8 Helpful Tips for Parents of Children with Disabilities and Difficult Diagnoses

A disability diagnosis can initially be tough for parents to hear. “Your child has a hearing impairment … or autism … or a spinal cord injury.” No matter the cause, a disability diagnosis can shake a parent’s view of how they expected their child’s life to turn out.

However, there is hope for joy, accomplishments and purpose — perhaps in ways that wouldn’t have been possible otherwise. Consider eight helpful tips for parents of children with disabilities.

1. Give Yourself (and Others) Grace

Accepting the diagnosis can take some time, and that’s understandable. Take a deep breath, give yourself grace and lean on the Lord for support. Don’t expect yourself to have all the answers. Also, remind yourself that children are resilient and can do great things in the face of challenges!

I waited patiently for the Lord, and he turned to me and heard my cry for help. Psalm 40:1 (CSB)

Now may the God of hope fill you with all joy and peace as you believe so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13 (CSB)

2. Educate Yourself — with Caution

Learn about your child’s diagnosis, but approach this with caution. Although it may be tempting to research online, don’t believe everything you read. Ask your health care provider for reputable resources and remember that conditions and outcomes often vary per person.

Stay current with the latest authoritative research and familiarize yourself with the terminology to make the most of conversations with specialists. Consider joining research initiatives that can help advance progress.

3. Find Support

Developing a support system can help you cope with difficulties, make valuable connections to resources, prevent isolation and provide encouragement. Here are some ways to surround yourself with a community of others who can relate and offer support:

• Accept help from family and friends. Remind yourself that those who offer help do so because they love you and your child. When someone plans to watch your child, create a list of specific needs, schedules and expectations. Sometimes, as a parent, you may be tempted to feel bad for needing to provide additional steps and guidelines for caregivers. One way to overcome this is to help them understand the reasoning behind this.
• Seek support groups through your health care provider, associations, social media, advocacy groups, state organizations, caregivers or church family. Other parents can offer a wealth of knowledge and experience to help walk alongside you as you navigate this journey.
• Determine what type of support group works best for you, whether videoconferencing, in-person, a social media group or another format.
• Consider respite care, which provides a short-term break from the 24/7 responsibilities of being the primary caregiver. By allowing someone else to temporarily watch your child, you can make time for your own physical and mental health. In addition to traditional respite care, some churches offer respite days or nights a few times a year, often at no cost.

Carry one another’s burdens; in this way you will fulfill the law of Christ. Galatians 6:2 (CSB)

4. Build Your Care Team

Professional care is critical in developing a treatment plan, monitoring your child’s progress, identifying challenges and teaching coping skills. Make the most of your child’s care with the following tips:

• Find trustworthy and knowledgeable specialists who will champion the best life for your child.
• Keep appointments and bring a list of specific questions.
• Prepare your child for appointments by explaining what to expect or through role play.
• Participate in applicable therapies, such as occupational, physical, vision and speech therapy. Also consider private therapy that may add additional value.
• Find out what your health plan covers, including prescription medications and medically necessary equipment.
• Create a Care Notebook to help keep track of important information for your child in one location.
• Ask questions or seek a second option if you feel uncomfortable with a health care provider.

5. Utilize Resources for Children with Disabilities

Your child may have access to programs, support or benefits to help them thrive. Some of these may include:

• Early intervention programs: Publicly funded programs provide services for free or at a reduced cost. Find information about programs in your state.
• Supplemental Security Income (SSI): SSI provides monthly cash assistance to people with disabilities and little or no income or resources.
• Parent Training and Information Centers (PTIs): These centers help parents participate in their child’s education and development.

6. Know Your Rights

Let’s say a child who uses a wheelchair enrolls in a school with three stories but no elevator. Is the school required to make accommodations for accessibility? Or if a child has low vision, is the school required to provide large print books, Braille or other alternatives? The answer is yes.² Knowing your rights helps you navigate life with a child with a disability.

• Your child’s rights to special education: The U.S. Department of Education states that the Individuals with Disabilities Education Act (IDEA) ensures appropriate public education and special education for eligible children with disabilities.¹
• Your child’s right to state/local services: Title II of the Americans with Disabilities Act states that state and local services, programs or activities (including public schools) must “give people with disabilities an equal opportunity to benefit from all of their programs, services, and activities.”²
• Your right to take FMLA leave: The U.S. Department of Labor states that the Family and Medical Leave Act (FMLA) provides parents with job-protected leave from work to care for a child “with a serious health condition who is incapable of self-care at the time the FMLA leave will start because of a mental or physical disability.”³

7. Advocate for Your Child

Interactions with others: There may be times when others make assumptions, unintentionally make hurtful comments or don’t choose the best words regarding your child’s disability. This may be due to a lack of understanding and experience. Extend grace and educate family, friends, childcare workers and other children so they may be better equipped to respond appropriately in the future. And just as important, teach your child to advocate for themselves!

Siblings: Children with disabilities often need extra time and attention, which can potentially create challenges with siblings. As you teach brothers and sisters about the child’s needs, help them understand their important role in helping meet those needs. Also, remember to praise and encourage siblings’ individual talents and interests and enjoy one-on-one time together.

At school: Parents of children with disabilities will work with a school committee to develop an individualized education program (IEP) and attend regular meetings to discuss progress. While most educators want what is best for every child, there may be times when you need to push for your child’s best interests — because you know them best. Perhaps a deeper understanding of your child’s abilities — or adjustments to the current plans — may be needed to better fit your child’s needs.

A patient person shows great understanding, but a quick-tempered one promotes foolishness. Proverbs 14:29 (CSB)

Be patient with one another. If any one has a complaint against another, forgive that one. Christ forgave you. So you should forgive each other. Colossians 3:13-15 (CSB)

8. Care for Yourself

You are your child’s strongest advocate and caregiver. The stronger and healthier you are, the better you can care for your child! Therefore, it’s essential to care for your well-being.

• Stay in the Word and in prayer.
• Take care of your physical body.
• Find something you enjoy and make time for it.
• Acknowledge that accepting help from others is not selfish — it can help you stay strong for your child in the long term.
• Set realistic boundaries and learn to say “no” to things that aren’t a good use of your time.

Guard your heart above all else, for it is the source of life. Proverbs 4:23 (CSB)

Don’t you know that your body is a temple of the Holy Spirit who is in you, whom you have from God? You are not your own, for you were bought at a price. So glorify God with your body. 1 Corinthians 6:19-20 (CSB)

Wellness Tools and Programs Make a Difference

At GuideStone^®, we design our health plans and wellness tools with your and your child’s well-being in mind.

Coordinating health care for a child with a disability can feel overwhelming at times. Our health plans provide access to a patient advocacy team to help support your unique health care needs.⁴ 

When scheduling a medical service, you can earn cash rewards using SmartShopper^® to shop for medical services such as MRIs and CT scans.⁵ Or are you managing diabetes? Our Twin Health™ program helps reverse type 2 diabetes.

For more information, contact us at Insurance@GuideStone.org or 1-844-INS-GUIDE (1-844-467-4843), Monday through Friday, from 7 a.m. to 6 p.m. CT.

GuideStone welcomes the opportunity to share this general information. However, this article is not intended to be relied upon as legal advice or medical advice, diagnosis or treatment.

We are thankful for several GuideStone employees who have children with disabilities and difficult diagnoses, who contributed, enriched, corrected and affirmed much of the content developed for this resource.

¹Sites.ed.gov/idea/about-idea

²ADA.gov/topics/title-ii

³DOL.gov/agencies/whd/fact-sheets/28k-fmla-adult-children

⁴Global Core plans do not have access to Clarity.

⁵Cigna International and Medicare-coordinating plans are excluded from wellness tools and additional benefits. SmartShopper is not available with Blue High Performance Network or Medicare-coordinating Plans.