What is Autism ?

      Many people have different definitions of what autism is and who they are. People think that if their child or teenager is speaking and has done every milestone on time, that they are the ones that don't have autism. That theory or thought is completely wrong, it doesn't work like that. I know several people who talk and are very verbal and have autism or any type of disorder.

       There are different kinds of autism and I browsed thru Web MD website and found this:

• 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.

     According to "Autism Speaks" website this is what I found that I would love to share with everyone on the statistics in people with autism in present time:

• Autism now affects 1 in 88 children and 1 in 54 boys
• Autism prevalence figures are growing
• Autism is the fastest-growing serious developmental disability in the U.S.
• Autism costs a family $60,000 a year on average
• Autism receives less than 5% of the research funding of many less prevalent childhood diseases
• Boys are nearly five times more likely than girls to have autism
• There is no medical detection or cure for autism

    Autism is something that is affecting a lot of families everywhere. There is no scientific reason why it is happening, but there are several theories to why. 



Learning the Basics and a New Start

      I took my daughter to "KidsPeace" for their own evaluation in which their psychiatrist asked me a lot of questions from the beginning of my pregnancy all the way to the present. OMG! It feels like you have to repeat your life to someone over and over again, but it didn't matter to me as long as I get help for my daughter. After almost two hour long session with them I had to wait 30 days until Angelina's services were approved and from there she would start with a behavioral therapist in our home. I was so anxious and nervous that I wanted it to go by quick. I had my cellular phone next to me all the time waiting for an update. Believe me those days pass so fast that you will not even feel it go by.

     At the same time, I had an appointment with "GoodShepherd" with a developmental pediatrician. Starting off with "Center City Pediatrics" as my guide on how I can go about services for my daughter was great, but waiting for that appointment in "GoodShepherd" was worth waiting for. Angelina saw Dr. Iyengar and she is an awesome developmental pediatrician ! Dr. Iyengar went over with me a long check-list with things that I had to do and what other type of therapists I had to schedule appointments with. The doctor recommended my daughter to see a speech therapist and an occupational therapist, but there was another waiting list to see a therapist in Good Shepherd. In the meantime I found availability in Lehigh Valley Muhlenberg Hospital until I got that call from "GoodShepherd".

     Dr. Iyengar wrote a script for a complete blood test of almost everything on my daughter, it was a general genetics blood test to rule out other stuff. These type of blood tests take a long time to get the results back, it was more than 5 weeks for the test results. I had to make an appointment with a genetics doctor in "Children's Hospital in Philadelphia" and get additional feedback from them as well. Angelina and I had appointments every week with someone or somewhere, I was driving long distances all the time. I learned a lot from the genetics doctor and it was a relief too because there wasn't additional things we had to worry about.

     My daughter's developmental pediatrician scheduled a 2-3 hour exam in "GoodShepherd", it's called an ADOS Exam which is short for "The Autism Diagnostic Observation Schedule". For a definition of what it means you can click here . I had to sit next to my daughter and could not say a word the whole time during the exam, as much as I wanted to give her the answer I couldn't. When the exam was done, I had to take my daughter outside with my grandmother and had to go in without her so she can go over the results in detail. My daughter was diagnosed with autism in which she was classified in the higher level. She can retake the exam again, but it was advised for us to wait a while and see if she has progressed. Us as parents have to understand that this exam is not a pass or fail test, it just helps us know it what level of autism our child is so when she does get the services of behavioral therapy, speech therapy and occupational therapy they can know what to work with her on more or less. From the range of 0 being nothing and 25 being the highest, Angelina was scored 16. 

     After several days pass by she was approved for services with "KidsPeace" and had therapy at home 5 days a week almost half the day. The other half of the day she had speech therapy and occupational therapy some where else, my daughter was a busy person for several months and years. Then came the time when Angelina reached grade school age and then I had an interview or I would say "another evaluation" for her to receive special services during school hours as well. Once she entered kindergarten, I had to discontinue speech therapy and O.T. therapy in "GoodShepherd" because there was not enough time or hours in the day for her to fit all this. Wow!! Angelina instead received Speech and O.T. in the school and still continued with her behavioral therapy at home.

     There is so much to learn that I am still learning until this present day, we learn something new as the days go by. It makes us stronger parents and know that no matter what we have to absorb, we have to continue and never give up. Autism is not a disease and there is no magical cure for it. Believe me when I say that after a long fight we do see results over time and know that we are doing something right for our kids. There were days my daughter would throw herself in the floor, cry so much or even hit others for no reason, but we just have to have patience. I remember until now that one day I was leaving "GoodShepherd" with my daughter and all of a sudden she was in the floor and cried for no reason, I didn't know what to do and was lost in words. I remember there was this lady that was leaving with her son who was a patient there as well and she told me "believe me things will get better with your daughter" and she told me briefly that she went through the same thing with her son when he was my daughter's age. I still remember this because now I really understand that things do get better over time....

Having another set of eyes

     Before Angelina turned 4 years old, we changed three different pre-schools because her teachers would say she was not focused in the classroom. My daughters speech changed dramatically and the little words that she knew to say, it was completely gone. I thought that her trip to South America had affected her speech in some way, but that was not the cause. It was so frustrating that nobody would point out to me that she might have autism. Not one pre-school could of said "I think she should be evaluated for autism". I was getting upset by everyone saying that because we were a Spanish speaking home, that was the cause of her speech delay. I knew she had to see her pediatrician ASAP once her speech went back to almost zero.

     I took her to "ABW Pediatrics" in Bethlehem, Pennsylvania and I just went off on her doctor & demanded some sort of answer. He observed her in the room and tried to talk to Angelina, but she would not respond back to him nor did she looked straight at his eyes. Her pediatrician told me that one of the signs of autism is lack of eye contact and the loss of speech. He tried to explain to me that as much as he is her pediatrician, Angelina would have to also see a "Developmental Pediatrician" as well.

     The second I went home, I went to Google and was able to get some definitions for every medical term he tried to explain to me. I guess I lost focus right after I heard him mention the word 'autism' and my daughter together in one sentence. I tried to call and search for a "Developmental Pediatrician" in the Lehigh Valley and found out that Good Shepherd has developmental doctors. Unfortunately, I called them and their waiting list was almost a year long which made me more anxious. What I did learn is that even though you are in a long waiting list, still put your name on it because it can always be sooner rather than later in that year wait.

     I was and am an impatient mother and even though I am in a waiting list for one doctor, it will not stop me from finding other doctors out of my area temporarily. My radius extended all the way to Philadelphia, Pennsylvania and went to Center City Pediatrics  which I got an appointment to see Dr. Berger in 4 days. When I scheduled the appointment I explained to the receptionist over the phone that I wanted to evaluate my daughter for autism, it helps when you explain to them because they can schedule it with the doctor and another specialized person who is also in charge to see if she has autism.

     Sometimes parents are in denial and decide to cover things like a band aide, it doesn't make us bad parents by doing that. It just makes us parents who worry about hearing a possible truth, it can be very difficult, but we have to take the next step in order to help our kids in their future.

     When I took my daughter for her appointment in Philadelphia, we were there for a long time and they observed her and asked all kinds of questions. Both doctors were very patient with my daughter and even though it took more than an hour of talk and evaluation, they were able to give me an answer. I knew it was autism, but sometimes you need a specialist to tell you those words "I am sorry to tell you, but your daughter has autism" those precise words can make any parent want to cry.

     Right away the doctor was able to give me prescriptions and explained the following steps that I would have to take in order to help my daughter. I am thankful to them because they guided me in what direction I should take with Angelina. Dr. Berger explained that there is a window in ever child with autism and I have to get her the services soon before it closes; in plain English this means that in order to help my child I didn't have enough time. I had to find someone ASAP to start the ball rolling.

     I was given a prescription for speech therapy, occupational therapy, physical therapy and behavioral therapy. WOW! so much therapies that I knew she was going to be a busy child and I was going to be a busy mom trying to make appointments, believe me it was very difficult and not easy to find something fast.

     Out of all the appointments that I had made for my daughter, finding a behavioral therapist was the most difficult one of all. I called several places and most were not accepting new patients and other were a year wait or more. They asked me several questions and one of them were my availability and I just told them anytime. A Behavioral Therapist comes to your home and helps your child with their speech and basically helping them go out in the outside world. It's a very long process and it is not a quick fix to any type of problem.

     I finally received the call from Kids Peace and "GoodShepherd" to see their developmental doctor.