it’s not fair to Austria

I thought I was early but when I reached the auditorium, the room was packed with parents who were beaming with excitement to watch their children perform. It is Austria’s school Christmas program. The previous week, I was told by her teacher aide that she has been doing well practicing the songs. Austria normally gets overwhelmed with noise and people singing around her. She covers her ears oftentimes when she feels it’s too much or it’s over stimulating for her. In our family, she wants to be the only singer so we call her a diva sometimes but she does sing very well. Her therapist believes that she may have a perfect pitch. It amazes us when she listens to a song a couple of times and can sing some parts of it and the chorus to a perfect tune.

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Austria’s class performance during their Christmas program. She couldn’t perform.

I was informed by her school therapist that during the last practice she had with the class, she was being difficult and hesitant to go up the stage maybe because of its height and that she may not be able to sing during the presentation if she would be feeling the same. A part of me didn’t want to hear what the teacher was saying. Although I understand the situation, I was not ready to hear and accept the fact that she’s not able to perform in a big crowd. I still requested for her to perform even if she is placed at the end of the formation or at the back as long as her teacher aide is by her side to prompt her. I explained she can do it because she already performed something similar during her graduation at her pre-school.

Most of the parents had their video and the cameras ready. Of course I had one too. When the kids lined up and started going to their formation, I was eager to see Austria. One kid at a time, they went up the stage but I did not see her in the line. My heart was getting discouraged and I was almost in tears because I knew she may not be able to perform. I saw her special ed teacher waved trying to get my attention and she informed me Austria had a meltdown. They figured out the stage height may have scared her and the number of people in the auditorium. I could hear her screaming outside and she was inconsolable. I thought her crying was caused by a sensory issue but when we tried to bring her back to her classroom, she cried all the more.

It seemed impossible to bring her to the room without screaming. Usually, when she can’t stop herself from crying, she says “I’ve booboos, I need bandages” and I often give her one and immediately she stops crying, grabs her scarf and comforts herself. I told the teacher to place a couple of bandages to her legs even if she doesn’t really have any cut or scratch. As expected, she stopped crying and just soothed herself by sucking her thumb.

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My kindergarten photo during a Christmas program. I was singing ‘Away in a Manger’ with my classmates. ( I’m far right)

I brought her home and as soon and as I sat down, I took a deep breath to help me control the sadness and disappointment. There was a part of me wishing that Austria is a normal girl. I wished she could perform to an audience like her other classmates and I’d certainly be a proud mom. I wish she can also do the things I did when I was 5 years old in kindergarten. I wish she can just express and communicate herself like other children… so on and so forth.

Inclusion of special needs children in a regular school setting has been proven that their social and communication skills improve tremendously. However, for a parent like me who sees her classmates do great things, able to follow directions without prompts and can converse to someone,  I can’t help sometimes but to compare her to other normal children. I must admit there is a little bit of jealousy and envy towards other parents that is lingering in the corners of my heart.

A spent time with a friend of mine who is a family therapist and I shared about what I was feeling. She asked me if Austria’s development and improvement makes me happy and I said of course. In a very gentle way, she helped me understand that it is not fair to Austria for me to find happiness from her or from her development. She told me that I haven’t fully accepted her condition and that I should cultivate a deeper faith that God is in control and that my happiness should come from knowing that I was given a great gift from God. The role of my children is not to make me happy. It was a very deep conversation but very refreshing one. I praise God for friends who understand and can give me a spiritual perspective.

I felt empowered more than ever. I love my daughter tremendously and even if her condition and social skills do not improve or do the things like other normal kids can do, I’m a happy mother.

Please don’t be mean!

We were eating at a restaurant when I didn’t notice Austria grabbed a jelly packet at the table next to us. The woman reprimanded her and she was mean to me. Of course, I felt really bad and I apologized for the incident. I didn’t have the energy to explain that Austria’s behavior is not a result of lack of discipline but because she has Autism that impairs her to socially interact, incapable of controlling herself most of the times and very limited in expressing her needs. So an idea brew in my mind. I would print T-shirts for her that says.           

“Please be patient, I have Autism” or
“I am not naughty, I have Autism” or
“I have Autism, I’m not ignoring you” or
“I have Autism, I can’t control my screaming”or                                                                    “I have Autism, be patient with my mom” or maybe                                                              “I HAVE AUTISM, WHAT’S YOUR PROBLEM!”

   -perhaps this will help people to be kinder and forbearing. :) 185744_10151419099411563_1663391955_n

Autism Disorder

Link

What Is Autism?

Autism is a complex neurobehavioral disorder that includes impairments in social interaction and developmental language and communication skills and rigid, repetitive behaviors. The disorder covers a large spectrum of symptoms, skills, and levels of impairment. It ranges in severity from a handicap that limits an otherwise normal life to a devastating disability that may require institutional care.

Children with autism have trouble communicating. They have trouble understanding what other people think and feel. This makes it very hard for them to express themselves either with words or through gestures, facial expressions, and touch.

A child with autism who is very sensitive may be greatly troubled — sometimes even pained — by sounds, touches, smells, or sights that seem normal to others.

Children who are autistic may have repeated body movements such as rocking or hand flapping. They may have unusual responses to people, attachments to objects, resistance to change in their routines, or aggressive or self-injurious behavior. At times they may seem not to notice people, objects, or activities in their surroundings. Some children with autism may also develop seizures. And in some cases, those seizures may not occur until adolescence.

Many people with autism are cognitively impairted to some degree. In contrast to more typical cognitive impairment, which is characterized by relatively even skill development, people with autism show uneven skill development. They may have problems in certain areas, especially the ability to communicate and relate to others. But they may have unusually developed skills in other areas, such as drawing, creating music, solving math problems, or memorizing facts. For this reason, they may test higher — perhaps even in the average or above-average range — on nonverbal intelligence tests.

Autism typically appears during the first three years of life. Some children show signs from birth. Others seem to develop normally at first, only to slip suddenly intosymptoms when they are 18 to 36 months old. Autism is four times more common in boys than in girls. It knows no racial, ethnic, or social boundaries. Family income, lifestyle, or educational levels do not affect a child’s chance of being autistic.

Autism is said to be increasing; however, it is not entirely clear whether the increase is related to changes in how it is diagnosed or is a true increase in the incidence of the disease.

Some of the different types of autism spectrum disorders include:

  • Autistic disorder. This is what most people think of when they hear the word “autism.” It refers to problems with social interactions, communication, and imaginative play in children younger than 3 years.
  • Asperger’s syndrome. These children don’t have a problem with language — in fact, they tend to score in the average or above-average range on intelligence tests. But they have the same social problems and limited scope of interests as children with autistic disorder.
  • Pervasive developmental disorder or PDD — also known as atypical autism. This is a kind of catch-all category for children who have some autistic behaviors but who don’t fit into other categories.
  • Rett syndrome. Known to occur mainly in girls, children with Rett syndrome start developing normally but begin to lose their communication and social skills. Beginning at the age of 1 to 4 years, repetitive hand movements replace purposeful use of the hands.
  • Childhood disintegrative disorder. These children develop normally for at least two years and then lose some or most of their communication and social skills. This is an extremely rare disorder and its existence as a separate condition is a matter of debate among many mental health professionals.
  • What Causes Autism?

    Because autism runs in families, most researchers think that certain combinations of genes may predispose a child to autism. But there are risk factors that increase the chance of having a child with autism.

    Advanced age of the mother or the father increases the chance of an autistic child.

    When a pregnant woman is exposed to certain drugs or chemicals, her child is more likely to be autistic. These risk factors include the use of alcohol, maternal metabolic conditions such as diabetes and obesity, and the use of antiseizure drugs during pregnancy. In some cases, autism has been linked to untreated phenylketonuria (called PKU, an inborn metabolic disorder caused by the absence of an enzyme) and rubella (German measles).

    Although sometimes cited as a cause of autism, there is no evidence that vaccinations cause autism.

    Exactly why autism happens isn’t clear. Research suggests that it may arise from abnormalities in parts of the brain that interpret sensory input and process language. Researchers have no evidence that a child’s psychological environment — such as how caregivers treat the child — causes autism.

Adapted from: WebMd

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