Got a Diagnosis. Now What?

Whether we like it or not, the day we received our child’s diagnosis is a day we will always remember. It’s etched forever in our memories.

The emotion. The fear. The panic.

Or maybe it was the relief. The “I told you so,” someone finally admitting that there is, indeed, something going on.

The finality. The reality. The label. Seeing it in writing. Hearing it spoken. It’s all very real. Learning to say it yourself, the diagnosis.

For parents who have recently gotten your child’s diagnosis, welcome to the club. We’ve all been there. We truly know what you are feeling.  Here’s what to do first:

1. Cry. You have permission to cry, and today’s a good day to do it. Cry for your loss and fear. This won’t be the last time you cry over your child’s diagnosis, but it’s a good time to go ahead and do it—and do it good.
2. Find someone to support you. Even if it feels like it right now, you are not alone. There are families who are already doing this. There are people who understand what you’re going through. Connect with people who get it. Contact your local Arc organization. Contact agencies in your area focused on disability, special education, or your child’s specific diagnosis. Find support groups at the hospital. Join Facebook groups for parents. Search for groups and agencies on this website. Don’t hesitate to reach out even today. These relationships will be vital.
3. Call today and add your child to the interest list (wait list) for Medicaid waivers. Don’t worry about researching whether or not your child qualifies right now. Your child doesn’t have to qualify to be put on the list. You will just need to provide your child’s name, birth date, and current contact information. Wait times currently are more than 10 years; do it today. Add your child to the MDCP list (https://www.dads.state.tx.us/services/faqs-fact/mdcp.html), the CLASS list (https://www.dads.state.tx.us/services/faqs-fact/class.html), and the HCS list (http://www.dads.state.tx.us/services/faqs-fact/hcs.html).
4. Enjoy your child. Hold him. Kiss him. He’s still your child and you’re still his parent. That hasn’t changed. Don’t allow a label or a diagnosis to change your heart for your child. There will be busy, serious times, but always take time to simply enjoy being a parent to your child. Today’s a great day to appreciate that. You’re about to embark on a journey together. Stop and savor this moment.
5. Keep in mind that your child is NOT his diagnosis. He is a kid first. As you consider activities, keep this in mind. You might be choosing therapies and other activities. Never limit your child to just the “special” programs for children with disabilities. Never limit your child to just the clinical therapy options. Since your child is first a child, don’t be afraid to explore activities at the local recreational center, the local dance studios, or the local sports leagues. Be free to be involved in all of these activities. They are for everyone.
6. Look up. Stay strong. You’ve got this.

Learn more about what to do once you receive a diagnosis for your child here.