Normal

Normal. An adjective. Denoting conformity to the standards, rules, culture, and norms of society.

Will our children ever be able to live "normal" lives?, this question was asked during our first Autism Awareness Campaign. It was a valid question. It was a question that forced us to confront the realities of Autism--our reality. It was a question that made us pause on our tracks, draw a sharp breath and finally give an answer that somehow satisfies the person asking and us who were supposed to answer.

What answer did we finally give? Let me first define what is normal for us: Normal is relative to the meaning we give to it. These define "normal" for us:

*When Garret is able to wake up in the morning with a smile on his face welcoming the sunshine with an equally bright mood that follows the rest of the day, this is normal for us.

*When he is willing to take a bath without argument, finish his bathing time without a violent reaction, brush his teeth, dress himself up without incident, this is normal for us.

* When, on the drive to school, he does not scream or slap when we are about to make that turn on the block he so dislikes, this is normal for us.

* When he is able to carry his backpack and walk on his own without first asking to be carried on the way to his classroom, this is normal for us.

* When he is able to go through his two-hour sped class without whining or complaining, and comes out from his class, smiling, this is normal for us.

* When we go home and he finishes his lunch without so much as a morsel of rice wasted, this is normal for us.

* When he complies when told to get ready for afternoon nap, this is normal for us.

* When in the late afternoon and he is bored, he finds ways to occupy himself and not bothers us with incessant whining, this is normal for us.

*When we go for our afternoon joy rides, he happily sits and watches the world go by before his very eyes and again, does not complain when we make turns he does not like, this is normal for us.

*When we arrive home, and get ready for dinner, he eats readily without spitting the food out because he does not like the taste or texture of how the rice was cooked, this is normal for us.

*When we finally get ready for bed and turn the lights off, and he does not scream because he still wants to play with his spring, and he climbs into bed as requested, this is normal for us.

* When we finally close our eyes, and he hums his song of the night, the stars and spiders, until he falls fast asleep, this is normal for us.

Now remember all that I just enumerated on what is "normal" for us. Now, change "normal" to "miraculous". Read all the things above and change normal to miraculous....What defines Normal for the rest of the community, what is normal for the rest of the world is miraculous for us, for our children and our families. So aren't we all the more blessed because our days are filled with miracles, albeit small, step-by-step, milestones achieved? I do not want to be pretentious and hypocritical and say parents and families living with Autism are more fortunate. Our day-to-day reality certainly tells quite the opposite. It seems as if we are always on our toes, we are always on alert-- on hyper-drive that often times we forget to take care of ourselves as our lives are bent on fulfilling the needs of these little people that we have borne into this world. Nevertheless, we are GREATLY and CONSTANTLY blessed-- with Grace, Hope, Faith, Perseverance and an ever-enduring love, if only to name a few of the countless blessings.

The answer I finally gave during that campaign was," I do not know what the future holds for our son. I ask the question myself, when the time comes when Andro and I will pass, what will become of Garret? Will he be able to lead a normal life? I do not know. We are living it just one day at a time because the uncertainty of the future overwhelms us." It was the most honest answer I can give. I'm sure it didn't answer anything but it was honest no less. My life partner finally took the microphone and said, " When your last name and the last name of the child you are rearing are the same and it is both associated with the word, Autism, your life will never be normal." Everybody in the room was silenced. He further said, "For Garret not to be a burden to society in the future, is our goal. For him to contribute positively and not adversely to society is our quest. And this, will define 'NORMAL' for us."

Right now, I am getting Garret and Morgan's bag ready for school. I make sure that in their backpacks are:

1. A change of clothes

2. Water bottle

3. Their favorite sugarless or sugar-free biscuits

4. A pack of wipes

5. Alcohol or hand sanitizer

There are no books or pencil cases, notebooks and writing pads like other normal kids. (Of course, these are provided in the Sped Center). These are what my two boys need. Their "INDEPENDENCE" pack, I call it. Garret doesn't need books to teach him geometry or plants or the correct grammar. He has the whole world right before his very eyes to teach him that. All he knows and cares is that the slippers and shoes in our shoe rack are positioned with symmetry, and that nature is a kaleidoscope of beautiful, wonderful colors that is given to him to revel in every single day.

In the end, come to think of it, what use will be medals and certificates and degrees if a person cannot be independent, self-reliant and responsible for his own actions and most importantly,have a greater appreciation of life as it is?

Another audience member remarked that these children with Autism are so lucky because they don't have problems to solve, like the rest of the world has, anyway. I beg to disagree. They do have one big problem to solve, and that is-- to live in a world filled with NORMAL human beings who have difficulty understanding them. To communicate their needs, their wants to the rest of the NORMAL human beings. And the rest of us NORMAL human beings who are gifted with a much higher cognitive functioning to cope with the complexities of life, are given the ultimate task to SIMPLIFY and make the world of these children bearable, livable and to make our world a place that will make them thrive not just survive. It is my responsibility and I take it with all my heart to make this community, this world a safe and beautiful place to live in for GARRET. and for MORGAN.

This is our advocacy. This is our fight. This is our battle cry. Whatever the outcome is, whether people still choose to discriminate, judge or simply be indifferent to Autism, they NEED to know. They need to be aware.

We may be living in a not-so-normal life. Our children may not be "normal' in the eyes of the world. But who wants to be normal when it is synonymous with the words-- commonplace, average, run-of-the-mill, routine, unexceptional? What is the purpose of life when we do not strive to be better than who we already are? What use are we if we choose to be unexceptional and common and NORMAL? We all have innate abnormalities, exceptionalities, if there is ever such a word. Uniqueness, simply stated. It just so happens that our children with Autism-- our Garret, my Little Prince has more "unique" traits that are definitely more peculiar and distinct. Now, with all the joy in my heart, I know now that our Children with Autism are brought into this world to remind us how loved we are by the Universe to have been created in the image and likeness of God and not in the image and likeness of any normal being. To remind us how we are truly, truly blessed not because we are normal but because we are given DIFFERENT and UNIQUE traits, personalities, talents, abilities, coping strategies. And maybe, just maybe, we have preoccupied ourselves with being NORMAL disregarding and being unappreciative, not nurturing our own special gifts.

Will our children be able to live a "normal" life? I throw back the question to all of you. Think hard. Reflect as we parents of children with Autism do everyday. What is your answer? What is normal? All I know is, we may not have a normal life. But in the end, when all is said and done, we wouldn't exchange our ab-normal lives for a normal one.