The Top 15 Things I Need You To Know About Autism

 We, as mothers, as fathers, as advocates, as teachers, etc. are always putting our children first. Don't get me wrong; we should if we want them to flourish and grow. However, I think now, and then, parents need an outlet. We need to be heard. We spend so much time finding ways for our children to be heard, that we can forget about taking care of ourselves. This is not only unhealthy for parents but in the long run, it only hurts your kid's progress as well.

One area for me that is especially touchy is what I would like for other parents to know about the diagnosis, the lifestyle, our battles,  our wins, our failures and our mistakes. We are no different than other parents. No child comes with a manual and therefore every person I have every met with a child can tell me a story where they feel that they failed. That is only natural. But please keep the following in mind regarding my son and me.

• Please don't push your opinions about how to raise or treat my child. Advice is welcome. Criticism is not

• Autism does not define my child. He is so much more than that.
• Autism is not contagious so please don't act like it is.
• There is no cure for Autism, and you know what, I am OKAY with this fact. I don't want to cure Autism. I love Jacob just the way he is as does all parents.
• Please don't put limitations on my son because of what you have read or heard about symptoms, treatments, or prognosis. There is a lot of misinformation out there about Autism.
• Not all people with Autism look or act like Dustin Hoffman from Rainman. Don't expect my son to dazzle you with extraordinary gifts or talent. He is so talented in his own way so talk to him like you would anyone else. You will find that he has much to add to most conversations.
• My son can hear, see, and sense your mannerism so, please refrain from acting and talking about him as if he weren't in the room.
• Neither you nor I can predict the future so don't think that Jacob hasn't one. I will never give up on him so please don't either.

Autism Acceptance - A Good Place To Start Research

Click here to open this binder in a new window.



Here is another LiveBinder that I designed to help those parents who have recently had their child diagnosed with Autism. It is a great tool and it keeps your attention while diverting any worries that you are suffering from at the moment. There is some great information but not too much that will cause overload and shut down by parents and children alike. I hope this helps some parents. Please feel free to leave more links below if you feel there is something missing. For those that have been working the "Autism Scene" for a while like me, I also made a transition LiveBinder early this year that you may find some use for. I hope you enjoy!
Regards,
~ Holley

Learning To Live And Love Autism

Learning styles of Individuals with Autism - Autism Awareness Month

       

Learning styles of Individuals with Autism - Autism Awareness Month from Karina Barley - M.Ed.

I love quotes and to find this Slideshare full of great quotes was exhilarating and put a fire under me that helps me focus on the big picture which is getting Jacob to the point in his life where he is as happy as he can be as well as independent as possible. As you read each quote, stop for one or two minutes and think deeply about how that quote effects you and your family. Find a place deep in you to use that quote and make it yours, make it your child's; then forge on. FORGE ON!

Autism 101 by ASNV (Last updated June 2015)

     

Autism 101 by ASNV (Last updated June 2015) from AutismNOVA

Tips for Mom, Dad, and Extended Family and Friends

1. The first tip is to accept your child. Love your child. Accept him or her for their differences - not disabilities. They are the same child they were before you heard the "dreaded word Autism". We are ALL different, meaning that your child has the potential to grow over time with proper medical evaluations and the best treatments for him or her.

There are many emotions you will be having at this time. You may need to go through the grieving process straight away. That is NORMAL and OKAY! We all go through it and sometimes as they grow bigger, we will slip back into it for a bit. The stages of the grieving process include shock, sadness, anger, denial, feeling lonely, and ultimately you will be accepting. However, then you need to pull your bootstraps up and get to work. All members of the family and friends will go through the grieving process differently. The most important thing is to realize that each of you are still in mourning and none of you are doing it the "right way". There is NO right way. You have now become your child's biggest advocate, friend, fighter, mom, dad, friends, family, etc. 

Project Heart Touch - Finding Support on Your Autism Journey

      

Project Heart Touch - Finding Support on Your Autism Journey from Jodi Murphy

There are many emotions you will be having at this time. You may need to go through the grieving process straight away. That is NORMAL and OKAY! We all go through it and sometimes as they grow bigger, we will slip back into it for a bit. The stages of the grieving process include shock, sadness, anger, denial, feeling lonely, and ultimately you will be accepting. However, then you need to pull your bootstraps up and get to work. All members of the family and friends will go through the grieving process differently. The most important thing is to realize that each of you are still in mourning and none of you are doing it the "right way". There is NO right way. You have now become your child's biggest advocate, friend, fighter, mom, dad, friends, family, etc.

Quoted Autism Pictures - Proceeds Go To Nonprofit Organizations

These quoted pictures I designed are available for sale on my Donation Art Website. All of my proceeds will be donated to a nonprofit that promotes Autism Acceptance. Please share this blog post with your family and friends so they will understand the seriousness of raising acceptance for people that have Autism or Asperger's. Every little bit helps and I thank you for viewing this video and sharing with your social media sites as well as family and friends via email. Don't forget to check out our Overcoming Autism Facebook Page where we share uplifting stories about Autism that we find in the news.
Regards,
~ Holley Jacobs

How I Want To Be Treated

The way I wanted to be treated. The article I read talked about autistic people on Reddit talking about how they wanted to be treated and I agree with most of the things they have mentioned. For example, I am horrid with social interactions with new people and I’m as awkward as President Clinton when he got accused of cheating on his wife and he couldn’t lie at all about it during a press conference. To put it bluntly, I’m horrible at it and I’m completely blind to people's tone of voice and facial expressions. People, unfortunately, look at me like I grew a second head and I get embarrassed and it only gets worse from there.

I also love my privacy but people don’t listen to me sometimes. When I say I want to be left alone, I mean I want to be left alone. I am a very chill person so I can’t handle hyper children running around and screaming their heads off. I like relaxing either reading, writing, or just watching youtube. People, though, just don’t have good  common sense like some students at my school. It’s quite annoying when the person I don’t like start talking to me after I said don’t talk to me over and over again.

I’m quite blunt and I’m not subtle when I say something or ask something. It’s not my personality to be subtle and people sometimes don’t like that when subtleness and being tactful is the best solution. I would be a horrible politician and political leader of a party and country; however most politicians are snakes anyway so I don’t mind very much about that. Ah, dry humor. My favorite humor of all time. Insulting politicians aside, I’m not subtle and probably never will be.

Won't You Pledge Too?

Regards,
~ Jacob Klein
 ~ Holley Jacobs

Early Invention Is The Key To Success

Finally!! Those who can assist parents in helping their children recently diagnosed with autism have realized that early intervention is the key to success. I have struggled with spreading this concept from the time Jacob was diagnosed. As a pediatric nurse and a mother, I knew that Jacob was special very early on. This was 1998 and Autism wasn't even a word anyone knew about. I took Jacob to a specialist who diagnosed him with Autism.

Immediately, I went into "mom" mode. I started researching everything I could possibly find on the internet. There was not much information out there then and what was available was horrific. Long story short  - children with this disorder "needed to be put into homes because they would never amount to anything".  Well, that just infuriated me. I would be damned if anyone told me my son could not be absolutely anything he wanted and he could succeed and meet whatever goals he made for himself.

As his mother, a nurse, an advocate; I have worked raising awareness for not only Autism Awareness but more importantly to me, Autism Acceptance. I have a great example of what ACCEPTANCE should be the main priority for those with Autism. I have a small green puzzle piece tattoo on my right hand. Now, mind you, I have many other tattoos but all of them can be covered with clothes if need be EXCEPT my puzzle piece. This was a strategic move on my part. When I  first meet someone, I firmly shake their hand with my right hand. Since getting this tattoo, nine out of ten people will ask me what is means. AAAHHHAAA!!! Gotcha!! The door is opened for me to spread autism acceptance and the miraculous human being that is my son.

Would You Join Our Autism Project?

Jacob and I have been working on a project for Autism Awareness Month. We've made a plan to distribute different types of information in different media forms to raise awareness about Autism. We've been working together on this project which is very exciting for me. I love spending as much time with Jacob as possible.

Some things are assigned to Jacob and some are assigned to me. Other types of information are going to be completed with both of us working collaboratively. When it's all said and done we will have a lot of information for people who have the pleasure of having someone with Autism in their life.

The people we're trying to reach are parents who have just recently found out their child has autism. These parents may be scared, concerned, angry and going through a lot of emotions at the same time. I can remember that day as if it were yesterday even though it was over 16 years ago.

We want to help alleviate some of the stress that parents have especially when there are siblings involved. This can make the whole situation even more worrisome on many levels. Our main purpose is to provide these parents with current credible medical and behavioral information as well as advice, news and stories about others who are in or who have been in a similar situation. However, most importantly we want to give them help. We want them to learn about the autism spectrum and diagnosis itself through objective information as well as Jacob and my personal opinions and experiences.

Steam Heart of Gold

**Vitnir on Deviantart

Steam sent flying through pipes intertwining and interconnecting

Loud whistles and bells make noises as steam pumps faster in the pipes

They keep a heart made out of bronze and copper alive through it’s pain

Through its turmoil and through its happiness and it's depression

They keep a young boys life from shutting down

Keeps it from rusting and decaying through the boy's life

Though… the boy wants it to rust

He wants it to die because he is tired of the neglect

Tired of the abuse and mistreatments of friends and people he knows

He wants it to become cold and desolate

To be scraped and torn apart by scavengers

To be demolished and condemned like the days of steam punk

But soon, he realized he had been mistaken

He should live and excel and improve

Because he knew his steam heart was a heart of gold

And he would always care about others

This is Phoenix signing off.

April Again Is Here - Autism Awareness Month

We have made a video each April for Autism Awareness since 2011. We haven't done that this year. We have bigger plans but I wanted to share my three favorite videos. Jacob and I worked hard on these videos and I am proud to call him my son, my heart, and my soul. He makes me proud every day and there are many days I wonder how I got so lucky to have such a compassionate, caring son. What makes me so special? I now realize that it is not me that is special and I am supposed to help him but the exact opposite, in fact. He was given to me by God because HE is SPECIAL and he helps me on a daily basis. Watching him grow into a smart, young man has been a joy that no one can take from me nor share with me. It is something that only Jacob and I share and for that; 

I AM PROUD TO BE AN ASPIE MOM!!

Regards, 
~ Holley Jacobs

Sometimes Teens With Asperger's And Social Awkwardness Gets The Pretty Cheerleder

Youth on the high-end spectrum of Autism, formerly known as Aspergers' usually has a higher degree of social awkwardness. This social awkwardness can be doubly hard if the youth doesn't get the positive response they seek. They will then resort to one of two areas - they will retreat to their rooms that are full of solitude and not face the issue of socialization or they will feel the need to dominate a conversation. They will take control of the situation which is not great either as this does not promote "a true give-and-take relationship" **Source

This video really touched me as it portrays many aspects of signs, symptoms, and issues that youth on the Autism Spectrum scale deal with on a daily basis. The first, and most enlightening, is the surprise, gratefulness, and pure joy that the boy shows after realizing what the cake question meant. The video also shows the empathy of some great high school students. It is also great to see that "The boy with Autism can still go to prom with a popular, cute cheerleader" which fills my heart with joy, pride, and hopefulness. Next, it is obvious that the young man is very surprised as if he doesn't believe what is happening. His response is one that seems awkward in some sense but, at the same time, similar to the same way a young man asked to prom by a pretty girl would react.

I decided to write about this topic because of a situation that happened between Jacob and myself. I have been designing websites for a couple of years, teaching myself as I go along. Currently, I am working on two different platforms that I have never used before. When I take on these challenges, I like all the feedback I can get especially since I am teaching myself.

So I called Jacob in the office recently to view a few different options I had developed. First, like many Aspies, he was completely honest with me. He made some remarks that I took as productive and as critical criticism but he felt bad after he told me the truth and started acting very nervous and anxious. I could see it in his body movements, eye contact, fake smile, repetition of the same sentences,  as he paced back and forth around my office, etc. Those are just Jacobs' tell-tale signs of being socially awkward. This scenario brought up some issues that I, as Jacob's parent, needed to deal with and help him overcome the symptoms he feels about being in social situations.

Transitioning in social situations for those with #Asperger's can add another layer to social awkwardness.

Staying Optimistic - Day Four - Mendability

 These are pictures I took on Jacob's birthday in December coming home from dinner. I had taken each picture but it was not meant for them to come out like this. We were just having a good time playing with my new phone. I just happened on them the other day and was feeling so down about Jacob's resistance. I cannot tell if it is his Autism or if it is just "the teen years". Either way, we are not giving up! I am giving him to  process. Every child needs that even though without disabilities. I have never forced Jacob to do any therapy that made his symptoms worse or that he adamantly refused to do but he seems to want to participate. He is feeling really awkward just finishing his first year in high school. That is overwhelming in itself for all kids. I remember 9th grade and it was the pits.

Are They Different....Really?

“Asperger’s syndrome has probably been an important and valuable characteristic of our species throughout evolution.” Tony Attwood.

The term "teenager" can scare any parent.  Imagine if your teenager also had a disability.  People think children on the Autism Spectrum Disorder are different, yet in reality, they are more alike than you can imagine.  Although children with Asperger's children suffer social skills deficits and struggle with sexuality and relationships with the opposite sex, they have similar feelings dealing with parents' divorcing and bullying issues. 

Asperger's syndrome is a developmental disorder that can cause repetitive rituals, obsessions, oddities of speech, such as talking in a monotone, shouting voice or taking figures of speech literally. Teens with Asperger's may have eccentric behavior and inappropriate facial expressions, trouble connecting with peers, and clumsy movements.  Autism affects about one in 5,000 Americans and is associated with normal intelligence for some on the higher end of the spectrum.  Boys are three to four times more likely to have Asperger's than girls.  The teenager with Asperger's lack social skills that affect their behaviors.

They tend to have a high interest in one particular area, such as video games, history, or dinosaurs that they talk about constantly appearing manipulative.  These teens will either avoid eye contact or stare at people, making them feel uncomfortable. They wear what is comfortable instead of style.  They cannot pick up on social cues, lacking the innate ability to read body language, engaging in conversation and turn taking.

Chapter 2 - The Aspie Teens Survival Guide.

When I was younger, I used to be a lot more organized. I used to sort things by type, color, and size when it included something like my video games and things I like. Homework was not so bad till I got older when I would lose paper like people would throw away their change in a fountain. Even now I still have problems but I have preventions in place of that. 

In my IEP, I have a technology assist in it so I can use a computer provided to me to help with organization and with help doing homework. It provides me a lot help then binders, folders, and other substitutes. I am also like the author in that I am a concrete thinker. However I can think abstract, sometimes I just can’t help thinking concrete. The negative part is that I need specific directions on things. Most things I don’t but others I need it. 

For example, like the author’s, when my mom need’s her purse or needs something. I don’t usually know where it is so I ask where. When she tells me, I tend to ask where exactly or close to it. However, I am not always successful in asking or she doesn’t know. The same concept but a bit different from the author is that me and my mom go to the school and talk to the teacher’s and anyone else. I give them a presentation about me and my disabilities and others.  

The thing about tests is that my test studying habits are not good, I tend to not study which will be a downside later in life, but I have trouble with it. I tend to remember information well so I don’t tend to study. Though I acknowledge I need to, I still need to put the effort.  

And I don’t believe in cheating on any scale. I refuse to do so. I don’t think it’s right and it’s not worth the risk. Homework is not a major problem unless it’s on paper, then it will be an extreme problem for me and I will end up losing it. That is this blog post and I believe this was an extremely successful one and informational. I hope you have a good day and a good life. 

Bye bye people.
Signing Off,
Phoenix

Chapter 1 - An Aspie Teen's Survival Guide

I think when I hear the word syndrome is a condition that has affected the person in some way. It doesn’t mean it’s bad in any way. I agree with the statement in the book saying Asperger’s is a disorder that affects normal-looking people and they great at certain things but incapable of doing other things. 

They are challenged by social interactions, nonverbal and sometimes verbal aspects of communication. I have developed more than my fair share of close relationships outside of my family. However, it’s not a lot considering.  Ever since when I was old enough to come to my IEP meetings, my mom has wanted me to learn about my disabilities and learn about them. 

I kinda knew I wasn’t normal. I was socially awkward around people my age and I never had any long lasting friends except a few. However, I always got along with adults more than usual. I thought it wasn’t a burden I knew I could improve my position. My mom used to be a nurse when she was younger and when I was born, she knew I was not acting normally at the age I was at. She got me diagnosed with Asperger’s when I was very young. I don’t remember the exact my age though. 

And it is true that there is no cure for Asperger’s and they don’t know what the actual cause is. However, they believe that it’s hereditary so it’s false that it’s caused by immunization shots. There has not been any case of immunization shots causing Aspergers. I also agree with the author to not tell to tell your child they have AS when they younger. I would tell them when they are older so they can understand better. They might be disturbed, relieved, or burdened by the information.  

It will depend on how they feel about AS and how it affected them before then. It was a relief of sorts to me because I knew after I was not alone in my struggle and that I could get help. It was one of the best moments. Now those are my thoughts on the first chapter of The Aspie Teens Survival Guide. I hope you enjoyed the post and I hope to see talk more about Asperger’s and my life in general. 

Have a good day and good life. 

Signing off, 

Phoenix

Directory of Transiton Websites

                 

















This has been a great month in our household as we raise awareness and acceptance of those on the ASD. I wanted to leave you with a little more information but also some links for Transitioning your child.

Transition Timeline for Families

Age 14

• Explore future independent living and vocational goals.
• Explore personal interests.
• Obtain Social Security card if not done previously.
• Understand transition and what that means for your child.
• Review transition planning at all IEP meetings.
• Explore public transportation options.
• Explore career options.
• Sample various job opportunities provided by the school.
• Determine recreation, leisure interests, strengths, and needs.
• Identify independent living and self-care needs on the IEP.

Age 15

• Begin indifying appropriate adult agencies in the community.
• Sign releases for the referral to suitable agencies at least annually at IEP meetings.
• Obtain driver permit or State ID as appropriate.
• Evaluate for vocational and related skills and interests.
• Review and update transition plan.

Age 16

• Obtain driver's license, if appropriate.
• Sign releases for the referral to appropriate agences at least annually at IEP meetings.
• Explore part-time and summer employment options, if appropriate.
• Begin job training in community sites or school vocational programs.
• Refer to Vocational Rehabilitation or other appropriate agencies.
• Check with an attorney about guardianship, estate planning or a special needs trust.
• Check progress toward credits necessary for graduation and determine appropriate services and graudation age.
• Review and update the transition plan.

Age 17

• Take college entrance exams and complete applications, if appropriate.
• Sign release for the referral to appropriate agencies at least annually at IEP meetings.
• Apply for SSI in their birth month and Medicaid two months prior to 18th birthday, if appropriate.
• Made graduation plans or certificate of completion and attendance if appropriate.
• Plan for transitiona vocational training after graduation through the school if appropriate.
• Prevent surprises by knowing when graduation is and what services will be in place at that time.
• Check progress towards credits necessary for graduation and determine appropriate services and graduation age.
• Check health insurance needs if leaving school and not entering an 18-21 program.
• Discuss employment options of additional education training options.
• Review and update the transition plan.

Age 18

• Sign releases for a referral to appropriate agencies at least annually at IEP meetings.
• Gather information, review, and identify necessary services, including transportation. 
• Arrange to meet or tour adult services agencies and select appropriate service providers, confirm status.
• Review and update the transition plan.

I have started a Page for Transition Resources and will be adding to it as I found great resources. Do you have a great resource? Just let me know in the comments. Thanks so much!

Transition Web Resources

Please pass this post along. I would greatly appreciate it.

Regards,
~ Holley Jacobs

                                     

April Is Autism Awareness Month - Part 1

First, I hope you enjoy our newest Autism video for year 2015. If you enjoy this one, please see other videos like this on my YouYube Channel. There has been so much research, time, effort, and dedication to learn about Autism/Asperger's, find treatments, and offer assistance and support groups for parents and others who are actively involved in a child's life who is on the Autism Spectrum Disorder (ASD). I am going to highlight some of the major areas today and follow up each day with more specific information.

Please come back and visit our site for more information. You will not be disappointed in the information and knowledge you will gain from this series.

I intend to also add a page that has many other websites who offer more knowledge or specific help regarding many issues that children with Autism and their family face every day. I have also added a page for Early Learning Exercises that offer many children's websites for learning and growth during those all too important early years.

My son, Jacob was diagnosed over 15 years ago during a time when there was not much known about Autism and it certainly was not an everyday word that the majority of people knew something about. Most people's response would be "What's that?" when I would try to explain to them what Jacob was diagnosed with. There is so much information out on the internet now, I am having to open multiple windows to view each site. I will be closely monitoring which sites I place on the new page I am building for Autism Awareness Month along with the video I made for this month.

Many websites claim to have knowledge about ASD spectrum and offer great content but that simply is not the case. Many of those sites are biased in some way whether they are affiliates of the treatments or information they provide or they are just outdated material. I am not biased and in fact, like to know as much as I can about what new information is found lately in research and development for those who are on the ASD scale. I am not opposed or supportive of any particular therapy. All I can do is explain my son's symptoms and therapies we have tried and tested over the years. Some have worked great and others have bombed but that is no reason not to share them with others. As each child on the ASD is different from another, I intend to list as many therapies, tips, advice, feel good stories, and my personal experiences with Autism/Asperger's. So, let's get started.

Happy Birthday Jacob!!

Early Birthday With Brianna!

"Some wonderful pictures of my miracle baby this past weekend with his girlfriend, Bri!" 

Just wanted to show off some pictures I made from this past weekend. Jacob's birthday is on December 22, 2014 and he will be 17 years old. I never wanted him to feel anything other than the special and miraculous birth that he was.

Jacob's pregnancy was anything but "normal". I was on bed rest from five weeks pregnant. I had started bleeding and they were worried I was going to miscarry again. Jacob's father and I had already lost four babies. I took all the medicine they told me I needed and yet, still, we lost all four. 

Jacob was different though. He was special even before he was born. He was a fighter inside of me just like he is the protector of me now.

I  had to be on bed rest and see my doctor three times a week. I do not know how I would have made it through all of it without the help of ex-husband's mother, Judy, his sister, Jean and my niece, Krista. Jean would let Kris skip school to come and "take care of Aunt Holley" since she made honor roll all the time anyway. They were there for me through the whole thing. They would laugh, cry, eat, play Phase 10 or Rummy and anything else to get my mind off of what we all knew it was on. I, thought, of course, I am going to lose this baby too. 

Jean was so funny. She always is. We had been at her house the night before I found out I was pregnant with Jacob playing cards and having a great time. My ex and I had decided to stop trying to get pregnant. We had a great time playing cards that night. I will NEVER forget some of the stories that have been re-hashed over the years (I still feel so sorry for Sean's poor little feet).

What If

What If? 

I love this quote so much and it touched my heart so deeply, I cried when I first read it. It did not come from any site related to Autism. I simply saw it online and it beckoned me by saying - "What If?" - "What If?" - over and over again.

The story started last Saturday early in the morning around 3 or 4 am. I had been sick all week, went to the doctor and received medicine but it was not helping. I was taking Albuterol nebulizer treatments, cough, and cold medicine, and Tylenol, but I was still severely ill. Tony had gone to a friend's house, so it was just Jacob and me in the house.

I was sleeping in the bed, propped into a sitting position so I could breathe a little better, but was woken abruptly when I could no longer breathe. My lungs felt like they had collapsed and my body hurt all over so badly.

I could not catch my breath, but for briefs seconds at a time. It was then, I would take the deepest breath I could to deal with the times when I could not breathe. Jacob's room and my room are at opposite ends of the hallway. I had no way to call out to him. I could barely whisper much less yell for help.