By Julie Sunne
Baby books never addressed it. Prenatal instructors never mentioned it. Other mommy friends never spoke of it.
They discussed formulas, colic, pediatricians, first haircuts, gender, size, temperament, even discipline measures. But nowhere in my preparation to be a parent, or in the four years after my first two sons’ births, did I hear or read one word of advice on how to raise a child with special needs—more specifically, how to find joy in raising such a child.
More than 19 years ago, I gave birth to a sweet little girl with global disabilities and no instruction manual. Amid the therapy and doctor appointments, the long days and longer nights, and the fears and tears, I managed to piece together my own version of raising my beautiful daughter. More than that, I discovered the rich and rewarding life of a parent, including the parent of children who have unique and special needs.
Here are 10 essential strategies I discovered:
1. Re-energize. Physical and emotional demands can be staggering, leaving us empty at the end of the day. Doctor and therapy appointments, bathing, dressing, and other things contribute to the strain. Take time for yourself. Give yourself permission to spend time with friends, relax with a bubble bath, exercise, work on a hobby, or watch a movie.
2. Tap into available financial resources. Children with disabilities take much more financial, physical, and emotional resources than other children. Don’t be afraid to benefit from local, state, and federal programs. We are not failing our families by using these important ways to care for them and ourselves. For example, we have tapped into funds to pay for camp costs and some healthcare expenses.
Ask your child’s doctor or special education teacher for information on services provided in your local area. Types of resources and how they are allocated varies greatly from state to state. Check with the Department of Human Resources in your state for specific waivers and grant programs. Also, don’t forget to look for financial help through charities and private entities, especially if the need is for more specific items.
3. Use caregivers. Give yourself a break and use in-home respite services if available. Respite organizations provide an adult to watch your child so that you can have a much-needed break. They may be paid privately by the caregiver or through government waiver or assistance programs.
Early on, I had an extremely difficult time accepting the many hours of respite offered because I wanted to be together as a family; I wanted Rachel with us. Eventually, I figured out how to have the best of both worlds. We often bring our respite provider along so that Rachel can be with us. This reduces the pressure on my husband and me while allowing us to enjoy being a family. If respite isn’t an option, there are often friends or family members who would be happy to help if asked.
4. Research out-of-home opportunities for your child. Thoroughly research “out-of-home” respite and camp opportunities for safety concerns. Browse the Internet for special-need camps in your state, dialogue with other caregivers who have children with disabilities, or contact the education department at local colleges and universities (they frequently have students who work at such facilities). Don’t give up until you find some options and then pick the one with which you’re most comfortable. Don’t be afraid to ask for names and numbers of other families who utilize the camp/facility. There are usually individuals who are excited to talk about a good organization.
In our case, we are blessed to have a unique, year-round facility within an hour-and-a-half drive from our home. The facility offers both a summer camp and respite weekends. At first it broke my heart to send Rachel because she couldn’t tell us whether she liked it; however, she smiled through each weekend, and it has been a great experience for all of us. Be prepared to do some crying as you drive off, but rest assured that it does become easier over time. It will give you the chance to do things you can’t normally do with your other children or spouse or catch up on sleep. It is definitely worth it!
5. Meet others who share your experiences. Finding a support group where you feel comfortable sharing is an important way to release pent-up emotions. However, if you can’t find one, consider starting your own. Without a specific diagnosis for my daughter, and living in a rural area, it was difficult to find a support group. So, I began a support group for myself and to help other parents cope with their children’s issues. This is not as difficult as it might sound. Your group may be connected with the school, a church, another business or organization, or simply stand alone. You may wish to deal with general disabilities or ones specific to your child, meet once a week or once a month, line up speakers, or have informal chat sessions.
The school counselor came on board and partnered with me on the group I started. We were semi-formal, shared our experiences and tools, and had occasional speakers. Mostly, though, it was a time to join others who were experiencing similar struggles. This networking opportunity met my needs and helped others as well.
6. Find a listening ear. Surround yourself with family, friends, and church members who are willing to listen. This kind of support is critical. If you don’t have a ready base of family and close friends, shop around for a church home that is able to provide the encouragement you need. Although we have fabulous support from our family and friends, it has meant so much to have our church welcome Rachel so completely despite her sometimes “improper” behavior.
7. Spend quality time with your child. Spend one-on-one time being with your child with special needs—not only next to her, but really reveling in who she is beyond the disabilities. Each of our children has a unique personality with individual likes and dislikes. This is equally true of our child(ren) with disabilities, although it often takes more time to get to really know them.
8. Substitute or adapt activities. When faced with something you can’t do with your child, find an alternative that you can do together. Since Rachel was a toddler, I have had a recurring image of her and me holding hands and running through a hilltop meadow in Wisconsin with our hair blowing in the wind, the sun shining down on us, and big smiles plastered to our faces. Since she still cannot really run, this is a remote possibility. However, we can walk a little way into a meadow and sit together, enjoying each other’s company and soaking up the beauty and tranquility.
9. Relax about the little things. Don’t become obsessed about the little things. As long as your child is safe, give her some room to explore. I have learned that, while Rachel eating a piece of lint or food found on the floor is not desirable, it will not seriously hurt her, whereas constant hovering would be harmful to both of us.
Along with that, don’t worry about what others might think. Rachel does a special “dance” accompanied by noises when she is excited. This is especially noticeable during the sermon at church. I used to be self-conscious and try to suppress it, but now I accept her expression of joy as part of who she is.
10. Let God in. Most importantly, don’t try to make it on your own strength. The Lord’s grace is essential in raising all children, but especially all the “Rachels” out there.
As I began to lean more on the Lord, I realized that during my lowest moments I would receive just the right amount of encouragement to get me through. At times, it was as simple as catching a glimpse of Rachel wrestling with her brothers, squealing with delight, or sitting on the floor with her head in my lap doing some mother-daughter bonding.
Seek God and allow Him to carry you through those times when you think you can’t go on. He won’t drop you.
Experience the Joy
Raising children is not easy. Raising children with disabilities is even harder. I know that, barring a miracle, Rachel will not wake up tomorrow thinking and behaving like a typical 19-year-old. And as she grows, the challenges will grow as well. Taking a short break once a week or attending a support group will not eliminate the difficulties. But raising a child with special needs can be done with great joy and contentment.
Implementing these 10 strategies creates a margin for gaining perspective, allowing one to breathe out toxic fumes of bitterness and frustration and breathe in the empowerment of the Holy Spirit. Now, when despair threatens to overtake me, I remember 2 Corinthians 12:9: “My grace is sufficient for you, for power is perfected in weakness.” When feeling challenged, I can look past the difficulties and revel in the joy of raising my beautiful daughter, Rachel.
Julie Sunne is a writer, author, and editor. She and her husband, David, are parents to three amazing double-digit sons and a precious young-adult daughter who has significant intellectual disabilities. She is passionate about helping women discover purpose and hope in the trials and blessings of their messy days through the incredible grace of Jesus Christ. Julie resides with her family in Northeast Iowa where she regularly shares biblical hope and encouragement at JulieSunne.com.
This article, and others like it, can be found at clmagazine.org/topic/human-dignity/my-beautiful-daughter-rachel-10-strategies-for-raising-a-child-with-special-needs.
