Bruised and bitten, these autism parents are hidden inside homes equipped with helmets, arm pads, and mats. They are traumatized and need help.
The author and Santiago. Her new group’s focus is to provide parents with validation, healing and engagement, so they feel empowered to keep taking on the daily battles to fight for their children.
By Maria Diaz-Myers
I am the mom of a beautiful 10 year-old boy named Santiago (Santi), who suffers from severe autism and bipolar disorder. Because of his extreme self-injurious behaviors (SIBs) and aggression towards others, Santi has been hospitalized at the Kennedy Krieger Institute (KKI) in Baltimore, Maryland for the last 17 months. Prior to this, he had three psychiatric admissions in Ohio where we live. Thankfully, in September he started electroconvulsive therapy (ECT) at Johns Hopkins and due to his great response, he is expected to come home on January 3, 2020.
As with many of the kids at the very end of the autism spectrum, Santiago is a non-responder /poor responder to most psychiatric medications and he is also labeled behavioral intervention resistant. Before ECT, Santi would hit his forehead against hard surfaces (e.g., floor, kitchen counter, bathtubs, sidewalks, and especially his knee) many times per hour. He had two permanent big calluses on the top of his head that would open, bleed and close just to be re-opened again in a matter of hours, or days if we were lucky.
Santi also would become extremely aggressive towards anyone who tried to block his SIBs, and sadly, a few times, he did attack his little sister pulling chunks of hair and biting her face. Property destruction and elopement were constant themes in our lives.
The author’s son in a padded therapy room at an Ohio psychiatric unit, and on Halloween with an aide wearing pads to protect from his bites.
Despite having received early intervention therapies at school and at home since the age of two and working with one of the best psychiatric and behavioral teams in Ohio, such was the terrible state of our lives when Santi was admitted to KKI. It took almost a whole year of relentless work by some of the most brilliant minds in child psychiatry and pediatric psychology in the country to figure out that Santiago had a severe underlying mood disorder.
Last July, the Psychiatry Team told us about ECT noting that it was the last option they had to help our son. After many battles due to his young age (he was 9 at the time), the treatment was approved. Today, after 4 months of ECT and intense behavioral work, we now have our sweet boy back, but don’t get me wrong, Santiago is still a severely autistic, non-verbal child who requires constant one-on-one supervision.
Though it might appear differently, the main reason for this post is not to tell you about our son’s journey, KKI or ECT. My fundamental need for writing this article is to talk about US: the exhausted, loving parents of that small 7% percentage of kids in the spectrum, whose aggression is so severe that we have gone through multiple inpatient hospitalizations around the country and remain in crisis.
During all the months that I have spent in Baltimore, I have seen many families come and go, and I can tell you with 100% certainty that absolutely all of them have endured many years of chaos and trauma; they have navigated many health, special education, and Developmental Disability systems before reaching KKI’s doors. Yet, most of the organizations that help our children have provided US with little to no emotional support all these years.
While I have heard repeatedly that the focus of these institutions is to help our children and not the parents, I can’t help but wonder: if the parents are in so much distress and exhaustion that they can barely eat, sleep or function who will then take care of the kids? Worse, how can they make effective decisions for their child(ren) after years of living in constant turmoil? And how can they be expected to meet their child’s extreme needs while keeping their careers and working at their jobs efficiently?
I mean, how is it possible that most children’s hospitals provide support groups for parents of kids with cancer, NICU babies, or children on transplant lists, but not to US? Is the pain of the parents of the most severely autistic invisible?
It is true, as some have pointed out to me, that there are multiple autism parent support groups that I could join. However, I found myself unable to relate to the autism parents whose kids, despite having hard setbacks and challenging meltdowns, would eventually make progress thanks to behavioral therapies and/or psychiatric medicine, while my child would always regress. It was heart-breaking to see their concern, and at times, scared faces after hearing about one of the many violent outbursts that we have endured with Santi.
Logo of the author’s new support network.
Autism as portrayed on TV is nothing but a fairytale to US. The parents I belong to are hidden behind hospital walls, or inside homes equipped with helmets, arm pads, mats, and 1-to-1 or even 2-to-1 behavioral support (if they are lucky to find it). We are always in a hyper-vigilant state of fear. We fear our child or somebody near him could get badly hurt if he’s is triggered by something we did not see coming. We are truly isolated. It is not that we voluntary opt out of participating in all the wonderful autism events held by so many great autism organizations; we just cannot afford the risk of destabilization and injuries.
For the first time in six years since Santiago’s SIBs became extreme, I met mothers and families just like ours, who understand exactly what living life with this level of autism is, and their friendship is a true blessing for my heart, my soul and my mind. It is a direct result of the strength I found with them that two months ago, and knowing that Santi’s discharge was approaching, a small group of KKI moms and I decided to create “Solidarity” (https://www.solidarityp2p.org), a parent-to-parent support group that transcends the walls of KKI and reaches out to any parent/ caregiver whose child has gone through hospitalization due to severe aggression.
Our goal is to end the isolation caused by severe autism by personally connecting parents who are experiencing the same type of challenges or who are interested in the same topics. We do this by keeping a database of each member with their location and any other information that they are willing to share. We provide support for each other, and we transfer the knowledge we accumulated in our journeys. We promote individual and tangible relationships in-person, whenever possible, or via phone, text or email (whatever the families prefer).
Although we have a community Facebook page, it is mainly to inform news of the group and/or sharing interesting articles about the severe autism world. We purposely refrain from social media support for two reasons: 1) to ensure that the parents that we connect are not both in crisis, and 2) to complement and not overlap with the wonderful work that Facebook groups such as: A Voice for Joshua, Support Group for Parents of Severely Autistic with LD, and KKI NBU Impatient Families already do.
In other words, we have a proactive and personal approach to support. We are the group that when you are too tired/sad or depressed to open your Facebook, we’ll reach out to you just to say hi and see how you are doing. We are the group that when you need to lay down because your autism crisis has left you paralyzed, (and only with your permission) will keep knocking on doors, gathering resources and brainstorming until you are ready to fight again.
Finally, we are not an advocacy or autism grassroots group per se. Our focus is to provide parents with a real place to find validation, healing and engagement, so they feel empowered to keep taking on the daily battles to fight for their children’s rights, including advocacy efforts.
Part of our vision statement reads: “This is your safe place, nothing that you say will make us think that you failed as a parent or that your situation is too crazy, sad, dangerous or impossible to be real. There are no judgements…. Here you can truly say how you are feeling or what you are thinking. No need to hold it together so people (even -or especially- loved ones) don’t get upset, scared, down or desperate. This is a space we created only for YOU, for US. You finally found your tribe!”
Would you do us the honor of joining us?
Contact:
Email: solidarityp2p@gmail.com
Phone: (614) 547-3480
Facebook: here
Maria Myers is the mother of a boy with severe autism. She lives in Columbus, Ohio.