I also feel very alone; no one in my life that I have talked to has ever even heard of PDA let alone understands or can empathize. I read online somewhere that having a PDA kid is “like parenting on hard mode,” and I just feel like this is so freaking unfair.
Do you have any thoughts on this disorder? Or words of encouragement? I am in a place of real hopelessness at the moment.
Hopeless: I am so sorry for this disappointment and grief. I know (and many other parents do, too) the feeling of having the rug ripped out from under you with a diagnosis, whether psychological or physical. We all have dreams for our children, and it is natural to feel alone, scared and hopeless.
It is difficult to say a lot about a PDA diagnosis, because U.S. mental health professionals haven’t yet formally recognized it. Being given a diagnosis with little to no road map, unsurprisingly, leaves people feeling alone, frightened and hopeless. For instance, if your son had been given an autism spectrum disorder (ASD) diagnosis, there would be a couple of paths from which you could choose. There would be treatments like occupational, exercise and speech therapy, scripts, as well as groups of people who feel that ASD is simply another way the brain is made that doesn’t require any outside interventions. You could easily find a community of other parents whose 4-year-olds also have that diagnosis, and these parents could share stories of success, heartbreak and hope. You would find podcasts and books covering every conceivable facet of ASD, and you could begin to imagine a future where your son would thrive, despite the new challenges.
Instead, you have a diagnosis that isn’t official or recognized by the people in your life. And that, my friend, is heartbreakingly hard. Not only do you feel unsupported and unseen, but PDA has symptoms that are both physically and emotionally exhausting. One of the challenging aspects of parenting a child with PDA is that strategies that work with many children will not work with your child. Direct requests, commands, demands and even gentle asks will trigger the child’s demand avoidance. You need to remember: It’s not that the child “won’t” obey you, they can’t. Their mind and body are thrown into an anxiety loop that seeks and fights for control. This loop of anxiety-demand-defiance-more anxiety often creates more isolation as the parent doesn’t feel that they can go about their day “normally.”
You have every right to all of the emotions you have stated and, while you navigate this new challenge, I strongly suggest finding your own therapist who can help you grieve the life you thought you were going to have. Please find a therapist who doesn’t question this diagnosis or your parenting skills; you need empathic listening and support right now.
As you find your footing, you will begin to assemble your care team. I don’t know who diagnosed your son, but because PDA isn’t officially recognized, please try to get additional screening for your son. If your son’s behavior needs outside interventions, you will need to find that care team through the proper channels. If he hasn’t had a full neuropsychological test, please get one. They are costly but worth it, especially to establish a baseline by which you may measure later. Whatever you do, listen to your gut. If you feel like a professional doesn’t believe you or isn’t listening, find someone else.
It is tempting to believe that your son will never have a “normal” life, but this isn’t true. There are many ways to help him grow and develop; it is just going to be a winding path to get there. Changing your lens from “my son will never have a normal childhood or life” to “we have a child who has specific needs we will all learn to meet” is the difference between this diagnosis being a terrible obstacle or not. He is young and capable of change. This doesn’t change how hard it will be, how many stumbling blocks you will encounter or how judged, lonely and worried you may feel, but there is a future for your son.
When you are ready, please look for parent groups with young PDA-diagnosed children. From finding therapists, developmental pediatricians, specialized schools and child care, your main need right now is community. Everything, everything, can be faced when surrounded by loving people who get it. Yes, you may have never chosen this for your family, but by finding others who get it, your compassion and open-mindedness for all of humanity will grow exponentially. Lastly, pick up the books by Mona Delahooke to understand the nervous system, and keep up with Ross Greene’s work with explosive children. I also love this podcast with Holly Moses. You can do this. Good luck.
