This week has been filled with lots of phone calls with friends dealing with all sorts of medical and behavioral issues with their kids. I love to brainstorm with my friends for their kids and I am grateful when they do the same for me. One theme over the years that keeps surfacing is the conflict between what an expert or so called expert tells you and reality. Growing up I always revered medical professionals and really professionals of all types as the ones who were in the know. I could not as a kid or even a young adult think that someone with a real degree, accomplished, could be wrong or not qualified to give an opinion, diagnosis, strategy. Autism. Once you hear that word, it’s a crap-shoot. This is not exactly a newsflash but I feel there is a really important lesson here that needs to be explored. And, it’s not limited to autism. Any medical/behavioral issue that your kid is facing has the potential to make you question everything.
So you take your kid to a doctor, a specialist, a clinician, a therapist. This person is often highly recommended by someone you trust, or they are referred to you for something so foreign to you, that any recommendation feels like a life-preserver. The problem is, they only get a glimpse of what you are dealing with or what you see on a day-to-day basis. We have been to many of these types of appointments for both boys over the years. The problem is that as a parent, and now I may take some flak for this, as the mom, somewhere in between your brain, heart and gut things seem off. I love examples, so here goes:
- You go to the psychologist to deal with behavioral issues. For Bryan it can be the constant anxiety and talking. He is forever asking “are you happy?” and says Mom about a thousand times an hour. Psychologist says, I think you will have to start ignoring him. Sounds like an easy fix, right? Just let the kid talk and go about your business, after a while, he will stop if you are not paying attention to him. Oh ok, doc. Here is my response: we have a guest room, please come stay the weekend and show me how you would display this ignoring behavior. Or better yet, come and just spend the evening, I super duper triple dare you. I say it can be done for a short time, but no one can sustain that kind of ignoring. So while very good and easy clinical advice, the practical application is far from practical.
- You decide to get a second opinion. It’s something important, something that is nagging at you that you want to have double checked. Typically this could involve a neurologist, a psychiatrist, some sort of MD. You go for peace of mind but you leave with very few pieces of your mind. They want more tests some invasive, some not so much, and they completely discount the previous doctors diagnosis/thoughts. What do you do? Where is the quarterback for your team telling you how to run this play? What’s the next move? Was the previous doctor an idiot? How do you know?
- You decide to come up with some strategy to help you cope with a bad behavior. You know it may only be a band-aid, but band-aids are a pretty reliable product. You speak to a clinician who tells you that this is going to help you now, but may be more of a problem later. You shake your head and again invite this person to spend the weekend.
So really, what’s the point of this? Why am I telling you about this stuff? I’m going to tell you. You, the parent, the mom, you are the one who knows. Trust your gut!! Trust the parent/mommy instincts that got you this far. If something a professional tells you sounds too theoretical, too impractical, too difficult, say thanks and move on. We all expect too much. As a parent of a child with autism they want you to come home after work, spend quality time with your kid practicing use of language, do some sensory exercises and, oh yeah, my personal favorite, limit their use of electronics. All day long the kid was receiving behavioral incentives in the form of electronics and then you get home and tell him he can only use it for 30 mins. Good f-g luck to you. The point is being a parent is a lot more about loving and accepting your kid, in my opinion, than being his or her doctor, therapist, etc. Your kid is just happy to have your attention, being together and just sharing any activity is more important than the activity itself. I find my boys are really happy when we are driving. They know that I Iove my new car and I find if I am singing, yes singing, they know I’m happy. Jason will spontaneously say,”Mom I love you” when he hears me singing. It’s not because I have a great voice, it’s just that he can hear the happiness.
So for some of the heavy duty medical stuff, I say get a few opinions but remember they don’t know all. Anyone that is dismissive of your opinion or condescending needs to be called out on it or immediately discounted. Remember anyone can go to school to learn something, but no one knows your kid better than you.