Pea of Sweetness

Helpful Autism Resources

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April is Autism Awareness Month (I’ve even seen it called “Autism Acceptance Month”), and each year I usually post my thoughts on Autism Awareness or experiences as a mother of a child on the Autism Spectrum. This year, though, I wanted to change it up a little to share a round-up of Autism resources. I know firsthand how lost we can sometimes feel, and we scour the internet for resources to support us on our journey. Sometimes we can really feel isolated and alone.
All of our journeys are different, but you’re not alone. I wanted to share resources for a broad spectrum because I know, for example, although we homeschool our special needs children, many people need access to resources in the public school system. Although our son is young, you may have an older child or are an adult on the Autism Spectrum. Wherever your are on your journey, I hope you find this list of resources helpful.
(I plan to continue to add to this list of resources as I discover more helpful resources because I know there are many more. If you know of any you have found particularly, please do share! Bookmark this post for easy reference.)

Autism Resources

Autism Resources

I plan to go through those that offer lists and choose the resources I find most helpful from them to save a step, but I wanted to get a list of resources in front of you so you can easily find the resources your family needs. I am always happy to connect and talk with and pray with/for you any time you just need to connect or support and encouragement. Days (or weeks or months) can be tough, but you’re not alone – we’re not alone.

SimplyFun's Autism Initiative

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Having a child on the Autism spectrum, I love to hear about different things companies offer to those on the Autism Spectrum. I have enjoyed working with SimplyFun, and when they shared their Autism Initiative with me, I was definitely excited to learn more about it and share it!
Disclosure: I am sharing information about the SimplyFun Autism Initiative simply because I appreciate what they are doing. This particular post is not a sponsored post. Please refer to my disclosures within individual posts for information on the disclosure for that post.
Learn more about SimplyFun’s Autism Initiative in the Press release below, and stay tuned! SimplyFun graciously offered to let us review a some games that are recommended to build on common strengths found with children on the Autism spectrum.
SimplyFun's Autism Initiative
SEATTLE– (April 18, 2015) SimplyFun, LLC., is a developer of award winning educational board games that allow children to build their core thinking, academic and life skills through game play. SimplyFun is supporting autism awareness through initiatives designed to holistically support children with autism by both addressing their unique challenges and building on their strengths and interests. This extra focus on the child’s strengths and interests is unique to SimplyFun. It comes from their commitment to finding ways for all children to reach their potential, experience pride in accomplishment, and connect with family and friends.
To further their commitment to supporting children with autism, SimplyFun is introducing another approach to game analysis. Children with autism have many strengths that may be overlooked due to the typical focus on concerns. For this reason, SimplyFun is presenting how certain games in their catalog can capitalize on things children with autism may do well, while providing an important venue through which parents and children can connect.
“It has been such a learning experience to work with our Play Advisory Council experts, Dr. Toni Linder and Matt Brown to define an approach that we believe can help give parents of children with autism hope for their child’s future while creating a point of connection with their child through game play,” says SimplyFun President and CEO, Patty Pearcy.
“Board, card, and action games can serve a valuable role in the life of the child with autism” explains SimplyFun Play Advisory Council member and independent game evaluator, Toni Linder. “Through these types of games, children with autism learn to take turns, pay attention to others’ needs, communicate with and interact with others in a positive and motivating way.  Games provide a structured form of play that give children with autism a framework for engagement with others, a set of rules to follow to give them a sense of security, and a goal to work toward.  Games can also allow children with autism the means for expressing and sharing their strengths with others in a way that is nurturing and fun,” says Linder who goes on to say that “Many children with autism have strong visual or verbal memories, spatial reasoning abilities, interests in and skills with numbers or letters, and strengths in many other skill areas. Children love to do things they enjoy and are good at, so we want to help match games to strengths.”
Play Advisor Council member Matt Brown enthusiastically adds, “Last year, I helped develop guidelines for parents, teachers and other care-givers to find games that help remediate areas of need for children with autism.  That was valuable, yet only addressed one half of the child.  Children with autism also have great strengths and interests.  That is why I am more excited than ever to be collaborating on a new set of guidelines that will help adults find games that build on those strengths and interests.  I believe that everyone needs to experience competency and be valued for what makes them unique, since we are all our own snowflake.  And, children with autism deserve to be celebrated and encouraged to pursue their passions and grow their skills.”
About SimplyFun
SimplyFun produces award-winning games designed for educating kids and connecting families. Developed with a focus on making learning fun, SimplyFun games help kids of all ages, from toddlers to teens, develop communication, math and science skills, express creativity, collaborate with others and enhance their critical thinking. Founded in 2004, SimplyFun provides its Direct Sales Playologist consultants the ability to change lives with its educational games while earning unlimited income through direct sales opportunities in person and online. In addition, SimplyFun’s new Gameraising program gives schools the ability to earn much needed funds while raising the leaning and raising the fun. http://www.simplyfun.com.
About Toni Linder
Toni Linder, Ed.D., Professor Emeritus, Child, Family, and School Psychology Program, Morgridge College of Education, University of Denver, University Park, Denver, CO 20208.
Dr. Toni Linder is a leader in the field of early childhood development and early childhood special education. She works with children of diverse backgrounds and ability levels, including children who are gifted and talented, have disabilities, come from backgrounds of poverty, and those from multicultural backgrounds.
She is particularly known for her work on authentic assessment for young children and is the author of Transdisciplinary Play-based Assessment and Transdisciplinary Play-based Intervention (1990, 1993, 2008). In addition, she developed Read, Play, and Learn (1999), an inclusive, literature and play-based curriculum for preschool and kindergarten children to enhance their learning and development.
Dr. Linder consults nationally and internationally on assessment, intervention, early childhood education, program and curriculum development, family involvement issues, and the importance of play to children’s development. She has a particular interest in the importance of play for children with autism. Dr. Linder has conducted research on a variety of issues, including observation of play skills, transdisciplinary influences on development, parent-child interaction, curriculum outcomes, math and literacy learning, and using technology for professional development in rural areas.
About Matt Brown
For over 20 years Matt has been leading high-performing teams to develop vibrant business cultures, invent and launch high-impact branded platforms, and turn around underperforming brands and businesses. Matt consults with Fortune 500 and early stage companies. He has been an SVP at Scholastic, President of Klutz, Vice-President of LeapFrog, Chief Gaming Officer at Conteneo and Chief Stategist at Speck Design. He also co-founded a couple of companies including big BOING, and integrated strategy, innovation and development company that partnered with Kraft, Disney, Coca Cola, Nickelodeon, Hasbro, Learning Curve and others to invent, design and launch major domestic and international brands.
He clerked for Judge Oliver Seth in the 10th Circuit Court of Appeals, which means he used to be an attorney, but don’t hold that against him. He speaks at conferences, lectures at universities and writes for magazines.  Matt is an advisor for PBS Kids, GoAnimate, Vital Smarts and Eyefluence. Matt lives in Berkeley, CA with his wife, daughter and 3 dogs. Matt and his daughter are trying to visit all 50 state capitals. Boise is next!
SOURCE SimplyFun, LLC
Related links: SimplyFun Approach to Autism Needs
 

Light It Up Blue 2015 – What Autism Awareness Means to Me

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It’s that time of year again to Light It Up Blue, and today is the day! April is Autism Awareness month. World Autism Awareness Day is April 2nd. Many people put up blue lights or wear blue – all to join Autism Speaks to shine a light on Autism by raising awareness. It begins April 2nd and lasts all month long. Many are doing this in support of friends and family and many of us are living it every day and appreciate the extra awareness this brings!
But what is Autism Awareness? Last year I shared Brayden’s story – our son who is on the Autism Spectrum. I included how we discovered he is on the Autism Spectrum, what his diagnosis (PDD-NOS or high functioning Autism) really means, and our journey to diagnosis. If you don’t yet know our son’s story, I would love for you to read and share his story as well!
Why? Because it matters. Autism Awareness matters, and many of us are on this journey. In fact, 1 in 88 people are on the Autism Spectrum, but everybody’s journey is different. By sharing our personal journey I hope to reach others and raise more awareness. Brayden will be turning 9 this month, and I’m so proud of how hard he works to overcome his challenges.
Light It Up Blue for Brayden
I think we have made amazing strides in Autism Awareness, but I also think there is still a long way to go. I think one of the biggest challenges is understanding exactly how large the Autism spectrum is. As I mentioned in last year’s post, our son being high functioning on the Autism spectrum is both a blessing and a challenge. People who are high functioning on the spectrum are often misunderstood. Actually, I’m certain everyone on the Autism Spectrum is misunderstood, but those that are high functioning are often misdiagnosed or thought by others to just be “weird. Yes, many people have referred to Brayden as “weird” and it’s frustrating because they don’t understand he is on the Autisum Spectrum. To people who don’t see him every day or know him well besides “weird” we often hear things like “Oh, he’s just a boy.”
Just a boy? Boys are rambunctious for sure. We have two of them. Most boys like to ride bikes. Brayden can’t because his gross motor skills are weak and even with training wheels he tips the bike. Most boys like to play in the dirt. Brayden won’t because he doesn’t like to get dirty. In fact, getting dirty can cause a meltdown.
With time and therapy, Brayden has worked through his challenges and come a long way. It doesn’t change the fundamental fact, though, that he will always be a little different. And you know what? Different is OK. It’s who he is. Yes, there are things that are scary and we need to work on frequently – like hugging, kissing, and saying “I love you” to strangers is NOT OK. In the wrong situation, it could be dangerous. It brings a whole new meaning to not understanding “stranger danger.”

Light it Up Blue
Photo Courtesy of World Autism Day
It’s the responses, though, that makes me aware that others aren’t aware. Responses to those inappropriate social gestures which expand beyond inappropriate affection to just saying whatever is on his mind and wanting to do everything his way – no matter what everybody else is doing. And yes, being rambunctious. It’s the dirty looks, the shocking looks, or the inappropriate comments (like saying someone is “weird!”). Even the reassuring comments like “oh, he’s just affectionate” aren’t helpful.
It makes me realize people don’t understand at all. I often have to explain he’s on the Autism Spectrum, but does it matter? Would they still react that way regardless? It’s an insensitivity people have to other people that are different. Would it be easier if he looked like he had a disability? Maybe, but sometimes even then I’m not sure.
To me, Autism Awareness is understand the Autism Spectrum – all of it from those that are non-verbal to those that may appear to just have a few quirks. They all have their own set of challenges. It’s about acknowledging the full spectrum and accepting it. Sometimes I think family members have the hardest time to accept someone is on the Autism Spectrum, but trying to make it into something it’s not – something that isn’t debilitating and totally innocent doesn’t help them progress to the level they could with the right kind of understanding, acceptance, and therapies they need.
It’s time to accept that there are 1 in 88 people that are on the Autism Spectrum, so when you interact with somebody that can’t look you in the eye, doesn’t seem to have a filter, interrupts what you’re saying, shies away from you, doesn’t speak back, hugs you when they just met you, screams at you when they just met you, or whatever that difference may be, accept that that’s who they are and don’t respond with shock, disgust, or even words of advice. Smile at them, smile at their parents if it’s their child, and know that a friendly response probably just made their whole day better. Even better? Teach your children to do the same!
Together we can make a difference!

Light It Up Blue

So will you be participating in Light It Up Blue this month? Check out World Autism Awareness Day on Facebook as well! Do you want to help? Visit my Light it Up Blue page to learn more and make a donation to Autism Speaks. Check out some of the amazing pictures and buzz shared across the web for those that are participating in Light It Up Blue!

Cedar Point is Participating in Light It Up Blue

Since moving to Ohio I have had the privilege of becoming a Cedar Point Blogger, and I was thrilled to discover they are participating in Light It Up Blue tonight! Check out their live feed! Here is just one of the rides (photo courtesy of Cedar Point):
Cedar Point Light It Up Blue
Thank-you for participating in Light It Up Blue and helping to encourage Autism Awareness!
 

Light it Up Blue for Autism

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April is Autism Awareness month. World Autism Awareness Day is April 2nd. Many people put up blue lights or wear blue – all to join Autism Speaks to shine a light on Autism by raising awareness. It begins April 2nd and lasts all month long. Many are doing this in support of friends and family and many of us are living it every day and are grateful for this awareness! Check out World Autism Awareness Day on Facebook as well! 1 in 88 people are on the Autism Spectrum. Do you want to help? Visit my Light it Up Blue page to learn more and make a donation to Autism Speaks.
I wanted to share our personal journey with Autism as every story is different. Our oldest son who will be turning 8 at the end of the month has PDD-NOS, which stands for Pervasive Developmental Disorder – Not Otherwise Specified. For those that are familiar with Autism Spectrum Disorders you are probably familiar with PDD-NOS. Those that aren’t have probably never heard of it, and you might not anymore as there is discussion that they are going to start grouping everything into “Autism Spectrum Disorder.”
To sum it up – Brayden is high functioning on the Autism Spectrum. Sometimes a “high functioning” diagnosis can be both a blessing (because it absolutely is a HUGE blessing) and a downfall (for insurance purposes). Brayden currently receives Speech Therapy and Occupational Therapy, but even getting both of those is a push on our insurance because he is high functioning. He has never qualified for special services such as Applied Behavioral Analysis, which is covered under an insurance “extension” because he is high functioning (or mild by their definition), and it must be at least moderate to severe to qualify.
Light it up Blue
So, being an advocate for him has been frustrating at times! In that way, we have had to learn a lot about the Autism Spectrum and how to best help him. Because I homeschool I am blessed to be able to work with his special needs and be sure he is getting the help he needs?

So how do you know?

I often hear or get asked how do you know if your child is on the Autism Spectrum? I mean we also have two children with Sensory Processing Disorder as well – how are they different? Well, that’s for another blog, but my best answer to how do you know is this – go with your gut instinct. Whether it is an Autism Spectrum Disorder or something else – if you feel there is something “different” talk to your child’s healthcare provider about your concerns. If you feel they aren’t listening then push for answers!
Maybe it’s nothing, but maybe it is something. There may even be some incorrect diagnosis along the way or people ignoring you, but YOU know your child. I always encourage parents to ask for answers – demand answers.
Our journey with Autism actually started when Brayden was only 15 months old. He had maybe 3 words. It was definitely concerning, but to be honest, we just thought it was a speech delay at that time. He had some “different” behaviors particularly the drawn out screaming and fits which we associated with his frustration and not being able to talk. He was a happy baby. He didn’t really like to be held and liked to just kind of do his own thing.
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As he entered the toddler years he went from being the happy baby to the always frustrated toddler. When he started speech therapy it was brought up that he might have PDD-NOS. When I looked it up and saw “Autism,” I have to admit my response was NO. That’s ridiculous! There is NO way! I did put the idea in the back of my mind and then moved on.
When Brayden turned 2 my husband left for Basic Training. Brayden was in an Early Intervention program at that time, and his behavior at home was escalating. I assumed it was due to having a new sister (she was 4 months old when Joey left for Basic) and daddy being gone (except he called him “mom” because that was one of the few words he had at the time). He did well in the early intervention program and did OK in our weekly early intervention play group except he just couldn’t seem to “play well” with the other kids.

Waiting for his bus to special ed preschool
Waiting for his bus to special ed preschool
Once my husband got back we had to pack up and move to his first duty station in the Washington DC area. Once getting there we hit a “reset” button for Brayden’s therapy, and that was really frustrating. At that time his behavior hit a major decline and not only did he seem mad and frustrated but he also started getting violent. It was scary! I actually feared for our daughter because of his violent tendencies. Knowing how he hurt me I was very afraid of how he could hurt her.
What was I doing wrong? Why did my happy baby become so angry and mean?? It was really disheartening! Everything I had been learning for his Early Intervention was no longer working. It was at this point that I just felt that nagging – something is “off.” This isn’t “normal,” and I don’t think it’s “bad parenting.” Many parents of children with Autism Spectrum Disorders have heard more than once, though, that it’s bad parenting!
We finally got him in for a speech evaluation, and he did qualify for therapy. I felt like speech therapy wasn’t enough, though. I felt like there is definitely something more going on here. They sent someone out to our house once a week, but it was already the end of the school year, which is what the therapy program followed as well. So, she would only get to visit 3 times. That’s all it took. Brayden had one of his MAJOR meltdowns.
He grabbed Aurora by the head (which I obviously intervened), started hitting the dog, started hitting me, and then he started throwing everything he could get his hands on – at me AND at her. When a child gets violent with an adult they have only seen a few times it raises a red flag that something more could be going on. So, although, I was MORTIFIED by this visit she was glad to see this behavior so she could recommend him for further evaluation.
Kids and dog
I’ll cut out some of the middle here and say he was first diagnosed with ADHD and told he should be put on medication. We felt this was wrong and disagreed. After pushing for more appointments we were referred to a child psychiatrist. While I was talking to him Brayden started flipping over the chairs, shaking the weight scale, and then proceeded to dump out my purse and put a couple things in his mouth as he took out and lined up all of the pictures from my wallet. When asked if this was “normal” behavior I said yes.
He asked more about the putting things in his mouth at which point I told him he also bites and chews on almost everything wood and has left teeth marks all on his bed and our entertainment center. I was almost in tears at that point because it truly was embarrassing for me! It was then that I got my answer. He said this isn’t ADHD, although it is commonly misdiagnosed as such at a young age this is PDD-NOS. I thought back to when he was 15 months and wanted to smack myself in the face for blowing it off! Even though he explained Brayden is high-functioning I have to admit it was still a little disheartening to hear.

Brayden

After my initial feeling of discouragement with an Autism Spectrum diagnosis I realized we had to move on together as a family and do the best that we can. We have to continually be an advocate for him, and this attitude has proven to be extremely helpful. Although Brayden has not qualified for certain therapies due to being high-functioning we have made sure he does get the therapy for which he does qualify and there has been major improvement! There will always be things that are “different,” but it’s who he is, and we accept it as such while helping him become the best he can be.
It’s been quite a journey. There are still good days and bad days, and we have a lot of the journey still ahead of us, but it gets easier as we go – as we learn to trust God and learn more about Autism and where Brayden is now and where he will be. We have nothing but hope for his future, and I continue to pray that as more awareness is raised for Autism many children with Autism Spectrum Disorders of various degrees have bright futures ahead. As more people learn about Autism and educate themselves and others the journey already becomes much more pleasant!
Are you on this journey as well? I would love to hear from you!