Autism Speaks: Into the Blue Gala, 2018

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(Moms’ night out: grateful for my GIRLFRIENDS!)

It was an honor to attend the annual INTO THE BLUE gala last night at the historic Beverly Hills Hotel. It was a beautiful and heart centered evening showcasing and celebrating the mission of Autism Speaks.

The reality is this: ONE in 59 children are diagnosed with autism … every 6 minutes. And because my daughter is that chosen “one”, I am dedicated to continuing my advocacy for both her rights and those of families like mine.

My dear friend, Georgianna Junco-Kelman (an amazing attorney advocate for special needs families and mama to three boys, one of whom has special needs) was event co-chair and did a phenomenal job of putting together both an inspirational and entertaining evening; all in the name of raising awareness for autism.

I reflected on my early days after Arizona’s initial diagnosis, nearly 10 years ago. I was confused, scared and completely overwhelmed. I immediately mourned the loss of having a “normal” child. Some days, I was embarrassed and felt like it was my fault my child had special needs. I took the news hard, and couldn’t imagine finding hope and happiness again. But somehow, that’s exactly what happened for me: I found a way to heal the deep wound of thinking something was wrong with my child and discover (and get excited about) the unlimited possibilities available both for her and me.

Last night I was so touched to be surrounded by my mommy / girlfriend community, all of whom are a constant source of support and inspiration to me. They love me and they love my Arizona. We dressed up in BLUE, to honor the cause. We laughed and felt deep emotion throughout the touching program. At one point during the evening, I had the distinct realization that I have never been prouder about something in my life: my role as an “Autism Mama.”

Autism Speaks: thank you for shining so much light on families like mine. I feel supported and I am grateful.

***Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the life span, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of people with autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions. Autism Speaks enhances lives today and is accelerating a spectrum of solutions for tomorrow.

Spotlight: Enjoy Life Foods

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(Gluten free, vegan, nut free brownies? Yes, please!)

My journey with food allergies began as soon as Arizona was born. I remembered thinking that a lot of children had allergies but also that a lot of children grew out of them. I was convinced this would also be the case with my daughter.

12 years later, however, Arizona’s food allergies are still prevalent and require specific attention. Thankfully, I can make my way around the kitchen in creative ways and live in a city (Los Angeles) where food challenges (allergies, intolerances and aversions) are easily accommodated for.

What has been more difficult is the impact on my daughter’s social needs. Having a child with autism and sensory issues already presents its own set of social challenges; but adding food allergies to the mix can isolate us even more.

This is why I am so grateful for mindful companies such as Enjoy Life Foods, who strive to make lives like mine a little easier. Because of them, more inclusive social experiences have been created for my child. She can enjoy treats like her friends: at birthday parties, on play dates or during holiday celebrations. And, I don’t have to worry, because all of Enjoy Life products are free from gluten, wheat, peanuts, tree nuts, dairy, casein, soy, egg, sesame, sulfites, lupin, mustard, shellfish, fish and crustaceans. My child is safe and can fit in with her group of peers.

And: in addition to pre-made food products and treats, there are myriad mixes (muffins, brownies, pancakes, cakes) that allow for my child to practice independent life skills in the kitchen.

“Can I lick the spoon, mama?” she asks after mixing all of the ingredients together. “You sure can,” I answer, excited that these small moments of joy, perhaps taken for granted by so many other kids, are now available to my child.

Thank you, Enjoy Life Foods, for contributing to this thriving life my child is leading. You have a customer for life in us xoxo.

Top Tips: New Adventures

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(My train loving girl)

Arizona has a high level of interest in transportation of all kinds. She spends countless hours reading about and watching videos of trains, especially. In Los Angeles, she’s excited to ride on the Metro whenever she can.

Every time she takes a ride though, she chooses the same exact route to get to the same exact destination (Expo line to the California Science Center). And although this is a fun activity, it’s also important for children on the spectrum to get “unstuck” on the same routine.

A few weeks ago, I came up with a plan to try something new with Arizona. I chose an adventure around riding the Metro, since it’s something she likes and is comfortable with. But then I talked about my wish to take the train WEST this time, to downtown Santa Monica. I also talked about walking to the nearest station to / from our home instead of driving to the other one she was comfortable departing from. Needless to say, she was NOT happy about trying something new. Fortunately, I am used to this (!!). So I let her process it through and practiced some of my “GO TO” tips along the way:

  • Listen to the Worry: Sometimes it’s just a matter of letting your child express themselves (note: this can be verbally, physically, scribbling, drawing, or making art). Let them feel their feelings and most importantly, express them / get them out.
  • Create a Schedule: Talk / write or draw about a schedule for what the new adventure will look like. Arizona loves when we work on visual schedules together. In this particular case, we also went online to pull up the map of our route. We engaged in conversation about the different stations and looked at the timing of our route as well.
  • Be Flexible: Even when we want our children to try something new, we find ourselves getting rigid about the way it needs to happen. Isn’t it amazing how much we can learn from our children: to be flexible and learn to go with the flow, as needed? Listen to your child’s needs and make changes, accordingly.
  • Getting on Board: Allow the time and space for your child to get through their worries, understand the new plan, participate in the planning and come up with the decision from the inside out. In this particular case (and after all of these steps), Arizona finally said to me, “Okay Mommy, I’ll try it but JUST this once.”

And guess what? We had such a fun adventure! Arizona had a great time and is already talking about our next Metro ride somewhere new. I was able to be present in the moment of spending quality time with my daughter. I am so grateful for these moments.

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(A successful outing!)

What are your tips for helping your child try something new? I would love for you to share!

HollyRod Foundation: 20th Anniversary

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(A fun night out supporting a beautiful cause)

I was honored to join the HollyRod Foundation for their 20th anniversary DesignCare gala last weekend.  It was an unforgettable evening of fashion, music and philanthropy and all proceeds went toward funding awareness, research and programs in support of both Parkinson’s Disease and Autism.

Holly Robinson Peete has been a long time mentor to me as I have navigated my role as a parent in the beautiful but complex world of Autism. Although her journey has been challenging at times, I have always admired her ability to keep pushing the envelope for her son, both as an advocate for him and for so many others on the spectrum.

A few highlights of the evening included a fashion show by Christian Siriano, a lifetime achievement award to Magic Johnson, inspirational speeches by both Rev. Jesse Jackson and Smokey Robinson, and champions in the world of autism including Steven Wiltshire, Microsoft and Lisa Ackerman. The Muhammad Ali inspiration award went to Matt Robinson, Holly’s brother. The night was capped with a vibrant performance by Morris Day & The Time.

I am grateful for this community that continues to inspire, educate, uplift and give me so much hope, over and over again!

To donate to HollyRod, visit: http://www.hollyrod.org.

July 4th: A Sensory Guide

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(Flashback to July 4, 2013)

Perhaps the most exciting celebration of the summer, July 4th is a perfect time for families and friends to get together, engage in fun activities and most likely top of the night with spectacular fireworks.

For families with children who have acute sensory issues like mine, celebrating Independence day can be stressful. There are crowds, loud noises and bright, flashing lights booming throughout the sky. What might be fun to everyone else, can be excruciating for a sensory child.

Here are my top 5 tips for creating a safe and joyful environment on this big day.

1. TALK ABOUT IT: What is Independence Day? Why do we celebrate it? Engage your child in the meaning of the holiday. What are ways different people celebrate? Look at YouTube videos and websites ahead of time (adjust the volume for fireworks but talk about the big, unexpected noises they create). Go to the library or amazon and pick out books with your child. Let them be part of the process.

2. MAKE A PLAN: I am a huge fan of visual schedules for pretty much everything. It helps to engage your child in the creation of that schedule, so that they can feel ownership in upcoming plans. Review the schedule daily and talk about ways to be flexible throughout the day.

3. HAVE A TOOLBOX OF RESOURCES: This can be a bag of activities, noise cancelling headphones, snacks or even a favorite stuffed animal. Be prepared to soothe your child during any activities that could be overwhelming.

4. BE PREPARED FOR PLAN B: Have other activities ready to go if you need to make a change but especially understand (and embrace) that sometimes plan B is an escape route / exit strategy altogether. So, my fellow amazing parents, THIS is our opportunity to BE FLEXIBLE. We try to instill this strategy into our children’s lives all the time, so now it’s our turn to be prepared to go with the flow. Note: If you have other children to take care of, go with other parents who can be responsible for them while you exit left with your child who needs to leave (and sometimes, promptly).

5. HAVE FUN: Above all, find ways to enjoy your day as much as possible. When things aren’t going your way, let it go. Breathe. If your child is showing signs of distress, step into the moment with them. Let them know that everything will be okay and that you are there to support them. Note: the majority of our 4th of July celebrations have ended with us watching the east coast feed on television, on extra low volume. Snacks for Arizona and a glass of wine for me. (Heaven, truly).

Cheers to a safe and sensory friendly holiday for you and your family! What are your GO TO strategies for making the holiday enjoyable?

Travel Tips

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(Taking Off!)

Arizona has been all over the world by plane, trains, boats and automobiles since she was 2 months old. It was important for me and her dad to introduce her to travel at an early age, as it was both a passion of ours.

But as we discovered Arizona’s food allergies, sensory dysfunction and attention + anxiety issues, we realized traveling would be challenging. Nevertheless, we kept going, even as she screamed throughout entire flights, ran away from us in too many airports to count, broke out into hives from food allergy contamination and loudly declared inappropriate and offensive commentary to those around her. Oh, and she is deathly afraid of public restrooms: automatic toilets & hand dryers in airport bathrooms can dysregulate her for days. Airplane bathrooms are worse; Arizona is so anxious about anticipating the sound of the flusher that she has convinced herself that she won’t be able to use plane bathrooms at all. I still take her, sometimes kicking and screaming, explaining to her the importance of bladder health. This requires me cramming into that claustrophobic bathroom with her and physically holding her down while she protests. We do breathing exercises and I give her calming techniques throughout. Eventually she goes and immediately plugs her ears tightly while I press the flush button for her. It was difficult when she was younger / littler but now as an almost pre-teen, it’s becoming almost impossible to assist her in such a small space.

But as I write this, we are 35,000 feet in the air on our way to Taiwan (only 13 more hours to go). Arizona is contentedly watching “The Secret Life of Pets” and laughing at the screen. YES, we have come a long way and and YES, so much preparation still needs to happen before every single trip we take.

Let me share a few of my important To Do’s before we travel:

  • Visualize it: as with anything new on our schedule, Arizona and I create a visual schedule together to talk about what’s upcoming. In addition to drawing out a visual schedule of our travel plans to Taiwan, I also took her on a tour of the airline website so she could understand what type of plane we were traveling on, where are seats were and what the interior of the plane looked like (most websites have this info).

 

  • Bring a doctor’s note: Due to issues with food contamination and available options to fit Arizona’s dietary needs, I always have to travel with food (both for on the plane and packed away for our destination). It is extremely helpful to have a doctor’s note explaining this necessity, especially when traveling internationally.

 

  • Long Distance Travel / Bag of Treats: This is a fun one, because it keeps Arizona looking forward to something new that occupies her on a long flight. I pick up a few items at the dollar section in Target and wrap each one in tissue paper. On the flight, Arizona can open up one new treat per hour (usually an activity book or something “to do”) and that keeps her focused. At least for a little bit!

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(Thank you, Target!)

It’s impossible to guarantee a perfectly smooth travel experience, but planning ahead definitely helps. And since we’re not going to stop exploring the world anytime soon, we continue to figure out new ways to make travel as joyful and stress- free as possible. I would love to hear any hints and tips you have as well!

RCAP Presents: Motherhood, Wellness & Spirituality

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(Motherhood Conversations)

Calling all Mothers!

For those of you in the Southern California area (or those of you who would like to come visit us for the weekend), please join me and Dr. Mimi Nartey as we co-host a day retreat for Mothers:

As Mother’s Day approaches, we are all in need of a day to decompress. We need a safe space to talk to other mothers about social dynamics and parenting. We crave practical health & wellness strategies to sustain us. We could benefit from a conversation about the role of spirituality in our mothering journey, since we are often the SPIRITUAL hubs of our home. We are in desperate need of changing our motherhood story from one of “just surviving” to that of THRIVING.

On that note, please see schedule and registration info below for RCAP’s quarterly panel presentation on SATURDAY, May 19th in Cheviot Hills (address provided upon registration). We will be discussing the timely topic of “Motherhood, Wellness, and Spirituality.” This is going to be an amazing full day event. You may opt to attend the afternoon panel on Motherhood and Spirituality (complimentary for RCAP members), or elect to register for the full day, including a movement workshop, Motherhood and Wellness panel, and guest lecture by best-selling author, inspirational speaker and much sought after spiritual counselor, Suzi Lula (The Motherhood Evolution: How Thriving Mothers Raise Thriving Children). We will have a variety of speakers throughout the day from different wellness practices and faith backgrounds. Please join us for a day of inspiration and transformational conversation!

Schedule

  • 8:30am – 9am: Registration & Light Breakfast
  • 9:15am: Welcome & Movement Exercise
  • 9:30am-12noon: Motherhood and Wellness Panel
  • 12noon: Lunch (provided, please choose box lunch selection with registration)
  • 12:45pm: Guest Speaker Suzi Lula “Self-Care as a Spiritual Practice”
  • 1:30pm-4:00pm: Motherhood and Spirituality Panel
  • 4:00 – 5:00pm: Mingling!

Registration & Pricing

General Attendance

  • Full Day (includes light breakfast, boxed lunch and beverages): $79

RCAP Members

  • Full Day (includes light breakfast, boxed lunch and beverages): $59
  • Afternoon Only (Motherhood & Spirituality Panel starting at 1:30pm: Complimentary)

Please RSVP! Space is Limited.

 

7 Top Tips for Self-Care ….

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(My new handbook is available now!)

My journey with self-care started years and years ago, long before I became a mother. I grew to understand that taking care of myself is NOT selfish and that by doing so, I would be more available to my loved ones in deeper, more meaningful ways. It’s so much more satisfying to spend time with and take care of others when my own tank is full.

Today, my definition and practice of self-care has shifted now that I am a parent to a child with special needs. I find myself wanting to live more intentionally, consciously and ON purpose.

To that end, I whipped up a little handbook on my 7 Top Tips for Self-Care as a Special Needs Parent. I’m so happy to share them because I know how important they have been for me in my daily life.

For more in depth practice and specific steps in diving deeper into these 7 areas, you can purchase my handbook for $5 here (to cover printing + shipping). Please make sure you leave your full name / address when purchasing.

Enjoy!

 

 

 

Autism Awareness: Sesame Place

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(Sesame Place opening April 28, 2018 @ 10am!)

Amazing news for families like mine! The International Board of Credentialing and Continuing Education Standards has designated Sesame Place (located in Langhorne, PA) as the first theme park in the (entire) world to be a Certified Autism Center.

Opening its doors on April 28 at 10am, guests will be greeted by team members and staff that have received training in the areas of: sensory awareness, motor skills, social skills, communication, environment, emotional awareness, autism 101 and more. Certainly, this training will be beneficial to the need of ALL children, and especially those with special needs.

In addition to specialized training, sensory guides are available to help families plan activities based on their child’s needs. The park also has low-sensory areas, quiet rooms and provides noise cancelling headphones upon request. They also allow accommodations for guests who need to experience “low sensory parade viewing.”

The mission of the park is simple: to provide all families an enjoyable and memorable visit to Sesame Place by offering specialized services to guests with autism and other special needs.

Bravo, Sesame Place! We’ll find our way to the east coast for a visit, soon.

 

Autism Awareness: The Unity Bracelet

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(This year’s unity bracelet for autism awareness)

For the 6th year, Stella & Dot has created a Unity bracelet especially for the HollyRod Foundation. During the month of April, Stella & Dot will donate all net proceeds from eligible customer purchases of the Unity Bracelet to the HollyRod Foundation.

Sales from these bracelets will support the RJ’s Place program which provides technology, vocational training and job placement services to children and teens on the Autism spectrum.

I just purchased 5 bracelets (for myself & family members) from my amazing friend, Stella & Dot stylist Cydney Junius. You can purchase yours here.

The HollyRod Foundation is dedicated to providing compassionate care to those living with autism and their families. For more info, visit www.hollyrod.org.

Join me in raising awareness and acceptance around families living with autism.