Consistently Inconsistent

Big Ideas

Everyone has a purpose.

I am resolved to change my life and my child’s life through effective parenting practices. I pray and praise God for His help in turning our beautiful mess into His glory. The older Kody gets the more I realize my parenting practices need an adjustment. He is just a few short years away from graduating high school and we are looking at long term goals that will help him transition into society. He talks increasingly about living in an apartment and about what kind of job he wants to have. This is new for us. Until this last year, Kody was content to live with me forever (and I was content to let him). I am not surprised that he wants his own life, but I am concerned that I have not equipped him with enough life skills to accomplish this goal. Now that he is in high school and we are talking transition plans, college, and job skills, I am looking at Kody in a different light. I am finding strength and faith to help prepare him for his life apart from me. As I change our strategies to better suit his needs, I am met with a lot of defiance. This is not new behavior.
I have taught Kody how to do chores one task at a time since he was four years old. The first chore I gave him was to wipe the table and chairs. It was hand over hand while he threw a fit as I stood over him until he finished which could take thirty minutes or more sometimes. It was not something we did everyday but that was his chore when I included the kids in the housework. Now at fourteen, Kody can do just about every basic chore there is including mowing the lawn. Each chore has taken months and sometimes years for him to learn to do adequately and I still must stand by, check his work, and push him to stay on it until he is finished, but I am glad we do it. He has fought me 99% of the time and complained 100%. There have been hundreds of times I gave in and did it myself or gave him a chore that was easier because I was so worn down, but we would always try again the next time.
Teaching Kody how to do chores has been a plus but it has not changed the fact that he still must be told to do the chores. He still must be reminded to put his dishes up and clean up after himself. It is still a battle no matter what when it comes to doing anything he thinks is boring or too hard. I realize that this is typical teenage behavior. There are four teens in my household now and when I mention chores, everyone tries to run. The difference is that Kody not only resists my authority at home, but he resists my authority in public too. Not only mine but his teachers and other authority figures in his life. It is difficult to think about the trouble he causes for himself when I am not there to direct him. It is hard to trust that people will deal with him in love because I know the challenge he can present and how quickly he can take a person from kind to frustrated. This has been our life. I feel like I am constantly protecting him from the world and the world from him. It is hard to convince people that do not understand this part of his disability that it is a disability. I have a hard time understanding it myself.
Recently Kody’s pediatrician diagnosed him with Oppositional Defiant Disorder, or ODD. Though I did not know a lot about it, I knew enough to agree. I have just started to research this subject for myself. So far, I have learned that ineffective parenting practices contribute to the issue. It is going to start with me at home with him. Sometimes as parents it is hard to admit there are flaws in our child-rearing strategies but what I have been doing is not working the way I hoped it would. He is suffering, I am suffering, and his teachers and friends are suffering. There are behaviors that we are trying desperately to train that are not changing. Some are worsening. I cannot bear to watch it get worse for him.
Even with Kody’s disability, he is very high functioning. We have a lot to work with because he can understand ideas and reason well. Academically he is progressing at his level of capability. Socially and behaviorally he is challenged. Just like with his chores, Kody challenges conformity in all forms. What this looks like for him is heartbreaking in a world where he just wants to be accepted and respected just the way he is. Unfortunately, in society that is like trying to fit the square peg into the round hole. Kody can be such a gentleman when he wants to be, and he has wonderful manners when he is in the right frame of mind. When he is not, however, he can overstep people’s boundaries, their personal space, offend them, and irritate them.
I usually function from a place of stress and anxiety when we are in public together. At home it is easier because it is our world here. As I watch him, I wonder why we are having these issues? I rack my brain DAILY about what I can do to get through to him to help him understand that it is all about HIS choices. I ask myself WHY he chooses to behave with such defiance toward authority and rules repeatedly when he knows he is going to lose his privileges? He knows he will get a lecture and that I will be disappointed with his choices. Why isn’t that enough to change the behaviors?
Then I started looking at myself. There are a lot of issues with my parenting practices. If I am honest, there are many times that discipline is not consistent, but the threats are. Promises are made that I cannot keep. Stress is high, and sometimes tempers are short. More often cartoons and YouTubers are influencing him more than I am because of the amount of time he is spending on the internet. It is easier to put an iPad in his hands when I need him to be still than to train him with higher expectations in the situation. It is hard to parent Kody in situations that require my attention because without something to distract him and keep him busy, he can take all my attention. I have lacked consistency with upholding structure and have been soft on the rules I set. Consequences are dependent on how tired and emotional I am most of the time instead of consistent and concrete. Of course, there are issues with his diet as well. I fretted about his eating habits when he was a toddler and because food has always been an issue for me, I filtered his needs through my own. That means I considered it more important to feed him things he liked than to trust the process and continue offering healthier options and portions until he accepted that to be the way it is. Now, food is a huge issue and because he is older there is a stronger resistance to change.
As I continue to analyze my parenting skills, I can see the hardship I have caused us. Kody’s kindergarten teacher once told me that consistency was going to be my most valuable tool with him. She was right. The more I practice consistency in expectations, discipline, food choices, exercise, and other important areas of our life, the better his behavior is and (most importantly) the better he feels about life. I have been consistent in the wrong things and we have developed bad habits that may have seemed easier to do in the moment but have cost us years of bad results. I love him too much to continue down that destructive path. It is difficult to change these things but even more difficult to stay the same.
Kody has set a goal for himself. He wants to be independent and have a life all his own. I will do whatever I can to help him realize that dream. That means training his professional and social skills, breaking bad habits, teaching him self-control and self-discipline, and the skills to manage his health, his finances, and other responsible adult behaviors. All the things I have been doing since he was born but with better parenting practices and being more intentional. I know he will be successful. He is already an amazing young man with so much to offer even on his most difficult days.
In closing, I want to say thank you for taking the time to read my blog. If you found it interesting or helpful, please take the time to like, follow, and share it. It is my goal to share insight, offer understanding, and bring people together over the challenges and victories Kody and I face every day.

Advertisements

Dirty Dishes are the Devil


Everyday is a battle. We fight the good fight. We may fall but we never ever give up. I look back at mistakes I have made with parenting my child with a disability and I have no choice but to lay it at the feet of Jesus. He loves this boy more than anyone ever could and wants the best for him. I get tired mentally, spiritually, emotionally, and physically and I fall short constantly. It is so easy to give in rather than let my yes be yes and my no be no. He can be relentless when it comes to something he wants or something he does not want to do. His power is limited in this world and that bothers him. There are things he believes he should be able to do and say that are just not so. The concept of authority is fuzzy. He is always paying attention to what is going on and what is being said around him. That means he will surely call you out on something you have done that HE is not allowed to do or say. It does not matter who you are, how old you are, or your position in his life. He will hold you accountable or he will use it as an excuse for his own behavior. I find this to be one of the most difficult things to help him process and it is because it is not supposed to make sense. Modeling the wrong behavior, whether it is in word or deed, IS wrong. Expecting any child to understand “do as I say, not as I do” is absurd. For Kody it is mind blowing. He does not accept that it is okay for you to be sarcastic and hateful with him and then punish him when he gives it right back to you. I love that about him. He convicts me daily. I have fought being a lazy parent and only doing what I was willing to do just as hard as he has fought making good behavior choices all his life. God has told me what I need to be doing for him.

Things like helping him pursue his gifts and talents and having a healthy and active social and physically fit lifestyle. He has also told me what to stop allowing for him. Such as abnormal amounts of screen time and a poor diet along with poor eating habits. I have been slow to obey His directions but I am catching up. The hardest part is realizing how much better or easier his life would be, and in turn mine, had I followed the Lord’s direction for us as He lead me to in the first place.

Leaning unto my own understanding, my own weaknesses, my own anything, instead of pressing into the One who understands Kody and me has cost both of us unnecessary trials and tribulation. I am learning to get over my flesh and work. Do not misunderstand. I have worked with Kody, for Kody, against Kody, and alongside Kody all of his life, everyday with the best intentions and hopes for him. I have used therapies, counselors, medications, and all sorts of helpful resources to help Kody get to where he is today. He has worked the hardest to get this far. I have seen prayers answered on his behalf and I continue to pray greater prayers and believe for greater things for him. What I am talking about are the areas in my life I have not used self discipline, consistency, and self control. Those places that have hurt both of us the most. When you have a child that can not afford for you to struggle in these areas, it is convicting. We all have our struggles but the Lord has promised that “No temptation has overtaken you that is not common to man. God is faithful, and he will not let you be tempted beyond your ability, but with the temptation he will also provide the way of escape, that you may be able to endure it. I Cor. 10:13”. That means that I have more power than I realize to overcome the temptation to give in to my child out of fatigue, frustration, guilt or any other excuse that the devil tries to hit me with. This includes (for us) eating habits, exercise habits, screen time, chores, respectful behavior, obedience, and any other good thing that he fights me on. It includes my own behaviors. We do not have to be victims of our flesh.

Acting on this rich truth, I have started establishing habits that have always been very hard for me. Logically I am aware that these are not hard things to do but mentally and physically they are huge obstacles that I have not been able to conquer. Though house work gets done, it has been a burden and an oppressive ordeal to do daily for a household of seven. I am not even talking about the entire house, just the downstairs and the laundry. I do not ever feel ready for company because there are ALWAYS dishes, clothes, and clutter. It sounds like a simple enough task to keep under control but for some people that is overwhelming in ways that cripple the soul. When you are tired all of the time and your plate is full all of the time, then dirty dishes can seem like the devil trying to crush your spirit. So, I decided to make that a habit. I have been praying for help to take care of my family and this home that God has so generously restored to me and He has been so very faithful in answering that prayer. Now, every morning I clean my kitchen, do my dishes, and start the laundry as unto the Lord.

Another area that has seemed impossible for me to overcome has been exercise. I never liked it but I know how important it is. I have been praying about taking care of this body God has blessed me with and to help Kody do the same. He wants to be in shape but it is hard to overcome our bad habits that we enjoy so much. They bring us temporary comfort and that seems important when you feel stressed all of the time. It is no way to live though. We end up staying miserable. So, I joined a gym. I work out most mornings after I drop the kids off at school and I take Kody in the evenings as often as possible. We are making this a regular part of our life for the first time EVER. It feels wonderful. I love watching him enjoy taking care of himself. I worried about how he was going to do with the complicated machines and other people around him that would be working out in their own space. He figured the equipment out quicker than I did. As for the people, they are encouraged by his efforts. I see it on their faces. On one trip, a large muscular gentleman watched us struggle as we were figuring out how to use a piece of weight lifting equipment correctly. I was concerned we were bothering him because we were next to him. He stopped what he was doing and showed Kody how to use the equipment properly and what to do with his arms as he lifted the weights. It touched my heart and encouraged Kody incredibly. If people only realized how much power is behind a kind gesture, we could change the world. Finally, I have resolved to quit procrastinating with my writing. I started a book that Kody is helping me write and I have asked a very talented young lady to illustrate it. We have only just begun but I am so thrilled to have this project to work on together. That also means more blogging on a regular basis.

The temptation to give up or give in when things are really hard and I am tired and overwhelmed will still be there but I am gaining in momentum to permanently change that for both of us. I can do all things through Christ who strengthens me, right?! I hope that you find encouragement in my stories. They certainly encourage me as I write every precious word. My life is not perfect. I do not claim it to be so. What I offer is a glimpse into our struggles, victories, strategies, and most of all the hope that is my Jesus working out the kinks in our life. Do not ever give up because there is always more to be revealed just up ahead.

If it looks like a duck…

There is an old saying, “If it looks like a duck, swims like a duck, and quacks like a duck, then it probably is a duck”. This is not always the case. Sometimes looks can be deceiving. In this case, the duck would be treated like a duck and expected to act just like any other duck. On the other hand, some ducks are not all they are quacked up to be. If that is the case, how do we know, what are the expectations, and how do we respond?

The duck analogy is one way I try to help people understand Kody’s disability. Sometimes disabilities are obvious which may help people with acceptance. Other times disabilities are shrouded by functional abilities that may just be awkward or difficult, abnormal social skills, or lower IQ’s, but are not so obvious to the naked eye. At this point, the duck analogy becomes a problem for the person with the disability. While they look like everyone else, are able to move like everyone else, and even sound like everyone else, they are operating from a completely different place. This requires a whole different level of understanding.

In Kody’s case, it is hard to tell that he has a disability at first because he does not look like he has one. His physical appearance mimics that of everyone else for the most part. There are no physical boundaries. Kody can walk, run, write, and gesture just like anyone else. He is verbal and communicative utilizing a large vocabulary to express himself so that he sounds like everyone else. Still, he is not quite a duck like everyone else. This is revealed in the way he sees the world around him, how he processes this information and what he does with it and it is shaped by his personality.

Kody is a fun loving kind of guy. He wants everyone to be happy but is most concerned with his own happiness. To him, his needs come first and are most important. The name of the game is instant gratification. He believes that if it is funny to him or if it is something that he likes then everyone else loves it too. His sense of humor is not everyone’s cup of tea but he does not know that. He is not the most reasonable person and once he decides how he feels about something or someone it is very difficult to change it. Now, this may sound like I have just described every teen ever but there is a difference. His thoughts and behaviors are extreme versions of all of these things.

To Kody, every moment of every day should be fun. He should not have to work at anything which means that work takes extreme effort for him as well as the delegator. Whether it is a chore or school work, 90% of the time it is a showdown or at the very least you have to stand over him until he finishes it. We utilize reward systems, if/ then scenarios, chore charts, behavior reports, behavior goals, and discuss responsibility often (like daily) to train this part of his thinking. He may or may not ever accept that work is good and necessary but it helps him understand that it is part of life and the only way to get things you want.

When it comes to his needs, they must be met before he can move on to anything else because it becomes an obsession. This is part of the mentality for instant gratification which means that he does not have a lot of patience. There is a lot of frustration that comes with this mindset. He confuses his wants for his needs. You become an obstacle between him and what he wants which means war. This child has stamina when it comes to stand offs. He is relentless and will try to whittle you down until you are a shell of a person at times. Does it work? Yep. I am only human. Does that help him? Nope. It infuses the behavior. For the most part I have grown stronger and more immune to his battle strategies but more often than I care to admit I cave from mental, emotional, and physical exhaustion. I know there are a lot of parents that can relate.

Teaching him patience and the difference between a need and a desire has been difficult but I have seen him grow in this capacity and that has been rewarding for us both. The victories fuel me to continue pushing him to grow in these areas. It makes him more approachable and socially acceptable which is important especially down the road when he begins working and becoming more independent.

Kody’s sense of humor can be cute, clever, and funny, but it can also be embarrassing for others, immature, and sometimes rude. Unfortunately he misinterprets negative responses to his humor for acceptance. Any attention is viewed as approval. He is unable to read social cues accurately which can be hurtful or sometimes in the wrong crowd dangerous. There is no time like the present when it comes to putting on a show either. In other words, it does not matter whether it is in class, during church, a serious moment in private, or in public, he is on the moment he feels the urge to perform. Controlling when and what comes out of his mouth whether it is for fun or to express his discord can be difficult too. All of this works together to create a challenge in his behavior. He does filter his thoughts somewhat but more often than not he says what he thinks or states the obvious whether it is to be funny or honest.

My best tactic here is to explain how others receive him and to have him describe their reactions. By making him answer questions about whether his behavior was appropriate, or his timing was acceptable, or what other people did in response to his behavior, helps him figure it out for himself and it sticks better than when I just tell him what went wrong.  My goal now is to train his social skills without losing who he is. I have seen a desire these last few months that I have never picked up on in him. It is his own desire to fit in and be accepted.

Kody is a duck just like you and I, and even though his feathers may be subtly different, he does not always sound like other ducks, and he does not always act like other ducks. Regardless he belongs with other ducks (as all people with disabilities) in the same pond in the same world. Changing his feathers to match every one else is never going to happen but teaching him how to swim next to the other ducks is possible. Educating others about different kinds of disabilities and encouraging acceptance can be life changing for these guys and gals.

There is room enough for all kinds of ducks in this big world. God made sure of it. I offer this perspective for your consideration. We all need patience, love, joy, and acceptance from one another. Do not be afraid to love someone who is different from you. Be willing to be uncomfortable and awkward embracing uniqueness. I hope this makes a difference and sheds a little light for all ducks everywhere. God bless and thanks for reading.

 

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.”

1658300_10203950336816347_7829671024649080937_o

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

14900565_10209339507662250_8868642858328162014_n

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

untitled

Living large and in charge with Mario.

18301271_10211109739916950_5955635949206217153_n

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

 

 

Special People

Camp Blessing 2012                Camp Blessing 2013                 The Elder Family

Image may contain: 2 people  Image may contain: 5 people  Image may contain: 6 people, people smiling, people sitting, shoes, tree and outdoor

Angelia Griffin (left) – Challenge Air 2017

Image may contain: 3 people, people smiling, people standing   Image may contain: 1 person   Image may contain: 2 people, people smiling, people standing and outdoor   Image may contain: 6 people, people smiling, people standing, shoes and outdoor

 

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.

Special Needs

I have had countless conversations with other moms and dads about the struggles and joys of raising kids. Families that include a child with special needs, whether physical, mental, or emotional, face unusual challenges and have a unique strength that can be hard to wrap your mind around. We even look at each other and wonder how does the other one do it? Disabilities are so different for each person and their families.

In our family, my youngest son, Kody, was diagnosed around the age of three as having an intellectual disability, ADHD, and a speech delay. It was an emotional and difficult time for his father and I. Kody’s disability did not present itself in obvious ways. It was the little things like taking longer to crawl and walk than normal, constantly moving or trying to get away from me in public, not playing with other kids, he was impulsive, screaming at the top of his lungs in restaurants or other public places but not crying, and horrible tantrums. By age three, he had a vocabulary of less than ten words. The rest of it was literally his own language and you could not understand a word of it. It was frustrating but I never imagined it was due to a disability. Honestly, I thought he was just a hyper little boy challenging authority and that any delay was due to the fact that he had a house full of people doing everything for him because he was the baby of the family. The concerns were there but I was not worried.

I decided to ask our pediatrician a couple of questions about some of Kody’s peculiar behaviors and delays. He suggested that we have him tested. My mother is a special education teacher and after I talked to her about the pediatrician’s recommendation and the concerns I had, she suggested going through the school district for testing. We did not have insurance at the time and this was a practical starting point for us. Sure enough, he qualified for an early intervention program through our school district which was the Preschool Program for Children with Disabilities (PPCD). Can I just stop for a moment to give a huge shout out to those in the mission field of special education? Thank you for all that you do. Yours is truly a labor of love.

I can remember feeling like someone had just taken a blowtorch to my son’s future and I was terrified. I was angry and sad for him and for us. I had a million questions. How do you parent a child with disabilities? What are the rules? Am I doing everything I am supposed to do for him? Do I discipline him the same way as before? Does he need therapy? Will he get better? Will he get worse? What am I supposed to do for him, Lord? It was overwhelming and I did not want it to be true. I was not the only one. It was a sensitive issue between his father and I. Like I said before, Kody’s disability was not obvious. It was subtle and easy to excuse as defiant behaviors or developmental delays on which he would eventually be able to catch up. His father felt that the diagnosis was premature and would label him for the rest of his life; harming his future and closing doors to opportunities. I had the opposite state of mind. I felt that if we started dealing with the facts now, we could give him every chance to develop his full potential. Looking back, we were both right and we both just wanted what was best for him.

Unfortunately, all too often families are ripped apart because of the strain of having a child with special needs. I hope that if you are a parent or guardian of a child with special needs, that you do not forget to take care of yourself. My husband and I did not divorce because of Kody, but we were not always on the same page and it did add stress to our relationship. I encourage couples to seek wise counsel and support for your marriage before considering divorce. Trust the Lord with your family. He knew what He was doing when He blessed you with that child.

I know how blessed I am to have my son. Every day is a challenge but it is also a precious gift. We teach each other how to be better human beings. His future will be different than his brothers and sister but it will be just as bright. We are doing everything we can to make sure of that. He has gifts and talents that have a purpose and will serve him well. Though I still worry about what it will look like for him as a grown man, I know that the Lord has him in the palm of His mighty hand and is already working out the details of Kody’s life.

For the families of all children with special needs, God grant us:

Strength to carry their burdens.

Patience to care for their health and wellbeing every minute of every day.

Wisdom to understand their needs and the resources to meet those needs.

Love like Yours to love them right where they are at in good times and in hard times.

Big shoulders to catch their tears when they are let down in this world.

Courage to fight for their rights and give them a place in society.

Enough energy to care for them, our family, and ourselves.

Inspiration to make the most of our time together.

And fill our lives with peace and joy for the journey ahead.

~ Amen

If Nothing Changes, Nothing Changes

 

“If you could kick the person in the pants responsible for most of your trouble, you wouldn’t sit for a month.”  ~ Theodore Roosevelt

 

I have had to learn many lessons in my life the hard way. As I get older I grow more and more weary of the trouble I create for myself. I make better choices these days and I praise God for the woman he has allowed me to become despite myself. When you are a parent, you do not want to see your children making the same mistakes you did or have to witness them learning life lessons the hard way. However, I cannot be with my kids for every decision they make and I know what stubborn cloth they were cut from. So, what are my options as a parent? What can I do to ensure their safety and success in life? Well, first of all I can take a dose of reality and let go of the magical thinking that says I have any control over their indefinite safety and success in life. I am setting myself up for a slap in the face if I think I can. It is unrealistic to think that our kids will escape this life unscathed, never face tragedy, financial hardship, relationship issues, health problems, or worse. Next, I recognize that prayer is my biggest weapon on their behalf. No matter what God’s answer, he loves my kids more than I am humanly capable and not only knows what is best for them but wants what is best for them. Besides prayer, I assess my own witness in their lives. What lessons am I teaching them?

 

One of the hardest things I have had to learn is accountability. In my opinion it is one of the most important lessons in life. By the way, I am not concerned with perfection just progress. Without accountability the consequences of the bad decisions we make in our life are always someone else’s fault. It is a victim mentality and it is dangerous. If I do not teach my children accountability, then the world will.

 

One of my favorite sayings is: “The definition of insanity is doing the same thing over and over and expecting different results.” I personally pair that with accountability. If we have not been taught or have refused to learn how to take responsibility for our choices, we can become stuck in a miserable place in life, never accepting that we can change.

 

Accountability has a bad reputation these days. I think false pride, entitlement, and narcissism have found their way into the water system. It has a weak connotation when we filter it through false pride. Accountability takes humility and a willingness to humble ourselves which we usually perceive as a weakness. Ironically, humility takes more strength and courage than pride.

 

One of my children recently became unglued when I confronted him with accountability. I was instantly met with a defensive stance. This rattles my cage to the core. I recognize the posture of this place in his heart. It is the same as mine when I face my own giants at times. When accountability becomes a teachable moment with my son, I brace myself mentally and emotionally because I know it is going to be an intense discussion. I know that he knows the truth of his matters, but before he owns the choices he has made that got him into his predicament we have to do combat.

 

The inspiration for this post is a recent incident over grades and upcoming finals. The emotionally charged conversation was about low grades in two of his classes. Most of his reasoning was sound and legitimate, BUT he was not owning his part in the situation. What it boiled down to was that the effort he needed to put in was greater than the effort he was willing to put in and he did not want to face himself. He was adamant that it was not going to be his fault if he failed these classes. As we whittled away at the excuses, he reluctantly accepted that he had not made these classes a priority and given either of them the attention they needed. That is a tough pill to swallow when you are facing unpleasant consequences because of the choices you have made. I know because I take the same medicine all too often. It is hard to be honest with ourselves but even harder when we are not and it is devastating to watch our children believe such a lie that leads to their destruction.

 

This may be a lesson he has to learn the hard way. We will find out after finals. One thing is for sure, he knows that I love him and that I believe in him. He knows that accountability is a strength; not a weakness and we both know that he is capable of great things.

 

It Is What It Is

 

I am sitting at my computer this morning wondering how I should introduce my son, Kody. Do I start off defining him by his disability? Or open up with a cute anecdote or a story about one of his many challenges? Should I begin this dialogue discussing my own trials with Kody and how our family deals with his disability? I feel confident that at some point all of these perspectives will be addressed as my story grows in this blog. There are so many facets to having a child with special needs. It is life consuming. Everything you do or plan is pretty much filtered through this situation first. For instance, a simple task like going to church becomes an issue of strategy. What moods are we dealing with this morning? How disruptive are we going to be? Where can we sit that will give us room to wiggle and whisper the inevitable “Shhhhhhhh’s” while trying not to disturb other church goers? Are we on our way to a tantrum? Do I really want to take the electronics away as a discipline in this situation because then no one is going to get to hear the sermon?! What kind of chaotic mess am I going to look like as I try to manage his behaviors? These are just a few of the persistent questions I ask myself just for the two hours we are attending service.

 

I anticipate stress on some level everywhere and in everything we do. It is hectic and hard. The pressure never subsides completely; you never really relax. As a matter of fact, I just got off of the phone with him. His teacher contacted me and told me that he is having a rough morning. I use a few different strategies to address situations like this. I asked him what was wrong and he presented his case. I offered a different perspective to no avail (typical response) … he was determined that the world was against him at this point. So, we move on to the nitty gritty and discuss consequences for the choices he is making. I walk him through what will happen if he continues to make these negative choices (giving him control and accountability) which means he loses his electronic privileges, television time, will have to write sentences, and could end up with extra chores depending on how far he takes his behavior. With my gut clinched, I hang up emotionally and mentally exhausted. Even as I write this I am wondering if I got through to him and hoping that he has chosen to turn his day around.

 

This is how we live each day. Moment by moment, inch by inch, and mile by loving mile. He is a beautiful mess and so is his mother. Bless his heart, he did not get to choose his parents and do not get me wrong, I would not trade this child for anything. Yes, life is tough most of the time and there is a lot of stress that goes with the territory, BUT there is also joy, love, pride, and satisfaction. He has given me such purpose and continues to sharpen me (I need a lot of sharpening) and shape my character (and others lucky enough to know him) as God uses him for such a beautiful cause. I have never regretted having a child with a disability. It is what it is.

 

So, I want to help people understand the heart of a parent that has a child with a disability. It may sound like I am complaining when you read about our experiences but that could not be further from the truth. I share our journey with you because I want you to understand us and love us where we are at. Do not be offended if we turn down invitations at the last minute or if we do not stay long at social gatherings. We pick and choose our battles. Please do not judge us for not being socially appropriate or when we show up mismatched and with bed head. It is going to happen more often than I want it to but that is our life. Most of the time we are just happy we made it to our destination in the first place. Do not take it personally if I leave a conversation abruptly or if I look distracted when we are talking. Excuse my frantic facial gestures and over exaggerated expressions as I walk in the door. I am trying to have a sense of humor about my life and laughing at my situation is the spoon full of sugar that helps me deal with it. It is not that we need your sympathy. We need your compassion, your assistance, your acceptance, your understanding, and your Christ centered love. To those of you that do just that … thank you.

 

John 9:1-3 
As he passed by, he saw a man blind from birth. And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.”

Flying High

Courageous … he was terrified but refused to get down. He finally told the attendant to push him off the platform … determined to conquer his fear.

The Rut

How do you break a rotten rut in parenting? Why are bad habits so easy to fall into and good habits so hard to form or keep? I have “told” my kids time and time again, “If you will do it right from the beginning, it will be easier in the long run”, or “If you will do the hard thing now, you will make things easier on yourself down the road.” This is usually said in the context of chores, school work and studies or eating healthier… and I know better than anyone that I am actually talking to myself too. As the words rush through my pursed lips, I feel the guilty sensation like a rock hitting the bottom of my stomach. You know the old saying, “Do as I say, not as I do.”? Well, that principle is from the devil. I hear myself reason with them, trying to convince them with practical wisdom, but they are smart. Kids know when you are not on the up and up with them. If my actions are not aligning with my words… I mean they are not blind. I cannot expect my kids to watch what they eat if I am not working that same program. If I am asking them to clean up after themselves and I myself have left a trail everywhere I have been, then all I have done is confused them.

What about relationally? If I show disdain for a person who has inconvenienced me or grumbled as I go to help a friend, but then sit and encourage my children to treat others with the love of Christ and to always be ready to forgive… what can I expect from them? So, what do I do about this weak foundation I keep trying to build for them? Do I stop teaching them just because I’m not walking the line perfectly? Of course not. I grow with them. I do not stop requiring obedience or setting expectations for them but I apply them with grace and mercy just as my Father in heaven does for all of us. Yes, there are consequences and discipline for choices that they make when they miss the mark just as there are for all of God’s children. I see the consequences for my choices as a parent reflected back to me every day… good and bad. We have to have a reason to change. There has to be a revelation of our sin for us to recognize it for what it is.

So, how do we break a rotten rut of bad habits? Once I finally get sick and tired of being sick and tired and fed up with the miserable cycle we get caught in, I surrender. I raise my white flag and do a face plant at my Father’s precious feet. Then I own my mistakes and ask for forgiveness. I give Him praise and worship for loving me and then I ask for His help to rebuild what I have messed up. Now, the easier way is to hit my knees before I open my mouth to another living soul on a daily basis but that is something I am working on… with His help. I have yet to see the Lord leave me stranded. He picks me up, dusts me off, and I pick up where I left off but with a much better perspective and a new-found energy to be the example of what I expect from my own children. I visit this place often by the way. The battle is real and I am constantly asking for forgiveness and renewal but I NEVER give up. Perfection is only going to be found in heaven. Progress… that I can do.

My prayer usually goes something like this:

Dear God,

I am a broken human being. I will never be perfect as a parent. You have blessed me with these wonderful children to bring up in the way that they should go but I am having a hard time with that today. Please, show me where my parenting is weak and strengthen me there. Do not let my brokenness be their guidance. I want to bring you glory in my parenting by raising children that will bring you glory. Forgive me for my shortcomings and align my heart with Yours for these children as I raise them.

-Amen