To the Family of a Child With a Behavioral or Neurological Disorder

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This is for the family whose life is not as they expected it would be.  It is for the family who may seem normal from the outside, but on the inside is hurting, lonely, exhausted, confused, stressed, and unsure of the future. It is for the family who lives on egg shells in their home, trying their best to parent a child who constantly demands their attention, energy, and emotions. It is for the parent whose expectation for the family they thought they would have has been shattered by the reality of physically and emotionally draining episodes, doctor’s appointments, therapies, diets, and structured days dictated by an attempt to avoid as many issues as possible. It is for the family who wants to help their hurting child, but feels helpless to do so. It is for the family that aches at the negative effects their child has on their other children. This is for the family who feels judged by the looks of others when their child acts out or does something inappropriate. It is for the family who feels anger towards their child for the pain they cause, and then guilt for feeling such anger. It is for the family who wonders if they did something wrong or could have prevented the struggles they face. It is for the family who asks, “Why, Lord?” This is for the family who has been given the responsibility of raising a child with a behavioral or neurological disorder.

Unlike many diseases, illnesses, and injuries that can be diagnosed, explained, and treated, most behavioral and neurological disorders are complex, unique, perplexing, and as shifting as the wind. Even a diagnosis barely suffices to describe the drastic impact these disorders have on the life of a child and his/her family. The majority of these families live in utter isolation, feeling as though no one really understands what they are living through. The reason for this is because, unlike many special needs which are visible to the eye and more easily recognized, a child who struggles with certain behavioral disorders is often assumed to be a child who has no structure or parental guidance. This same child can present themselves as smart, respectful, and well mannered for a period of time, only to quickly turn into a completely different child moments later. Because of this, others often assume the problem is poor parenting or that this is simply a strong willed child. Having made this judgment, they then determine the parent has exaggerated the situation, since when they see the child he appears perfectly normal. While this topic may not mean much to those who aren’t experiencing this personally, my hope is that it will reach someone who is, and who is hurting and alone because of it. I also hope that it will bring awareness to those who have not experienced such disorders, so that they might be more aware and sensitive to the many families around them who are.

One thing that’s certain is I do not have the answers. I wish I could say that we’ve come through our struggles and are now on the other side, having found healing and answers. But, we haven’t and don’t have any guarantee that we will, at least in the physical sense. However, those answers wouldn’t bring true hope anyway, since our true hope does not lie in the right doctor, a diagnosis, an explanation of what went wrong, or what can be done about it. Our hope lies in believing and trusting that this is all part of God’s good and loving plan for our life, our child’s life, and all who are affected by it. Our hope lies in believing that Jesus Christ can take what is broken and destructive and turn it into something beautiful and eternal. That, and that alone, is what keeps me pressing forward.

If you are reading this with relief that someone else understands, this is what I’d like you to know.

You are not alone. But when you feel alone, let it drive you to Jesus Christ.

Yes, there are others who are suffering as you are. There are others who find themselves afraid, hurting, confused, and broken as they try to navigate these unchartered waters. There are others who find themselves tossed between disappointment, anger, and sadness for their child and family, simply trying to keep their world from crumbling.

The reality is, there will often be times when we feel alone. This loneliness can either drive us to isolation and self-pity or, to find our strength, comfort, peace, and joy in Jesus, who will never let our foot slip (Psalm 121:3). Grasping this has sustained and carried me through countless painful moments that I have had with my child, as well as my other children as they wrestle through what they don’t understand. When I find myself in a heap on the floor, flooded with the emotion and pain of something much bigger than I can wrap my mind around, I am quickly driven to cry out to Jesus in my hurt and loneliness, knowing that He both hears and cares. In that moment, when chaos crashes around me, I have some semblance of peace, even for a moment. Often, it is not until later that I look back and realize His provision, protection, and presence that carried me through.

If you find yourself walking through church, your job, or the grocery store, feeling as though no one can enter into the pain that weighs heavy upon you, let it drive you to ask Christ to fill you with more of Himself. We will find contentment in knowing that Christ knows our pain, is intricately a part of every aspect of our life, and working to use all these things for our good (for those who love Him). Remembering that Jesus Christ proved His love for us at the cross, we can step out in faith and confidence without needing the approval and complete understanding of those around us.

“The Lord is righteous in all His ways and kind in all his works. The Lord is near to all who call on Him, to all who call on Him in truth. He fulfills the desires of those who fear Him; He also hears their cry and saves them” (Psalm 145:17-19).

You have hope.

There is present hope for the believer in God’s perfect and sovereign will over their lives, and future hope for an eternity where all things will be made right; all tears will be wiped away and all we have endured with patience and faith will be rewarded with the glorious presence of Christ. Our hope must never lie in our earthly circumstances. Whenever we start daydreaming about what could be or what could have been, we will find ourselves discontent, frustrated, and stressed out. The Lord has taught me through some very dark and heavy circumstances that He alone is my unshakable hope, no matter the outcome of my circumstances. If my worst fears come to pass, He will empower me, somehow work it together for my good, and glorify Himself through it. If my greatest earthly desires for healing and answers come to pass, it will be because of His grace, for my good, and for His glory. Somehow, God will be good and sovereign, regardless of what He allows in our situation, both now and in the future. Because of that, we can hold fast to the hope we have in Christ, despite how hopeless our circumstances may seem.

“Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us” (Romans 5:2-5).

Your identity is not defined by your child.

This can be so hard to remember for the parent whose child is commonly labeled as out of control, disobedient, disrespectful, aggressive, and “different”. No matter how much I remind myself of this truth, I am often tempted to feel ashamed and embarrassed by my child’s behavior, fully aware of what other people must be assuming about us.

Our security and confidence cannot be defined by our children, parenting, or anything other than who we are in Christ. If you are a Christian, trust that you have been chosen and called to parent this child. If the God who spoke all things into creation ordained this in your life, who else’s opinion should even come close to stealing the confidence and security you can have in His loving purpose for you? No, this isn’t easy. We all desire acceptance and approval from those around us. But because we cannot control the thoughts or opinions of others, our confidence needs to be secure in who we are in Christ alone. Although this will be a lifelong process, we can grow in this confidence as we spend time in the Word, fill our minds with what is true, and pray for Christ to help us in this area.

“He (the Lord) heals the brokenhearted and binds up their wounds. He determines the number of the stars; he gives to all of them their names. Great is our Lord, and abundant in power; his understanding is beyond measure” (Psalm 147:3-5).

God has given you a unique opportunity to display His glory to a world suffering without hope.

The one realization that changed my outlook on my life, my child, and family’s struggles is that it’s never been about me. If I dwell on thoughts that reflect the thinking that I was put on this earth for my own happiness and purpose, such as, “My life is so hard”, “I could do more in life if I didn’t have this hardship”, or “I am missing out on what my life could have been”, then I can easily get sucked into discontentment, anxiousness, and despair. By God’s grace, none of us are separate from His will and sovereign plan. Therefore, we can be encouraged and strengthened even in our hardest circumstances when we realize that God is working in and through them to make us more like Him and display His glory to those around us.  

“For my thoughts are not your thoughts, neither are your ways my ways, declares the LORD. For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.  For as the rain and the snow come down from heaven and do not return there but water the earth, making it bring forth and sprout, giving seed to the sower and bread to the eater, so shall my word be that goes out from my mouth; it shall not return to me empty, but it shall accomplish that which I purpose, and shall succeed in the thing for which I sent it. (Isaiah 55:8-11)”

As much as we try to seek for answers and help for the often overwhelming circumstances surrounding our children, we must always remember that God Himself is the answer that we need in both the earthly and spiritual sense. He knows each member of our family intimately and is working His good purposes in each of our lives, often in ways different than we ever would have expected. As we learn to trust Christ and find joy amidst what seems inconvenient and destructive to the world around us, we become a beacon of light to draw others to the joy and hope we have in the gospel.

If you have been given the privilege and responsibility of raising one of these challenging, but precious children (or someone you know has), I pray that you will be strengthened with these truths and reminded that you, your child, and your family are part of God’s perfect plan of redemption. Although we aren’t promised healing while on earth, we are promised that Christ will not waste one tear we shed over these painful effects of sin within our world. You are not hopeless, you are not alone, and you are not defined by your child’s disorder. Rather, you have been entrusted with a unique opportunity to raise a child with special needs for the glory of God. Through the grace of Jesus Christ, He can take what seems pointless and destructive and use it to draw you to Him, mold you to reflect His image, and glorify Himself mightily through your life and story.

In Christ,

Sarah Walton

 

2 thoughts on “To the Family of a Child With a Behavioral or Neurological Disorder

  1. That was so good to read, thank you for this, Sarah. Reading the first part made me think about Mason and the fact that he has no physical abnormalities for others to think he’s any different from any normal little boy. In fact, he doesn’t really have any issues learning things either. But he has severe social anxiety making it difficult to meet new friends in our new home. We have family, in fact, that wouldn’t spend any time with him by himself because of his issues with this. But when I continued reading, (which I’m so glad that I didn’t stop with the stuff I could really relate to) I loved reading about what you reminded me of in God’s word. I do have the issue of “making it about me,” but I have to remember what God’s word says and not worry about what others say or think. Not even if that someone is family who insists that the answer is medicine. Please don’t take that like I’m against using medicine if in fact it’s needed, but I have a problem with our world trying to fix everything with a pill. Our first defense is not of this world, God does provide through this world but if we jump right to that before giving Him a chance to move, we’re not looking up first. Anyway, all that to say thanks. Your writing has and continues to bless my heart.

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    1. This is exactly the reason I wrote this! It was spurred on by both my own journey, as well as others that I have seen struggle as we do. In fact, these truths really apply to any kind of suffering we endure. However, this specific type of suffering can have so many layers of struggle, often that many can’t see from the outside. So I’m praising God that you have seen truth and encouragement through these reminders in His Word. I need them almost constantly! Praying for you and your sweet boy. We press on, praying for wisdom and trusting God’s ultimate plan for our lives. One moment at a time…

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