Growing Up With Hope, A Snippet Of my Chapter

I’m back, I took a leave due to the burdens of nursing school but I do have a passion for writing and I did promise to come back and continue in my posts. Breaks are so important, especially when used for important things and during a busy schedule.

I wanted to inform you all that I am co-authoring a book with my mom titled THE TRI-WISDOM EFFECT, Achieve success and true happiness while caring for others. The inspiration behind this book is primarily my mother and the struggles she went through raising 4 kids on her own, one being autistic. We recognized that there is a need not only to care for others but to care for the caregiver as well. This need is approached from a holistic stand point, taking into consideration a persons mental, physical, social, financial and spiritual health. The purpose of this book is to uplift and encourage the caregiver/single parent to stay active in their own health by first shifting the mind to reflect positivity and changing bad habits into good ones.

We introduce a 3 step easy to apply method which helps the reader to balance their day to day events, even amongst raising children and/or care giving. For the next few weeks I will be placing snippets of my chapter, which is mostly about growing up with my autistic brother, in my blog posts as a sneak peak for my blog viewers. Straight from our fantastic upcoming book, here is part 1 of my chapter:  Growing up with Hope (my autistic brother).

 

Our finalized book cover! ❤

Chapter 4

A millennial’s perspective on growing up with a special needs sibling

 

Fiona’s story

My name is Fiona, the only daughter of Janepher Otieno who is the primary author of this book. I’m writing this chapter to give you a youth’s perspective on growing up with a special needs sibling. My hope is to be relatable and encourage youths that are growing up within the care of a single parent and/or growing up with a special needs sibling. You are not alone, there is a reason for everything you are given. This chapter is dedicated to you.

God doesn’t call the qualified, he qualifies the called (Mark Baterson, 2014).

God is faithful; he will not let you be tempted beyond what you can bear (1Cor. 10:13).

***

My mother is a force to reckon with. I always refer to her as a locomotive because it just about encompasses her strong sense of self direction and drive to succeed, even under difficult circumstances. Although mom appears to be equipped for the hassles and pressures of raising the four of us, I can’t help but think that she probably struggles most as a single mom raising my autistic brother (Pretend I did not give her the many headaches in my teenage years, even up till now…and pretend my two younger brothers haven’t replaced me and ranked higher than me in teenage madness). My mom calls my autistic brother SS, meaning Special Son. I have chosen to refer to him as hope in my chapter.

How it all started.

For all I know, Hope was born normal with no signs of a mental illness. In fact he was bright and above most kids his age in pre-school. He had a promising future, or at least we thought. Prior to moving to Edmonton, Canada, Hope became very ill and maintained a relentlessly high fever that took time to respond to treatment. On arrival to Edmonton, he could not walk out of the plane. As a child I blamed the plane as having had something to do with his illness. Looking back I recognize the inaccuracy of that thought. Anyways, thinking he was just tired or sleepy, my mom carried him out of that plane, instead of me – the younger one. He woke up the next morning no longer able to hold a toothbrush properly. He went from a 100 to 0, like really quickly! After a battery of tests and exams over a long stretch of time, he was diagnosed with Autism. We were all dismayed to learn that the bright boy with an even brighter future was now mentally handicapped!

Mind you that at this time my brother was around six years old which meant I was just two years old when we moved to Edmonton, Canada, where I have lived to date. Looking back, I recognize the highs and lows of growing up as an immigrant girl, raised by a single mom with an older autistic brother.

As a young child:

I hated Hope’s behaviors. I recall the embarrassment I felt having to be with him in public because I felt like he always disturbed the peace and got negative attention and judging looks from people. I couldn’t accept or understand him. Not knowing better, I felt like Hope was a curse, a burden to have to deal with … his behaviors and his many nuisances were all just too much to handle. Hope was stealing my right to have a playmate, not to mention my bonding and cuddle time with mom!

I compared myself with my friends who had cool, big brothers and it broke my heart to see how unlucky I was. They got to play with their brothers while I, on the other hand, tried to hide Hope’s existence. I was embarrassed about how others would view him if they saw him and therefore change the way they viewed me. I couldn’t use his name to help me pave the way into a popular clique in junior high; no one there knew about my brother and I chose to keep it that way.

Nowhere was my misfortune more obvious than in my elementary school years. There, it seemed as though all my friends had reliable, functioning older siblings who were mature, relevant and who helped them out with their homework. I wanted Hope to change and behave like a normal. I wanted him to play with me, study with me, and protect me, heck it was a dream I know now could never come true, but a child can hope, right?

Furthermore, I detested the extra attention granted to Hope. I felt it took time away from me to connect with mom and it made me feel somewhat underappreciated. Of all the luck in the world, I had to be the one getting the oldest child’s responsibilities while Hope received the oldest child’s privileges. Some days I thought long and hard whether or not the suitcase hanging in my mom’s closet was big enough to enclose my brother meaning I could finally say hasta la vista baby and watch him get shipped off to Thailand or Australia or just somewhere else far from here.

 

Thank you for reading up to this point and getting a perspective on the life of a millennial growing up with a mentally challenged sibling. Stay tuned for next week to read part 2 of this chapter where I continue on with my shift of views from childhood to adolescent to adulthood! Leave a comment down below on your thoughts about this post and whether or not you have had similar experience with a special needs you know.

See ya next week!!

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