(This girl loves a GOOD SWING)
I love the awareness that the month of April brings to my lovely existence in AUTISM-LAND! It is certainly my BIG PURPOSE on this earth; an on-going quest to educate others (and myself), advocate for more resources / support / understanding, share resources / ideas / stories / experiences, speak up for those who can’t speak for themselves: in all things Autism, and specifically in all things surrounding my daughter’s experience with Autism. I wouldn’t change her for the world, but I will change the world for her. This is my mission.
Last night, I asked Arizona what she felt about World Autism Awareness Day (April 2, annually). She said, “I feel like Autism is like a puzzle piece; it’s like an extension to my brain so I have a bigger brain than others. But just because I have Autism doesn’t mean I’m a mean person. I’m very nice. Occasionally, I can get mad and evil but I am extremely skilled at so much, for example I am one of the best artists at school, apart from Rachel, who’s Asian. And I’m Asian too, right mama?”
I love the way my child’s brain works. I will never take for granted her ability to verbally express herself (not always the case). Through the ups and downs, there is one thing that remains constant: I am grateful for the thriving relationship I have with my daughter.
To that end, my wish this year extends way beyond “just” awareness for this diagnosis of neuro-diversity that NOW currently affects 1 in 59 children. How about:
Can we just have this?
Looking forward to sharing a lot of gems (groups, ideas, events, books) this month and beyond. May our lives continue to be enhanced by the beauty of AUTISM.
What topics would you like to know more about? What would be helpful to share with your children / communities? What questions do you have for me as a parent of a child with special needs? What questions do you have for my 12 year old daughter with ASD?
(Our make-shift obstacle course on the way to school!)
In life in general but especially in the autism world, self-regulation is an important practice for adjusting and controlling emotions, behaviors and attention as it relates to change, transition, sensory overload and new and / or unexpected situations.
I have learned so much by watching my daughter find ways to cope through the various ups and downs of life; and I am overwhelmed with gratitude for the therapists and professionals along the way who have helped shape (and encourage) these various practices for her.
One of the biggest ways that Arizona self-regulates is through physical movement. When she was younger, she would constantly be in motion. She would also find every possible higher surface to climb up and jump off of. I was initially alarmed when my child would climb on the dining room table and jump off, repeating this pattern over and over. My first thought was, “Ouch, that can’t be good for her knees,” and my next thought (which was also something I expressed out loud, and not kindly) was, “You’re not supposed to be jumping off of furniture. Stop it!” But when I understood that she was seeking proprioceptive input, I began to understand that her unique physical behavior was actually a very important regulatory activity for assisting in controlling her responses to overwhelming sensory stimuli around her. Okay, that was a very big sentence for me to basically say that she was regulating herself so that she could then be able to take in and be available to the world around her.
At 12 years old, Arizona doesn’t jump off of furniture anymore, but she does skip, hop, run and jump everywhere outside and given every opportunity to do so. We walk to school daily, and she has created an obstacle course for herself during that 10 minute jaunt. She is on and off walls, skipping down hills, bouncing through the neighborhood. She is releasing energy and getting her body ready to sit in a classroom for the next 5-6 hours. Note: the heavy winter rains we’ve had in Southern California have been absolutely torturous for her!
My coaching for other parents with children like mine are to take a minute when observing your child’s behavior, especially when it doesn’t seem to make any sense to you. If it’s not causing anyone harm, try to look deeper into what your child is doing. How is this helping them? What is the positive feedback they are getting from this behavior? Is there purpose behind it?
I have learned to find a balance in both teaching my child what’s appropriate and safe and to not sweat the small stuff.
What have been the ways in which your children self-regulate? How do you guide or advocate for them in these moments?
(Walking to public school!)
In light of the recent public school teacher strike here in Los Angeles, I felt a renewed sense of gratitude for the resources and support Arizona has received as a student with disabilities.
Years ago, as I was trying to navigate and understand how best my child’s educational needs would be met, I was privileged to have a conversation with a highly renowned and respected educator. She encouraged me to consider public school as more resource support and services would be available for my child.
And, aside from having to advocate for and fight for specific support services on occasion, Arizona has largely received every thing she has needed, in the public school system.
I am grateful for the Individuals with Disabilities Education Act (IDEA) which states that each child who has a disability and needs special education and related services will receive a free and appropriate public education (FAPE).
I find the following breakdown from www.understood.org to be the most articulate:
Your child with special needs has RIGHTS! We sometimes need to fight for them, but they are available. Know them and exercise them.
(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!