The Disney Experience, Part 1

Proper Prep Time

This past week we went to Disney World in Orlando, FL. Controversy has filled the pages of blogs, specifically within the Autism Community Blogosphere, in regards to the change from the Guest Assistance Card (GAC) to the Disability Access Service (DAS). Prior to our trip I researched, I called Guest Relations, I read every blog and formulated our plan of action to ensure that we had the best trip we could, as a family and one that would cater to C's needs.

Prior to our trip I had our doctor help me to fill out the application for a Handicap Pass for our car. While C is not in a wheelchair, he does have a permanent disability. One that inhibits him from safely walking long distances through parking lots. I know you have all experienced the sudden drop, where your child becomes spaghetti, and try as you might, it seems their body has become one with the pavement. This occurring while navigating a busy parking lot had me envisioning a trip to an unfamiliar Emergency Room, rather than the Magical Kingdom. Our Pediatrician had no problem filling out his portion of the application, once I explained my reasoning.

We also chose to drive, rather than fly. While it may seem like we were voluntarily torturing ourselves with a 14 hour car drive, we knew that it wouldn't be fair to C, our family, or every other person sharing a flight with us, to fly. When we calculated the additional time it would take to park in long term parking, load everything on the shuttle, make it through security, allow us extra time for potential C meltdowns, flight time, getting off the plane, baggage claim, car rental, and reloading the car... we would have saved half the time, but because we drove, we saved ourselves the stress and over 1/2 the cost of airfare. Driving works for us.

If you are considering flying and have a child with Autism, consider Jet Blue. They have launched a program for children called "Blue Horizons for Autism", and have made accommodations to  ensure a comfortable and pleasurable flight for children on the spectrum and the other passengers.

Because we have older children, and because C loves Disney Jr. and Nick Jr. cartoons equally, we chose to stay at the Nickelodeon Suites Resort. While the pools were amazing, we found the rest of the amenities including our room, run down, overpriced, and lacking the same "magic" we have come to expect from Disney properties. While we were a bit disappointed in the resort, I have to say that the staff was knowledgeable and accommodating, and helped to make up for what the resort itself had to offer. Were anyone to ask me if they should stay at the Nick Resort, unfortunately I would advise to put the extra money into a Disney property. We did participate in some of the evening activities, like Story Time with Dora, and C loved meeting Dora and Boots, and enjoyed the interactive story and songs.

We had a 3 day pass to the Disney Parks. We chose to drive, rather than rely on the Nickelodeon Transportation buses, to allow ourselves the leisure of coming and going on our schedule, rather than the preset bus schedule. Because we had the handicap pass, we were able to park right next to the gates, and only had short distances to walk. Luckily, our stroller is rated for children up to 80 lbs, and C is still within the weight range. I don't think he is ready for a full day of walking on his own. We toyed with the idea of buying the child leash, but there is just something that bugs us about tying our child up like an animal. That is another topic, and our personal preference. We are still on the fence about our feelings, some days we agree that leashes are a great idea for a child that has a tendency to bolt, and others we feel that it just points more attention to C's difference, and could leave him feeling as if he is being restrained rather than protected.

Once in the park we visited the Guest Relations office. There we were able to obtain a pass that allowed us to use our stroller as a wheelchair. This is an AMAZING benefit for those who have children still in strollers. It allowed us to wheel our stroller right through the lines, allowing C to have a place of comfort in an otherwise incredibly stimulating environment. An added perk, all of our belongings stayed with us, rather than outside of the attraction, luring other guests to check out our goods.

By doing the research ahead of time, knowing what to expect, and having a plan for C that worked for him, but allowed the other children to truly experience Disney as a typical child, made for an unforgettable vacation. Seeing C meet his favorite characters, and truly live in the moment, is a memory I will cherish for life. Knowing that my two older children did not have to sacrifice their vacation to cater to their brother's needs validated our want to continue vacationing with Disney. We are excited to plan our next trip and are even considering the Disney Cruise.

More to come on our wonderful vacation! There is just far too much information to share for one post. Stay tuned for more information on the new DAS, other tips and tricks for ensuring the best vacation for the whole family, and even a few pictures of our favorite moments.

The File Cabinet

A Verbal Stim, or Breaking into the Conversation?

"Mommy, where are we going?"

Did you hear that?? He asked a question, as I was getting his shoes and socks on, as I was preparing him to leave the house.

"We have to take your brothers to wrestling practice."

"Can we go too?"

Did you hear that?? A two part exchange? Real conversation??? One that is relative to what we are doing, what we are talking about. One that is not scripted, pulled from the files of shows and movies memorized. A conversation.

This child, I was told, would be able to speak...one day. To what extent, was in question. Just last year, it was suggested that he would not succeed in an inclusion environment, that he would be provided 1:1 instruction in a self - contained classroom. I fought. I fought hard.

Having a child model behaviors of his peers is what our children need for success. The lessons learned from "typical" classmates can be greater than lessons learned through instruction. Our children need to play, with one another. They need to foster their imagination.

Stop the scripting, I was told. It is a verbal stim, I was told. It will suck him into a world that can become dark, lonely, detrimental. I disagree. His scripting has led to conversation. When he doesn't have the words on his own, he has words, in his file cabinet that he can pull from, and keep him engaged in the conversation.

I know there are many views on stimming, scripting, and other behaviors associated with Autism and Sensory Processing Disorder. I have sought advice and guidance from OT's, SLP's and educators. With their view point in mind, I have formulated the opinion that while his "verbal stim" can suck him into a world all his own, it also allows him to continue verbalizing. To continue practicing social skills and imaginative play, in circumstances that would otherwise leave him feeling left out of the conversation, fostering our belief that it is just a stim, and not his way of breaking into a conversation, in a time where words may otherwise fail him.

Allowing a child to go into a corner and spin the wheels of his Tonka, without engaging in the play, could lead to a dark and lonely world, I acknowledge that. Allowing the child to spin the wheels, and engaging with the child, creating conversation, asking "why", "how", facilitating conversation, may bring us into that world, and show that we respect the behavior, but also want to understand it, want to be a part of it. Taking these moments to build the relationship, and taking the time to ask questions to our child, shows that we respect their behavior, and respect them enough to question it, engage in it, and want to be a part of it.

There are many times, just like our conversation above, where I get C ready for the day, to go out, and while I warn him that we will be leaving, I fail to give him full details. With 3 kids, life is busy. Sometimes, it doesn't seem that there is enough time to fully explain where we are going, and why. With "Neuro-Typical" kids, this works. "We need to leave, now, and I will explain it in the car". Children with ASD, SPD, or other diagnoses, they need, and deserve more. My conversation above not only validates the need to constantly converse with our children, but that, despite their seemingly disinterest in our conversation, they are hearing what we are saying.

C constantly amazes me. Our initial diagnosis was hard. While he showed signs of one day being able to have conversational skills, no one could predict what those skills would evolve into. While we are still working on expressing needs and wants, slowly and surely we are making progress. Little reminders, like this, encourage us, as parents to continue pursuing more. To engage, to keep talking, even when it looks like he has lost interest. The words we say today, may be pulled from his "file cabinet" tomorrow, and help him express his needs in a way we never thought he could.

A Gluten Free Approach to Enchiladas

Gluten Free Enchiladas

My husband is a hunter. I am personally not a huge fan of venison, but it is hard to use that as an excuse, when he is dragging a 130-150 lb animal home, full of manly pride because he is able to provide meat for his family. 

I have been playing with recipes that cover the game(y) taste, enough for me to actually enjoy the meal. 
These enchiladas are almost creamy on the inside. The meat melts in your mouth, and I promise there is no residual game flavor left behind. Now, if your husband is not a hunter, ground beef or chicken would be awesome as well. 
With flavors that are authentic, and just enough kick to leave a small fire on your tongue, I truly think you will use this recipe again and again. The meat alone could be used for tacos and the best part... By using gluten free corn tortillas, this recipe is GLUTEN FREE, and using the full recipe will give you leftovers to freeze and have again for an easy dinner.
The Enchilada Sauce is really what made the taste so good, so here it goes. 

 

Ingredients:

3 lbs of ground meat (we used venison, but you could do chicken or beef)
1 tsp ancho chili powder (more will make the sauce spicier, and you could add a dash of Cayenne for even more heat)
1 12 oz can tomato paste
1/4 cup of oil (I used Canola because it was what I had on hand, but Corn is supposed to taste more authentic)
3 cloves of garlic minced
3 tsp salt
1/2 sweet onion (or 4-5 shallots, minced)
2 tsp dried oregeno
1/2 tsp ground cumin
1 tbs chili powder
pinch of pepper
1 full container of beef broth (reserve 1/2 for meat)
Flour or corn tortillas
2 cups Mexican Style shredded cheese (more or less depending on your taste)
Serve with sour cream and chopped green onions

Meat Mixture:

Start browning the meat in a Large Pot.
Saute onion and garlic in a separate Large Pot for about 5 mins, or until the onion is clear.
Meanwhile, combine the tomato paste, oil, 1/2 beef stock, and spices in a large mixing bowl, blending well and ensuring the oil is completely combined. Pour tomato mixture over the sauteed garlic and onion and simmer until thoroughly warmed.
After meat is browned, remove the grease, and pour the remaining beef stock over the meat. Simmer meat and stock for about 10 minutes.
Combine the tomato sauce with the meat and stock, leaving about 1 cup of the tomato sauce (now the enchilada sauce) in the bottom of the pot, reserved for dipping the tortillas. Allow to simmer for 30 mins (or longer).
Remove the meat mixture from the heat and allow to cool slightly.

Preparing the Enchiladas:

Prepare 2 baking dishes (I used 9in. rectangular glass cake pans) with cooking spray or butter.
Preheat the oven to 400 F.
I used the burrito size flour tortillas and the 3 pounds of meat filled 10 tortillas.
Place a single tortilla in the reserved tomato sauce, just enough to coat and soften it. Place the tortilla on a flat surface and place a single line of cheese down the center. Top the cheese with a serving of the meat mixture (I was generous with the serving size because I used the larger tortillas), and then fold the top and bottom over the meat mixture and roll, to create the enchilada. Place seam side down in the prepared baking dish and repeat this process, using all of the tortillas, and meat mixture.
Once the enchiladas are all in the baking dish, cover them with the remaining (reserved) enchilada (tomato) sauce. Top with cheese and bake in the preheated oven until the cheese on top is thoroughly melted. Serve with sour cream and chopped green onions, and enjoy!

A Time for Thanks

The holidays are quickly approaching. This is truly my favorite time of the year, and Thanksgiving is by far my most favorite holiday. It is a time when friends and family come together to celebrate each other, to break bread with one another, and is focused on being thankful for all we have. 

Again, I feel compelled to express my sincerest gratitude for all those who have supported Kinera Foundation over the course of the last 6 months. Because of each of you, we have reached more parents and caregivers than I hoped to reach in a year. We have allowed those who service our community an opportunity to speak about their services in a forum that directly reaches those they are trying to help. We have made friends, our children have made friends, and we are on the path to truly fulfilling our mission statement.

THANK YOU!!

With the approaching holidays, comes the stress of preparing our homes and families for the whirlwind of festivities. There are numerous tips and tricks to make this easier on our children who have sensory sensitivities, but below are some tips from a fellow mom, who has attended every meeting and has offered an immense amount of support for Kinera Foundation's future.  

6 Tips to help your child during the busy holiday season

1. Give your child a schedule of events for special activities, particularly on days with lots of transitions. Whether it’s a written schedule or one with pictures for younger kids, your child will feel calmer and safer knowing what is coming up. Discuss the schedule with your child. Sometimes just knowing what’s next can help children with special needs feel less anxiety.

2. Have a code word your child can use if he/she feels overwhelmed and needs a break. Let your child know if he/she uses the code word, you will respond right away. Again, giving children some control during activities that may be overstimulating for them will reduce anxiety and fear of the unknown.
3. Before you leave for holiday parties, parades, or other events, have a quick family meeting so your whole family knows how long you plan to stay and how you expect them to behave. This will benefit neuro-typical children as well, since any child can get overwhelmed with the excitement of the holidays. Continue to make your child’s sleep schedule a priority, even in the midst of so many special events.
4. Children with significant sensory-sensitivities may require a little extra planning to enjoy holiday events. For example, you may need to bring along ear plugs if you will be in a noisy environment or sensory fidgets if the child is expected to sit still. For sensitive kids who need to wear dress clothes for events, bring  along some soft clothes for them to change into as soon as possible. Be prepared by knowing your child’s specific limitations and how you will handle them if the need arises. Don’t wait for the meltdown to begin.
5. If your children have food sensitives or allergies that prevent them from eating holiday treats, plan ahead to offer alternatives like all-natural candy or a gluten-free treat from home. Children with neuro-behavioral disorders like ADHD or autism often already feel different, so be sure to include them in as many holiday festivities as possible.
6. If your child is easily over-stimulated, limit holiday decorations in your home. Too many twinkling lights combined with smells from the kitchen and other holidays distractions, while enjoyable to most, can be too much for children with autism, ADHD, or sensory disorders. Let special needs children help you decorate for the holidays so they are involved in the changes that take place in their comforting environment.

Great article about how Jewish families can celebrate Hanukkah with their children with special needs: http://www.abilitypath.org/areas-of-development/physical-development/sensory/articles/hanukkah1.html
 
A few more tips: http://specialchildren.about.com/od/inthecommunity/a/holiday.htm
 
http://www.friendshipcircle.org/blog/2012/12/12/13-holiday-survival-tips-for-your-child-with-special-needs/

These are great tips for what others can do for a parent of a child with special needs: http://specialchildren.about.com/od/inthecommunity/tp/Things-to-Do-for-a-Parent.htm
 
Gluten Free Holiday Cookie Recipes
http://noshon.it/recipes/13-gluten-free-holiday-cookie-recipes/

A Call to Action or a Slap in the Face?

Is there a point where we unknowingly sacrifice one's dignity for our own sanity?

Many of you may have been following the threads and posts regarding the blog written by Suzanne Wright regarding the  "call to action", demanding a national response to make a plan for the estimated 3 million Americans that have Autism (birth to adult). If you have been following the threads, you also know that this was a direct result of the resignation of long time contributor to Autism Speaks, John Elder Robison.

I have taken a few days to read through the threads, have been cautious to not jump on one bandwagon, or the next before formulating my own opinion. And what I have realized, in waiting it out, and reading the posts and comments, is this... we all have an opinion. I have come to the conclusion that the root of both blog posts, in my opinion, are for me, truthful, heartfelt, and from a place of compassion. (Click the above names for the link to each post)

Suzanne Wright says, "These families are not living. They are existing. Breathing - yes. Eating - yes. Sleeping - maybe. Working - most definitely - 24/7."

Well here I am, in the flesh, and therefore I am living, but I see the metaphor. Am I living the life I envisioned? Well that depends upon the time-frame upon which I was asked "what do you envision for your future". 20 years ago, I knew I would be married, knew I would have a home, and a family. 15 years ago, I couldn't see past my nose, I was so wrapped up in myself and didn't know what the next day would hold. 10 years ago I was a single mom, hoping that I could recoup my previous dream of a husband, home and family. 5 years ago I envisioned a home with 3 energetic boys, growing up to be a lawyer, actor and baseball player. I envisioned 3 daughter in laws, plenty of grandchildren, and a retirement filled with travel and visiting all my grand-babies. Today, my future is full of unknowns, but I do know that I still have 3 loving and healthy boys, full of energy and potential. Beyond that, I know, from past experience, that my vision of the future will continue to change, as our lives change. I have no doubt, however, that I am living my life to the fullest potential.

I do understand the analogy, perhaps I am not living to my envisioned potential. Again, it is up to us to re-write our vision of our future. I can appreciate what she is trying to say. As parents, we fight, day in and day out for the things that many parents take for granted. And while we fight, those same parents, who take for granted the small things, seemingly judge how we parent. It is daunting, it is hard, it is tiring. I do forget to eat, I have lost sleep, I do worry endlessly about such miniscule things, that suddenly seem so large. It is hard to parent a child with Autism. It is hard to parent.

Mr. Robison based his resignation from Autism Speaks on his belief that while Autism Speaks has the perfect platform and fundraising ability to provide and advocate for those on the Spectrum, they lack the tenacity to "speak" on behalf of those with Autism. In addition, he states "we do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated." He feels the staffers at Autism Speaks need help "to understand how destructive its messages have been to the psyches of autistic people".

Again, I get it. I understand how we, as part of the "normal" population, portray those with Autism as a problem to be solved. I have many times said that I would choose C with his "quirks" over C as someone else. We walk a fine line, when we try to define our children, our loved ones who are affected by Autism. While we want to help them succeed, and function in a "normal" society, we don't want to lose the person they are, because of the condition they have been diagnosed with. How do we balance, without teetering over the edge. 

I have written, many times, that when C was diagnosed, I felt as if I lost my child. I mourned my vision of who he was, felt that his future was re-written. I mourned the parent I hoped to be, and had to persevere.

Those feelings were my initial feelings, they didn't stop there. Together, and as a family, we are working on the chapters of the book. Writing it in hopes of creating a beautiful body of the story, that depicts a life of love and happiness. With every birth, a story unfolds, and changes as circumstances change. We are fluid, and need to bend and mold to each new chapter. We need to learn from our previous chapters and use those lessons to create the proceeding story. Our book is right in front of us, waiting for us to record all that takes place. Like every book, there are tragedies and triumphs, but it is how we outline our future chapters, based on our previous writing that makes our story unique and beautiful.

We should not feel as though we need to hide the hardships, because that is what makes our story come to life... However, we do need to be open and understanding of other stories, chapters, that take place around us, unfold before us, as they too have a vital role and can intertwine with how our story continues.

Being real and true to what you feel is important in family communication, but what is more important is explaining those feelings to your loved ones, ensuring they understand the place you were in, and the lessons learned from being in that place and experiencing those emotions. 

While I understand why Mr. Robison feels resentment towards Mrs. Wright's post, I can't help but to relate to what she says. There are days where just being, in this place, in my life, is hard. It is a challenge to manage the day to day. It is a struggle to be patient, to understand the stim, to respect C's desire to do something other than what is on my agenda. I also know that this is a daily struggle for every parent. Do we make it harder on ourselves because we have a diagnosis?

Every day I remind my boys that they have a choice to make... They can choose to make it a great day, or choose to have a bad day. We control how we manipulate our feelings, however I believe we can't control how we feel in a given moment. We can choose to use our feelings to our benefit or our detriment.

At times it is hard to acknowledge how we feel and then take those feelings and make them positive, but with work, it can be done.

I can understand why some may feel that airing a parent's negative feelings on a social media site, seems incomprehensible, but I get it. It makes those feelings real, enables others to express sympathy and empathy. I also believe that when you use social media as an outlet for your feelings, you need to be aware and ready to answer the questions and backlash that will certainly come with your post.

As we continue to advocate for those with "different abilities" we also need to embrace the hardship for all affected by it. We are all being graded on a massive curve, and need to remember that our personal experience, belief, and way we handle our experiences are different from others. Just as those with Autism are on a spectrum and all require different levels of care and treatment, we as humans are on a broader spectrum, and too are in need of different levels of care and treatment. If we are asking the normal population to embrace and understand the Autism Spectrum, shouldn't we be advocating the same for ourselves?

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.