I’m standing still, alone on the black top of an empty street. A single lamp overhead casts a sepia tone through the dense fog settling in around me. My eyes look slowly from side to side as I try to make sense of the quiet, peaceful calm I feel despite the horrific awareness that my child has died. The surreal feelings remain as I roll over and spoon his little body next to me in bed, relieved that it was only a dream. And it occurs to me for the first time that perhaps I’m a hospice social worker to prepare myself for this potential nightmare. Multiple times a week my patients tearfully share with me about the child who proceeded them in death. It’s more common than I ever knew.
I’ve been laying low since we got the results of my son’s last EEG this past February. I was in the throes of an epic IEP battle when they finally came in, and the combination of badness was just too much. Despite 2 solid years of no visible seizures, his EEG was NOT clean. While no seizure activity was captured, “rare epileptiform discharges” were found at night - when he is at risk of SUDEP. The neurology nurse e-mailed the eptologist’s report to me only after I specifically requested the results that my unprompted pediatrician was kind enough to let me know were in. “E-mail us back if you have any questions,” was her only note. Our neurologist never bothered to call, the obvious implication being that weaning his medication is off the table and that he doesn’t have anything else to offer - not even courtesy.
I am both completely devastated and relieved at the same time. I was too afraid to wean anyway and had pretty much decided not to, regardless of what the results were. But Doose Syndrome reportedly has a good chance of spontaneous remission. How could I not be hopeful? I wondered if Epilepsy read my last post and did this just to be the dick that it is.
F*** you Epilepsy. And F*** YOU to everyone who has made the past 5 years extra hard. You know who you are.
- If I had taken the neurologist’s offer, my son would be on multiple pharmaceuticals that have a 95% chance of NOT stopping his daily seizures. He would still be in a helmet, suffering multiple negative side effects, still seizing. Still waiting for Epidiolex.
- If I had taken the behavioral health department’s offer, my son would still be a sad, angry child. Raging, demanding and tantruming all day, every day, because he doesn’t have the autism diagnosis required to receive the ABA therapy his neuropsychologist recommended.
- If I had taken the Regional Center’s offer, he wouldn’t even be their client.
- If I had taken the school’s offer, he would still be grossly underserved while treading water academically at a kindergarten level, even though he is starting 3rd grade in the fall. And a brilliant boy.
It is mind-blowing and heart-breaking that almost every single professional I initially trusted with my sick child not only did NOT help, but made his condition worse and my life harder.
DON’T TAKE THEIR OFFERS. Your child deserves so much more, so much better than the bottom of the barrel that has become our culture’s pathetic baseline.
Be THAT MOM. Dig deep. Aim high. Fight hard. Don’t be intimidated by their fancy degrees or limit yourself to their discouraging research. You don’t have to be a scientist to heal your child - you are more. You are a mother. Be open. Believe in miracles. Trust your own intuition, observations and experience. It doesn’t need to be captured in a bell curve to work. If our kids fit into that curve, we wouldn’t be here to begin with.
When it comes to special needs parenting, those in authority do not necessarily hold the wisdom that counts - YOU do, other PARENTS do. Lean on and learn from each other. Listen and share what you know to work because you have seen it with your own eyes. Trust that every time you pull out your sword, you will grow stronger and become more formidable, less afraid. Your child will grow and become empowered with you, because of YOU.
Because I didn’t take their half-assed offers, my son’s seizures are well controlled by a high CBD oil produced and championed by other intelligent and tenacious parents. He gets 6 hours of in-home ABA therapy a week and is learning to CTFD. I have Regional Center support, including a dear respite worker that this mama desperately needed, and access to Medi-Cal and IHSS to supplement astronomical medical and caregiving costs. I have a passionate tutor who believes in my son and quickly proved the school so wrong that they eventually had to dramatically increase his services. I now have the child I knew was in there all along, who just needed the right kind of support to emerge.
I am tired and battle worn, but MY KID IS HAPPIER and so am I because I refused their offers - which is critical when you don’t know how many more days you’ll get to have.
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I love every single one of you who has held and helped us. You have made me stronger, my son healthier and our life easier. I also love you a lot Dr. Rossignol, for being one of the few professionals who has listened to me, empowered me, and actually helped my son without me having to get bat sh** crazy on your a**. Thank you, thank you for offering me Grace.
Allison that was amazing!!!! Soooo happy things are better!!! I had no idea. You are so inspiring and I admire you so much!!! Thank you for writing truth. So much truth in what so many don’t care about or see. Just incredible. Hopes, dreams, and wishes for optimal health and happiness!!
Ana Maria Abba says
Spot on as always. Just beautiful. So happy for Robbie and your family!
Allison Ray Benavides says
Dang I miss and love you sister xo
Rosemary (Biehl) Sutter says
God bless you, Allison.
Sorry to hear of your stressful/ongoing battles, but so glad to hear of your sons progress!!!
There are many amongst us who would give their right arm (and more) to get an EEG report with only “rare epileptiform activity”….
Allison Ray Benavides says
It’s so true Rosemary and I am not ungrateful.
This is beautiful and expresses what we feel! Your words are powerful and brought me to tears! Thank you for sharing.
i had no idea you were still going through this much with Robby. I feel so deeply for you as i have seen how hard this illness is on a family- my aunt had epilepsy and there were no treatment options for her in her days. You’re such an amazing mother! Seeing him thriving because of your care is inspirational.
Roslyn Rawlins says
My passionate friend and inspiration maker!
I hope your words empower others. This is a call to action! Just don’t take what they give you or deny you of!
I’ve spent the past decade pushing my fellow moms to not be afraid. To not fall in step. To not follow the rules. To fight! Don’t take no for an answer. Leave no stone left unturned. In fact, throw a few stones and break some glass ceilings! I have, and other moms, dads and caregivers can do the same.
Ryan was 12 years old when she had her 1st seizure of thousands of non stop daily seizures. They turned into continuous status epilepticus and she had debilitating adverse medication side effects. I immediately recognized the difference between good and bad, normal and bat shit crazy off the charts abnormally wrong.
I wanted my child back from the grips of evil. Day 1, I prayed. Day 2, I put on my armor and grabbed my weaponry. It was clear to me this was an epic battle of souls! I was protecting my child’s very essence and being. Fighting an evil of gargantuan size and power. Epilepsy is like a celestial black hole of darkness, that paradoxically and instantaneously leaches fear, doubt and disbelief. It always felt like the second you said the words seizures or epilepsy. The eyes of the person you were telling would go blank, dark and they either became mute or say some ridiculously stupid and hurtful thing. You know that look. You’ve heard those stupid and hurtful anecdotes. The words seizure and epilepsy, especially when followed by the phrase, “I think I may need help” (the hardest thing for a mom to ask.) Apparently, can even suck the empathy right out of many of their souls.
My daughter’s medical records have neurologist comments saying, “mom asks too many questions,” and “mom Google’s too much.” My daughter’s school records say that my daughter’s seizures were “not real.” That she was “a fake” and that I was “a liar.” That mom was “too overprotective” of her “so called seizing” child. That me, her mom was somehow “harming her” because “others” (teachers, parents and her peers) didn’t like that she was asking for help. These “others” who weren’t doctors and did not live in my house, could miraculously determine that she didn’t need help. Just by looking at her. She looked like nothing was wrong, “normal” they said! “I worry too much.” Their dismissals turned into a belief that I even wielded the power to make doctors lie for me. Just to get their precious IEP.
My own health insurance company was not devoid of the same dismissive attitudes and denial. I was told, I “called and complained too much.” I asked for “too many tests” and “fired too many neurologists.” That I demanded that Ryan’s medication co-pays for the name brand medications that was “medically necessary” to be the same $10-20’s as her generics. (A dance we did every month and every time her medication changed and won.)
My daughter’s pediatrician once told me the Regional Director of my insurance company knew my name. Not because the pediatrician picked up the phone to try to get approvals. It was because I was known as “that mom!” The mom who called the insurance company to make their “preferred provider” simply return a phone call. The mom who fired 4 neurologists. The mom who filed complaints against doctors and the Chief Neurosurgeon who wanted to rush to cut and “fix” my child without doing all the protocol pre surgical testing!
Well “that mom” had all the health insurance denials get overturned by getting an Independent Medical Review with the Healthcare Insurance Commission for the State who regulates the healthcare insurance companies. Only 9 out of 15,000 cases from my insurance company had their appeals for approval and denials overturned. We were one of the 9!!!
“That mom” who dared asked for an IEP, who Google’s too much, pushed against price gouging and overturned insurance denials among many other battles. Also fought for her child in criminal juvenile court against a bully who assaulted her to evoke a seizure. He knocked her unconscious and the judge told my daughter to “grow up!.” I battled through family court when my ex husband’s lawyer told the judge that I was “not being truthful” about my child’s health. He said there was “nothing wrong with the child!” That I “made it all up” to get more $$$’s from the father. It was because I was “lazy” and “did not want to work.”
Yes, I am “that mom” whose child found her voice and felt she needed to be heard by going after the school system for failing to protect her from years of cruel emotional and physically violent bullying and malicious harassment!
Together we fought and won the battle and slated the gargantuan evil!
As you know Allison, it turned out that she didn’t need a right temporal lobectomy. They were wrong! Ryan’s 5th neurologist and 2nd neurosurgeon (our angels) found the real culprit of evil! It was a missed brain tumor tucked between her lobes!
Fighting is not easy. There were times I was so tired, so poor and so beat down, kicked and defeated I wanted to give up. But Ryan never gave up! She knew she deserved to be treated better. She wanted her life back and the future she planned for and deserved! So I couldn’t stop!
In the only IEP meeting Ryan ever attended she got up and walked out. They said it was “impossible” for her to graduate on time. Why did she walk out? She told me “she couldn’t sit with people who didn’t believe in her!” Well she did the “impossible” and not only did she graduate on time but Ryan was the commencement speaker to boot!
Yes, I am “that mom” and “she is that girl” who survived and persevered beyond our expectations. You and Robbie will too!
May love peace and grace be yours throughout this journey. I am always here to help and try to do so every day by helping other parents.
Allison Ray Benavides says
A Roslyn comment! My favorite. This is why we can talk for hours. You have been one of my biggest inspirations and there have been so many times, especially on this horrendous IEP journey, that I have wished I had taken your advice earlier! Thank you for sharing here for others to have access to you and Ryan’s story. LOVE AND MISS YOU!
Veronica Rodriguez says
Thank you for providing the support and stating the facts. As I am reading your story it aligns with mine. Thank for allowing me to feel that I’m not crazy. Fighting for our kids is so hard but I will never stop. Thank u. 👍
Your words are as powerful as your soul. My heart and love goes out to you and your family. So happy to hear that you finally have the help you deserve and need. Hugs.