Half My Life: The Testimony of a Father and His Special Needs Child

By Joseph Lim

Jordan is a loving, intelligent, and energetic boy who, at a very young age, was diagnosed with autism. As a result, he is significantly limited in his communication skills, social development, and academic progress. He exhibits some behavioral issues and maladaptive habits. Additionally, Jordan sometimes has to contend with those who are either not receptive to or not well-informed about special needs individuals. Despite his condition, Jordan's family loves him unceasingly. Together, they persevere through the challenges that accompany the autism and do all they can to obtain the best services and benefits available for Jordan. As time goes by and the family adjusts to their unique struggles, they are hit with another major blow. Just prior to reaching adolescence, Jordan is diagnosed with type 1 diabetes. All of a sudden, Jordan's health issues are more than just social and developmental; they are now also physical. Yet amidst the devastating news and the extremely difficult process overall, the family continues to put their full trust in God. Half My Life: The Testimony of a Father and His Special Needs Child began as just a poem composed by Jordan's father. Years later, it grew into this biographical journal. Much of it was not planned out initially but written on the spot as thoughts and ideas came to the mind of the author and as memories and emotions filled his heart. It chronicles the adventures and experience, the highlights and the struggles, and the surprises and setbacks as told from the perspective of one of Jordan's biggest fans-his dad. The author will donate a portion of the proceeds to charities dedicated to autism, diabetes, and special kids in general. Visit "Half my Life" on Facebook

• Language: English
• Publisher: Christian Faith Publishing, Inc.
• Release date: Jul 14, 2016
• ISBN: 9781681973425

Book preview

Introduction

I wrote this poem back in the summer of 2009. Jordan was only seven years old at the time. The idea behind it is one that I’m sure is shared by many parents of special needs children and in general. That the main purpose of their existence (the parents) is for the well-being of the child; that’s the case for me and my wife when it comes to all our children, but especially our son. It seems that more than half of all that we do, half of our labor, half of our being, half of our heartache, and half of our joy (and more) involves Jordan in some way. To make sure that he’s receiving the proper benefits and services and that he’s being treated fairly wherever he goes—at school, on the playground, during parties and get-togethers, and even in church. We have made it our life’s goal to do all we can to get Jordan to be as independent as possible before we leave this earth.

The poem you just read describes a mere drop in the bucket compared to what I really feel and what I really want to say. That sounds a bit overdramatic, but it’s true. It’s difficult to state these things right the first time they come out of my mouth, and so I try to write them down whenever I remember. In this case, it came out in the form of a poem.

Only God knows absolutely what’s in my heart. Of course, my wife comes close too because we’re going through the same things together. Other parents and caregivers of special needs kids would have a good idea as well. But as for everyone else, you can only imagine. Whatever you’re thinking about regarding what it’s like to care for a child with autism and diabetes (or any other set of special conditions), believe me—you’re not even close. You may have watched movies where some of the characters were autistic or had a type of disability. You may have seen television specials about it. You might have viewed some short video clips on the Internet about the subject, or maybe you know someone personally with a special child. But let me tell you—there’s way, way more to it than that; there’s much, much more that you haven’t seen. Only those who are directly involved are experienced enough to really know what it’s like. People can sympathize, but they cannot really empathize. That is, they cannot fully comprehend it unless they have a special child of their own.

Don’t misunderstand me. I’m not saying that no one else cares. The fact is many people in our lives really do care. They want to help, so they offer their services, and they provide support. At the very least, they are polite, and a number of them are even genuinely friendly to my son. They try to converse with him and include him in various activities, and we appreciate it deeply. No question about that. But at the end of the day, we are the primary caregivers, and as it stands, Jordan will require our total care for the rest of his life, and ours.

This poem is just one example of me pouring out my soul in overly dramatic and somewhat artistic fashion. That is, putting down on paper what’s in my mind and heart. I’ve written several other poems and songs for Jordan and the rest of my family, a few of which might be shared in other sections of this book. You’ll have to read the whole thing to find out. Oddly enough, I don’t set aside time to create these verses, but the words pop into my head at random moments in my everyday routine activities. For example, when I’m stuck in traffic on the freeway or right before I fall asleep as I’m watching TV, or it can be triggered by an event involving my children and so on. In fact, this particular paragraph you just read was not preplanned, but I’m writing it ad hoc as I watch my daughter at soccer practice. The truth is, I never used to be like this—sensitive that is. I didn’t use to write down my thoughts or express my feelings outwardly at all for that matter. I guess having a child like Jordan has really changed me. Being a father in general has made me a lot more emotional than I ever thought I would be.

Anyway, my purpose in writing this book in particular is multifold. It’s mainly for Jordan, of course, essentially a labor of love. Maybe one day, he can read this and even understand it. Then he can see how far he’s come along. It’s also partially selfish though; to be more precise, it’s because I just really need to get this all out. Writing is good for me because I can always go back and edit my words and adjust my thoughts here and there. It beats fumbling around with a lot of hmmms and uhhs while I’m trying to form my statements verbally on the spot.

Another reason for this book is to communicate with other parents and caregivers of special needs children—to share my story with them, trusting that my experiences are somewhat related to theirs, at least in the general sense, even though every child is unique. Maybe there are people out there who just found out that their child is autistic or diabetic or both, and they’re trying to cope. This book is for them too. I’ve read a number of books and heard testimonies from other parents in similar situations. And I recall nodding my head in agreement as they shared their stories and even chuckling at some of the similarities.

Another important objective, moreover, is to hopefully help others better understand what parents of special needs children are going through. I know earlier I said that no one else (except God) totally gets us. And yeah, that’s still true. But with this book, maybe, just maybe, others would be encouraged to make more of an effort. So that when they see a special needs child holding hands with his parents, they are not indifferent about it, but genuinely interested. When they come across an autistic boy or girl making loud noises, they don’t give strange looks or make rude gestures but instead try to converse. And whenever opportunities arise, they take the time to educate their own children about these kids who have it a lot tougher than they do. These seemingly minor acts mean a whole lot to us parents. We notice every little thing because our sensitivities have been heightened due to our situation. To us, there’s a big difference between being sincerely friendly versus just acting polite—and believe me, we can spot that difference in a heartbeat.

I’m not claiming that these little narratives and testimonies are going to be all that interesting to others, aside from me and my wife. Honestly, I don’t expect many people to bother picking up this book and reading through it (but I hope I’m wrong). Why would anyone care about our lives? We’re not famous or anything; we’re not charismatic, and our stories are not going to change the world. There’s nothing magical or revolutionary about them. I don’t write with any special training. I pretty much just speak my mind freely. It’s not always happy and peppy; sometimes I’ll complain and criticize. I may even sound harsh or too frank. If I didn’t do that occasionally, it wouldn’t be real, especially considering our situation. To most, these are just ordinary stories of a boy and the unique experiences of his parents—no big deal. To us, however, they have defined who we are and have characterized our lives. To those who choose to experience a piece of it through this book, I want to thank you for your support. In any case, I hope all readers learn something valuable from each one of these passages.

Behold, children are a heritage from the Lord, the fruit of the womb a reward. Like arrows in the hand of a warrior are the children of one’s youth.

– Psalms 127:3-4

Chapter 1

Family

Mom of the Century

I delivered a Sunday sermon once on Mother’s Day years ago. The theme of the message was to encourage the mothers at the church to follow the duties of and live according to the examples demonstrated by godly mothers as presented in the Scriptures. I talked about how studies indicate that one child will generate an average of eighty thousand hours of extra housework from birth to young adulthood—this is additional housework that would not have been necessary without the child. I also discussed some of the research conducted by different organizations regarding how much mothers should get paid for the work they do as mothers.

I said something to the following effect: You care for your children, so you are professional babysitters with real-life experience. When your children need advice, you are their primary counselors. When they argue or fight, you are the referees and mediators. You cook for your children, so you are chefs. You pick up after them, so you are housekeepers. You help them with homework, so you’re teachers. And when your children get hurt, you become nurses. And so much more. Depending on the source, based on 2006 pay rates, mothers deserve to earn between eighty thousand dollars to two hundred thousand dollars per year for all they do. These words prompted a huge applause from the church audience—probably as a result of their agreement as well as their appreciation for the acknowledgment of what mothers do.

The sources from which I researched did not distinguish between career moms and stay-at-home moms, but let me just say that I have equal respect for both. My wife was a working woman for years. She had a promising career, one that she had always dreamed of having since she was young and that she had been studying and training for for many years. Nevertheless, after giving birth to our first child, she willingly placed her professional aspirations on hold in order to take care of the baby full-time. Now we have three children, and she remains equally devoted to each one—giving them her full-time care and attention. For a strong, driven woman like my wife, this was and still is a huge sacrifice. Yet she made it without reservation and has not regretted it one bit.

In the case of my wife, we need to add more to the list of what moms do. Aside from what I mentioned previously from my Mother’s Day sermon, my wife is also the family accountant, an administrator, a plumber, a carpenter, a painter, a landlady, and a medical researcher (especially since we learned of Jordan’s conditions). Because of her diligence in all these activities, she has given me the peace of mind to work on my full-time job, with minimal worries about what’s going on at home to occupy my mind. Because I know that as I’m dealing with bosses and co-workers and schedules and heavy freeway traffic, she’s got the home front secured.

This is especially helpful when it comes to getting Jordan the benefits entitled to him. My wife did the research. She made the inquiries. She went through the bureaucracy. She dealt with the difficult personalities. And she spoke to the right people herself on behalf of both of us. She’s read books, listened to testimonies, and attended seminars. She’s looked through the different recommended treatments, procedures, diets, and medications to determine which, if any, would improve Jordan’s conditions. Like a tireless workhorse, she’s done it all. She would only ask my support every now and then to fill out paperwork, be present as much as I can at meetings, and occasionally when we needed to flex some muscle. But I fully acknowledge that ninety percent of the legwork was accomplished by my wife. Because of her hard work and persistency, which was mainly motivated by our son himself, Jordan has had several services granted to him. These include speech therapy, occupational therapy, behavioral intervention, adaptive physical education, a one-on-one aide, parent helper assistance, respite care, home health nurse, and more. I honestly don’t know how much more difficult a time Jordan would have learning and how much harder that would be on all of us in general if my wife did not put forth a champion’s effort in getting Jordan the help he needs. She is such blessing to all of us—myself, Jordan, and the entire family.

Today, the dauntless efforts of my wife continue. She immerses herself directly and wholly into the process. That is to say, she doesn’t just exercise a hands-off approach and leave it up to the experts type of attitude. Instead, she gets right in there. She gathers ideas from anyone and anywhere she can and comes up with a bunch of really good ones of her own. She doesn’t just wait for good fortune to come our way, but she’s at the frontlines making things happen. By no means is this a cakewalk, not even close, but more like a long hard hike through steep and rough terrain. We still have to deal with teachers and principals and therapists and counselors and behavioral interventionists (BIs) and other parents and some naïve or uncaring people, etc. We still have to pull near all-nighters to prepare for individualized education program (IEP) meetings or discussions with the regional service providers. We still have to fight hard to maintain the necessary services and to determine the most effective agenda for Jordan. Nonetheless, with my wife by my side and with God ultimately guiding us, I have all the confidence in the world that whatever happens, it will all work out for the best.

To add to these incredible deeds, my wife has accomplished one of the most difficult tasks of all. She has made me a better person and a much better father. I won’t go through all the history and the details here. I will give just this one example. During Jordan’s early years, I was pretty tough on him. After all, he’s a lot more difficult than the typical kid; he requires a ton more responsibility. Because of his special condition, it takes him several times longer to learn a simple concept, and sometimes he doesn’t get it at all. More often than not, we would need to repeat a lesson to him over and over and over again. It can be extremely frustrating. And due to my frustrations, I would be impatient with Jordan. I would get mad at him even though I know his condition.

At the same time, I would be insisting that others try to understand Jordan better. I would demand from his teachers and coordinators that Jordan get all the benefits he needs. And if they don’t comply, I would threaten to escalate the situation to their supervisors and accuse them silently, and sometimes vocally, of not fully understanding Jordan because they don’t have special kids of their own. I would even get mad at other children who are mean to Jordan. I would think to myself, Where are the parents? What are the parents doing about this? Why aren’t the parents educating their kids about Jordan? Don’t they know that Jordan is a special child and thus should be treated a certain way? The parents need to do something about their mean children! See, I would be complaining about all these other people, and yet I would be impatient with my own son. Sounds like a hypocrite, right?

This went on until many years ago when my wife said something to me that totally changed my attitude regarding this situation with Jordan. She said, "You know what, if you can’t even try to understand your own son, then how can you expect others to?" When she said that, her words hit me like an arrow through the heart, and it has resonated with me ever since. Because I realized from that point forward that if anything is going to happen for the good of Jordan and if I am going to expect anyone’s attitude toward him to change for the better, then it has to begin with me. Since this revelation, there has been no turning back. Don’t get the wrong idea; I still have my moments. But the difference between then and now is that I recognize my flaws, and I’m working to fix them. That said, I am Jordan’s biggest fan and greatest supporter (along with my wife). I am not embarrassed one bit if Jordan expresses himself his own way in public, as long as it’s not in a disrespectful or indecent manner. I don’t care if people give mean looks in our direction or make strange faces or whisper among themselves or even if they chuckle. I make no apologies for Jordan’s condition. As long as no one gets hurt, then I honestly don’t care what others think. What matters to me is that my son is safe, healthy, happy, and improving. Today, my relationship with Jordan is stronger than ever, and it’s growing every moment that passes. I feel totally fulfilled as a father, and I have my wife to thank for this.

Earlier in this section, I provided a salary range of how much mothers deserve to earn annually. Those figures were nice and high, but in my opinion, they are also a huge underestimate. Because when it comes right down to it, how can we put a dollar value on the amount of love and caring and nurturing that a mother provides to her children? That’s a rhetorical question of course. The answer is we can’t; it’s utterly impossible. I mean this more so in the case of my wife. I know that many people will elevate their own moms and wives, calling them the best mother in the world in their eyes. That’s fine with me; I get it. Every situation is different. Every family goes through their own struggles, and moms rise to the occasion in various ways. However, I am rock solid in my stance. There is no contest as far as I’m concerned. I’ve seen it for myself. Hands down, my wife is the mom of the century!

Big Sister

Let me just say this to up front. Big sister is