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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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How aware are you about ‘AUTISM’?

aut7

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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April is “AUTISM AWARENESS MONTH” (why every WOMAN should attend the upcoming AUTISM support workshop) Part Two.

autism mainWhat I noticed as I walked in was a toddler laughing and spinning around with a stuffed animal at the end of her outstretched arms. She had that kind of pure laughter that made me smile just hearing it. I was ushered in by her tensed parents as I pulled out my hands for a firm handshake, something I usually do to help calm my client’s family, especially when they’ve just received a diagnosis of Autism for their child.

Their beautifully decorated living room had every wall covered with pictures of Alana from child-birth; some were craftily captured in black and white prints, with focal point on the child’s contagious laughter. I sat back and observed my little client for a while. I’m not sure she even noticed me.

Halfway through my pile of paperwork (Developmental Behavioral Assessment/M-CHAT/ASQ) with her parents, I heard the girl shout, “Elmo! ‘Love Elmo!” her speech was stifled and seemed mumbled, under water-like.

“Oh hi. ‘I love Elmo too! I whispered in exaggerated excitement, “Do you want to play with me?” I went down on the floor and sat next to her, not looking into her eyes or invading her personal space, just showing her my folder with the picture of Elmo in it! She didn’t answer or object, but gently touched the folder and looked away! That was a go-ahead-show me sign from her! Yes!! (I was totally thrilled).

A relationship was built! trust was established! sensory impact was initiated, boundaries were set! and the tears began to fall from her mother, as I smiled up at my newly acquired friend. That was 2 years ago… Alana, the 80th kid with Autism Spectrum Disorder on my caseload was as equally special and beautiful to me as all the other children put together in my entire life time!

Today, she’s progressing well and is a very healthy five-year-old, last time I checked with her mom, “oh, she sings “let it go” in her own very special way! …well, literally! And also receiving support through Autism Speaks Group. Awesome!

April 2nd is World Autism Awareness Day and Light It Up Blue! It is celebrated each year and adopted by the United Nations in 2007 to shine a bright light on autism as a growing global health crisis. Autism is one of only three health issues to be recognized with its own day by the United Nations to increase world knowledge of autism and impart information about the importance of early diagnosis and early intervention.

So, if you noticed a child has lack of or delay in spoken language, repetitive use of language and/or motor mannerisms (e.g., hand-flapping, twirling objects, consistent rocking), Little or no eye contact, Lack of interest in peer relationships, Lack of spontaneous or make-believe play or Persistent fixation on parts of objects.. Chances are you know an Autistic child or have encountered one somewhere. It’s not easy knowing what to do or how to respond to the quirks (or outbursts) of an autistic child. Public tantrums are par for the course with these children.

How many of us have seen a kid have an outburst while their embarrassed parents try to get control? Well, ratchet that up a couple of notches for autistic kids. Their tantrums can get rough. Don’t …gape and stare at the child and parent, saying “Can you believe that kid?” faces. And especially don’t make comments or tell the parent, “Can’t you control your kid?” Just go about your business. Or if you catch the eye of the child’s caregiver, just flash a smile. Or offer to help! It can work wonders.

Honestly, you haven’t met anyone so unique and exceptional until you encounter a special need child. Their love is pure, genuine and transparent. You see through their little eyes rays of hope and unquestionable bewilderment. What you see is what you get!

So, instead of staring at the “un-believable” sight or scene, why not give emotional support. Be that imaginary horse to be ridden on or be their knight in shining armor who sings of their praises, it helps build their confidence. Reach out this month – to a special need child and family.

***(Dedicated to all my 100 Autistic caseload children and their families from over 11 years! – ‘I am (still) Lighting it BLUE for you this month and (still) believing God for a miracle!) Love you all for real!

***You can learn more about giving support to a special needs child/family at the upcoming:

*** RCCG LSMC 2015 TOTAL WOMEN CONFERENCE RETREAT WORKSHOP:

Help! I Can’t Do It Alone! on Saturday, April 25th 2015. Please visit http://www.rccglivingspring.org for more information.

Yours in HOPE…

Yinka.

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FYI:

“Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors.

With the May 2013 publication of the DSM-5 diagnostic manual, all autism disorders were merged into one umbrella diagnosis of ASD. Previously, they were recognized as distinct subtypes, including autistic disorder, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome”

https://www.autismspeaks.org/what-autism

 

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