Our diagnosis story is similar to most of the ones I've read here... I'm the mother of Ryan, almost 6 and autistic, Richie, almost 3 and Maelynn, 15 months. Ryan does not communicate well, does not express needs or illness unless it's very general, and then we're not sure if it's echolaia from a speech program (at times he'll repeat "I feel sick" robotically). He is at a social/emotional 2 1/2 year old level. He is amazing... very smart, musically inclined, and is the sweetest little guy you could ask for.

My other two children are developmentally typical, and they adore their brother! I've even seen my Richie, on several occasions, try hard to stim just like Ryan, watching him from the corner of his eye. Richie does not care that Ryan is different. He loves his brother with sheer, unadultered, unbridled adoration that only a child can express. Our life is tiring and often difficult, and even going to church is a challenge. We feel isolated in a lot of ways, just by the nature of what we deal with. We live in a small town in central Texas and it's a sweet little place to be! It really is! But the resources for Autism and any other special need are few and far between.

I know what it's like to desperately want to know your child... to want to do the best you can for him, but be in between a rock and a hard place. We love on a teacher's salary, and God always provides what we need... but so often when I do get the rare opportunity to speak to someone who also has a child on the spectrum, they spout off resources and things we "simply must" do for our child... things we haven't been afforded. The best thing we hear? Seriously? "I have no idea what you're going through, but I'll listen and I'll pray." The "I know a child who does so and so" and "why don't you just do so and so" and other well-meant comments, in addition to being so tired of being told "oh, Ryan can't do..." or "Ryan can't come in..." well, you see. They have worn on my already weary heart to the point where I just want to be home, where we all belong and we're all safe and accepted. Where we all know we're doing the best we can to provide what all of us need. I love church... I love Jesus more, though.

I will carry my children, all of them, regardless of ability level, regardless of how they fit into culture or how well they sit still and listen to instructions... I will continue to carry them to Jesus, because He knows and loves all of us! God made our children, He knows them better than we do. I don't know where Ryan hurts, but He does. Ryan can't tell me or anyone else his name, but whether or not I understand how he does it, I believe that the Holy spirit speaks for him, just as He does for me when I'm at the end of my rope. When I'm hurt, sad, and scared... when I've overheard one more person make a comment... when we're left out of yet another something... He feels my pain, and He helps me recover and start over again. His Word soothes the stings of insensitivity and ignorance of others, and He gives me patience to explain, yet again... or keeps my mouth shut so that I don't make things worse. He gives me the smile on my face and the song in my heart. He restores my soul! He gives me the peace of mind and the joy I need to make it not only through another day, but the next hour, or minute at a time on the hard days. He gives me the wisdom through His word to make some sense and to remember that He is in control of it all, even the things that don't make sense. Thank you for this site, thank you to everyone who shares. This is one of the very few times I've felt understood, and that is precious.

More of our story is at thischristianmomsjourney.blogspot.com, simply because God gives my every experience that it might comfort someone else!

It's going to be alright, everyone! Cling to Him!

My nephew is autistic but able to express himself very well verbally.

He is only 7 years old and had the insight to ask his mother this question: "is it worse never to be loved or to not be able to love?"

(He has asked numerous questions of a similar kin, which seem beyond the understanding of a 7 year old child of normal intelligence. I am a teacher and have taught children from 5 to 8 years old for many years.)

He is loved by many people but I'd like help with the second part of his question. Can a person with Autism LEARN to love others if they don't have the ability presently?

How will I be contacted if there is a response to my question?

Thank you for your help!

First, I have to say that reading your "Welcome to My World" brought tears to my eyes. It could be our story. My son, Sean, just recently turned 5, but we've known for 4 years that he was at least 'different'. By 15 months, he still wasn't saying ANY words, and didn't seem to have an interest in the world around him like his brother did. At that time, he was diagnosed developmentally delayed. By 20 months we had him in speech, and at his 2nd birthday it seemed that a light switch came on and the child was speaking in intricate sentences. Still, while the most affectionate, cuddly child i'd ever known, he also had the most severe behavior issues I'd ever witnessed. It took another year, and a dramatic turn for the worse for me to have someone agree it was more than just toddler behavior. At 3 yrs 6 months my son was diagnosed PDD-NOS and ADHD. We had him assessed for OT and it made a HUGE difference in him. We also discovered a milk allergy, and quickly made changes to his diet which seemed to alter his behavior over night. We also learned that he processes things differently. I can't say "get dressed." It has to be a 'when, then" statement. When you get dressed, you can go play.

We start kindergarten next week, and we are both a little apprehensive. I created him a new school book complete with pictures of all the rooms, and staff to prepare him. His brother will also be in the same building, but he's nervous. They had a pre-k camp for a week in June and he only lasted 2.5 days. He had horrible behaviors, attacked the teachers, and the last day had a complete meltdown. They had read a story and completed an activity on turtles (which he loved.) On the playground, he found one. He wanted to put it in a box to show mommy and they wouldn't allow him to, and he didn't understand. When i came to pick him up, he had no idea he was in trouble, only excited that he'd found a turtle. When i explained why i was there, he was so upset "saying I'm a stupid head." Broke my heart. Later when i could discuss his behavior he said the school was 'scary' and that he had no friends and no one would like him. He has so many fears and desperately wants to be liked and involved. His social skills are not usually accepted though.

Sean has always been on the go....he was 4 before he ever slept through the night because he couldn't settle down long enough to really sleep. He has a real need to be jumping, running, crashing, etc. Often people just don't understand it because he seems so 'normal' and he gets treated poorly for being a 'brat.' Since he was a year old, his one true fascination in life is bugs. He is constantly collecting them and 'amylizing' them as he says LOL. He can get a book now and identify his finds and tell you a great many details about them. His life in general is very scientific in nature--he is naturally inclined to think that way. Perhaps its because science tends to be fairly black/white, and he, as many spectrum kids, lives in a literal world. We went to the mountains and my car was slowly climbing a steep one. I said, "come on car, quit crawling up the mountain." He responds, "cars don't crawl mom....they have wheels and roll." LOL He is the light of my life and tells me daily that i am his best friend and he will love me forever. He gives great hugs and tells great stories, but it's his insight that astounds me. One week when he was about 4, I had been secretly having a 'why me' week. We were in the car (where the best conversations always happen) and he says "Mom, God uses me." "What, how's that?" I replied. "He uses me to give you eyes so that you can see." WOW!!! He does indeed. I am blessed to be his mother, and am not sure I deserve the honor, but I am truly seeing life in a different way.

AUTISM….. What causes this to inflict triplets?

My beautiful boys were born February 17th, 1995 in Anchorage, Alaska.
Over the last 16 years, my life has not been fun, but it has been funny at times.
Trakkor, Tanner and Harley Hogan were diagnosed with Autism at the age of 4 by Dr.Brennan, an autism specialist. When given the news, I asked “What do we do?” He replied, “There is no cure, and no known cause.” My heart was broken. Being a mother of 4 daughters, who were bright beyond their years, I was at first mortified. “Now what!” I enrolled the boys in a school for kids with special needs at the age of 4 ½. They’ve been in schools throughout Anchorage for 12 years.
Many years ago, there were very few cases of autism in Alaska, and no facilities to speak of.

I was a single mother of Autistic triplets, a daughter in kindergarten, and their half-sisters Jamie, 16, Brittney, 14, and Nicole, 12. I can tell you, life was far from boring!
I slept on the floor in front of the bedroom door of my sons' room to keep them from coming out in the middle of the night and wreaking havoc. They never slept. They would throw toys at me, sometimes metal cars that would leave bruises and once even a black eye. I had to tape their diapers on, because they would tear them off and smear their poop everywhere! My day consisted of getting them ready and off to school, along with the other children, and then cleaning their room, toys, walls, shampooing carpets and sanitizing everything. I finally had the carpet in their room removed and linoleum floors put in so it would be easier to clean and more hygienic.

Now, on the lighter side, they were happy and very loving to their sisters and me. There were lots of hugs and kisses, eye contact, and the need to be held, loved and played with. This behavior was not consistent with typical autism. They also had an eating disorder called PICA. They would eat batteries, glass, metal, plastic, wood and other non-food items. They would rip everything apart and try to eat it, including their mattresses.
Most everything had to be removed from their room. No curtains, pictures, hangers, and absolutely nothing that could cause harm. I once put a wicker basket in their room for their laundry and by morning, it had been reduced to a pile of tiny twigs. Lesson learned. As far as their eating habits, they would only eat brown, room temperature foods such as toast, chicken nuggets, fries, steak, pork chops, etc. They would not eat fruits or vegetables so I would make them protein shakes to ensure they got their vitamins. After finally getting them potty trained at the age of 6, they were beginning to try new foods. That was a plus. No more diapers and better food choices.  In the meantime, we went through chickenpox, a broken femur, one ear infection and a couple of colds. Not bad, considering there are 3 of them!

On a more amusing note, once they got into a gallon of pink paint in the garage, which I was going to use to paint my youngest daughters room, and finger-painted my red van pink, half way up and all the way around! Nice! Then another time, Trakkor got into a bottle of black Rit dye that was in the laundry room. He dyed all of the clothes in there, as well as himself. It took 2 weeks for it to wear off his body and face. So for 2 weeks I had 2 little white sons and one black son. Everyone thought it was hilarious, especially my black friends. I actually thought it was funny too! Not so much about my van being pink though!

During Christmas, I had to keep the tree in a play pen, so they could not get to it. One year I set it up by the window, thinking all was well, when I noticed that the lights were not working. I then discovered that they had eaten the bulbs, plugged in mind you; all the way up as far as their little 6 year old bodies could reach. Amazing enough, there were no cuts in their mouths and they never got sick when they practiced this unusual eating habit.

Going back to the beginning, Harley was the first born weighing in at 2lbs, 15 oz. He was in the hospital for the first 6 weeks, coming home at 4lbs. Today, he is 180lbs and 5’8”. Yes, he’s a big boy! Tanner was born second, weighing 3lbs, 12oz, and spent 4 weeks in newborn ICU. Today he is 140lbs, and stands taller and thinner than his brothers. Trakkor, being born last, weighed 3lbs, 15oz and only spent 2 weeks in Newborn ICU. He is now 190lbs and 5’10”. Big difference!

Eventually, I found and agency who was willing to work with me and the boys, called The Arc of Anchorage. Care providers were few and far between, but Harley had a great guy working with him, and in that time he thrived. Other than that, it seemed we just floundered around; hoping providers would stick around long enough to make a difference. Then our case manager at The Arc informed us of a program in Mt.Dora, Florida at the National Deaf Academy. After some research, it seemed like a dream come true! The facility sounded wonderful, with promises of swimming pools, dog therapy, horseback riding, nutritional needs and many other things I felt the boys would benefit from. After 8 months of pleading my case, the state of Alaska agreed to send the boys to NDA for treatment. My heart was happy, knowing that they would receive the care and treatment they needed, but I was also very sad that they would be 5,000 miles away and I wouldn’t be able to be close to them every day.

As it turned out, Harley cried to come home every day, so after 9 months at NDA, I brought him home. They had nothing to offer him, and the program wasn’t what they promised. It was basically just another institution. There were a few good things, but no dog therapy, no horseback riding and no nutritional therapy either. I finally got Tanner home just short of 2 years of him being there. I wanted to bring him home sooner but they refused a medical discharge.
Trakkor still resides at NDA. They will not discharge him without medical transport, since he is a flight risk, which neither the state of Alaska or the NDA will pay for.
I was told by NDA that Trakkor would be brought out into the community, but that did not happen. I could bore you with details but I need to make this as brief as possible. Basically, I was deceived by NDA. My boys have suffered through inappropriate care while there. Trakkor broke his arm, and had other medical problems that I am now financially responsible for. Tanner, while there, escaped from the facility gates 3 times. NDA is located right next to a major interstate 8 lane highway where he could have been killed, as he does not fully comprehend the dangers of open roads. Please understand that there are some amazing people who work there, but there are also some who are not so great. My daughter Brittney and I witnessed a staff member cursing at a young autistic boy. He was unaware we could hear him or see him. I realized that Tanner may have been treated like this while he was there as well, for after bringing him home, he would stomp around the house cursing and saying things that are not said in my home. It was very discouraging, the say the least. It affected him to the point where he is no longer in my care. He attacked a security guard and a teacher at his school, and was placed in the Alaska Psychiatric Institute (API).

I am so concerned for my boys. They need professional help, but there is nothing in the state of Alaska for them. We parents of special needs children, have only the choice to send them out of state for treatment. We cannot monitor their treatment because we are not there to see what’s happening day to day. I will not let my boys fall through the cracks, and that is what is happening. My sons are being charged with assault and they don’t even know what that means! We need a facility in Anchorage that can accommodate our children’s needs, where we can see them regularly, monitor their care and progress, and be a part of their learning and treatment. Our children should not be sent away to some other state, where we cannot be a part of their everyday lives. How good can that be? Autism is not a fatal disease! It is a disability that can be maintained with love, support and understanding.

My children will end up in an institution, somewhere out of Alaska, where their mother, father, sisters, brothers, aunts and uncles will never be able to have full contact with them. They will forget us, but we will never forget them. I will fight every day of my life to ensure that one day Alaska will have a full service facility to care for our children who cannot care for themselves. Please hear me, and hear the voices of our children. They don’t want to be sent away, to never see their parents or families. We need to be a part of their lives every day.

Alaska is supposedly one of the richest states in the nation, and yet we have no facility for our disabled children, yet it costs the state millions of dollars to send them out of state for treatment, when we could have one here, in Alaska.
I have not seen my Trakkor in 6 months. He is stuck in beautiful Florida. But how beautiful is paradise without someone who truly loves you, and cares about what is happening to you?
Can’t anyone hear us? We are hurting, and our children are becoming more disabled than what they were. There are opportunities for our children. Let’s give that opportunity to them. They deserve a chance.
Written by a mother who wonders why…..

Our diagnosis story is similar to most of the ones I've read here... I'm the mother of Ryan, almost 6 and autistic, Richie, almost 3 and Maelynn, 15 months. Ryan does not communicate well, does not express needs or illness unless it's very general, and then we're not sure if it's echolaia from a speech program (at times he'll repeat "I feel sick" robotically). He is at a social/emotional 2 1/2 year old level. He is amazing... very smart, musically inclined, and is the sweetest little guy you could ask for.

My other two children are developmentally typical, and they adore their brother! I've even seen my Richie, on several occasions, try hard to stim just like Ryan, watching him from the corner of his eye. Richie does not care that Ryan is different. He loves his brother with sheer, unadultered, unbridled adoration that only a child can express. Our life is tiring and often difficult, and even going to church is a challenge. We feel isolated in a lot of ways, just by the nature of what we deal with. We live in a small town in central Texas and it's a sweet little place to be! It really is! But the resources for Autism and any other special need are few and far between. I know what it's like to desperately want to know your child... to want to do the best you can for him, but be in between a rock and a hard place.

We live on a teacher's salary, and God always provides what we need... but so often when I do get the rare opportunity to speak to someone who also has a child on the spectrum, they spout off resources and things we "simply must" do for our child... things we haven't been afforded. The best thing we hear? Seriously? "I have no idea what you're going through, but I'll listen and I'll pray." The "I know a child who does so and so" and "why don't you just do so and so" and other well-meant comments, in addition to being so tired of being told "oh, Ryan can't do..." or "Ryan can't come in..." well, you see. They have worn on my already weary heart to the point where I just want to be home, where we all belong and we're all safe and accepted. Where we all know we're doing the best we can to provide what all of us need.

I love church... I love Jesus more, though. I will carry my children, all of them, regardless of ability level, regardless of how they fit into culture or how well they sit still and listen to instructions... I will continue to carry them to Jesus, because He knows and loves all of us! God made our children, He knows them better than we do. I don't know where Ryan hurts, but He does. Ryan can't tell me or anyone else his name, but whether or not I understand how he does it, I believe that the Holy spirit speaks for him, just as He does for me when I'm at the end of my rope. When I'm hurt, sad, and scared... when I've overheard one more person make a comment... when we're left out of yet another something... He feels my pain, and He helps me recover and start over again. His Word soothes the stings of insensitivity and ignorance of others, and He gives me patience to explain, yet again... or keeps my mouth shut so that I don't make things worse. He gives me the smile on my face and the song in my heart. He restores my soul! He gives me the peace of mind and the joy I need to make it not only through another day, but the next hour, or minute at a time on the hard days. He gives me the wisdom through His word to make some sense and to remember that He is in control of it all, even the things that don't make sense. Thank you for this site, thank you to everyone who shares. This is one of the very few times I've felt understood, and that is precious.

More of our story is at thischristianmomsjourney.blogspot.com, simply because God gives my every experience that it might comfort someone else!

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.