If you’re the parent of a special needs child, you’ve been there. I know I’ve been there. Where’s there? You are sitting in the office – could be a doctor, a psychologist, a speech therapist, an endocrinologist, whatever, it’s an office. And you’re sitting there. You have a feeling you know what’s coming, but nobody has said it yet, so it’s not real yet.
The specialist sits down with that stack of papers and starts making the small talk they make to ease you into the conversation. You smile and nod politely, waiting. Willing them to skip ahead. And then they say it, the label that makes your stomach drop. Yes, you knew it was a possibility, that’s why you’re sitting there, but it wasn’t real before.
You still had that hope you’d hear that you were wrong, that they were wrong, that everything was fine. The label may vary from child to child: autism, ADHD, cognitive delay, diabetes, the list goes on. But the feeling in your stomach is the same. The numbness that spreads throughout your whole body is the same. And the background buzz as the doctor keeps talking but you don’t hear another word is the same.
You leave and drive home, your mind both racing and completely numb. You go through your child’s routine. Dinner, bath, bedtime. And then you sit on the couch and google search and text your friends and try to process what you’ve just heard and no matter what you think you keep coming back to the same question:
“What do I do now?”
If this scenario sounds familiar, know you’re not alone. Know that parents have been walking this path for years before you and more will walk it for years after you. Over the past twenty years, I’ve been on every side of the process. I’ve been the mom in the office. I’ve been the specialist giving the diagnosis.
I’ve been the creator of the website a parent reads. I’ve been the friend or relative on the other side of that panicked text. And just know no matter what diagnosis you’ve just heard, there is a way to figure out what you do next. Although the specifics may vary from family to family, the process I’ll share here is one that I’ve found helpful for huge numbers of families for over 20 years.
Step 1: Get high quality information
As soon you hear the diagnosis, you want to pick up your phone and start googling. Don’t. Seriously, don’t. The internet is amazing but it’s full of misinformation that will drive you insane. Begin by finding trusting websites and resources and using those to build your information. Most diagnoses have a non-profit that is reputable – start by looking at those sites: American Heart Association, Autism Society of America, etc.
Search reputable medical sites as well. The Mayo Clinic, National Institute of Health, your local children’s hospital. These sites generally have information and links that are trustworthy and will keep you informed. Check out books they suggest or websites they recommend.
Step 2: Identify your key goals
Once you have done some reading, you’ll start to get a sense of the most common difficulties associated with your child’s diagnosis. Do kids with this diagnosis often struggle with language development? Do they have poor motor (movement) skills? Do they struggle in school? Do they struggle with maintaining a healthy weight? Then, consider the common issues you just read about in relation to your child. It may be that 90% of kids with this diagnosis have language delays, but your child could be one of the 10% who doesn’t! Based on your child’s personal profile and the issues that tend to be related to your child’s diagnosis, create a list of goals.
Your list may include resources, assessments to get, specific treatment goals, or just information to gather. A sample key goal list might look like this:
- Get a speech therapy assessment
- Reduce aggression
- Work on toilet training
- Learn about occupational therapy
- Learn about legal rights related to school system
Step 3: Build your support system
Once you know what your goals are, begin thinking about what you’ll need to put into place to make these things happen. If you know your child needs to go to physical therapy once per week, but you can’t miss work more than twice per month, lean on your support system. Do you have a friend who can cover some days if you agree to get her kid off the bus the days you’re home early? Do you have a relative who can watch your younger children when you take the older one for a doctor’s appointment? Start writing a list of what you’ll need and write a list of who you know. Then cross-check to see who can help you out.
Although it feels daunting to ask for help, keep in mind there’s a decent chance people are already offering. Did your neighbor say, “I heard about your son, let me know if there’s anything I can do?” Did your office mate say, “Hey, I just heard – what can I do?” Did you smile, thank them, and assure them you’re fine? Well, call them back up! Take them up on their offers. Use your community!
If you don’t have any support system to help with the day to day tasks, don’t panic. There are still options. Look into treatments that come to you or your child’s school. If your child is 0-3, your state’s early intervention services may come to you. If your child is 3 or older, your local school should be providing services. You can often get treatment right where your child already is spending his or her time! Build in time to chat with a friend by phone or skype, so you can vent or brainstorm or whatever you need. Join a parent group for your child’s diagnosis and build a new support system!
Step 4: Identify effective providers
To move forward, you’ll need to decide who to take your child to see. The choices can be overwhelming and it feels impossible to know where to start. Reach out to the local chapter of whatever support group most closely links to your child’s diagnosis. They likely have a Facebook page.
If you’re not sure who that is, call your children’s hospital and ask for resources – they likely have a resource library or a flyer of referral sources they can share. Once you find your people, ask questions. Ask which doctor people like. Ask which occupational therapist addresses the specific concern you have. Although you’ll get conflicting answers, see which providers names come up often. Then, if insurance is a factor, cross-check those names with your coverage and set up your appointments. Trust your gut. If you don’t feel like someone’s a good fit, even if they get rave reviews, they’re not a good fit. Call the next name on your list.
Once you have providers, consider creating a care notebook to keep track of all of your child’s providers, goals, and progress. Learn more about how to do that here.
Step 5: Evaluate treatments and re-group
After a few months of treatment, check in with your providers. Make sure your child is getting what you want out of every single treatment. Therapists, doctors, specialists not only cost money, but they use up your time and energy as well. You want to ensure that your child is getting everything he or she needs, and part of that is ensuring each treatment is worth the time, energy, and money you’re expending on it. Hold your providers accountable. Ask to see evidence of your child’s progress. Ask what their next goals are for your child and ensure their goals match your goals.
If your child has met all the goals, discontinue treatment. If your child is making progress, keep working on meeting the remaining goals. If your child isn’t making any progress at all, discuss how things will change. Will the provider change the approach? Is there something you can do at home? Do you need to switch providers? Frequent goals checks not only help ensure your child makes gains, but they help keep you informed so you can be the best possible parent for your child.
If you have a provider you don’t actually see in person (e.g., they come to your child’s school, your mother takes your child to appointments, etc.), consider creating a communication notebook so you know what’s going on. Communication notebooks are often used by parents and schools to communicate, but they can be used with any provider if they’re modified. To learn more about creating a communication notebook, check out this post.
Getting a new diagnosis is overwhelming. It’s scary and earth-shattering and makes you feel helpless and powerless. Although it can take time to regroup and move forward, know that you can do it! Although, knowing what to do next can be stressful when your mind is still reeling from the news, keep in mind that people have walked this path before and there is support available to you. By breaking your next moves into 5 steps and methodically moving forward, you’ll find you can handle more than you ever thought possible! Remember, 5 simple steps can make you feel like you’ve got a handle on things even if you feel like nothing will ever be the same again right now. In case it helps to have them all in one place, I’ve rewritten your steps below all together. Your steps are:
- Get high quality information
- Identify your key goals
- Build your support system
- Identify effective providers
- Evaluate treatments and re-group
Remember, you’ve got this! Have faith in your instincts and trust yourself!
This article is written by Stacie Pozdol, M.S., LMHC, a licensed, masters-level therapist with 20 years’ experience working with individuals with developmental and behavioral needs.
Stacie graduated from Vanderbilt University with a master’s in Clinical Psychology. Since graduating, Stacie has worked in a variety of settings, including two top children’s hospitals and as part of her state’s early intervention program.
She has experience providing individual, group, and family therapy to individuals with a variety of diagnoses, including ADHD, anxiety, Autism Spectrum Disorder, speech delay, Down syndrome, and developmental delay. She has also been published multiple times and has presented at conferences throughout the country.
Stacie currently lives in Indianapolis with her husband her two children.
Visit Stacie’s blog: The Behavior Buzz to learn more about her.