Friday Food Experiment

Gluten Free Friday!

I have spent the last two years testing different recipes for Wheat Free/ Egg Free options for C. Though he isn't allergic to gluten, we have found that because gluten is derived from wheat, most gluten free products are wheat free.

Gluten free food can be expensive, especially because the grocery stores seem to mark up specialty products. So rather spend a small fortune on food that C can eat, I have decided to experiment with different flours and ingredients to make kid friendly food, that doesn't taste like paste.

Experiment # 1, chicken nuggets. There are several brands out there that sell gluten free, wheat free, egg free nuggets, however for a box of 10, they can cost as much as $6.50/ box. I can buy organic chicken tenders by the pound for less than that.

Typically egg is used as the binder for breaded foods, however I have found that buttermilk (or if you are casein free even olive oil) works great. If you allow the chicken to soak in seasoned buttermilk for an hour or more, you will have tender and well flavored tenders. I like to use cornmeal as the breading, however if you are sensitive to wheat or gluten, ensure that the package indicates that the cornmeal is comes from a "gluten free" processing center. Many times oat and corn are processed in machinery that also processes wheat. Arrowhead and Red Mill brands sell "Gluten Free" Cornmeal and Oat Flour.

Ingredients

1 pound organic chicken tenders (cut into nugget size or can be used as tenders)
3/4 cup of cornmeal (more or less depending on how thick you like the bread coating)
1 cup buttermilk
1/2 tsp salt
1/4 tsp black pepper
1/4 tsp paprika
1/4 tsp garlic powder

Mix salt, pepper, paprika, and garlic powder into buttermilk, whisking together until all ingredients are combined. Add chicken and allow to marinate for an hour or more, in the refrigerator. Place cornmeal on plate (for breading). Preheat oven to 375. (I use a baking stone to make the nuggets on, which gives the nuggets a crunchy consistency, like fried nuggets would have) Remove chicken from buttermilk mixture and toss in the cornmeal, applying the breading generously and evenly on the chicken. Place the chicken on the baking stone (or cookie sheet, which would need non-stick cooking spray or parchment lining) and bake for 20-25 minutes, or until the juices from the chicken run clear. Cook time will vary depending on your oven, the size of your nuggets or tenders, and the thickness of the chicken.

Eureka, gluten free nuggets, for a fraction of the cost of the store bought brands. Play with the seasoning, C likes things a bit spicy, which is why I add black pepper and garlic powder, but you could even just leave the nuggets plain and they will have a sweet, but slightly savory flavor.

Hopefully your little ones enjoy these nuggets as much as my guy does. I try to make large batches and freeze them in portion sizes to eliminate having to go through these steps each time C wants nuggets for lunch.

The Wanderer

In the past month, I have come across several news reports of search and rescue efforts for children with Autism. Some have had happy endings and others have been tragic. The latest story to cross my email is linked here search-on-for-missing-autistic-boy-in-bowie-co-tx.

We have had a few close calls in our family. Every time has been in the morning, while I have been getting ready for work. C has attempted to cross our main road twice, and has been found before he was able to. I cannot describe the fear, guilt and heartache that consumes me, each time, in the 60 seconds that he has been missing.

I know that it is easy to think that maybe I am not diligent, that I must be neglectful, but in the time that I turn to throw trash away and turn back, he can be gone. Out the door. Off our street. Those who know me know that I am protective, overbearing, and I know that I am far from neglectful, but in those seconds, I feel like the worst mom out there.

It is easy to place blame on the parents. Most are quick to assume that there are not enough safeguards in our home to keep our child safe and elopement free. One behaviorist suggested that we change all of the door knobs and locks to the tops of the doors, out of C's reach. It seems logical, but what if there were a fire, and my other children needed to escape. They can't pull a step stool out each time they need to leave the house. What about allowing C some freedom, some normalcy. Why can't he learn to open the doors as a neuro-typical child would?

I recently read a post from the National Autism Association's website nationalautismassociation.org, and it stated the following, "So, instead of asking why the parents took their eyes off their child – something all parents do when we sleep, shower, cook, go to the bathroom, comment on an article, read a blog, or make home repairs — the better question to ask is: how can we help children like Mikaela progress so that they understand ways to stay safe?" We, as parents, are being chastised for not being diligent, not watching over our children, allowing them to "escape". The word escape in essence means that we are holding our children hostage, the true definition "To break loose from confinement; get free". Our children learn and grow from experience, from the mere act of exploration. Where does one draw the line of allowing our children to explore and have freedom, and protecting them from their curiosity and their need to explore. This question does not just pertain to parents of children with Autism, but parent's in general. It is accepted among the neuro-typical community to allow children to fall, learn and get back up again, but as parents raising children with special needs, it appears that the same rules do not apply.

By no means am I saying that I will allow my child to wander off, and hope that he finds his way home, rather I am asking "How do I allow my child the freedom to explore, myself the sanity of a few minutes alone without fear of his elopement, all while keeping him safe"?

A few tips from Warrior Parents that I have heard are:
1. Introduce yourself to your neighbors. Give them a picture of your child and your phone number. Explain your child's diagnosis, and ask that if they see him/her without adult supervision to please contact you immediately.
2. Go to your local police and fire departments. Give them a picture of your child. Again, explain the diagnosis, and ask that they keep the picture on file, should you need to call on their services.
3. Purchase alarms for your doors and windows. They are sold at any electronic store and are available online. They range in price from $20 - $100, but will sound when any door or window they are attached to opens.
4. Educate your family and friends on the high instance of children with Autism wandering. Remind them that it can happen in a second.
5. Our family has an emergency plan that includes a family meeting at our mailbox, should we need to leave the house quickly. Ensure your family has an emergency escape plan, and a meeting place. We have created a plan so that every family member knows that if they are in C's vicinity to ensure that he too is able to escape.

This is a scary topic, but one that needs more attention. The reality is that 49% of children with Autism are prone to wandering (see above link reference). We as parents are typically blamed for the behavior, but very few of us have solid advice on how to prevent it, or even what to do should our child elope. Awareness, I believe is the first step to prevention.

For more information, visit www.awaare.org.

Instinct

A Mother's instinct is absolute, pure even. Somehow you just know when your child is stirring in the middle of the night, even before a sound comes out of the monitor. You know when your child is hurt, emotionally or physically before they even say a word. You have the amazing ability to distinguish one child's "mommy" voice from another.

C was born in the summer of 2008. It was completely uneventful. He was a scheduled C-section, because boy do our boys come out big. Unlike most birth stories, we just walked into the hospital and a few hours later we had a baby. No labor, no pushing, just joy.

C was a quiet baby. After 2 children who didn't sleep through the night (we still have issues with that), I was looking forward to a "good" baby. C even slept for 8 hours the second night in the hospital. He never cried, he just made an "ahhhhhhhh" sound, so softly you could barely hear him. Strange, I thought. All babies cry, don't they? But when I asked, I was advised to just be happy that I didn't have a screamer. And they were right, I had 2 other LOUD children, so having a quiet baby would be a nice change of pace.

Time went on, and C did everything at a later age than his brothers. Unlike our middle son, he had no interest in keeping up with the other kids. He was content to watch. He crawled at 9 months, walked at 16 months, and had a hand full of words by 2. When I confronted the doctors with my concerns, , they just ensured me that he was the product of "last baby syndrome". All of his milestones fell within the normal range. He was simply taking advantage of everyone doing everything for him.

We decided at 2 that it was time for baby boot camp. No more babying, this kid needed to talk, needed to get potty trained, needed to start engaging in activity with his brothers. For a full year we tried, unsuccessfully, and the longer we tried, the more "instinct" was whispering sweet nothings in my ear. "This child is not developing properly", "He should be talking by now", "Look at that 2 1/2 year old, he is having conversations, and can play games with the other kids".

I started to turn to friends with children, started to tell everyone I met that C was "special", slow, and that maybe there was something wrong. How should they have responded? "Your right, your kid has issues"? Of course not, they laughed, kidded with me, and assured me that each child develops at a different pace, and eventually he would catch up. All but one, a friend who was always honest. "Take him to the doctor, push for answers, if you think something is wrong, do something about it". She was right, but I was scared. I procrastinated. I wanted so desperately for someone to agree that C wasn't on the right developmental track, but was scared for what that would mean.

When I was in college, I worked at the YMCA. I will always, always remember my time there fondly. That one job taught me more about compassion, patience, and perseverance, than any other. While working there, we had 2 children enrolled in our after school program. We knew that they were developmentally behind,  but their parents' seemed to refuse our suggestion to have them evaluated for learning disabilities. Those poor children struggled to make friends, struggled to learn, struggled with what came naturally to other kids in their age group. If I ignored my instinct, would C become that child? Worse, would I become that parent?

I felt an overwhelming need to get answers, now. Little did I know that getting answers now would take months of testing, blood work, hearing evaluations, eye examinations, specialists, doctors... My poor child has anxiety just walking into the waiting room of a doctor's office now. Even when the appointment is not for him, he cries, runs to the door, and yells "good-bye, good-bye", in his sweet sing song voice. Who knew just how hard verifying a diagnosis would be, and if it is that hard to confirm what a doctor has already diagnosed, what are we in for next?

As parents we are our children's best advocate. I have been told this a million times by a million professionals. We can't live in fear of the unknown. The earlier a child is diagnosed, whether with Autism, ADHD, ED, ID, or any other syndrome, the better chance we have as parents to seek the appropriate therapies, treatments, plans that will help our children achieve their ultimate success. 

It is so hard to acknowledge imperfections in our children, whom in our eyes are perfect. With that said, seeking answers sooner rather than later, and having the courage to face your fears, will allow for more opportunities to better your child.

Bridges

 Our journey has been short. I certainly don't have all of the answers, but I do have resolve to ensure that everyone that comes in contact with our family, our foundation, a child with special needs, is made more aware of the need for compassion, understanding, patience, and love.

Together we can build bridges to bring our community together and stand behind these families so desperately seeking support and answers. 

"How", how do we band together? How do we instill compassion and  empathy in families that may not share our experiences, may not have this tough path to walk along? If we end judgement, end the negative feedback and comments, teach our children, instill in them, the Golden Rule, we can begin to embrace differences and see those differences as beautiful, not scary, not weird. It begins with us, as parents, as partners in a world that seems to embrace hate, crime, and gossip. It begins with us as positive role models, showing the children in our lives that it is okay to be a leader, okay to stand behind someone "different" and not shy away from understanding the person behind the need.

Finding the positive in every person, every situation allows us to step back and remember all that we have to be grateful for. I may not have all the money in the world, I may be faced with challenges everyday, but without these challenges, my heart would not be as full of love as is. 

Take a moment to bask in the sunshine, be grateful for what you have, don't dwell on what your life lacks, and above all, fill your heart with compassion. I promise taking ten seconds to find the "Glad" in a tough situation will bring you peace.

Our path may be twisted, may have many turns to choose from, but I know that if we continue to teach our children to embrace differences, not focus on them, to see someone's difference in a positive light, not negative, we will begin to lay the brickwork for our community bridge.

How it all started

 
 What is Kinera?
Kinera is a compound word, combining Kin - someone or something of the same or
similar kind, and Era - a date or an event forming the beginning of any distinctive period. Simply put, a group of friends and family lasting a lifetime.
Why do we need Kinera, why is it important to us?
I will never forget the day I took my son in for his 3 year -well visit, and left feeling as though I was bringing home a new child. In a time when I should have felt a sense of relief, I felt devastation. I wanted desperately to feel as though I had a path to follow, but with a complex diagnosis, you are many times left with many paths to choose from. I wanted someone to tell me what to do, for someone to talk to, to give me advice. I wanted a guide who had already experienced the shock and devastation of a diagnosis, to hold my hand and tell me what step to take next. I wanted someone to understand why I grieved a child that was still alive. It wasn’t that he had a fatal prognosis; it was that my vision of what his future held was suddenly stripped from me. I needed support, and the closest group was about an hour away. In traveling that far, I realized that the most I would gain was insight from another parent’s perspective. I started searching for people who have been through what we were going through. I wanted somebody to talk to about what others have done; somebody to bounce
ideas off of. There was no one in my area, available, to give me guidance for me, for my family unit. The programs I found in our area focused on my child. While that was needed, I knew that I had to heal myself before I could fully take care of my son. The Chesapeake Bay Region lacks a much needed  support group open to families of children with all needs. We know many of these families on a first name basis; have worked with them throughout various outlets. We have, and will continue to face  fears, triumphs, challenges and victories with them. Many of these families do not know where to go for extra help, or have the chance to interact and socialize with other parents who share similar needs, have encountered similar scenarios. They want someone with whom they can share strategies that work, or just vent to, someone who understands and wants to listen.
We don’t know what the future holds, and that’s a scary place. We want parents to feel safe saying that. We want parents to embrace Kinera, to know that we are here for the long haul. Regardless of the stage of diagnosis they are in, beginning, middle, or another beginning, regardless of their child’s age, Kinera Foundation will have a place – a refuge to lay feelings on the table, and know that we will do everything in our power to provide the support they so desperately desire. We don’t want to go for the “cure”. There will always be challenges we have to face.
Therefore, Kinera Foundation is born. We know the need on the Delmarva Peninsula. With our training and years working with individuals with autism and other special needs; with knowledge of IEP and school needs, Kinera will be beneficial to parents, and help children achieve their ultimate success. Every county provides different services, has access to different specialists. We want the information parents’ are given to be relevant to where they live. We want to be able to provide the same services, grant opportunities, and support that other counties have, to the Chesapeake Bay Region.