Holiday Survival

The holiday are the most wonderful time of the year ...right. Except if your darling son or daughter is on the spectrum, then the sights, smells and sounds create anxieties within a person who likes things just the way they know them. To this point I remind you all about the amazing tool of cuing.

“Cuing is the act of front-loading the child with information we assume they know, but have really no clue about. So cuing prior to a social engagement is an exceptional tool. Our pattern (when visiting my my parents) is that on the hour long drive to the grandparents home we chat. We talk about things like who else is going to be at the house, what we will be doing, what we will be eating and how long until we eat. These are important pieces of information to front load.”
Excerpt from Embrace Unique, the power of hope, humor and love on the spectrum

With all the extra things that are happening, remembering  to load the presents, have the family dressed correctly, making sure the dessert is cooked and plated, we often forget to take care of the emotions. Managing the emotional health of your family should be an item on your holiday to do list. If we do not talk the time to explain (possibly more than once) what the day will look like, I would bet there will be drama. It’s a family gathering so I can guarantee there will be drama, but let it come from your sisters family not yours.

Survival Guide:
*Take time to review the day with your whole family; information is power
*Pack a bag of yummy treats you know your child will enjoy; no fun if you can't eat anything
*Make time for a quiet nap or walk, away form the activities of the day or weekend; break time is healthy
*Be mindful that your stress is the guide for how they should act; try to enjoy the special time of Holidays together!

ATYPICAL has a message for all!

True confessions, I am a Netflix binge watcher. There I said it. Sometimes for fun, other times for escape (don’t judge you do it too). This week I saw a new show pop up. It is called ATYPICAL.  The short plot summary says “Sam, an 18-year-old on the autism spectrum, decides it's time to find a girlfriend, a journey that sets Sam's mom on her own life-changing path as her son seeks more independence”. I am not sure if this show will help me escape, but I’ll watch the first episode and see what it's all about.

After the first show I was hooked and ready to binge. After viewing the 10 episode series (again don’t judge they are only 30 minute shows), we get to know the fabulous and the crappy behaviors of the mom, the dad, the younger sister, the therapist, and a supporting cast of school mates, support group friends, and coworkers.  Sam narrates much of the show, so we get an insightful look into the black and white thinking, the need for order, and rules that he uses to navigate and try understand this new social territory. As we know each new chapter of life brings with it new rules and guidelines. Sam at the age of 18 has managed with the support of his family, and coworkers to navigate fairly well thus far. He has meltdowns, perseverates, and draws connections to his favorite topic Antarctica, which often help interpret social behavior.

The creator, Robia Rashid and writers do no shy away from sharing the challenges that come from parenting a unique child, nor do they miss the opportunity to show the challenges of being their sibling . I found myself being at times proud, and furious at each of the characters.  Each of the shows main characters are flawed, just as all we humans are.

Sam throughout the season effectively uses the tool of practice to be prepared for future situations. When he is met with the comment “practice makes perfect”, Sam replies “Practice doesn’t make perfect, practice makes better, nobody's perfect”.

And in the end….that is exactly what the show is about….Nobody's Perfect! It turns out to be a great message for all of us as we face the daily adventures of raising a child or adult on the spectrum. I think I have a new mantra.

It was an...Accident

Occasionally there are 'happy accidents', like bumping into some you haven't seen in a very long time at Disneyland. But more often than not 'accidents' are unfortunate incidents that you rather wish would not have happened. They make us irritated, angry, disappointed or worse.

We can't rid the world of accidents, but what we can do is turn them into teachable moments. A teachable moment is one that requires the "teacher" to offer compassion instead of anger, and be calm rather than be frustrated with the situation. A teachable moment allows the "teacher" the opportunity to illustrate a life lesson that really can best be taught by experience.

So what do we do when our child comes to us and says, "I'm sorry, it was an accident"? No matter whether it was a window, a family heirloom, or a bumper, we must seize the opportunity to help them learn from their mistake. With many people, and that includes those on the autism spectrum, a life experience is often a much better teacher than words alone.

I believe that the more senses and emotions we use during an experience, the greater memory, impact and effect it has on our future. If we experience something through sight, hearing, and touch our understanding is deeper. So when we learn through an experience, like an accident, the chances of us making the same mistake again are significantly less. We call this learning from our mistakes.

What is the lesson to be taught after an accident? Reviewing the moments prior to the event and considering alternative options will help our children make different choices in the future. Maybe we don't play baseball with our friend’s back to the kitchen window, rather we practice a bit further away, or shift the direction that the ball is headed. Maybe we don't play fetch with the dog in the living room; rather we walk in to the backyard where everyone gets fresh air. Maybe we don't touch the radio while driving, rather we pick a station and let it play until we are parked. Hindsight is a great tool. What could we have done differently?

After an accident we “teachers” have the incredible opportunity to offer not one but two lessons. The first thing we teach is that there are options that can help reduce the risk of an accident, and each requires a little prior planning. The second and equally important lesson we teach is that accidents, or problems can be handled with calm tones and clear heads.  We are not only teaching with our words but with our actions as well.

Whose Line is it Anyway?

I was recently binge watching the show 'Glee' on Netflix, and catch the episode where they pay tribute to a cast member that died during their 5th season. As two actors discussed their great loss, the student points out to the teacher that this line between the two dates on the plaque represents his whole life. It was the words that the teacher said in response that lingered with me.

She said, "What are you going to do with your line"?

It got me thinking about what am I doing with my line?

I have many titles in this line; daughter, sister, aunt, wife, friend, boss, donor, author, advocate and volunteer. However, I think that mom is my most important title.  My son has truly blessed me with so much; motherhood of a special child...

Has introduced me to new was of thinking

Has taken me to my deepest sorrow

Has brought me my greatest joy

Has taught me patience

Has given me the opportunity to support others

Has shown me I can do things I never thought possible

Has made me find gratitude in the simplest things

Has made me a teacher

Has taught me how to cook new foods

Has created a writer, presenter and advocate

Has taught me so much about how one human can love another

I'm proud of my line, and I have my son to thank for that.

I will finish this blog with the actor’s final words of the episode "Have a good line"

Pay Attention to the Fuel Gauge

Before we reach the age of 16 we know enough about cars to know that they require gasoline to run.  We all understand that after about 300 miles of driving (less if you are going uphill or sitting in traffic) you have to fill up the tank. The fact is the car, either Kia or Jaguar, needs something as simple as gas to keep it moving forward.

I’d like to apply that same logic to People. A person can go roughly 5 or 6 days with out refueling (less if your family has had a particularly full or challenging week).  Your week may have included; a change in the schedule at work, someone getting sick, an argument with your partner, or a difficult test that made the week more stressful.

However, rather than recognizing that your tank is running low, we tend to ignore the fuel gauge and keep going, sometimes even after the red light goes on. We would never ever think we could magically make the car go another 20 miles without gas, why do we then think that we don’t need to stop for refueling?

Ever find yourself running late for an appointment, only to jump in the car and realize you didn’t have enough gasoline to get you where you needed to go, and you now had to spend extra time and stop for gas? That is what we are doing by not paying attention to the fuel gauge.

This week I spent 2 hours with a glass of wine and a dear friend. We laughed, swapped stories of our children, and made future plans.  I got up from the patio table and felt significantly lighter in my mood, and while I walked to the car I noticed a larger smile on my face. I realized later on that evening, that there was a calm in my voice I hadn’t heard in a couple of days, I was able to tackle a task I had been procrastinating on, and I fell asleep with a clearer, calmer mind.  My tank had been filled.

What would happen if we begin to treat ourselves a bit better than the family car in the driveway? What would happen if we had real expectations for what we can and can’t ask of ourselves? What if we gave ourselves the permission to refuel on a regular basis? 


What fills your tank??

Better Living thru Chemicals?

Better Living thru chemicals?

My 80 something year old mom thinks that all issues can be solved with a pill.  Got a problem, visit a Doctor and get a new prescription.  There is generally not one magic pill to fix all that ails you.  Some medication options are experimental, some are happy side effects from other diagnosis, and some are… well, not legal in all states.

Me, I believe in a multi-faceted approach to problem solving. Therapy, medication, and environmental changes and activities are all part of the process.  However, sometimes after years of trial and error, a new direction and medication is recommended. 

Six weeks ago we embarked on just that path. Being the eternal optimist, I am always open to hear about new and exciting treatment options and consider the possibility of what changes they could bring.  As I have done with all the prior recommendations, I opened my laptop and read many good and bad reviews, possible side effect and potential benefits. I must admit that this approach can be scary, as people who have had bad experiences are often the first to share or complain. After getting overwhelmed by the information, a leap of faith is often in order. So out of equal parts desperation and hope, we tried it.

I am, at this moment, ecstatic with the almost miraculous changes ½ of a teeny tiny pill can create. My son’s ability to stay calm in situations of frustration has been dramatic. His interest in his own success is exciting. His engagement in the world around him, and needs of others has altered significantly.  

Modern medicine continues to find solutions that the natural human body struggles to do itself. I continue in my hopeful belief that there is always the ability to improve oneself.

We are all a work in progress, and my job as mom continues to be helping my son be the best he can be!

Planet age v. REAL Age

Planet Age vs REAL Age

You are probably asking, "Planet age what is that?" Simply put Planet age is the day we arrived on the Planet. Someone born in 1995 would be Planet age 19.

But what age are they 19 really? To determine REAL age we must assess the age at which they are currently functioning. We need to look at behavior, social development, maturity, skill mastery, and emotional development. All those criteria go into determining REAL age. If we consider all these factors they may really only be 15. 

Why is this important? If we don't pay attention to our child's REAL age then we are not effectively meeting their needs. Their development level is where their learning can happen. If we are teaching to their PLANET age we can be setting them up for failure! Wasting time and potentially a lot of money. They are just not developmentally ready to handle that new task or experience.

How do we determine their real age? Take a closer look at your child's peers. What is it that they are doing, what skills have they mastered. Now go backwards, look at a child or teen a year or too younger, then a year or two younger. Based on what you see you can come up with a rough idea of their REAL age. All children develop at their own pace, but we can help build our children's self esteem if we are teaching to their REAL age.

This is not an exact number, but the question we need to ask is; if your child's planet age is 16 and his real age 12, is teaching them to drive a good idea.  I going to say not yet. What if your child is planet age 6, but real age is 3, are they ready for kindergarten, probably not. Spend time helping him or her master some of those pre K skills in a safe and one on one environment.

Understanding our child's real age, helps us set reachable goals, that will help them bridge the gap to their neuro typical peers.

WDW is super accommodating

 One never knows when they travel with someone who has special needs how the trip is going to go. For me I always try to visualize ahead, pack a virtual bag to be ready to prepare for dietary restrictions, as well as thinking up plans B and C, because plan A often fails. But on this recent trip to Walt Disney World, I didn't need to have any of those bags. Disney has figured out how to accommodate their guests, and help them to have the best vacation ever.

From the moment we landed in Orlando, Florida the Disney magic took over. They drove us to our resort, and later delivered my son's camera that he left on his seat on the bus. I drive every day, so the decision to stay on Disney property and have them transport us using their buses was easy. The next treat of Disney magic came after I asked the gal in the food court at our resort if they had anything gluten free for dessert. She said if the chef was in they could make us gluten free beignets. As my son and I savored our fabulous GF beignets (and got covered in powered sugar) we knew this was going to be the best vacation ever.

And Disney continued to accommodate us at every corner. At Hollywood studios, the ABC commissary manager came to speak to us made my son a burger with a gluten free bun and fries from a designated fryer. She even turned my chicken caesar into a salmon caesar (since I don't eat meat). At the Sci Fi Drive in we enjoyed dairy free milkshakes while we ate in the cool cars. The next day at EPCOT, we dined at Akershus  In Norway. The chef came out from the kitchen and offered to make my son rice pasta, to go with their fabulous Norwegian meatballs. At the Animal Kingdom they are testing a new allergy program and have a kiosk full of allergy free snacks for sale, and information about the various restaurants at the park and what they can make. My son chose a gluten free, dairy free pizza for lunch from Pizzafari. At the Magic Kingdom we dined with Pooh, Piglet and Tiger at the Crystal Palace. The chef came out and walked us thru the buffet, telling us what things were safe to enjoy and what items were not. He even sent out gluten free rolls and a cup of dairy free ice cream for dessert. 


I was beyond pleased at the lengths that Disney went to make sure we were well fed with healthy and safe food. When a kid can have gluten free Mickey Mouse waffles on vacation, it just doesn't get any better than that.

Struggling with Juggling

I must admit that when I wear one hat, I can be amazing. But most days I don’t have the luxury of wearing (or I dare say juggling) only one hat. I have my mom hat, my wife hat, my sister hat, my daughter hat and numerous friend hats (some days I even wear my sister in law and my aunty hat). Although it is nice to have so many hats to wear (or wonderful people in my life), it is a challenge for me to wear a few hats at the same time. Each one of those hats comes with a set of responsibilities, tasks and a level of understanding of the others persons needs.

When my family gets together, which often happens this time of year, I find myself juggling the needs of numerous people. My senior parents, my two sisters, my husband and my autistic son all require different things from me. Additionally, I have a different relationship with each person. That means I speak and act differently with each of them. For this reason when everyone is together I struggle to juggle what everyone needs. An example might be me (a vegetarian) cooking a gluten free, dairy free, kosher thanksgiving feast with two turkeys and all the fixings, in my home. Somewhere in the need to take care of everyone else, I forgot to take care of me. I spent the entire next day in bed, completely whipped out physically and emotionally.

So why am I blogging about my juggling act? Because I suspect that I am not the only mommy out there who juggles. My advice...try to remember that you are an integral part of the puzzle that makes your family work, and you can’t sacrifice your sanity and your health.

I will remind you and you remind me :) Happy Holidays

Facebook can make me sad

When I have a few moments in my day, I like to sign on to Facebook and get caught up with who is traveling, who is eating something yummy or  find out what book someone just finished.

Often times I get a post about someone's son or daughter.  Many post these days are about parent trips to see their children in college. Although I am happy to read the places they are traveling to, the awards they are receiving or the pride they are feeling. Sometimes it stirs up a little emotion. 

Much like the holiday cards that begin arriving in the mail after thanksgiving. People share only the most positive and wonderful news about their children. There is no mention of the stress, the meltdown or the argument that occurred earlier that day. As much as I understand that it is not really socially acceptable to whine on Facebook, and what I am reading is only the most wonderful news they have to share.  Still I get little green twinges of disappointment. I wish I could be traveling to a University out of sate to visit my independent child in their new life. I wish I was sharing those exciting stories as well. 


And it is at those moments that I feel a sense of disappointment creeping in, that I must reframe. I think it in only human to have emotion, however, it is what we do with those feelings that defines us. I refocus my thoughts on all of the blessings I have in my house. The healthy and wonderful young man I see in front of me. In many ways his accomplishments are greater than any awards. He has traveled a great distance to become the young man he is today!  He takes smaller steps forward than some of his peers, but they are forward steps and worthy of my pride. Reframing is a tool we can all use when things get us down.  When I reframe, I can see the whole picture and I am joyful to live in my world.

Chutes and ladders

Do you remember the game of "Chutes and Ladders"?  You roll the dice, move around the board, climbing ladders to take you up toward your goal (winning the game). Occasionally you would land on a chute and your player had to slide back down a few rows, only to have to climb back up again.  

I have decided life is often like the game of "Chutes and Ladders". You teach your children  all the wonderful independent skills they need for good hygiene, nutrition and how care for themselves. You teach them how to engage at school and in social situations without you. You watch as they climb the ladders of life, taking on new challenges without your assistance. You feel so proud. Then suddenly, without any notice, they land on a 'chute' and go sliding back down. You are faced with a child who is now acting 10 years younger than their chronological age. The frustration is great because you know what they are capable of. You feel angry, and disappointed because you have been working on improving these behaviors for years.

But what we must remember is that every slide is a teachable moment. It won't take 10 years for them to get back on track. If you have ever tried to quit smoking or loose weight you know, "chutes" happen. Encourage them with what you know they can accomplish and help them get back on track. Focus on the positive "ladders" they have climbed and try not to dwell on the disappointment of the "chute". In time they will be climbing again, and higher than you thought they could!

When to Share

Blogging... The next great adventure. This past weekend I had the wonderful opportunity to share my experiences with attendees of the Ages and stages conference in Pasadena. I so enjoyed your questions and concerns. Over the coming weeks I will try to answer some of your questions via my blog, because many of you had the same concerns. Today my topic is 'who, when and how to share that your child has autism'.
I hear this question a lot. Some of you have had bad experiences sharing. One mom shared that her friend stopped calling and talking to her. Although this seems sad, it is really only sad for the friend. This person is going to miss out on the experience of watching her daughter grown into a beautiful young woman.
We might be inclined to try to hide the real truth from our family and friends, but in our hearts we know that they know something is not typical.  I spent years trying to hide the truth, only to discover that people thought my kid was just being a brat, having tantrums and fits at social gatherings.  When I did begin to share, people were very supportive of what I was doing and much kinder to my son.
Who should you tell. I think it is best to start with those people closest to you. Those family friends or girl friends who know you best. Find a quiet moment, probably without your child nearby,  over a cup of coffee or a glass of wine. Share what you have learned about your son or daughter. Say that you hope they can support you on this adventure. If they can, they will. Some people just don't understand. 
I will add that not everyone will make this journey with you. You will need to add some new friends who also have children with challenges. Together you will laugh, cry and share the greatest adventure of your life.