Surviving Autism

I know there are different levels of autism and that most are impaired when it comes to their communication and socialization skills.  However, I still wish and I wish hard that my daughter could talk or even blurt words out even if she don’t mean to.

She now babbles a lot but they don’t mean a thing to me or to anyone who can hear her.  They could mean something to her and she is trying to say something but because of my limited grasp about how her brain functions I can’t understand her. I wish I could.

Of course I understand her hand gestures and hand leading, her pointing and mannerism.  We’ve been together since the day she was born and I could practically sense when she is hungry, sleepy, bored or whatever.

Maybe her disinterest or slow learning to communicate or talk is partly my fault.  I am not a chatterbox and when I am doing something I don’t want to be disturbed.  I wish I was a talkative fellow so I can chat about anything with her.

I wonder who or what could inspire her to talk?  I’ve taken her to a speech pathologist at the most expensive place you can ever imagine.  I was partly dismayed because she was assessed as still not capable of learning to imitate sounds because she is having a hard time manipulating her mouth.  She could have taught me ways I can manipulate her mouth but she didn’t but expect us to be back in six months with some radical development. I’m a mom not a miracle worker.

I really wish she can talk.  Please help me pray for this one because I believe once she is able to talk her progress will start to surge and she will become one of those high functioning autism who can at least take care of themselves and tell whatever happened to them during the day.

I was reading my favorite blog earlier when I read about a post she wrote about a 19 year old male with autism who was taken out of his home and family and was placed in a psychiatric hospital because of a social worker who things she knows better.

The social worker was new at his or her job, the gender was not mentioned, so there’s a probability that she never really know about autism and that this was his or her first case to assess.

I hope they can get the file or form she filled out to be able to request policemen and other social workers to go with her and take Gomey away from his family.

Gomey has been in the institution for 20 days now since the incident happened end of January.

The family and parents of Gomey are asking for help in any way you can via internet buzz, retweeting and reposting the story in your blogs and social networks and probably find someone to help them with the case and get Gomey back home.

This is a welcome bill that all state and country should follow.  Last Thursday the  The Missouri House on Thursday passed a bill mandating insurance coverage of autism spectrum disorders.

The bill now moves to the Senate, where similar legislation has been tied up in committee for the past week but is expected to advance.

Both bills would require state-regulated health insurers to provide coverage for autism, a neurological disorder that affects communication and social interaction. The mandate would apply to about 40 percent of the private insurance market.

The legislation enjoys broad bipartisan support, but further negotiations are likely on the details.

Read more: Missouri autism insurance measure advances to Senate – KansasCity.com

Personally, I can attest that the symptoms that a child has autism is not present at the early stage of a child. My daughter didn’t show the symptoms until she was two years old. So can you imagine how devastated I was when I learned she has autism.

A U.S. study confirmed this that the symptoms such as lack of shared eye contact, smiling and communicative babbling are not present at six months.

According to the research headed by Sally Ozonoff of the University of California-Davis MIND Institute symptoms emerge gradually and only becomes apparent at the latter part of the first year of life. In my daughter’s case it only became apparent when she was two years old.

They were able to get this conclusion after a five year study of observing each instance of smiling, babbling and eye contact of the children they have on observation until the children reached the age of 3.

The study was published in Journal of the American Academy of Child & Adolescent Psychiatry, found that by age 12 months the two groups’ development had diverged significantly.

Intentional social and communicative behavior among children developing normally increased while infants later diagnosed with autism decreased dramatically, the study said.

“This study provides an answer to when the first behavioral signs of autism become evident,” Ozonoff said in a statement. “Contrary to what we used to think, the behavioral signs of autism appear later in the first year of life for most children with autism.”

My daughter can’t talk yet. She is considered as a non-verbal autistic by professionals. She babble words and can pronounce all the letters of the alphabet but she find it difficult to imitate words when you try ask her to say as you say.

I brought her to a speech pathologist so they can assess how she fares with her communication skills and probably get a recommendation to start her speech therapy. The pathologist said she still finds it difficult to manipulate her vocal cords and tongue to produce the right sounds, although she babble sounds and words and letters she doesn’t have the ability to coordinate her tongue, mouth, lips, vocal cords to produce the sound suited for a word.

According to the pathologist we can start training her vocalization by training her to drink through a straw. As this will help her control her lips, tongue and breathing as she sip the liquid from the straw.

For now our means of communicating is via hand-gestures but not really sign language as she is not deaf. She can understand whatever we tell her but sometimes she gets confused on complicated or multiple commands.

When I first heard that my daughter is different, I was really mad. I hated the family doctor who told my mom that my daughter could be autistic. For a single-parent who is trying her best to juggle work and family obligations to make ends meet this is devastating and an unwelcome remark.

I was mad because personally I feel I fell short of being a parent to my daughter because I am always at work and away from her and this is my fault. Second, how could she be autistic when she was doing so well on her first two years. She can sing, she interacts, and there are no deformations in her physical appearance at all.

I heard about autism before but I never really understood it until I accepted that its not something about what I did and did not do when I was pregnant and while she is growing up. Doctors and specialist around the world still doesn’t have a clue about what causes it.

The time I started to accept her situation, I sought help of experts and because of that my daughter has improved in so many ways compared to the time she didn’t received any intervention.

The process of accepting the diagnosis and your child for what he or she is, is often gradual and painstaking. The best way to do is seek help.

Coming to grips with the diagnosis that your child has autism or any lifelong disability is an arduous process.  You may feel that you have lost your child forever.  Don’t feel bad about yourself for feeling such.  It took me awhile before I have come to grips and deal with my daughters autism.

There are stages every parent will go through:

1. Denial, disbelief and numbness -  “No she is not.” “Not my child!”
2. Outcry and hopelessness – “Why me?” “Why my child?” “What can treatment do?
3. Blame and guilt – “It must be what you ate or difficulties during pregnancy?”
4. Anger at the diagnosing health professional – “How dare he say my child is retarded!”
5. Clutching at straws – “Some said that this crystal therapy works.”
6. Bargaining – “He’s only globally delayed or borderline PDD”.

Often times, you find yourself wondering if your child will ever be independent, marry or live happy, productive life.   Just think of the following when you wonder about these:

• Children with autism or any lifelong disability can be helped in varying degrees.  Some can be taught to live independently no matter how bizarre they may have been when they were very young.
• Know what you are dealing with.  Learn as much as you can about autism, particularly know how your family can help.
• Keep the rest of the  family in perspective, do not forget that their concerns are just as important as your special child.
• Learn how to get help from your friends, relative, and other people.  The process of accepting the diagnosis and your child for what he or she is, if often gradual and painstaking.  The  best way is to look for help.

The 1st International Autism Conference in Manila will be hosted by Autism Hearts on February 3-5, 2010 at the Philippine International Convention Center (PICC).

The conference will present the most current research, knowledge, information, diagnosis, assessment, treatments and policies surrounding Autism Spectrum Disorder (ASD) in support of people under the spectrum and their families.

Among the presenters are leading experts from the Medical Investigation of Neurodevelopmental Disorders (MIND), an international, multidisciplinary research organization based in Sacramento, California.

There will be 11 Symposiums in all of which are the following:

To be able to sensibly manage your child’s problem, getting an early diagnosis is the best thing you can do however devastating it may be.

The best people to consult are developmental pediatricians, pediatric neurologist or a child psychiatrist as they have had enough training and experience in managing developmental disabilities. I know it sounds harsh but believe me this is for the benefit of your child and your sanity.

These doctors not only have sufficient knowledge but have dealt with a number of childhood disorders to make a reliable diagnosis.

However, since developmental specialist are quite few, in the Philippines only UP-PGH and PCMC train developmental physicians and you will need at least a year of waiting period to get a schedule for your child’s diagnosis and consultation.

Get an appointment as soon as you can and don’t ever delay consultation when you get one.

Autism is a syndrome and therefore it is a collection of many features. However there is always a severe impairment in the following areas: communication, socialization and adaptation.  It is a developmental disability that affects how a child uses languages and how they interact with other people and the environment.

What causes autism remains a puzzle, people can only assume and theorize.  Here are the common myths about autism going around which I hope in time will be corrected:

1) Autism is not an emotional disorder

Autism is an organic neurological disorder.  My mom theorizes that my daughters disability started after her not seeing her biological father after she turned a year old.  She taught she was traumatized and her way to rebel was to forget everything she knows ergo her developmental regression.

Headbanging and other stimulatory activities CWA’s do like nail biting or wall banging is not due to emotional problems but but rather of their frustration and anxiety resulting from the problems brought about their disability to relate.

2.  CWA’s become schizophrenic adults.

Developmental delay and deviant language acquisition are not found among schizophrenics.

3. CWA’s have normal cognitive potentials.  Within them are normal children waiting to be freed.

As a parent I still have this hope that she will break free from her autism.  Although she is fast improving the proportion of CWAs with average or above average intelligence is small.  Being it a syndrome there are levels of their development some are high-functioning and can have isolated areas of excellence (splinter skills) such as rote memory, mathematics or motor abilities.  Some are low-functioning where abilities and most other cognitive areas fall below average.

4. CWAs are cold and shun physical contact with other people.

Many CWAs are gorgeous people who seem to enjoy hugging and kissing but they have enormous difficulty reciprocating physical contact in a social way.