Chatting With Marcus Boyd

Warning: References to physical abuse may be triggering.

A few weeks ago, I had the pleasure of chatting with my friend, Marcus, who is an amazing human being. Marcus Leonardo Boyd, 37, Dad, Activist, Music Composer, and Producer. What I admire most about Marcus is his love for who he is and what he stands for. Marcus is autistic. He was non-verbal, unable to take care of his personal needs, and experienced uncontrollable outbursts. He was told that he would always need care. Marcus’ Grandmother thought otherwise, "Nobody knows but God."

There was little understanding of autism when Marcus was diagnosed. I dare say, on some levels, there has been little progress since. Marcus was enrolled in talk therapy. He thought it would be an outpatient program. What happened to Marcus is hard to describe, so I’ll say this. Marcus underwent a series of therapies that should never have happened, and if autism were better understood, would never have happened. Too often, the unspeakable is woven into daily life for the disabled, and It does not matter if the disability is visible or not. The same seems to happen time and again. It is the price we pay for living in an unapologetically apathetic society when it comes to disability. 

Marcus doesn’t like to talk about his past much. I understand. It’s hard to relive the unthinkable. That said, being able to purge the pain also heals. A good friend, Rafiya Muhammad, encouraged Marcus to talk about his story. He was reluctant but did it anyway. While he talked, Rafiya recorded it and created a work of art in the form of a docu-short about his life, My First Word. At the time, Marcus didn’t understand how his story would touch the lives of so many people. 
I’m glad Marcus had the courage to look into his past and take hold of his future.

My First Word (trailer), A 65 Street Production

Warning: Possible triggers

My First Word shines a light on mental illness, a common comorbid condition in adults and children diagnosed with Autism Spectrum Disorder. Depression in ASD adults is diagnosed at a rate 4 times higher than that of the general population. Having a dual diagnosis of ASD and depression is thought to increase medication therapy and caregivers' need with an increased risk of self-harm and suicide.

I asked Marcus to describe what his depression looks like. "Me sitting in my room alone with the lights off, sitting in a corner listening to the same sad song over and over again. Not eating. The longest I’ve been without eating is 6 to 7 days. Sometimes I eat too much, binge eating sporadically." 

What causes depression for you? Feeling unwanted, unloved, non-supported, rejected, neglected, and bullied.

How do you come out of it? I stay in depression mode for a period of time. It could be days. Gospel music and God helps out.

Have you used any services to help with your depression? I have utilized therapy for many years, from the age of 5 to 24.

I hope autistic people experiencing depression and anxiety read Marcus’ story and find the courage to seek help.

Once you taste independence, there’s no going back.

"It’s not easy dealing with autisms on a daily basis," Marcus says. “It’s a neurological disorder. People don’t understand the way that we think, how we react, and how we process, or how we learn. It’s not easy. It’s not easy being completely independent. Everybody says to you, you are an adult, you should have a job, or you should have your own place and all this other stuff. It’s much tougher not being able to conform to the 9 to 5 traditionalism."

Marcus also talks about an uncle who lived with his grandmother for as long as he can remember. There was never a discussion or question of the possibility of his uncle having a diagnosis, but everyone knew that there was something. It was not a big deal. "Everybody loved my uncle. We knew when we visited my grandmother that my uncle would be in the 3rd bedroom. That is where he always was. It didn’t matter that my uncle was very quiet. He didn’t have to make noise. We just knew where he was." Marcus’ uncle has never lived on his own. 

Marcus has lived on his own but recently moved in with family members for a short stint. We joke about how difficult it must be living with relatives again. I, for one, could not bear the thought. Marcus seems to be handling it well, though he is eager to be on his own. Markus doesn’t want to be like his uncle, living with relatives for the rest of his life. He has plans to live independently again. Once you’ve tasted independence, there is no desire to go back. "It’s part of being autistic, living with relatives. People don’t understand how hard it is to process all of the responsibilities of living independently. There’s always so much to deal with." 

No truer words have been said. It’s hard to live independently. The pressure is real and everlasting. I suppose it can be a blessing to have family members and friends to stay with periodically. 

“Malakai is not just my son. He is my destiny.”

Marcus recalls when his son was an infant. "The pregnancy was high risk, but we made it work. Malakai is a miracle. I have every ultrasound, every video, every photo, I got it. I have his one-year-old shoes, baby blanket, and the blanket he was delivered in. He’s more than just my son. He’s my reason for change. I like to call Malikai my destiny. If it wasn’t for him, I would not be on this journey. And I gotta honor his mother, Martina Knight. She’s a good mother. She sacrificed a lot for him and for me. She’s not my baby’s mother. She’s the queen to my son. That’s just what she is. Every night when she puts Malakai to bed, she tells him, 'You are smart, you are handsome, you are intelligent, you are a genius.'

"My mission is to be able to leave a legacy, not just for Malakai, but to be able to change life for her and him. It has nothing to do with romantic love. Let’s not get this confused. It has everything to do with God blessing her to give me my destiny. So it’s like this, how can we say we love and honor God if we are not going to love and honor the woman that gave us our child. No, I’m not in love with her, we’ve not been together for 3 years. If only we could stop hating the women that give us children, even if they hate us when we do wrong. It’s about us being children of kings and queens. My destiny will grow into the king that he is. 

"It took many years for me to get to this point. Sometimes we say we want relationships, but we are not ready for the long-term commitment of being in a relationship. For me, I chose the street terminology of a relationship. I’m the man. You're gonna listen to me. I didn’t put God in it. I put myself in it. I didn't know if we were spiritually yoked or anything. I looked at my son’s mom from a lustful sense. I didn’t look at her in an intellectual sense. I just wanted to smash. This is now the consequence that comes from it. Now I get her attitude before I get her happiness or acceptance. I didn’t enter into the relationship the right way. Most women, when they talk to you, won’t sleep with you on the first date because they want more."

"When Martina was pregnant, we worried about Malikai being born autistic." Malakai is 4 now and shows no sign of having autism or Asperger's. "We’re planning on having him tested anyway, just to be sure. We want to make sure he has everything he needs to be successful in life, whatever that looks like."

How did you feel about becoming a dad? I didn’t believe it. We took several pregnancy tests. I got excited after we confirmed the pregnancy.

What was it like after you bought the baby home? It was difficult at first. I had a lot to learn. My sister Darinda gave us a lot of help.

"I miss my son. I don’t get to see him like I want to. I want to be like the Bill Cosby or Carl Winslow kind of dad, the kind of a dad that writes messages on post-it-notes and puts them in his lunch box. I want to be super goofy with him. I plan on recording video messages and sending them every month so he can know how much he means to me. For now, my mom and sister get to speak with him often. 

"Malakai’s mom and I don’t believe in spanking. She’s raising him to be respectful without spankings. 

"Even though Malakai’s mom and I aren’t speaking right now. I know if she ever needs me, I will be there. She will always be family, and she will never have to worry about being hungry or homeless."

Malakai, like his dad, loves music. It was one of the few things that kept him calm as a baby. Malakai is proving to be musically gifted, and he loves to sing. His favorite song is Shake the Devil Off by Dorothy Norwood. Marcus swears, Malakai sounds just like Mike Tyson when he sings.

Do you have any words of wisdom for other dads? Parenting doesn’t come with an instruction manual. Continue praying, and have a circle of support. You have to have a good circle. You have to have family and friends around that won’t let you suffer fear and depression. You are not going to know everything at first. You have to take it one day at a time.

Marcus gives hope to other autistic dads who wonder if they can be good parents.

“Who asked you to reimburse me for love?”

There is the old adage, “Experience is what you get when you don’t get what you want.” Marcus’ life is rich in experience. It is through his experiences and by his sister Darinda’s love that he found faith. There was a time when Darinda was the only person Marcus would listen to. Marcus is always dropping pearls of wisdom faceted from his experiences and his grandmother’s determination to never give up on him. She made Marcus read everything she could get her hands on, always teaching and expanding his world. Grandma’s words and Marcus’ love of music are part of what shaped him into the person he is today. Marcus’ Grandmother died when he was 24. He recalls her final request.'Do not let your disability make room for anyone else at the dinner table.' "At first, I thought she was delusional. I didn’t know what she was talking about. Now I understand." Marcus’ grandmother was saying, 'don’t let your disability become an excuse, because everybody’s got excuses for why they can’t be great. If we both have the same excuse, we are both eating from the same dinner table.'

There is another person who made a major impact on Marcus' life. He was 3 or 4 years old when he met Dorothy Carr, his social worker. "Dorothy saved my life," recalls Marcus. Marcus was 5 years old when his dad beat him with a baseball bat because he was late coming home from school. Marcus’ dad hit him on his back. When Marcus fell to the floor, his dad continued beating him with the bat until his rib broke. Marcus was later admitted to the hospital. Teena, Marcus’ mother, did not visit him while he was in the hospital, but rather it was Dorothy who stayed by Marcus’s side. "She was like a godmother." Marcus was removed from his parent’s custody and lived in more than 13 foster homes.

Dorothy Carr’s was always near. Her love and presence were larger than life. "She wasn’t like other social workers." Dorothy did not offer superficial gestures of kindness. She gave Marcus unconditional love and opened her heart and home to him. "When her supervisors told her they could not reimburse her when she took me home or on family trips, Dorothy quietly said," 'Who asked you to reimburse me for love?'

"Dorothy Carr is the reason I love plus-sized women today." At 6’4, 225 pounds, a devoted wife and mother to 3 children. Dorothy was the epitome of love and protection. "For a long time, I had lost my faith in God. I could not understand why I got Teena as my mom instead of Dorothy Carr. She was always affectionate, kind, loving, and patient. Every time she saw me, she gave me a big bear hug, almost causing me asthma." 

"I’ll never forget Dorothy Carr. She saved my life, and in my heart, she is my mom."

Dorothy Carr is no longer with us, but like Marcus’ grandmother, she left a legacy of love.

Love truly does conquer all. 

Shake the Devil Off

To learn more about Marcus Boyd, visit:

Website: https://autismactivistmarcusboyd.com/ 

Facebook: https://www.facebook.com/marcus.stroizer   

Instagram: https://www.instagram.com/autismactivistmarcusboyd/?hl=en

New Beginnings

 

 

I am returning from a much-needed break from blogging. It was a hard decision that I’m glad I made. I needed to give full attention to life. It’s a good thing I did. I was fast approaching a crash and burn that I didn’t see coming.

Since receiving a diagnosis of Asperger’s Disorder in 2012, the journey of seeing myself through a new lens took flight. It has been and still is a challenge and a blessing. Beforehand, the only vision I had of myself was from the vantage point of my family. Except for the few who were interested in me and accepting my quirkiness, the general consensus has been less than favorable.

Several years ago, I decided I wanted to do more with my life. I wanted to help others like me. Advocacy was becoming an interest. Asking a simple question propelled me into many avenues. Some I grew to love and others I’m still trying to navigate. It’s easy to get lost in the current. The playing field registers as extreme to me. It’s vast, diverse, focal, global, communal, individual, spiritual, adaptational, confrontational, judicial. It’s depth upon the depth. A decision has to be made. Do I wade in the shallows or delve into the deep, and if not careful, someone will choose for me.

I wish I talked to someone before I lept. At almost every turn, my skill set was challenged, and it shook me to my core. Meanwhile, my son’s health was becoming more challenging. What started as an unexplainable, but treatable condition turned into a seizure disorder accompanied by a host of dietary sensitivities, multiple changes in foods, food prep, medications every few hours, and sleepless nights. I was at my wit's end, and the pressure continued to mount. That which does not kill us…

So here I am, almost 2 years later, ready to begin again.

It is November 2019. I started this blog in November 2011. From day one, I’ve struggled to find a direction, often making it up as I go. I envision myself standing at the edge of the world, staring at many paths, having no idea where they could possibly lead. Which one do I take? Like so many other times, I don’t know, but this time, I dare to find out.

 

 

It's The Little Things

It’s disheartening to hear so much sadness from parents who have children on the spectrum. I know days can be long and tasks arduous and I understand the feeling of isolation. I understand it all too well. I guess part of my sadness is knowing what it’s like to be the kid instead of the parent. I could sense my parent’s shame and embarrassment when my behaviors indicated I was anything other than the perfect child they wanted me to be. There were times when they’d rather not have to introduce me. It was easier for them if I were sitting in a corner reading or hidden away in my room.

Here I am, mom to my son who is also on the spectrum. When I look at him I see a precious blessing. On the hard days, I give thanks that God gave me plenty of patience and tenacity. The good days are filled with smiles and laughter and lovely moments as I watch my son skip and leap around our home. I wasn’t allowed to be so free when I was growing up. I wasn’t allowed to show who I really was. I welcome these things from my son. It’s an opportunity for him to express who he is in that moment and how he feels about the things he sees and experiences. I wonder, would he be so free if I felt shame and he knew it. Don’t think we don’t know how you feel. We do, even if we can’t verbalize it or not able to respond to it. We still know and it resonates with us for a very long time. Forever even.

Our children whether severe or otherwise are able to reflect the loving kindness that is showered on them. They can also reflect other emotions as well.  Just a few weeks ago I was getting ready for a presentation. My anxiety was higher than normal because I’d just learned that morning they were going to videotape the session. It was hard enough just dealing with having to present. Anyway, I was caught up going through all the steps, making sure not to forget  anything. Somewhere in the course of the morning ( I’m not sure when) my son went into my room and made my bed. He’s never done that before. When I saw what he did, I stopped and took a deep breath. What a wonderful thing my son had done. He knew how important it was that my bed was made. I usually make it as soon as I get out of it, but this morning was different.

You see, I’ve also had a few short-term health issues. My son was an infant when I had a major asthma attack. My mom came out to take care of him for a day. When she saw I was strong enough to crawl she left me to care for my son on my own. When he was a toddler I had pneumonia. We didn't have any help then. I managed to crawl to the kitchen to get cereal, milk, juice, and water to drag back to my room so I could feed him without having to leave my bed. He remembers. Even now when he sees my bed is not made it worries him. In addition to that my son also knows on normal days, I always make my bed. Clutter kind of makes me freak out. It’s very hard to focus when the lines around me are somewhat off. So it’s important to have things neatly lined up and my bed made. I went into my son’s room to give him a big hug and thank him for helping me.

I believe my son remembers some of what it was like when he was very sick, how I took care of him and watched over him day and night always reassuring him that everything was going to be alright. In his own way, he's returning the love. Whenever I’m not feeling my best he brings his stuffed friends into my room to watch over me as I sleep.

The things we don't speak about or even think that much about will be the very things our kids carry in their hearts and memories for the rest of their lives.

It’s the little things that mean everything.

 

Is your Child’s Care Provider Properly Trained?

One of the great dilemmas for many parents is finding appropriate care for our children. It’s hard enough in the most typical of situations. So how much more difficult is it when your needs are anything but typical? We’ve been very fortunate. My son has been receiving services for most of his young life. He’s had physical therapy, occupational therapy, hippotherapy, music therapy, community, training and respite care just to name a few. And like anything else, there’s going to be good and bad, ease and challenge. In as much as we are familiar with the process of picking and choosing whose charge our children will be left, it is no secret that the pickings are slim at best.

Are you familiar with CAP or Innovations Waiver Programs? These programs are federally funded and pay for services that regular Medicaid does not cover or may only offer minimal service. It’s through these services that I’m able to obtain a few hours of care and training for my son on weekdays and respite care when needed. I’m thankful for these services. Without them, it would not have been possible for me to work and take care of my parents as their health failed them. There were mornings when I’d drop my son off at his carer’s home at 4:30 am, take my parents to their various appointments, go to work and pick my son up around midnight. In addition to the long hours that were sometimes needed, my child was all but adopted by his carer’s very large family. He had an endless supply of playmates and play dates. I can’t begin to tell you how much I appreciated the level of care he received during those stressful times. She was one in a million. Unfortunately, we’ve had our share of carers on the other end of the spectrum. They were always kind but frequently called out sick, claimed the hours as if worked and unapologetically forged signatures on timesheets. Interestingly enough as we flitted through a few more carers it became all too obvious that the pool of choices contained more of the latter.

It’s becoming increasingly difficult for organizations to find good candidates to fill staffing needs. Oftentimes the candidates applying have a “barely there” work history, inappropriate training and a less than impressive attitude. 

The level of “training” does not support the standard of care required for persons having diverse needs.  In other words, in many cases, the “training” is inappropriate for many members of the population that is being served. I’m sure the overseeing bodies (MCOs) are aware to some degree but do they realize how inadequate the training is? Our children are in the care of people who are ill-equipped to provide the level of care needed especially in times of emergency.

Parents, we need to know what training is available to the people providing care to our children. Knowing if the trainings are well suited for your child's needs is just as important as knowing the care providers criminal history. It all comes down to being sure our children are safe when in the care of others.

Part of the required training that my son’s carer received is a training on what to do if you find a person unconscious, how to perform CPR, how to use AED (automated external defibrillator) and what to do in incidents of choking for a child, adult, obese and pregnant persons. All scenarios for the choking portion of training involved food items. There were no scenarios for what to do in cases of choking on liquids. As a young child my son had great difficulty with thin liquids and choked frequently. Once he took a gulp from a cup of juice his carer left on the table and chocked. I ran over to him to lift his arms and asked his carer to get a vial of albuterol and his nebulizer. The carer froze. She was not able to respond to any of my requests. I had to pick my son up and get the medicine and nebulizer myself. What would have happened if I weren’t there? My son’s QP (Qualified Professional) knew thin liquids were a hazard for my son. Why was this not discussed during the first aid training?

Upon further review the first aid training video I noticed there were no scenarios or mentions of people with physical or intellectual disabilities? Aren’t they the people services are being rendered to?! How is it that there are no references to disability during First Aid training for carers providing services for persons having disabilities? From what I can tell, there has been little thought or consideration for training on adaptive first aid methods. That being said, here are a few topics I’d like to see discussed during first aid training for the caregiver of persons having disabilities.

·       How to perform the Heimlich maneuver on a person who uses a wheelchair?

·       How to administer CPR or use AED (automated external defibrillator) on a person who uses a wheelchair?

·       What to do when a person having an intellectual disability appears to be going into cardiac arrest.

·       What to do if it’s not appropriate to ask the person having an intellectual disability if they are allergic to aspirin, have had a recent bleed or have stomach ulcers.

·       What should be done if the person needing help does not understand the questions?

Do you take a chance and attempt to give them aspirin anyway?

·       What should you do if the person you are attempting to help begins to fight because they are frightened and do not understand what’s happening?

These are just a few questions that come to mind.

What can be done? One thing first aid trainers can do while showing a training video, a pause during each section to discuss what should be done for individuals having physical or intellectual disabilities. Perhaps parents can be involved in the process by increasing awareness of the need for adaptive first aid training to be available for care providers.

I did a search for information on first aid for disabled persons and found very little. Here’s a video on how to perform the Heimlich maneuver on a person in a wheelchair?

How to Perform the Heimlich Maneuver On Person In A Wheelchair

This is could potentially become a desperate situation if we don’t make a motion to push for better training of care providers for disabled persons.

Making a motion toward the provision of cohesive services for disabled persons.

In Case of Emergency, Pt. 1

When it comes to autism the world is already overloaded with an incredible amount of facts, myths, and misconceptions. I don’t want to add to the overload. I do, however, want to share information that I find many people I’ve encountered don’t know or haven’t thought about. One such subject is what to do in case of emergencies. On rare occasions, I get to sit and chat with other moms who have disabled children. We talk about the usual drudgeries of housework, meal planning, work woes, endless errands and sleepless nights, but we never talk about emergencies and what to do. So I figure this is a great place to start the conversation.

My son is a teenager diagnosed with autism, epilepsy and is non-verbal. I’d like to think of my self as a fairly savvy mom, having all the checks and balances when it comes to my son’s needs. I even posted information on his bedroom door for what to do should he have a seizure along with my contact information in bold font. And then my son has a really bad seizure. I managed to keep my head together while talking to EMS and comforting my son. One of the Paramedics noticed the information I posted. He said it was good that I had information posted, but it would be better if I had more of my son’s medical history and medications posted as well. Until that moment, I had not given any thought to posting that much information because they could always get the information from me. What if I wasn’t home? Would my son’s caregiver know what information to give? No. She would have to call me or the QP (Qualified Professional)and hope one of us would be able to answer the call. I don’t ever want to be in that position. So I took the paramedics advice to heart and came up with this list of information to post.

Current Prescription Medications (List psychotropic medications first)

Non-prescription drugs/Vitamins/Supplements
Medication Allergies
Primary Diagnosis
Primary Care Physicians
Hospital of Choice
Medical Record Number
Insurance Information
Date of Birth
Guardianship Information (for adult children)
Experience with First Responders (good or bad)
Ability to tolerate exam and IV catheterization
Triggers/Behaviors
Interests/Methods for Calming
Choking Hazard
Dietary Concerns/Food Allergies
General Information
Next of Kin
Emergency Contacts (at least 3)

Another thing you can do is check with your local MCO (Managed Care Organization) or NAMI (National Alliance On Mental Illness) to see if CIT (Crisis Intervention Team) is available in your area. If CIT is available, check to see if they are trained on how to help patients and individuals having autism or other I/DD. It may be beneficial to request a CIT trained first responder when making a “911” call.

More information about CIT https://citdurhamnc.org/about/

When making a “911” call It is important to share pertinent information so dispatch can send appropriate help to you. Let them know the following:

If the patient is Autistic or has other Intellectual disability

Verbal/Non-Verbal
Best Way to Communicate with Patient
Ability for Patient to Understand Instructions
Triggers/Behaviors
Methods for Calming
If the patient is taking psychotropic medications
If the patient has experience with emergencies/first responders

You can also request that the lights and siren be turned off when they reach your neighborhood if you think it may upset your child/loved one.

 

Create your own Medical information list or use Vial of Life http://www.vialoflife.com/how_to_use_the_vial_of_life/. You can place it on your fridge, in your car, carry it in your purse or put it in an emergency kit.  Order as many as you need. It’s free!

Also, it would be a huge help for you have your medical information available should you have an emergency and an emergency kit for your child/loved one. Emergency kits should contain the following:

Contact Information

Medical/General Information
Medications (at least 1 weeks worth if possible)
Changes of clothes
A couple favorite items
Instructions for food preparations if on special diet
A re-loadable visa gift card for purchases

 

Library Installs Stationary Bikes to Help Kids Read

I think this is the coolest thing ever. How ingenious to install stationary bicycles in a school library. And though I think this is the best idea since sliced bread, I could not help to think about my fellow homeschoolers. How awesome would it be to have a similar set up in your homeschool. Can you picture it? Reading Bikes for Busy Tikes. I love it! Wait, I just thought of something; there's a toddler learning station that came out a few years ago. Fisher Price Think and Learn Smart Cycle

How clever someone to take a wonderful idea to the next level. Not only can a child learn while moving, they can also get plenty exercise. Perfect!

Here's video about the stationary bikes installed in a school library. The little boy interview was the sweetest part of the video. Library Installs Stationary Bikes to Help Kids Read

To my fellow homeschool parents out there, if you have a little one who's need for movement outweighs all else, consider incorporating movement into learning time. If you don't want to go the bike route you may want to try placing a mini trampoline (with safety rail) in classroom where they can bounce while learning. Try different things to see what works best for you.

For good bargains on used equipment visit Play It Again Sports. See if they have a location near you.

Never To Soon For Planning a Safe Summer

It’s never too soon to start planning for safe Summer activities. Information is now available on the AngleSense blog about research results on GPS systems and the positive impact these systems have made in families with children having disabilities. I've included the link below.

I don’t think it’s a bad idea to look into GPS systems for older/adult children or family member. Definitely, something to look into, especially while planning summer camps and vacations.

New Study Shows Why You Should Get Your Special Child a GPS Tracking Device This Summer

Best wearing options for AngelSense GPS tracking device

 

 

As we begin to settle into the new year, let us look into ways to not only increase safety for our children and loved ones but also increasing our quality of life. With a GPS system in place, you and your family will be able to explore new adventures while feeling more confident in your day to day goings.

Happy Planning!!