What I’m about to say may sound terribly selfish and not very “motherly,” but I want you to know I share this from my heart, as one who has experienced physical exhaustion and emotional anxiety, along with feeling mentally drained and even resentful at times. I have battled with the feelings of guilt when a Calgon moment is just not enough to get me through my day. Raising a child with special needs can be as challenging as rock climbing in an ice storm. What am I saying? Raising any child is challenging, but the difference between the two is that you are never sure whether your special needs child can comprehend the circumstances that surround them or if they’re just ignoring you with a grin on their face and a “catch me if you can” attitude.
For the normal child, we anticipate many milestones. They get their driver’s licenses and go to school dances. There are sleepovers, the first boyfriend or girlfriend, mother/child talks, and even a bit of rebellion. You know, the normal, everyday stuff. But you may be surprised, that when it comes to rearing a child with special needs, the rules remain fairly similar: keep them on the child’s level, care for yourself, and find rest for your mind, body, and soul.
Nicholas, my “forever-five child,” has taught me a few things about parenting I never would have learned from a book, Oprah, Dr. Phil, Dr. Dobson, or even Sesame Street. He steals everyone’s heart and has more love to give than anyone on earth (okay, I’m biased). At age 17, he can be such a gentle child. But, watch out! The next minute he might get agitated, go on a rampage, and pretty much destroy the peace that existed in our home just seconds ago. No one knows why it happens, and we have found no immediate solution. I do know one thing—having the active participation and support of my husband, Tim, and having God’s leading in our home, gets us through the unbearable days.
Here are five steps to take to keep your sanity through the trials of raising a special needs child. (They may not work with every parent or every child, but they have helped us.)
1. Spend time with God.
Nothing is more important than making time to read, reflect, and revive in the Word of God. God has a way of showing up and showing us what we need at just the right time. His Word is forever edifying, and when we dig deep into Scripture we will find food for rejuvenation. Here are a few of my favorite verses that sustain me when I am having “one of those days”:
- “In your anger do not sin”: Do not let the sun go down while you are still angry,” (Eph. 4:26). Even after discipline, I will sit with Nick and spend extra time showing him how much I care for him and I always tell him, “I love you” before I turn off the light.
- “I can do all this through him who gives me strength” (Phil. 4:13). When I think all is lost and I have no more strength to take on another argument, this verse reminds me that it is not my strength I need to depend on, but God’s. Only He will carry me through.
- “When Moses’ hands grew tired, they took a stone and put it under him and he sat on it. Aaron and Hur held his hands up—one on one side, one on the other—so that his hands remained steady till sunset” (Ex. 17:12). This is not a last resort verse, but a marvelous reminder that I can call my prayer warriors to uplift me in my time of need. We all need those prayer warriors to support us in prayer when weary.
2. Spend time with your husband.
I find this difficult to accomplish. We have busy schedules and are exhausted from working long hours and doing household chores. However, time with your spouse is a necessary element in building strength in your family. Set apart a date night or even a coffee hour. My sister’s husband recently succumbed to cancer. My heart broke when she told me her hardest time was morning. That was their time when they would sit and talk about their day over coffee, just the two of them. That time was precious. Do not waste precious hours! Find time together to pray, converse, hold hands, snuggle, reminisce, and plan your future. This will give you a unified front and a combined strength.
3. Make Time for Yourself.
I have an annual retreat I attend that is spiritually refreshing. I also have hobbies that enable me to sneak away to enjoy some girlfriend time. Lunch with a sister, a walk with my iPod, or a cup of tea on a wintery night with my favorite novel after Nicholas is tucked into bed are also favorite quiet times. Be sure to make time to unwind.
4. Stick to the Schedule.
We also have a 20 year old still at home, along with Nick. Between work, sports, college, and just plain fun, we have a hard time keeping track of his social calendar. However, when it comes to me, my husband, and Nick, our schedule is quite constant. I have learned that a well-ordered day suits Nick, as it enables him to function better. This routine allows us to maintain a pleasant pace and provide peaceful security for Nick. There are even times we may decline an invitation extended by friends, as we know it will only make for a worse day tomorrow, all guilt-free.
5. Love.
The love displayed by my special needs son is overwhelming. It is greater than any love I have ever experienced, except the love of Jesus Christ. It is an unconditional love. Love radiates from Nicholas and is truly contagious—it’s a constant reminder to me about how I am to love others. It is without hindrances and without prejudices. This is the love Jesus talks about throughout the gospel: “’Love the Lord your God with all your heart and with all your soul and with all your mind.’ This is the first and greatest commandment. And the second is like it: ‘Love your neighbor as yourself’’” (Matt. 22:37-38).
If you’re having one of those days with your special child, remember, there is peace in the presence of Jesus. He will supply you with all you need to get through each moment. He has gifted you with the awesome task of raising a special needs child, who can be the perfect picture of Christ’s love. Praise Him for the opportunity to share this child with the world.
~ By Tammie Swaney. Since this writing, after a short illness, Tammie’s beautiful son, Nick, has graduated to heaven. Tammie Swaney is a minister and solo pastor in the rural, Twin Tiers of New York State. She is a wife, mother of three, and grandmother of four.
