Monday, June 2, 2014

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.