While every PANDAS/PANS family experiences this medical condition differently, there are many familiar aspects that we all share. One of those things we share is how difficult it seems to be for anybody to actually see what PANDAS/PANS is doing to our kids and to our families.
There is a kind of blindness when it comes to others seeing and acknowledging the effects of PANDAS/PANS. People see the symptoms of OCD, tics, anxiety, sensory problems, rages, etc… as things our kids misbehaving versus them being things PANDAS/PANS kids cannot control. Pediatricians and nurses may not see that your child has PANDAS/PANS, so you have to go to a specialist that can see the big picture to get a diagnosis. Your child’s school may not see how hard your child is trying in class, but instead, they focus on your child’s bad behaviors. Doubting family members can’t see what you’re facing and think you’re in denial of bigger problems, as if PANDAS/PANS isn’t HUGE. And there are friends that just won’t see us at all anymore because we’re too depressing to be around now.
Watching people NOT see what is happening to our kids and our families is so frustrating. One PANDAS Mom, Deanna Nichols, wrote about this very thing in a Facebook group. She agreed to share Her Words here with you in this guest blog post. I think many of you will feel as if you could have written every bit of this. I know there have definitely been times that I could have.
That Boy, Do You See Him?
That boy, do you see him? No, really look…do you see him? His eyes are wide as saucers, his hair is disheveled. He’s hiding in the corner. His response is just a murmur of a word; anger and frustration mumbled from his lips. He runs, he hides, he hits…he seems so angry and defiant. That boy? Why does he act like that? Why can’t he control himself? You look at him with frustration. You say to him “I know you can control yourself”, ” I know you’re being bad”, “your mom will be so mad”, “I’m calling your mom”, “you can’t stay at school and act that way”, “You were good yesterday, what’s your problem today?”
Look at that boy, that boy that angers you so…look at him from my eyes. See him from the heart…just for a second…look at him with me. Those eyes, they were once filled with wonder and joy. Those lips are his mom’s and that nose is his dad’s. His heart carries a kindness I’ve never seen before. He’s smart beyond his years. He reads at a fourth-grade level but is only in second. He used to ask questions about life versus toys. His wonder and amazement of the world have always been beyond his years, but he still asked…he still wonders. Inquisitive, empathetic, and caring.
Look at him, please…look at him like I do. He crawled at month 4, and by month 5, he was scouring furniture. By age 2 he was having conversations as if he were an adult. In preschool, he was top of his class. He’s special in so many ways.
Stop…just stop…. Look at him…really look at him. Before he got sick, he was a free soul. The world was his for the taking. I had dreams of his future, and they were so bright. He was going to cure cancer, be the cause of world peace, solve global warming. Look….look into his eyes. Beyond his fear and anxiety is an AMAZING boy…see him..really see him…see him with me. As a mom I’m asking, no I’m down on my knees and I’m begging…I’m screaming from the rooftops…I’m crying.
Look at him…just look at him…through my eyes, for one minute, just see what I see. See a boy whose brain is on fire, see a boy who needs your compassion vs your criticism, see a boy who needs your hand for guidance, not punishment. See a boy who needs you to hold him to hug him, to love him. See a boy who needs you on his side. Fight with me, fight for me, fight for him. He needs it, he deserves it. This disease isn’t a choice, this disease wasn’t something he ordered at the drive-through at McDonald’s. This disease…it’s killing his soft soul slowly day by day. It’s breaking him, it’s breaking me. I try to stay strong. I try to fight, but some days are so hard, some days are so exhausting. Begging and pleading doctors and schools has become a full-time job. Walking on eggshells to reduce triggers and anxiety has become second nature in my home. Missed school days, doctor appointments, hospital visits, lab work…that’s my life.
So do me a favor…. The next time you see MY boy…look at him, really look at him. Look beyond his anxiety, aggression, and fears. Look at him like I do. Be the difference he needs, be the mentor he deserves, be the rock that changes his future. Look at him, really look into those fearful eyes, see him like I do…look at my boy, NO! STOP! LOOK! look at my beautiful survivor. See him through my eyes…love him from my heart…please, please, please, really see my BOY!
~Deanna Nichols, PANDAS Mom
Thank you Deanna. You put into words what so many of us have wanted to scream to so many people. Our PANDAS/PANS kids are sick, and we need other people to SEE that . We also need compassion and help from other people…not criticisms. It’s easy to judge us for how our children act or to pretend that we are just making excuses for their bad behavior. You think we don’t know what we’re doing and that we’re bad parents.
The truth is that you don’t know what you’re doing when you refuse to see PANDAS/PANS. You ought to hear the multiple excuses we make for friends, family, teachers and doctors that don’t come to our aid to help our sick kids. Yes, we know you don’t know what we’re going through…and we hope you never do. But please know that if by some chance your child does get sick with PANDAS or PANS, we’ll help you. That’s what we do because we’ve seen this before…in our own families and in our own mirrors. We help others because we know what it’s like to hurt so much, and we don’t like to see others in so much pain.
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Sarah Jane Alleman is a PANDAS Mom to her awesome son, Jesse. She spends much of her time on Facebook, making to-do lists, and listening to music, especially Depeche Mode. She drinks a lot of coffee, likes a good red wine, and has been known to hide chocolate in her pantry. Sarah really thinks PANDAS Sucks (the autoimmune disorder, NOT the bears!). PANDAS Sucks exists to tell the collective story about PANDAS/PANS. Sarah wants to empower other PANDAS Parents and let them know they’re not alone. She is also the Director of Kentucky PANDAS/PANS Support, which strives for more awareness, support, and understanding of PANDAS/PANS. Sarah was a Parent Contributor to the book “PANDAS and PANS in School Settings” and a volunteer and technical adviser for the PANDAS/PANS documentary “My Kid Is Not Crazy.” Find PANDAS Sucks on Facebook, Instagram, Twitter, and Pinterest.
Note: Please do not ask for doctor referrals or specific medical advice. This blog/web site is for info and support purposes only. I’m not a doctor.