Hi Pat,

It's late at night, and I really should be going to bed, but somehow I stumbled onto your website as I look for Christians who are also on the autism spectrum. My wife and I have 3 year old identical twin boys, both of whom are on the spectrum. Our younger one, Gabriel, was formally diagnosed today by our medical provider, and his brother Nathan will have his evaluation next Thursday by the same the panel.

We first received a medical assessment back 19+ months ago when they were only 18 1/2 months old. We chose not to get the medical evaluation for fear of it being a stain on their medical record. The assessment did recommend early intervention for them (here in Silicon Valley), so we went ahead and start reaping the benefits of the free resources until the age of 3 when we had to start paying out of pocket.

Both boys have made a lot of progress, but Gabriel was formally diagnosed with being moderately autistic on the path to being high-functioning. His biggest deficits are in the areas of functional social language, verbal and non-verbal social communication, and social reciprocity. His cognitive levels are solid, and he has a good vocabulary, but in social forums, he's clearly behind. His brother is a little better, but we fully expect him to receive a comparable diagnosis as well. We decided to go for the diagnosis now only because we simply can't afford the $5000/month out-of-pocket expenses required for our boys' therapy. We have a long way to go in getting the services required for our kids through our medical provider, but there is precedence, so we're banking on that.

I read your "Welcome to My World" entry, and I have the greatest sympathy for you and your family. We are going to be going through something similar in the coming years, though we're thankful we got the boys started early on their therapy. However, I read a line in the entry, "The first time I met with one of our pastors, he told me that God may be giving me this experience so that later I would be able to bring comfort to others who were going through the same thing." and I was stunned.

I've been hearing similar things from people on pastoral staffs, friends who are pastors, mature and godly believers, and I have to say, I can't help but passionately disagree with that comment. Not so much that this experience will allow you to help other people, but that your pastor stated, "God may be giving [you] this experience..."

Nothing could be further from the truth. That theological stance drives me absolutely insane...that's saying that God is the source of your son's Asperger and subsequent struggles. That then implies that God can dish out bad things to people. If that really is who God is...why should I spend my time studying about Him, sharing with people about my core beliefs, attend worship services, etc.? Why would I worship and follow a God who, based on your pastor's comment (and a lot of people's comments), is the source of pain?

I broached this subject with some of my mentors, my church's lead pastor included, and I was thankful that they didn't have a cliched, perfectly-shaped Christian answer for me. Nobody knows why our children have been afflicted with something this painful. Nobody knows why as parents, we have to suffer the indignity of having to make adjustment after adjustment (both in public and in private) to just get our children settled. I still don't know why both of my little boys are on the spectrum. I don't know how this will affect our future...my wife and I both felt called to some form of vocational ministry, but now we're clueless about how all this fits.

But I AM understanding one undying fact that one of my mentors made clear to me the other day. It is, perhaps, a more theologically and semantically correct way of restating when your pastor and my friends had been saying:

God WILL NOT waste our experiences. He WILL NOT let our pain and our suffering go to waste.

How that will manifest itself, I don't know. Perhaps it IS a ministry of sympathy and empathy to reach other families with special needs. I've stopped trying to figure it out simply because this no longer fits into the neat little box, and my brain isn't big enough to fully analyze things. I also do know that death and disease were never part of God's original plan.

I'm still learning about my children's disorders, and I'm hopeful. I'm hopeful because I have more than just the natural world (therapy) to fall back on...there's a supernatural component for me take advantage of. I'm grateful for a wife who also refuses to give up on our kids. We've got a long road ahead, but I'm learning again how to be grateful for a God who also refuses to give up on my two boys.

I recently had my first book published. It is titled: AUTISM IS A BLESSING. I talk about the journey my family has and is going through. I think it is so important to focus on the positive and what the blessings are even in the hardest of circumstances. Check it out at www.autismblessing.com. It is a great book especially for family's with newly diagnosed children, for teachers, therapists and anyone wanting to learn more about autism and what a family goes through especially after they hear "your child has autism". I just want to share the hope I have and how I have changed my attitude about autism. My son Charlie is such a HUGE blessing in my life. He has taught me so much through his autism.
Patty Myers
autismblessings@aol.com

I have a little boy, Joshua,who is 4 years old with severe autism. I could go into all of the details of his birth and how we found out about it, but perosonally, there is something greater to all of this...

I am honored that God choose my husband Jim and I to take care of a special needs child. In fact, I am so very thankfull each and every single day to see the new little flicker in his eyes all the time, knowing that in that "special needs body" there is a lovely little boy whom I love with all my heart.

So much so, I created my own peronal website about him, my Christian beliefs and ASD.

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..

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.......

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

A Mother's Thoughts at a Kindergarten Christmas Play

She is so excited! Her first Kindergarten play, the Christmas play. I've heard about it for weeks now and heard her singing the songs as she plays. Now maybe she's the one who should be nervous, so why do I feel sick? I anxiously await her to take the stage and quietly say a prayer. I don't want her to freeze up. If she does she will be so disappointed. I want everyone else to see the beautiful person I know. Will it ever be time, no disrepect but move it along chorus. I want to see my girl. O'kay, here they come. HOw does she look? Is she o'kay? What is her body language saying to me, her hands? She seems o'kay. Thank goodness! Everyone's on stage, time to begin. What? Is that a smile? Are her lips moving? They are! I think words are coming out;she's singing! She's really doing it! My heart melts and emotions flood my soul. Song over. Shew! Made it through one, looking good. Second song begins. Still happy, still singing. As the songs come and go she seems a little distracted and will stop singing briefly then back on track. Halfway through now and she is squirmming but good. To the unknowing person it seems nothing, but I know she is trying not to flap her hands and it's hard. She's happy, she's overwhelmed. She keeps it together all the way through. Many times my eyes well with tears, my face with smiles and my mind with memories. Not too long ago this would've never happened. So many programs like these at church and preschool have been heartbreaking to watch and sometimes impossible to participate in. I am so proud! What's more is she is so proud! You may say it's just a kindergarten play, what's the big deal? Who's not proud of their kid? Who doesn't want them to do well? I guess everyone does. It is just so different for me, for us. It's a miracle whether you take it for one or not. I know where we've come from. My daughter is autistic. I'm sure you had no idea. Most people don't, but she is. Because of that many special memories like this haven't been a reality. I look at her tonight and think we made it! She made it! We survived but better yet she was awesome! I couldn't be prouder if she had just won president, which she just might so someday if the scientist thing doesn't work out. There are so many things when you look at her you can't see but tonight she let you see a glimpse of her. Not autism, her, because autism is just a small part of who she is. And she is Amazing!

Written after Christmas play 2009 about my daughter, Lilli who is a proud Aspie.

URGENT URGENT
11 yr old Zakh charged with a felony!! Crime: AUTISM
Zakh had a meltdown at school because his FBA and PBA were not done. The two things the district agreed to do at the IEP they didn't do. He had a meltdown and when they tried to restrain him, he kicked the principal (once) and pushed the teacher (and her words she says 'I fell into the bookcase'...not that he pushed her into it.
He destroyed the room as they escalated his meltdown by nothing following the IEP.
The principal claim injuries...but no one went to a doctor or missed a day of work.
This is the good ol boy network in play. They want to get him out of the schools so they don't have to pay for his services..and yet the judge refused to let me homeschool him.
It is much more complicated...but he has his felony hearing 12 Jan...but when the district and judge found out this is all over the internet and international, they cancled the hearing. They are furious with me and the public defender has said this won't be good for Zakh. They want him to do a competency test with Dr. Dahoe in Little Rock. Zakh knows right from wrong, but not in a meltdown! The goal is to put him in the state hospital for the rest of his life!
PLEASE HELP SAVE MY GRANDSON!
I'd send you a link but I doubt it will go through.
I have documented EVERYTHING, every law they have broken etc. The DRC is helping with his IEP meeting (11 Jan) but not legal case. The state is doing an investigation. These people would not be doing this if what I'm saying wasn't true as I sent them all the documents I have.
PLEASE HELP, I'M BEGGING YOU. The public defender screamed at me "I DON'T HAVE TO TALK TO YOU OR THE MOTHER...JUST ZAKH! I asked you mean an 11 yr old autistic boy with MR?
And she yelled YES!
If you can't help, do you know anyone not afraid of Ft. Smith Schools?
Thanks
Carole Reynolds
479-459-2730

PS: Google Zakh- autistic and you will see the info about him.