Author: Nicole Branson

As a parent struggling to raise children with neurobehavioral conditions, or brain differences as we say at home, daily life is often fraught with challenges. Parents of neurotypical children can rarely relate to our struggles or the unconventional way we now parent our children. The standard parenting trope seems to rely heavily on shaming, blaming and judging parents and children who deviate from whatever the current “good parents/good kids” looks like. Good parents don’t let their kids do___ . Good parenting looks like ___. You can fill in the blanks.

When you’re caught in a riptide your normal instinct to swim straight back to shore is the very thing that will take you further out to sea and possible death. Until you stop fighting, change course and swim parallel to the shore you’re in a no-win situation. People standing on the shore unaware of your circumstances may wonder why you’re not swimming correctly. “He’s not a very good swimmer. Why doesn’t he just do it the right way?” they may think.

Parenting children with neurobehavioral conditions can feel like this. As with getting caught in a riptide, you can keep doing the things that take you further out to sea, further away from your goal of connection, love and a healthy child, or you can try something different, even if it’s against what you’ve always known to be right and what other people believe is right.

What if the standard parenting requirements you must meet to be a “good” parent don’t work for your neurodiverse child? What if those very requirements are harmful to your child? What if school, playdates, chores, punishments, and rewards escalate the worst behaviors in your child because of their brain differences?

So here we are trying differently, all of the time. The things we do and don’t do with our children leaves us open and vulnerable to a sea of judgment from the outside world. In the past, it has made me weary and fearful so I stayed small and quiet. I have isolated myself as much as possible to avoid the pointed remarks and judgment that seem to be inevitable when you parent unconventionally. But like a lobster, I have outgrown that shell. It hurts too much to stay that small anymore.

Recently the “violent video games are bad and cause damage” argument has resurfaced in a big way. A friend posted something a few months ago that struck me right in the gut. In her mind, it is so clear that video games with any shooting at all are harmful. She just cannot understand how parents could allow such a harmful activity to continue. For our children, some of these very games have been the catalyst to their growth and a tool to help them navigate the world.

My boys have many, many challenges and struggle with most typical things you and I don’t even think twice about, but video games…they are good at those. While playing Fortnite they are making connections with other children. They have friends and feel valued. My boys brains process dopamine much more rapidly than typical brains. To get that dopamine hit their brains crave they have often sought it out through negative behaviors like fighting…now they turn to the pleasure-inducing game they love. I much prefer the video gameplay. My husband often plays with them and they love that time together. This is a world they understand and can navigate well. In their games, they can do things that aren’t always possible for them in the outside world. In the games, they can multitask, strategize and work as a team. They have learned to try again even when it’s hard. They feel confident in their abilities and know they bring value to any team they play with.

There are many other instances like this for us. The outside world and its expectations are not an appropriate fit for my children. So here we are trying to stay afloat and minimize damage until we can get back to shore. We do things radically differently for our children and we will continue on this path to meet their needs to the best of our abilities. We will have failures and successes, at times we may get pulled further out to sea than we had planned. We will change course over and over again, I suspect. We will be met with judgment and shame but I’m hopeful more people on the shore will see us and recognize our struggle and cheer us on until we can reach safety again.

The Oxford definition of paradigm shift is a fundamental change in approach or underlying assumptions. In my parenting journey, I’ve had to make a fundamental paradigm shift in how I see all people. Since discovering that my children have an invisible, physical, brain-based disability called FASD and that it affects 1 in 20 individuals, I’ve had to make many adjustments. The most significant was making the leap from “won’t to can’t.”

When we added to our family through fostering and then adopting I was forced to change how I viewed behavior. Previously behavior had meant something a person does consciously or willfully. It was a reflection of who that person really was. Negative and bad behavior like rudeness, name-calling, screaming, and aggression clearly left me with the impression of “that’s a bad person.” If someone in the world yelled at me or called me names, or destroyed my property I would not stay in a relationship with them. I have very clear boundaries around what is unacceptable behavior towards me.

And yet, I found myself in a very complicated relationship with a child. My child. A child I loved deep into my cells. I love this child with all of my being. And…my child’s behavior towards me felt abusive, clearly and simply. This was not a relationship I would or could leave. This is forever.

But I needed things to change, so I wanted him to change. I wanted to fix him and his behaviors. It felt like he was doing this TO ME, at me, and it was often a struggle just to like him. This was very unlikeable behavior after all.

When I finally came to realize his behaviors were actually a symptom of his brain-based disability and not at all a reflection of who he was or meant to be, I could see him with such compassion. When your brain has a hard time processing information quickly and the world you live in doesn’t understand that everything is harder and fraught with unexpected consequences. Throw in the inability to think abstractly and concepts such as time, money, or cause and effect can be nearly impossible to understand. Literal thinking is very limiting, especially in social interactions. Sarcasm and subtle social cues are extremely abstract concepts. Add to that sensory processing difficulty, memory impairment, and the inability to regulate emotions, life is really hard. When from the outside you look “normal”, people’s expectations often do not match your abilities.  You can imagine how all of these challenges would lead to a build-up of anxiety, frustration and anger.

And there is the paradigm shift. When I was able to recognize brain = behaviors I could actually start supporting my child in a way that helped rather than hurt. I just had to change my approach and assumptions. Now when his symptoms flare up I’ve learned to look for the underlying cause, to not take it personally and to STOP FIGHTING. I’ve also learned to go slower, and lower my expectations while focusing on his strengths. I have shifted from thinking “he won’t do something” to understanding he “can’t do something” right now. His brain is often unable to be flexible, but mine is, for the most part. It’s not always easy and it’s made us pretty unconventional parents but his symptoms are greatly reduced.

And this has me thinking about how much bigger this problem really is…Imagine a whole childhood, adolescence, and adulthood believing that you are the problem, rather than you have a problem. How many children and adults with an invisible, physical, brain-based disability have not been identified and provided with supports?

Because of the lack of identification and proper support our correctional and criminal justice system, homeless population, and streets are full of individuals with brains impacted by drugs, alcohol, and trauma. It is estimated that 60% of people with FASD have some involvement with law enforcement in their lifetime. This is not because they are “bad people” and this is what they deserve. They are just living in a world that doesn’t see or understand them.

People with neurobehavioral conditions can and do lead successful and fulfilling lives. When we focus on their strengths and offer accommodations for their disability, just as we would for a physical disability, they can and do, grow into contributing members of society with many gifts and talents to share. There are so many success stories out there. When given the chance people with FASD and other neurobehavioral conditions can meet and even exceed their full potential but it requires an understanding family, school, or community willing to see them and their behaviors differently. When we meet them with compassion and a willingness to accommodate their needs we set them up to succeed rather than fail. And I’ve come to realize when we meet the needs of our most vulnerable populations we all benefit. All it takes is a paradigm shift.

 

My first born was conceived with zero forethought. At 23, I was not planning on becoming a mother. I wasn’t really planning anything, just living my life. I was working as a nanny and waitress and I spent my evenings going to watch bands play with my boyfriend (now my husband) and drink. Although I do not have a drinking problem we went out at least 3 nights a week and were in line with the rest of our friends.

When we discovered I was pregnant, the shock was an understatement. As we processed this new information we formed a plan to have our baby. I stopped all smoking and drinking and started taking vitamins. I ate as healthy as I could afford to and spent the rest of my pregnancy falling in love with my baby. I was so excited to meet her. Feeling my crunchy hippy roots I wanted as natural of a birth as I could have. I found a natural birth center and met my midwives.

At our first visit, I was asked about smoking and drinking. I laid it all out for the midwife and she told me none of that mattered. “Whatever you do in that first trimester has no effect on the baby,” she said. And I believed her.

So when my daughter was slow to crawl, walk and talk we called her a late bloomer. When the speech therapist said, “She seems a bit off. Does she fall down a lot?” I felt furious. I experienced her as a perfect, gorgeous child. She didn’t fall down often and she wasn’t “off”. I thought she just needed speech therapy.

As my darling girl grew the “late bloomer” label always fit. She did well enough in school but struggled with anxiety and fitting in socially. We made many adjustments for her and all of our children through the years. We dabbled in homeschooling, held her back a year in middle school and sent her to an alternative high school with smaller class sizes and flexible teachers. It worked, she made it through school and graduated, but her self-esteem suffered greatly. As her peers were driving, heading off to college, living on their own or just working, my daughter felt the weight of not measuring up. She was nowhere near ready for such big life changes and she felt bad about it.

I am a big believer in following your children’s lead so, we talked about it being fine that she is developing at her own pace on her own timeline. We just had no idea why she was developing late in comparison to her peers.

When we finally figured out that she has FASD we were stunned, but grateful for an answer. I wish many things had been different in her life. I wish we had known about FASD before she was born. I wish she had been diagnosed early. I wish we had implemented the neurobehavioral model when she was young. I wish she had been given all the support she needed. I wish life was easier for her brain. I do not, however, wish her to be any different than she is.

In spite of the challenges her brain has, my daughter is incredibly kind, compassionate, empathetic, loving, and nurturing. She loves children, especially those who require more understanding and help. She has a job she loves, working with children with autism, and has plans to do something in the medical field. She is in a strong and healthy relationship with a boy who loves and understands her and intends to move in with him next year.

My daughter is a gift to this world and everyone who comes in contact with her. It’s my fault her brain has extra challenges because of my drinking, but I can’t live a full life filled with regret and guilt. I didn’t know what I didn’t know and in spite of my ignorance and lack of planning a beautiful being was created. She gave me the gift of motherhood and the gift of mothering her! I am grateful for this life with her. I am grateful for her, every day.

We had been on a very long and frustrating journey with my son to get him, and us, help. Our fun, funny, athletic, energetic, adorable, and charming son would often tantrum and rage in a way not typical of anything I had seen before. These 40+ minute tantrums were unpredictable and exhausting and seemingly unstoppable. No parenting or discipline technique did anything but escalate him.

As puberty set in, it was getting even harder to manage or predict the meltdowns. We had already been through years of therapy for him, starting at age 4, and we’d begun medication when he was ten, which helped some. We had been through a handful of therapists at this point which resulted in our feeling misunderstood/judged and his gathering multiple diagnoses.

By the time he was thirteen, we had such a combative relationship that I was having a really hard time just *liking* him. He had become mean and critical and was generally unpleasant to be around. We were battling over everything and I was really burnt out. I had no idea how we were going to survive the rest of his adolescence.

Through a series of seemingly small events, and a very dark/scary episode, we were finally sent on the right path. Through our mental health clinic, we got a therapist who said, “it sounds like he has fetal alcohol exposure.” On our first meeting he handed me a stack of information on FASD, and on those pages I saw my son. Finally, I had an answer, but it was not the one I wanted. I was grief-stricken at the realization of what this meant for him and for our lives as a family. I was full of questions, sadness, fear, and grief.

One month later we were in a lovely room in the basement of an old hotel in downtown Portland, where Diane Malbin began her FASCETS training. She poured everything I didn’t know I needed, right into my being. In that room, I grieved and cried as the connections were made. I could now see that two of my other children also had FA/NB as well.

As we moved through the training, the fear and sadness gave way to hope as I could finally see a way to help my son. The NB model made sense to every part of me. I could instantly see the potential in this new way of looking at my child and all people.

We went home and started making changes instantly. At first, we made just small changes but it became easier and easier to think bigger with less fear.

We had already identified the public school as a poor fit, but even the small private school was unwilling to make accommodations for him, so we decided to homeschool. It was not going well, so we stopped…everything. We let him have a computer in his room (with parental controls), let him wake and sleep as he wanted, and just generally left him alone. He went to therapy and his meds appointments but that was pretty much it. He ate in his room and spent all day playing Minecraft and watching videos.

We were doing the exact opposite of everything we were ever taught about good parenting, but I still felt like we were doing the right thing. Over the course of many months, he started to change and soften. His stress levels lowered and he started coming out more. Now we are two years in. He’s still at home, he’s still playing Minecraft and watching videos most of the day, he’s still not really doing school. But here’s what he is doing…he comes to us, just to talk. He engages with his siblings without animosity or annoyance. He helps out around the house when I ask him to, most of the time. He has friends he plays online games with and one real friend from elementary schools that still comes around. He feels like he’s popular. He goes to the gym and works out. He runs errands with me and helps cook occasionally. He goes out into the community with his friend, usually just to walk to the grocery store for donuts. Just the other day he even went to the mall with his friend to buy his dad a birthday gift and also rode the bus! Now when I walk into his room and ask him to bring down his dishes he does it, without fear that I will make a snarky comment about the state of his room.

Since we implemented the NB model in our family he has been crisis-free, with zero major meltdowns. The NB model gave me many things but mostly it gave me the tools, and the opportunity to see my son differently and connect with him. We now have a relationship built on mutual love and a deeper sense of trust. He now trusts me to take the time to understand him. He trusts that I see him and that he matters.

He’s fifteen now, and I have no idea what the future holds for him or for any of us. What I do know is that parenting in this heart/brain-centered way gave me back my son, and that is the most valuable gift I have ever received.

As I sit here and digest the details of the latest school shooting I am struck with a question. Is this the work of a brain damaged by alcohol? Is this boy a psychopath or another victim of poor diagnosis and lack of education and awareness around FASD? Is this the result of a lifetime of good strategies and good intentions that were ultimately a poor fit because of undiagnosed brain damage? My heart says yes, so I’ve been aching with the possibility. We know the signs…academic challenges/learning disabilities, trouble at school, trouble making friends and connecting with others, perseverations…multiple diagnoses including mental health…

I read Mom tried many different schools, purported to be very involved and as being “probably too good to him” who went “over and above” for him. Good strategies->poor fit

Without his external brain there for him and all of the comforts he had used up to that point to help him manage…the perseveration couldn’t be stopped…? An extreme case to be sure. I don’t know. This is just where my brain goes.

I know more will come out and ultimately we may never know what led to this terrible massacre and…my feelings are about so much more than this one preventable tragedy. My feelings are about all of the preventable tragedies that often end up being the lives of people with FASD. A lifetime of being misunderstood, not “fitting”, and not getting the appropriate supports needed to live a functional and healthy life…leads to tragedy. Homelessness, drug and alcohol abuse, sex abuse, anxiety and depression, suicide, mental health issues, violence, financial insecurity, incarceration…a tragic list to be sure.

FASD affects us all. It’s not a woman’s issue or just a birth mothers cross to bear…this is on all of us. It affects all of our society. And until more people start talking about it, start yelling about it…we won’t get want they, and we as caregivers need…proper diagnosis and supports.

Without proper diagnosis and supports, what chance does this enormous segment of our population have to live healthy and functional lives? Our prison systems and homeless shelters are filled with the answer. Not much.

I’m ready for a different outcome for my children and for all of our children. I believe the neurobehavioral model is the key to a better future. I want so desperately for this to be mainstream information. I want a better future.