What to do when your child receives a special needs diagnosis

Receiving a diagnosis for your child can be an incredibly stressful time. Perhaps the diagnosis is something you’ve expected, and having a name for what you’ve suspected brings relief. Sometimes, however, a diagnosis can be unanticipated and may bring a wave of grief, worry or anxiety. Here are a few practical and spiritual applications if you find yourself navigating these waters.

Consult Your Pediatrician

First things first; check with your pediatrician to get as much information about the potential diagnosis as possible. Your pediatrician will be able to provide you with basic information about the diagnosis as well as potential next steps and specialty referrals. 

You may want to immediately launch into action mode. There’s nothing wrong with being a go-getter and doing everything in your power to get your arms around your new reality. There is value, however, in taking time to breathe and pray. You may not feel like you have the words to pray, which is OK. Romans 8:26-27 says that God sends the Holy Spirit for times just like these:

Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words. And he who searches hearts knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God. 

Visit with Developmental Pediatrics 

Depending on the challenges you’re facing, your pediatrician may not have all of the answers for a diagnosis. You may receive a referral to a physician who specializes in developmental pediatrics. This might seem scary, but it’s a valuable step to help you gather more information about your child’s specific diagnosis. This is likely where you’ll receive a medical diagnosis, which is the key to many of your next steps. 

As you begin to navigate the weeks and months to follow, don’t forsake your communion with God. This journey you’re beginning is no surprise to a sovereign God. You may have more questions for Him than answers at this point, but the Bible makes it clear that our Heavenly Father knows us—including our children—inside and out. Psalm 139:14-15 reminds us that God knows us intimately.

For you formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well.

Once you’ve received a medical diagnosis, you’ll have the proper documentation to move forward with helpful services, including: 

  • TEFRA coverage (Medicaid) which provides financial support for a Personal Care Assistant (PCA) and medical expenses for children with special needs.
  • Waivers for funding for long-term care needs, including modifications to your home or bathroom.
  • Early intervention services through BabyNet or Child Find in South Carolina. These services will assist with referrals for interventions such as physical therapy, occupational therapy, and speech and language services. 
  • Academic diagnosis, which will assist with interventions within the public school system.

These are the basic interventions that will get you started. Start here before you dive into the endless options for additional services. 

Identify Your New Normal 

Parenting a child with special needs will likely change your routine and your schedule. Adding services, therapies, and interventions has the potential to fill up your calendar. 

This might also be a good time for you, as a parent, to identify your support system. God designed us to do life in community. The Word of God is full of examples of how followers of Christ should gather together, rejoice together, mourn together and simply intertwine their lives. Ephesians 4: 1-3 is one such example: 

I therefore, a prisoner for the Lord, urge you to walk in a manner worthy of the calling to which you have been called, with all humility and gentleness, with patience, bearing with one another in love, eager to maintain the unity of the Spirit in the bond of peace. 

When parenting a child with special needs, community is even more crucial. You may feel like no one else can understand what you’re going through. Don’t believe that lie! Join a community of others who are also navigating life as parents of children with special needs. A healthy community should:

  • Support and encourage you
  • Pray for you
  • Help you feel like you’re not alone
  • Share resources and helpful tips

Seek Additional Resources 

Once you’ve settled into your new routine and identified your support system, you may have the desire to search for more resources for your child. The best resources will often come to you from your support network, so be sure to ask your fellow parents for recommendations. In addition to physical therapy, occupational therapy and speech, here are a few types of resources to consider:

  • Feeding Therapy
  • Aquatic Therapy
  • Music Therapy
  • Pelvic Floor Therapy
  • Equine Therapy
  • ABA Therapy
  • Art Therapy
  • Sensory Integration Therapy

Lastly, continue to seek the Lord. Some days will be harder than others, but He will never fail you. Matthew 6:25-34 reminds us that we should not be anxious, because the Lord will provide for us. Additionally, 1 Peter 5:7 reminds us to trust God with our anxiety, because He cares for us.
Click here for more information about the All-Access Special Needs Ministry at Church at The Mill. If you need help getting connected with other parents of kids with special needs, contact Laura Dyar, All-Access Ministry Director. If you are struggling, our Church at The Mill Biblical Counseling Ministry is here to help.

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