This fellow autism mom and Instagram friend is someone I met through social media when I was advertising my book on a neighborhood website, Nextdoor. She was interested in purchasing my first book, Trey the Chef, to build her son’s book collection. She was so gracious and sweet that we quickly built a friendship and stayed in touch. She has supported me with my business in ways some of my friends/family have not and for that I am appreciative. I am equally happy for her to see that her business, NotMad. Motivated is flourishing and that she has recently added a newsletter to send to her customers. I know she inspires me so I wanted to interview her so that she can be an inspiration to others.

1)       I know you have your own online business, “Not Mad. Motivated.”

a.      What inspired you to come up with the idea for this company?

I started saying “I ain’t mad.  I’m motivated.” many years before I started the company. The phrase was born out of the need for me to see pass my circumstances.  I was in an abusive relationship and I did not know how to leave it.  My fears kept me “paralyzed” but my faith kept me determined.  “Not mad; motivated. was my way of saying that I won’t give up.  It was my way of saying that I refuse to let my current situations control what my future will hold.

From the very first time that I said the phrase, I wanted to build a business from it; I believed that many people would be able to relate.  However, it was not until my youngest son was diagnosed with autism, in 2017, that I actually took steps to do so.   I wasn’t surprised by his diagnosis but it still affected me mentally and emotionally.  I started losing my passion for my full-time (paid) work as a Statistical Programmer.  My work can be very demanding, especially when there are approaching deadlines.  I knew that I did not want my time dictated by a career that was no longer fulfilling. I knew that my three sons, especially my autistic son, needed and deserved more of my time and attention.  I started Not Mad. Motivated., LLC to 1) build an income stream that would eventually allow me to increase the time I can spend with my family, 2) spread a message of hope, regardless of circumstances, and 3) establish methods to create more supportive communities and bridge them together.

b.      How do you balance being a business owner and a mom?

Overall, work-life balance is something that I work on daily.  My business has taken the backseat several times in the last 2-3 years because it has to compete with not only my family life but also my career.  This year, my goal is to plan better and get my children to do the same.  I truly believe that planning is essential to maximize my day, week, and month.  When I think about it, I am expected to work 8 hours per day, Monday through Friday.  If I actually slept the recommended 8 hours per night, I would be left with 8 hours to do everything else.  That is a huge expectation!

I have opportunities to create better balance by planning weekly meals with my sons.  This allows me to save time during the week by not worrying about “what’s for dinner?” every day.  It also allows me to spend time with my sons while teaching them the value of planning.  Another opportunity to create balance is making sure that my sons are being responsible for their chores.  When they are completing their tasks, they give me time to finish my work tasks.  Instead of me working and still having housework to complete, the tasks can be done simultaneously, giving us space for more quality time.

2)      What are your lessons learned being an autism mom?

One of my biggest lessons from having an autistic child to “celebrate often”.  This will be a recurring theme in my blog as I feel that it is important to find, even the smallest, moments to celebrate.  There are many hard times with my son; sometimes several in a day.  So, finding moments to celebrate makes the harder times a little easier.  I also try to keep my “Not Mad. Motivated” mindset when dealing with those hard times.  What lessons can I learn from this difficult moment?  These lessons, in themselves, are reasons to celebrate.

3)      I think self-care is important in being a mom, especially a mom of an autistic child. What do you do to practice self-care?

Having a cup of hot tea with my feet up after my sons have gone to bed is a regular for me.  It is a small act but it gives me time to breathe and relax.

A few times a year, I take a day off of work while my sons are in school.  That way I get about 6 hours of me time!  I might take myself out to a movie, a nice lunch, or I might take a much-needed nap.  I would also consider prayer a form of self-care; It may sound unusual, but it makes sense to me. I do plan to practice more self-care in the future.

4)      What sensory issues does your son have, if any? How do you help manage his sensory issues?

My son always wants something string-like to manipulate with his fingers.  It doesn’t seem too terrible but if he is ‘desperate’ to get his hands on something he will resort to using random hair.  It is also a habit that keeps him distracted from paying attention as much as he could.  To help manage, I try to redirect him.  I might grab a favorite toy or play some of his favorite music.  It is hard for him to resist the Gigglebellies!

He also has a thing with licking his hands.  I am not sure if he is seeking oral stimulation or if it is an act that satisfies a need for his hands. To help manage, I remind him to not lick his hands and I will lotion up his hands in case they feel dry.

He seems to enjoy loud sounds and he loves tight hugs and jumping.

5)      It has been said that when having an autistic child, it is important to have ‘dates’ and spend quality time alone with your neurotypical child/children so they don’t feel neglected. Have you tried this with your sons? Do you have a hard time balancing the time evenly between all your children?

Balancing time between my children has been difficult.  My middle son (age 9) was only 19 months old when my youngest son was born, so he did not have a lot of time to be the baby.  He is the one that I have the most concerns about as far as attention.  He loves history.  One thing that I do to spend quality time with him is to watch some of his history shows with him.  To be honest, I have learned a lot just hanging out with him.

I do try to spend one on one time, but I need to do a better job at building the time into my daily schedule.  You know, treat it like a meeting that I can’t miss.  As a matter of fact, I am adding alarms to my phone right now for dedicated time for them, even if it is just five minutes.

6)   How involved are you in the autism community? How do you give back to those families impacted by autism?

It is hard for me to measure my own involvement in the autism community because I know that I want to be more involved.

One thing that I like to do is to buy books by autistic authors.  I feel like it is important to “hear” their voices and support their talents, creativity, and desire to support themselves.  I like to “double down” on support by gifting some of these books to my son’s classroom.  I feel like autistic authors can serve as examples to the younger generations and I love the idea of the book being a bridge between them.

I also like to buy books written by parents of autistic children, because us parents have to support one another!  I am actually in the process of starting a Facebook group called “Creative Parents of Autistic Children”.  My goal is to have a place where parents can showcase and promote their works of art (written,  visual, crafting, etc.)  that they create as a stress-relief hobby or as a business to supplement their income.

As far as my son’s classroom, I heavily promoted and donated to Donor Choose projects to help get much needed tools and materials.  I also helped his class extend the number of specials that they had in school.  Previously, they only had physical education but I asked about them having music as a special.  Then, they started going to art and outdoor education.

7)      What is your opinion on the vaccination-related injury debate about the possible link between certain vaccinations and autism?

This is a hard one.  My son’s autism is thought to be a symptom of a rare disease called PTEN Hamartoma Tumor Syndrome, which was determined through genetic testing.  He has a gene that is coded incorrectly to STOP the production of Arginine (an amino acid that is used in the biosynthesis of proteins).  Having this knowledge made me believe that his autism was present before his birth. However, I do understand that there are events that can change a person’s DNA.  Maybe his PTEN gene was damaged after getting vaccinated.  Or maybe it was damaged before he was born.  I really don’t know.  There could be a possible link but I don’t know enough of the science to be certain of it.

Side note: You can read about PTEN Hamartoma Tumor Syndrome here.

Macrocephaly (large head size) is found in 94% of measured patients with PHTS and can be a helpful screening tool to identify patients for PTEN testing. In most patients, large head size is caused by overgrowth of brain tissue. The head shape also tends to be longer than wide (dolicocephaly).

Autism and other developmental disorders, such as intellectual disability and developmental delays, have been observed in patients with PHTS. In previous case series, up to 17% of children presenting with macrocephaly and an autism spectrum disorder alone were found to have an underlying PTEN mutation.

8)  If you could accomplish everything you set out to accomplish, what do you want to be your legacy?

I want my legacy to be one of empowerment, compassion, and support through faith.

I want to make the Not Mad Motivated mindset contagious.  I want people to know that they are not powerless despite the circumstances that they find themselves in “today”.  When people achieve their dreams, I want them to have compassion for the next person who hasn’t even started dreaming.  When we can encompass our lives in faith, we know that our success is not threatened by the success of others. That’s how we begin building communities of support.

To check out more on her company, please visit NotMad.Motivated so that you can view her blogs and merchandise.

In addition, since we are talking about legacy, let’s consider what legacy we all are leaving behind in the wake of the tragedy of Kobe Bryant, his daughter Gianna, and the other passengers of that helicopter that crashed on January 26th.  Time is not promised to us so if there is something we want to do; we need to act like there is no tomorrow. I have had some close calls with death, which leads me to believe that I need to live a fuller life and really take more risks to accomplish my goals. I can’t wait on tomorrow or next year or the next decade to “take this bull by the horns.” I need to seize the moment and really put my energy into building my platform in order to help the most vulnerable; children. I encourage all of you to discover the passions inside of you so that you can make the next move. I will leave you with an inspiring quote from Kobe: The most important thing is to try and inspire people so that they can be great at whatever they want to do.”

That’s the plan Kobe, that’s the plan…

Well, to say it was not pure chaos, is an understatement. I mean, long lines to stand to get candy and loud, noisy children darting from one store to the next. Trey probably sensing the chaos, started to get riled up. He is not sensory sensitive (otherwise I would never have taken him to the mall) but he IS sensory seeking. Loud noise and chaos actually stimulate him to the point where his behavior becomes unmanageable. He starts to jump and make loud noises in response to other loud noises. I tried to manage him by talking to him and telling him to stop jumping and to be quiet, but it didn’t work. He was in his groove and you could tell he did this to get out of the situation. He did not want to stand in line and he was not interested in any candy (he does not have a sweet tooth like his brother). The more I tried to calm him down, the worse he got. Eventually, my husband said to me in his quiet deep voice but with a stern tone, “Kira, he is special needs.” I don’t know if it was his tone or what he said but I stopped. I stopped immediately. I stopped nit-picking at Trey’s behavior and trying to get him to be like all the kids, excited and patiently awaiting their candy. I eventually left my son and husband in line and took my other son to the other stores to continue on but I realized in that moment that Trey does not have to behave like the other kids because he is NOT like the other kids. I had an unrealistic expectation that he act “normal” and do as he was told in what was an impossible situation for an Autistic child to act normal. I was actually lucky that this situation had not cause irreparable damage to my son. I need to stop expecting my son to be ‘perfect’ in these very challenging situations. It is unfair for me to have such high expectations for him. I need to be more realistic.

I challenge you as parents to do the same. Do not force your neuroatypical children to be in situations you know they would rather avoid for the sake of pictures, social media, or them appearing normal. Do not get my wrong; there are certain things that your children have to do such as school, church, family get-togethers, supermarket etc. but if it is not necessary and causes your child harm and discomfort, avoid it. If you have to take your child to an event and they act up, it is OK. People such as the general public need to be more understanding of your child’s actions and limitations, not the child having to change to make others more comfortable. I am learning a lot as I journey through parenthood and having a special needs son and I am so glad for the lessons I have learned. I hope you feel the same and come to an understanding and acceptance of your child’s special needs in this complicated world we live in. Also, if I can give you any advice…Skip the mall trick-or-treat, lol!

Love and light,

Kira

 

1) What was your experience like being an Autistic individual? When were you diagnosed with Autism? Do you recall the first time that you noticed that you were different? How were you treated by your peers?

 

I’ve had an amazing experience!  My life has been extremely rewarding and full of adventure.  Sure, there have been rough spots due to my autism, but overall I can’t complain and I wouldn’t change a thing.  Being born in Canada, surrounded by many different cultures, relative peace and so much nature, helped me to become who I am today.  I was diagnosed a few years ago.  I’ll be forty-five in just over a month.  I knew I was different way back when I was three.  I had hyperlexia but could read with full comprehension, I preferred to play alone, and I had pretty prominent sensory issues.  My interests didn’t align with my peers’ interests but we got along.  Imitation was my thing in social settings.  I had friends who had cool characteristics and I guess they thought I was cool enough to hang around because they thought I was smart.  My peers were tough on me but we were all tough on each other.  We grew up in a tough environment.

 

2) What supportive services did your parents put in place to support you as you were growing up with Autism? When looking back, were there some services that you wish you had that were not available at that time?

 

There were no services that we were aware of.  I grew up in an underprivileged area.  There were always kids to learn from and I had my siblings.  My older brother and sisters taught me everything they knew.  I remember following them everywhere.  They’d ride their bikes and I’d run along behind them.  They said I had limitless energy.  I see that now in many of my clients.  My parents put me in activities to help me socialize with a variety of people.  We had this pastor in the area who would gather up all the low-income children and take us places as well as teach us arts and crafts.  He was a good guy and a god-send in my area. However, my biggest influences were my family members.  My mother has 11 siblings so my siblings and I were always with aunts, uncles and cousins.  They taught me life and had very high expectations of me.  They accepted me for who I am but always let me know I could achieve whatever I set my mind to.  My father used to look at me with so much love and tell me I was a strange kid.  Weird, but my father loved my different ways.  It made me feel great about myself.  I come from a long line of leaders, artists and professionals.  I didn’t get any special services but I think I got the best “therapy” which was reality with a healthy dose of encouragement to be the best I could be.

 

3) What inspired you to get into your line of work? What steps did you take? What do you find to be the most rewarding? Most challenging?

 

School was always easy for me.  I actually applied to university at the end of the tenth grade but was rejected.  Long story short, I was offered a spot in a gifted school, when I was in the first grade.  I would have graduated med school at eighteen.  My parents refused.  They wanted me to live a normal life, and I’m thankful.  I had my first child at sixteen and I wanted things to move a little faster once I became a father.  After high school, I moved to Toronto with my sister and brother in-law to attend college.  I took medical courses in hopes of becoming an oceanographer focusing on orca whales.  At the same time, I took a psychology course but didn’t take it very seriously.  Later, I realized that this course would change my life.   After community college, I was accepted to a university for applied chemistry and biology. Chemistry was always my highest scoring subject but biology is my love.  The day I went to register, I received a letter from the university that rejected me in the tenth grade.  They invited me to study psychology with them and I’d get a year and a half off of my degree requirements because I did so well in that college psych course.  I accepted their offer just to show them they made a mistake by rejecting me years before.  I ended up falling in love with psychology.  I was on tour, promoting my album as I finished my studies at university.  I knew I didn’t want to do another full album and was ready to focus on my psychology career.  I took a vacation after touring and when I got back home, I picked up the newspaper and there was an advertisement for behavior therapists.  I went and that’s where I met my mentors, two psychologists.  There were so few males in the field at the time in Toronto so a male mentor took me under his wing and two months later I was promoted to senior therapist.  Four months after that, I was offered a promotion as a clinician.  I prefer to work directly with the children because they never place judgement or expect you to be something you’re not.  So I declined the promotion and parted ways with my mentors.  We remain friends to this day and I still have the utmost respect for them.  There are the most amazing psychologists I’ve ever worked with.   I just wanted to go in a different direction.  I joined up with a few large government agencies in Ontario and learned a lot, and accomplished even more, but it wasn’t what I wanted.  I needed to do more and know that my service was actually helping.  The most rewarding thing about my career is seeing the families grow together.  I’ve met parents who told me their child isn’t human.  I’ve had extremely wealthy parents who work excessive hours just so they didn’t have to be home with their child.  All great people who simply didn’t know who their child was/is.  By the time my work is finished those same families are completely turned around. They are so full of respect and understanding, and actually excited to take time off to vacation abroad with the children!  It’s the most amazing feeling to know I’ve played a part in making their dreams come true.  The most challenging part about my career is working with adults who don’t have their child’s best interests at heart.  I’ve worked with kids with no limbs, no vision, no words and ample aggression.  That’s challenging but it’s nothing compared to an adult who isn’t focused on making life enjoyable for a child.

 

4) Where do you think there is room for improvement when it comes to supportive services for those with Autism?

 

There’s a lot of room for improvement in delivering services that actually help. Families feel alone, helpless and unheard.  I’ve listened to so many accounts of how speech therapy does so little or don’t target exactly what their children need.  I’m told of behavior teams who implement changes but don’t even know the child or the family.  It’s rough out there for services.  There are incredible therapists getting amazing results but there are so few and far between.  I was trained to write curriculum.  Why aren’t teachers and classroom assistants being valued enough to lighten their workload and get them the training and help they ask for?  There are so many ways services can be improved but I think the only way to do that is to ask autists and their families.

 

5) Tell us about your method of autistic engagement. How did you come up with this method? What success have you seen with the individuals you work with?

 

My method is quite gentle.  I developed it based on what made the kids happiest and most engaged.  If a child is interested in what you’re doing, you never have to ask them to look at you.  If you play games they like, you don’t have to ask them to play.  They’ll ask you.  If you make a child smile, they’ll make others smile.  I incorporate all of the things we need to be well- rounded, productive, active individuals into games.  This is nothing new and there are many who attempt it.  It usually works for me.  I truly get to know the person and their lives.  I live it with them.  I help them fill in any skills they need to become better people, as defined by them.  I simply ask them what they’d want life to be and then I help them get there.  I’ve traveled the world, to places others might refuse to go, working with different cultures.  So I’ve created a method that respectful to all people.  I focus on home first.  By making sure home is good, we build the confidence to venture out into the community successfully.  Given what we know about autism, sometimes I need to listen with my eyes, see with my hands and feel with my heart.  This might mean I spend the night on the couch so I understand what mom means when she says Billy hops at night.  Sometimes I need to go grocery shopping with the family to understand dad’s anxiety.  I enroll in swim class just to understand how the instructor speaks to his students.  I live it with them.  I can’t even begin to understand if I don’t live it.  Because of my experiences with autism I’m better able to give insights about why stimming is so helpful or what it’s like to hear things others can’t. I’ve had tremendous success over the years.  I have seen so many empowered, loving families all over the planet.  I feel so welcomed by each family member.  I’ve attended graduations, and witnessed many achievements with my clients/friends.  Each success I witness is a success of mine.  It’s an unbelievable feeling to see a kid I met when they were a baby, now heading off to college, getting a promotion at work, or even just taking the bus for the first time.  Success for some may seem simplistic to others but the things I see my clients achieve means the world to them and everyone who cares for them.  I’ve heard so many kids say “mom” for the first time!  I have seen others ride a bike after being unable to walk most of their lives.  Success is everywhere in my life and I’m so incredibly thankful to be able to see it.  I’m still friends with most of the families I’ve worked with.  I get updates all the time and it makes me unimaginably happy.

 

6) How do you find visual supports such as picture schedules, Augmented Alternative Communication apps, etc. to be helpful in working with individuals who have autism?

I love them!  I’m such a visual person myself.  Visuals reduce a lot of anxiety, for me.  My wife would tell you that I list everything and if she needs me to remember something and tell her later, I tell her as an image I recall. I use visuals all the time, we all do!  Road signs, clocks, logos, visuals are everywhere and are extremely helpful.  Why not use them?  I sit on the advisory board for an international AAC app.  I love it all.  It helps everyone to communicate with each other.  Communication is key to getting goals accomplished.

 

7) What are your thoughts on the increasing rates of diagnosis of Autism, especially in the African American and Latino communities?

 

I think autism has always been here in large numbers.  We just didn’t know what to look for.  I’m not alarmed by increasing numbers of incredible people to learn from.  How would we ever know what it means to be human without knowing all humans?  As for rising rates of diagnosis in the black and brown communities, it means we are finally taking mental health seriously enough to seek professional help!

 

8) I know you are a musician and artist and that your chosen name is illest autist? What is the story behind that name? Where did your passion in the arts come from?

 

I come from a time where autism was considered a sickness (it still is). Well I’m the sickest of us all.  The illest!  I’ve seen a lot of people bullied because of their autism. The streets taught me how to handle bullies.  I had a friend at about five years old.  His name was Tommy.  He was small, rocked all the time and always played a little guitar.  People picked on him for being different.  The name illest autist is my way of saying my arms are longer, my skin is thicker, so come bully me if you think you can.  Also, in hip hop, ill is a good thing.  I love myself.  I celebrate my autism.  As I mentioned before, I come from a long line of greats.  My passion for the arts comes from my people.  The rhythm of our hearts.  My grandmother led a thirty piece band back when she had to go through the back entrance even though she was headlining.  My father engineered for Motown records, at the age of fifteen, at the famed Hitsville USA studio in Detroit.  The history is deep on my father’s side but also on my mother’s. Two of my mother’s cousins you may be familiar with are Billy Henderson from the Spinners (musical group) and dear cousin Artis Lane (sculptor and artist extraordinaire).  It runs deep in me so it’s natural for art to flow from my mind in various forms.  My brother and I released the first full length independent rap album in Canadian history on our own record label.  I consider my professional work as a behavioral consultant to be art, that’s why it was easy to make the transition from music to psychology.  I create skill-builders and lesson plans, even school curriculum, from an artistic standpoint.  It’s who I am.

 

9) If there is one thing you could tell parents of a child with Autism, what would that be?

 

Believe.  Believe in your child, yourself, and your family.  Be patient with each other and have the same expectations for everyone.  We have good days and bad, ups and downs but when we believe we can achieve more we do. Believe you can.

 

To check out more on illest autist, he is on Instagram at https://www.instagram.com/illest.autist/

 

You can also view his artwork at https://www.pinterest.ca/illestautist/

 

You can find his music on YouTube at  https://youtu.be/L_MkUjCP0rQ

 

Please don’t hesitate to comment below. Your thoughts and questions are welcome and safe in this space.

 

Thanks again for viewing my blog. It warms my heart to see so many visitors that come on here from all around the world. I hope to continue hosting more guest bloggers in the future.

 

Love and light,

Kira