This is something that has been on my mind for months to share with you. Not really sure why it took me so long, but this is advice I really could have used along my journey. If I would have had a mentor when I was still trying to figure this mess out, my learning curve would have been much shorter. But you don’t know what you don’t know and that’s why I want to talk to you about this today.
So, who IS the best advocate for your child? You are. I know that probably seems like obvious and lame advice but it’s not. If I would have known 9 years ago that just because you want help for your child doesn’t mean you will receive it, I would have made some different decisions. The cold, hard truth is that a fairy is not going to show up and fix anything for you. You may encounter resistance from doctors (like I did), have really mediocre treatment that isn’t giving you the answers you’re seeking, or want to approach a treatment plan that incorporates as many alternative methods as possible. Bottom line, you need to find a professional that will respect you and work with you, with an open mind.
One thing that may serve as an advocate and be tremendously helpful is a pediatric or youth behavioral therapy program in your local area. I have come to love and appreciate the hard work these clinicians in the field do. It took some time for us to move through the waiting list, but it was a piece of help we didn’t have before. And it’s important to know there are different levels of behavioral health programs (because nobody told me that!) While you will have to start at the bottom most likely, if it’s not intensive enough or helping, express that and ask what other services they can refer you to.
We started out with a program that was very limited and wasn’t helpful at all. It was based around us spending more time together as motivation for my daughter to behave better. This did not work as my daughter’s behaviors were not a result of her circumstances or environment. We then were able to get a referral to a community based program that was a little more intensive. That was a wonderful experience and put more focus on the child setting appropriate goals with accountability, and communication between the clinician and parents as well as school. While helpful, it was limited and more based around troubled youth. We eventually were given a referral to an intensive behavioral health program that has helped tremendously.
If you are on this journey right now, you need to know it could be a bumpy one. Put your Advocate hat on. ADHD, neurological disorders and youth behavioral issues are on the rise in America. I think in most cases pediatricians are more than willing to give you a referral to the appropriate specialist. And while I have so many gripes about how the American healthcare system is run, it has to be taxing for pediatricians to feel like they need to keep up with all the things that are becoming quite common with our kids. While I believe doctors genuinely care and want to help, don’t take specialized advice or medication for situations that need a specialist.
I’ll give you a great example: When I finally switched pediatricians to start getting one of my daughters the help she desperately needed with her challenging behaviors, I was referred to a Doctor who knew all too well what it was like living with a child that had horrific mood swings and unmanageable behavior. While he did refer us to a psychologist and a behavioral therapist, he also wrote a prescription for an antipsychotic, Risperdal. I was way beyond the end of my rope with her behaviors. It was tearing our household apart, literally. She damaged property, bullied her siblings and was downright defiant. So I filled that script.
The mistake I made was waiting until things got bad to find a new pediatrician, and get outside referrals. I was complacent; in part because I really started to internalize stuff outsiders said to me. Like “your child just needs to be loved, spend more time with her” or “your child is broken” or “she’s a really ungrateful, bad child, don’t you ever discipline her?” And a part of me believed that she knew exactly what she was doing, and was in control of her decisions. It must have been something I had done. But she had deficiencies and reduced reasoning mechanisms. So by the time I got referrals, things had gotten really bad. And since I believe the Risperdal triggered her Type 1 Diabetes a year later, I wish I would have seen a Psychologist who maybe would have recommended something different. Our pediatrician had experience- real life experience with kids with mood disorders. But each person is individual and their symptoms/causes unique. Simply put, a specialist is more qualified to do a full work up and diagnosis so you can start talking about treatment plans that are more specific to your child’s unique situation and health background.
If I could do it all over, I would never have listened to what her first Pediatricians said. I would have switched doctors sooner. Deep down, I knew that something was wrong. Even when I felt like she was making a bad choice, I could see that she was irrational. She wasn’t working with the same perception as the rest of us, so often the things she said or demanded were irrational. This is where I could have used an advocate or mentor to tell me that I needed to trust my intuition and push forward. A mom who had been where I was and knew how I could better navigate our messy mental health system. This was back in the day when I didn’t question many things. I had a mindset I no longer recognize today.
If you take anything away from my experiences today, I want it to be these 5 things:
1.) You are your child’s BEST advocate. Never forget that.
2.) Seek help, don’t wait.
3.) Ask questions. You have options, but you have to ask for them.
4.) Don’t be afraid to communicate what you want to incorporate into a treatment plan. If you’re not being heard, consider finding another specialist.
5.) Do your own research.
Nobody will care about the outcome of your child more than you. And while Doctors may aid in diagnosing your child, they are often wrong or miss things. If you rely on ‘the system’ to do all the work for you, you’re in for a bumpy ride. Log behaviors, diet and sleep patterns. Do research. Ask questions. This can save you a lot of frustration and time in putting your child on a path for success in life. You have been entrusted with this little soul so take the wheel Mama and advocate!