Brain Health
In most circumstances we have been blessed as species with almost two of every body part; and further lucky that in most cases, we can adjust to only one (on eye, one leg, and/or one kidney). However, we are only born with one brain; sure, it has two hemispheres, and numerous lobes, but it does not lend well to injury. In certain cases the brain can be mildly damaged, or function with parts missing/destroyed, and the patient can survive.
My family has had their fair share of brain health challenges. Most of my family has at least one psychiatric diagnosis, and at least one physiological diagnosis that impacts the brain. Unfortunately, my brother has seemed to inherit the worst of both categories. His experiences have changed the way my family handles our brain health in a positive manner. This is part of his story:
My brother Dennis has the formal diagnosis of a Neurexin 3 Deficiency due to a Chromosome 14 Microdeletion. His symptoms present as clinically diagnosed Autism, OCD, PTSD, Hypermobile Ehlers Danlos Syndrome, Gastroparesis, immune deficiency, vascular migraines, brain deformity, Trichotillomania, and Dysphagia.
From the ages of 8-12 my brother suffered horrific abuse at the hands of staff and teachers at the Variety School in Las Vegas, NV (reference: CCSD 1 and CCSD 2). He came home with bruises, brands, burns, and cuts that at the time of injury should have required emergency attention (IE 7 inch laceration to the face, a partially amputated finger). One day, he came home with a 2cm laceration to the back of his head. The bruising and swelling that appeared the next day caused my mom to fear the worst. Dennis was brought to the emergency room where doctors discovered Dennis had a severe traumatic brain injury to his occipital lobes.
This was a clinically devastating diagnosis to receive as my brother is missing parts of his frontal lobes, and has defects in the corpus callosum. The doctors warned us that with this injury we could expect to see at least a year of personality changes, aggression, night terrors, seizures, and visual disturbances. When asked how the injury occurred we told them, “He came home from school like this.”, and we began to watch him closely. We upped his medications and care requirements but still faced 18 months of aggressive personality changes that would require medical intervention to stop. At the time, Las Vegas only had one mobile developmental care crisis unit and many times my mom and I would have to wait for hours trying to keep my brother safe from himself before help could arrive. No one ever trained us on proper restraint techniques, and the brain injury caused us to begin to research the safest methods we could use and became masterful in the techniques. The safe and comfortable safety holds have saved my brother's life numerous times; from trying to jump off a freeway overpass out of a moving car, to sitting on a 4 hour plane ride with the help of an air marshall, we’ve done it all.
Due to my parents divorce, and documented corruption of our family court judge, Dennis was under a court order to attend the Variety School. Even as the abuse continued, we could only keep him out due to “illness” for as much as the laws allowed. We faced truancy and sanctions from family court if he was continually absent. Our attorney and pediatrician worked diligently with us to reverse the order however there was a court backlog at the time, and the expected wait time was 12 to 16 months before a resolution could even be proposed to a new judge.
We had been told at the time my brother likely had the mental capacity of a 3 year old or less. We have operated in this gray zone of his capacity as the available tests are not designed to assess capacity in nonverbal patients. So the day my brother came home to me and I saw his finger was partially amputated I panicked. After reassuring him, and giving him appropriate first aid and pain relief, I sat him down very calmly and I asked him, “Dennis what happened to your finger? Can you show me because I know you didn’t do this to yourself.” He took me by the hand into our kitchen and signed for me to unlock the silverware drawer. I obliged and he pulled out a kitchen knife and held it up to his finger. He chose a knife with very distinct serrated edges, and carefully held it there, “Okay Dennis I understand, we need to call for help from a grown up. I will take care of this with mommy right now. Can you please put the knife back?”, he followed my instructions and then asked for time on YouTube. I got him settled on the couch and called for help. I called the Clark County School police to report the injury. An officer was dispatched to our home, and our sitter called my mom to come home. She was appalled, and we filed a criminal assault complaint. The officer took photos and asked my brother what happened, to which he did the same thing with the officer as he did with me. The officer looked at us in horror. This kid wasn’t a vegetable and was credible by his consistency of his complaint. When caregivers would come and see the injury but hadn’t been present at the time of its discovery, Dennis repeated the story to them by taking them to the kitchen drawers. Many tears were shed that week by all.
Two weeks later, we called the police again. Dennis had come home with numerous large burns on his arms, shoulders, and back. They had discernible lettering in some places, we reported these injuries for what they were, branding marks.
Now approximately three weeks from the first injury, Dennis came home with a 7 inch long, 1 to 2 millimeter wise laceration to the face that extended from his right eyebrow, over his nose, into the tear duct area of his left eye, down the left cheek, and stopped at his lower jawline. Again the injury wasn’t reported or mentioned in his communication logs. We called the school for an explanation as this injury should have resulted in emergency medical attention. They claimed it was because Dennis had tried to eat glue and the bottle slipped and cut his face when they tried to take it from him. I don’t know about you but I have definitely opened a glue bottle with my teeth before (to remove the plastic packaging), and I have never cut my face on a glue bottle. A glue bottle is inherently child safe with supervision, and a near zero risk to injury. We didn’t buy it, it obviously was an injury made by another cutting implement with an extremely sharp blade, like an art class x-acto knife.
My mother began to drop him off everyday instead of him taking the bus. She began to walk into the classroom with my brother, claim to have him need the bathroom and offer to take him for the teachers. The classroom had an attached closet Andrew bathroom. The time my mother spent in the classroom proved very educational. She was able to see they were using one toothbrush for all 7 to 10 kids to use to learn to brush their teeth with. In addition, the brush was dirty, moldy, and frayed. She also discovered that the light switches were on the outside of the closet and bathroom. The closet door was also almost always ajar, despite the potentially hazardous materials stored out of reach. There should have been zero reason for it to be open. Slowly, my mom's fear and anxiety exponentially grew with each visit.
Somehow, throughout my brother's educational career I have been involved. My father would often befriend his teachers and convince them that I could be helpful and have me join in his classes when a babysitter wouldn’t show up for work. When I had attended classes with him at his other schools prior to V4tariety, his teachers and paraprofessional supports worked diligently to involve him with other children and have meaningful learning experiences. When I attended one day at Variety I was pretty appalled. The entire student body was composed of children with disabilities; about 90% were severely mentally disabled, about 5% were likely deemed “difficult” due to racial tensions, and the other 5% were both severely mentally and physically disabled. The Variety School had been built as the only refuge for these children, who often were wards of the state, but was horribly maintained. Federal standards and protocols were obviously being disregarded. Their school “security” consisted of maybe one, two if they were lucky, security guards off duty from the strip clubs 15 minutes down the street. They were responsible for maintaining the property’s safety, and attended to any student in crisis that needed a restraint. My time there felt like I was “undercover”, I wasn’t even in high school yet at the time, and even I could tell that Variety was one step from a catastrophic event.
Then the very scary things started happening, the phone calls from the Clark County Police began for my mom. At least once a week the school would go on lockdown due to it sharing a parking lot with a high risk homeless shelter when someone would bring a gun or threaten the property with a bomb. Often, the police would direct traffic lines of parents to pick up their kids to “evacuate” the area, even while the threat would still be actively occurring.
“My residency in Harlem was easier to deal with because at least it was me getting shot at or threatened, not my child.”, my mom would say.
Then one day, the police called saying, “Dennis went missing from school. He ran out the front door and we couldn't find him. He was so fast that we couldn’t stop him. We locked down the neighborhood around campus and are conducting a search. We think he is hiding and won’t come out for unfamiliar voices. Could you come help us?”
My mom found him next door hiding in the adjacent homeless shelter. He was visibly distressed and upset, but immediately calmed when my mom found him.
My mom credits her ability to remain calm in these crises from her medical training. Prior to being an OBGYN she was interested in vascular and cardiac surgery, so she had her fair share of trauma room experience. Her residency was in New York City and Harlem during the 1980s. She saw race riots, active shooters, and practiced through the AIDS crisis. She’d often tell me that she’d rather go through her residency again, than have my brother spend one more minute in that school. Often, she’d claim, “I’d walk naked down the strip and lay in traffic if it meant that your brother would be safe.”, as a family we were being pushed to unimaginable limits.
We’d been put through the wringer at this point, and began to both drop him off and pick him up at school to reduce his stress surrounding the two highest stimulation transitions in his day. This family time (45 minute drive each way) was incredibly therapeutic for all. It also afforded us a certain amount of legal protection; if we reduced his outside contacts, we would be effectively reducing the options of who could be abusing him. By eliminating the bus driver and bus staff supports, it only left the school staff as possible assailants. We hoped and prayed this wasn’t the case, we did our best to assure his safety by reducing his time on campus, offering to pay for private 1 on 1 staffing support for Dennis and the classroom, and even offered to implement a home education plan due to his injury and illnesses. Every possible option we offered and tried, which only bought us time. We needed the court order lifted.
The last major injury came soon after, and Dennis came home inconsolable. His ear was bloodied, red, swollen and hot. No stranger to ear infections, our nanny grabbed the otoscope from the first aid kit. We didn’t expect to find a 1.5 cm section of ear DETACHED. It should have had stitches and received emergency medical attention. The ER said they couldn’t apply stitches, the injury wasn’t fresh enough. It had to heal on its own. We were made aware of what to look for, and informed of the risk to his ear. We hoped and cared for it, saving him from losing his outer ear.
By the end of that year, my brother had been declining in his physical health. He had been admitted to several different psychiatric facilities due to his “failure to thrive”. He was stressed, easy to anger, and was malnourished on top of his psychiatric and physical diagnoses. He refused to eat, even his favorite foods (double stuffed oreos, peanuts, cashews, and Tyson honey barbecue chicken nuggets - microwaved not oven baked) were no longer of interest.
After his hospitalizations, some medication adjustments, and vitamin replenishment injections (he had a severe B vitamin deficiency that needed IM injections to raise due to his gastrointestinal diagnoses), He was legally required to go back to school at Variety.
Again, we pushed the limits of truancy and pushed our family law attorney for any help he could offer. He attended every single IEP meeting, and thank heavens he did. During one of the meetings, a large thud could be heard.
“I am a mandated reporter, I’m investigating that noise.”, my mom said and left the room.
The classroom it came from was my brother’s, the classroom and meeting room shared a wall.
Everything appeared in order on investigation, but it didn’t assuage anyone’s concern nonetheless. Turns out we were right to be concerned.
A few weeks go by uneventfully, a scratch or two here or there, but nothing seemingly major. So you can imagine my mom's surprise when three Las Vegas Police Detectives showed up at her office. They cleared the waiting room and asked for my mom to come down to the station with them.
“Dr. Moore, we regret to inform you Dennis has been abused by his school staff. We placed hidden cameras in the air conditioning vents and Dennis was one of the main targets of the abuse.”, the detective told us.
“We suspect the disabled children were made to fight each other, it explains the burns and branding marks.”
“When the students could not be safely restrained they were thrown against the wall.”
“When students wouldn’t listen they’d be pulled by the ear to the next activity. If they protested they’d be dragged kicking and screaming by both ears to the closet.”
“Sometimes he’d be locked alone in the dark closets, sometimes with staff in the closet with him. We have no evidence of sexual abuse on film, however it is a possibility you should be informed of.”
Well that explained Dennis’s newfound phobia of dark enclosed spaces. It got to the point we couldn’t leave the house after sunset, the dark was just too scary.
We’d heard enough. Truancy be damned, they would accidentally kill him if the abuse had continued. That day was the day we decided to leave Las Vegas.
My mom closed down her business, filed for emergency full custody, and filed for a new medical license in Massachusetts. My grandparents lived there, and we could stay with them until we got the appropriate support. We had no other realistic option. We lost our apartment and moved into my grandparents' summer house. We pulled the equity out of that house to survive the move and transitions, but risked foreclosure. While we waited for the day to move I was homeschooled due to my mom's work schedule and being unable to afford the private tuition of my catholic high school at the time. I became my brother's primary caregiver while my mom worked locum positions to try and make ends meet. With the support of my Aunt, we cared for Dennis and began to see positive small changes. He also developed MRSA during this time, which I caught from his spitting tics. We spent all our money we had on medical bills and treatments to clear the infection and abscesses that covered his body. It was traced back to the Variety School, as several others reported MRSA to the health department. It was the last physical injury Variety inflicted on my brother.
Eventually, we even stopped grocery shopping. My aunt had been a regular at Pete’s Bar and Grill for the last fifteen years and had accrued thousands of points. We ate there or in the doctors lounge wherever the food was free.
The move was rough, my brother had to spend 35 days in the isolation ward at Boston Children’s Hospital because when we arrived, his bladder had become paralyzed. His history of MRSA further complicated his status and he was placed on full infectious disease contact precautions. The nurses and medical staff dressed in “spacesuits” (the PPE we’ve come to see due to COVID), I am sure only heightened his anxiety. However, this admission marked a major turning point in his life and medical treatment. We had finally arrived at a facility that could honestly tell us, “We’ve seen this before, and we know what to do.”
The battle was far from over however. Dennis continues to struggle to this day from the abuse inflicted by the staff he was supposed to trust. He has struggled with night terrors with altered levels of consciousness and other scary symptoms. His brain likely has residual permanent damage from the trauma inflicted, and has been present on his scans since the injury. While now that trauma is likely fully healed, the physiological “memory” of the injury is still present through scar tissue and PTSD.
However, with the proper care and support I am happy to say my brother is no longer bound to a wheelchair, hasn’t needed a protective helmet, or four point restraints while traveling. He has made leaps and bounds that we never imagined. His OCD makes him the best student in his employment education classes, and he loves to volunteer to clean or do janitorial duties within the community. Between cleaning the local churches, and receiving 24/7 residential support, Dennis has learned to love food despite the anxiety he has surrounding himself eating it. He regularly volunteers with Meals on Wheels and is a favorite amongst his clients for his polite and regular service. They don’t seem to mind that he can’t talk, and he really likes to listen to them tell him stories and their thanks. The opportunity makes him feel supported and connected to his community now. It’s a gift we couldn’t be happier for him to receive. The relief surrounding us has given us our life back as individuals and as a family.
I think this picture of us doing a Family Fun Run 1k, sums up our feelings:
My family running the Family Fun Run at Dennis’s annual road race. (From Left to Right - My Mom, Kate, and My Brother)
With Dennis’s pre-existing conditions, we should have been as cautious as possible to avoid concussions (of which we are certain he’s had), and traumatic brain injuries. However, school staff are supposed to be a trusted member of the community. It is not our fault the abuse occurred, and we as a family did everything we could to keep my brother safe.
My brother's traumatic experiences highlighted our focus on his neurological status. His yearly MRI scans have areas that show the damage and clear areas of change.
This is an understudied, under researched area of medicine. However, there is a clear correlation between traumatic brain injuries and abuse of all kinds. This area although understudied currently, is an emerging area in medicine as research is conducted and completed we can begin to understand its full impact. However we do know the following (Source):
People with disabilities are between 4x and 10x more likely to become a victim of abuse than a person without a disability.
Children (humans under 18 years of age) are more than 2x as likely to be a victim of abuse than a child without a disability.
Institutional children (children who attend day programs, or live in congregate care) are more likely to suffer repeated, unreported, long term abuse. Often, institutional settings create an environment where patient on patient violence not only is encouraged, but perpetuated.
Community resources for abuse victims are not designed for handling patients with a disability. This includes medical staff as they are not often trained in spotting signs of abuse in the disabled population; especially with non-verbal disabled patients.
Abuse isn’t always physical either, despite it’s presentation. What I mean by this I can explain through example: We suspected Dennis was suffering from abuse at another facility later in his care; he was displaying physical symptoms and behavioral outbursts uncommon to his demeanor. We hired a third party investigator who was able to confirm Dennis was suffering abuse through neglect from staff. If you asked for food politely 43 times and were denied, how would you react? That happened to my brother and staff refused to feed him an appropriate food option. The same can be said to female non verbal disabled patients. This category is of high risk for continued sexual abuse since they can’t verbally report the abuse. Often abused girls will display physical symptoms such as fever, variable/bladder infections, abdominal pain, pelvic pain, and an elevated white count. However this physical abuse can also manifest in symptoms such as a heavy interest in hearing about private bodily functions, an aversion to bodily functions, regression in toileting/showering skills, and emotional outbursts (that may or may not turn into a physical outburst).
Men are more likely to be perpetrators of abuse against disabled females, and the opposite is said for males. Families tasked with providing long term and strenuous care are more likely to commit some form of abuse on their disabled children, when compared to non-disabled peers.
There is a lot of stigma surrounding “Disabled people are not able to understand and be impacted by abusive treatment.” This is just simply not the case in 99% of cases and would really only be applicable with certain exceptions (ie people in a vegetative state or are brain dead). However, this still is unacceptable because our most vulnerable members of society should be the ones with the most protection. Also, no one should be abused regardless of their gender, race, ability/disability, etc. Let me be crystal clear where I stand with this issue: no one should be abused in any manner, ever.
Unfortunately, geography also is a factor in assessing the risk of/for abuse in a patient/client. Often, comprehensive resources are located in affluent neighborhoods and some are needs based. The lack of funding and living in more rural or “high crime neighborhoods” raise the risk of that patient/client being abused. This issue ties directly into another hot topic issue:employment. Those who are unemployed and disabled are subject to treatment based on a needs assessment that calculates their socioeconomic status. This determines the amount of free/subsidized, or reduced cost care that person would receive from the government. In other countries with universal healthcare the risk is slightly reduced since there are low barriers to access appropriate medical care.
Brain trauma in the form of traumatic brain injuries also raise a person’s risk for abuse due to several factors. Depending on the location of the injury to the brain patients with a TBI may experience difficulties regulating their emotions, bodily functions, and communication abilities. These symptoms are frustrating for the patient and very much so for their caregivers. The misunderstanding of the severity of TBI’s add to the caregivers frustration providing the fuel for potential abuse. Lastly, TBIs can alter a person's sense of reality furthering the difficulty a victim faces in reporting abuse.
Abuse in certain circumstances pose very specific risks to its victims. Falling pregnant from rape, contracting an STD/STI, contracting HIV/AIDS, and sexual dysfunction are hallmark risks to people suffering sexual abuse and coul become life threatening and go undiagnosed. This happens when a disabled person presents to the ER and the family gives their background. Of course you know that your child or family member may abstain from sexual intercourse and report that they are not sexually active; unaware of abuse that could be happening while not under their care. In the case of a parent sexually abusing their disabled child or family member, may go to great lengths to steer the conversations away from intercourse and sexual contact as a possible cause for the presenting problem. Doctors and medical staff are not perfect and cases DO get missed, it’s important that if you are suffering from abuse or suspect it that you tell someone or advocate its possibility on their behalf to the medical staff.
I wish that the correlation between abuse and disability did not exist, however my wishes don’t change the facts. I know that this is a hot bed issue with no easy solution. The best advice I have is to be educated as a parent or guardian to the abuse risks your child or family member may face. Once you are educated, consult with trusted psychiatric providers for advice on explaining bodily autonomy and function at an intellectually appropriate level to your child or family member.
But, really what can I do to protect my kids and those I love?
The way I recommend this starts is by introducing the idea of “My Safety 5”; let's break it down.
On a piece of paper, write the names of the 5 people you would trust to see your child/family member undressed. They should be: family (mom, dad, older trusted siblings), approved at home care providers (home health staff, babysitters, nannies), medical providers, and others you deem appropriate (i.e. grandma, grandpa, aunts, uncles, approved by you).
Once you have the list, inform the members that they are in your child’s Safety 5 (the five people your child can go to and receive care from). Ask if they have questions or if they feel comfortable being designated as a Safety Adult. Remove anyone uncomfortable with the responsibility from the Safety 5 and reassess the interaction level YOU want your child or family member interacting with them; they said No for a reason, and there’s no harm in skiing for an explanation.
Using appropriate arts and crafts materials, create a Safety 5 board with your child/family member. Use both the pictures and names on the board of the members in your Safety 5. Trace your child’s hand on the board (i recommend using their favorite colors, or calming colors for this activity.). Then attach a Safety 5 members picture and name to each finger with a glue stick. As you do the activity, review each member and when they should be sought for help. An appropriate conversation may look like:
“Thank you for doing this fun activity with me! As you grow and learn it is important to understand that everyone needs help with things. As a baby, you needed me to help you change your diapers and make you food. Well, we need to talk about new things you may need help with. As you get older your body will grow in new ways that might be a little scary at first but are completely normal. Other people may see your body changing and want to befriend you. If they are not in your safety five they are not allowed to touch you outside of (set appropriate contacts like hugs or other greetings). That will be the family rule. You are also allowed to say No to these hugs or greetings if you don’t want them. It is okay to just wave, high five, bow, or say Hi instead. If you make that choice I will support you and tell them that they need to keep their distance.”
Take a small moment, see if they have questions or need a break from the activity/conversation. Then continue:
“Mommy (or other figure) made this list as your Safety 5. These are people I trust to take care of you. These are the only people that are allowed to see or touch you when you need help or to check your body’s health. I trust that these 5 people are good choices, but do you have any worries about this?”
Listen and field their questions or concerns. If they do not agree with your choice for a valid reason (“they talk very loud when they are upset with me” is a valid reason), acknowledge their discomfort through gentle questions, reassurance and/or compromise (ie: Grandma is in our Safety 5 because she is a trusted adult. She is older and her ears are tired of listening closely to people’s words. It is a little scary for grandma, so she talks very loud to make sure people can hear her. How about I ask her to put on her listening ears (hearing aids) when you want to talk to her, or when she comes to babysit?) Having these conversations in this manner builds trust between your child/family member and you. Respect their answers to your questions and ask them questions to evaluate their understanding. Adjust and re-explain any misconceptions as they arrive.
This dialogue is one that should be continued at an AGE APPROPRIATE level as your child’s/family member’s body grows and changes. This above conversation can also be paired with another hands on activity called the Swimsuit Lesson and provide your child/family member with an excellent opportunity for understanding their bodily autonomy. The Swimsuit Lesson is available as a book with parent education materials, and is surmised below as follows:
Select a gender appropriate representative toy - my personal favorites are the body type, age, and race considerate Barbie and Ken dolls, however appropriate substitutions can be made.
Invite your child/family member to play “Dress Up” with the doll as if they were dressing themselves to go to the beach.
Explain to your child/family member using age and intellectually appropriate language the body parts that are covered up by the swimsuit. Take this as a moment to teach proper anatomy for their birth gender. This is a really critical step. Vagina, Penis, Breasts, Chests, Behinds, etc. are not dirty words! Educating your family member or child about the appropriate names of these body parts eliminates confusion by all parties. As an example, Imagine hearing, “My uncle ate my cookie.”, as a teacher, sounds innocent right? Not so innocent if your family interchangeably uses “cookie” for vagina. Proper anatomy is critical.
Refer back to your Safety 5 with your child/family member. Explain that everyone feels vulnerable and only under specific circumstances should the areas underneath the swimsuit should be accessed, ie: a parent/care provider helping them bathe, undergoing a physical exam at the doctors office, having the school nurse change a dressing around an IV or stoma, the list can be as extensive or as simple as you would like to make it.
Teach the importance of, “No!”. This can be done using sign language, verbally, or using a text to speech program. Underline the importance of saying No, and when they should say it. You can practice at home by asking, “Would you like a hug?”, and having your child say “No!”, and then having an appropriate response, “That’s okay, I can see you do not want a hug. How about a high five or a wave instead?”. This teaches them that anyone can say No and what it looks like when their wishes are respected. Building trust at home gives you only so much protection, however an ounce of protection is worth it’s weight in gold. If you prefer you can role play with the Barbie dolls (or other toy) instead.
The message should be crystal clear, any body parts that are covered by the swimsuit are off limits for anyone to touch, outside of the specific circumstances you set within your Safety 5. However, it is still critical that those in the Safety 5 understand that respecting the body of who they care for is essential to their growth and development. Anyone in your Safety 5 should always ask before touching, here’s an example: “Hi there! My name is Carol and I will be your nurse today. Is it alright if I look at your central line?” A central line is placed within the chest, inside the swimsuit area, and provides an excellent example for appropriate contact, communication, and delivery of healthcare. This would be an example of appropriate contact and touch in the swimsuit areas.
REVIEW appropriate conduct measures within your Safety 5. Establish a protocol that if your child reaches out to them for help that they follow the rules and guidelines you have established to ensure their safety; then have them contact you or their primary guardian to debrief. Communication amongst the Safety 5 is critical, keep that dialogue open. If comfortable, share with them your established care plans that you’d follow at home.
Communicate your expectations clearly and with appropriate language to your child/family member as they continue to grow. Keep the dialogue open, calm, and continuous. Prepare them for difficult situations before they arise, and show that you are a trusted adult. An example of this I’d like to share is as follows:
Guardian/Parent says: (Family member’s name here), we are going to the doctor today for a check up. Now that you are 13 your doctor has told me that we need to do a full physical exam. Let’s talk about it so it's not a surprise. The doctor is going to ask me to step out of the room this time, and I remember your doctor is in our Safety 5. The doctor needs to see your entire body to make sure you are growing up to be healthy and strong! Today, they will check your chest and your private areas (or preferably use anatomy specific language of breasts, chests, vagina, penis). They are going to look with their eyes in these areas, and only touch you if they are worried you are unhealthy. Then they will come get me and we will talk about how best to keep you healthy or fix anything they find.”
Unsure how to broach this topic with your family member or child? Ask their medical provider to assist you in the conversation. A pediatrician or family medicine doctor is an excellent resource for you as a parent or guardian. Often times they have already had parents ask for advice on the “sex talk” and other difficult conversations. Most have advice and would be happy to help you. If not, they can refer you to the appropriate provider for help such as an OBGYN, Psychologist, or Sexual Health Nurse.
These conversations I know are difficult for parents and guardians. There is a lot of anxiety and apprehension surrounding them, and that is understandable. It is difficult to realize that your child or family member has a body that may not match their mental age or intellectual stage. However, as much as we want to protect them as their parents or guardians, we cannot protect them from the biological advances that time drives. Puberty is a necessity of life, just as much as getting your wisdom teeth removed, paying taxes, and going through menopause, are. It is a normal life stage that when addressed appropriately reduces anxiety and fear in your child/family member. We have a responsibility to care and protect them, and surely have had to make previous difficult decisions regarding their care. I am sure that you have had to have difficult conversations before too, be it explaining their diagnosis, or treatment, etc. These conversations often are more difficult for the parents and guardians than for the person hearing and learning. You see, they are already experiencing the looks, stares, and stigmas associated with being disabled, and on top of that their body isn’t performing as they’d expect or hope. The anxiety this can create can be alleviated for both of you by following these steps, and having the difficult conversations. They build trust, and provide comfort for all parties involved.
Brain Health isn’t restricted to the physical trauma that is visible through imaging and physical symptoms. Mental health is just as important as the physical health of your brain! The steps I have highlighted above nurture both their physical and mental health, and yours.
You as the parent, or family member can also set the example by treating yourself the way you are hoping to see your children take care of themselves. You can do this easily by: wearing a bike helmet and appropriate safety gear, wearing your seatbelt, staying hydrated, exercise regularly, go for check ups, sleep well, and maintain your blood pressure. Self care goes a long way in many directions so make sure that you are taking care of you as you care for others!
Have you or someone you care for been in a similar situation? Feel free to share the tips and tricks that have worked for you in the comment section below! Looking for more information? Feel free to browse the linktree below for more information, support, and guidance under the “Brain Health Resources” tab.
