As a behavioral health professional and a mom of a teenager with Autism and Tourette Syndrome, I thought I was equipped to manage my son’s mental and behavioral health challenges. We were already on a waitlist to get him the help he needed and were participating in many services, but then the pandemic happened. School moved online, in-person support services were no longer available and our routine was upended. Both of us were struggling and things reached a breaking point. I want to share our story with other families to assure parents and caregivers it’s more than okay to ask for help. It’s caring and courageous.
Please know I have my son’s permission to share his experience. We both decided we wanted to talk about our journey of finding mental and behavioral support with the hopes our story could help someone else.
How I knew it was time to get help
My son, Russell, is the sweetest kid you will ever meet. He loves to laugh. He is 15 years old and already taller than me! And he has a beard now. Russell has also been living with a developmental disability, behavior disorder and a neurological condition. I had become accustomed to his typical moods, behaviors, needs and ways of relating with me and with the world around him. There may be challenges day to day, but they felt like challenges we could meet, together, with the tools we had.
Then, I sensed a shift. Here’s where I learned to pay attention even more. For some kids, it might be that they are sleeping more or less than usual or getting out of their supportive routine. It could be their behavior has turned aggressive or violent. For me, I knew I needed help when I could no longer manage my son’s violent behaviors. For you, it might be something else. If you have a hunch that something is changing with your kid, stay curious and observant. Taking notes about the time of day or other circumstances around when your child is at their worst can be very helpful in mitigating the situation in the future.
The other type of struggle I didn’t expect
I was already dealing with a daily crisis and knew I needed to find professionals to help me and Russell. That was the struggle we already knew. Then, in trying to find him help, there was a new type of struggle I discovered.
Finding the right care and getting him in therapy was a struggle I didn’t expect. The other was dealing with insurance. Unfortunately, there is more need for treatment than there are available places. We faced an 8-month wait before Russell could get into his residential treatment program. I also remember the long phone calls, frustration and many documents I sent to insurance to make sure his stay would be covered.
I would share the very long list of personal sacrifices we made or the many lessons we learned through this part of the process, but I know everyone’s situation is different. What I will share is encouragement for you to keep fighting for your child. This part of the journey may not be the smoothest, but it is worth it.
How getting help benefited our whole family
When I made the decision to enroll my son in a residential treatment program for teens, it wasn’t without a complicated mix of emotions. With this type of treatment, he would live at the therapy facility with other kids going through similar struggles. At first, I felt disappointed that I couldn’t meet his needs by myself. I felt sad I wouldn’t be seeing him every day and didn’t know when he would be able to come home. I also felt relieved he would finally be getting the expert help and support needed to meet his treatment goals and make strides in behavioral change.
So, it was the right thing for our family. Russell was able to get the help he needed, learned new skills and was able to discharge and return home to us. The thing that has made all the difficult emotions and experiences worth it, is knowing how much getting help has improved my son’s life and our relationship. Russell has built friendships with other kids who are autistic or have Tourette Syndrome and that has made him feel understood. He has developed coping skills and confidence that he wouldn’t have without the program. He also learned to take responsibility for his actions and reactions. One piece of advice he would give to other kids in his situation is, “Do the work. How long you are there is entirely up to you. There’s no time limit. You are there until you can show that you have learned what you need to learn to be a better person.” He is very proud of all he has accomplished and isn’t ashamed for others to know how hard he had to work to get where he is now. I feel grateful every day for the progress he has made.
Things that would have set off negative behaviors prior to the program now might upset him but he can self-regulate in a healthy way. I am glad to share our family’s story not because we have it all figured out, but because we know how much better things can be when we ask for the help we need.
Getting help for Russell also came with services for me as a parent, too. I have accessed respite services, which give parents a break to avoid caregiver burnout. I have joined parent support groups, which can help parents know they’re not alone. I have participated in family therapy, which strengthens communication and gives parents tools to effectively relate to their children.
Communication tips I’ve learned
With help, and through trial and error, my son and I have learned how to interact with each other for the best outcomes. Hopefully, some of our approaches can help you, too.
Tips for parents
Write things down instead of expecting kids to remember tasks or expectations. It’s more accessible for them, easier to remember and you don't have to nag.
Ask questions about their needs in the moment, like “Are you ready to talk now, or do you need space?” “Would it be helpful if you have a snack, take a nap, spend some time outside before we talk?”
Simplify instructions and all communication. Don’t get too wordy.
Use shared hand signals to communicate. If my son is talking at a high volume, I use my hand to indicate “lower volume, please” instead of interrupting him verbally, which can be a trigger for him.
Tips for kids and adults
Take a deep breath if you get frustrated in communicating.
Use a mood scale 1-10 to quickly communicate how you are feeling in a given moment.
Self-care tips for caregivers
Self-care is a hot topic for a reason. I’ve learned it really is an essential part of staying healthy as a parent and caregiver. What that looks like is different for each person, but these are some simple ways I fill up my own cup so I can be the best mom I can be.
Get moving. I walk outside with a friend over my lunch hour (we call it “walk therapy”) and it really gives me a stress-relieving boost in the middle of the day.
Surround yourself with people who “get it.” It is vital to have friends who listen well and don’t try to fix things. It is also helpful to connect with parents who share your experiences. Try in person or online support groups.
Shake off well-meaning advice. Some people will always have a remedy or a tip for you even when you’ve tried everything out there. Accept their compulsion to “help” is about them and not about you or your family.
Take breaks. I rely on respite services to give me a breather when needed. You may have another caregiver who will tag in so you can tag out. Whatever it takes, those breaks are important.
I don’t want this to read like the process was easy for us, because it wasn’t. Every step was hard and there were many, many sacrifices. There were days of fear, agony, heartache and all the emotions you feel when you see a loved one unhappy. There is still a lot of work we will continue to do, but I am so happy to have my 15-year-old baby boy back home with me and hear his laugh every day again.