Tag Archives: ASD

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The Reason I Jump

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A couple of days ago, I came across a book, The Reason I Jump. I’m pretty confident I had seen or heard the title before, yet I had no idea of its subject matter. This book is an autobiography of sorts written by a thirteen old boy with autism.

I found the book as I was searching for something else on Amazon. I don’t believe my finding this book was an “accident.” I believe God provided an answer to a prayer uttered so long ago I had honestly forgotten about it until I began to read.

The young author’s direct question and answer approach to what is going inside his mind is quite enlightening. I certainly don’t think this one person’s opinions and experiences is a one size fits all explanation, yet this book does provide me with a glimpse of what may be going on inside my child’s mind.

As parents, we are often concerned with changing a behavior instead of contemplating the cause for the behavior, especially when it is something relatively minor. This book actually explains some of those behaviors associated with ASD and entertainingly so at that!

This book is short and to the point, but it is by far the most insightful hour I’ve spent reading in a while. The author shows more wisdom than most adults through his writings. He expresses those things that are both annoying and helpful to him. He uses his “voice” as a platform for those who cannot express their own feelings so that we caregivers can better relate and not just accommodate. The author does a wonderful job of bridging what appears on the surface to what is actually occurring inside his mind.

Hearing about the autism experience from a viewpoint so close in age to my own child left me profoundly grateful. It also showed me my shortcomings as a parent.

I have done a fair job with Lan as we have plodded along this journey, but I now see I have at times treated our experiences as a “job” having to meet a certain end, goals or output. I have not focused enough on what my child feels, thinks or cares about in certain matters. In my diligence to “correct” behavior I didn’t consider that those quirky habits might actually be comforting. Sometimes caregivers are so focused on giving care and getting necessities “done” that we fail to really see the people we are caring for in their entirety.

Our loved one’s hopes, ideas and feelings can get swallowed up by our practical demands and daily routines. Reading this book has allowed me to see my son in a different light and ask Lan more pointed questions which have delivered broader and more detailed responses.

The Reason I Jump is surely only one person’s view yet I suspect a lot of truths in it that apply to so many others. It wasn’t at all what I expected. It’s simple but powerful stories give the reader empathy and a different viewpoint that is not only insightful but inspiring.

If you haven’t read this book I urge you to do so. If you’re reading this blog, odds are high
The Reason I Jump, will be very helpful to you. If you have already read the book I encourage you to share your thoughts.

Now, I may finally know why MY child jumps.

Be Blessed!

 

The Reason I Jump: The Inner Voice of a Thirteen-Year Old Boy with Autism by Naoki Higashida published by Random House 2013

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Improvisation

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This weekend Lan had to do a school project on two musicians. Part of the project required listening to their music. The particular musicians he chose to study were jazz musicians.

Lan enjoyed the music far longer than was necessary to complete his project. I watched him nod along to the changes in tempo and flow all the more aware of how much we have learned to improvise along our journey.

God, through this experience, has taught me to work with what I have. I’ve learned to be flexible. I admit that for much of my life I could be rather unbending. I would not tolerate a lot of gray areas. Things were either black or white, right or wrong, my way or no way.

Jazz musicians can take one song and play it a dozen different ways, with all of them sounding great. Lan and I have learned to be just as  inventive, spontaneous and a flexible with our own “song of life.”

God has taught me  I don’t have to play my notes exactly as they are written on the page. I can speed up the rhythm when necessary or slow it down when the mood dictates. I can add other instruments or enjoy going solo. I am now content to watch and wait confident that God will provide whatever we need. He has continually done so far better than my own orchestrations.

I have learned it is okay to deviate from the professional song book and flow with God instead of the experts. No longer obsessed with playing “my song” perfectly, I have relaxed a little and allowed room for variation and creativity as well.

My life hasn’t exactly turned out the way I envisioned, but thanks to Lan I now see my vision was rather limited. Out of necessity Lan and I work around a few things, and if necessary go under instead of over. This child’s overwhelming optimism and “why not?” attitude have spilled over to the rest of the family, granting us a vision I don’t think we would have otherwise.

Webster’s defines improvise as “to make or create (something) by using whatever is available. We are learning through God’s insight (and sense of humor) to make the most of our blessings where we are and with what we have.

The hubby and I are constantly working with Lan on his maturity and social skills but I am no longer allowing the negatives to overshadow his positives. Lan is humorous, artistic and very creative. We fuel his passions with the same determination once reserved for trying to force squares into round openings.  Instead, we are now learning to soften the sharp edges of our squares with a file. Or better yet, we now stack our blocks instead of pushing them through holes as dictated by other people!

Jesus was great at improvisation. He used a small boy’s lunch, the only food available, to feed thousands. Christ took the small meal, held it up before the Father in thanks and did the miraculous.

I give thanks for this child I have, look up to our Father and also expect the miraculous.

God never fails. He is ever faithful even when “my song” sounds a bit off key to me.  I am then forced to remember that my part is only one part of God’s complete melody.

Is God prodding you to do something different with a situation you have?

A change to your routine or situation might not hurt. You may just find a suggestion or a brilliant idea that actually works!

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Anticipation

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Fear is defined by Webster’s as “to expect or worry about” especially something bad or unpleasant. In contrast, faith is defined as a strong belief or trust in someone or something. Both definitions rely on the anticipation of a particular outcome.

The plant pictured above appears prickly and spiked, yet it is actually soft to the touch.  I had a prickly looking situation just like that plant.  On the surface things looked hard and intimidating.  I believe God was once again asking me, “when will I completely release my fears and trust God when He has shown Himself so faithful time and time again?”  I can’t control everything and God keeps demonstrating that I don’t have to.

Lan received his progress report from school last week. He anticipated it for days but because of a computer glitch, notices were issued late.  Lan is well aware he can always work good grades to his advantage.

Unlike middle school, high school thus far does not return lots of graded papers to students. At least I haven’t seen them.  I had no inclination outside of Lan’s confidence that this progress report would be a good one. We have been down this road before anticipating one thing only for the result to be something else. So, for days I also waited, not with hope, but an anxious dread for the outcome.

It appears Lan is settling into high school okay but I am well aware that appearances can be deceiving. He appears less anxious about attending a new school and making new friends. However, I realize this can be daunting for any teenager. Daily, I ask Lan about his classes only to be rewarded with “good,” or “fine,” and no other details. He is not a child of many words.

Well, the day of issue finally arrived and Lan hopped into the car.  I’m waiting for him to hand me his report. He’s waiting for me to get the car moving. I reluctantly asked him for his progress report and he pulls a crumbled piece of paper from his book bag. I glance over the grades…and smile.

It was the best progress report he’s ever received at the beginning of a school year that I can remember! I’m raving on and on about what a great job he did and Lan’s waiting for me to move the car so he can get home to the X-BOX! I promised I would reinstate the privilege if he brought home good grades. He was more than ready to hold me to it!

God answered my prayer. I am well aware this was accomplished through awesome school staff that enabled my child to be successful. The good report was a great boost to his confidence and an incentive for him to work that much harder. Especially so, since for once, his report was better than his brother’s!

Don’t get me wrong. I have faith in God’s ability to get us along this path just fine. I have seen His miracles both grand and subtle throughout my life. I do believe I am able to receive the things I pray for. It’s just that God’s timing ahead of my expectations simply amazes me!

I expected a final good outcome that I prayed for but not without some major bumps and hurdles along the road. God has made Lan’s entry into high school far better than I ever imagined. I could not have hoped for such a great outcome so soon.

I think I finally get it. God is willing to do even more than I have faith for. He has shown me that He is “able to do exceedingly abundantly above all that we ask or think,” as stated in Ephesians 3:20 NKJV. God teaches me once again not to depend on expert opinion but to rely on His power instead.

I have learned to anticipate the best. I can be faith filled and not fearful! God has shown me I can let my guard down and breathe. I should hand my cares over completely to Him.

Sometimes I think holding tightly to my “cares” has been an excuse that kept me from being obedient in other things. I suspect I’m not the only one who has done this. God is handling my “cares and burdens” as I have finally given them over while accepting my own limitations. I can now get working on other things. Other things I have prayed for….

I will have increased faith for my future and anticipate even better things for my child.

One lesson learned, so many more to go…

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Late Bloomers!

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I love my garden. The cooler days of fall have left me longing for fresh winter blooms as my summer selections faded.  However, last week I noticed fresh new blooms on one particular hydrangea plant.

My hydrangea have the potential to bloom through spring and into summer but usually give one large show in May and then swiftly fade away. Yet on one plant there are five fresh blooms in September!

I had not done anything in particular to this plant to facilitate such a thing and I wonder if that is why it bloomed. It may sound crazy to some but God talks to me in the strangest of ways and I believe my perfect powder blue blooms are there to ease my doubts and fears about those things so completely out of my control.

Sometimes parents try to manipulate and prod their children to perform based on outside expectations. In my own experiences with autism I am very guilty of this as well. However, God holds the perfect timing for everyone and everything right down to when flowers bloom.

Some flowers bloom early and are killed off by frost. Their timing isn’t just right and they fail to enjoy the full luster of their season. Others bloom later than expected and instead of becoming lost in the multitude of blossoms, they are showcased all by themselves, standing out that much more because they did not conform to an expected schedule.

My singular blooms wouldn’t have caught my attention if mixed in along dozens of others just months ago. Yet, in their solitude I can appreciate each and every one. I can appreciate them so much more because they were not expected.

I am now at peace that my many personal expectations will not be met on my time-table but on God’s instead. I have finally learned His timing is always perfect and it makes the miracle that much more. More amazing! More appreciated! More marvelous!

My new blooms remind me that timing is relative. I don’t have to get myself frantic and panicked when my kids (or other things for that matter) aren’t moving along when expected, especially on someone else’s schedule. Schedules can be arbitrary.  Growth charts, developmental analysis and mainstream medicine don’t have the Ultimate say in my eventual outcome.

Only God’s timing, which is always perfect timing, is all I really need.

Autism has taught me that, though I admit I can sometimes forget. God gave me my late bloomers to remind me that He is in control and that oftentimes the most pleasant surprises come when you aren’t expecting them at all.

I’ve seen my fair share of miracles and am yet hopeful for even more! At times when I’ve feared my kids were losing ground or were at a standstill, their eventual and accelerated growth was even more so celebrated!

We are all too some extent liken to plants in God’s great garden. Some people bloom quickly only to fade away just as fast. Some are slow to mature only to later bring sustained and dependable beauty. And now and again there are those few plants over to the side that don’t appear to have that much going on, but when you least expect it and out of their scheduled “season” will shine and stand out among the rest!

I have relinquished to God my expectations of time. Autism has tempered the “control freak” that once consumed me.  I cast my cares over to God and allow Him take them from there.

I can now pray, prepare and wait with expectation instead of frustration.

My faith has not failed me and God’s grace remains unending. I have a confidence and peace that I cling to as I travel this adventure in autism.

Just like my flowers, I am surprised at my miracles that “bloom” unexpectedly and out of season, yet their sweet reward makes me appreciate God’s grace that much more!

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Autism in the Headlines: part two

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My last post on this subject revolved around the attempted murder and suicide in one Michigan family. Weeks before that story hit the headlines another family attempted to do the same.  However, that child did not survive.

Again, there are elements to that story that I’m sure will come to light later. Regardless, a life was lost. What is most unnerving is the unanswered question; could this tragedy have been prevented?

Parade Magazine ran a story in April about one particular family and how the costs associated with treatment for their child was an enormous hardship on that family. As a parent I also investigated the costs of schools in my area that offer the kind of teaching and support beneficial to children on the spectrum. The costs for specialized schools in addition to therapist visits and other treatments are mind-boggling. They are way out of reach for the average middle class family, even those that do have health care coverage.

Some states do not require insurers to cover the services our kids need. I find that appalling since these same companies have no qualms collecting increasingly expensive premiums. Most health insurance companies in America are extremely profitable.  Insurance companies increase their profits by minimizing services. Most companies claim they can’t afford to cover crucial services for autism patients. I argue they can’t afford not to.

Pay now or pay much more later.

Preventable health care services and screenings have proven to save money when compared to the cost of not providing such preventive care. I suggest Autism is no different.

Study after study indicates that early intervention does wonders if not miracles. Even small increases in communication and cognitive skills can make a world of difference in the quality of life for not just the patient but the parent as well. Access to services and therapies may offer the support some families need wherein the absence of these same resources only ignites a smoldering environment that is quick to burn.

I certainly don’t have all the answers but I do have a few questions.  How is it that insurance companies can choose to exclude coverage for certain diagnosis, especially when it was not a pre-existing condition? Many families have paid thousands of dollars in premiums only to have their insurer close the doors they need opened the most.

One commenter on a blog suggested that parents of autistic children are screened periodically as well as their children. I don’t know if the comment was intended to be sarcastic or not but in the wake of recent events, if it can save some lives, it may not be a bad idea.

Autism can be financially devastating and psychologically grueling for both parent and child. We have children losing their lives and not being allowed the opportunity to live up to their potential. Society is failing them. I would think heightened awareness would push people in a positive direction. Unfortunately increased awareness cannot erase ignorance.

Again from the headlines, one Canadian family had to endure hate mail from a neighbor.  Is this family not dealing with enough? At this point authorities still have not found the perpetrator. The family is forced to live knowing an unseen threat lurks nearby. Thankfully, other neighbors rallied around the family. But can the damage of the offender really be undone?

There are also unscrupulous scoundrels in healthcare who would take advantage of the uptick in ASD diagnoses to sell their treatments to devastated and desperate parents. Many families have paid thousands of dollars to receive only broken promises. These are not disposable dollars. Some parents are losing their homes, sacrificing the needs of other family members and clinging desperately to sanity all while trying to do all they can with what they have.

Autism is crushing families and now people are taking sides. It pains me to see such decisiveness when it requires all of us working together if we are going to overcome the challenges posed by autism.

Our kids are not disposable. We must be their voice. Yet, others will not listen if we are turning on ourselves.

Some would say autism is not their problem. I argue, oh yes it is. The numbers are increasing, alarmingly so. The upcoming change in how autism is defined within the medical community will surely have an effect on just who qualifies for what available benefits.

Treated or not, these kids are not going anywhere and will become integrated members of society. Our society benefits most when our kids get the care they need early so they can become adults living to their highest potential.

These recent stories in the news have had me in tears and I don’t cry easily. I have prayed and cried and prayed some more. I am grateful I have not had to endure the circumstances of others but I don’t delude myself into thinking that I am in no way unaffected.

This financial, emotional and mental toil is not isolated to autism. I have read several articles about children with other developmental issues and even elder abuse due to Alzheimer’s and dementia having a similar impact on families.

Where does the madness stop? How can we make a difference? I don’t have all the answers but I am willing to listen. I am willing to try.

Are you?

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Dont Lose Yourself!

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I remember a conversation with my boys not that long ago where I was trying to convince them that I really used to be a fun and interesting person, recalling a long gone pre-kids era. I didn’t see what was so incredibly hard to believe. Instead, both boys looked at me dumbfounded as if horns had grown out of my head.

It took a minute or two bu then it dawned on me. My kids couldn’t believe it because they had rarely seen it! 

My kids are accustomed to seeing me perform my usual maternal responsibilities of keeping them on track and as organized as possible. Or they easily view me from the perspective of my “day job” as mom’s alter ego away from home. These things are easy for them. Fun? Interesting? Not exactly two adjectives readily identified with mom.

Before I was immersed in motherhood, I had a social life, hung out with friends, went to concerts, read lots of books and did fun things that normal people do. Even after my kids were born, I managed to maintain a garden, collect comic books and still pursue my many varied interests.

But somewhere along the line slowly and insidiously more and more of my interests gave way and faded away as their extra-curricular activities swallowed up time. My interests deferred to theirs.

My household was running along just fine. My kids were okay. I could check my husband off my list as present and accounted for. Work? Check. Everything was in reasonable order…but I wasn’t myself. In fact, I no longer recognized myself.

I could only remember the things that gave me joy as faint memories because I had deprived myself of them for so long. Everyone else in my household was moving along just fine, but I was lost. I lost myself somewhere along the way of trying to be everything to everyone.

I’m not quite sure what prompted my revelation but I guess another birthday may have had something to do with it. When I realized that I have probably lived half of my life already, I had a new found determination to actually enjoy my life!

I concluded I was doing myself a disservice by robbing myself of precious “me” time (locked in the bathroom away from the rest of my family would no longer count) and that I was robbing my kids as well.

If my world always revolved around theirs, I would be lying to them. The real world doesn’t operate that way and there was no valid reason to set them up for such an unrealistic expectation. I also realized that instead of smothering my personal interests I could not only enjoy them but also share them with my kids.

My kids now have a vast knowledge of the Marvel Universe. This may not be the most useful information ever, yet it is oh so entertaining as we can discuss super-heroes until infinity.

My oldest son is now a most excellent baker of cookies and cake from scratch. My youngest is a self-proclaimed pizza connoisseur, his home-made pizza is far better than any take-out.  Both kids have absorbed my love of cooking and nearly fight each other in  their attempts to conquer the kitchen.

My kids absorbed my passion for writing as well. They now write their own comic books and graphic novels creating characters and sketching them out. I am now “interesting enough” to consult about plot ideas, themes and costumes!

When we as parents allow parts ourselves to die, no matter how insignificant it seems at the time, we actually kill opportunities to share with our kids.

This decision to not just cast aside my own personal hobbies for my kid’s casual interests gave them a newfound respect for me as a person and not just their mother.

I can’t provide a balanced example for them to aspire to if I lead an unbalanced life. Lingering or latent resentment because I made a choice to diminish myself for the benefit of my kids actually benefits no one.

They don’t need a martyr. The do need a mentally and emotionally fit mother!

God created me not one-dimensional but with layers. I am daughter, wife, and mother each persona with varied facets. We are all gems that when turned toward the sun (or more accurately, the Son) reflect various degrees of light depending on how much we’ve been cut, honed or polished.

Sometimes we need a few cuts to better absorb the light. Sometimes we need to polish ourselves so that our best selves shine. Pursuing those interests that speak to us allow us opportunities to reflect God’s light on others and share His love with those we love.

It is in fact our responsibility to “use it or lose it,” in regards to those talents He has given us (Matthew 25:15-29). For what God has given us is not to be buried but multiplied instead! We multiply our talents when we share with others what we know and have. To bury our gifts is displeasing to God.

Learning that I don’t have to obliterate my own talents under the obligations of motherhood but that I can nourish them and share them with my children, provides them opportunities to learn new things, engage in new adventures and stimulate their curiosity in ways no video game or DVD ever could.

God loves me; of this I had no doubt. I had to re-learn to love me enough to nurture my talents and interests as God intended.

My kids and I now have more things to enjoy together. I have relinquished my role as just their “taxi driver” and relish my role as contributor and participant.

If you have lost a bit of yourself, I challenge you to find yourself and those things once held dear to you. Unearth those gifts, share them and allow them to make room for you!

It still takes a bit of diligence to maintain a good balance between me, them and us but it is well worth the effort.

“Amazing grace, how sweet the sound, that saved a wretch like me, I once was lost, but now am found, was blind but now I see,” 

John Newton