Most parents struggle at some point with worries about their children, wondering whether they’re parenting “right,” and trying to figure out whether they’re missing something. But for many parents, the worries go beyond standard concerns.
Parents with children who may have a medical, psychological or educational difficulty that needs to be diagnosed can spend endless hours struggling with their worry and fear. And as rough as those days and nights of worry may be, nothing is harder than the moment when those fears are confirmed.
Trust me—I’ve been there.
I remember sitting in the room, trying to will the professional in front of me to say I was wrong. Trying to somehow wish hard enough that they would tell me my child was completely fine. And I remember the absolute shock when they gave me the diagnosis. Of course I’d known it was a possibility, but “possible” was so very different from real. I remember them talking about our next steps, how we would move forward, but I couldn’t recall a single word of it once I left that room. I’d been in such shock, I apparently hadn’t processed anything they’d said after they confirmed the diagnosis.
In addition to being the parent of a child with a diagnosis, I’ve also been the medical professional giving the diagnosis, and I’ve even been the therapist parents sought out for treatment after getting a diagnosis.
After being on every side of the process, I’ve learned a few must-do steps that families should follow after getting a medical, psychological or educational diagnosis for a child.
1. Build your community
Having a child with extra needs isn’t always easy, but it becomes exponentially more manageable when you realize you don’t have to do it all by yourself. The first thing you need to do is build up your community, which will look different for every family. It could include family, friends, neighbors, or even new people you’ll meet along this journey.
When you get a diagnosis for your child, you’ll often find people will offer to help, telling you to let them know if you need anything. These people are offering to be in your community, so take them up on it. Yes, it might feel weird at first, but let them help. Take a few minutes and make a list of tasks you could use help with, and then whenever someone says, “Let me know if you need anything!” give them something off that list. Maybe they can run carpool for your other children from a joint activity.
Maybe they can grab dinner for you from the neighborhood restaurant. Maybe they can take your dog for a walk. Whatever you need, when people offer, take them up on it.
If you have family or close friends in town, remember it’s okay to ask them for help. The people who love you are usually more than willing to help if you let them know you need it. If your loved ones live further away, think about how they can support you long distance. Maybe you can schedule some virtual chats to vent or they can order something you need and have it shipped to you.
If you don’t have support people in mind, then it’s time to build up your community. Join support groups (in person or on social media) and get to know the other parents raising kids like yours. They’ll be an amazing source of emotional support and can give you ideas for great resources including therapists and doctors.
2. Set treatment goals
Most children with diagnoses require some form of extra treatment, whether that’s therapy, tutoring, or behavioral support. You’ll likely hear about a lot of available treatments and options—rather than get overwhelmed trying to do it all, it helps to identify your goals in advance. The reality is time and money are not unlimited, and you’ll need to figure out the best use of your resources.
Start by identifying the primary goals you’ll want to address, then prioritize that list. Not every child with a particular diagnosis is the same, so just because “most” kids with your child’s diagnosis work on a specific skill, it doesn’t mean your child will, or must. For example, many kids with autism go to occupational therapy, but not all. Identify the priority areas where your child needs to build skills or get treatment, and focus on those. Maybe your child needs help with feeding, toileting and walking. Or, they might need tutoring in every subject—start by identifying which is the most critical.
3. Learn the reputable resources
As you begin talking to other people and researching treatments for your child’s goals, you’ll come across a lot of information. It’s essential you learn how to distinguish reputable information from information that may be somewhat less trustworthy.
How do you figure out what’s reputable? Begin by asking the professionals who diagnosed your child for a list of resources and places to start your search. Most diagnoses have national organizations that are reputable, places like American Heart Association and Autism Society of America. These sites will often connect you to other resources and guides so you can begin to learn which local resources are reputable, which authors to read and which treatments to prioritize. When someone tells you about a new treatment, be sure to check with these reputable resources before jumping in.
4. Give yourself a break
Finally, remember to be kind to yourself. Parenting is hard for everyone. When you add a child with extra needs into the mix, it can feel like it’s complicating fast.
Remind yourself it’s okay not to know everything about your child’s diagnosis—that’s why you seek out professionals. It’s okay not to spend every moment skill-building with your child—you’re a parent and you need to take time to enjoy your child, too! Realize you’re going to make mistakes—all parents do. Your child will still love you and, one day, will appreciate all you’ve done. Build in mental health breaks for yourself, including time with friends and loved ones to decompress and relax. Allow yourself the space to be human.
Finding out your child has a diagnosis can be overwhelming and scary. No matter what the diagnosis is, remember that people have walked this path before you, and they can guide you along the way. Seek out help, identify your priorities, find out who to trust and give yourself credit for all you’re doing. You’re doing a better job than you think, mama. I promise.