10 Ways for Fathers of Special Needs Kids to Love and Lead Their Families
My wife and I are 13 years into caring for our oldest son who has complex medical and special needs. It has not been an easy road. God has helped us through 5 open-heart surgeries, a trach, ongoing in-home nursing care brain surgery, significant recovery from illnesses, seizures, hundreds of days in the ICU, numerous developmental disabilities like autism and sensory processing disorder, and over 30 surgeries so far.
Most often when I write on disability it is theological in nature. Yet while the theological is the foundation of practical living, sometimes the practical is well…just a lot more practical. As a father and husband I am still learning how to care well for my family as we continue to walk through seasons of significant sorrow. God truly has brought us from "strength to strength" as we journey through some deep valleys (Ps 84:7).
Here are 10 ways a dad of a special needs child can practically love and lead his family. Now, let me be clear, there are more ways for fathers to lead their family than only these 10 that I offer here. Ways like making sure your family is involved in a solid church or being financially wise in the midst of lots of medical expenses, but you have to start somewhere.
10. Be the first awake and the last to bed
This isn't a law. But it is a practice that has probably made the biggest impact in my life. Being the first awake means I are readying my heart for what God has for me today before the needs of the day even begin. It means pursuing daily bread and living water in Jesus Christ through glimpses of his glory within the Scriptures. It means being the most productive I can be while people with significant needs are safe in their beds. This practice has helped me commune with Jesus more, finish degrees, write better, and be present throughout the day when the needs are highest. Being the last to bed means I am the protector. Often my wife and I are up together, but if needed I try to be the last parent up helping a child who is struggling or who needs different medicines so she can rest first.
9. Realize your days and nights aren't your own.
I'll be honest, this is something I am still learning. I am a planner. Like get out the whiteboards, graphs, calendars and let’s plan baby! I think in a daily life with so many unknowns and changing needs, it helps me feel like I have some control while also helping to reduce the number of decisions I need to make in harder moments. But you can’t plan all of life. Kids get sick. Parents lose their jobs. Life happens. Timelines get delayed. Even 13 years into parenting with extensive daily needs, I still expect I can get more done in one single day than I often realize is humanly possible. This is because I am a constant multitasker, often to my own detriment. While I'm doing a neb for my son I try and write the outline of a chapter in my head. While I am pushing the stroller on another walk because it has been another hard day, I'm drafting business projections and five year plans. Some of this is about redeeming time and making the most of it, but I continue to realize that being present isn't the same as being engaged. While sometimes life demands the multitasking, it often doesn't. I don't have the freedom to schedule my day because God has given us responsibilities that have needs and those needs determine when and how we live our days. That's not catering, that's what love is, serving.
8. Care intentionally for your other children.
Besides our oldest son with special needs we have three other precious young souls in our home. All ready at a young age our children have been exposed to more needs and more medically traumatic circumstances than most people face in their entire life. If you have other kids as well, then you know that they live under a special weight and blessing as being in a family with a special needs sibling. But don't neglect that they have significant needs as well. Learn how to draw out their hearts. Chisel out time in your day for one on one time and then guard it like crazy. Your kids will need different things in different seasons as they grow through different ages and stages. Sometimes it’s reading a book, going for a walk, playing nerf gun wars or a board game. Just get in the time on a regular basis and be intentional with them. Care for them. Talk to them and ask what they are thinking and what can be helpful. At the end of the day Fathers, you have the responsibility to love and train up all your children not just the ones with the highest needs.
7. Absorb as much of the hard as you can so your wife and other kids don't have to.
There are many noble types of courage and sacrifice in this world. We often praise the actions that happen in the intensity of a desperate or dangerous moment of need. And hear me, these are praiseworthy. But it takes a different type of courage to stand in the gab again and again, day after day, procedure after procedure, night after night for the sake of your family. One of your responsibilities and joys as a husband and father is to bear the greatest load and absorb the harshest winds so others in your family don't have to. I completely understand that we can't change circumstances. I wish I could take so much suffering from our oldest son and take it for him, but I can’t so often. Yet we most definitely can change how the circumstance influence and effect those in our family. Again and again I see mothers bearing the brunt of the hard for their families. Gentlemen, stand up as fathers and be the rock of strength and dependence your family needs. And let's make sure we are clear that we can only be true, authentic, and lasting sources of strength to others when we are solidly situated upon Christ the only true source of strength who absorbed the hardest of hard for us. Get your strength from Christ and then move out to be a strength for you family as you ultimately directly them back to him.
6. Embrace your unique life and story
Comparison is helpful at times but deadly when it creates ongoing expectations. We still, after living a very intense life for almost 15 years, need to remind ourselves often that most people's life is not like our life. We make decisions and plans through a different grid. We evaluate differently. Our hard is different than 99% of others. This also means that high needs have pushed us to value very different things, to make different lifestyle decisions, even to not pursue interests and desires for the good of our family. Most often people just won't get our life because they don't live our life. Yet be careful not to force expectations for your life into the mold of most people's lives. It can be subtle from how holidays are spent to large things like daily life, work schedules, and vacations. God has given you a unique life with unique blessings and joys. Embrace it and live differently!
5. Lead your family in reading God's word and praying together
Let's be honest, Reading, singing, and praying with young children, and those special needs is hard. But don't lose heart! One of your primary jobs as a father and husband is to lead your family in a knowledge and love for God. This centers on being in God's word and worshiping Christ together. Make your home a place where God's word is heard often and Jesus isn’t just someone you pray to at dinner but speak about throughout your whole day. Give yourself the flexibility to adjust in how you read and sing and pray as the needs of your family shift and change overtime. But make it your ambition to be in God's word together regularly. If this feels overwhelming to you, or you feel like you can't do it, there are plenty of amazing resources not to mention just using the Bible itself and singing hymns.
4. Don't be afraid to ask for help and delegate responsibilities
Although I'm still growing in asking for help, the business phrase coined by Dan Sullivan, "Who not how" was revolutionizing to me the first time I heard it. Most often when something needs to be done, I try and figure out how to do it myself or as a family. Yet like a good helper, my wife keeps reminding me, “You can't just keep adding.” Good Point. Asking for help is a humbling but necessary task, especially when any of your kids have high needs. Your family simply can't do it all. One of the best ways you can love your wife, is to make your family not only dependent upon her. If you are part of a church, there should be a natural community you can depend on outside of your family who can lighten the load and help even if it's for a short season. But “who not how” isn't just about people, think of specific tasks as well. For instance, I don't mow my own grass and I don't shovel my driveway. Now these choices come with a minor cost each month, but they typically end up saving me a couple hours per week. These hours I spend writing, working on our business, spending time with my kids and wife, and being present to meet the needs of our children. Get creative, even if it cost money. Your time is more valuable than your money!
3. Focus time and energy on your relationship with your wife.
If you have a child with special needs, especially one that is medically complex then you know how all encompassing it can be to care for your kids. The needs have a way of expanding to fill up all hours of the day and often the night. The statistics are clear, however, in about half of marriages that involve caring for a child with special needs, it needs end in divorce. Life is hard as a special-needs parent. It’s filled with many joys but it is challenging, discouraging, and often exhausting. Yet take advantage of and love deeply the person who is with you in this daily task. Figure out how to prioritize time and energy with your wife. Chances are that she is bearing more of the family load than you are. It's going to take sacrifice in other areas and it's going to take saying no to many things. But what a joy to take care of your bride and grow deeper with her year by year. For us, because dates are often a rare reality, we set aside about two hours every single night for time together. Sometimes we are watching things, sometimes we are reading fiction books books, sometimes we are playing a game or doing a puzzles while we listen to business books, and sometimes we just talking. These hours are invaluable for the health of our marriage and the health of our family. Take the lead husband and make your bride a priority!
2. Guard your family from negative and harmful influences
Harmful influences abound in our world. From what is taught at schools, to what's on the TV, to what's constantly coming across on our smart phones. Dads, you are the gatekeeper to your house. You control what goes before your children's eyes, what goes into their ears, and the influences that surround them. Be ruthless about what influences your children. Even if it's relatives, relationships, or friendship that people will be offended that you put to an end. Guard your children's hearts and the heart of your wife. People often will not understand your decisions because of the ongoing needs of your family. So be in God's word, immerse yourself in prayer, and have some trusted voices of wise council. Ask the Lord to give you wisdom to defend and care for your family. In the end it isn’t just harmful influences but what some would consider morally neutral ideas and voices that can end up leading those in your family astray. Additionally, if you have a special needs child you will encounter opposition in this world in a particular way. Culture most often does not ascribe value and worth where the Bible does. Be bold and stand upon God’s truth.
1. Keep trusting in Jesus and don’t give up.
Friend, do not grow weary in doing good. God has given you a child with special needs and he has called you to something extraordinary. He has given you an opportunity to love as a sacrificial servant. But let me be clear, You cannot do this on your own. The one who has called you, will equip you. He has promised to strengthen you, to guide you, and to help you. Which means you are not alone, you are not fighting this battle and leading and loving by yourself. The quality of your care for your family is directly tied to your communion and trust in Christ. He will sustain you and help you each day, although it can be excruciating and difficult. Just keep going! Hour by hour and day by day. And then watch as he does it again tomorrow, and the next day, and the next day, until your last breath.
