Surviving Autism

Bringing the child to a physician or a family doctor is not enough.  Its not that they don’t know anything about it but they don’t know how to break the news in a manner the parents will be able to accept.  I experienced the same way with our family doctor.  He could have said it in a better way that will not offend me.  I should thank him for noticing something different with my child but I resented him after that. I hated him after telling me that my daughter might be autistic.  I rarely see him after that I resent him since then.  How could he say my daughter is autistic when he haven’t done any test or sorts to say such.

When is the right time to bring your child for an assessment?

If you feel there is something wrong with your child or you notice something different about her then don’t think twice get an assessment immediately.

Things to look out for are the following:

1. If your child doesn’t say any single word at 15 months
2. If your child is not able to say  two-word phrases by 24 months  (i.e. Mama eat)
3. Doesn’t turn to his name when called
4. Repetitive behavior or mannerism (holding his ears, circling around, hand flapping, wall or head banging)
5. Does not sustain eye contact
6. Apparent “regression” or loss of words that the child was able to use before
7. Does not bring objects to show to parents
8. Inappropriate facial expressions
9. Does not point using an index finger to indicate his needs
10. Does not show interest in playing or interacting with other children
11. Side-glancing
12. May have splinter skills like reading at an early age without understanding what he reads.
13. repeats what others say without understanding its meaning (parroting or echolalia)
14. May be oversensitive to sounds, sights, smells

Where to take your kids for diagnosis?

I highly recommend the Philippines Children’s Medical Center (PCMC) this is the best place to take kids with health problems or concerns.  They have all the specialist everyone would need and they have the network of all practicing development physician in the country.  However getting a schedule with a development physician is very hard so you should call as soon as possible.

The Medical City (TMC) also offers diagnosis for Php2,000.  This will take an hour or more of observing the child.  The developmental Pediatrics Program Clinic of  TMC offers surveillance and screening of children for autism and other related disorders.  You can call  (632) 6356789 ext 6630 for an appointment.

My daughter’s school year began this week and she got a new teacher this time.  I was apprehensive at having a new teacher for her but I was also looking forward to it. I want her expose to many new faces and people as much as I can.  Unexpectedly, she liked her new teacher and she did not cry like she did when she is familiarizing herself with her new environment or new people dealing with her.

The new teacher said she think my daughter liked her, Tasha gave her lots of kisses on the left cheek.  The new teacher also noticed the selective speaking my daughter is having lately.

She now points to things and vocalize some generic call for everything, essssssss (or sister would said etsch)  and ahkin (or her term for ice cream) .  Ice cream or the letter I was her favorite letter and word she learned from the alphabet poster we have on the wall now most of the things she likes or recognize she now calls them ice cream.

Kids with autism have two major difficulties socialization and communication skills.  Communication skills has different aspects the verbal (oral communication/ speech) and non-verbal (gestures other than speech).

My daughter show intent to communicate and would also do so through non-verbal means.  Some degree of volitional movement difficulties or difficulty controlling her mouth/tongue to produce voice or sounds was noted.  This is another factor that was considered that may have hindered her verbal language development.  Signs of oral and verbal apraxia was said to be evident.

Considering her present age, a more functional approach to communicate was recommended to her.  Despite significant deficits in language, she was seen to have strengths in communication in general as seen in her ability to initiate interaction.  These are the skills that can be maximize so as to create  a functional communication system both at home and in other familiar environment.

The dollar exchange rate had gone very low from Php47 when I started earning with my blogs to Php43 its really sad.  I hope the dollar will go back to at least Php47 so I can cash out in time for the next semester enrollment of my daughter.

We were already warned by the school principal that the fee will increase this semester.  Some parents and their children already bid their goodbye to the school because they could no longer afford the rates.

Her therapist also informed me of a rate increase in the hourly session which is a real bummer.  If this keeps up I don’t know which to give up the therapy or the school.  But my daughter needs both so I hope the economy in the U.S. picks up soon because I can’t exchange fund with Php43 rate only that won’t be enough for her tuition fee!

Special kids won’t hurt anyone unless provoked.  They are happy doing their things on their own and only tune in to things that interest them.  Its sad that the ordinary kids are afraid of the special kids, like my daughter.

I’ve observed this in numerous occasion I have my daughter with me on children’s party and other events with other kids who are mostly ordinary kids.  I guess because they can’t communicate with them and can’t understand them. Its true that people are afraid of things they don’t understand.

So does this mean people are trained to discriminate people who are not like them?

I told a mom friend about this observation I have and she asked how does my child feel when she is being discriminated or when ordinary kids avoid her?  Does she not feel inferior after?

I guess special kids like them don’t feel any inferiority complex or maybe they do but it doesn’t manifest.

I would often feel sad for my daughter whenever I see her trying to reach out to other kids and they avoid her or back off.   Although signs of insecurity doesn’t manifest on her and I don’t see any sign of insecurity with her I wish some ordinary kids will try to reach out to her and not fear her.  After all she is a child put aside her autism.

A shout out for Autism! Today,  April 2, 2010 marks the third annual celebration of World Autism Awareness Day! Thanks to the United Nations for issuing a resolution that will highlight a day that is dedicated to spread the world about autism.

Please read, sign and print this proclamation paper in support of WAAD and the people afflicted with autism. Thank’s for your support.

World Autism Awareness Day Proclamation of Support

- Whereas autism affects all persons regardless of race, religion, socio-economic status or geography;
- Whereas the incidence of autism in the United States is 1 in 150 and 1 in 94 boys, with rates appearing to have increased similarly around the globe;
- Whereas a child is diagnosed with autism every 20 minutes;
- Whereas on December 18, 2007 the United Nations General Assembly adopted resolution 62/139 World Autism Awareness Day by unanimous consent, encouraging UN Member States to take measures to raise awareness about autism throughout society and to promote early diagnosis and early behavioral intervention;
- Whereas the resolution designates World Autism Awareness Day as a United Nations Day to be observed every year starting in 2008 to raise global awareness of autism;
- Whereas the aims for World Autism Awareness Day are to inform the general public about the global health crisis of autism, stress the importance of early diagnosis and early intervention, and to celebrate the unique talents and qualities of individuals with autism;
- Whereas autism is a lifelong condition in which the bulk of cost calls in adulthood, creating an enormous economic impact;
- Whereas the consequent development challenges of autism threaten to undermine the achievement of the United Nation’s Millennium Development Goals and other internationally agreed development goals;
Now, therefore, let it be resolved that the City of ___________ implements the ideals of World Autism Awareness day in the United States on April 2nd in perpetuity until the cure for autism is found.

My daughter’s teacher is so proud and happy at the great improvements my daughter has shown over the past two years she has been with them.

Her teacher said compared to non-verbal autistic child she is surprisingly able to understand and follow verbal cues which is really great. She is now considered master of most of the skills needed by a child to survive, most especially her self-help skills.

Next school year, her teacher is thinking of extending her class and will include her to the socialization class! Yay! I am so excited!

Some kids will eat anything that is presented to them but not my child, she is a very picky eater. She doesn’t eat anything you give her but rather sniff the food first before putting it in her mouth. Is something in the ingredient of the food doesn’t agree with her sense of smell she won’t eat it no matter how delicious you think it is.

My daughter is 8 and no matter how hard I try to know what kind of smell turns her appetite on and off I still can’t. Just when I though I know which food she like, the next thing I know she doesn’t want to eat it anymore.

You see, when she likes a particular food she will eat it until she is tired of it. Which has an advantage and disadvantage. The advantage is that she gets to eat a lot when she likes the food and eat it at gusto. She will have it morning noon and night. The bad thing is what happens when she get tired eating the same thing again and again and again.

Finding the food that she likes is like a treasure hunt, I have to cook and shop for different type of food everyday.

The only thing she won’t turn down are chips that are bad for her, she can’t eat too much salty and food with a lot of preservatives.

People often look at me weird or have their eyebrows raised whenever I attend events and I bring my daughter with me. If I can read their mind I believe this is what’s in their heads “Why does she bring her daughter to events, isn’t she ashamed of her?” “Isn’t she afraid that the child might misbehave or do something weird that will disrupt and event, how dare she?”

Honestly, sometimes I hate when they stare at my child, I would love to stick a fork in their eyes so they will know that staring is rude. Sometimes I want to talk to those people people staring and say “She has autism, what’s your problem?”

They look as if she is bothering them, they look as if she has something infectious, they look as if they want to know what’s up with my daughter. I am super tempted to buy me and my daughter a shirt that have this insignia.

“I have Autism, What’s Your Problem?” for my shirt. “It’s called Autism, Look It Up!”

I bring my kid to places I can bring her as much as possible because I want to expose her to the world around her rather than keep her at home and contained to the activities she is involved with like her school and therapy.

I bring my kid away from her comfort zone so she will now how to behave properly when in public places and places where there are more ordinary people than special people like her.

I bring my kid with me to events I go to so people will be educated about autism and not be afraid of her likes because if you don’t do them harm they don’t harm you back. They are after all people like you but they are special and you are not.

My daughter never liked me reading to her, she takes the book away, throws it away and leave.   Or she gets the book go somewhere nobody sees her and read the book for herself.  I didn’t force reading to her because I don’t want her to think negatively about reading and hate it forever.  I do things according to her phase.

And this past few weeks is the phase she now likes reading.  I started reading to her “Where Did My Rain Puddle Go” a story book that teaches about evaporation.  The characters in the book were characters from Walk Disney’s Winnie the Pooh.  She was listening intently while I read to her while we are lay in bed.

I also point the words as I say it so she will recognize them as not just a bunch of stuff or wiggly lines and all but are actually words that mean something.  I show her the photos in the book and tell them who they are, what they are doing and I describe everything in the picture.

This is a habit for the past weeks now.  And I believe she can understand whatever I say because after reading and she is not ready to sleep I leave her alone and she enjoys her book on her own and will come to me when she wants me to tell her what is the thing in the book she is pointing.

She can’t talk yet but she makes the sounds , I say rain puddle, she says “pudzpudz”.

I’m so proud of her many accomplishments and improvements for the past two years she is undergoing  non-stop therapy and special tutorial schooling.  I’m praying for that one day we will talk like the ordinary people do.

Early intervention is very important if you want you and your child to cope with autism. Although its not a guarantee to correct or cure your child it can help a lot when it comes to your child with autism adjust to the ordinary way ordinary people do things in this life.

Research and experience are one in affirming the importance of early educational intervention in habilitating children with autism. While other alternative forms of therapy seem to be promising, yo should consider them only after you have firmly placed your child in an educational program.

It is unfortunate that there are a very few special education facilities in the country suitable for autism. Most of the special education classes (SPED) in public schools cater to a wide variety of conditions such as hearing impairment, Down’s syndrome, cerebral palsy, and many others. Children with this disabilities are special but they have different needs and keeping them together in one class will not optimize their learning.

Since there is not much option in the public schools, a private school or therapy center is your best bet in educating your child with autism. However these type of school are expensive as they use a very specialized curriculum meant for children with autism.

Depending on the assessment of your child, they may be assigned in group therapy, one-on-one sessions and other home program. The best schools combines all three.