In this episode we speak to Paula, the adoptive mother of two boys from foster care. One son has PTSD, Trauma, and Autism. The other son has ADHD, Tourette Syndrome, and Anxiety. Paula talks about the importance of not taking your child’s behavior personally, the gift of adoption, and the importance of laughter.
For a transcript of the podcast, go to https://mothersonthefrontline.com/podcast-transcripts/
Years before getting my Ph.D. I worked as an academic counselor in Student Affairs. It was there that I learned to do what I called a “temperature check” with my students, I would ask every student during their weekly visit whether they were swimming, treading, or barely able to keep their head above water. It was a good way to assess whether they needed my intervention and if so, what kind of service they needed. Years later I have found that this is a good way for me to stop and assess my stress levels, check my son’s condition, and the gauge the condition of my family in general. Well, if asked the question today, I would have to say that I am treading water and barely able to keep my head level. I am tired and my family (particularly my son) has just come through one of many crises. We are now trying to clean up/rebuild and recover, which means that my condition, can best be described as precarious.
My son has autism and a mood disorder, and if this weren’t enough – he is sixteen years old. If you are or have ever parented a teen, then you already know that a sixteen-year-old is a frothy mix of toddler, child and adult. He is brilliant and remarkably social for a kid with Autism. He has friends, is maintaining a 3.5 in school, and is independent enough to take public transportation to and from home. But he only has two gears, and when not on meds his days are spent moving between ecstasy and despair until finally his entire system crashes and he falls into a deep coma-like sleep. His medication, when he takes it, keeps his moods regulated, and then he only has the sensory, balance, and social effects of his Autism to manage. But he is sixteen, willful, and craving independence. Right now, the area where he asserting control is his medication. Which is perfectly normal and understandable, who doesn’t want to control what goes in and out of their bodies, right? So, we are trying to ride this wave which places us (me, him and his dad) in this painful push and pull where we constantly struggle between his real desire for independence and his equally real need of our guidance.
At this moment, however, I feel like a fraud. Who am I to write in the position of advocate when I can’t even convince my own son of to take his meds, and if not his meds then at least eat something decent. Why would anybody want to hear my story? After all, I have no happy ending tied up in a neat bow. We are in the middle of a life long journey and I have no conclusions, only process. As a mom, I spend most of my time coordinating appointments, negotiating with insurance companies, and conferencing with doctors, therapists, and teachers. It is hard to think of my mom work as advocacy. In fact, most of my knowledge of advocacy comes from studying public policy where advocates are described as activist or professionals who work (publicly) on behalf of a cause or group to affect political change. Merriam Webster defines advocate as “a person who publicly supports or recommends a particular cause or policy.” Some synonyms for advocate are “champion, supporter, backer, proponent, fighter, and crusader.” Incidentally, Webster’s definition of mother is “a woman in relation to her child/children,” and mothering is “bringing up a child with care and affection.” Nowhere in these vague definitions of mother/mothering are the words championing, supporting, or crusading, but this is nevertheless what we do. If you have a child with a mental illness or disability caring, nurturing, championing, supporting and crusading is what you are almost always doing. If you ask my son, I am his biggest supporter and worst enemy. I did mention he is sixteen, right?
At Mother’s on The Frontline we want to enhance the notion of what it means to be an advocate. If you are a mom and you are negotiating your child’s 504/IEP, then you are an advocate. If you are sharing your story with and supporting other mothers of children with mental illness and disabilities, you are an advocate. When you coordinate a plan between the psychiatrist, counselor, and coach so that your child can participate in a sport (or activity), you are an advocate. We want to know about your process, how you survive, thrive, how you fall and get up. Personally, I have learned as much if not more from the moms who talk candidly about their experiences raising a child with mental illness than I have from pediatric sites, cookbooks on diet/nutrition, and the pamphlets that litter doctor’s offices. It is our goal that this site be both resource and refuge. A place where you come to share as well as learn. Here at Mothers on the Frontline, we recognize your mothering as advocacy and your story as valuable. We want to hear from you. Whether you are swimming along, treading in place, or barely able to keep your head above water, we believe your voice and your experience matters.
Sometimes it’s hard to know where to begin. Mothering a child with special needs is overwhelming, all the more so the systemic problems preventing kids from getting needed services.
Mothers on the Frontline started with one simple idea:
Mothers have unique insights into the needs of their children.
Not an earth-shattering idea, is it?…
Or maybe it is a game-changer!
What if we created a website that would allow mothers to share their stories, their wisdom, their experiences, in such a way that they would:
- Be empowered to most effectively help their children
- Reduce the stigmas surrounding children’s mental health
- Give decision-makers key insights to help them better help our children
That would be game changing.
My perspective as a mother has often been downplayed or dismissed by professionals, whether they be doctors, educators, or the many therapists who have come in and out of our lives. It is not that these individuals are anything less than caring people who have dedicated their lives to helping children – it is that they have been taught to think of themselves as “experts” on whatever is ailing my child, though they have known him for less than five minutes and only see him through their narrow professional lens.
Here is where the conundrum lies: all of them have valuable knowledge and experience to potentially help my son, but taken together, the result is most often contradictory advice, services in silos, failure to address the whole child, and unnecessary trauma for both my son and family.
I wish my experience were unique. It is not.
A few years ago, I was desperate. I was unable to get the school district to set up and consistently follow an Individual Educational Plan that was appropriate to my son’s medical diagnoses and unable to access medical services he desperately needed because of a three-year waiting list for Iowa’s Children’s Mental Health Medicaid Waiver.
After trying everything, I called my state senator. He generously met me for coffee. That meeting changed my life in two ways:
- He helped me understand how to navigate a broken system. (For example, when the director of special education did not return my phone calls or e-mails for months at a time, he recommended that cc my next email to the board of education. I did and got a reply within a half hour.)
- He helped me understand that elected officials want to hear from mothers. Politicians are aware that professional associations and their lobbyists have ulterior motives; but they know mothers are focused on the wellbeing of their children.
Wow! Let’s take that in… not only do elected officials want to hear from mothers, but our voice is critical to effecting change.
My first thought was “mothers of special needs children are doing everything they can to survive the day – we are not in a position to be politically active.” (At the time I was bringing my son to five different therapy appointments a week and working full time -absolutely necessary given the out-of-pocket expenses not covered by insurance. Not to mention my son’s condition prevented more than two hours of sleep at a time – for either of us.)
Circumstances changed that year – my son’s symptoms became much worse and we were no longer confident that he was safe to himself, and possibly to others. After his first mental health hospitalization we made the heartbreaking decision for him to live in a PMIC (Psychiatric Medical Institution for Children), where he lived for nine months.
These months were a time of healing and recovery: for a period of time I knew my son was safe and saw him flourish academically in an educational environment that met his emotional and developmental needs.
As for me, the reduced stress, regular sleep and less complicated schedule of those nine months gave me the ability to look beyond daily survival for more sustainable and systematic solutions. I became a children’s mental health advocate.
Since then my son has finally received the Children’s Mental Health Waiver. Its services have been key to his success living in the community. Our struggles are not over, but each year he becomes better at articulating his feelings and asking for help before he escalates or considers hurting himself.
Advocacy has become a regular part of both of our lives. He has become a Tourette Syndrome Ambassador and works to help others better understand the condition. This work has blended nicely with his passion for politics and he has enjoyed opportunities to talk to legislators at the state and federal level.
As for me, I have spent the last few years contributing a mother’s point of view to state-level discussions on children mental health health policy. This work motivates me to find ways to help other parents share their stories, their wisdom.
Which brings us back to idea behind this website:
Mothers have unique insights into the needs of their children.
The goal of Mothers on the Frontline is to empower mothers to share their wisdom and a platform to do it.
In doing so it can also give decision makers a deeper understanding of how children’s mental health issues intersect with family systems, educational systems, juvenile justice systems, health care systems, communities, etc. In other words, its helps professionals and elected officials have a better view of the needs of the whole child.