Half My Life: Special in Many Ways

Half My Life

Special in Many Ways

Joseph Lim

ISBN 979-8-88540-576-8 (paperback)

ISBN 979-8-88540-578-2 (hardcover)

ISBN 979-8-88540-577-5 (digital)

Copyright © 2022 by Joseph Lim

All rights reserved. No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods without the prior written permission of the publisher. For permission requests, solicit the publisher via the address below.

Christian Faith Publishing

832 Park Avenue

Meadville, PA 16335

www.christianfaithpublishing.com

Printed in the United States of America

Table of Contents

Special in Many Ways, the Poem

Introduction

Our Family Grows

Super Mom

Awesome Big Sister

Amazing Little Sister

Silver Anniversary

Getting the Word Out

Newspapers/Magazines

Radio and Podcasts

Book Signings

Libraries and Bookstores

Social Media

Online Book Reviews

Speaking Engagements

Publisher

Charities

Other Sources and Pleasant Surprises

Video Series

Video 1: The Cause, The Mission, Introducing Jordan

Video 2: Support Groups, Fair Hearings, Genetic Link?

Video 3: Most Important Advice, Hand Signal, Book Signing

Video 4: Self Defense for Special Needs, Chat with Gym Owner

Video 5: VIP Soccer, Interview with Coach, Other Suggested Activities

Video 6: Special Thanks, Food Allergies, Counting Carbs, GFCF Diet

Video 7: Signs of Autism, Diabetes Symptoms, Graduation Speech

Video 8: Q and A on Insulin Management, Challenges/Concerns, New Children's Book

Video 9: What Not to Say to Parents of Special-Needs Kids, Birthday Greetings

Video 10: BuzzFeed Video for Autism Awareness, Things I Wish Others Knew

Video 11: Bad Arguments and Logical Fallacies During Meetings/Discussions

Video 12: Siblings' Perspectives, Chatting with the Brothers and Sisters

Video 13: Words to Live By for Autism, Diabetes, Special-Needs Advocates

Video 14: Lessons Learned and Best Practices for Parents when Advocating

Video 15: Precious Moments, Joyful Experiences, Unforgettable Times

Video 16: Communication, Consistency, Goals Setting, Professionalism

Video 17: Jordan's Best Caregivers, Teachers, Coaches, Medical Providers

Video 18: Five Years with Diabetes, The Triumphs and Challenges

Video 19: A Heart to Serve, Ways to Support the Special-Needs Community

Video 20: The One-Word Challenge, The Acronym Exercise, SMILES for Jordan

Video 21: Quick Tips and Responses to Common Questions and Discussions

Video 22: Thanks to the Real Superheroes Fighting COVID-19, Stay Strong!

Video 23: Happy Birthday, Jordan! Birthday Greetings Video Montage

Video 24: Bye for Now, Future Projects, What's Next in Store?

Autism (ASD)

Fears and Anxieties Updates

Behaviors

Comprehension

Life Skills

Activities and Checklists

Semi-Independence

Completing Sentences

Diabetes (T1D)

Pen to Pump to CGM

Blood Sugar and A1C

Diet and Exercise

Trends and Patterns but No Formula

Five-Year Milestone

Insurance and Supplies

More Tips and Lessons Learned

General Health

Allergies Updates

Wisdom Teeth Extraction

General Practitioner

Other Specialists

Vitals and Meds

Pandemic

School

Middle School

High School

Virtual Learning

Adult Program

Additional Services and Processes

Conservatorship

Jury Duty

Wills and Living Trusts

Home Care Services

Special Accommodations

Due Diligence

Blindsides

Mega Disappointments

Unreachable During School

Cafeteria Speech Sessions

Conflict of Interest

No Greetings from Friends

Fallen Angel

Jordan's Paradoxes

Jordan's Paradoxes with Respect to Services

Jordan's Paradoxes Related to Autism and Diabetes

Jordan's Paradoxes Regarding Miscellaneous Interactions

Top Ten Lists

Top 10 Videos and Music Jordan Loves

Top 10 Games and Apps Played by Jordan

Top 10 Favorite Activities of Jordan

Top 10 Most Positive Memories and Experiences

Top 10 Most Encouraging Comments from Others

Top 10 Most Ignorant and Insensitive Comments from Others

Top 10 Toughest/Scariest Moments

Top 10 Best Surprises

Top 10 Cute, Amusing Comments or Gestures by Jordan

Top 10 Songs Sang or Hummed by Jordan on His Own

Top 10 Songs Jordan Sings Along with Family

Angels and Best Buddies

More Best Buddies

More Angels in Disguise

Little Angels

Angels in the Neighborhood

Furry Friends

Miscellaneous

Bible Verses

Jordan's Birthday Crossword Puzzle

Original Works

Movies and TV Programs

Songs with Relevant Lyrics

Videos and Games Evolution

Halloween Costumes

New Activities and Skills

Final Thoughts

SMILES

Getting Ready to Be Ready

No Life Sentences

Who You Serve

Just Look in His Eyes

Passing the Baton

Generations and Legacies

Team Jordan

About the Author

In remembrance of my father, Jordan's grandpa, who passed away shortly before my first book was published. He didn't even know I was writing a book. It would have been a surprise to him, as it was to everyone else. Rest in peace, Dad.

Special in Many Ways, the Poem

Just when we thought we had about seen it all

As we watched you bravely rise above the falls

Breaking through tremendous barriers and walls

Conquering numerous obstacles, big and small

Just when we thought the worst of it had passed

Thinking these difficult times wouldn't long last

Wanting the powerful storms to go by fast

Fighting courageously as the challenges amassed

Just when we thought this was pretty much done

Hoping that the previous struggles were the final ones

All of a sudden, we were so shocked and stunned

One of the biggest trials of all had just begun

Little did we know there was a whole lot more

A lot bigger than what we were first prepared for

Something we had never even considered before

A huge wake-up call for everyone was in store

This was a major health scare for sure

One for which there is still no real cure

For someone like you, so innocent and pure

It's so unfair what you have to endure

The obstacles extend beyond social development

They are more than just making behavior adjustments

And it's never ever been about your intelligence

But there is included now a huge physical element

Mental, physical, emotional, whatever the case may be

Life is constantly filled with all sorts of adversity

Arrows from every direction approach continuously

Unpleasant surprises pop up quite frequently

How you cope with these new hurdles amazes me

Dealing with the pain and discomfort you live with daily

And though it's so heartbreaking for me to see

I'm truly encouraged by your smile and positivity

You've never complained about the things you go through

That's one of the many incredible things about you

Whatever the hardships may come, old or new

Handling them like a true champion is what you do

You are special in many ways, my precious boy

Constantly full of energy, happiness and joy

Your cheerful nature has never been devoid

You always find a way to appreciate and enjoy

You are special in many ways, my beloved son

Resilient despite the struggles and battles that come

Enduring the darkest of nights, you still see the sun

In the toughest of circumstances, you still find the fun

You are special in many ways, so full of love

Strong and free like a horse, yet sweet like a dove

An extraordinary gift coming from Almighty God above

Among the greatest blessings ever that I can think of

You are special in many ways, my dear child

My source of bliss, high spirits, and beaming pride

No amount of trouble, ordeals, or misfortune can hide

What a beautiful soul you are, both in and outside

Real superheroes don't wear capes, as the saying goes

That's a reality indeed as you consistently show

A real trooper in the midst of life's highs and lows

May your wisdom, strength, and resolve continue to grow

Why all this stuff happens, only God really knows

But I'm so grateful for the blessings He has bestowed

Out of countless couples, it's your mom and me He chose

To raise such an amazing boy whose love overflows

You are wonderfully made, special in many ways

May God bless you and protect you, we always pray

And as long as we are here in this world to stay

We will love and care for you all of our days

For Jordan,

Love, Daddy

March 13, 2020

Introduction

Well, it's been many years since my previous book, sort of. I'll elaborate a little bit later. But I intentionally waited quite a long time before writing this follow up to my first memoir about Jordan. I decided to defer until he finished middle school and high school, turned adult age, and beyond. I figured that by then, we would have accumulated plenty of stories and experiences to have enough for another book. I found out in actuality that I could have written this book years ago. With all the stuff that's been happening, I had more than sufficient material way back then. I suppose I'm not astonished by this. Surprises, pleasant or not, seem to pop up on a regular basis for us, causing delays, requiring additional work, more research and studying, preparing for some significant event or activity, resolving issues, addressing whatever things needs to done. It comes with the territory, so to speak, being the parent of a child with special needs. Make no mistake though, I am grateful for every experience I have with my son. I cherish the good surprises and deal with the difficult ones, but I learn something from all of them. The knowledge and experience I have accumulated at this point compared to years ago is significant. Some may say that it's just the natural experience gained by a parent as their kids grow up. That may be partially true, but there's far more than that. Hopefully it becomes apparent by what's written in this book.

Notice that I kept the same main title as the original, Half My Life. But I changed the subtitle to Special in Many Ways. There are a few reasons why I did so. I think one of them should be pretty obvious. I wrote a poem with that same name and placed it in the prologue. The other motives will be revealed later. For a moment, I thought of using the same poem as the original book and putting that in the prologue again for this one. After all, that poem Half My Life epitomizes the journey my wife and I have undergone with Jordan in our lives. Within the stanzas, verses, lines, and words, I share the struggles and heartaches, as well as the joys and triumphs, we experienced caring for Jordan. I spill my guts, pour out my heart, encompassing a wide range in the emotional spectrum. Yes, that poem means a whole lot to me indeed. However, there is one aspect sort of missing indirectly from it. You see, I composed it years before Jordan's diagnosis of type 1 diabetes. So while the words are still true in general, and while the emotional aspect still most definitely applies, I felt the need to come up with something that is unique for this second book. Hence, Special in Many Ways was composed.

Diabetes is still not specifically mentioned anywhere in the new poem either, so to the typical reader, what difference would it make? Probably none. But personally, I felt the need to write it anyway. I wanted to share how Jordan's strength and resolve have helped him deal with more than just social and behavioral challenges of the autism, but also with very difficult physical health issues from the diabetes. It should be evident by the experiences I tell in each of my books regardless, but the poem is a more compact form where I can express the same thoughts and feelings in a couple of pages. When I say Jordan is special is many ways, it doesn't refer to having multiple special needs conditions. I guess it could be interpreted like that, but that's not the only way to do so. What I had in mind is more indicative of his remarkable character, more relevant to the amazing individual he is.

For this book, I don't have a specific target audience. In contrast, I recall when writing my first memoir, I had an idea of who might find it most impactful and informative, aside from our family and friends. Obviously, I figure the special-needs community would hopefully consider my stories helpful and relatable, including the families, the educators, and the individuals themselves. There's also the Christian community. I thought I could make an impact since my faith is a big part of my life, and I speak of it often in my books. Then there's the Filipino community. Being a Filipino-American, I was hoping to inspire others with similar backgrounds. So those were the three main groups that I anticipated I would most influence, and if I reached more than that, it would be icing on the cake. But what happened instead was a surprise, at least to me. Based on my observations, the influence of my book and other outlets that followed from it, such as online videos, social media pages, magazines, and newspapers, were generally evenly distributed across various groups. So while I may not have achieved large numbers in my originally targeted groups, my reach was more widespread to include many other groups that I never anticipated, several other countries, a wide range of demographics, and well beyond the special-needs community. For this, I am well pleased and very humbled.

So again, I don't have a specific targeted audience here. As far as I'm concerned, this is for anyone who is willing to take the time to check it out. If you've read my previous material, watched my videos, or seen my posts, then you know that my emotions can range quite a bit. I lay it out there; I may compliment, but I may also criticize and complain. Sometimes my words are glowing and positive. Sometimes they're not. I can be pretty raw and direct, maybe even a bit harsh. If I didn't do that when I felt necessary, if everything was always sugarcoated, then it wouldn't be real. But all in all, I believe my assessments are fair. And through it all, whether you totally agree or not, you're still reading this new book of mine, and so I thank you for your support. Believe me, I need as much of it as I can get and am deeply grateful for any that come my way.

Similarly, if this is your first exposure to any of my work, thanks for the support as well. I feel thrilled whenever someone whom I didn't know prior joins in. It's a small club, figuratively speaking, since I'm basically an unknown. So I consider it an honor to have new readers. I sincerely hope you find value in what I share. Whether or not you have direct experience with special-needs kids, as a parent or provider or educator or something else, whether or not you can totally relate to our experiences, I still hope you find these stories and narratives helpful to some extent, or at the very least, somewhat informative, maybe even eye-opening. This is often the case when I read about other people's experiences or listen to their testimonies. After all, my wife and I, ourselves, are still learning, still growing, still figuring things out as new challenges come up. Some of these challenges are described in detail in the pages to follow and all throughout this book. The way we handle these challenges varies on a case-by-case basis, but with one thing in common—that is, with the full purpose of overcoming any trials, struggles, obstacles, for the sake of our beloved son, Jordan. This should be obvious as you read each line, turn each page, and complete each section. So without further ado, let's get started.

If you look at the world, you'll be distressed. If you look within, you'll be depressed. If you look at God you'll be at rest.

—Corrie Ten Boom

Chapter 1

Our Family Grows

Where has the time gone? My family has grown. I don't mean in number; my wife and I still just have three children. But two of them are now adults, including Jordan. I still remember the moment that each of my kids were born. And I have vivid memories of caring for them through every stage of their lives. Thank goodness for cameras too. With pictures and videos, these precious memories are secure. I credit my wife for being so diligent in capturing them. We would be in the middle of some celebration or in a hurry to get to the next ride at a theme park or anxious to start eating at a restaurant or just right smack in the middle doing something fun. Yet she would stop us to take some pictures or record a short video. If necessary, she would solicit the assistance of a stranger to take a family picture of us (before selfies became a thing). It would be quite a disruption and sometimes annoying for us to suddenly stop what we're doing just to take pics. But my wife would often tell me that I would thank her one day. When all is said and done, she's right.

It's remarkable how camera technology has evolved. When it was just me and my wife, we had 35-mm film, which we would send out to the pharmacy for a few days to get developed. Or if we paid a little extra, we could pick it up the next day. There was even one-hour developing, really cool back then, or should I say, rad! For videos, we used a camcorder, which could then be connected to a VHS VCR for viewing on the TV screen—nice. Then a long while after my first daughter was born a few years later, we got a digital camera, finally. It felt like we were the last ones in the world to buy one. So her baby pictures and Jordan's were partially from film and partially from the digital camera. Then by the time my youngest daughter was born, just about everything was taken with the digital camera. Nowadays, all our pictures and videos are on the cell phone. So the evolution of