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‘To Love Un-conditionally’ Our Autism Journey

‘To Love Un-conditionally’ Our Autism Journey
Oby

As a proud loving Mother of two young awesome boys on the Autism Spectrum, my dear friend Yinka approached me to share little nuggets I learned on my journey. 

I. Was. Elated.

So, I decided to share my personal story following the diagnosis stages I went through with my sons. Which I know a lot of other parents  are familiar with as well, on this autism journey.

Stages – From a Parent’s Perspective

Shock 

“Your child has Autism Spectrum Disorder.” Says the Doctor. 

This has come as a shock to you even though you saw the signs, and you knew your child or baby was not quite developing like other kids his age. You literally feel like your world has come to a stand-still, even though it has not. 

Anyhow you want to put it, the words “Autism Spectrum Disorder (ASD)” sounds weightier than the actual situation. 

You scramble everywhere and anywhere for a cure. You join numerous blogs that make the situation dire than it is.

  • Denial 

Family and friends tell you your child is “Ok” and “Does not have Autism Spectrum Disorder. He/she is just slow

  • “You know boys are slower” They say… 
  • My cousin was slow, but now He’s great!” They say...
  • You want to believe them. You believe them...

After a couple of weeks, you realize the Developmental Doctor was right!

Your-Child-Misses-Major-Milestones.

  • Acceptance. Get to Work! 

After observing your child for some days/weeks and much research, you accept it.

In this stage:

Breath.

Take a cup of Coffee.

Shut your eyes for a minute.

Then get to work.

  • Research, Research, Research!
  • You will find excellent and great advice everywhere. 
  • You will also find depressive tales and more tales of doom everywhere. 
  • You will also find people who want to take advantage of you (financially), promising a total cure everywhere.

You will need to diligently research to find the right therapist (Board Certified Behavioral Analyst BCBA, Speech Pathologist, Occupational Therapist, and so on).

Get this information from your doctor, and very good blogs.

Please interview them to make sure they’ll be great fits not just for your child, but also for you and your family.

  • Avoid online scammers at all cost who promise solutions and prey on your desperation.
  • Avoid pity-parties at all cost. 
  • Avoid online groups, that make your situation seem so dire and even make you more depressed, at all cost.
  • Mental Health: 

As the caregiver, your mental health is vital.

Take care of it. 

You must be happy in order to impart happiness onto your child. 

This is important! I cannot stress this enough. 

If uncle Johnny makes you feel uncomfortable or unhappy whenever you bring your dear child to visit him, then stay away from Uncle Johnny.

If therapist Jane worsens your situation or does not really care for you or your child, then change therapist.

Have little tolerance for anything that’ll send you off to depression. 

There is hope always! Always!

Escape (even if it’s just for a few minutes) when kids are not with you, or when you have help. Carve out time for yourself.

Look for what makes you happy and take out some time DAILY. For me, I am a hopeless romantic.

I binge on all things romantic from the trilogy book “50 Shades of Grey” to Netflix’s “Love is Blind”. It makes me happy!

  • Support! Support!! Support!!! 

It takes a village! You need the support of family, friends, place of worship, care-givers. 

#YOU-CANNOT-DO-THIS-ALONE!

  • Let your Child Lead You! 

When you see a different behavior, ‘Your-child-is-NOT-WEIRD!

He/she is just different and learns everything about life differently.

Let your child guide you. Follow your child’s lead and discover how he/she learns. When you do this, you’ll see many windows of opportunity to teach your child and bring your child more to your world! It works! 

  • Positive Affirmations:

Because I am a woman of Faith, I believe in speaking words of Biblical Faith daily to my son. Speak words of Affirmation daily to your child. Teach your child to say these words daily.

When my son was much younger, I taught him a simple night prayer and to say the words “I am healed.” Now he says these daily words of affirmation before he starts his day: “I will be taught by the Lord, and great will be my peace and undisturbed composure.” (From Isaiah 54:13).

  • Excel/Flourish:

Once all these are in place, your child will begin to excel!

You will begin to excel.

Your family will begin to excel.

You are happy!

You laugh!

You play!

You rejoice!

Remember to jot down achievements, no matter how small (or big).

I call them “Praise Reports.”

Always remember that God is good, and that NO-ONE is a biological accident.

Your child is a blessing full and LOVE.

Your life and you child’s life have Purpose!

Absolutely! There is meaning to all this! In time you’ll find out. 

I love my BOYS. My life would absolutely be hopeless without them.

They-teach-me-daily.

Our dear Sons are amazing!

They show us the way daily❤️

We Love them dearly! 

I’d like to thank my amazing husband for his awesome endearing Love and full support. He is amazing!❤️

I also like to thank our awesome families for their amazing Love and full support.❤️

Much Love, Oby.

ABOUT HER: Oby holds a Masters in Electrical & Computer Engineering, Bachelors in Electronics Engineering. She worked for many years in the medical device industry with Fortune 500 companies in research & development, as well as leadership roles. She lives in Atlanta, GA and is happily married to Dr. Ekekwe for 16 years. She currently home schools her older son while the younger son attends school.

Yinka & Oby!

“Oby and I have been friends for over 30 years! #FGGC Sagamu Alumnus! A couple of years ago, we started talking more about her son’s autism diagnosis, Oby was very transparent and willing to share her struggles and triumphs, especially after knowing that was my field of specialization and passion. Overtime, she became an active member of my non-profit organization DCN “My Child Thrives” support group. Oby has been a vibrant, assertive and valuable resource to other members on the forum. She is certainly a force to reckon-with! Her witty takes on situations! her abundance of terms of endearment! as she showers group members with hope! ‘Autism diagnosis report certainly has nothing on this sassy lady!

Yours in HOPE!

Yinka!

as I share ‘Not Lucky, I’m Loved’ by Jonathan McReynolds to celebrate – April, ‘National Autism Awareness Month!

 

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A light for her pathway – Autism Journey

 

Val 1

As the month of April comes to a close, many have spent the month bringing
awareness to the many faces of Autism. As any parent or family member who has
a child on the Autism Spectrum knows, this life is exactly that:

‘A Lifelong Experience’

I am blessed with two sons, both on the Autism Spectrum.

Now that they are grown, Ages 21 and 22, I can reflect on the many moments, early on before diagnosis, when I was full of doubt and confusion, thinking I was a terrible mom and simply did not know how to raise children.

What I didn’t realize was that I was being prepared for a life of adventure, smiles and small victories that would be major accomplishments in my eyes. No matter what, we are still parents. Parents of children that have so much potential and as their parents, we must remember that we are their best advocate.

We are also the ones to teach our children the life skills they need to survive in this unforgiving world.

As my sons have grown older, I have realized how much more they need assistance in everyday social situations. When children are younger, supports tend to be everywhere, but as they grow older, those supports seem to be less and less, especially if the child functions high enough to go to college or have a job.

Teach your child to be a good citizen that can function in society to the best of his/her ability. If your child is very young right now, this may seem a lifetime away however, before you know it, you will be looking at each other saying “Now What?

Keep in mind, while this may seem overwhelming at times, remember there are others who have been in your shoes and you CAN do this, and so can our kids!

Never be afraid to reach out to those in similar situations for support.

Together, with prayers, patience, community support and love, we can nurture young minds and raise resilient adults when we focus on their potentials now.

Written by: Valerie Lawson.

 

*For the past 3 years, Valerie and I usually meet one Friday in a month after clinicals at different Panera Bread locations to brain storm on assessment & treatment planning for children with disabilities, pray about challenging caseloads, talk- deep about life, laugh out loud & silly like teenagers over bowls of clam chowder as we continue to implement developmental disabilities initiatives. I met Valerie in class during  my practicum/residency program Fall of 2016).

Valerie is a Behavior Consultant with DCN Autism Clinic in Michigan, a caring and devoted mother to two young men with Autism, ages 21 and 22 years old.

Yours in HOPE!

Yinka.

 

 

 

 

 

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An awareness worth accepting: Embracing AUTISM!

An awareness worth accepting: Embracing AUTISM!

autism 1

Have you recently felt a kind of jubilation within your heart upon completing a project, a job or an assignment? Self-appraisal aside, how would you score yourself? Thumbs up or down?

Did you feel accomplished? Frustrated? Burned out? Confused about your career path? Are you still wishing you could have chosen a more fulfilling goal to work towards? Do you crave for acceptance or recognition from others to celebrate your victory? How would you describe your goal-driven-desire even without achieving any of the things listed above?

A couple of Sundays ago, right after church, my girlfriends and I (Kene & Tinunke) allowed our kids to play together in the lobby as we got carried away deep in a concerned conversation about career choices and how our African parents played a huge role in strict decision making for their children!

Hmm! Tell me about it! ‘We echoed amidst deep laughter, hip slapping and a cheerful pat on the shoulder as we exchanged stories of a confusing and oppositional remembrance of our struggle to decline our parent’s choices of profession for us then! Ah, you must become a Medical Doctor! Or ‘an Engineer! Or a Lawyer! …’Lol. Thank goodness we eventually followed our heart’s desire, then or later!

After decades of enduring and attempting to be like my mother, the civil service accountant or trending after the steps of my father, the articulate site developer/Land surveyor… ‘It just wasn’t my calling…’it didn’t last long! ‘Years of boring TD classes and assorted French curves with cursive initial of AOG engraved on both sides! Long sessions of Math tutoring when really my mind was focused on watching ‘Wild Rose’ Phew!

Many people are still living stress-filled lives because they never sought and discovered God’s plan and are still trapped in jobs and careers that simply do not fit into. Every day, they feel like the proverbial round peg being jammed into a square hole – isn’t that a painful and frustrating experience? Meaning…people never experience fulfilment in their work because they are in the wrong line of work to begin with just to fulfil other’s needs!

There was a passion hidden deep inside of me, yet unraveled, but always rearing its way out of my consciousness. It has to be something greater than me and I waited…and waited…and waited…’until I set my eyes on Peter, the cutest 5-year-old boy, recently diagnosed with Autism Spectrum disorder…I became his behavior therapist…’that was 14 years ago…He was my first client as He helped pave the way for my passion working with special needs children.   #LifeGoals

So, since we are in April, and its world Autism month, ‘ask yourself…’how aware am I about the term Autism, and how understanding or accepting am I, when I relate with someone with Autism? ‘Am I tolerant and capable of coping or communicating with someone on the spectrum? What difference can I make in the life of someone with Autism? Or how can I be useful to the family of a child with Autism?

It is easier to proclaim we care about someone with a disability or illness or even carry a banner of awareness when our hearts reject all the flaws that come with it!

We sometimes carelessly use hurtful and inappropriate names (crazy, weird, awkward, sickly child or dying woman) to label others just because we feel they are vulnerable or we think we are stronger than their situation? Hello? ‘Got perfect life?

Here’s one of the 10 things a child with autism would like you to know and accept, before judging…

Listen to all the ways I’m trying to communicate.

It’s hard for me to tell you what I need when I don’t have a way to describe my feelings. I may be hungry, frustrated, frightened, or confused but right now I can’t find those words. Be alert for body language, withdrawal, agitation or other signs that tell you something is wrong. They’re there.

Or, you may hear me compensate for not having all the words I need by sounding like a little professor or movie star, rattling off words or whole scripts well beyond my developmental age. I’ve memorized these messages from the world around me because I know I am expected to speak when spoken to. They may come from books, television, or the speech of other people. Grown-ups call it echolalia. I may not understand the context or the terminology I’m using. I just know that it gets me off the hook for coming up with a reply.

By Ellen Notbohm from the book Ten Things Every Child with Autism Wishes You Knew, 2nd edition (2012, Future Horizons, Inc.)

We all want to be successful in our chosen profession. Whether we believe in what we do or not. Our goal is to nail it and keep moving. Your office may be downtown or just inside your front door. Your work clothes may be an elegant suit or ragged jeans and a stained t-shirt. You may be paid in cash or with crayon drawings and sticky kisses like me! It doesn’t really matter because none of these things alone makes us successful in the work place.

Our success comes from the lives we touch with real acceptance…full acceptance of all the shortcomings! #Autism Acceptance

God empowers His plan in us, but when we step into our own agenda or a plan created by anyone else, we are stepping into and relying upon our frail, limited strength. We will soon be empty and stress will flood in, filling the emptiness with anxiety and tension. Don’t waste another day just doing the “next” thing. Take a long, hard look at your work, your job, and your agenda to make sure you are in the right place – doing what you were created to do in this world.

Do more this month, volunteer to be of assistance to a family with a special needs child, and love them genuinely for life!

Yours in HOPE!

Yinka.

Autism Care Network UK

Autism Care Network, Dubai.

 

 

 

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How aware are you about ‘AUTISM’?

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Today April 2nd, is World Autism Awareness Day. Although we know so much more about autism than we did twenty or thirty years ago, it is still very important for all of us to make sure we know some facts and are able to debunk the myths about autism.

As an Applied  Behavioral Analyst with a  deep passion for children with autism, I am joining the rest of the world in wearing blue #LIUB and campaigning for a cause I believe in!

But today is about so much more than tweets and t-shirts. People like my childhood friend, Oyin! My cousin Sammy! and so many others who are on the autism spectrum, live with it every single day — we can’t stop showing our support when the blue lights go out.aut 5

Awareness is the first step to making true progress. With a loud enough megaphone, supported by your voice, we can convince lawmakers to fund more research for innovative treatments and resources for students on the spectrum who need a little extra support to keep up with their peers.

We can keep mapping the human genome to gain greater understanding of the many forms of autism and develop personalized treatments. We can educate more parents about the signs of autism to increase the rate of early diagnosis — and then connect them with the resources they need to help their child lead a happy and healthy life.

Here are 10 good reasons we should care about AUTISM:

Autism spectrum disorder (ASD) is a developmental disability that can cause significant social, communication and behavioral challenges. There is often nothing about how people with ASD look that sets them apart from other people, but people with ASD may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less.aut 3aut 2A diagnosis of ASD now includes several conditions that used to be diagnosed separately: autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), and Asperger syndrome. These conditions are now all called autism spectrum disorder.

  1. About 700,000 people alone in UK are on the autism spectrum and with their families they make up around 2.8 million people whose lives are affected by autism on a daily basis according to the National Autistic Society. While about 36,500 of every 4 million children born each year in the United States will have autism.
  2. The number of people diagnosed with Autism Spectrum Disorder (ASD) has dramatically increased over the last few years. Today it’s estimated that one child in 68 has ASD. This means in a secondary school of 1500 students about 15 of them will be autistic.
  3. Being diagnosed as autistic isn’t a label or something negative – it can mean the difference between growing up in a confusing, scary world and getting all the right support and services. It also gives parents an explanation for difficulties their child is having. Adults can be diagnosed with autism as well.use1
  4. People with autism have a unique take on the world that can be fun, enlightening, entertaining and thought-provoking. They encourage us to see the value of sounds, smells, places and objects that may otherwise pass us by.
  5. Chances are most people will know or be related to someone with autism making it vital that they understand something about what autism is and how they can adapt their world to make it more autism-friendly.
  6. Autism is an invisible disability. That they could have extreme difficulties with sensory processing and social understanding and interaction is not immediately apparent.
  7. Every individual with autism have their own unique version of autism. There are many myths and assumptions, but if you’ve met one person with autism … you’ve met one person with autism.aut 4
  8. That kid in the supermarket having a tantrum might just be a child so overloaded with sights, smells and sounds that the fear and stress has led to a meltdown. Think twice before judging: many parents are fighting battles like these every day and need your understanding and support.
  9. Autistic traits have had a clear benefit to human development, and can affect the emotional well-being of the caretaker – Reach out to a family in need today!
  10. Finally, I would like everyone reading this to show support within their natural environment by volunteering to learn coping strategies – Sunday schools! Camps, or even within your community! And my prayer is that, eventually they will grow up in a world that understands and embraces their difference … shortcomings and all.

***Dedicated to all my 240 adorable Autism community children & families, to the ones we have lost due to late intervention or mis-diagnosis and to all the early intervention/behavioral therapists who have dedicated their lives to serve them. Thank you.

Yours in HOPE as I #LightItUpBlue for Autism Awareness this month!

Yinka.

 

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