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Dad’s Role in Back to School Transition

As the summer swiftly winds down and families transition back into a school schedule, parents often settle into roles depending on their individual strengths and partnership style. Perhaps it is Lead Paperwork Organizer, Transportation Facilitator, Supply Coordinator, Head Chef, Morale Booster, or a combination of all the above!

Thinking about the roles we fulfill as part of family organization prompted me to reach out to Louis Mendoza at the WA State Fathers Network to learn more about a particular perspective: Dads! Louis had so many great things to share, so I wanted to share them with you as well. Here are some highlights from our conversation:

Jen: To start out, can you tell me a little bit about the Washington State Fathers Network?
Louis: Sure, the Father’s Network got started in 1978 and was actually an assignment to a couple of grad students at UW. It kept going as a network and later in 1985 they were looking for a new home and wound up at Kindering. At one point it was the National Fathers Network, and over time it shifted focus to Washington State. Now there are chapters all over the state, including Seattle, Bellevue, Bothell, Chelan, Spokane, and Everett. Basically the network connects fathers of children of any age with special health care needs with each other, and connects them to resources, information and education to assist them as they become more competent and compassionate caregivers for their children. The connection component is done by introducing dads to other dads through meetings, social events like camp-outs, pancake breakfasts, poker games, or a super bowl party. Some events are specifically for men and some for the whole family.If we have a father call for a specific need, we will help him with that need. Other times I send out information to dads that would be beneficial, like workshops or events. Recent examples include a soapbox derby race geared toward children with special health care needs, or local theaters and museums with low sensory events.
J: That sounds great! Why do you think there is a need for Dads groups, and particularly Dads with children who have special health care needs?
L: Each parent–mom or dad–brings their own strengths and perspectives, but some general things bring dads to the network. One of those is the issue of how they get support. Generally, between the mom and the dad, mom has a better social support network, and she more readily taps into it for emotional or logistical support. Dads don’t tend to have as strong of a network, and if they do they don’t tap into it for this purpose. So one issue is, how do we bring dads together so that they can talk to other dads who get what they are going through? Dads can tend to think of themselves as independent, strong, resilient, self-reliant. This can lead them to think that they don’t need support or maybe even to refuse it. Often times it’s the mom who realizes that the dad needs support and she encourages him to seek out help.Dads can also tend to see themselves as problem solvers, but the needs of their child are sometimes not something they can solve. They need to work through that to get to a point of understanding what can be addressed through things like education and therapy, and which things can’t or don’t need to be fixed–it’s just who their child is. Talking with dads who have been through this can help, especially if you are a new parent to a child with a new diagnosis.

J: Yes, that definitely sounds familiar. Are there common issues that come up with dads that you meet?
L: An issue that comes up for a lot of dads is the issue of being included in the life and care of their child. This is mentioned often in regards to education and medical institutions. It not only has to do with being invited to those meetings but also being intentionally included in the conversations and decisions that are being made. For example, in regards to school, dads can feel left out. If they’re not invited they need to insert themselves into the process. As the school year begins they should talk with and work with their partner about getting ready and organized for the school year, reviewing the Individualized Education Plan (IEP), discussing what the teacher needs to know about their child and being part of those conversations when they happen. It’s important, as much as possible, to be part of the whole process. It may not be  immediately evident, but the child really does benefit from dad being involved. In so doing, Dads are setting a nice example for their own and other families and educators. It sets the framework for being involved.

J: You wrote a great article that talks about that very issue. I like how you incorporate the family as a whole while recognizing some the unique needs of Dads. How did you get involved with the Fathers Network and Kindering?
L: I became familiar with Kindering when I was a para-educator in the Northshore school district. Some of my students went there, and I was introduced to the agency by a parent. I eventually served on board subcommittees, and when the former director, Greg Schell, retired I was approached for the position.

J: What is your favorite part of this work?
L: The thing that I really enjoy the most is the unexpected places and unexpected people that the job connects me with. For example, working with organizations that I didn’t know I’d have the opportunity to work with in order to advocate for dads and their children. Another example–one of the exciting things I’m working on right now–is bringing other dad organizations in Washington State together to work cooperatively to serve more dads and serve them better. These organizations include Dads Move, WA Dads, and DADS.

J: Thank you so much, Louis!
L: Thank you for the opportunity!

Visit the website to learn about events, chapters, and other stuff happening in the network. Check out the upcoming WA State Fathers Network Conference: Raising Awareness to Empower Fathers. You can also join the mailing list for a monthly email update, and follow on the Fathers Network on Facebook.

Tags: Back to School   Dad   fathers   Fathers Network   special healthcare needs   Special needs   Washington state   

Go from school to summer with ease!

Summer break, for students, is often a beacon of freedom from homework, alarm clocks, bus routes and more – and I know many adults who look forward to a respite from those things, too! Washington State has so many beautiful places to explore with children of all ages, and summer can be an opportunity to create wonderful memories of experiencing the natural world…and maybe a water park or two.
But for many families, summer also represents a vast unknown: where will my child go while I am at work? How will we supplement the free/reduced lunch we rely on? What learning will be lost during those months of unstructured time?

While some of those questions can be answered with a robust network of summer programming, such as Boys and Girls Clubs, YMCA, and Summer Meals, there are other gaps in resources that remain challenging. I have experienced the summer gap with both joy and trepidation as the parent of children who have special health care needs. In Washington State, there are hundreds of thousands of children with disabilities receiving support services through our public schools. For many, school is the primary place to access important resources such as speech therapy, occupational or physical therapy, social skills groups, and behavior plans. So what are some things families can do during those summer months?

These resources provide more information about summer opportunities for young people with disabilities or special health needs:

An annual directory of summer camps in Washington State is available in both digital and print versions. If you access it online, you can search for camps by location, time frame, special needs considerations, and more.

Extended School Year, or ESY, is the continuation of some special education services through the summer based on a student’s IEP.

For ADA-accessible trails, the Washington Trails Association has a wealth of information about locations throughout the state for your next family trip.

Lifespan Respite of Washington offers information and resources for caregivers seeking respite options.

One thing that I have found helpful for my family is to create personalized social stories that feature pictures of us and the activities we anticipate happening over the summer. The story can be a daily routine or a special event. Read more about social stories.

For my family, it feels like we have only just gotten the hang of establishing a somewhat predictable summer routine – and my kids are nearly teenagers! If I could give myself one piece of advice back when they were little, I would say to plan for what you can, count on a few surprises, and make sure to enjoy it in the moment. I often hear from other parents how pressured we feel to “maximize opportunities” for our children. While supporting growth and development is important, I think it is also okay (and necessary) to allow for some unstructured time – even boredom!

Have a happy and healthy summer – only 84 more days to go!

Learn more about Jen’s role as a Family Support Coordinator.

Tags: ADA   children with special needs   summer   summer meals   

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 power in Central Washington

In my previous blog entry, I wrote of the importance of community for individuals and families who experience a special need or special health care need. To follow up on that topic, I’d like to explore a little bit about what components we can look for or cultivate in creating and sustaining community.  As a parent and a professional, something that I often find myself doing is looking for existing strengths as an opportunity to build community.  For a child, this strength might be a hobby or game, such as Minecraft: that’s definitely something kids can come together around!  For a community, an existing strength might be a fantastic parks system or even a parent network.
Recently I had the opportunity to spend some time in the beautiful Central Washington city of Moses Lake as part of a state-wide series of trainings for primary care providers and community outreach professionals for our work with children and youth with special health care needs. These trainings are in collaboration with the Washington Chapter of the American Academy of Pediatrics. During my visit to Moses Lake, I found a great deal of community strengths for positive child development! From Birth to Three, to Family Services, to Integrated Services, to Inspire, there are many local resources available to families.  It was wonderful to see how these agencies work together to support a community of families and the people they interact with, such as teachers, home visitors, speech and occupational therapists, support groups, recreation groups, and medical providers.
One community member that I had the great pleasure of meeting is Deborah McVay, also known as the Library Lady.  In her outreach role with the North Central Regional Library, she has been facilitating connections between families and agencies for over 20 years over several counties in Central Washington.  She has a wealth of long-term community knowledge that helps strengthen the families she works with, and in turn strengthens the community.  It is an important mutual relationship, especially in a region where communities and individuals can be less connected geographically. Deborah bridges that distance with her outreach.  She also works as a liaison between families who are new to the language and region, and helps them prepare their children for school.When I asked her what she thinks makes her work so successful, she answered

“Families trust me, they know me.  I might come for story time and also show them how to help their kids become more ready for kindergarten.  For example, if they are making chili for dinner, I encourage them to cut out pictures from the newspaper to make a grocery list that their children can participate in.”

In this very accessible way, Deborah is finding the existing strengths in her families and fostering tools for early literacy.

Another example of individuals acting as community liaisons are the proprietors of the Red Door café. The Red Door is a welcoming space for the community at large, as well as a space for groups such as Parent to Parent and the Down Syndrome Society of Grant County to gather and build individual, family and community strength. In my conversation with co-owner Lisa Boorman, I learned about how the community has grown over the years in terms of what families can access for support, and how some of the larger structures such as the School District and the Boys and Girls Club are becoming more inclusive of ability diverse kids and families.

Afterward, while riding the public bus through town, I learned from the bus driver/informal tour guide about the newly built Community Services Office and all the important services that individuals and families can access under one roof: food benefits, developmental disabilities administration, financial assistance, and more. It was a great example of how something that could be perceived as a challenge – a smaller town with less infrastructure than bigger cities – is actually a strength. The tight knit network of community members and service providers within this rural community facilitates a feeling of no wrong door. Whether you are at the library, school, pediatrician, café, and yes, even on the bus, the chances are good that someone knows how to get you connected to support.

When a community comes together in solidarity and support of its members with special needs, everybody benefits.  As this season of gratitude and generosity begins, let’s try to think about how we can connect with our community in a more intentional way and create space for all families to succeed.

Tags: Child Development   Community Health   families   Washington state   

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


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

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