by Pat on Sep 4, 2010 at 9:27 PM
Filed in Autism and Stress | Parenting Autistic Children
Hello,my name is maria. i have 4 year old twins boys that have autism.Our life change when we found out that they both have autism. This is a 24/7 job. I'm learning to be more patient and understanding with them. At first i thought that i had done something wrong to have children with autism. But soon i realized that i was not the only one going thru this. I've met alot of parent's thru my children's pre-school that are going thru the same thing as well as a co-worker. Day's are challenging at times but the most priceless times are when they call me mom!. It is challengeing being a mother of twins that have autism and seeing them go thru struggles and challenges. But the most part i love being a mother of my twins boys with autism. Is that god would never give me something i couldnt handle. I love my boys dearly. They have the most beutiful smiles ever..
My name is Maria and i have twins boys with autism and they are my pride and joy..
by Pat on Sep 4, 2010 at 9:09 PM
Filed in Autism Abuse | Autism and Stress | Autism Family Facts | Parenting Autistic Children
my daughter is 5 Shes autistic and adhd. I want my story heard i have no one that wants to listen. My child was born w cleft lip and palate so we expected a delay. By three she wasnt even babbbling or hugging and wouldnt answer to her name we would yell mady and shed stare off into space. I took her to dr after dr they all said its a phase shes ok. This child wouldnt sleep wouldnt eat had an obsession with silverware she hurt herself but never cried. They said its a delay shell do it when shes ready. By four still nothing tha tantrums got worse. Still just a delay or maybe shes a little hyper. In aug 08 She got out a lockd back door and ran down tha street. Dcbs got involved tha worker said ill bring you some locks and look into daycare for her because i was working third shift and i had 4 Kids. I called my husbnd crying and screaming he was rushing home and got into a wreck. He was life flighted to nashville tn. I was working third shift had 4 Kids husband in hospital and going to college. Mady didnt sleep. Shed look for her daddy. Mady got out of tha house again and i was charged with neglect lost all my kids for 30 days i quit school and my husband was in hospital in a wheel chair and couldnt help. Dcbs placed my older two with their dad tha baby with my husbands mother and mady with my sister. The worker said think of this is a break haha i broke down. She wrote so many untrue things in her report in order to keep my kids. Like dishes in the sink well yeah we jus had lunch. Laundry yes my washer had broken i was taking laundry to my mothers to do them. Just random things that made no sense. I told the worker i didnt know my sisters boyfriend and she assured me theyd do a background check. My sister took mady to a psychiatrist and she was diagnosed autistic and adha. I was allowed to go to that dr visit and he said i dont know how you kept hold of her this long and i just cried. Right before my court date my sister brought mady over and she was bruised all over her body she had been beat.......
by Pat on Feb 7, 2010 at 8:06 PM
Filed in Autism and Stress | Autism Family Facts | Parenting Autistic Children | Stories from Readers
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
by Pat on May 1, 2009 at 11:25 AM
Filed in Autism and Stress | Autism Family Facts | Stories from Readers
I am a sister of two brothers who have autism. one on the high funtioning side of autism and the other on the low end of autism. For those people who just believe it is really hard just for the child who is living with autism, that is not true. My brother Alex is autisic and it is really hard to deal with him because I never know when he is going to explode. You have to really understand how to cope with him because he explodes a lot and he also has Aspergers. I remember when my little brother first got diganosed and my family did not know whjat to do and it still is very hard to work with, but the challenges that I deal with everyday is when he is in a crabby mood and doesnt have the plan he wants and he starts to wail at my family
by Pat on Feb 6, 2009 at 11:59 AM
Filed in Autism and Stress | Parenting Autistic Children | Stories from Readers | Treatment for Autistic Children
Hello- I found your website after watching a video clip from Nancy Grace. I laughed and cried as I read the story of your family. So many issues are the same that we live with. I am a single Mom of an almost 10 year old son who was diagnosed at 4 with high functioning autism, hypotonia and developmental dyspraxia. He is a charming, funny 4th grader who has made huge progress in all area's of his life. We have had to deal with bouts of aggression, which have been scary for me. He is currently 5 foot 1 and almost as tall as his Mom! He takes the medication Luvox to help with his compulsive behaviors. The question I have is if you have had any success with medications for your son. he seems to have an off-cycle, he is tired and lethargic in the mornings and very active at night. he has trouble getting to sleep, and once asleep has trouble waking. It has been mentioned to me that a 2nd medication may balance him out and make his cycle more "usual". My son is defiant at home and school and does not want to cooperate with requests and demands. Michael is very bright, but does not comply with school work. He often has trouble focusing, especially if it is not a subject that interests him. I am looking everywhere for information that can possibly help my son.
Thank you! Looking forward to your book.