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Have a happy, inclusive holiday season

Holiday gatherings, for me, are filled with so many things that I love: a chance to be close to people I don’t often get to see, lovely decorations like bright twinkling lights, festive music, delicious and special foods, and a divergence from the usual routine of work and school.  However for my son, that very same list translates to a barrage of sensory and structural chaos that can be overwhelming: the unfamiliar people vying for hugs, the visually distracting lights and decorations, the loud (to his ears) music, the strange foods, and the variance from the comfort and perceived safety of his established daily routine.  This can be hard for family and friends to understand, especially when these aspects of the holidays can seem so essential to the season.  It can be a difficult gap between experiences to try and reconcile as a parent or person with autism or other sensory processing issues.  We want to be a part of these special occasions, but we also want to mitigate potential melt downs resulting from sensory overload, and the physical and emotional fall-out associated with them.  Often this results in opting out of many meaningful celebrations, but it shouldn’t–and doesn’t– have to be that way.
After many years of spectacular wipe-outs (and wins, too!), here is my short list of holiday coping strategies that I have found useful for my family:
Know your exits

It may seem counterintuitive to start out a list about participation with an escape plan, but this has always been at the core of my family’s own success in holiday festivities.  Whether it is a lighting ceremony, dinner, performance, party, or even a photo shoot, we make sure that we plan our exits in advance.  We talk out scenarios like needing to duck out of an event early (where are the least disruptive exits?), coping with impending melt-downs (where is a quiet space we can go?), and reconvening if we get split up (is there a place nearby to hang out?).

Another reason to know your exits is for the safety of containment: if you have a child who is skilled in the art of elopement, then knowing the potential escape points can help you troubleshoot in advance.  My son has fled the scene of events a few times when things got overwhelming.  We were glad that we knew where he could and would go, so he was not lost in an unfamiliar place.

Communicate in advance

To the extent possible, include your hosts and relevant attendees in on your situation.  Reactions of course vary, but often I have found disclosure met with compassion.  Gratitude and explanation can go a long way toward making a space more inclusive. For example, “We are so grateful for the invitation to great-aunt Tilly’s dinner party, and here are just a few things that would really help Joe feel comfortable”.

Enjoy specialized events

When my son was very young and very squirrely, I had the great luck of finding a holiday photo opportunity that met him where he was at, rather than having him fit into a situation that really wouldn’t work.  One example of an inclusive adaptation to tradition is Caring Santa, an event that allows appointments to be made in advance, making it easier for families to prepare for, as well as an opportunity to participate among families who are going through similar experiences.

Other events to enjoy during the holidays and year-round include special opening times for museums such as Seattle’s Pacific Science Center and Olympia’s Children’s Museum,  sensory-friendly movies, and even just going to the park.

Be kind to yourself

Holidays can be fun but they can also be stressful.  Be as kind and empathetic to yourself as you are to those you love.  It can be hard not to want to live up to a social ideal or norm of what the perfect holiday experience should be.  Employ your skills of calm breathing, and be prepared to change things around if it feels like a situation just won’t work.  We have tried a lot of different events in my family, with a lot of different results.  The successful ones we incorporate into our holiday routine, and the others we let go – and perhaps try again another time.

Families are like snowflakes

The snowflake might be an over-used analogy, but I do believe that it reflects the unique and individual qualities – within and among – families.  Together families share many commonalities of cultural tradition, but individually we can and should enjoy and express those traditions in the ways that fit our families best.  Pickles, olives, and macaroni and cheese may not seem like a joyous holiday meal to some, but to my son it brings unwavering delight.  We may not sit through an entire production of the Nutcracker ballet, but we enthusiastically and meticulously line up our collection of small nutcracker statue over and over again throughout the season…and sometimes longer.  Participating in these cultural touchstones brings me and my family joy, and sharing our experiences with others helps promote a wider understanding of the importance of inclusion.

Enjoy your holidays!

Tags: Autism   Child Development   families   holiday activities   holidays   inclusive   special needs kids   

Community connections for children with special health care needs

I have two children, both of whom occupy varying points on the autism spectrum (often depending on the day) with some other health issues thrown into the mix.  As they have grown, so have their amazing personalities; so have the challenges.  I suspect it is not all that different for parents of typically-developing children.  Community can be particularly important for families with children who present unique challenges (and skills!) beyond the usual antics.  However, for reasons from accessibility, to awareness, to stigma, those challenges/differences can be isolating.

Children and youth with special health care needs are those who have or are at risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services beyond what children generally require.  For example, a child who has a developmental disability such as Down syndrome, as well as asthma or allergies, would be considered to have a special health care need.  Another example might be someone with ADHD and diabetes.  In Washington State, an estimated 235,920 children and youth under age 18 have a special health care need – that is 15% of all youth.  Connection to health care, education, community, and family support are important factors in the quality of life for individuals with special health care needs and their families.

One important resource for children and families with a diagnosed or potential special health care need is Early Intervention, which is a system of services that can help infants and toddlers with disabilities or delays to learn key skills and catch up in their development.  For children from birth to age three, Washington State Early Intervention providers offer free developmental evaluations and support services like speech, physical, or behavior therapy.  These services “are designed to enable young children to be active, independent and successful participants in a variety of settings.”

In addition, Washington State has a robust and active family network of support when it comes to children and youth with special health care needs.  From Parent to Parent, to PAVE , to the Father’s Network, caregivers with personal experience navigating the emotional and logistic complexities of special health care needs are an important resource.  Whether you are just starting out on your journey, or have a question relating to a very specific diagnosis, chances are there is another family out there who has been down a similar path and can offer some experiential advice.

Raising children is hard and beautiful and humbling.  It is a deeply individual, personal experience while at the same time having the capacity to be incredibly unifying.  Parent and caregiver networks, supportive clinicians, and educational advocates have proved invaluable in my own journey to empower myself and my children to thrive and contribute as members of our local community.  Working at WithinReach, I have the opportunity to help other families thrive, too.

To find out if your child would benefit from early intervention, ask your primary care provider or call our specialists at the Family Health Hotline (1-800-322-2588). This statewide, toll-free number offers help in English, Spanish and other languages.

You can find out more about peer support networks by calling the Answers for Special Kids line at 1-800-322-2588 or by visiting www.ParentHelp123.org.

 

Tags: Autism   Child Development   Developmental Screening   Early Intervention   Family Health Hotline   ParentHelp123   Special needs   Washington state   

Do You Believe in Magic?

Dr. Paul A. Offit’s book Do you Believe in Magic? The Sense and Nonsense of Alternative Medicine examines the $34-billion-a-year business known as alternative medicine. Dr. Offit is chief of the Division of Infectious Diseases and director of the Vaccine Education Center at the Children’s Hospital of Philadelphia, and a vocal advocate for immunizations.

Dr. Offit understands the allure of alternative medicine and begins with the story of his own disappointing experiences utilizing the modern healthcare system. He gets multiple incorrect diagnoses, including one which led him to believe he was dying from a fatal illness for two years. In another incident, he awoke from what he had been assured would be minor knee surgery to learn that it had been a major surgery which would take a year to recover from. Offit says, “the miscalculation didn’t seem to surprise or upset the orthopedist. But it upset me.” Through misadventures and mixed advice, Offit looks into the chasm between modern and alternative medicine.

Offit argues that the popularity of media celebrities who promote alternative therapies, such as Dr. Mehmet Oz, comes from their offer of “an instruction book for something that doesn’t come with instructions: life.” These superstars, as he calls them, claim that following their advice will enable you to live longer, love better, and raise happier children. Who doesn’t want the playbook for how to live life? Unfortunately, this playbook is often full of medicine that doesn’t work.

One chapter is dedicated to the myth that vaccines cause autism, a belief propagated by celebrities like Jenny McCarthy. Offit doesn’t fault parents for searching for a cause for their child’s autism. He understands how easy it is for parents to believe in untested theories and describes how the unfounded fear of vaccines has allowed a resurgence of vaccine-preventable diseases in the United States and incited parents to fear vaccines more than the diseases they prevent.

Part of the appeal of alternative medicine is that it is personalized. Offit acknowledges that modern medicine often leaves a patient feeling more like a number than an individual. He recognizes how the fluidity of modern medicine can be unsettling, highlighting that many alternative medicines have remained unchanged for hundreds even thousands of years, which begs the question: Haven’t we increased our knowledge of human anatomy and disease over these years?

The continual evolution of modern medicine should be comforting. We are constantly learning and applying that knowledge to medicine, which in turn adapts – resulting in new and changing treatments and recommendations.

Paul Offit is a supporter of medicine that works – he does not discriminate against type of medicine, whether alternative or conventional, he only distinguishes between medicine that can be proven to work and medicine that only pretends. Offit argues that proper evaluation of all medicine is paramount. With over 40 pages of notes and selected bibliography, Offit uses the platinum standard in scientific reasoning—a case-control study—to make his point. If the treatment proves to make a difference in comparison to its control than he simply calls it medicine that works. Summing up the timely takeaway message of the book, he writes:

 “Although conventional therapies can be disappointing, alternative therapies shouldn’t be given a free pass. I learned that all therapies should be held to the same high standard of proof; otherwise we’ll continue to be hoodwinked by healers who ask us to believe in them rather than in the science that fails to support their claims. And it’ll happen when we’re most vulnerable, most willing to spend whatever it takes for the promise of a cure.”

Tags: alternative medicine   Autism   Dr. Paul Offit   immunizations   preventable diseases   Public Health   vaccines   WithinReach   

Prevention Matters: Vaccination and Developmental Screening Give Kids Best Start

When it comes to our health, we often have a natural tendency to focus on what we don’t know. This can be unhealthy and unproductive, especially if the body of literature about what we DO know is strong. One example of this is the unfounded fear that vaccines cause autism, an issue that relates to multiple bodies of work here at WithinReach.While much is unknown about the cause of autism, an overwhelming body of research refutes a connection to vaccines. In 1998, a falsified report fueled mistrust in the MMR vaccine. Before it was clear that this information was falsified, the scientific community set about researching the purported connection. The results? More than 20 high-caliber studies have refuted any connection between vaccines and autism.

Science implores us to never use the results of one study to make a claim. We use individual studies as calls for future inquiry, which is exactly how we ended up discounting the vaccine-autism connection: other scientists attempted to replicate the findings, and none could. So, what do we know about promoting optimal health in children? Health happens when you make a series of choices proven to have results. These choices include vaccinating as well as another priority at WithinReach: regularly screening children for developmental and behavioral concerns. Autism is a form of developmental delay. While we don’t know how to prevent autism, developmental screening is an accurate way to identify children with autism early, when interventions and treatments are dramatically more effective. In addition, screening is an ideal tool for teaching parents and caregivers about what typical development looks like and how they enhance development on a daily basis.

At WithinReach, we make the connections Washington families need to be healthy, and we don’t want parents to fall victim to false dualisms that create a cleavage between choices you need to make for your family to be healthy. When we focus on what we do know—in this case that vaccines don’t cause autism and that developmental screens create healthier kids throughout their lives—the outcome is a healthier and more vibrant community.

Tags: Autism   Child Development Screening   Vaccinations   

Working to Make Vaccines Everybody’s Business

This week I attended the screening of the documentary “Everybody’s Business” with our Immunization team. This screening came after the CDC’s annual release of data about immunization practices among children under age three.  The data shows that in Washington just 65% of children in this age range are fully immunized per the recommended schedule, versus a national average of 68%, and a national goal of 80%.  So, we’re behind no matter what metric you use.

The documentary provided a glimpse into the real world debate about vaccination through the back drop of Vashon Island. Vashon has one of lowest immunization rates in the state of Washington. The documentary did a terrific job of laying out the struggles that families are facing. However, at the core of the debate was the sincere desire of parents to protect their children.

It raised a central question for me–where does the individual right intersect with the greater good? This is a hard debate, made harder by the fact that every Mom, Dad, Grandma, Grandpa, Auntie, Uncle is trying to make the best decision support the growth and development of their children.

At WithinReach, we know that, like everything in life, vaccines carry some risks, but not the risks the anti-vaccine movement often claims.  Vaccines do not cause autism or other developmental delays, they do not contain toxins, and the so-called ‘alternative schedules’ only increase risk.

Let’s not forget, ALL of us are at increased risk of contracting vaccine preventable diseases, and even if we’re vaccinated, children who are too young to be immunized and others who are immune-compromised (people with diseases or the elderly, for instance)  are particularly at risk.  We’ve seen several cases of measles in the state this year; pertussis and flu are persistent problems too.  These can be deadly to anyone with vulnerable health status.  I remember when I was nervous about giving my 8 week old baby his immunizations and the nurse said,“We live in a port city, your child is going to be exposed to so many things, help minimize his risk, get your immunizations.”

At WithinReach, we do not think it is okay that only 65% of kids are being fully vaccinated. For years we’ve been working on ways to increase parent education and action to make sure kids get their immunizations. Over the last couple of years we’ve gotten even more serious. We’ve been working with several other key community advocates through VAX Northwest: Group Health, Seattle Children’s Hospital, the Department of Health, and BestStart Washington to launch two initiatives with the goal of making timely immunization the social norm again:

The Immunity Community mobilizes parents who value vaccines (as most do!) to increase the positive chatter about vaccines in places where their children spend time: schools, child care centers and preschools.  This pilot project recognizes that parents obtain information through social networks, so immunization-positive chatter needs to be present in these conversations (typically anti-vaccine people are the only ones who make themselves heard).  We’re testing this approach at many sites in the Northshore area and in the city of Bellingham.

The Let’s Talk Vaccines project recognizes that parents most often make their immunization decisions based on the advice of their child’s health care provider, but providers often go about immunization conversations the wrong way.  When parents are stressed or concerned (as they often are about vaccines), they respond more strongly to empathy than they do to hard science.  So, this intervention teaches physicians to lead with empathy, attentive listening, and unifying around common goals (healthy kids)—all with the goal of building trusting relationships.  Once trust is firmly established, parents are more likely to listen to their physician about ANY topic, but particularly vaccines.  We’ll have results from this study in early 2014.

Vax NW has raised over $1.5 million to support the projects above. And we’re not just trying these things out–they are part of a rigorous evaluation process to see if it really works. I’m super proud of this work, and to be a national leader in our efforts.  As we head into flu season, I hope you are doing your part to keep Washington healthy.

Tags: Autism   Everybody's Business   Immunity Community   immunizations   Pro Vaccine   vaccines   Vashon Island   Vax Northwest   

Jenny McCarthy Co-hosting The View: What’s the Problem?

Media and vaccine circles have been buzzing about Jenny McCarthy’s new job as a co-host on The View, as announced by ABC last week.  Many articles about her appointment have featured her questionable (and certainly scientifically unfounded) positions about health and wellness, the most prominent being her belief that vaccines cause autism.
Why all the fuss?  Because the immunization community, which includes us at WithinReach, had made progress in turning the tide away from those false claims.  Now we worry that we might have to begin the struggle anew, and we know that the well-being of the nation’s kids depends on continued high rates of immunization—as evidenced by epidemics of pertussis, outbreaks of measles (three cases in Washington so far this year), and the persistence of influenza as an annual threat.
McCarthy went to, in her own words, “the university of Google” to better understand her son’s autism diagnosis, ultimately arriving at the conclusion that it was caused by a vaccine.  She has been an advocate for unproven, potentially harmful alternative treatments for autism and more research into the connection between vaccines and autism.  She has engaged many forums, including The Oprah Winfrey Show, Larry King, and Generation Rescue, to promote her position to the masses.
The problem?  There has never been a demonstrated link between vaccines and autism, despite dozens of studies attempting to find such a link.  The bigger problem?  Lives and wellness depend on people understanding how and why immunizations work. The ultimate price is paid when people become sick or die because they don’t immunize.
Jenny McCarthy’s commitment to her son is admirable.  She is only trying to do what’s best for him, which all kids deserve from their parents. But those of us in the field of health communication struggle with the reality that in today’s soundbite culture, repetition and high volume are mistaken for scientific truth.  No matter how many times McCarthy claims that vaccines cause autism, it simply isn’t true.  But a well-liked and well-known personality can trump science, especially on an emotional issue parents are nervous about.
I am pleased with how the national immunization community has responded to McCarthy’s new position.  They haven’t vilified her, haven’t attacked her character, and haven’t held her past against her—this despite the mountain they’ve had to climb to refocus the public’s attention on the truth about, and benefits of, vaccines.  Instead, the national immunization community has decided that it will wait at the ready in case she makes further false claims, at which point they’ll mobilize in the way they always have: with scientific evidence, patience, and an unbending commitment to the health of all Americans.  The immunization program at WithinReach will do the same because we want all Washington families to be healthy.
**If you are worried about your child’s development, connect with our Help Me Grow program for a free developmental screening and access to community resources.  And if you are looking for trustworthy information on autism, try the American Academy of Pediatrics or the Autism Science Foundation.

Tags: Autism   Immunization community   immunizations   Jenny McCarthy   vaccines   View   

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