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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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When you meet Julia, you SEE AMAZING!

julia 2

When you wake up to a new day, what do you see? Well, apart from blurry eyes and snotty noses due to sleep deprivation, congestion or insomnia, what makes you just, ‘want to keep waking up?

If you are in love, or still thinking of it, I guess you’re probably saying…’duh, my lover of course! If you are missing someone, you’d probably say…’dang! Oh precious beloved, showeth thy face!! Where hath thou!! (in your magical imaginary soberness).

And if you are like the group of people I meet weekly for support coordination therapy…’Aha! Slowly and gently rise from your slumber, squeeze your pillow and whisper into the hollow of your palm (oh please ignore your distinctive breath) and say slowly, ‘Today, I will do better, because I will See Amazing”

All said and done? Yes? C-o-n-g-r-a-t-u-l-a-t-i-o-n-s! You made it into another day! I am also cheering you on….’as I subconsciously cheer myself on too!

So, a couple of days ago, yours truly turned 45! Like…’yeah, the big 45! And I wasn’t sure if it was worth celebrating or not. Thank God for caring people around me who raised the roof and made it rock! #NoviUnconditionalLove

The much-younger me would have jumped on the next train to NYC to be consumed in the awesomeness of the city, sometimes, it’s just that train ride that does it for me, a more one-on-one time alone with me, myself and I! Just meditating  (I bet you can’t keep a city girl out of the city for long, how I missed my early years growing up amidst the hustle and bustle of a typical Lagos city amusement!) or as my parents have always dreaded all those years…’Oh, she’s started another birthday party in our living room without informing us! Phew!

But not this year… ‘This time around, it was all about Julia. The new #See Amazing kid on Sesame Street! Have you seen her? All cute and so peculiar…’representing every child with special needs…more so, Autism!

Why now? I’d ask myself over and over again. Yeah, why now Yinka?

Awareness. Acceptance. Because just as I celebrated my birthday, my childhood bosom friend and neighbor also turned 45! And happened to be the Julia we all never knew or could understand….’45 years ago!

Did we (children) know she had a unique personality? Or did we just assume she’d always been a difficult child with mental illness? Who knew about the features of a child on the spectrum then? I bet none of us did. All I knew was that I eventually got used to her mannerism as her parents were my God-parents who mentored me all through my sacramental classes at Holy Cross Cathedral then.

So, please meet Cecelia, 45, a daughter, a sister, a friend and childhood neighbor of over 40 years with autism, a rare one that survived the stare, stigma and slur but prevailed with the support of her loving and caring family in a society that condemns such ailment and is so quick to label, castigate and if possible ostracize.

Or perhaps, you also know a Cecelia?  a Julia of my generation, that stood out without condemnation even as ignorant as we were then of her uniqueness, still managed to join in the street play, still managed to attend mass every 6am with her parents, still managed to attend St. Mary’s convent, managed to get her feelings out even when she’s oppressed by lack of consistent vocalization techniques.

julia 3

Today, as I watch sesame street and I see how the world is embracing the new character of Julia – the chosen voice from the autism community, my eyes well up with tears and my heart is unable to contain the joy and excitement of knowing that finally…’every child deserves a place of acknowledgment and acceptance, and not one of isolation or disparity!  Thank you Leslie Kimmelman for the digital characterization and Stacey Gordon for the performance. Thank you autism community for starting the discussion.

When you awake to a new day, what will you be thankful for? I am grateful to God for allowing me to see amazing in every child I encounter. Tantrums and all, I still see amazing and acceptance first.

Yours in HOPE as I share Sesame Street’s ‘Meet Julia’

Yinka.

 

 

 

 

 

 

 

 

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