Going Gluten Free? Take it slow

Ten steps to a pantry makeover

Recently I have had quite a few parents ask about our diet for C and how we manage the expense of his dietary restrictions. When C was diagnosed, a blood test revealed that he had an egg and wheat allergy. Though he does not have an anaphylactic reaction to the allergy, it is clear that it affects his body. He will start to stim more, he starts to use jargon, and his pupil's even dilate. Though the allergist said these are not common symptoms of an allergic reaction, we have learned to expect the uncommon with C.

So, we moved forward with not only changing the way C eats, but have revamped our entire family's eating habits. Though we don't all follow a gluten free diet, we have removed many food items containing wheat or egg. We have also eliminated all dyes, all foods containing GMO's, have moved to primarily organic meat and produce, no longer eat processed foods, and limit sugar intake.

Before you decide that you need to do a complete overhaul of your pantry, I have a few suggestions to make the transition easier, and ease the burden on your pockets.

1. Don't eliminate everything at once! Take it one step at a time, one ingredient at a time. If you just stocked your pantry with cereal, bread, pasta, etc., try eliminating processed foods first. I have found that making things from scratch takes as much time as prepared foods, and can be a fun teaching moment for kids (and husbands too)
2. When purchasing organic produce, start with the "Dirty Dozen", as shown by Organic.org. These foods are listed based on the previous years pesticide residue testing and then placed in the "Dirty Dozen" category as foods recommended to purchase organic.
3. If you are eliminating foods to see if there are any behavioral effects on your child (or yourself for that matter), ensure that you only eliminate one food at a time, and give it a minimum of 2-3 weeks to ensure that it is completely removed from your system. This way you will be able to pinpoint any culprits of unwanted behavior.
4. Check with your butcher to find out where your meat comes from. Ideally you want to eat meat that comes from farms that grass feed their animals, allow them to free roam, and are free from added hormones and antibiotics.
5. Natural doesn't necessarily mean organic. This is confusing because there are strict regulations that come with the FDA Approved Organic label, whereas "Natural" does not have the same criteria. With that being said, local and small farmers don't necessarily have the means required to pay for the FDA to approve them as organic. Check with your local farmers. KI Farmer's Market farmers are very open about their farming practices.  Farmer's Markets are also a great way to support your local economy!
6. Shop the sales! I only buy meat when it is on sale. I usually only buy from Whole Foods, however Trader Joe's has great prices on Ground Beef and Frozen Chicken Breasts. I find out what is on sale and try to base my meals around those meats. This is where planning ahead is key!
7. Plan Ahead!! I always look online at Whole Foods and take a look at their weekly flyer. They also have deals of the day, and Facebook will usually update you on the good ones. Once I know what is on sale that I need, I plan out my meals for the month... Yep a month. I don't necessarily have a specific day in mind when I will cook a particular meal, but I have a plan for everything I buy. This helps deter me from overbuying and sometimes I can even stretch my meat over 6 weeks.
8. Know your staple pantry items and stock up when they are on sale. C Loves Z Bars, but they don't often go on sale. When they do, I ensure I stock up. I have found them as low as $.50/ bar, which is a steal! I also know that my kids like the same basic things in their lunch. We always have a fruit, a protein, a snack, and a sweet. Chips at Trader Joes are just $1.99 per bag!! There is no other chain store that has chip prices that low, and my favorite part... The ingredients are just potatoes, salt and sunflower oil. I can pronounce all of those ingredients!
9. Try making things from scratch. You pay for someone else to process your food, and I think it is a waste of money (in my personal opinion). I bread my own nuggets, cut my own french fries, mix my own pancake batter, etc. These are kid staples that can be costly. When I make my nuggets, I make a Gluten Free Batch, and a Panko Batch. Everyone can enjoy them, and they literally take 10 minutes more to cook than oven baking processed nuggets. The very best part... I know what's in them. There is no mystery meat!
10. Don't beat yourself up. If you can't afford organic, if you can't make your own nuggets, if you don't have time to shop in 3 different stores, don't get discouraged. By slowly changing your pantry over, slowly changing your eating and cooking habits, you are making a difference for the better.

We saw a difference in C's behavior within the first two months of changing his diet. I encourage you to speak with your pediatrician or family doctor, and take it slow. It is a hard change for parents and kids. We all get stuck in our habits, and routines, and changing a child's favorite foods, especially if they have special needs, can be a daunting task. I repeat... Don't make the changes all at once!

Some great resources for Gluten Free recipes and healthy eating are:
Trusted Table
Eating Right
Gluten Free Goddess
Whole Foods
Trader Joe's

The Wanderer... continued

PAS - Public Alert System

After "The Wanderer" debuted, I had several parents approach me with similar concerns regarding their child and their own fears about their child wandering. It occurred to me that I took the suggestions of other mom's, and information from the AWAARE website, but hadn't done my due diligence in effectively researching our state and local law enforcement's protocol regarding eloped children with IDD (Intellectual/ Developmental Disability). So, I did some research. What I found was this:

1. The Amber Alert is only used if a child has been confirmed as “Abducted” and the Alert will only be used if there is proof that he/ she is “at risk of serious bodily harm or injury”. www.amberalert.gov
2. The Silver Alert in the state of Maryland is used “in instances of an adult, suffering certain cognitive impairments, has been reported missing.” The criteria dictates that the individual must be over the age of 60, have a cognitive disability, poses a threat to one’s health or safety, and is operating a motor vehicle. www.mdsp.org

Other states  have included individuals with intellectual or developmental disabilities in the Silver Alert System or their variation of the Public Alert System. 

After learning the above, I decided to take further action and call our State Senate Office to speak with Senator Joanne Benson, who serves on multiple committees, including Education, Health and Environmental Affairs Committee, Joint Committee on Children, Youth, and Families, and Joint Committee on Access to Mental Health Services. Though I was unable to speak directly with the Senator herself, I was able to find out from her aide that there is no pending legislation for a Public Alert System that will include people of all ages that have a diagnosis of IDD. I briefly introduced Kinera Foundation and expressed my personal concern that if my child were to go missing, statistically his chances of being found unharmed are slim, and that it would be a travesty to our community to have to endure a loss, in order for the issue to put on the forefront. She suggested that I speak with our local law enforcement agency directly and asked that I call her office back with the information I was given. 

So with a mission in mind, I set out to our local fire department. I was met by two young and enthusiastic firemen who wanted desperately to help, but could only tell me that if my child were to go missing, the Sheriff's Office and Maryland State Police would be dispatched. By happenstance, two state troopers happened to be eating lunch at the firehouse, and the young firemen were happy to pass me off to a better authority on the issue. To their credit, they did remain in the room, while I gave the unprepared uniformed officers the third degree. 

Here is what they told me:

There is currently no Public Alert System that includes individuals with IDD in the state of Maryland. If one of our loved ones were to go missing they urged me to call 911, even as quickly as within minutes of not being able to locate the missing party. When I questioned the advice to preemptively provide our local law enforcement and fire department with a current picture of our child with IDD, they indicated that while in theory it was a good idea, it was not realistic for them to retain in an accurate filing system all of the children in our community who may elope. What they did advise was to keep a current photo of our child in our possession, so that it can be disseminated to the search party quickly.

I then asked the "WH" questions... who would be dispatched when, what first responders would be made available. I reminded them that we live in an area surrounded by water, woods, farms, and main roads. If our child is missing and we call, first the Sheriff's Office will be dispatched to assess the situation, and make calls to other agencies. I questioned how they handled someone who likely would not respond to their name being called, may even consider it a game of Hide and Seek. In that instance, MDSP would likely call in the Police Service Dogs, to try to pick up and locate a scent. The officers briefly touched on the ability to track footprints, and any disturbances in the vegetation made by a human, and the ability of a dog to track a scent just by the skin particles that fall on leaves, grass, etc. as we pass through. I digress. They then indicated that if needed, they had the ability to dispatch helicopters to do overhead surveillance. And if there is fear that missing party has approached the water, the DNR and Coast Guard can be called upon. 

For their lunch being interrupted, and a crazed mom asking a million questions, with tears pricking the corners of their eyes, they were incredibly professional. They were concise and informed, however I still feel that our kids may need more. 

There is something to be said about being proactive vs. reactive, and in this particular case, it could be a matter of life or death. 

As I write this, my heart is pounding, and my imagination is running wild. We have installed the door and window alarms to further protect C from leaving the house without our knowledge, but it still happens. The alarms get turned off, we hear the alarm and in the time it takes to call out to see if the other parent is on it, C has already made it to the street. This is real, and it is scary, and we need a better plan. 

So friends, I am working on it. I spoke directly with Senator Benson and she agrees that to not address the need for those with IDD to be included in, or have their own Public Alert System in place, is to concede to tragedy. Stay tuned, I will continue to update as I learn more about what can be done. 

** Please take a moment to say a prayer for Avonte Oquendo. He has been missing for a week and there is a $70,000 reward, with help from Autism Speaks for his safe return to his family.

The Wonderful World of Disney, an update

I have said it before, and I will say it again... We are Disney Fanatics. We totally embrace all things Disney and our next visit is a revolving topic at our dinner table.

With that being said, we put the brakes on planning our next trip to the Wonderful World of Disney when we heard that the Guest Assistance Card was being revamped. As first reported by the Today Show, it became apparent to Disney that there was significant abuse to the old system, and a new one was needed to ensure fair and equal access to rides, for all guests. I called Disney, when talk of the new system began to circulate, to hear their plan firsthand. While they didn't have much information to offer, they did indicate that October 9th was the magical day for change.

So... here we are, it is October 9, 2013 and today is the day that Disney Theme Parks have unveiled their new "Disability Access Service Card". While a large part of me wants to protest the new rules, I am holding out hope that Disney will take each family and their unique disability, as a separate case, rather than lump all disabilities together. Diary of a Mom had the privilege of speaking directly to a Disney representative last month, and voiced her concerns (our collective concerns) regarding the rumors of the new policy and procedures. She also was given the opportunity to offer insight on things that would work for families who have children with sensory processing disorders, Autism, and other related diagnosis'. Diary of a Mom truly believes that though Disney will not allow for the previous system be abused any longer, they recognize the need for each family and their needs to be addressed on an individual basis.

The more I dwell on the topic, the more I play devil's advocate, the more I realize that Disney had to make a change. Unfortunately, there are those who abused the system. Disney could no longer allow the Guest Assistance Card to be a "Get out of line free card". We have had nothing but positive experiences with the Disney Cast-members and Guest Relations, and while we were not privy to the knowledge that such a "Card" existed on our last trip, we have every intention of being better prepared when we do return. I did say "When". We know we will return. We will wait until Disney has the quirks and nuances of their new system worked out.

What we need to recognize is that Disney, unlike many other theme parks, has a system for our families that allow everyone to enjoy their day. We don't want to spend hundreds of dollars on a family vacation that may lead to meltdowns, tantrums, overload, etc. Disney knows that there is a need to allow every guest the opportunity to enjoy their park in an equal way. Equal for our kids sometimes means that the joy is brought to them in a different manner than others. I applaud Disney for seeing the need, changing the system to stop it's unfair use, and addressing that they will need to continue to "perfect" the new system.

If you plan on visiting Disney in the very near future, and if you have a family member who is in need of additional assistance, be open minded. Allow the Disney Team to work with you to ensure that your vacation is as memorable and wonderful as you envisioned.  


For more information, visit the Disney Blog. They have updated the page to include the new policy, as well as a list of FAQ's.

"We come to love not by finding a perfect person but by learning to see an imperfect person perfectly", Sam Keen

Potty Training, a Work in Progress

"Let's get the pee-pee out"  

 

Okay friends, we are on week 3 of potty training, and it has had it's ups and downs. We decided, for C, probably selfishly, that we weren't going to have the kid that goes to Kindergarten in a diaper. Of course he didn't have enough change going on during the first week of school, so we just decided to up the ante a bit more (Insert Sarcasm!).

We chose a potty song ("Let's Get the Sillies Out" by Yo Gabba Gabba converted to "Let's Get the PeePee Out"), a reward for attempting (1 mini marshmallow), a reward for producing (3 mini marshmallows), and a timer set in 10 minute increments (from the time his pants were pulled up), and spent the last week of summer slaves to the potty.

I would love to claim success, however our child has a fear of #2 now. And in addition to not going #2 on the potty, leading to a surge in local sales for size 5T underwear :) we are creating a serious back-flow. I am considering a Mirolax regiment (proven to work with O), however with a child that cannot verbalize his need to use the toilet and to make it more complicated can not distinguish his need for #1 or #2, I fear I am at an impasse.

There is much data proving that children with Autism have a history of GI issues, including but not limited to, Gluten intolerance, Casein intolerance Soy intolerance, Leaky Gut, and constipation. Research shows that sometimes treating the Gut Issues will help alleviate symptoms of Autism, not because they are curing Autism, but because our children who struggle to find the words to describe what ails them, are forced to deal with pain, through no fault of our own, but because of our lack of understanding, and our children's lack of effective communication.

C's teachers have asked, because they are frequently changing his clothes, bleaching the heck out of their floors, chairs, and tables, that we start putting C in a pull-up again. They have assured me that they will continue to take him on his scheduled potty breaks, but with the progress we have made, will that cause him to regress? Or... should I have waited for C to be able to verbalize his need to use the restroom before potty training?

And here I am, once again questioning my decision making skills. C is five, when prompted he will pee in the toilet, but he cannot/ won't tell me he has to go. Is it selfish to want to ensure he, like his classmates, is able to wear underwear to school? Am I nuts for fearing that he will be chastised for wearing a pull-up, be called a baby?

Let's be honest, there are a million challenges I should be tackling, most of which I feel powerless over. Potty training seems appropriate, reasonable, and an attainable goal, or so I thought. Now I feel like I may have to renege pushing C to use the potty not just because he is having difficulty at school but because it could be the underlying cause of new behaviors emerging. And if I cease potty training, what will that teach him? That he can wear diapers until further notice, that if he is stubborn enough we won't follow through with the goals we have set for him?

Mama friends, I need some advice here...
Your comments and suggestions are welcome.