So first, it wasn’t until starting THIS blog (I’ve had others on different topics) and getting together all the resources for PANS/PANDAS and ARFID, that I finally considered myself to be a “Special Needs Parent.”
My son doesn’t have the diagnoses that typically lead to the special needs designation. He’s not on the spectrum, even with suspicion and testing multiple times. He doesn’t have a diagnosis like cancer or muscular dystrophy. And there were even times when I would say things were at least 90% normal. Right now I can’t even imagine that, but I do remember.
My son is quite a smart kid. Sometimes too smart for his own good if you know what I mean. But because of that, school could be a nightmare. He needed accommodations just to tolerate physically being in the classroom. Too much sensory stimulation, loss of control of your own space in the environment, and the boredom that comes from being a smart kid and finishing your work in a quarter of the time that it takes the rest of the class. All this led to increased anxiety, and frustration and then decreased his drive to initiate and succeed. So much of this was improved when we switched to a Montessori school.
Before he was 14 years old he didn’t have any diagnosis. We were only putting out fires as they came up. Without a diagnosis, some things are really impossible to make happen. The public school system treated his issues as behaviors that just needed to be disciplined and corrected. If I only knew then what I know now…
Then dealing with people outside my immediate household.
Some were great. Some, well, not so much.
I have friends and family who would go to the ends of the earth for us. And for them, I am eternally grateful. They would ask questions about his condition, how they could help, or just inquire about how everyone is coping. Really, that’s the best response to help when you don’t really know what to say.
But then there are those who are not at all familiar with PANS or ARFID and make comments like, “I wish I didn’t want to eat and lost all that weight.” My response to that person was “You know this is a life-threatening condition right?”
Even worse were those who just give lots of advice even though they are not willing to learn about the condition. Despite dealing with this from toddler age through now at age 20, I am still getting messages like “maybe just get him to drink a nutrition shake and hide stuff in it.” In 2020 he was eating only one brand specific thing. There was no other food he was willing to cross his lips no matter what. And I had tried every trick in the book for those 19 years. When I get advice like “you should just get him to drink a protein shake,” or “just make a smoothie and hide stuff in it,” I politely say that he won’t drink those. Then they get mad because I am not willing to try their ideas. I try to educate them on the disorder, but the response continues to be more basic parenting advice. It makes me very frustrated and I have to do what I have to do so that the “helpfulness” is discontinued.
Then there are the medical professionals who only have a vague idea about the diagnosis or even deny it is a real condition. His pediatrician had no awareness of feeding and eating issues. Again, just the basic parenting advice of “Kids won’t starve themselves.” Ugh…
The problem with many professionals we have encountered spans a spectrum of special needs dysfunction. That is that they either lack knowledge in this particular area (PANS/ARFID/Mental health in general), refuse to accept new information to fill in the knowledge gap, or deny the very existence of these disorders and ultimately deny care.
Other well-meaning professionals give incorrect, outdated, or in some cases harmful advice. As parents of these kids, we have had to network and find providers who have experience and success in treating these outlier conditions. And when we find them, they either don’t take insurance so they are very expensive or their office is so overwhelmed that getting care when you need it is stressful.
I guess I haven’t really seen myself as a special needs parent until the last couple of years. My friends and their kids are graduating high school, looking at colleges, dating, and going on family vacations. We are doing none of those things.
In the past few weeks, I have had several comments saying what a great advocate I am for him or how strong of a parent I am. I truly appreciate being “seen.” Honestly, I am just doing what needs to be done. As parents, they have had different challenges than ours but very few had similar paths as special needs parents. It was then that I came to realize that I really am a “Special Needs Parent.”
That leads me to my own current issues. I work full time, am a single parent to a special needs adult child who cannot support himself, and have my own chronic health problems. I have not prioritized my own health issues and have attempted to keep myself going with experimenting. Trying supplements, meditation, and changing my food choices because I have no time to find my own “Team Stacy.”
I have also been protecting my son from any and all infections by being extremely careful myself. I have not gone out with friends much at all or participated in community events. But I do have a small group of people who know my whole story and support me when I call on them. They are definitely my tribe!
So the most simple advice I can give other special needs parents is to remember to:
ONE: Find your own support system.
TWO: Set boundaries for those who take away from your inner peace.
THREE: Make time for your own self care.
At the end of the day, you are your child’s best resource. You have put everything on hold for them. But no one can do it all.
You have my permission to set these three steps above all other things! This will give you the space, time, and patience to be everything your child needs.
