World Autism Awareness Month: April 2019

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(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:

 

ACCEPTANCE

UNDERSTANDING

EMPOWERMENT

SUPPORT

VALUE

LOVE

INCLUSION

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?

Self-Regulation & Movement

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(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?

FAPE: Free And Appropriate Public Education

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(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:

ataglancefreeandappropriatepubliceducation

Your child with special needs has RIGHTS! We sometimes need to fight for them, but they are available. Know them and exercise them.

2019: A New Beginning

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(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!

An Open Letter to Marriott: FOOD ALLERGY AWARENESS

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(The Westin Ka’anapali Ocean Resort & Villas, December 2018)

Dear Marriott,

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.

EXHALE.

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!

Giving Back: A Cheerful Helpers Event

 

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(Cheerful Helpers Alumni Association Presents: A Read-a-Long / Sing-A-Long!)

I know I talk about Cheerful Helpers Child & Family Study Center, A LOT. Perhaps it’s because we are still super involved with the school even though Arizona graduated 4 years ago. Maybe it’s because I still feel so supported by the community, and that the tools and gifts we received from our time enrolled at the school have been life changing. Either way, I am honored to participate in anything related to Cheerful Helpers, because we recognize how much we received from them. I am grateful that Arizona and I can give back, in many ways.

This past Sunday, CHAA (Cheerful Helpers Alumni Association) put together an event for both current and alumni families to participate in. It was a festive afternoon / evening of interactive storytelling, singing and sugar cookie (gluten free + vegan!) decorating.

Arizona and I read a story to the group, engaging everyone with props and more. I know it’s sometimes hard for my daughter to come back to her “old school” and revisit feelings of the past, but this year she felt proud to be back in her old classroom, helping other kids feel safe and comfortable expressing themselves.

As we drove away from the event, I asked Arizona if she enjoyed herself. “Yes, mama. I know what it’s like to be a kid at Cheerful Helpers and someday, they will be reading and singing to others.”

I am grateful for my daughter’s awareness in recognizing the tremendous help she received while she was a student at Cheerful Helpers and her acknowledgment that she can continue in the legacy of helping others like herself.

We learn and then we share. We teach, while we are still learning!

Thank you (for the millionth time), Cheerful Helpers, for healing each child by treating / supporting the entire family.

*Note: if you are searching for a preschool / Pre-K / kinder program in the Los Angeles area that will focus on social + emotional learning for your child (who happens to have special abilities), please contact me with questions and / or reach out directly to Cheerful Helpers with any inquiries: http://www.cheerfulhelpers.org.

Launching in 2019: An Online Course for Special Needs Families

 

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(Coming soon: 2019!)

I am so ecstatic to announce the upcoming launch of my first online course: Life Management for Special Needs Families. This course will take families like mine on a 4-week journey in finding joy and balance in their lives. Even in our life’s work of advocating for and supporting our children to lead fuller and richer lives, it is possible for us as parents to experience this same richness for ourselves. It is one thing to find the best help for our children; but to recognize that we, too, are worthy recipients is an opportunity we cannot miss out on!

Life Management for Special Needs Families will cover the following topics:

Class # 1: Redefine Your Plan for Meeting Your Child’s Special Needs

Class # 2: Be the Best Advocate You Can Be for You and Your Child

Class # 3: Build and Manage Your Dream Team

Class # 4: My Top 7 Tips for Self-Care as a Special Needs Parent

Launch date: February / March 2019. Stay tuned for updates and registration info. I cannot wait to share my life’s passion with you all!

In the meantime, as I am adding on to my course materials, please let me know if there are any specific questions or topics you’d like to have me cover or expand upon. I’m all ears!

Looking forward to being of continued service to my beloved special needs families.

Cheerful Helpers Child & Family Study Center: An Alumni Tribute

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(A visit to Cheerful Helpers Child & Study Center post-graduation)

Every November, a group of alumni parents (and some older adult students who graduated years ago) come together for an “Alumni Night” with the current student families and staff. Alumni families have an opportunity to speak about their experiences at Cheerful Helpers and beyond; giving insight to current families about the good, bad and the hugely inspirational milestones ahead. This year, I talked about 12 year old Arizona, an anime loving girl who taught herself how to speak Japanese from watching YouTube videos. I described my daughter as a sweet and creative girl with lots of friends and even though she has very big and sensitive feelings sometimes, she truly does wake up every morning in the happiest of moods.

Our years at Cheerful Helpers Child & Study Center were life-changing, not just for Arizona but for our entire family as a whole. I remember that first day of school, vividly. We had left a coveted west side private school right before Spring Break, after months of going back and forth about it being the right fit for our child. Turns out it wasn’t, and my quest for a new environment began. I am so grateful that we were able to find Cheerful Helpers and spend 2.5 amazing years there.

Here’s a little snapshot from our first day of school…. enjoy!

April 2012

“Mommy, I want to dress fancy for my new school,” Arizona said, the morning of that first day. Our journey at Cheerful Helpers was starting, together. She pointed to a bright turquoise dress in her closet with frilly edges. “Can I wear that with tights, mama? Don’t you think that would be beautiful?” “Sure, Peanut,” I said, “You might be warm, though?” “No, it’s perfect.” She said. And it was. I could tell she was excited about the day, even though she would never admit to feeling that strong of an emotion about anything.

I brushed her hair, slowly, intentionally. I styled it a little extra special that day, topped it with a matching bow and looked at myself in the mirror. “Who are you, Susanna Peace Lovell?” I asked myself. “What are you on this earth for? To just be an advocate for Arizona? To figure out the best way for her to thrive in this world?” I wondered if that would ever be enough for me, this calling.

Walking into the classroom that first day, I was nervous with excitement. For the first week of school, Arizona and I were only in the classroom for an hour and a half each day. I remember peeking through the window before we quietly knocked, that first day, 9:15am on the dot. What could possibly be waiting for us? How would my daughter acclimate to a new environment? Would she make new friends?

Those first few weeks were tough. Arizona and I were broken and challenged, but held so sweetly in those moments of unraveling. I had the distinct realization that I was coming out of a fog. The past few years were a blur; moving from task to task, not being connected to any particular moment. To be honest, I was barely getting from one day to the next. I was completely disconnected from any purpose I had in life other than being a caretaker to my child and wife to my husband. And so, as these layers began to peel back for me during these minutes and hours at Cheerful Helpers, I felt the light starting to shine in me again. I felt released from having to hold everything together to a place of surrender and tapping deeper within to discover my own needs and desires. It certainly wasn’t a comfortable process, but the liberation of starting to understand who I really was at my very core, was a thrilling discovery. I was tingling from head to toe at the prospect of the possibilities Cheerful Helpers brought to the table, not just for Arizona but for me as well.

-Susanna Peace Lovell, Alumni Parent

 

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.