timeline, meaning that days and weeks and months blend together in a way that can make progress hard to gauge. In our life, our Honda Odyssey minivan is the backdrop — and often a supporting character – in so many of these developments. We have used it for emergency wardrobe changes and hiding from unexpected crowds at events.  Armed with Mr. D’s disability placard, we have used it as a “base” for tactical missions to specific exhibits or rides before immediately leaving. We have weathered meltdowns and driven in circles on nights sleep was slow to come. More recently, we have even had injections and medical consultations while in our minivan. But perhaps our most frequent (non-commute) use of it has been as a mobile movie theater, complete with snacks in the cup holder. And while we certainly christened the minivan DVD player with some Thomas the Train, Elmo and Caillou disks, for several years now, the film of choice has been “The Minions.” Which has made it the soundtrack of our lives – at least in the car. While I know plenty of autistic individuals with an affinity for Disney, trains or cars, we’re in the Minion camp at our house.  And according to Google, we are not alone.  Search “minions and autism” and you’ll find 1.5 million hits. Even though the movie didn’t garner much critical acclaim, it’s a winner in our house.  Because what is true in so many families of kids with autism is that if something “works” you keep doing it. It’s why Mr. D’s Groundhog’s Day birthday is so fitting – and why when the pandemic forced a repetitive sameness on so many households, in some ways, our family was way ahead, already immersed in our own personal continuous loop. So why the Minions and autism? Why are they are on our continuous loop? After untold hours spent listening to (and occasionally watching) the Minions, here is my take. Why your autistic kid loves them: Their language (or lack thereof) The minions speak an unusual composite language of English and utter gibberish, with a touch of Spanish and French thrown in for good measure. And we swear Mr. D understands every word of what they say. Their yellowness The yellow is bright, stimulating and attention-grabbing.  It’s hard to lose the minions on the screen (except in the scenes where all the Minions are present at once!).  It is clear who you should be paying attention to. Their shared love of bananas One of the few clearly spoken English words in the movie is “bananas” – which also happen to be one of Mr. D’s favorite foods. Bonus:  there are plenty of shorts and stills of Minions eating bananas, which has been helpful in building vocabulary around food. Their antics An area of incredible growth for Mr. D has been increasing his use of “comments” on his AAC device, in particular, “ha ha ha.” The Minions provide many, many opportunities to comment with laughter. Their agelessness The Minions were the same age when dinosaurs roamed the earth as they were in the swinging sixties, angling to steal the British crown.  They are ageless, timeless and seem to be imminently relatable to many autistics. What your family can learn from them: Think outside the box The Minions are seeking the evilest boss for whom to work, but they are nothing but creative in their thinking.  They use costumes, camaraderie and creativity to get themselves into – and out of – some wildly sticky situations.  There is a place in this world for each and every one of our own autistic minions. You can have a successful, non-traditional life even if you communicate differently. Yes, the Minions talk nonstop, but the rest of the characters miss out on 99 out of 100 words. But despite this seemingly limiting communication pattern, the minions continue to seek out, and work for, the most evil people they can find. And that is their definition of success. A place for everyone Though their mission is non-traditional, there is a place for the Minions in the world. And that is a fantastic reminder that all our square pegs will eventually find some square holes in which to find fulfillment in their lives. Enjoy some 60s music As far as movie soundtracks go, this is a pretty solid one – all the more important if you are the driver of the minivan, so you are resigned to listening, not watching. Sixties hits include “Happy Together” by The Turtles, “My Generation” by The Who, and a minion-y remix of the Beatles’ “Revolution.” Don’t take life too seriously In the end, it’s about quality of life. And for us, the minions embody that. They are intent on living their best lives, and they – along with our minivan – help make our family’s version of autism a little brighter, and a lot more fun.

Lara Sandora

Navigating Health Insurance Coverage for Autism Services

You didn’t sign up for your child to have an autism diagnosis, but you learn to work with the news of a diagnosis and establish a “new normal” for your entire family. Autism insurance is an entirely different beast. Autism insurance coverage can make or break your financial situation. The breadth of insurance plans in the United States is staggering – which makes it nearly impossible to offer plan-specific support here. It is not enough to say you have “Blue Shield” or “Aetna” – each plan offers a slightly different menu of services that are covered and it is important to compare apples to apples, so to speak. But what follows are some of the keys we have found to navigating autism insurance. I do not contend to be an expert – but I do have years of (hard-fought!) experience. For more resources, connect with the fabulous folks at the Mental Health and Autism Insurance Project. 1. Be persistent. Whether seeking authorization for a new prescription or increasing hours with a certain provider, your issue is unlikely to be addressed in just one call. You can use digital reminders to alert you to follow up as needed. Be as specific as you can in those reminders – note any reference numbers, names of people you spoke with, and/or expected outcomes. 2. Read the fine print. When you get an Explanation of Benefits (EOB) where a payment is not made (or not made in full), there will often be “footnotes” – numbered comments that attempt to explain why the claim didn’t go through. When you contact your providers or insurance company, you can start with that information. Was a code missing? Was a date mistyped and thus double-billed? Or was a form not filed so that a therapy is now suddenly considered to be “out of the scope” of a provider’s work? 3. Document, document, document. When at all possible, communicate with insurance companies via email, so you have a written record of what transpired. Unfortunately, none of the three companies we have worked with since Mr. D’s diagnosis are super-accessible via email, so phone calls are required. I tend to open Google document files and keep a running list of what has happened and when. It has been helpful down the road – and you never know when you start if problem-solving will take a week or a year. 4. Appeal or challenge through appropriate channels. In most cases, you must first appeal or challenge a claim’s payment through the insurance company itself. Be sure to document these steps, as if/when you need to appeal to outside organizations, they will want to know the steps you have already taken. In California, many (but not all) insurance companies are regulated by the Department of Managed Health Care (DMHC). Others are overseen by the California Department of Insurance (CDI). You will need to check to see which entities oversee your insurance company, depending on your state of residence. 5. Commiserate with others. Insurance battles can be long and draining. Combat the frustration and exhaustion by seeking solace with those who understand – your fellow parents of kids with disabilities. Online resources, such as the Mental Health and Autism Insurance Project can be a helpful resource, as can in-person groups where you can trade war stories.In some cases, regional list-serves or similar online communities can help you access similar families who, importantly, have the same insurance plan as you do. When you manage to get that reimbursement corrected, or to get an out-of-network provider approved – it’s time to celebrate! Set that money aside to start planning your next family vacation.

Lara Sandora

Autism Future Planning: 5 Factors to Consider

Are you overwhelmed by the thought of future planning for your loved one with autism? Looking Ahead A diagnosis can be shocking. You freeze. Unable to think, to move, to decide, to do. But, over time, you learn to both live in the present and plan for the future. It can be challenging just to get everyone out of bed, and wash, dress and feed them on a (semi-)regular basis. Add in ever-changing online and hybrid school schedules, telehealth appointments, and other aspects of parenting in a pandemic, and it’s no wonder you are at your breaking point. Silver Lining While we certainly didn’t wish for this pandemic, it has certainly afforded us the time and space to take stock of what Mr. D. needs and wants when everything else is stripped away.  He has spent most of the Covid shutdown in water, with maybe a total of 1-2 hours daily of instruction/therapy. Yet he has made great improvements, met several IEP goals and is much more proficient with his AAC device – all because we believe his sensory system is more regulated. This has caused us to entirely rethink our autism future planning for him. Planning for the Future Whatever age or stage your child is in, I encourage you to take some time to consider these five areas. Three were poignantly summed up by Feda Almaliti in an interview filmed just a few months before her untimely death – with her son – in a house fire.  She wished for her late son, Mu, to have “a home, a friend and something to do.” Underlying those universal wishes are two other factors that have felt all the more tenuous in recent times: health and finances. 1) Longevity: Health and Wellness Autism future planning involves the whole person. Managing medical diagnoses are only part of this – also important to consider are ways your child stays active, their diet, their sleep habits.  Assess what needs exist now, and reflect on how they might change over time. 2) Flexibility: Finances In the short term, this probably has a lot to do with health insurance, rent and mortgage payments, and supplying the never-ending “extras” of autism – specialized clothing, special foods, and the next new device that promises to address the biggest headache in your home. Those needs will all continue into adulthood – so now is the time to start understanding the labyrinth of public services like Social Security, Medicaid, and more — especially if your child has a high level of needs.   Autism future planning calls for flexible, creative financial planning. 3) Stability: Housing Right now, your child is probably living with you – wherever you have been quarantined for much of the past year. Quarantine can teach you a lot about what works – and what doesn’t. Maybe it can help you project what type of housing setting would be best for your child. Housing is core to autism future planning. Hundreds of thousands of adults with developmental disabilities live with their aging parents – a precarious situation. If you feel overwhelmed at the thought of this process, start with the Autism Housing Network’s housing guide, titled A Place in the World – it really lays out the terminology in an approachable way and will help you to get a handle on the vocabulary you need to plan in this area. 4) Accessibility: Educational and Vocational For many autistic children in the U.S., the core of education is the IEP, or Individualized Education Plan.  The plan can last until the individual is 22, at which point many parents and guardians describe their children as falling off a “cliff” of services, into a relative abyss.  As with all individuals, it’s best to focus on the zone of proximal development.  Meaning build on their strengths, and then push them just the slightest bit beyond that to achieve growth. Again, the minimalist programming afforded us (by necessity) during the pandemic has helped us to refocus on what progress looks like for Mr. D. Our biggest takeaway – which we had strayed from under the guise of getting him more and more services – even the smallest amount of instruction goes much further when his sensory needs are adequately met.  And it seems that four to six hours in some form of water is a huge part of filling up his sensory bank. 5) Inclusivity: Quality of Life This is perhaps the most foundational aspect of your child’s life, and often the one that falls to the bottom of the heap. If you have not already, take stock of what brings your child joy. First, try to incorporate as much of that as possible into their life now. Then try to envision a life going forward that will allow you to support, not fight against, accessing this. For us, the answer has become clear. It’s time to make our home-away-from-home into Mr. D’s year-round home. So we are wading into the world of disability housing and creating a landing pad for him to have supported independence as a young adult, as well as year-round access to warm water in Hawai’i. In the words of Indian author and activist, Arundhati Roy, “Historically, pandemics have forced humans to break with the past and imagine their world anew. This one is no different. It is a portal, a gateway between one world and the next. We can choose to walk through it … lightly, with little luggage, ready to imagine another world. And ready to fight for it.” So allow yourself to imagine what sort of hope and possibility lies on the other side of the gate. Our son is just 12, but autism future planning weighs heavily on us as he has a need for a high level of support.  It’s never too late — or too soon — to start thinking about the future.

Lara Sandora

7 Strategies to Help Autistic Children Manage Meltdowns

Do you know how to manage autism meltdowns? If you are parenting an autistic child, you are likely witnessing some extreme moods. In the autism community, a critical mass of these extreme moods is often referred to as a meltdown. A meltdown is much different from a tantrum – and therefore needs to be managed differently as well. If you take your child out in public (and you will, again, post-quarantine!), then you may have experienced the side-eye and under-the-breath comments that passers-by tend to dole out.  While these comments are beginning to dwindle as our society becomes more and more understanding of neurodiversity, many people will continue to judge your parenting. These are challenging moments as a parent. But as Naoki Higashida reminds us in his first-person account of autism, “The Reason I Jump,” if you think it is hard to witness, it is many times more difficult to live it.  So here are some factors to consider when trying to figure out how to manage autism meltdowns: 1. Sleep Or more specifically lack of sleep used to be the number one cause of meltdowns in our house. You may already be aware of this connection, but what steps have you taken to address it?  Here are some sleep tips you can consider to help you manage this single aspect of life that has such a ripple effect through the entire family. 2. Sensory Because we have worked so diligently to address the sleep issue, sensory dysregulation has now emerged as the most-likely culprit when Mr. D’s mood descends. Regular physical exertion is key – it is why we use a wide array of “tools” to help manage his “sensory bank.”  Between quarantine, heat waves and wildfire smoke, this year has been extra-challenging, so we have had to be extra creative. He showers in each shower in the house. We roll him up in a blanket like a burrito. We drive him around listening to music. 3. Surroundings An extension of the sensory aspect, pay attention to what is going on in the environment that could be causing an extreme reaction. It could be the obvious – a loud noise such as a garbage truck or a tree being removed. It could also be something less apparent to neurotypical individuals, such as a faintly ticking clock, an extremely high ceiling or even a bird chirping. While you can’t always immediately change your location, just being aware of any environmental triggers can help you plan accordingly. 4. Social If your child is verbal, then it is likely that they can share their preferences about being alone or with others, or at least their preference for certain company over others. But they may not be able to voice those preferences clearly. Non-verbal individuals may struggle even more mightily with this. We definitely see extreme reactions from Mr. D in situations involving new people (a much less prevalent issue during quarantine!). If we have a family obligation to attend a gathering with many new faces, we are sure to plan an “escape route” by taking multiple vehicles or scouting out ways for him to take a break. For us, a  simple, portable way to do this is simply to retreat to our car. Though we purchased our minivan before he was diagnosed, we chose one with a DVD player. We continue to be thankful for that decision that younger-us made. 5. Seasonal You are probably acutely aware of any plants or trees that cause you to have seasonal allergies, but you may be less aware of what is affecting your child. Mr. D, it seems, has acquired both “sets” of seasonal allergies. If either of us is struggling with watery eyes, sneezing or other allergic symptoms, we know to double-check his allergy medicines and consider other interventions. A shower to rinse off pollen can be helpful, as well as going for a drive – with the windows up, of course. 6. Stomach For reasons that are only partially clear to medical experts, there is often a higher incidence of gastrointestinal issues among autistic individuals than in the larger population. These issues can vary, but may include issues with food textures or tastes, sensitivities to any number of food categories (dairy, gluten, soy, sugar to name a few), or other, often hard-to-trace instances of diarrhea, constipation and/or acid reflux. I can’t even count how many visits to urgent care we made before we figured out that extreme constipation was an issue for Mr. D. After a lot of trial and error, we removed dairy from his diet, and used Miralax to stabilize his GI system. Now, years later, regular probiotic use (and still almost no dairy), have reduced this type of meltdown almost entirely. 7. Self-care The idea that parent or caregiver self-care can impact your child is one that may take some time to come around to. Parent self-care is part of how to manage autism meltdowns? I admit that I was skeptical when I first heard Linda Lotspeich speak on the topic several years ago at the Stanford Autism Center’s annual conference (where I am a volunteer member on the Parent Advisory Board). Certainly, I thought, the mindfulness and other aspects of self-care she was recommending were for the autistic individuals themselves, not the parents? But in fact, though she continues to work toward published research on the topic, the anecdotal evidence becomes increasingly clear with each and every cohort of her mindfulness program.  And because seemingly everything is virtual now, you can participate from basically anywhere, time differences notwithstanding. If this program is not a fit for you, then simply the awareness that your personal well-being and your own self-regulation has an impact on your child is important to focus on. It is for this reason that quality of life for families of children with autism is at the forefront of nearly everything I do. Our family life is rarely punctuated by the acute medical events that mark other disability communities. There aren’t surgeries to prep for, treatment phases to plan around, or extensive medical equipment to acquire (unless a trampoline counts as medical equipment). Autism often involves a slow march of moments – often with extreme daily – or even hourly – highs and lows. This slow march can mask growth and progress, but if you take “snapshots” – like comparing annual IEPs or ABA evaluations – you may be surprised at what is transforming right under your nose. Managing meltdowns is part of the marathon — living with autism is decisively not a “sprint!  But learning how to manage autism meltdowns while also improving your own quality of life is as close to winning a marathon as you might get. And that’s a win I’ll take.

Lara Sandora

How to Support Siblings of a Child on the Autism Spectrum

It can be challenging to figure out how to support siblings of a child on the autism spectrum — if only for the time it takes you to manage your autistic child and his or her therapies, providers and related paperwork. But they are your children too. 1.Explain to others — then teach the vocabulary. When our kids were young and Mr. D would rip off his clothes and streak through a playdate, we would explain to both the child — and the child’s parent — a Reader’s Digest version of autism. When other kids made of Mr. D in front of B, we would turn it into a lesson for everyone. And as time evolved, B adopted his own way of explaining his brother’s less typical behaviors, and lack of oral language, to his peers.  So now, I can have a house full of typical 14-year-olds who don’t bat an eye when an 11-year-old swipes a bottle of spray olive oil and starts misting the entire house like it’s a (greasy) room freshener. 2. Allow them to have typical moments. Think about the mundane, the day-to-day. To pull this off may mean securing a babysitter, or tag-teaming, with your partner.  In elementary school, a big one was Open House: every student’s chance to show off their desk, their art, and their class to their parents.  We would often manage this by taking everyone to B’s school and setting up active Mr. D on the playground. Then we sold B on the “chance” to do his entire tour twice — once with each parent. We also left Mr. D (happily!) in his own classroom to allow us to attend music concerts, plays, and even his sixth grade promotion ceremony. 3. Accentuate the positive. Despite the obvious challenges, there are some remarkable points of access that can be afforded to families of children with autism. You might be surprised which of the disability programs in your community allow siblings to participate as well. Over the years, B has accessed nearly-free ice skating, empty-except-for-us jump arenas, and special water activities — simply because he has a brother with autism.  He also benefits from us parking with Mr. D in closer, disabled parking spots, and from shorter lines on rides due to the various access passes available at amusement parks. Not to mention entire-car access to National Parks when his brother is with him. Do these “perks” make up for the rest of our complicated lives? No, but they help him get through the more difficult times. 4. Meet their needs and support their interests. Work with teachers and coaches on how to support siblings in developing their own accomplishments and relationships. But I’m going to challenge you to take this a bit further.  First, consider the sensory needs of your typical kid(s). We were a bit slow on this as B’s sensory needs are nothing like his brother’s (who routinely eats whole lemons and rolls around in muddy puddles).  We were fortunate that his fifth grade classroom had the new wave of “flexible” furniture and at Open House (see above) the teacher indicated that B routinely used the “chair” that was actually an exercise ball.  Well, that was an easy add to his study area at home. As were some of the items from our Sensory Theraplay boxes that were not Mr. D-friendly — mostly fine-motor toys that were a potential choking risk. And also think about the life skills of your typical kid(s).  If you haven’t read “How to Raise an Adult” by Julie Lythcott-Haims, then put it at the top of your list — above your next autism book. For years, we thought we were “helping” B by limiting his “chores” and contributions to our household. Lythcott-Haims helps reframe this notion — essentially flipping it on its head.  If you don’t prepare your child to launch with non-academic skills, no GPA or test score is going to be enough to keep them from boomeranging back to your couch after (or, even worse, during) their college years.  So taking time to teach your typical kid to cook, do dishes, wash clothes and put gas in a car is an essential way of meeting their needs as well. 5. When in doubt, travel. When thinking about about how to support siblings, you may not think of travel, but you should. Whether this is sibling travel — where parents tag-team with traveling with the sibling(s) while the other stays with the autistic child — or supported family travel — typical siblings deserve the opportunity to travel.  Travel helps build those life skills — carrying ID, managing money, and navigating transit systems — but also serves to create experiential memories that are beyond what can be created in the everyday routine. 6. How to support typical siblings? Just start. Feeling like you have been hyper-focused on your autistic child and have been giving their sibling(s) short shrift? It’s not too late to start — no matter the age of your children, you can incorporate any of these ideas as you move forward.

Lara Sandora

Gift Guide for Autistic Tweens and Teens

During our current health crisis, it can seem harder than ever to shop for anyone, particularly autistic tweens and teens. These ideas are all viable this year as well — especially if you consider a pass or tickets to an outdoor location. Here’s why you need a gift guide for autistic tweens and teens: Autism can make gift-giving challenging. Autistic tweens and teens appreciate thoughtful gifts as much as anyone, yet the mystery of what to give them persists — for family and friends alike. Let’s start with the fact that almost none of these gift ideas are physical or take up space. If your home is anything like ours, it is filled to the brim with “things” our autistic son would supposedly enjoy. In the end, there are relatively few items that are marketed as “toys” or “games” that maintain a prized status in our house. Instead, on a daily basis, it is cardboard boxes, bubble wrap, stray ribbons, and empty plastic bottles that sustain Mr. D’s need to explore his surroundings. But I do feel strongly that a non-verbal autistic tween or teen should not be left out of whatever gift-giving occasions your family chooses to celebrate. Here are the Piece of Mind Picks for your gift guide for autistic tweens and teens. Tickets or Passes to a Favorite Spot This can, of course, change over time — although some kids maintain a fascination with trains, animals or other interests well into adulthood. If you have a favorite local spot, then don’t be shy about sharing it with gift-givers. Aquariums, zoos, museums, and amusement parks may all be good candidates. If you have an outdoorsy kid, then a parking pass to a nature preserve or county park might be nice. (The National Park Service and many State Park systems provide special admissions access to guests with disabilities of all ages — check their websites for info.) Restaurant Gift Card (with a take-out option) If you know the family has a special spot where an in-person visit is possible, then this is a great choice. But if you don’t know for sure, then pick a place where take-out is an option. Because sometimes a special meal is even more enjoyable on your own terms. Gift Cards Mr. D’s all-time favorite food is a bag of Trader Joe’s corn chips.  He could eat a bag in one sitting if we let him. So for him, a Trader Joe’s gift card would be perfect. He also benefits from Old Navy gift cards — where we can resupply the socks and underwear that are constantly getting lost or left at school. And I have yet to meet a family that can’t put a Target gift card to good use. We purchase things that may not cross your mind, like extra-large swim diapers, multiple bubble blowers (because they break all. the. time.), and more bottles of carpet cleaner and stain remover in a month than many people use in a lifetime. A Week (or a Month!) of Therapy Many therapies, such as art, music and equine, are not covered by typical health insurance policies but can provide outsized impact in the lives of individuals with disabilities.  Sponsoring a week — or a month — of one of these therapies can be a worthwhile gift that will surely be beneficial to the recipient. And many of these providers are now offering services remotely.  Sensory Items Again, proceed with caution in adding anything to our often chaotic households.  That being said, some items have a lifespan and additional supplies can be welcome. In our house, this includes chewies, bubble blowers, and yellow rubber ducks. Specific preferences can vary greatly, so if you aren’t entirely certain, then you should choose one of the other options. Celebrating the holidays with a family member with a disability can come with some special challenges. After you’ve used this gift guide for autistic tweens and teens, here are some ideas to rethink the holidays for your family and child with a disability.

Lara Sandora

6 Ways to Rethink the Holidays for Your Child on the Autism Spectrum

The holidays will likely be different this year, but many of these ideas will serve you well, regardless of the size and location of your celebrations. Do you need to rethink the holidays for your family? Eighteen people from four states (but not in 2020, please!) Food allergies. Picky eaters. Spirited discussions. Multiple football games on multiple screens. Your autistic child’s routine turned upside down. If the upcoming holiday season has you dreading what is supposed to be a celebratory time, then it’s time for you to rethink the holidays for your child on the spectrum and your family. Rethink the Crowds Whether a crowd means five or 15 for your loved one with a disability, you need to have an escape plan.  If you are hosting, designate an area of your house and/or yard that is “off limits” for the guests. This will allow your loved one to have some downtime, away from the party or celebration. Rethink the Gifts Well-meaning family members may struggle with gift ideas for a kid who can’t clearly articulate what they want for lunch, much less what they want an invisible man in a red suit to bring in the middle of the night a month from now.  For a few ideas, check out some of The Mighty’s gift guides for kids with disabilities here and here. Rethink the Meals Think about the timing. Often larger groups sit down to holiday meals at “off-times,” like 3 p.m. If this is the case for your celebration, then plan accordingly. Either have a later breakfast, or provide a snack to tide your child over. Or give them a full lunch, and then allow for “grazing” at the large meal, which might be a more practical solution anyway. Also, be cognizant of the food being served. If you are hosting, you can obviously be in control of what’s on the table, and include a crudités platter, bread or rolls, whole olives or whatever else your child will need to make a meal. If you are a guest, plan to contribute an item that you know your kid will eat — for years it was this no-boil mac and cheese recipe. Now that we’ve moved away from dairy for Mr. D, I usually plan to bring some Tartine bread, or veggies and dip. Rethink the Overnight Guests If you will be the guests, then think critically about what environment will work best for you and your loved one.  Here are some things to consider. If you are hosting overnight guests, then make sure that your child’s routine is disrupted as little as possible. In our house, this means filling up other rooms with giant air mattresses to avoid anyone having to share a room with Mr. D. Rethink the Family Traditions Think about how you can incorporate your child into family traditions. We often decorate a gingerbread house, and then allow Mr. D free reign as soon as we have snapped a quick photo. We hang stockings for weeks in advance, and then fill his with fistfuls of shredded colorful paper — a messy but fulfilling gift for him (see gifts, above). The tree is an area of great challenge for us. It is beyond tempting with its twinkling lights, string-like garland and dozens of shiny objects. Though I grew up with a real tree, it has become more practical to use an artificial one. We pull it out on the 24th, and fill it with non-breakable ornaments, most of which we have made by hand over the year.  The morning of the 26th, it is down — one less inanimate object in the house to worry about. Rethink the Photos and Memories This might be the hardest part, but also the most significant. If you are able to manage a disability-friendly photo session near the holiday, then it is worth it.  Either way, you will still want to capture the moments you can during the actual celebrations. Because part of the holidays for your family is actually remembering them. After you have made a plan to master the holidays for your family, do you need some time for yourself? Check out these ideas here and here.

Lara Sandora

Tips for Choosing Autism-Friendly Holiday Decorations

Why do you need autism-friendly decorations? If your child has a diagnosis of autism or related challenges, it can mean you likely are spending more time in your home than you may have thought possible. So why not make it as festive as you can? If your child is like mine, the wrapping paper and ribbon is more exciting than the gift inside, which can mean that “decorations” in a traditional sense may not last long without being ripped, torn, “borrowed” or otherwise destroyed. If you have all but given up on decorations, but you’re tired of missing out on all the fun, here are some things to try. So unleash your inner Pinterest party-planner and try these ideas for autism-friendly decorations. Aim High If you have trouble with decorations being “stolen” from tables, shelves, and other lower surfaces in your home, then look up. Rethink using door frames, chandeliers and other higher surfaces to display festive items. You can even use the ceiling. I use the shiny, yet unbreakable and hollow ornaments from my local craft store.  I have a set of hearts, shamrocks, decorated eggs and tree ornaments. I thread some clear, plastic thread or fishing wire through the loop and display them. (Let me know if you find some turkeys!) Think Strings Garlands of beads, fringed foil streamers, strips of colorful crepe paper. All of these options are great choices because they not only can be hung from the walls and/or ceiling, but they can also make great sensory items once they have been removed. Pro tip: If you think it will be really tempting, buy two — one to hang and one for play. Go Squishy If you start looking, you will find that there are dozens of squishy, soft, and stuffed decorations for pretty much any holiday you may celebrate. Squishy heart? Check.  Squishy snowman? Check. Squishy bunnies? Check. For decorations I place on lower surfaces, I stick with not only unbreakable choices, but also ones that are meant to be picked up, touched, tossed and run with. (Downside, my son’s current obsession is with throwing stuff in the pool — not exactly the best combination, but certainly not the end of the world). Inflate Something You can buy a range of inflatable decorations for many holidays. These also have the advantage of not being breakable (though some may pop more easily than others). Additionally, inflatable items are lightweight, so potentially can cause less damage to other items or people in your home. Balloons are another great choice — either a themed, festive mylar design, or a bevy of traditional ones. You don’t really even need helium — just some lung power to make a carpet of balloons in a festive color palette. Balloons are a low-cost, high-impact way to celebrate almost anything. Bonus: Attach lengths of curling ribbon to each balloon for extra sensory fun and enjoyment. Choose Edible Safe, edible decorations are another category of decorations that works well for lower tables and shelves. If your family has the discipline to have a non-breakable, festive candy bowl on the table (and your child won’t try to eat the wrappers!) then go for it. We have had more luck with decorating gingerbread houses or other cookie displays to add a festive touch that is theoretically meant to be eaten. Trader Joe’s often has items for Halloween, in addition to the winter holidays. Be Flexible Lastly, just remember to be flexible. If this means you put up your tree at night, after your child with disabilities is in bed, then do that. You may have to forgo the holiday music while you decorate, but at least you’ll get a moment to enjoy the tree before it is, um, “redecorated.”