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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 Display of Unsung Affection

AjokeDo you believe that some people are actually positioned into our lives for a certain season, to accomplish a given purpose?

They show up, help nurse our hurting wound, seal the broken patches and then challenge us to pay it forward during our lifetime.

And then One Day, they vanish into thin air!

Just like that!

Gone.

While sorting through some old storage boxes in my garage, I came across an old photograph taken in 1995! It wasn’t the usual fancy studio-ready, happy-selfie type, but one filled with Kodak memories that brought tears of joy, fondness and pure love, for a group of selfless strangers I had once known, dearly.

It had the back drop of a tiled-well-washed hospital ward, with a giant inscription of GHI (General Hospital Ikeja), merry face of a smiling light skinned, British-accented female doctor with a dangling stethoscope around her neck, sprawled across a patients’ bed; it also had me, in a hospital gown smiling but with a confused look, not sure what to expect in this my new and strange abode!

There was Mercy my pretty Sapele-born teenage roommate/patient awaiting her ruptured appendix removal and Adejoke, my other roommate, who was also awaiting her 2nd knee surgery from an infected wound caused by a car accident on her school campus.

If pictures could capture the other hidden features around us, I bet you could smell the poignant and acidic aroma of antibiotics, Izal-washed floors and stale fruits…

One thing we all had in common: Fear of the known and the unknown! We all needed comfort from within to help ease our trembling minds or to erase the horrid stories of the mishaps of the theater room drama; and then, there was always the agitated head nurse grumbling about the traffic of my bedside visitors that’s exceeded the mandatory number allowed,  bringing gifts of homemade food, bedding fixtures and Lucozade drink!

This is no hotel or hostel! It is late, you need to go home” the head nurse would grumble and complain as my mother and then boyfriend-turned husband-now would linger at the reception area, hoping to spend more time with me.

doctorAnd then, there came Dr. Lovette! The female doctor in the picture, Yes! That was what she was fondly called.

She instantly became my adopted Sister! Never knew her from anywhere… but connected with her in such a way that…’count down to the dreary theater for my surgery became a breeze! Un-certainty, fear, worry and doubts were erased by her comforting words and her open conversation about my emotional wellbeing!

Catching up on latest gist became an evening routine and an escape out of the constant depressing memories of seeing other patients being wheeled out with a coded sign of final dismissal.

She erased all anxiety by creating a comforting space we all looked forward to. Her famous words…‘we are all here for a reason, each and everyone of us! resonated within me until I had my partial thyroidectomy and was discharged.

And that was it… ‘The last time I saw her… ‘a void and ache was created inside me, maybe for a good cause. Last I heard, she’d returned to the UK to take care of her own personal ailment…’something no one knew she was dealing with even as She was taking care of us!

Oh! Such selfless and painful dedication of uncelebrated affection! And we all know that ache that always leaves a void within us.

So, there are times when our own heavy heart-burdens cry so loudly that we struggle to hear the voice of others or to remember the unsearchable, inescapable presence of God; times when we think our prayers seem to go unanswered and our broken situations seemingly painful and unfixable.

Tell me, ‘Where is the time to care for others? ‘Don’t we already have enough on our own plate to deal with? Who’s going to do it? Hmmm.

I am sure at some points in your life’s journey you have been blessed with certain people and moments that have left indelible marks on the landscape of your heart and in some way challenged you to dig deep and continue to forge this chain of selfless love and care so that the cycle thrives.

Today, let’s ask ourselves, ‘what vision-goal have we thought about or written down, to do for Others Who Are In Need? What Care Network have we envisioned in our minds and planning to connect with? What Circle Of Kindness has been laid upon our hearts?

Can we make plans to elevate others so we can celebrate their victory, unconditionally? Have we set aside time to visit a nearby shelter, share lunch with that homeless guy we pass by every time, can we walk-into-an-hospice and volunteer or sign up to play the silly puppet-show at the children hospital and amuse kids awaiting or recovering from surgery, as it is? Not when fulfilling a duty of self-recognition or self righteousness?

Chances are you already know a family taking care of a needy child, who need your care? or a family handling a terminal diagnosis? who need your prayer! Perhaps it’s that hurting friend whose profile picture displays a seemingly happy-perfect-made up face but carries a hidden burden never addressed? Or…when was the last time you volunteered to take over the household chores of another family going through life? Just for an hour, while they get a chance to breathe?

When do we begin to put our real radical-impact hat on and stop playing eye-service religious-obligatory task, when do we stop paraphrasing ‘It is well’ and actually mean it by  Making it well’ just-by-doing-our-part?

When do we turn our phone’s selfie mode off and take real life pictures of others to be able to see the pain they are going through? or when do we disconnect from our social media world to spend real quality and uplifting one-on-one time with one another, over a soothing cup of organic roasted dandelion root herbal tea, a tantalizing fruit tart under the soothing and calming aromatherapy candle infused with essential oils? #TeaTartsandTranquility.teacup

While probably we have not been called to save an entire nation from destruction, God has certainly called us to be a care network He can use.

According to Missionary Amy Carmichael, “Often His call is to follow in paths we would not have chosen.”

Whether God is calling you to be a catalyst for saving someone from physical death or being an incentive for saving someone from spiritual and emotional separation, when we move forward in obedience, we are empowered, strengthened, bolstered and confident as we see Him accomplish great and mighty works through us.

Visit http://www.developmentalcarenetwork.com and connect with a care network team!

Yours in Hope as I share ‘One Day” by Matisyahu!
Yinka.

 

 

 

 

 

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Love songs in a fairy tale world. Do happy endings still exist?

I love a good story. I love love-songs that tell stories that are filled with drama, mystery, honesty, hope, grit, tension, release, passion, tenderness, love, restoration, and redemption.ft 1

My all-time favorite love songs/stories combine lots of these elements and finish with a happy-ending. My heart beats loudly for happy-endings and breaks without a sound when there’s an emotional turbulence. (Hmm, maybe that’s why I am still addicted to Indian movies).

I am usually edgy and fidgety at the beginning, a nervous wreck when feelings of passion and rage are about to be smashed by just mere words… ‘words that are so deep-seated, sentimentally erotic and nerve racking whimsical!ft 5

Aha! This is the part where I uncontrollably ball out in tears! The storyline gets to me, whether good or bad. I still get to wipe away a tear, sniffle through the self-acquired misery on behalf of my adopted cast. My enchanted moment!

Eventually, I bounce back to life wondering, Wow! Seriously? ‘Could this be real? ‘true love still exist? why does falling in love have to be so dramatic? ‘or expressing love have to be so painful? When we sing those leisurely played love songs, do we really mean it? I mean like…word for word? Unconditionally? Not like ‘you scratch my back, and I scratch yours too world”? Or are we just residing in a borrowed fairy tale world? Where our words do not align with our actions. ‘More like perfect strangers in a labyrinth drill? Emotion-free!

I remember when Disney’s Aladdin was released in 1992, my friends and I were totally amused by the theme song (A whole new world) and will mime to the lyrics courageously, like we knew exactly the power of love, ‘not that we had it dedicated to anyone special in particular, ‘it was just another karaoke event for us, but the lyrics were just so soothing and comfortable for anyone hoping to fall in love one day! ft 2

It was indeed splendid! I mean, ‘why wouldn’t a-young gal dream of flying on a magic carpet ride, seeing a whole new world with that special guy who can literally operate a magical carpet with his feelings! Remember folks! No mechanical experience needed here!! Fantasy or not. This is utopian! The real maudlin feeling that’s simply romantic! Ah! Tell me, ‘what else does a girl want? LOL!

So, there have been days in my life that have been heavy on the tension and light on the release of still believing in fairy tales. Moments when I’ve felt deep pain and longed for deep peace, hating those fairy tale stories. Weeks when hope evaded my heart because I had chosen to turn from God’s way and defiantly chose Yinka’s way (to live in a fairy tale world) Season’s when I felt like I had messed up so bad that a happy-ending for my life was simply impossible. I’d felt like one of the characters in the book I read and those deep romantic love songs.ft 4

Have you ever felt that way? Like there was a great chasm between your life and a happy-ending? Have you ever felt like you were in a situation, relationship or condition that was un-healable, un-helpable, and un-redeemable? I think we all have. If we are still honest with ourselves.

We all have that perfect love song hidden somewhere inside of us, never used our vocals to express it, but always nursing the lyrics, because they apply to us, it dictates exactly what we are going through and how we are feeling about someone or something.ft 3

One word: LOVE. Perfect, unconditional, doesn’t-matter-who-you-are-or-where-you’ve-been-or-what-you’ve-done love. God made a new and living way for our wounded hearts to be restored … so that everyone of us could experience deep peace, love, forgiveness, and hope.ft 6

What’s your happy-ending story? Still living in a fairy tale world? Hoping you will embrace true love in an authentic world as we begin to count down to the few days remaining in 2015. If you are reading this, remember I love you more and I sincerely mean it. Happy Holidays.

Yours in HOPE as I share my favorite love song/story as Aladdin takes Jasmine on a magical carpet ride. “A Whole New World” (musical recording by Regina Belle and Peabo Bryson).

Yinka

 

 

 

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