“Different but not less”

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My story begin,…………………

How well do you know about Autism ? Is it a disease ? Is it contagious ? What’s the cause and how to cure it ?

It’s in human nature characteristic, when we hear a label like Autism that makes our mind wander all of those typical questions. I am not here to judge those people or any others so don’t get me wrong right away. Indeed, I used to be and had those very same questions and much more actually.

This is all about sharing experiences and personal stories with a simple hope,…………………..to create a sense of Acceptance from others and Awareness toward others as well.

My son been diagnosed ( develop some characteristics ) Autism in the mild spectrum since he was around 18-19 months old.

At first, me and my wife concerned due to delay of speech in his age so we decided to bring him to our regular pediatrician. During that time in the room, our pediatrician noticed something about our son being actively moving and it seems find it hard staying calm or sitting down properly with no eye contact directly. She strongly suggested us to bring him for just an observation to a specialist.

In short, we booked an appointment to a specialist for observation. At first, this specialist known for such a long waiting lists etc but somehow we managed to get it in short period of time, the next week actually we went there to see him.

The exact second, he told us that our son do have some characteristics heading toward the Autism Spectrum in mild category ……………. probably me and my wife kinda shut down for a moment, at least I am for sure because I kinda did a very skimming-brief research about speech delay, hyperactive and Autism couple days before the appointment. Then, those questions above spilled from our mouth asking the specialist,…..what, how, why and steps necessary immediately taken care of etc.

I just have to be bluntly honest here that for a short period of moment after the appointment finished, I looked at my son somehow a bit different from what I usually did previously. Don’t get me wrong, the heart full of love with feelings and emotions toward him never change a bit or diminish from me and my wife. Maybe it was more about me personally feeling “How could this happened ? Did I or we did something wrong during pregnancy ? Did we miss something unchecked ?”

Heck, I even felt at that moment by the end of the day, is this what you called Karma that we needed to struggle, endure and learn from it all in the road ahead ? Does me or my wife carry some sort of genes or chromosomes causing it ? Statistically speaking based on my own research, the Father genes and chromosomes etc keep popped up in the headlines on most articles I read.

We as a parent just like all of you guys out there, always strive for the best toward our children.

When we faced problems in the early stage after the birth such as fever and other illness etc, there is always some sort of assurance of a cure or medicines to overcome with. Even, we experienced a stage where our son had colic. Put it simply, it is a reflux gassy problems due to maybe issue within his intestines or digestive system. Colic itself is unknown cause per se but it is pretty much about gastrointestinal pain. One thing for sure that we endure moments such as our son would crying without any uncertain cause for an hour or so in the evening mostly. Crying seems to be the only way expressing his sort of “frustration” due to uneasy feeling within. Trust me, at that time did bring frustration stage because we tried to think what might be the cause in order to prevent it next time. In fact, when my mother in law stayed one night at our house, she did witnessed in front of her eyes during our son colic in the evening. My mother in law actually did pray Hail Mary in our prayer room while my son non stop crying on the next room. Me and my wife took turn from time to time in holding and hugging him close to our body.

Colic was one of those stage that we had to experience it all. We actually bought a book about Colic and read it while did some research the cause and how to handle or ease the pain for him. Simply, we bought a natural kinda like gripe water, from US by online purchase called ColicCalm ( natural charcoal based ). It did actually help a lot for our son to ease the discomfort gassy pain during every colic period happened.

Back to the Autism,….. so anyway, fortunately me and my wife did make great teamwork put both our minds together for all the essential steps needed to be taken immediately in handling our son condition. Bottom line, we did manual intervention therapies such as S.I ( Sensory Motor Integration ) – O.T ( Occupational Therapy ), and A.B.A ( Applied Behavior Analysis ).

Brief explanation about the therapies we applied to our son,

First was S.I which stands for Sensory Integration that aims to help him with sensory processing issues or disorder by techniques to expose our son by OT ( Occupational Therapist ) with many sensory stimulation in a well structured and repetitive way. The level of S.I activities gradually more challenging and complex. Why does it need to be repetitive way ? Just so our son will respond to those stimulus ( noise, tactile, taste and visual ) in a more “structured / organized” way to feel those sensations and movements.

Next one would be A.B.A, Applied Behavior Analysis. It is basically a form of intervention with learning theories to improve his positive change in social behaviors. This particular one was quite a hard struggle for our son to deal with because the method more traditional one on one in a setting of a room by sitting down properly in such manner.

Pretty obvious that it was gonna be hard as hell for him to cope with. Almost every single time, our son finished S.I and walked up to the 2nd level for A.B.A always involved crying out loud, screaming even heading toward occasional meltdown and tantrum. Please note the difference when you see another child in public places or dealing with your own child, in short, tantrum mostly has a purpose meaning your child has his/her own wants. On the other hand, meltdown usually something that beyond your own child’s control based on his reaction toward something dislike/discomfort. Both of it involves screaming, crying out loud, kicking, shouting, biting and any other aggressive form that they can express it all. The key to handle it both are by staying calm from yourself toward the child while observing the surrounding probability harm or danger to avoid instantly. Again, easier said than done, Yes ! Because I did many times by over reacting and some actual in a harsh way needed or instantly expressed out of me.

Just do your best with keep in mind, stay calm.

To be continue,….

Commuting with my son,…

” The things that makes me different are the things that make me, Me. ”

First year of my son goin to school into K2 Level, we dealt quite hard period of adjustment and maybe there were times that extreme with so many issues in adapting toward his behavior in the car. At some point along the line, I decided myself better to be just with him driving in the car commuting back and forth to school and home.

Just have to admit, I used to rely heavily on gadget such as iPad to keep my son well occupied to avoid his acting up all of a sudden which could cause danger while I am driving the car focusing my eyes on the road and all. Even with gadgets to keep him fully occupied, there were still many incidents almost quite dangerous happened while I am driving.

To other parents who still rely heavily usage of gadget like iPad etc, I am not here to judge you at all because I do realize that sort of thing very helpful in dealing with some cases that goes extreme in any kind of situation, at home, public places, or even during social gathering events with others. Even normal kids do need it for themselves and the parents too, keeping them occupied while we take a short break socializing etc. Nevertheless, please do still keep trying or find activity, time and place with a simple mini goal to reduce amount of time children spend with gadget constantly just as we try to apply it within ourselves, especially during time in front of our children.

” What comes easy won’t last long, and what lasts long won’t come easy. ” we just gotta start doing it at some point. Yes, it is much easier said than done.

In the beginning, I tried my best to adapt while learning his behavioral pattern during time spent in the car especially during traffic jammed rush hours.

For example, besides some occasions when he had little bit ( sometimes toward extreme ) tantrum because of not getting what he wanted such as burgers or fries etc when we passed places like McDonald, there were many times when he gotta pee which in fact, he already potty trained mostly at home or school kinda situation of setting.

Imagine a situation, I am driving in a tollway maybe on the fast lane going roughly at least 60 – 80 km/hrs speed and all of a sudden he yelled ” I gotta pee ” really bad while the expression goes without saying that it is about to burst anytime. From the period when he still need assistance in opening – pulling down his pants with zipper and all until the time when he managed to do it on his own, the opening – pulling down part at least, I just had to learn by trial and error with make gradually adjustment step by step which during time or condition not possible for make a stop, let alone pull over to a shoulder lane.

This is where the multitasking thing take its toll because while he managed to take off his pant, instantly I also have to prepare the empty bottle in my hand when another hand holding steer keeping-it-straight along the road. At that very second exactly, I just have to manage very well and precisely to position the bottle toward his penis with lots of things go through my mind by looking at him that could burst out at any given time which there were actual couple times happened.

Literally others might actually watch what has been going on in our car with vividly display of my son stand on the front seat with his pants all the way down ( butt shown, obviously ), meanwhile me on the driver seat with one hand holding a steer and another hand holding a bottle really up close against his penis with the car still in motion. This sort of thing still happening sometimes until now but much more less frequent because we managed to ask and make him pee before get into the car. Obviously during that kinda thing happening, I slowly reduced my speed and could not care less if any other cars honking etc.

Another thing that used to make me extremely worried was when he get to a stage condition so curious exploring the car while having such a hard time for him to sit down properly with seatbelt restraining him for safety purpose. Things from window, door next to him, the shifting gear in the middle between us or even the handbrake itself. Pretty understandable, especially during unbelievable jammed packed traffic. Even I find myself hard to sit down properly as I suggested him for hours driving in the car.

There is a saying goes like ” You live on high alert constantly “, while others or even my wife suggested me to take a chill-pill. Not saying she is wrong suggesting it, but it is just within me somehow build up that high ( could some occasion, extreme ) alert sense of awareness and many expectation with different kind of scenarios ‘what could happen, what if’ etc and so on. I simply might regret if at some point I try to lower my level of alertness and something bad happen to him. Ridicule me all you want but that is the fact and what I am.

Somewhere along the timeline, me and my wife did realize it that it is not healthy and right to keep him constantly occupied with one way communication such as gadget only instead of observe the environment, road, sightseeing, and talking to me. So we began to cut time spent for him in playing those gadgets up to a point gradually until no gadget at all during weekdays especially school days, not in the car and not at home as well. Basically gadgets allowed strictly during weekends and holidays, which we are also in the progress trying hard to cut its duration on these days.

Back to the time, we finally applied no gadgets at all during weekdays.

It did take couple weeks to a month maybe for him to adjust the no gadget rule during weekdays especially during time commuting back and forth between school and home. In short, he managed it quite well and huge applause with a sense of appreciation from me and my wife toward him able in self control while of course, he managed to divert his wants on gadget toward other activities such as reading books, drawing-sketch-doodling, or bring small simple toys like Lego or PlayDoh.

Even while doing activities such as sketching doodling etc, he does sometimes ask for my assistance to help him draw something in the middle of me driving the car and that makes me have to maybe pull over on shoulder lane couple times to attend him for just a minute or two. Otherwise, he will show his own way being persistent. Overtime, I did start trying to explain him the reason I cannot assist him while I am driving which eventually, he managed to take it very well without constantly being persistent ( sometimes ).

Another trick I kinda doing it with him, is to get him as much involve with my driving. For example, things like speeding up to catch certain car that we tag it by color, looks, brand, or among other things. He does feel the sensation being speeding up in my driving with a little racing muffler sound from the car itself. I also sometimes ask him to help in navigation activities such as while speeding up and trying to take different lane on left or right, he assist me by telling me whether there is another car or not.

All of those things I tried and still doing it with him, of course done with safety measurement put into the considerations which is the most important thing to begin with. Most definitely, he always starts with seatbelt and buckle up every time seat in passenger seat.

Always remember that a single treatment or way or trick apply to one autism child, does not necessarily apply to others. It all depends also on the child, condition, environment, or many other factors.

Bear this one important thing also in mind, whenever we try to teach our children something regardless about life, behavior, or manners, at the same time, they also teach us what life is all about from their perspective. They notice more on what we do rather than what we say verbally. Especially, children with autism are extremely observant than we realize it.

Autism is simply ” one word trying to describe millions of stories “.

Isolated and Overwhelmed

“Even the simplest tasks can be overwhelming at times”

Majority or in generally speaking, Autism family do feel isolated and overwhelmed from time to time.

Let me put it this way, during early childhood stage of our son with his own characteristics considered as ASD, we did find some difficulties in regard attending social event or gathering because we have think many possibilities simply could trigger our son behavior before we decided to go, even then we came with great deal of preparation.

Details to be considered could be from the venue itself, the time of our arrival by anticipating crowds already packed or not, and we even have to sometimes prepare if things went south such as leaving earlier than expected. Crowds for sure could be a huge deal of overwhelming with lots of sensory overload into the mind and visually of our child.

Heck, I even thought so many details from the road condition or routes option whether it is traffic or heavily jammed plus how long gonna be duration of our travel inside the car. At certain age of our son, I even have to think details such as what kinda places we going to pass on the road toward our destination. Most simplest example, any fast food drive thru places that might trigger our son wanting to get those which we did try to avoid as much as possible due to not so healthy obviously. Another thing, whether we will pass any retail stores that considered as most his favorite place to go. Those kinda things for some people might think as if not such a big deal but in fact, it does because it could cause delay or mild tantrum due to him insisted getting what he wants.

Sometimes even until now when he is already 8 yrs old, road pattern of our daily commuting to school in the morning could trigger emotional breakdown outburst suddenly when I deviate from the regular routes while tune in with Waze navigation app on my phone.

Commuting on road just the two of us was indeed such a hard time and period that we both had to deal and adjust toward each other. ( This will be share in more details on the next blog or post ). Eventually, we did overcome it all together by working in progress side by side still gradually, with of course the help of my wife, great and wonderful toward both of us.

As simple as it sounds, one of the main reason in the past was our son or any other Autism children could be very persistent on his/her wants. When I said persistent, it is with great emphasize on its word meaning. Maybe, people will have a saying that the parents have to be strict firm when they say No “It means No” I just have to disagree with this saying now, I used to agree with it though but not dealing with Autism and it has teach me great valuable lesson which is reasoning. We just have to teach our children not simply by prompting a command or order such as NO instead we try to reason with them regardless at that point he might not understand it at all.

If we make a habit by reasoning with them, it will also teach and explain to them that the way thing works not only black and white or yes and no. There is always ways around it to make more sense out of it. You certainly do not want children to be static like typical soldier or worse, robot machinery with command enter etc instead you want children to be dynamic and flexible way of thinking. In reality, life most definitely full of dynamic not always static.

As far as overwhelmed, in the beginning we used to experience such tantrum or meltdown in public places from our son. Obviously, when those kinda things happened, instantly our mind got overload by many factors such as people looking at us, maybe some judgement or giggling shown on their facial expression but some might display concern too though. In short, we should not care too much about it back then and we are doing it continuously now to stop care what others might look, think or say about it all. Caring for whatever others think, will not do anything to ease or help anyway.

Stay calm and focus on dealing what best and work out well for your child, always.

To sum up in a way, all of the above were used to be huge partial amount of things that we considered whenever we want to go to an event or gathering with families and friends in public places and even when we got such things like invitation to a formal event, wedding etc. It is just one of those stage of our life that we have to go thru it together as family with love and patience. In fact, we still have things to be consider until now whenever we go out, much lesser of course and more flexible indeed.

” AUTISM: WHERE THE RANDOMNESS OF LIFE COLLIDES AND CLASHES WITH AN INDIVIDUAL’S NEED FOR THE SAMENESS ” – Eileen Miller, She is a parent advocate for her daughter, Kim from Oregon, USA in goal for raising awareness children with Autism and emphasize working with families with autism children.