You are worth the fight. I am sorry life is hard for you. That I have to fight so hard for you. It is not the fight I am sorry for, because I would fight for you everyday of my life willingly and proudly. I am sorry because if I do not fight for you, you would have much less then you have now. If I do not speak up and be your voice, then you would not be heard. If I sit silent you will be forgotten. I am your advocate. I promise to put aside my fears and discomfort and will continue to shout with confidence to all who need to hear. Not because I want to, but because you need me to.
Change does not come when I sit quiet. Change cannot happen without the knowledge and understanding of your rights. Not just your human rights, but your education, medical, clinical, and social rights. I need to know what is equal and fair so I know what to say to ensure equality. My voice will be present when the benefit of me speaking outweighs the risk of me being silent. Change happens because I have the passion and motivation to execute the mission. The mission will always be you. I am your advocate. You are worth my effort and will always be worth the fight. You are worthy, and you deserve self worth.
The world can call me what they want, but I am proud to be “that mom”. To many I may be “here she goes again mom”, but to you I will always just be mom. Your biggest advocate. Your fearless fighter who does fear the fight. I am your voice to ensure you are getting what it is that you need, what is written in policy to protect your rights and not what people provide you to check a legal box. Knowledge is power and advocacy results in powerful change.
As a mother of two boys with autism, a BCBA, new ABA “business” owner, and a special education teacher, I am here to share perspective. To speak the truth about being in a dual role as a parent and BCBA. Having the background knowledge, textbook truths, and proficient skills in implementing the evidence based practices, I will be the first to acknowledge that my kids are undeniably benefiting from my skill set and are inadvertently clients of my own, but here is my truth… someone else needs to do the job because I am unable to apply these behavioral principles to my own child as I could with someone else’s. A behavior analyst is a scientist. They apply behavior analytic principles in a very systematic way in order to increase socially significant behavior. This is everything against my reflexes and evolutionary instincts. I feel there is an insight and truth I can speak of as a parent. My intent is to share ideas and strategies to allow for better collaboration between families, BCBA’s, and service providers. I hope to inspire and to share perspective by sharing my personal stories so professionals can have a better understanding of what this experience is from a parents point of view. I know the ethical code, the challenges, the reality vs. expectation, I am aware of the high percentage of burnout, and I have listened to all of the venting from both sides regarding it all. This is my effort to speak some truth, promote collaboration, and ask for us all to come together to create more compassionate and empathetic services.
My professional experience started years before my children, but my children inspired me to make change. Change happens when you feel as though it can be done better. I wanted different then what was offered to me. I have been lucky to have a handful of effective providers, and unlucky with even more. My boys should have been valued and prioritized, but rather they were part of a business, valued by their private insurance, and viewed as monetary and an insurance collection. My journey is unique, but if unethical business practices happened to me, imagine how many families are taken advantage of. My two boys had their services terminated immediately with no transition due to me opening up a “competing business” and then again after they found out our family did not want services 5 days a week. Parent’s have no choice and due to the significant waitlists, our kids are disposable and quick to terminate if we advocate or disagree.
2. Build the Foundation.
As a teacher, I found my first several weeks with my students was solely with the intentions of building a positive and trusting relationship. As a leader, I am unable to develop trust from anyone without a rapport. It is very hard to be heard before someone is ready to listen. Trust cannot be established without the personable communication and conversations that lead to being able to put a guard down. Proving commitment, listening to concerns, showing emotion, expressing empathy, and being there to listen will result in the finest development of trust. Yes, we as professionals have an ethical code to abide by, but developing an empathic relationship will lead to the most effective outcomes for the client because you will establish parent buy in and support. As a parent, I am trusting someone to spend more time with my child then even I am able to do. I need to trust my team without doubt so I can feel at peace with my kids therapy services.
Providers set insensitive barriers to avoid “dual relationships”, but forget building a relationship is key. Providing ABA services to my child is more than coming into my home and providing a service. It takes trust in order to establish a positive rapport with me. There will be emotional irregularities and moments of grief that will require sensitivity and compassion. It will take hardships and success time and time again before trust is fully established. We as parents have to internally battle what we believe is right, what our intuitions are making us feel is right, and make the decisions to do what is right for our child without really knowing what is right. It’s not that easy. Set boundaries, but rapport is everything.
3. Understanding We Are Only Human.
Before becoming quick to assume us parents are unable to follow through with programs, behavior interventions, and recommendations, think about what it is you are asking us to do. Is it reasonable? What are the expectations? Is it manageable? How punitive is it for the family? Sometimes suggestions are made because as a consultant we know the intervention that can change behavior, but putting high and unrealistic expectations on a parent during their 24/7 parenting job is just setting the parent up for failure. I will never forget when I first started services I had someone ask if we could withhold my son’s Ipad because it held such value as a reinforcer. Yes, I understand the reasoning behind this request and using this reinforcer to create behavior change, but no. I had to explain that the high value of that same Ipad was what I was using in order to get my son to do anything for me. If I wanted my son to eat breakfast, try new foods, complete non-preferred tasks and requests, that Ipad was the only way I was able to reinforce him as a parent to do those things. Create realistic expectations for parents because we have a lot more in our life then the job of a behavior analyst. We wear many hats and hold a lot of barriers preventing us from being successful. This pressure will only create guilt, frustration, and a feeling of failure. We are only human.
When I was younger I had this dream. I had a vision and a plan of exactly what my life was going to look like. I wanted to fall in love, get married, have children, raise my children, have grandchildren, and create a life fulfilled with adventure, travel, and experiences. When a parent is going through the truths behind changing everything they thought their life would be to what the uncertainties of their future life could be is a process. To feel grief and then to feel guilty for grieving, feeling scared, disappointed, devastated, angry… this is grief. Understanding the stages of grief and where you are as a consultant when beginning services in relation to where the parent is in their grieving process is important to understand. We as parents have to go through denial, anger, sadness, understanding, and acceptance in order to fully be able to advocate and give our support to services. This can be a quick process for some and a very long process for others. Next time a parent is struggling with “buy in” and services try to observe where they are in this process. If a parent is still in denial about the severity of their child’s disability, how could they possibly accept some of the programs that are being implemented. If a parent is preventing effective services from occurring, rather than terminating services, maybe try finding a support group for the parent to attend.
5. Preconceived Notions.
When I was 22 years old I was hired as a behavior tech and was introduced to special education, applied behavior analysis (ABA), and a board certified behavior analyst (BCBA). I worked at an incredibly unique school where the special education teachers were also BCBA’s and the student’s in my classroom were diagnosed with severe autism. This picture of autism is something I had never seen. Many of the students engaged in severe self-injurious behaviors, aggressive behaviors, and behaviors that even with the best behavior intervention plans and implementation strategies required creative thinking, stringent and more restricted interventions, and expertise. I remember so many of my students lived in group homes and my initial thoughts were judgements as I could not fathom how a parent could put their child in that setting. On my first day of training I sat there with my eyes wide open as edible food reinforcers were given at a high rate and I could not understand why cookies and candy were used to teach students. I had take-aways from this job and incredible life lessons I now try to disseminate to others as an effort to teach people who have different opinions, judgements, and preconceived notions. Life is not a one size fits all and behaviors need to be viewed within a context and interventions need to be relative to one’s personal experience to increase their quality of life. Those students who lived in group homes were not there because they were not loved or because they were given up on. Many of those parents had to make the most difficult decision of their life in regards to someone they loved more than anyone. These parents had to decide what was safest for their family. Imagine having a child who could unintentionally cause critical harm to a sibling, or at 17 years old engages in self injurious behaviors that without restraint they can cause severe harm to them self and/or others, and that same child is too big to restrain as a single mother. These were involved family members and advocates that were confronted with the most painful decision of their life and that was to prioritize safety over their own personal pain. Additionally, I overtly understood the importance of reinforcement and the wealth behind powerful, creative, and individualized reinforcement that is strong enough to make effective behavior change, reduce unwanted behaviors, and teach socially significant behaviors that create a quality of life for both the child and stakeholders. If your child was engaging in severe self injurious behaviors it is imperative to put preconceived notions and opinions aside and do a risk/benefit assessment. If candy, cookies, or an Ipad is the reinforcer that evokes the desired behavior and decreases eloping into a street, biting skin off of an arm, or even potty training to decrease the scenario of another adult at school changing your child’s diaper, and if the child is capable of learning how to do it themself by pairing desirable behaviors with a reinforcer then that risk/benefit assessment will conclude that the candy or increased time on an Ipad is necessary for that child.
“So what came first, your career or your two boys with autism?” Most assume my kids inspired me to pursue my career in behavior and education when in reality the true irony lies many years before that. It started with my older sister. I grew up as a middle child of three girls, but played the role of the oldest. My older sister has an intellectual disability and a diagnosis of autism. There is something special about being a sibling to someone with special needs. We become inspired. We are conditioned to take on an advocacy role, we become childhood professionals of compassion, sensitivity, and maturity. It’s hard to explain the experience of being a sibling to one who requires more attention and needs, but I can bring comfort to many parents who have fears by speaking my truth. I do not hold resentment. I cannot speak for all, but I personally do not feel anger, resentment, pain, etc. Parents, if you are feeling this way…take a deep breath because your family unit will learn a special skill set that cannot be taught, but only learned through this experience.
For years I struggled with the complexity of the why’s and the “why me’s” and today it is clear to me. I am surrounded with clarity that has changed my perspective on my why. The irony between my past and present just proves to me that maybe some of us are born with different challenges, and these personal challenges become strengths which then create a confidence to give back to others. A confidence to do more and to provide others with personal experience, wisdom, empathy, and knowledge. We can reach goals and bridge gaps just by creating a better understanding.