Socialize My Skills

Social skills are a necessity in life. No matter who you are, how you were raised, or what you believe, there is a general expectation of behavior and interpersonal communication that we have of one another. I have a different face for the public than I do for people I know and can be myself around and I can switch gears fairly easily. I respect people’s spaces, mind my manners, and can adjust to social cues when I feel like the situation has become awkward. Standing in line and waiting my turn without bumping into the people around me is easy. I can walk through my favorite store without having to touch everything and if I am shopping with someone else, I am patient while they shop even if it is for something I have no interest in. I can listen when it is time to listen, sit quietly when it is time to be quiet, and I can be still for long periods of time if I have to. Conversations are two sided and I am able to focus on what the person is saying as well as respond appropriately. When I was younger, these social skills were more difficult but as I matured my skills evolved more quickly. I am still awkward more often than I care to admit but I recognize it and I work on it. This ability is not so easy for my son Kody or many people with different disabilities that desire and require relationships.

Interpersonal communication opens or shuts doors to opportunities and relationships. People do not always give each other the benefit of the doubt. We pass judgment before we understand the situation especially if we are made to feel uncomfortable. If we are offended, we react with negative intentions and draw conclusions about a person’s character based on a moment of interaction that was less than pleasing. We do not consider why someone has acted this way, just that they have.

Social situations are stressors for my little family. Sometimes they are a nightmare. When Kody was a toddler, I can remember sitting in a restaurant with his three siblings and the look of sheer embarrassment on all of our faces as Kody created quite a disturbance by screaming out in short bursts for no apparent reason. This was common during this period of time for him. It did not deter me at that time from taking my family out to public places, but eventually it would. On this occasion, it drew the attention of a manager who made sure we had two servers and free ice cream to help keep him calm. It was a kindness that washed over me and a relief for Kody’s siblings who had no control over how he behaved in public. I will never forget it.

Kody grew out of the screaming stage after a couple of years as his speech developed but his social skills are still developing. It is incredibly hard to watch my son around kids his age. He wants to fit in but does not fully understand the reason for or accept social rules. Unfortunately that is a turn off for kids his age and most people in general. That includes those closest to him. Conversations with people are usually one sided and only about what he wants to discuss. His idea of funny is usually obnoxious to others. He is impulsive and can put people on the spot. If he has something on his mind he wants to say it right away even if that means interrupting a conversation. Though he is 14, his sense of humor rivals that of an eight-year-old boys where bodily functions are hilarious and annoying others tickles his funny bone. When he is mad or frustrated he wants to hit or kick things. He tends to protest the consequences of his behavioral choices by refusing to do anything at all, negative self talk, and the occasional meltdown where pent up hurt and anger come out at the top of his lungs with great rage and many tears. It is heartbreaking to watch and frustrating to deal with.

The other side of Kody is a young man full of courage, brave enough to take on the world full steam ahead. He is a great witness for Jesus Christ and will not hesitate to point his friends to Him as their Savior. Kody is sensitive to the needs of others and wants to protect the weak. His compassion for the less fortunate is deep and sincere. I believe if he had his way, we would personally house all of the homeless in Houston. His humor is not always obnoxious. His witty observations and fun facts leave me in stitches and he loves to perform for small captive audiences spontaneously. Movie theatres are a perfect example. From the moment we walk into the theatre and find our seats, Kody is performing for anyone who will give him their attention. He is the pre-movie entertainment. Whether it is a little dance or a complete mime routine, he loves to make people smile or laugh. Kody is creative. His escape is his imagination. He dresses up in costumes and fully takes on the persona of his favorite characters. Many a Star Wars space battle has been fought right on our front lawn with lightsaber in hand. He wants everyone to be happy and to have fun. It is the most important thing to him. Social skills are not at the top of his list.

It takes a lot of energy and a great deal of patience to get to know Kody. You have to be willing to be uncomfortable and love him where his abilities are right now. People with disabilities offer humanity an opportunity to show and grow in compassion, love, understanding, devotion, and courage. It will make you a better person. It will make you stronger. Your time and effort is appreciated by parents who desperately want for their family member to be loved and accepted and it is rewarded by your Father in Heaven who loved these special human beings even before they came into this world. Speaking for Kody, “Please socialize my skills.”

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As bold as the bat himself when he sports this get up.

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He created his own persona as king of the vampires with this costume.

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Living large and in charge with Mario.

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Feeling fancy in my grandmothers fur coat. It makes him feel royal.

 

 

Special People

Camp Blessing 2012                Camp Blessing 2013                 The Elder Family

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Angelia Griffin (left) – Challenge Air 2017

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I am always amazed when I meet people who have dedicated their life to a career in the field of special needs or that volunteer their time and resources to bless this population. It takes physical strength, courage, thick skin, the patience of Job, determination, acceptance and a tender heart to do this work. Each person with a disability is unique and so are their needs. What works for one person may cause another person with the same diagnosis to have a meltdown. There may be a need for incontinence care, help with eating or a feeding tube, suctioning a person’s airway so that they can breath, or other hygiene care. Some people have a disability that causes seizures which require the ability to act quickly and think clearly. Others may need constant attention to maintain their safety from themselves or others, from running away, or being destructive.

Of course not all disabilities are high maintenance and not all require so much attention but they do require kindness, understanding, commitment, and compassion. Whether the disability is physical or mental, whether it is intellectual or chemical, constant or cycles, permanent or temporary, this is a human being with a need and there are people that have been called to this mission field to make sure their needs are met.

Camp Blessing

Our family has had the honor and privilege of knowing two very special people, Glen and Laura Elder, who have dedicated their life to offering the opportunity for kids and adults with disabilities to experience camp. Camp Blessing in Brenham, Texas, is a place for our special population to come and be themselves with complete acceptance of who they are – just the way they are. It is four days and three nights of fun and Godly ministry. Each camper has their own buddy who stays with them for the entire duration of camp. That buddy has a counselor to help them and a cabin parent that is there for all of them. They are all volunteers.

My son, Kody, will be going next week. It is his fourth time attending Camp Blessing. His brother will be there as a volunteer. This is Michael’s third time to go. He has attended as a sibling during a sibling week and once as a barnstormer which is a position with a variety of duties for the younger volunteers. It is an incredible life changing experience for these volunteers. Michael cannot wait to go back! As for the campers, they are ministered to in a way that lifts them up and makes them feel special. It is all about them for those four days. Glen and Laura have created a beautiful ministry that touches the lives of the camper, changes the lives of the volunteers, and ministers to the families of these very special campers.

Challenge Air

Another ministry we have had the pleasure to experience is called Challenge Air. I was introduced to this amazing program by Angelia Griffen, a women who eats, sleeps, and breaths ministries of all kinds. Her husband, Kevin, is a pilot and together they help to coordinate Challenge Air in Conroe, Texas, once a year. This was our first year to be a part of Challenge Air and I am pleased to say that it will not be our last. Challenge Air is a unique program that allows people with special needs the opportunity to fly a plane. Their mission is to eliminate the belief that people with disabilities are limited, to raise their self-esteem and show them that they can do anything.

Mission accomplished! Kody is still talking about getting to fly a plane all by himself. Just like Camp Blessing, the volunteers make this experience all about the person receiving the service. From the moment we walked into the hanger the volunteers made Kody feel special. We were all made to feel special. He is looking forward to going back next year and so am I.

I am always overwhelmed by my emotions when attending these events. If you have volunteered your time and resources for either of these ministries, thank you. Kody is not the only one that is ministered to by your efforts. Though I do not carry the responsibility of raising Kody completely alone, he completely occupies my heart, just as all of my children do, to make sure they all know how special they are and that they have as many opportunities to explore who they are to Christ’s purpose as possible. Both of these ministries do an outstanding job in these capacities.

I encourage anyone with a loved one who qualifies for either of these programs to follow the links I am including at the end of this post and get involved. If you would like to get involved as a volunteer or would like to support either of these ministries financially or otherwise, you will find more information on the official website for each of these ministries.

For more information on Camp Blessing or Challenge Air please visit their websites and follow them on Facebook.

http://www.campblessing.org

http://www.challengeair.com

 

 

Let Me Explain

“Chromosomal Microarray Analysis revealed a copy number LOSS of chromosome band 15q13.2q13.3 of approximately 1.474 Mb in size. The deleted segment, which includes the CHRNA7 gene, has been associated with intellectual disability and seizures…”

This is the clinical result of Kody’s official diagnosis. A chromosome disorder that has been associated with intellectual disability, seizures, attention deficit hyperactivity disorder, difficulty with mood regulation, and impulse control. It has also been associated with hyperphagia, low muscle tone, speech delay, autism spectrum disorder, and oppositional defiant disorder. This is the explanation for why Kody has the challenges that he does.

As the mother of a child with such obstacles, I constantly find myself wanting to explain his behaviors. I wonder what people think of me as a parent and even more so what they must think of him as an individual. I believe that people are judging my parenting skills as they witness Kody being awkward, difficult, disrespectful, or disruptive. When they see him with his IPad, they must think it is irresponsible of me to allow him so much screen time. I am sure they wonder why I have not taught him social skills or why I allow such disorderly conduct.

My answer to anyone who does not know us or not taken the time to understand the full picture is, “Please excuse our beautiful mess, we are a work in progress and our progress is slower than the average person. But we are progressing.” We have come a long way, believe me. It is a situation that requires constant attention and therefore takes a lot of tools to negotiate or manage behaviors. I am as much a student of his condition as I am an expert. It is not that I am not teaching him these things, it is that he is still learning why, how, when, and where to apply them. So, it looks very messy to an audience.

There is always room for improvement as a parent. I used to ask God all of the time why He would choose me to be the mother of a child who needs strong structure and consistency, strict boundaries and someone with stamina for the daily battles. I have a hard time remembering what I did yesterday! It takes a lot of energy to deal with his responses to being told “no” or making him be responsible for his chores on a daily basis. Everything that takes any work on his part and is not centered around instant gratification is really hard for him. That does not mean he cannot do life on life’s terms, it just means that he takes longer to do it on his own.

In the mean time, if he is awake, we are in training. It means that I constantly question myself whether I am being too hard on him. Have I balanced negative responses to his behaviors with positive ones? What can we look for in his behaviors today that we can use to build him up? Am I being unfair to the other kids in the house? Are my expectations too high, or are they too low?

It is a complicated situation. I have taught Kody for years to “play out the tape.” In other words, think about what is going to happen if you make the choice to break a rule or choose a negative behavior. His teachers at school have also worked diligently on this same concept by using behavior charts and reward systems. He knows without a doubt that when he breaks a rule, there are consequences. When asked, he can also recognize the behavior that caused him a problem (most of the time). Currently his hindsight is better than his foresight. He has grown so much over the years and matured in so many of his behavior choices that I have faith in his ability to overcome most of, if not all of, the challenges he faces.

I would like to offer this perspective because I know a few parents who have a child with similar special needs. We cannot parent these children on an island. Like little bulls in a china shop living on raw emotions and overstimulated senses, they cry out for understanding and relationships like anyone else. Their wiring is different which affects the way they process the world around them. They are hardwired to see things their way and changing that is not easy. It can make it difficult to get to know them and uncomfortable to deal with them at times, but any effort you make will bless you both.

People who open their hearts to the experience are rewarded with a special relationship that offers opportunity for personal growth and a grand adventure. So, when you recognize this dynamic in a family or an individual, I encourage you to reach out and lift them up, offer your support, and love on them. They need you – we need you. I cannot tell you how much I appreciate all of the people in our lives who have done just that. Thank you from the bottom of our hearts for your prayers and your kindness!

Kody's choir attire

Handsome and debonair in his choir attire.