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Autism and Coping Tools for Parents- Part 7 Sweet Surrender

Welcome to Part 7, our final blog in a series of parent coping skills. Surrender. What a loaded word.  It implies giving up, laying down your arms, losing the battle.  Surrender  was the last thing on my mind when my son Arthur was first diagnosed with autism at age 2. 

 

Every turn from the moment he received the diagnosis was an epic battle. Fighting for ABA coverage, jockeying for a “good” school placement, baffling over why state and federal disability services were frozen, and poring over information about this complex disorder. What did it mean for Arthur and our family?  Not to mention grappling with my own grief and white-hot fear about my young child’s future.  Doctors reminded me, prognosis was impossible.  At 18, will he be able to tie his shoes or drive a car?

Surrender? Are you kidding me? I was shaking my fists, stomping my feet, rattling cages, pressing 0, and taking names.  I was a fierce warrior for Arthur.

The complex details, denials, misdirection, confusion, and inability to know if what we were doing was making any difference left me overwhelmed, defeated, and depressed. All this energy, pain, and struggle to meet his needs and our little guy seemed to go more inward with each passing day. 

Before I had Arthur, my friend Diane and I would call each other daily to talk about our daughters, both infants at the time. I’d still be in my bathrobe at 2:00 p.m. reeling from a morning of fussy baby, poopy diapers, sleep deprivation, and wondering how yogurt got on the ceiling. We’d share honest moments about how incredibly hard this new mom thing was and how our 40 hour a week jobs were so much easier.  Our conversations predictably evolved to how beautiful and amazing  this new little person was and how we both just need to surrender to the Cheerios gathering next to the dust bunnies in the corner.  We’d end our regular phone conversations with a simple “surrender” reminding us both to turn towards and embrace our new lives.

So a few years later when I was told our new baby boy had autism, I wondered how I would apply my once-effective surrendering strategy when fighting seemed like the only option to get anything done for him. It was impossible to feel calm or surrender to anything.  I was in a constant state of urgency.   

Intellectually, I knew it made sense to find peace in the face of so many unknowns. Why break myself against what I clearly could not control or change.  I knew I’d be happier if I just let go of my tight grip on impossible circumstances.

My anger would not make my insurance plan cover ABA. My despair would not help Arthur begin using language and my fear for his future was getting in the way of me enjoying him in the moment. 

Unfortunately, I could not close my eyes and will surrender to just happen. So I began my quest to accept what I could not change. I read books with titles like, Go to the Places that Scare You and Comfortable with Uncertainty. I soaked up what I could learn from other parents and adults I met with autism. I was beginning to see that the peace that comes with surrendering surfaces with time and deliberate attention-as the end-result of a long and reflective process – along with some hard work. I also learned I might not achieve permanent surrender but I could strive for moments of it.

Surrender does not mean less work or halting efforts to help my child reach his potential. I will continue to seek effective therapies, interventions, appropriate education, community participation, and I will continue planning for his future.   I just might be a little more “chill” about it.    

I pause, appreciate, and celebrate my son’s unique personality and the many gifts he offers the world.  There is always a rich reward when I pause. For example, tonight, as I write this, Arthur is in his room singing along with Karen Carpenter. What 17-year-old boy in America listens to The Carpenters? Mine does and he’s belting out Close to You at this very moment. It’s delightful. He’s delightful. Moments like this give me the rocket fuel I need to propel my way through the inevitable work it takes to meet his complex needs. 

Surrender also meant I stopped riding his challenges and bad days so closely. I can feel sad for him and pain when he suffers but ultimately, it’s his life. It took me years to develop what I have come to call a loving healthy disconnect.  It’s much easier with typically developing children but I would argue just as important for our children with developmental disabilities. I need to be a steady bow. I will need to let him go. That arrow needs to fly!  Easier said than done. I’m still working on that one.

dogLastly, there’s an object in my kitchen windowsill. I see it every time I do the dishes, reminding me what surrender means to me. That object is a little Fisher Price dog that I found in my son’s shoe when he came home from school when he was 5 years old. That beat-up wooden figure had been in his shoe all day. Arthur did not have words at that age. No one knew. No one could help. It must have been so uncomfortable. His toes were bruised. He suffered and I could not help him.  I cried because it represented so much about the entire journey with autism up to that point.  Later that night as he took his bath, I looked at my beautiful and unique little boy enjoying his bubbles. He was ok. More than ok! He seemed perfect at that moment and I felt pure joy.  So, the dog went in the windowsill to remind me to look beyond the struggle – even his struggles – to let go of what I can’t control.

I will not always know how to help him. He might not continue to improve, he will face hardship, others will care for him, and I’m pretty sure he will not be a Major League Baseball player or a Supreme Court Justice. I’ll do my best and that won’t be good enough sometimes. And that’s ok. I surrender. Wholeheartedly. 

Autism and Coping Tools for Parents Part 6: Patience

Tricia is known at Seattle Children’s Autism Center as “the saintly mom of triplets”, two with ASD, ID, and significant behavioral challenges. While we’ve observed her demonstrate all our previous parent coping tools, we asked her to share with us the one we know her to be an expert in: patience!

 

 

Q: How do you define/describe this parenting tool? In your own words, what does it mean?

A: It means that you need to stop and think before you reactively say something or do something and remember that they’re not doing (insert challenging behavior here) willfully. It’s part of their disability. You won’t be able to be patient all the time because you aren’t perfect. No one is. But you can try each time and the more you try, the more it becomes your norm.

Q: How did you discover this tool for parenting kids with ASD? Did someone teach it to you? Did you see other parents modeling it for you?

A: I think it is partly genetics and partly the way I was raised. From the time I was twelve, we had elder relatives living with us who had medical issues. This had a big impact on me in that I saw my mom care for them with such patience. She taught me that this is what you do. Family members take care of each other and that requires a lot of patience. Having triplets by definition meant I had to be patient!

Q: How has this tool lessened your stress or made life a bit easier for you?

A: Being patient definitely lessens your stress. Getting worked up into a heightened state affects your mental and physical health. It also affects the vibes in your house and how your kids with autism and others relate to you. They feel your stress. If your kids are stressed, someone needs to stay calm. Patience helps you keep your cool and think much clearer.

Q: Did you find that the more you used this tool, the better you got at it?

A: Yes. In those early days, when things were new and I just wanted answers to help my kids be more capable, it was hard to be patient. You just want to help them as much as possible. As you go through the years though, you realize that nothing happens quickly – from getting return phone calls to accessing services. I learned that being calm and respectful worked better. If you’re impatient and rude, people may not want to work with you.

Q: What else would you like us to know about this parenting tool?

A: You can’t expect to be patient all the time. There were plenty of times I was not proud of myself for things I said or did. There were times when I felt I couldn’t take it any more when all three were upset. We’re only human.

It’s challenging to have patience with people in public who are rude. I often try to educate them and thank people who do try to understand. We recently went on vacation where the hotel room had the beds on right side of the room and one of my kids insists beds be on the other side. The staff was very patient and accommodating in getting us another room. I always show my appreciation and gratitude. When we go to the car-wash, a favorite activity, some people are patient and understanding and others are not. I explain that my son is not being rude – he has autism. I hope that doing this makes it better for other families who might be in the same situation.  I have come to accept that they are where they are and we might get some progress but being impatient isn’t going to help them progress or make life easier. Being impatient will only make it harder for all.

I also think that for siblings without ASD, it is a valuable lesson for them on how to deal with people throughout their life. My son without ASD used to freak out when his siblings would tantrum but he’s gotten much better. This is something that will serve him in life.

For parents new to diagnosis, remember it’s a journey. Patience will come with time as you get to know how ASD affects your child and what battles you want to fight and what’s best for your mental health to let go of. Believe that they (to whatever extent) will make progress and you can’t rush it or force it. We can do lots of things and not see quick or noticeable progress. Don’t give up. Move on. You will learn to know when it’s good enough. You can’t force it and can’t fight it. You have to be realistic. If you’re unsure, ask for help from your child’s providers.

We’d like to thank Tricia for sharing this parent coping tool with us. Tricia is also featured in the September 2016 issue of Reader’s Digest.

Autism and Coping Tools for Parents Part 5: Humility

Most new parents will admit that no matter how prepared they felt going into childbirth, once baby arrived they realized just how much they didn’t know. Thankfully, there are abundant parenting resources to be found to help with everything from colic to diaper rash.

 

Parents of kids with autism however, get the award for “most humbling” parenting, as our learning curve is Grand-Canyon steep. We’ve yet to see a How To guide for handling the  daily dilemmas that autism brings.

Before autism, I was quite organized and thought that if I planned and worked hard enough at something, it would all work out. Was I ever surprised to learn how unorganized my life had become and that no matter how much I put my mind to the challenges, things often didn’t work out as hoped or planned. There were days I’d be reduced to a puddle of tears in the middle of my kitchen floor. As a social worker, I was skilled at locating and navigating resources for others but when it came to my own child, I found myself humbly amongst scores of “regular old parents” trying to make sense of confusing, hard-to-access services.

As a busy parent, you may not have time to see the benefits of humility but I assure you – they are there. Here are some that I’m aware of.

Realizing you don’t know it all  . . .

  • Allows you to ask for help, a good thing to learn, particularly early on in the diagnosis
  • Allows for curiosity, always helpful when trying to figure out our kids
  • Allows you to build a team for you child and your family- this is a team effort
  • Allows you to continue to ask, research, read, and explore possibilities
  • Allows you to share the difficulties and the successes with others
  • Allows you to become a skilled listener and to take the other’s perspective
  • Allows you to pick yourself up and try again – and again and again

What research tells us about humility and great leaders

Jim Collins is a business leader and researcher who wanted to know what is was that accounted for the differences between good companies and great ones. His team came up with a list of criteria for identifying the good (the comparison companies) from the great (Level 5). When they looked at all the variables that accounted for Level 5 companies, it wasn’t what you might expect of the leaders – that they were extroverted, aggressive go-getters. Quite the contrary, they were:

  • Calm
  • Determined
  • Unwavering resolve
  • Humble
  • Self-understanding and awareness
  • Openness
  • Perspective-taking

Sound familiar? Like it or not, as parent, you are the leader of your child’s team. Teachers, therapists, doctors, and other family members all look to you for direction.

In summary, don’t worry if you don’t have it all figured out. No one does! We do the best we can under difficult circumstances because we love our kids and would move heaven and earth to help them.

Here are some reminders for those times when you’re feeling less than confident in parenting:

  • We don’t know what we don’t know (so much is new and unpredictable)
  • Surrender to that truth
  • Stay open to learning
  • Calm always trumps chaos
  • Be aware of own strengths and limits
  • Put ourselves in the shoes of others
  • Ask for help and help others

“Before I got married I had six theories about bringing up children; now I have six children and no theories.”

  • John Wilmot (2nd Earl of Rochester, 1647-1680)

Is parenting your child with autism a humbling experience? Share your story with us. We’d love to hear from you!

 

 

 

 

How to Navigate the Diagnosis and Treatment of Autism: Tips for Families from Culturally and Linguistically Diverse Backgrounds

multicultureObtaining a diagnosis and treatment for Autism Spectrum Disorder (ASD) can be an overwhelming process. Complications with long waitlists for initial diagnosis particularly in rural areas, confusing policies regarding insurance billing and navigating a multitude of appointments, and difficulties coordinating care between therapeutic and educational settings can create an isolating and confusing experience for many children and families. These issues often add additional stress to the daily ups and downs of caring for an individual with ASD.

The situation is only made more complex for families from culturally and linguistically diverse backgrounds for whom English is a second language. The ability to communicate information about your child, your family culture, and your concerns and hopes as a parent is valuable and important in ensuring you receive the support you need and your child receives the highest quality of care possible. Thankfully, many professionals, legislators and families are working together in efforts to improve the system of diagnosis and treatment. 

Below are several tips that linguistically diverse families may find helpful in navigating the process of diagnosis and treatment for autism:

1.Ask for an interpreter. It is your legal right to access care in your first language for free. You may request a provider that speaks your language. If one is unavailable the services of an interpreter can be provided to help you communicate with your child’s care team. All major hospitals provide these services. For assistance with making appointments at Seattle Children’s Hospital call: 1-866-583-1527. Mention your first language, your child’s name, the provider with whom you’d like to speak.

2.Confirm what your insurance will and will not cover. Visits with a psychologist, psychiatrist, mental health therapist or behavioral consultant are usually billed as mental health services. Some insurance companies cover mental health services the same as medical services, others do not. Important questions to ask your insurance company include:

  • How many mental health visits are allowed per year?
  • Can my child see any provider or do I have to choose from a list?
  • Are there any diagnoses that are not covered?

3.Share about your family and culture. Communicate your family’s beliefs and cultural understanding of what is happening for your child. Share what you believe are your child’s strengths and challenges. Remember, you know your child better than anyone else.

4.Ask for clarification. If you don’t understand what the provider is asking or if you have questions about what they are saying, it’s ok to have the doctor slow down and clarify or give examples.

5.Ask if there are materials and resources available in your first language. Many resources are available in Spanish and other languages and providers will be able to point you in the direction of books and other resources. The Autism Speaks website provides resources in several languages. Resources in Spanish can be found here.

6.Use parent education and support resources. Getting an autism diagnosis and navigating treatment is life-altering. You are not alone. Speaking with other families who may be facing the same challenges and gaining support for yourself is essential in better supporting your child. Ask your provider about connecting you with other families from your language/culture through groups and other supports.

  • More information about Parent-to-Parent support groups in Spanish.
  • The group Padres Unidos is a support group in Spanish for parents who have children with special needs. This group meets the third Friday of every month from 6-8pm at Child Strive 14 E Casino Road, Bldg. A Everett, WA 98208.

7.Request assistance with making scheduling more convenient if possible. Ask your provider if there are appointments available in the early mornings or evenings or if several visits with different providers can happen during one day to limit the need to take several days off of your own work schedule.

8.Prioritize Interventions. Request that your provider help you prioritize interventions and treatments that are the most important first, if your ability to attend multiple weekly appointments is limited.

9.Connect with school. Inquire if there are services that might be provided at your child’s school or in the home setting to limit the need to travel to clinic for services.

10.Encourage provider collaboration. Request that providers communicate directly with each other rather than you having to pass along the message. Encourage community-based providers to connect with your child’s school.

11.Be an active part of your child’s treatment. Ask questions, speak up, advocate. You’re the number one expert on your child. Your involvement and expertise is a key component to their care. They are lucky to have you and they will benefit from having you involved!

 

¿Cómo enfrentar el diagnóstico y tratamiento del Trastorno del Espectro Autista? Consejos para las familias de diversos orígenes culturales y linguisticos

Por: Megan Frye, PhD, Psicóloga Infantil

multiculture

La obtención de un diagnóstico y tratamiento para el trastorno del espectro autista (TEA) puede ser un proceso abrumador. Las complicaciones con largas listas de espera para el diagnostico inicial sobre todo en las zonas rurales, confundiendo las políticas con respecto a la facturación del seguro y la navegación por una multitud de citas, y dificultades para coordinar la atención entre los ajustes terapéuticos y educativos pueden crear una experiencia de aislamiento y confucion para muchos niños y familias. Estos problemas suelen anadir tensión adicional a las subidas y bajadas diarias de cuidar a una persona con TEA. La situación solo se hace mas compleja para las familias de diversos orígenes culturales y linguisticos para quienes el ingles es un segundo idioma. La capacidad de comunicar información sobre su hijo, su cultura familiar, y sus preocupaciones y esperanzas como padres es valiosa e importante para garantizar que reciba el apoyo que necesita su hijo y su que reciba la mas alta calidad de atención posible. Agradecidamente, muchos profesionales, legisladores y familias trabajan juntos en los esfuerzos para mejorar el sistema de diagnóstico y tratamiento.

A continuación se presentan algunos consejos que las familias de habla hispana pueden encontrar útiles en la navegación del proceso de diagnostico y tratamiento de TEA.

1.Solicite un intérprete. Es su derecho legal para acceder a la atención en su primer idioma de forma gratuita. Usted puede solicitar un proveedor de habla española. Si uno no está disponible los servicios de un intérprete se pueden proporcionar para ayudarle a comunicarse con el equipo de atención de su hijo en español. Todos los grandes hospitales ofrecen estos servicios. Para obtener ayuda con hacer citas en el Hospital de Niños de Seattle (Seattle Children’s Hospital): Llame Nuestra línea gratis de Interpretación Telefónica 1866-583-1527. Menciónele al interprete el nombre de la persona o departamento que necesita.

2.Confirmar lo que debe y no debe cubrir su seguro. Visitas con un psicólogo, psiquiatra, terapeuta de salud mental o consultor de comportamiento suelen ser facturados como servicios de salud mental. Algunas compañías de seguros cubren los servicios de salud mental lo mismo que los servicios médicos, otros no lo hacen. Las preguntas importantes para hacerle a su compañía de seguros incluyen:

  • ¿Cuántas visitas de salud mental se permiten por año?
  • ¿Puede mi hijo ver a cualquier proveedor o tengo que elegir de una lista?
  • ¿Hay algunos diagnósticos que no están cubiertos?

3.Compartir acerca de su familia y la cultura. Comunicar las creencias de su familia y la comprensión cultural de lo que está sucediendo a su hijo. Compartir lo que usted cree son las fortalezas y desafíos de su hijo. Recuerde, usted conoce a su hijo mejor que nadie.

4.Pida una aclaración. Si usted no entiende lo que el proveedor está pidiendo o si tiene preguntas acerca de lo que están diciendo, que está bien tener el médico reduzca la velocidad y aclarar o dar ejemplos.

5.Pregunte si hay materiales y recursos disponibles en su lengua materna. Muchos recursos están disponibles en español y los proveedores serán capaces de señalar en la dirección de los libros y otros recursos. Un recurso útil Sobre el autismo en Español es el sitio de web de ‘Autism Speaks.

6.Utilizar los recursos de educación y apoyo para padres. Conseguir un diagnóstico de autismo y la navegación por el tratamiento altera la vida. Usted no está solo. Hablando con otras familias que pueden estar enfrentando los mismos desafíos y la obtención de apoyo para usted es fundamental para apoyar mejor a su hijo. Pregunte a su proveedor acerca de que la conexión con otras familias de la lengua / cultura a través de grupos y otros soportes.

  • Puede encontrar más información sobre los grupos de apoyo de padre a padre en español accediendo.
  • El grupo de Padres Unidos es un grupo de apoyo en español para los padres que tienen niños con necesidades especiales. Este grupo se reúne el tercer viernes de cada mes de 6-8 pm en Child Strive 14 E Casino Road, Bldg. A Everett, WA 98208.

7.Solicita ayuda con la fabricación de programación más conveniente si es posible. Pregunte a su proveedor si hay citas disponibles por la mañana temprano o por la noche o si varias visitas con diferentes proveedores pueden suceder durante un día para limitar la necesidad de llevar varios días fuera de su propio horario de trabajo.

8.Prioriza Las intervenciones. Solicita que su profesional medico le ayudara a priorizar las intervenciones y tratamientos que podría ser la primera más importante si su capacidad de asistir a varias citas semanales es limitada.

9.Conectar con la escuela. Preguntar si hay servicios que pueden ser proporcionados en la escuela de su hijo o en el hogar para limitar las necesidades de viajar a la clínica para recibir servicios.

10.Fomentar la colaboración proveedor. Solicita que los proveedores se comunican directamente entre ellos en lugar de tener que usted transmita el mensaje.  Formenta a los proveedores basados en la comunidad para conectar con la escuela de su hijo también.

11.Sea una parte activa del tratamiento de su hijo. Hacer preguntas, hablar, defender. Usted es el número uno experto en su hijo. Su implicación y la experiencia es un componente clave para su cuidado. Son muy afortunado de tenerte y que se beneficiarán de tener que participar!

 

Autism and Coping Tools for Parents Part 4: Reframing

Katrina and I first met Susan and her family in a parent support group here at Seattle Children’s Autism Center. Since then, we’ve observed her skillfully demonstrate a number of coping tools when challenges arose. Today we share how reframing has helped with adversity in her life.

 

 

Q: How do you define this parenting tool?

A: For me, Reframing is a parenting technique that means intentionally choosing my frame of reference.  It is important for me to view my parenting experience in relation to the person my son is rather than the person I thought he might be.  Before my son was born, I had ideas about what I would teach my child and what we would do together.  Those ideas assumed that my child would be typically-developing.  That turned out to be the wrong frame of reference.  I needed to think about hopes, goals, expectations, and celebrations that used my son, as an individual, as the reference. I would call this a child-centered framework.

Q: How did you discover this tool for parenting kids with ASD?

A: My brother and his wife have been my role models for using a child-centered framework for parenting. They have two typically-developing children, and they always honored their children’s unique personalities and looked at parenting as an opportunity to get to know their children and nurture and guide them.  They did not try to mold their children into some preconceived notion of success.

Q: How has this tool lessened your stress or made life a bit easier for you?

A: By reframing my parenting with a child-centered framework, I can celebrate my son’s strengths, which include a great sense of humor and a relentlessly positive outlook. I can also help him with his challenges, including repetitive scripting and slow academic progress.  Looking at our journey through the lens of my son’s unique personality and combination of strengths and challenges, I can see that he has steadily grown and developed.  Rather than seeing my parenting as continually failing to achieve the milestones of typically-developing children, I can see my parenting as supporting my son’s individual progress.

This does not change the fact that I sometimes long for the milestones celebrated by parents of typically-developing children. The community standards for the academic, social, and behavioral progress of typically-developing children do not apply to my child.  I go through cycles of that being sad and disorienting.

Q: Did you find that the more you used this tool, the better you got at it?

A: I suppose reframing has brought me to an important realization.  It has led me to think long and hard about what it means to have a “good” or “successful” life.  The things that have made me feel that my life is good or successful have been friends and family, good health, meaningful work, supporting my community, and enjoyable hobbies.  By that measure, my son’s life is good and successful.  Supporting and empowering him to continue to have a good and successful life is the focus of my parenting.

Q: What else would you like us to know about this parenting tool?

A: Reframing does not mean denial.  As I said, the fact that the typically-developing framework does not apply is still sad and disorienting sometimes. Reframing, for me, simply means viewing my parenting through the lens of the person my son is and with a focus on doing my best to make sure he has a good and successful life.

We’d like to thank Susan for sharing her coping tool with us and invite you to do the same. When we help others, we help ourselves.