Planning for the (Un)expected


Shopping, educating, and cooking are some of my favorite things.  So, when I received the offer to go on a “Mom Shop Along” at one of our favorite grocery stores, I jumped at the chance.   This was an opportunity to communicate my grocery shopping preferences as well as our special dietary needs to the Raley’s personnel.  (Raley’s writes about our family and my gluten free tips here:  June Mom of the Month.)

The day of our Mom Shop Along, I began to get cold feet.  Raley’s management was going to follow my boys and I as we shuffled through coupons, reached for products and read labels through every aisle of the store.  What was I thinking?  I agreed to come at 4:00 in the afternoon; not only a down time for my kids, but a crowded time for the grocery store.   As I pondered the (un)expected things that could potentially happen, I considered cancelling.

Living in the community with a special needs child-or even juggling multiple children, calls for a certain state of mind.  I can opt out of life and isolate myself and children because day trips are too stressful, or I can choose a “can do” mindset.  I told myself the words I often use to motivate my boy, “I can do it”.

Then I began to think through the effective tools I use to help our special needs family be successful in the community.

Communicate with significant others before the event

In the event our shopping trip became too stressful for my son, and honestly, in order to manage my own anticipated stress, I needed a plan.  I contacted the Raley’s personnel to inform them I needed to assess how my child was doing before and during the shop along.   They were agreeable.

Ahh, step one of operation de-stress was taken care of before we arrived.

Have a back-up plan for your child

As always with special needs, you need a back-up plan.  It serves as an escape and survival plan if the event becomes too stressful or overloaded with stimuli.

The back-up plan may include the following:

  • an early exit
  • spouses bring both cars if family members want to remain in the event uninterrupted
  • discuss pacing the child’s activity level with a quiet time and quiet place
  • bring necessary items in a specified bag to soothe the child (lotion, paper, book, textured ball)
  • bring behavior chart, and don’t forget the frequent verbal praise and rewards
  • inform your host about your plan and make any gracious requests as needed

Today my back-up plan included frequent verbal praise for making good choices, as well as the reminder of his favorite smoothie he would receive at the end of the event.  If he became too grumpy (which is often the case given  a stressful situation in the late afternoon), I would be sending him to hang out in the van with his brother.  (Safety note:  It was not hot outside, windows are cracked, both boys are legal age to be in the car alone, and we often come equipped with paper, pen, or dvd player to help him pass the time).

Educate those who will be with you

I am always learning, when I let others know our special needs, they become team players with us.  Educating others in the mission of helping your child and the event be successful, gets others on board.  When they understand why you are bringing a chart, gummy rewards, or addressing behaviors a certain way, they will often become an emotional and physical support person for you.

What special needs family couldn’t use another team player in their corner?  I am finding when I am open about our needs and plans, I am less likely to feel the stress of sticking out like a sore thumb.

Stick to your plan

Under the pressure of being watched, stared at, or misunderstood, do not shrink back my friend.  Stick to your behavior plan or your operation de-stress plan.   Be there for your child.  Remain consistent, confident and even-tempered in order to carry out whatever your child and your family needs.

I believe in being respectful and courteous of others around us, but my mission is first and foremost to my own family.  If I bend and change to the pressure of how others perceive us, I will not be the strength and consistent parent my special needs child requires.

Enlist buddies

Thankfully, my son has brothers who are attentive and compassionate buddies to him.  I communicate the plan with them and they are team players.  The brothers have been talked with and have the information they need to know in order to help the afternoon go smoothly for all of us.

Sometimes my youngest son doesn’t understand it all and he doesn’t really need to.  I am always trying to strike the balance between expecting the siblings to be vital family members, but not burden them with responsibilities which do not belong to them.

Mommy-helpers are always a great assistance to any Mom who is juggling multiple kids.  I was given the great advice years ago to enlist a young girl, not quite babysitting age, to hang out with us when we run errands.  Now that my son is a teenager, we have a peer-helper; another teenage boy who comes to hang out with our son.  Together they play Wii, walk the dog, and swim.

Express your gratitude

I don’t know if those in our lives will ever comprehend how vital they are to our day-to-day survival sometimes.  Having the opportunity to be active in the community with people who are willing to be flexible and understanding of our special needs family is a true gift.  It may even be a rare gift.

I want these people, including my own children, to know how grateful we are for them.  Whenever we have the opportunity, we write thank you cards, provide financial support, and try to express actions and words of gratitude for helping us make life more enjoyable and successful.

Thanks to Raley’s, by the way, for taking the time with us on the Mom’s Shop Along!  They were generous with their time, questions and note-taking, in order to provide even better customer service to the community.

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Adjusting to the Gluten Free Diet

May is Celiac Disease Awareness Month.

The diagnosis of Celiac Disease often comes as a big relief.  Finally, an answer to the physical and health issues you or your child have been battling with for so long.  Now as the reality sinks in,  you know you will be making a lifestyle adjustment as well as a nutritional one.

You begin to realize a gluten-free diet means more than staying away from wheat.   Gluten is hidden in a myriad of grocery items while carrying an alias name.

Hidden Ingredients

Gluten is in pastas, couscous, and some corn chips.  It is also in typical pantry items:

rice pilaf

cereals

salad dressings

bbq sauces

prepackaged meals

gravies

soy sauce

For a complete list of items with gluten to avoid:  Unsafe Gluten-Free Food List (Unsafe Ingredients).

Sort out your cupboards

Get familiar with the gluten and gluten-free items you presently have in your cupboards.

Read every label and look up every questionable ingredient from  Safe Gluten-Free Food List (Safe Ingredients).

Separate the gluten from the gluten-free items you already have.

Make a list of staples you need to replace with gluten-free staples.

Sort out your feelings

Many individuals and their families report experiencing a range of emotions as they adjust to the gluten-free lifestyle.  Take your time listening to your feelings: your fear, irritability, loss or grief.  Respect your feelings by listening to them and giving yourself time to work through them.

Panic.  You may initially feel panic:  What will I pack for lunch? Will I ever eat out at a restaurant?   What kind of birthday cake will I make?  What do I make for dinner tonight?  Will everyone eat gluten-free?

Grief.  It took me a few months before I realized I was grieving over my love for baking.  I love baking decadent layer cakes and treats from scratch.  I am not a fan of gluten-free flours and its taste and texture in baked goods.  I avoided baking for a number of months and really missed it.  You may grieve the loss of  your traditional family stuffing recipe or other family favorites.

Stress.  There is so much information to figure while the weight of the responsibility falls on you.  Perhaps you expect yourself to figure it all out immediately.

Feeling Overwhelmed.  My kitchen cupboards and garage became an unorganized mess.  Since we decided to keep gluten items in the home, the pantry items doubled in quantity.  I do not have a natural knack for household organization, so it became a lengthy task as I tested and retested ways to organize.

Sort out your questions one by one

Make a list of the questions and hurdles you need to tackle.  Give yourself permission to sort out one hurdle at a time.  Here are a few ways I did this:

Restaurants:   I ordered a restaurant guide from Gluten Free Restaurants, Gluten Free Shopping | Triumph Dining.  This guide lists restaurants throughout the nation and the gluten-free menu items they carry.  One of our favorite restaurants listed only condiments.  Others offered a pleasant surprise with their list of gluten free food choices.   We carried this guide with us while traveling to areas with unfamiliar restaurants.

Thankfully, the internet makes eating out gluten-free much easier.  Look up the restaurant menu online and check the ingredients.  Usually grilled chicken, baked potatoes, scrambled eggs and bacon, cheeseburgers with no buns and salads are basics that restaurants are able to serve gluten-free.  Be careful about marinated chicken and salad dressings (ask for balsamic).  You can avoid disappointment if you check the menu and make a list before sitting down in the restaurant.

I often carry NutThin crackers or corn tortillas to a restaurant so our son can have a crunchy appetizer while the rest of the family nibbles on bread or chips and salsa before a meal.  (By the way, salsa is naturally gluten-free!)  I have found restaurants do not mind if I carry a small container of gluten-free salad dressing or brown rice to add to the meal when they do not have these gluten-free offerings on their menu.

Family Meals.  What about the two brothers who don’t need to give up their favorite cracker or sandwich?  Some families make their entire home gluten-free so the identified person does not feel left out.  After wrestling over this decision, we decided the family dinner will always be completely gluten-free.  Since we are all sitting around the table together we want to share the love!

Breakfasts, lunches and snacks are individualized.  The brothers have their own snack drawer and AJ has his special gluten-free cupboard accessible to him.   Fruit is always available in abundance for all.

Arm yourself with information.  I went to the bookstore and bought several books and cookbooks.  I really overdid it.  One resource book on Celiac Disease, one cookbook and one desserts book are plenty.

Over the years, I prefer to use my regular cookbooks and family recipes, adapting them as little as possible to the gluten-free diet.  You will discover several recipes are already gluten-free or can have simple adaptations without giving a gluten-free “taste”.

Grocery Shopping.  Many grocery stores list their gluten-free items on-line.  Print this list, check the items you need, and bring it along on your next shopping trip.  Some grocery stores also offer a gluten-free tour.  I have walked through grocery stores with store managers as they ask questions to understand what a gluten-free shopper needs.

Talk with the customer service representative in your local grocery store to discuss the items you need for your family.  Most of our local grocers want to meet this growing need for their customers.

Look for further Gluten Free posts from me this month:  Special Considerations for Special Needs Children on the Gluten Free Diet and Fret Free Gluten Free Recipes to get you Started and Cross-Contamination and the Gluten Free Diet

Tell me how your family has made the adjustment to gluten-free living.  What were (are) your greatest hurdles?

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