Gwen’s life puzzle…some pieces are missing.
As a parent, at first we try to deny or hide to ourselves that everything was fine with our first born child Gwen. Even some of our friends tried to cheer us up by saying it is normal for some children are delay. Some says he was a late bloomer; it was too early to worry. But yet some where in the back of my mind we had some doubts. Gwen seems to be different than the other kids around. He had some unusual attributes. He repeatedly screams so loud, he refused to have a hair cut or even to see the glimpse of a barber shop. He doesn’t have eye contact. At his two years, he was still not talking. He had not said even one or two words. Every time I gave him a bedtime story he doesn’t even listen. I thought he was a deaf. He was continually not talking and his behavior became increasingly strange. He would run in circle, he didn’t seem to know what exactly to do with his toys. He is not even engaged in playing with other kids. On a several occasion, He was even hurt himself intentionally. Of all strange, unexplainable symptoms we were most alarmed by his increasing isolation. He was unresponsive, he is no longer seems to notice when another person was in the room. In some situation our neighbor saw Gwen walking alone in the middle of the road. He is not aware of the great danger that is ahead of him. He didn’t notice or mind when he banged his head. It seems he didn’t feel any pain at all. Those strange things and signs that can’t deny that something was wrong and I knew Gwen was facing a serious problem. Then my wife got a suggestion from her client at work who happens to be a pediatrician doctor. She said we should send our son to a developmental doctor for us to know his condition. We went to see a Developmental Pediatrician in Polymedic Hospital in Mandaluyong to check him up and we shared out our concern with the doctor. Gwen was about 2 ½ years old then. And that was the time I heard the word Asperger Spectrum Disorder or much well known as Autism. Base on the explanation of a doctor, Autism is a psychiatric disorder of childhood characterized by marked deficits in communication and social interaction, preoccupation with fantasy, language impairment, and abnormal behavior, such as repetitive acts and excessive attachment to certain objects. It is usually associated with intellectual impairment. And Gwen possesses all this symptoms. He was diagnosed with mild Autism. And according to the doctor, autistic might tend to be deaf. But in my son’s case, she assured to us that there is nothing wrong with Gwen’s hearing. After hearing that, it really made my heart sank on a deep sadness and depression. It was so hard, hard to deal with the news that my son may never be normal and there was no cure for his illness. It is a fate that I must accept. I lost my appetite for a week and unable to sleep. I could not think of nothing but only fear that our son might get lost to us forever. Then I woke up one beautiful morning and decided not just to sit down and let those fears eat my soul, I have to move before my son will totally take away by his illness. We keep on searching for other clues to help us deal with his condition. We were so obsessed finding out information that may help him. Internet helps a lot, and I found out the good news that there are now a wide variety of treatment options which can be very helpful. We were grateful to those parents creating sites which our family relates in their stories and hopes. I found also tons of information on how we should deal autism in some inexpensive way like by avoiding foods/snacks that may trigger his aggression. Some treatment may lead to great improvement and others have little or no effect. He had begun attending occupational therapy. The development was great. His tantrums lessen, his hitting and banging of his head suddenly is gone. It was so visible even our neighbors have noticed it. It was great for the first three months and therapy eventually had been stopped. Because we forgot that we are also suffering on another nightmare…which is poverty. We don’t have enough resources to provide Gwen’s need. I’m just a shoe salesman in the Philippines with minimum wages and my wife is a plain housewife. She had to give up her job as a Sales Lady after she knew her son’s condition. Because we both know Gwen needs full attention, care and guidance. No one could understand him as much as he understands by his own mother. Then I decided to leave Gwen and his mom for a while and found a job at Saudi Arabia. I thought I could give him a better assistance but it gets more complicated. For Gwen’s needs are getting higher and higher as we expected. According to his Occupational therapist who had seen him for months, Gwen needs Speech and ABA therapy along with the OT. And at the same time, he needs to go in a day care center or special pre-school in able for him to develop his social and cognitive skills. And my earnings were not enough to support all these Early Intervention therapies that are critical to the development of my son. Then we try to search other therapy center that offers a low cost fee. Again, Gwen was enrolled in a therapy center in Pasig City where he took a 2x a week/1 hour session of Advance Behavioral Analysis therapy. We pay Php 400.00 per hour of session. It only lasted for three months. His ABA and OT was on and off. Hardship, fear and anxiety are manifesting on our family. It comes to my mind to give up…give up my son’s life to grip by the hands of autism. The situation became worse and it’s getting harder as our child gets older. My mind and soul filled with bitterness and desperation. His behavior begun to regress, he had begun again to manifest bad behaviors like hitting himself, his mother and people around him. He was always on outburst anger. He banged his head on the floor. He slammed the door whenever he was frustrated. His behavior became unmanageable. I couldn’t bear to see my son being a prisoner of that strange and unexplainable illness.
Even he is no longer attending his therapy session. My wife was giving him intervention she had learned from the internet. But still, her knowledge is not enough to address our son’s needs. My wife familiarized him to things usually seen around by using visual pictures she had cut out from a magazine. She bought ABC books were used to teach him to read. And we were so amazed how Gwen has responded. He is a fast learner. His cognitive skills were extremely amazing. My wife starts to teach him how to write letters and eventually he had learned to write his own name. His hand motor skill begun to improved. And he starts to draw character from his favorite cartoons in Disney. And Gwen really likes computer. We were shocked when we knew Gwen can browse on the internet, and other hundred amazing thing he can. Then we decided to get him enroll in a special school. But after my wife have inquired in different school, our hopes begun to lose. Then one of my wife’s friend was introduced us in a public school in their city. Gwen was admitted in that school for school year 2009-2010. And because of that we transferred our residency from Mandaluyong City to Antipolo City where his school was located. We were so excited for the school to starts, when we found out that the set up has a huge different from a private school. Gwen goes to school only 2x a week. And in one classroom, 1 is to 5 scales. And every child gets only 20 minutes of intervention. Again, we start to worry. Because among the kids around only my son who has a mild autism. The teachers were also amazed with the things he is capable with. And according to them, Gwen can improve his skills and behaviors if he could be on a one on one set-up of intervention. Gwen participates well in class. In fact, he has more advantage than to all his classmates. He can read, write, draw and has a little comprehension in every command given to him by his teacher. But the problem was Gwen can not concentrate during his task because others kids were screaming, roaming and even crying. I was so depressed, thinking if only I could afford to send him in a private sped school. In able for him to get a proper intervention where his needs can be addressed. But with no choice, I have to face reality of what the real situation of public sped school we have.
My wife decided to go back to work again, a very hard decision we’ve made. She has to work in able to support Gwen’s therapy. Because of that we have to move back again to Mandaluyong for her new work located in the city. We pulled out Gwen in that school and transferred him to another sped school in Mandaluyong City. But we were surprised with set-up of his new school. They were seven special kids and only one teacher, and they are not a registered teacher. They are volunteer parents. And one thing really breaks my heart was they have no classroom. They were only had their classes on the stairs near the school gate. Which is for me is not comfortable, not advisable and very not safe for them. I and my wife agreed to pull him out in that school.
Now Gwen only stays at home with his Grandma. He is now 7 years old. And he misses going to school. He had also stopped from his Occupational Therapy. Every time I see Gwen. In my heart I knew we are blessed. I am not that poor after all because I have a bright and clever boy. Gwen is almost non verbal but his message was clearly seen. He is my inspiration and he makes me stronger. He gives me wider views on life, a wider goal to set and to face the challenges. The goal is not to make him normal. The goal is to unleash his special gift. Not simply taking damaged kid and make them whole but connect them with their special gifts, enable them to succeed in their special ways. Gwen is an amazing kid. The have a rare photographic memory, He has a pure heart, loving and a very warm child. All the gifts and potentials that he possesses that every parent wishes for. But we still facing hindrances on his recovery. He is no access to Speech, Occupational and Behavioral Therapy. Public Sped School had a limited service for children like him. And only private sped school can only give better education and living with kids like this. But it would be so expensive and we probably can not afford it. I’m not a doctor I’m just a father who love his child so much….a father who seek help for his son’s complete recovery. With your help and love, my son someday will be a freeman from being a prisoner of Autism.
We are appealing to you; we need help support for Gwen. We believed if Gwen could only get proper therapy intervention and proper education, he can be mainstreamed and can overcome Autism. And when he gets older he can be a great asset of this country. Many Autistic children had overcome autism, because their family is fortunate because they can get a proper intervention that they can provide. Some of them are working in a huge and reputable firm in this country. But what about us...what future lies to the children like Gwen. We also wanted better future for our precious son. He is our only child. And we can’t give him a brother or sister so he may have a companion as he grow, but we’re afraid so that we might loose the little support we can give to him, what more if we have other siblings. Gwen needs your help. Your generous heart can make our dream come to reality
Poverty + Autism are a perfect possession of a child to a miserable life. Gwen needs a miracle. It is more miracle of the heart than a miracle of science, a healing miracle of love and faith.
We see a perfect picture on Gwen’s road of recovery but some pieces are still missing.
PLEASE HELP US TO COMPLETE GWEN’s LIFE PUZZLE by giving assistance on his Therapy and Special Education. Whatever help you may offer will make a big contribution in developing and molding him as a human being.


Yours truly,
Mr. Celso Delos Santos Rase
Father of Autistic Child.
Celso_rase@yahoo.com

No, I'm not a mother with an autistic child, I am a father with two autistic children. You didn't ask for my story but I am submitting two links anyway.

http://seanmacnair.blogspot.com/2006/01/fathers-story.html
http://seanmacnair.blogspot.com/2009/09/blog-post.html

These stories represent two sides of the same coin, and are as honest as I can possibly get.

Sean MacNair

I am Jessica and I have 2 boys. Caleb and Nathan. Nathan is 3 years old and he does not have Autism. Nathan is a handful and a half but a smart,fun and loving little boy. Nathan has been evaluated and mostly just lacks social emotional skills. So for now we just have to keep a eye on him. Caleb is almost 5 years old and he has Autism. Caleb developed perfectly until he reached 15 months old. He went in for his routine 15 month check up, got his vaccines and a few days later had Salmonella (?). He was also hospitalized for breathing trouble.

During the next couple months I watched my son slip away from the little boy he once was. He was a talker and he loved playing with his cousin who is 2 months younger then him, When is was 18 months all he did was scream, head bang off everything he could, bite, hit, kick etc. He lost all his communication skills. At his 18 month check up I was told to wait it out because since there was a new baby around he was having issues. We lived with my brother and his wife and they just had a new little baby boy. I knew better but I did not want to think anything was wrong with him. I kept taking him back in and I was always told give it time. By his 2 year check up he was so far behind it was crazy.

We did start using a Birth to Three 5 months prior to him turning 2.By the time Birth to 3 came in his speaking ability was at the age of a 9 month old baby and he was 19 months old.
Finally I was given some information on where to go and I started the process. I could not believe it took almost another 4 months to get him in to see the team of doctors and the fee they wanted that state insurance did not cover. After 3 days of driving 170 miles round trip each day we got the Autism diagnoses with regression. It was so hard to grasp. I had never heard of it before and from what I read I was scared to death. The developmental pediatrician was a nasty rude careless woman. She blamed me for his behavior and said I was unwilling to try to help my son. I did everything I could. I drove so many times to get him help but these people always were playing the blame game. Well if you would only do this he would do better or your not trying hard enough, that is what I would hear. So I found a new Doctor who is a Neurologist and she has been wonderful. She has told me Caleb is High Functioning Autistic with ADHD and Bi Polar disorder. With meds he has done pretty well. Alot of his meltdowns are from lack of communication.

Caleb started school right after he turned 3 and this year he goes to kindergarten. He still is very delayed in his speech and other areas. He will have a teacher who has her own child with Autism which makes me feel better. He is doing a in home therapy program and he has come along way. It is hard to see him and then see his 3 year old brother just whizzing past him in everything. I cry because I can not make it better. I cry because there are some many things I want to try but we have no money to do so. All these stories about DAN doctors and GFCF diets make me have hope but we can not afford that treatment. We barely make it now. So for now we just have to keep doing the Speech, OT and in home program or he loses skills.

Even though Caleb has Autism he has always remained very loving and affectionate towards others. He shows empathy some of the time and he is the first to give a hug and a kiss. I would tell other parents just love your children the way they are because they are perfect. My son might not talk like others, play like others or act like others but he is perfect because he is mine and he is wonderful.

My name is Cassandra Rasmussen. I am from Concord, New Hampshire and I'm the mother of two children with autism. My daughter Larissa, age 5, is my oldest and the first of my children to be diagnosed with autism. When she was about a two years old my husband, Doug, and I had noticed that she wasnt really talking and seemed to have alot of tantrums. I was a little concerned after watching a t.v. program about autism because it seemed like all the red flags they mentioned were there. I contacted her pediatrician who agreed that she is delayed and recommended Larissa see a developmental professional within their office. At the appointment with her I went in thinking "Im not ready to hear this" Larissa failed her ages and stages assesment and I explained the tantrums and lack of eye contact and emotion. The lady asked me what my concerns were and I blurted out "autism". She nodded her head and refered me to a neirologist. He insisted the delay was temperary and she only needed a little speech therapy. I wasn't satisfied! I then took her to a team of specialist in my state and 4 hours later we heard the diagnosis, "Larissa has what we refer to as Classic Autism Spectrum Disorder." I felt my heart drop, as prepared as I was I couldnt believe it. She was a month away from turning three at this point and was recommended to the Concord NH Public school system. She started there in April 07 and is doing well. Although I do feel she needs more than she recieves I am in the process of pushing for more services. Throughout the process of getting Larissa diagnosed we found out that we were expecting another baby. I was really excited and had a great pregnancy even though I was under a lot of stress. We had our son Kaysten in October of 2006 and he was perfect. He seemed to be on schedule development wise and was doing well. Until around age two when I noticed again he really wasnt talking much and the words he did say werent making any sense. Already having Larissa I knew early intervention is key. My only concern was his speech he really seemed to be fine other than that. He was evaluated by a team of professionals and I was able to get him services for a greater than 33% delay in speech. He started working with an OT therapist who noticed he had a shake in his hands and some spaceyness and also he was a little over emotional. Based on history with Larissa I increasingly became concerned. I contacted his pediatrician and he recommended an eveluation with the developmental professional within there office. At his appointment he failed his ages and stages assesment and from there we got in contact with the same team of professionals that diagnosed Larissa. Kaysten went in in March 08 and after 4 hours we heard "Kaysten is strong in a lot of areas unfortunantly he does have sugnificant delay and we are diagnosing him with PDD-NOS, a form of autism." My heart broke. I didnt show much emotion and to this day I go with the flow but it by far was the hardest thing Ive ever had to deal with. It has been two months since Kaystens diagnosis and we are learning how to deal with it. Because he is under three still he gets early intervention services and is showing a lot of progress. Although this is a new experience with two young autistic children I think we are getting the hang of it. Larissa will be in kindergarden in September 09 and Kaysten starts preschool in October 09. I used to ask myself "Why us? Why our family? I did everything right I had prenatal care, I read the books, Why my children?" I dont ask that anymore, I now know that we were given these two beautiful and amazing children who may lack in some areas but they excel so much in others and although we face a lot of challanges now and in the future we are ready and willing to do all that we can to make our childrens lifes full and thriving. We now know that AUTISM IS OK!!!

I have autism. My three children have autism. A nephew has autism. We're not afraid of it or see it as a defect, something that needs to be cured or eliminated from decent society. My children have made a difference on an international scale many times. All three have been formally recognized for their many endeavors by the government of a G20 nation (usually G12).

Knowledge is the key. To have knowledge, we need accurate information ... not speculation or judgement.

Here's how I explain autistic thinking ... go outside on a clear night and look at the stars, planets and other things you see. Imagine how much more there is that's so far away, we haven't found it. Think about how long it took that light to reach Earth. That's the limit of an autistic mind. Is it any wonder this finite vessel we call the human body is sometimes incapable of handling such infinite potential?