(Me and my girl wishing you an abundance of JOY and PURPOSE in 2019 and beyond!)
I have been a long-time fan of a fresh start (and any opportunity to start anew, really). It could be moving into a new home, a different school experience for my child and even opening the pages of a crisp, blank journal. Certainly, a NEW YEAR warrants one of the best excuses to clean the slate and start over, and I am fully embracing this as we usher in 2019.
As a child, I spent hours visioning my future life. I drew pictures of two story houses with in-ground pools in the backyard. There were lots of kids and dogs everywhere. I decorated my posh outfits: puffy sleeved dresses with polka dots and bows. Sometimes I drew a Cadillac in the driveway (hey, a girl can dream, right?!).
But it wasn’t until well into my adult life that I had the concrete realization that material and external things were not what I was really looking for. I wanted to FEEL a certain way, no matter how that presented from the outside in. Big house, fancy things, multiple kids: it wouldn’t really matter if I did not have a greater sense of purpose in this universe.
2018 was a tough one for me and my family with unexpected twists and turns (and more to come). But right now, I am spending a cozy New Year’s Eve at home with Arizona (she’s playing with her home-made slime, pretending she has her own YouTube channel), we are healthy, we are loved and we know that JOY will always come in the morning. I am grateful!
To that end, here is what I am looking forward to in 2019 (and beyond):
*Feeling (and staying) connected to a greater purpose
*Making a difference in other people’s lives (namely, my beloved special needs community)
*Saying NO to the things that do not serve me
*Experiencing (and maintaining) a thriving relationship with my daughter (an on-going hope!)
*Finding JOY, in little things, every day
*Being conscious of a healthy lifestyle: spiritual, physical, emotional and psychological
*Experiencing meaningful and enriching relationships with family & friends
*Exploring ways to participate in new experiences and adventures
*Finishing my MEMOIR (so that I can finally share my story with you all!)
*Allowing my God to continue leading, guiding and directing me as His vessel on this earth!
What are you looking forward to in 2019? Do you have specific goals? Items to cross off your check list? Ways to expand beyond your comfort zones? Please share: I am always rooting for you.
Happy New Year, my loves!
(The Westin Ka’anapali Ocean Resort & Villas, December 2018)
My family and I were excited to check in to the Westin Ka’anapali Ocean Resort & Villas this 2018 winter holiday season. We heard amazing feedback and read great reviews about the property and looked forward to our stay.
Mind you, our daughter, who has serious food allergies is now 12. Since the age of 2 months old, we have traveled with her to Central America, multiple islands in the Caribbean, Asia, Canada and all over the United States. We have never had a food allergy incident until our recent stay in Maui, at your specific property – at your restaurant (Pulehu) who assured us our daughter’s meal was entirely allergen free. To note: our child is allergic to all dairy, eggs, gluten and nuts (all nuts). Also to note: this is a very short list compared to what her initial allergens were, earlier in life (pages of food items to avoid). For this, we are grateful!
That being said, we have always been extremely calculated with our travel plans. Once, we cancelled a trip to Costa Rica because the nearest hospital was only available via helicopter.
We have shipped our daughter’s special food items to remote areas, have booked air bnb’s specifically because they were close to grocery stores that carry food items (and particular brands), that our daughter can eat (all of which I have planned ahead for, called in advance, made sure items were in stock DAY OF TRAVEL, etc). We never leave the house without doctor’s notes, often fly with frozen foods in special ice pack carries and arm ourselves with Benadryl, baby wipes, Claritin and epi-pens. An amazing invention “table toppers” – sticky, disposable placemats that we stuck to every surface eating area foreign to our home, became our best friends. It wasn’t just an accidental ingestion of food that was our concern; it was cross contamination. Yes, she is that sensitive. Most people with food allergies are.
So when we booked our hotel stay at the Westin in Lahaina, we mostly planned to cook food in our villa that was armed with a kitchenette. We also knew that sashimi and white rice would be plentiful on the island, and planned to eat out once or twice at a sushi restaurant. (Arizona loves her Japanese food)! But one evening, as we were coming back from a sunset sail and looking for an eating experience outside of our hotel room and taking a break from sushi, I thought: “Hmm, there’s an Italian restaurant on property. I wonder if they serve gluten free + vegan + nut free pasta?” Our daughter isn’t very picky. She’ll eat that pasta with plain olive oil and a little bit of salt. Add a side of steamed or sauteed veggies? A perfect meal for her.
I called Palehu, the Italian restaurant. I asked if they had gluten free + vegan + nut free pasta. They assured us, yes, they did. I made a reservation.
Our server was super knowledgeable, and understood our specific needs right away. Sometimes I feel like a nuisance, asking a million questions about ingredients and specifics and having folks double and triple check with chef and sous chefs in the kitchen. We were assured, over and over, that they were familiar (and very experienced) with accommodating our daughter’s specific food allergies. We trusted them.
And then our child was given her first course – gluten free + vegan + nut free flat bread. There was a piece of parsley on top, something we weren’t expecting, but our child isn’t allergic to parsley, so we just removed it and she started eating. “OH no, Mama,” she said a few minutes later. “My lip is tingling.”
I looked over and saw a slight swell. This wasn’t hugely uncommon, so I reached into my purse and gave her a dosage of chewable children’s Benadryl. We monitored her for another 10-15 minutes, at which point the swelling remained stable. “I’m feeling better, Mama,” she said. And, she looked (and seemed) fine.
Her main dish of gluten free + vegan + nut free pasta (spaghetti) mixed with plain olive oil was served next. She also had a side of sautéed broccolini (made with olive oil only, they assured us). I noticed some pieces of garlic in the broccolini, but because she’s not allergic to that, felt okay having her eat it.
To spare many details later and to make a long story short, our daughter had a critical allergic response to something that night, and specifically from the meal she consumed at Palehu. We ended up calling 911 and were visited by both the Maui fire department and EMT responders. Thankfully, multiple Benadryl dosages and a night of discomfort (full body swelling and insanely itchy rashes) were all our daughter had to endure. Her throat did not swell shut; she did not go into anaphylactic shock. She was FINE and we are so GRATEFUL.
AND, as I wanted to share the information with the hotel staff the next day, I was directed to the food & beverage manager and other management. I expressed my concerns around the restaurant protocol and the way they responded to specific food requests.
Unfortunately, the hotel seemed more concerned with their lack of fault / liability than the humane issue of our child experiencing the allergy attack and related trauma. (As a side note, and this can be another article altogether, our daughter’s autism comes with a huge side dish of anxiety. Her first response to her allergic reaction is that she would never trust a hotel restaurant again; and certainly not an Italian one). She will perseverate on this and will carry it with her, for years to come. I know this, and I will also help her process through it. Our goal is for her to experience NEW things, not run away from experiences.
I let the hotel management know that it was not my intention to sue anybody; what good would that do?? I have a huge passion for educating and sharing information from my lived experience as an ALLERGY MAMA, to those who can affect change in my community / population. I shared these tidbits with the Westin staff and hope you, too, can take this message seriously.
A few thoughts about CROSS CONTAMINATION in foods:
- Cooking utensils including skillets / pots / toasters, cannot be privy to items with allergens unless thoroughly scoured / cleaned out, etc. Even when we travel to places with kitchens, I often travel with my own cookware. When we don’t, I put items through the dishwasher before using. Even then, I am extremely cautious.
- What about the garlic that was in the broccolini? Where was it chopped? On the same cutting board as someone cutting a dairy item?
- Did someone grab the flat bread to deliver to our table after they had wiped their hands on their apron that had raw egg on it from a previous recipe?
- Just because you are serving someone food items that don’t have the ingredients someone is allergic to, doesn’t mean they won’t have a reaction. This could be from the item being prepared in the vicinity of something. Maybe a chef / cook didn’t wash their hands after handling another food item?
- I took some bread home from a restaurant once; it was supposedly vegan + gluten free. I later learned that it had an egg wash brushed over the top; totally fine for me, but what if I had put that in the gluten free toaster designated for my daughter? She would have had a reaction to it, for sure.
I am interested in continued travel and experiences with my child. I am grateful for all of the adventures we’ve had, thus far! My wish is that allergy awareness protocol can be a little more defined; and that corporations and hotel chains can be open to more feedback, from the source (allergy families). I look forward to continually sharing my learnings with anyone who will listen. We might have to be a little more creative sometimes, but we still get to LIVE amazing lives. And my wish is that we all can!
(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.
(A successful outing!)
What are your tips for helping your child try something new? I would love for you to share!
(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.
(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?