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

First Things First…

Hi, my name is Staci. I am 43, a college student working on a bachelor’s degree, single mother of three (one girl and two boys), grandmother to one granddaughter, care giver to my twin niece and nephew, student ministry hospitality team coordinator, homemaker,  friend, sister, daughter, and whatever else the Lord calls me for. I have started this blog for a few reasons. My number one goal is to minister to the parents of children with special needs and to bring more understanding to the public about this

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Some of the zoo crew and their shenanigans on St. Patrick’s Day at Galveston Beach.

population. It is a sweet burden to bear and one that offers far more benefits to those that care for a person with special needs than is comprehensible. A life where sometimes the challenges outweigh the victories. The victories are not always lasting and you learn to celebrate the moment.

With this blog, I want to share personal experiences and open up a dialogue with others looking to connect with someone that can relate as well as people who do not have experience with disabilities but want to understand this aspect of life more. I also want to offer resources that I have used myself or find that have helped others.

As this blog evolves you will be able to find information on events, camps, clubs, support for parents, educational resources, volunteer opportunities, and many other links and information to help make the best decisions possible for your family and to educate yourself with. The resources are out there but it can be overwhelming. My goal is to spotlight quality resources making it a little easier to navigate.

Another reason I have started this blog is to give a voice to single parents period. Yes, I have a child with a disability but I also have two children that do not. One is grown and has a daughter of her own while the other one still has a few years before he can fly the crazy coop. So, we will talk about trying to raise a healthy family when you have some pretty complicated circumstances and how I have survived by keeping my eyes on Jesus. My stories are not going to be about how I manage perfection but how I manage my beautiful mess.

Later, I will be adding some unique and interesting features that include bringing awareness to small businesses in my area with interviews and information that I hope will be fun to read and even more fun to visit.

Lastly, before my precious children begin arriving home from school and I begin the painstaking task of delegating chores, finding something to make for dinner that will not cause WWIII, and finding a way to make yard work a “fun” family affair, I will just add that I am an aspiring writer with an agenda. This blog will serve as my platform to introduce a very special series of books that I am just beginning to work on. These stories will entertain but more importantly they will educate. That is all I am going to say about that for now but I will reveal exclusive information and introduce you to characters as it comes along.

So, this is it. My first blog and your first look into my life and my purpose. I am excited to see my passion become a reality and I look forward to getting to know all of you.