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!

One Saturday evening 5 years ago, we were sitting in the pew with our four children at Mass. During the consecration, the priest held up the host and repeated the words of Jesus: “Take this all of you and eat.” The word “all” resonated in the spacious church and we realized that our 7-year-old daughter Danielle, who has autism, was certainly part of that “all.” But as we fixed our eyes on the consecrated bread and wine, we were both praying God in heaven; don’t let her spit it out.

 

Fortunately, when the time came a few minutes later for Danielle to receive her First Holy Communion, our prayers were answered. Danielle received the precious Body of Christ reverently. Kneeling together in silence, our family shared this very special moment in our daughter’s life, a moment we thought might never happen.

 

But our story didn’t begin that August evening. When Danielle was 4, she was diagnosed with autism, a neurological condition that affects language, social interaction, and behavior. Danielle is non-verbal and we realized early on that for her to receive the gifts of the sacraments she would require a different approach than what’s used for most children, including her two older brothers.

 

Like many children with autism, Danielle is a visual learner and uses a picture-based language to communicate. Therefore, she needed a visual, picture-based approach to learn what was needed in order to be ready to receive her sacraments. She prepared for her First Holy Communion using a variety of homemade teaching tools. With this approach, she was able to satisfy the bishops’ requirements of distinguishing the consecrated host from ordinary food and receiving communion reverently. We were so proud of her!

 

Some time after this, our son Brendan, a Boy Scout, was nearing the rank of Eagle. As part of this process, he had to organize and implement a special project. He remembered how we had prepared Danielle for her First Communion and told us that other parents “should not have to reinvent the wheel.”

 

Therefore, for his Eagle Scout Project, he developed a special needs resource library in our parish to be used by children who might require special approaches to prepare for their sacraments. Out of this we put together additional materials that ultimately became The Adaptive First Eucharist Preparation Kit, now available through Loyola Press.

 

This brings us back to the words of Jesus quoted at the beginning of our story: “Take this all of you and eat.” We believe that Jesus was reaching out to all people everywhere, including people with cognitive and developmental disabilities. We believe strongly that Jesus meant to include all God’s children and that is why we are so excited to see the Adaptive First Eucharist Kit available as a resource to help this all become a reality.

 

The Adaptive First Eucharist Preparation Kit contains eight pieces to enable children with autism and other special needs to participate fully in their faith, including picture cards to use during Mass that remind children of participatory behavior and a matching puzzle that helps the child distinguish between the Eucharist and ordinary food. This kit includes social stories and picture exchange communication system (PECS) strategies. The learning tools in this kit have been successfully used by Danielle and many children like her to fully experience their faith and become prepared to receive the Eucharist.

 

You can order the Adaptive First Eucharist Preparation Kit (ISBN: 978-0-8294-3580-1) by calling 800-621-1008 or visit LoyolaPress.com/special-needs.   

Mercedes and David Rizzo

  

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.

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!

I am a 41 year old man with aspergers. The church is in dire need of those who understand autism. I have all but given up on attending chuches. I have tried multiple churches over the past 41 years and I am essentially accepted nowhere. People just think I am weird. I try to get involved in ministries and I get the cold shoulder. People will chew their arm off to get away from me. I really want to participate in a disciple study or some other detailed bible study but I can't. Churches just don't understand I don't talk. I can, i just don't too often. Nothing to say. The words ususally come a day late. My anxiety level is so high that many times I can not verbally pray around others. There is no small group that will put up with you if you don't share or pray, but they don't understand how important it is for me nonetheless.

I hope you succeed in your mission. There is a whole generation of us coming, we are not being incorpoarted and will be lost. We get the lip service, but not the actions.
Rant over.

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.