Friday, March 22, 2013

10 THINGS EVERY CHILD WITH AUTISM WISHES YOU KNEW



If you remember, I used the notable author Ellen Notbohm's article Ten Things Every Child with Autism Wishes You Knew in my post yesterday, but I admit that I was wrong in doing so, because I wasn't able to ask for her permission first. My bad.

I was very concerned that she would be offended by what I've done, but to my surprise, this woman has a heart of gold. I am very much grateful that she accepted my apologies and gave me the permission to post the updated version of that text!

Well, to be honest, I don't know whether it's my lucky day today or what. I just couldn't believe that I was able to communicate with a very distinguished and prolific Supermom. Wow, I really am honored.


Ellen has written several compelling books about Autism. Infact, the amazing text that I've used yesterday (and posting right now) is now a portion of her book that goes by the same title. If reading the text here enlightens you, how much more if you get the book itself? I recommend her books because they are sincere and based on her own experience as a Supermom.

Let's admit it, we need a friend to guide us through and help us in understanding our children with autism. Ellen is reaching out to help, because she knew exactly how it feels to be in our shoes... and that's why she has published her books.




Ten Things
Every Child with Autism Wishes You Knew
by Ellen Notbohm

from the book Ten Things Every Child with Autism Wishes You Knew, 2nd edition (2012, Future Horizons, Inc.)

Reprinted in its entirety with permission of author






Some days it seems the only predictable thing about it is the unpredictability. The only consistent attribute—the inconsistency. Autism can be baffling, even to those who spend their lives around it. The child who lives with autism may look “normal” but his behavior can be perplexing and downright difficult.

Autism was once labeled an “incurable disorder,” but that notion has crumbled in the face knowledge and understanding that increase even as you read this. Every day, individuals with autism show us that they can overcome, compensate for and otherwise manage many of autism’s most challenging characteristics. Equipping those around our children with simple understanding of autism’s basic elements has a tremendous impact on their ability to journey towards productive, independent adulthood.

Autism is a complex disorder but for purposes of this article, we can distill its myriad characteristics into four fundamental areas: sensory processing challenges, speech/language delays and impairments, the elusive social interaction skills and whole child/self-esteem issues. And though these four elements may be common to many children, keep front-of-mind the fact that autism is a spectrum disorder: no two (or ten or twenty) children with autism will be completely alike. Every child will be at a different point on the spectrum. And, just as importantly, every parent, teacher and caregiver will be at a different point on the spectrum. Child or adult, each will have a unique set of needs.

Here are ten things every child with autism wishes you knew:




1. I am a child.

My autism is part of who I am, not all of who I am. Are you just one thing, or are you a person with thoughts, feelings, preferences, ideas, talents, and dreams? Are you fat (overweight), myopic (wear glasses) or klutzy (uncoordinated)? Those may be things that I see first when I meet you, but you’re more than just that, aren’t you?

As an adult, you have control over how you define yourself. If you want to single out one characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. If you think of me as just one thing, you run the danger of setting up an expectation that may be too low. And if I get a sense that you don’t think I “can do it,” my natural response will be, why try?


2. My senses are out of sync.

This means that ordinary sights, sounds, smells, tastes, and touches that you may not even notice can be downright painful for me. My environment often feels hostile. I may appear withdrawn or belligerent or mean to you, but I’m just trying to defend myself. Here’s why a simple trip to the grocery store may be agonizing for me.

My hearing may be hyperacute. Dozens of people jabber at once. The loudspeaker booms today’s special. Music blares from the sound system. Registers beep and cough, a coffee grinder chugs. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input and I’m in overload!

My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle three with ammonia. I feel like throwing up.

And there’s so much hitting my eyes! The fluorescent light is not only too bright, it flickers. The space seems to be moving; the pulsating light bounces off everything and distorts what I am seeing. There are too many items for me to be able to focus (my brain may compensate with tunnel vision), swirling fans on the ceiling, so many bodies in constant motion. All this affects how I feel just standing there, and now I can’t even tell where my body is in space.


3. Distinguish between won’t (I choose not to) and can’t (I am not able to).

It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me from across the room, I hear “*&^%$#@, Jordan. #$%^*&^%$&*.” Instead, come over to me, get my attention, and speak in plain words: “Jordan, put your book in your desk. It’s time to go to lunch.” This tells me what you want me to do and what is going to happen next. Now it’s much easier for me to comply.


4. I’m a concrete thinker. I interpret language literally.

You confuse me by saying, “Hold your horses, cowboy!” when what you mean is, “Stop running.” Don’t tell me something is “a piece of cake” when there’s no dessert in sight and what you mean is, “This will be easy for you to do.” When you say, “It’s pouring cats and dogs,” I see pets coming out of a pitcher. Tell me, “It’s raining hard.”

Idioms, puns, nuances, inferences, metaphors, allusions, and sarcasm are lost on me.


5. Listen to all the ways I’m trying to communicate.

It’s hard for me to tell you what I need when I don’t have a way to describe my feelings. I may be hungry, frustrated, frightened, or confused but right now I can’t find those words. Be alert for body language, withdrawal, agitation or other signs that tell you something is wrong. They’re there.
Or, you may hear me compensate for not having all the words I need by sounding like a little professor or movie star, rattling off words or whole scripts well beyond my developmental age. I’ve memorized these messages from the world around me because I know I am expected to speak when spoken to. They may come from books, television, or the speech of other people. Grown-ups call it echolalia. I may not understand the context or the terminology I’m using. I just know that it gets me off the hook for coming up with a reply.


6. Picture this! I’m visually oriented.

Show me how to do something rather than just telling me. And be prepared to show me many times. Lots of patient practice helps me learn.

Visual supports help me move through my day. They relieve me of the stress of having to remember what comes next, make for smooth transition between activities, and help me manage my time and meet your expectations.

I need to see something to learn it, because spoken words are like steam to me; they evaporate in an instant, before I have a chance to make sense of them. I don’t have instant-processing skills. Instructions and information presented to me visually can stay in front of me for as long as I need, and will be just the same when I come back to them later. Without this, I live the constant frustration of knowing that I’m missing big blocks of information and expectations, and am helpless to do anything about it.


7. Focus and build on what I can do rather than what I can’t do.

Like any person, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need fixing. I avoid trying anything new when I’m sure all I’ll get is criticism, no matter how “constructive” you think you’re being. Look for my strengths and you will find them. There is more than one right way to do most things.


8. Help me with social interactions.

It may look like I don’t want to play with the other kids on the playground, but it may be that I simply do not know how to start a conversation or join their play. Teach me how to play with others. Encourage other children to invite me to play along. I might be delighted to be included.
I do best in structured play activities that have a clear beginning and end. I don’t know how to read facial expressions, body language, or the emotions of others. Coach me. If I laugh when Emily falls off the slide, it’s not that I think it’s funny. It’s that I don’t know what to say. Talk to me about Emily’s feelings and teach me to ask, “Are you okay?”


9. Identify what triggers my meltdowns.

Meltdowns and blow-ups are more horrid for me than they are for you. They occur because one or more of my senses has gone into overload, or because I’ve been pushed past the limit of my social abilities. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people, and activities. A pattern may emerge.

Remember that everything I do is a form of communication. It tells you, when my words cannot, how I’m reacting to what is happening around me. My behavior may have a physical cause. Food allergies and sensitivities sleep problems and gastrointestinal problems can all affect my behavior. Look for signs, because I may not be able to tell you about these things.


10. Love me unconditionally.

Throw away thoughts like, “If you would just—” and “Why can’t you—?” You didn’t fulfill every expectation your parents had for you and you wouldn’t like being constantly reminded of it. I didn’t choose to have autism. Remember that it’s happening to me, not you. Without your support, my chances of growing up to be successful and independent are slim. With your support and guidance, the possibilities are broader than you might think.

Three words we both need to live by: Patience. Patience. Patience.

View my autism as a different ability rather than a disability. Look past what you may see as limitations and see my strengths. I may not be good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, or pass judgment on other people?

I rely on you. All that I might become won’t happen without you as my foundation. Be my advocate, be my guide, love me for who I am, and we’ll see how far I can go.










© 2012 Ellen Notbohm www.ellennotbohm.com
Contact the author for permission to reproduce in any way, including posting on the Internet.

Award-winning author and mother of sons with ADHD and autism, Ellen Notbohm’s books and articles have informed and delighted millions in more than nineteen languages. Her work has won a Silver Medal in the Independent Publishers Book Awards, a ForeWord Book of Year Honorable Mention and two finalist designations, a Mom’s Choice Gold Award, Learning magazine's Teacher's Choice Award, two iParenting Media awards, and an Eric Hoffer Book Award finalist designation. She is a contributor to numerous publications, classrooms, conferences and websites worldwide. 
















(Credits: Ellen Notbohm. Thank you, Madame. ♥)

Thursday, March 21, 2013

SUPERMOMS


Summary of today's adventure:

Sophia had an awesome day, although she was a little distracted during her therapy session this morning. After a nap in the afternoon, we went for a walk inside the subdivision. We went to the playground and stayed there for a wee bit. We met a Dachshund on the way home, Sophia was all smiles when it licked her. She was giggly when a Shih Tzu came to visit tonight, she attempted to play with it like the way she plays with LG. Speaking of LG, the family Mini Pinscher, Sophia's all good with it now. I saw Sophia sharing her biscuits with LG; she even puts the biscuit in its mouth. Looks like my little girl loves dogs. Sophia ate Pancit Bihon without being forced to. As of writing, Sophia is still rolling on the bed and speaking alien. Great.

When I hear Sophia babble or when she stares in my eyes, I ask myself, " what is Sophia telling me?" And then I'd analyze what it is that she could be saying. It's like an automatic thing for my brain to immediately analyze what she could be trying to communicate. I used to struggle before; I used to cry at night whenever I felt bad for not being able to understand her. But being exposed to her condition has been teaching me a whole lot, including putting myself in her shoes in order to understand her.

I also put my trust in the education I get from my fellow Autism Moms. They knew Autism like the back of their hands not because they majored in it but because they live in the same house. They carry on with Autism with strength that would put Superman to shame. They tackle with Autism hand in hand with their beloved Super Child and still got time to remain fabulous. If there's anybody who knows best, (next to the person with autism, that is) it's the person who calmly watches a meltdown and knows exactly what to do while the world stares and panics.

                         Source: cafepress.com via sophia on Pinterest



To be honest, there's a guide on how I put myself in Sophia's shoes. Please check out my next post for a compelling piece written by A Super Mom.













(This post has been modified.)

Wednesday, March 20, 2013

AQUAPHILE



I bought Sophia her first inflatable pool back in March of 2011. It was a spur of the moment decision. I decided to get it for her because it was summer, and awfully hot. I figured Sophia could use her very own pool when she needed a dip.


Unfortunately, after two years, her pool mysteriously acquired big holes and couldn't hold water anymore. 


Sophia and her first pool back in 2011


On some days, Sophia couldn't tolerate the hot weather and looked for ways on how to cool herself down. Since her pool's obviously unusable, Sophia's stuck to the bathroom.


One scorching afternoon, I saw her happily splashing water inside a large water container. Baby's got an improvised pool! Smart kid.


Sophia inside the big drum


Yesterday, I bought Sophia an inflatable pool. (On impulse, may I add.) Who wouldn't when your kid kept coming back to the store and peering at the inflatable pools on display? She knew she wanted it. I knew she needed it.  So I bought it.


Her new inflatable pool looks just like the one she had before, only a little bigger.




Sophia's own resort at the rooftop


People with autism are naturally drawn to water. They love the physical sensation on their skin. They get fascinated with the patterns and ripples made by water. For children with autism, water calms them down and relaxes them.


Sophia has gone through several phases with water. Now, she just can't have enough of it.


This afternoon, I had her take a soak. I just filled the pool up then let her do her thing. I watched from afar while she splashed, played and giggled like crazy. Her laugh filled my head and her smile's all I could see. The look on her face was priceless.







One thing I know is, even if I do something crazy for Sophia, as long as it puts a smile on her face, it's all worth it. Her happiness is priceless. As a mother, that's what's most important to me. Even if it means spending my last money for a mere inflatable pool. ♥










Tuesday, March 19, 2013

SOPHIA'S JAMPACKED DAY



It was a busy day for Sophia.

In the morning, Sophia received a visit from a happy couple. Her Ninong (Godfather) Ian and Tita (Aunt) Thea came to play with her, straight off from a graveyard shift. They spent almost two hours playing with Sophia.  Aww.. It really makes me happy that there are people out there who really care for my daughter enough to spend time and effort in checking in on her. For a parent like me, this act of love for my daughter is very much appreciated. I am forever thankful that they put a smile on Sophia's face and make her feel really special.



Sophia, Ninong Ian, Tita Thea and the scattered crayons


After bidding her visitors farewell, I ushered Sophia into the upstairs bedroom in time for her daily siesta. After almost an hour of roughhousing, unintelligible sounds, and pillow tug of war, Sophia fell asleep. Finally, some peace and quiet in this really hot afternoon.



Roughhousing with Mommy


She's got her favorite "foot pillow"


I woke her up two hours later because we needed to do something important. I had her dressed up with a casual tee, denims and her red sneakers. We went to a school just inside the subdivision where we live, and I talked to them about getting my child enrolled for summer class.

I explained Sophia's situation; I had been very clear about her condition and the purpose of enrolling her into a "normal" school. The principal asked if Sophia ever experienced being taught in a class before, and I said no. I explained that she only gets one on one education through her multi-therapies, and has never experienced being in a class with other kids. As we were talking and looking at my girl, Sophia suddenly covered her ears, and I felt a sinking feeling deep inside. Uh oh.. not good. I was bracing myself for the softly delivered hard words, yet still hoping for a positive answer. I waited in vain for almost two minutes before I heard the principal say that we could give it a try. She was very nice and seemed really understanding, she even reminded me when the enrollment would be. I uttered a sincere thank you then shepherded Sophia out.

I smiled at Sophia as we were leaving the school. I talked to her as we walked hand in hand. 'Look, Hun.. you're gonna be in nursery now. Just yesterday you're just a little baby in Mommy's tummy.'  I knew she could understand.

And just like that my eyes turned really teary that I had to wipe them several times. My baby's soon gonna be a lady. Okay, that's just summer class I know, but it's still school, you know. It's getting there.



Sensory Overload at school


Sophia was disappointed when she sensed that we were going back home. I knew a sign of an impending meltdown when I see one. I carried her past the house then walked towards the mall at the next street corner. Even at the mall, she refused to walk on her own and just wanted to be carried. She refused to ride the merry go round and ignored all rides. She kept covering her ears and seemed to be really bothered by what she's hearing.



Sensory Overload at the Supermarket


Thinking that she'd be okay after some fries and soda, I brought her to Jollibee and got her just that. She seemed happy about the fries and the soda, but eating had been next to impossible because she had to let go of whatever she's holding to cover her ears every now and then. At one point I had her lean her head against my chest  and covered her ears so that her hands will be free, just so she could enjoy her food in peace.




Easing up after gulping some soda

Well, she's okay after that. She still refused to ride the merry go round and ignored the rides, but at least she's already good with me not carrying her. We roamed for a while. She kept going back to Handyman and peering at the inflatables on display as if she'd buy one.

I remembered how she improvised a pool out of a large water container and I just gave in to the urge of buying her a new inflatable pool. I knew how much being in the water makes her happy and relaxed. I just decided to get her one.

Mommy's broke, but atleast baby's happy. Anything for my baby. Anything to see her smile.



Jump rope at the rooftop


When we got home, I brought her up the rooftop. Next thing I knew, she was holding this unfamiliar jump rope and acting as if she knew exactly how it's used. I said, 'where did you find that babe?' She didn't even look up. She made some unintelligible sound. Then I saw her moved her arms as if she's swinging the jump rope and acted like she's gonna jump over it. She didn't really jump over it, but I was amazed, nevertheless. I said, 'where on earth did you learn that, babe?' She didn't answer, but she looked at me straight in the eye and smiled.

Hallelujah. I am in heaven.







Sunday, March 17, 2013

GETTING IT RIGHT


Get your facts right, Know-it-all.



Excuse me? Are you really asking me if my daughter is mentally ill?

Are you insinuating that Autism is a mental disorder?

Autism is not a mental disease and it angers me how some people associate them together. Surprisingly, in this digital era wherein information is just a few taps away, there are still some people who choose to remain ignorant. Even some of those "educated ones" readily pass judgement as they smile and offer their best "educated nod" after you tell them your child has Autism. Just amazing.

People with Autism are not mentally ill; their brains are just wired differently. They just think in pictures and not in language. They just need a structured environment to learn. They just have difficulty in communicating and relating to other people. They just have sensory processing difficulty. Autism affects information processing in the brain but they are not dumb. They understand you, they just can't say they do.

Again, they are not mentally ill and it is not nice to ask if the child is "mentally healthy" when you are talking to a parent of a child with autism. Saying "mental problems" and "psychologists" do not make us feel any good, you know. Autism is not a psychological disorder.

People sometimes pass judgment even before getting their facts right. What a shame.

I sincerely hope that there WILL NOT be a time that their own children, children of their children, children of their children's children, will have autism and be judged the way they are judging my daughter.


                       Source: familyshare.com via sophia on Pinterest



Well, the latest estimate for Autism is 1 out of 50, and prevalence figures keep growing. Just saying.






(This post has been modified to reflect the updated estimate.)

Saturday, March 16, 2013

HEALING THROUGH GOD'S WORD





Today we went to Glorietta with Sophia's grandparents. We were there to celebrate God's love along with hundreds of people who believe in healing through hearing God's word. It's Sophia's second time attending a healing mass.



Yey! Gotta see Father Suarez!

Like the first time, we had to sit in the children's section. The loudspeaker was right in front of us and inspirational music was blaring from it. It's not that I have problems with the music nor am I complaining, but I asked several organizers if it's possible for us to transfer seats. I have seen Sophia covering her ears for about five times every twenty minutes or so and on several instances she shrieked like a wounded animal. The organizers were quite understanding and pleasant, but there were no available seats anymore. Good thing that after a quick roam and some fries at McDonald's, Sophia eased up.


Sensory Overload



During the mass, I let Sophia use the phone so that she can play with apps and just behave. She didn't want her own seat and wouldn't leave my lap. Aww, the baby's acting sweet. Maybe she really wanted to stay on my lap in case she wanted me to cover her ears. (Yes, I have recently discovered that she likes it a lot if I help cover her ears for her while she rests her head on my chest.)

Just then I noticed a little boy trying to get Sophia's attention. Sophia was ignoring him as he passed, ran, skipped infront of her. Madame Sophia just keep mucking around with her iPhone. After a while, I noticed Sophia wasn't really focusing on her games anymore and was looking at the kid out of the corner of her eye. I took the phone from her and set her down, then watched in amazement as she slowly, shyly walked to the kid. Within minutes, they were two noisy, running, shrieking, jumping kids. They weren't talking, but I could swear I've noticed that they were trying to communicate through their eyes.

The people could only look and scowl at Sophia and her friend. I could feel some of them staring at me, but I didn't care. I was so happy, I couldn't keep myself from beaming. Imagine, my little girl was happily playing with a kid she just met! (And I didn't have to force her!) It could seem a typical thing for these people to see their kids playing with other kids, but to me seeing my kid at it wasn't. And I thought to myself, "no offense God, it isn't my intention to be disrespectful. But I need to give it to her this time. Just once." They could be thinking that I was such a lax mother for allowing my kid behave that way through a mass, but I knew God understood. I was just beaming and laughing while saying thanks to Him for this miracle.

It was a breakthrough. A miracle. A sure sign that my daughter's multi-therapies are working. A proof that my daughter is catching up. This is a big improvement. Oh thank you, Papa G. ♥


Playful Sophia

After the mass, people lined up so that they can be healed through Father Suarez's touch. While not all people in the world believe in a "healing mass", there are billions who do. Many people attest that they are healed through attending a healing mass. Even people who watch live on TV and those who watch clips on Youtube attest that they feel better after.

I believe in it. For me it's just about putting your trust in the Lord that He will ease your burden. It's just about having faith in Him.

Below is a very short video of Sophia being touched by Father Suarez. You just have to fix your eyes on the upper right corner of the projection board and you will see us.



video




So that's about our day. From sensory overload to playful and noisy Sophia to Father Suarez pinching her nose. The healing mass might be over but the faith in our hearts will be with us wherever we go.



Are you sleeping, babe?






Friday, March 15, 2013

AUTISM DADS









I was reading some good stuff from great bloggers earlier today, um, well, yesterday. (It's past midnight again, I just noticed.) I just happened to stumble across a dad's blog about raising a son with autism, and then I saw his letter for dads who bailed out (or plan to bail out) because of the condition.


When I discovered his blog, I was really pleasantly surprised to find a man courageous enough to write about his struggles as a parent of a child with autism and to want to educate other people about them. The society needs that.


In a world where stereotyping has been such a trend, we sometimes don't realize that fathers are also getting their share of the heartaches and struggles. Some men are really good in hiding their pain but sometimes they need to fade into the background just because they are near their breaking point. It's really hard to be stereotyped as the stronger gender because they are expected to be unbreakable. But as any parent of a child with autism, fathers are also trying their best to cope and at one point or another, they get lost and break, too.



                         
                        Source: Uploaded by user via sophia on Pinterest





Just glad my daughter's dad is one of the best dads in the world. He may not be unbreakable, but I know he'll  always be my daughter's stronghold. I don't normally say that, but it's true.



  
                             
                       


                       Source: Uploaded by user via sophia on Pinterest

















(This post has been modified.)

Thursday, March 14, 2013

PUBLIC DISPLAY OF AUTISM





It's about half an hour past midnight and I'm working late for an online writing community, when I felt the long period of sitting taking its toll on my back. I decided to rest for a wee bit. As I contemplated about reclining on the bed, I couldn't help but stare at my Sophia's sleeping face. I lay down and embraced her for about five minutes then I started to sit up. My movement must have alerted her subconsciously, her left arm moved and snaked around my waist. Aww... does life get any better than this? God, I love this kid!


While still taking a break, I had been surfing for autism articles when I came across this poem. I immediately loved it, so I thought I might share it. It's something that would educate people on how to react when seeing an autistic child in public.


                Source: clinicallyclueless.blogspot.com via sophia on Pinterest





Public Display of Autism
A Poem by Tina Moreland



If he falls to the floor, kicking and screaming, because there’s no chicken nuggets, it’s just his way of coping. Be patient, you’ll get your turn to order.
If she bumps her head and starts to hit herself in the face, don’t stare, it’s her frustration. Mom will handle it, she sees it everyday.
If dad is cutting his child’s food, he’s not treating him like baby. He just doesn’t want his son to choke.
If she ignores your child on the playground, she’s not a brat. She’s just not good at social interaction. She would love to play with your child, she just doesn’t know how.
He may be too big to sit in the shopping cart, no, he’s not lazy. He wants to run around, but his mom needs to shop. She’s not up for chasing him today.
If she has to be carried out screaming, it’s probably because of a meltdown. Be helpful, open the door. Don’t just stare or whisper. No, it’s not because she didn’t get the toy she wanted. If it were only that simple.
Don’t talk to her like a child, unless she is one. Don’t yell, she’s not deaf. She may not talk, but she can understand.
No, it’s not bad parenting. Discipline won’t help.
This is autism, it’s his life. Don’t judge him, he’s not judging you.



                        Source: cafepress.com via sophia on Pinterest


I'm a mother of a child with autism, I know ignorant people exist. I see them everyday. They come in all shapes and sizes. They come in all levels of rudeness. Hopefully they can memorize this poem. Hopefully they don't stay ignorant, because children like my Sophia need to be treated with respect too. ♥