Thursday, June 30, 2011


We took the boys to Karate on Tuesday. They both had a great time, but again Jackson was being Jackson.

The class for Jackson's age was first and when we got there they were playing freeze with the instructor as cardiovascular exercise and warm up. Jackson played right along with the running around and tagging each other, but he could not grasp the concept of standing still when the person who is "it" tags you. When he was tagged he would continue to run and touch people on his own. The instructor did explain the freeze part to him several times, but I don't think he saw a purpose to it and therefore would not do it.

The were also doing exercises like races where one kid would run to the opposite end of the room, while jumping obstacles and kicking a punching bag then run back and tag their partner who would then do it. He also failed to understand this one, he did not want to wait and could not get the kicking down right. I know it was his first time in this setting and with some of these activities, but again I know Jackson and by watching his face and actions you can see what he is grasping and what he is not.

It was difficult for the other kids to cope with, one boy was very vocal about Jackson "cheating"during the games and when Jackson was on his team he made it clear that he did not want him on his team and he wanted to change partners. This was very hard for me to watch, Jackson did not understand it or did not care, I am not sure which. I did not like seeing this kid be that way about him, but I know this is something I am going to have to learn to deal with on some level because he is always going to be different.

The instructor was good with him, he stayed patient and would hold on to Jackson and try to get him to watch the other kids do something before letting him try. He also tried staying on top of the behavior of the other kids and kept telling them it was Jackson's first time, he would learn and they need to be nicer.

Jackson had a good time and really enjoyed playing around the other kids, I can't say with because while he did interact with them, he did not really play WITH them.

We are going to keep him in the karate because he does enjoy it and hopefully it will pull him socially out of his shell a little more.

Sunday, June 26, 2011


Yesterday was a madhouse around here between company and the kids so there was no time to do any reading about anything.

Jackson grabbed a note card and stuck in a lit candle to set it on fire, luckily Maddux came and told me immediately. When I got in the living room there was no fire on it, but one of the corners was still red and smoking. There was no damage and most importantly no one was hurt. I talked to Jackson and reminded him not to play with fire.

Maddux decided he wanted to talk to me about "The Retarded Cop", a youtube video some a$$wipe put up that has a guy with Asperger's acting like a policemen. Their favorite phrase to use in the video is "Ass-Burgers". I thought the video was insulting before we found this out, now it is just disgusting. I had a talk with him about how you never make fun of or laugh at people who are different in any way because it is rude and because you never know for sure if it is something like Asperger's that is making them different. I am not upset with Maddux about this, he is 6 so he is still too young to really grasp the details about this thing we told him his brother has. It is going to be a learning and adjusting phase for him.  Now to a different topic before I start on the video again, which I could tirade about it and similar videos all day.

Yesterday we got Jackson's evaluation in the mail from the developmental pediatrician. It mostly stated back everything we told about Jackson. One thing I did find interesting was the comparison of behaviors to criteria for Asperger's.
Part I - Social Interaction: Jackson met all 4 criteria.
Part II- Behavior Interests and Activities: Jackson met items A & D
He met all criteria after that point.

Here is the criteria he was scored on:

Diagnostic Criteria for 299.80 Asperger's Disorder

[The following is from Diagnostic and Statistical Manual of Mental Disorders: DSM IV]
(I) Qualitative impairment in social interaction, as manifested by at least two of the following:
    (A) marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction (B) failure to develop peer relationships appropriate to developmental level (C) a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people) (D) lack of social or emotional reciprocity
(II) Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:
    (A) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus (B) apparently inflexible adherence to specific, nonfunctional routines or rituals (C) stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements) (D) persistent preoccupation with parts of objects

(III) The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.

(IV) There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)

(V) There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood.

(VI) Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.


He also recommended a book "ADHD: A Complete and Authoritative Guide" since Asperger's kids are at a greater risk of ADHD. I will look into this book after I finish reading "Asperger's Syndrome: A Guide For Parents And Professionals" by Tony Atwood and Lorna Wing. I ordered this one last week from Amazon and it has not arrived yet. Dr. Morton, the Developmental Pediatrician recommended Tony Atwood books as well while we were in the office.


Saturday, June 25, 2011

Random Thoughts

Last night I got to read some of the Asperger's Syndrome/High Functioning Autism kit that I downloaded from I will be glad when the hard copy arrives because electronic copy kept messing up and I was only able to read about 13 pages. Since I did not get to read much there was not much new information for me. I read about the past again, Hans Apserger his patients and the symptoms which I have touched on in the last blog. It also mentioned that no one knows the cause yet,but it has to do with the brain and genetics. It did have a comparison chart of strengths and weaknesses that I really liked. I will screenshot that and add it to this.

It introduced me to a couple of new terms that I liked. Executive Functioning and Theory of the Mind. I knew what both were, just have never heard that terminology. Executive Functioning is simply your ability to organize, plan, remain focused, and control inappropriate behaviors. Theory of the Mind is your ability to interpret meaning from another person's physical cues, such as emotional display and how that relates to you. These are both struggle points for Jackson. The had a list of items for Theory of the Mind that made me think of Jackson.

1. Difficulty explaining ones behaviors
2. Difficulty understanding emotions
3. Difficulty predicting the behavior or emotional state of others
4. Problems understanding the perspectives of others
5. Problems inferring the intentions of others
6. Lack of understanding that behavior impacts how others think and/or
7. Problems with joint attention and other social conventions
8. Problems differentiating fiction from fact

These are all things I have seen with him, but I have also noticed improvement in all the weak points and that is where we need to focus, on his improvement.
They gave some ideas to help school age kids with the Executive Function such as homework logs to track assignments, breaking large assignments into chunks to help him remain focused, setting closer to the teacher to reduce noise and distractions, day planners or PDAs, and posted schedules. While Jackson is too young for some of this stuff it is definitely some good ideas to keep in mind for the future and seating location and such could help him even in Pre-K.

Another thing as Asperger's is that kids with this tend to more likely to have other issues such as ADHD. This is something we need to keep an eye on. 

We learned through this process that he is low on ferritin which can affect his sleeping and behavior. We have been giving him iron and chewable vitamins to help with this. We also gave him Melatonin the night before at the suggestion of the doctor to help him calm down for sleep. For two days now he was went to bed and went to sleep without fighting and without being up and down numerous times. This has been a relief, we just started the iron and such so I am not sure if it has been luck, the iron, or a combination of both. I am going to keep updating his sleep behavior in here because that is something that this can help us tangibly track.  * *Unrelated side note: It is very difficult typing with the head of a 1 year old in front of the monitor that is trying to type as much as I am. If there are any typos in this part it is probably Alaina helping me. **

Today is Saturday so I do not have to worry about work monopolizing my day. I will hopefully get to do some real reading on this today and have some new information to write about in the morning.  I have still not looked into AS and the animal connection. I am putting that in here where it doesn't get lost in the shuffle of things I want to research about this.

Friday, June 24, 2011

Asperger's and Jackson

I feel terrible, but I did not do much study yesterday about Asperger's. Work and everything else just kind of consumed my day, that is really no excuse. So I am going write a little I know about it and how it has shaped Jackson.

It was first noticed in 1994 by Hans Asperger, a German doctor who had 4 kids in his practice who were of normal intelligence but were clumsy, could not seem to empathize with their peers, or communicate effectively. His knowledge and studies were not widely known until 1981 when Lorna Wing performed studies on children with similar behaviors. She coined the term "Asperger's Syndrome". It did not become a distinct condition until 1992. So it is still a relatively new diagnosis.

Some of the signs are normal or above normal intelligence, problems understanding non-verbal communication, problems conveying feelings or thoughts effectively, finding one thing and obsessing over it, and having a very literal view of others statements and actions, i.e not understanding others humor.

This is all Jackson, some more than others. Since we have his differences we have always referred to them as being "Jackson". We have known they were there but I would never call him different or odd because to me that is comparing him to something else and what is there to compare him to that is "normal". Every person is different and everyone has their quirks, some people just have more pronounced quirks and that is why I have always liked to and will continue to refer to his quirks as "being Jackson".

As far as the Asperger's similarities the one that leaps to forefront is obsession. If you know him, you know his world revolves around trains with Thomas being the product line and names that he can easily apply to the need,yes to him trains are not a hobby, toy, or desire they are a full fledged need. He just woke,said morning to me and went to watch Thomas as a matter of fact.  But he loves any trains, he can hear a train whistle and his eyes light up. We have a local park that has a small steam engine and in the train station for it they have a train table for the kids to look at and play with and he can spend hours in there playing with those trains, he loves going there.  We have always gotten him train movies toys because he likes, but I think on some level I have known he NEEDS these for a while now.

Another thing about Aspereger's is the intelligence. When he takes an IQ I know he is going to score off the charts. I will tell you now that I know he has genius intelligence. He can set down at a 35 piece puzzle, get the pieces out and have it together in minutes. If it is something that can keep his focus. He has done this repeatedly with Thomas puzzles, but he have a hard time with other ones. I think he is not interested in them so he does give them his full attention and focus. He can and will disassemble any electronics he get alone for a few minutes.

Another is he is very literal, if you make a joke he is probably going to miss it. It is not that he does not have a sense of humor, he finds lots of stuff funny. He just, to steal the phrase from my dear wife, sees everyone and everything else as "black and white". There have been several times he has seen me showing emotion of some sort or another and asked why I was like that, when I tried to explain he would ask why again. I could clearly see he had no concept of why the situation made me emotional and since learning about this I understand why now. This causes some frustration for him because if he does something funny that he didn't mean to be funny, and you laugh he will get very upset asking why you are laughing and it is very hard to explain to him how it is funny.

The non-verbal communication or communicating what is going on with himself has been a struggle for Jackson, but he is getting better. There have been many times something has been wrong or he has hurt himself and when you ask what is wrong the only answer you can get is "I don't know". He know what is wrong I just think he can find the words to express it.

He is dangerous combination of clumsy and fearless. This has caused him several boo-boos because he will do crazy stuff and climb anything over and over again and no matter how closely you try to watch him, he finds ways. I had him lay down for a nap one day and while I was in the living room the neighbors caught him climbing out his bedroom window. He has only done this once,  but that makes it scary raising Jackson because he is completely unpredictable, if the thought crosses his mind he will most likely try because to him there are no consequences. 

I am not sure if it related to this, I will have to research, but he has an amazing connection with animals. He loves all animals but his favorite is cats. He could lay there and pet a cat or dog that is still for hours. He communicates with animals like the rest of us do with other people.

For all of the challenges I cannot imagine him any other way. These things are what makes him Jackson and he is our sweet, caring, and loving boy who loves his daddy and idolizes his mommy. He is an amazing kid and you never know what is going to say or do from one moment to the next.

Thursday, June 23, 2011

6/21/2011 - 6/23/11 Diagnosis through early Post Diagnosis Day 2 Summary

Today we went to Jackson's appointment and he was officially diagnosed with Asperger's Syndrome, which is considered a high-functioning form of Autism. The doctor was great and gave us a good list of resources to utilize. He recommended we call and get a 100 day kit, which will teach us about it and help up figure what is next. We have been bouncing the idea among ourselves for awhile now, but did not want to invest a huge amount of energy in an assumption so we did not research it in great detail. Now I wish I had. I know only the cursory information about it, but we have plenty of tools to help us get started.

Emotionally, although it was expected it still feels like being hit in the chest with a ball bat. Not that this is a terminal issue or that there is no hope, just that we do have to figure how to best parent and support him from square one. I do not want to let him down or fail him and I know there are going to be mistakes, but I want as few as possible. I have this boding sense of fear right now because I have no understanding of what Jackson or the rest of the family is in for with this. I know it will pass as I gain more knowledge of this condition, but it is getting past this initial feeling that is hardest.

We are going to be a lot of research and I am going to be building a good library of books about Asperger's now.

I called because they provide free 100 day kits for people with newly diagnosed Autism cases. It provides information about it and helps to plan what to do next. That should be arriving in 7 - 10 days.

The next item in my personal agenda is to reach out and find some local groups to help us learn and to begin my library by ordering some books to read.

My wife has been researching gluten free diets where we can change our eating habits to better help him.

We are facing this as a family and if he has to have a diet or lifestyle change the rest of us are going to do it with him. He is only 4, but he is not going to have that stuff alone.


Here is a copy of the handout from the doctor:

Autism Resource Guide - Websites
Recommendations - 1

Resources for families of patients who demonstrate some signs of Autism –
Prior to Diagnosis

View video of typical development and delayed development.

Resources for families of patients Newly Diagnosed
Local Resources:
The Autism Program – (TAP)  is a Statewide program.  Locally, it is located at 904 W. Nevada in Urbana.  The phone number is 217 244-1395.  TAP provides a resource room with books, tapes, and free visual supports, social skills groups, New Diagnosis parent program, technical assistance, information and referral plus much more.
Family Resiliency Center - This is the local website for the above program.

CU Autism Network - local (Champaign County area) parent and professional support and networking group.

Illinois Autism and Technical Assistance Project
The Illinois Autism Training and Technical Assistance Project (IATTAP) is an initiative of the Illinois State Board of Education (ISBE) and join other ISBE initiatives as part of the Illinois Statewide Technical Assistance Center (ISTAC) providing training and technical assistance to schools in Illinois.  Has fact sheets and on-line training.

National Resources:
Autism Speaks – 100 day kit for Autism or Asperger syndrome - A personalized resource to assist families in getting through the critical time following an autism diagnosis

What is Autism, what are the indicators, treatment options.

General information, diagnostic considerations, discredited theories, well-settled therapies, unsettled or investigational treatments, doubtful or discredited methods, etc

General information about autism and life.

Autism Resource Guide - Websites
Recommendations - 2

Additional Autism resources

                Illinois resources

                Under “Resources” there are downloadable pamphlets and brochures on topics such as toilet training, preventing tantrums, and improving eating habits.

                Look under IRCA articles for helpful information on a variety of topics.

                Diagnosis, treatment, your child’s rights, family life

                American Academy of Pediatrics.  Health related topics, research

                Autism Fact Sheet under “Publications” and list of resource by state.

                Autism Resources and information as well as information on vaccines

                Medical aspects of autism, educational approaches, communication approaches,              and family reference guide

                General autism information.

                For the most interesting area, under “Resources” click the On-line tools button.

                Shows video clips of creating teaching opportunities

                Wrights Law - Information about special education laws, rights, and advocacy.

                Disability-related information and resources

            Resource information

Autism Resource Guide - Websites
Recommendations - 3

Autism Video Trainings On-Line – The Autism Internet Modules - OCALI
The Autism Internet Modules were developed with one aim in mind: to make comprehensive, up-to-date, and usable information on autism accessible and applicable to educators, other professionals, and families who support individuals with autism spectrum disorders (ASD). Written by experts from across the U.S., all online modules are free, and are designed to promote understanding of, respect for, and equality of persons with ASD. - The National Training Center on Inclusion
The National Training Center on Inclusion (NTCI) was established to support the overall mission of Kids Included Together (KIT) through training, technical assistance and resources of the highest quality for staff at all levels of experience.
It is our goal to provide an empowering learning environment that helps providers build practical skills that can be immediately implemented in programs.  KIT's National Training Center on Inclusion utilizes a combination of the latest technology coupled with live presentations by dynamic and experienced trainers and practitioners to support providers in welcoming children of all abilities.
 Illinois Autism Training and Technical Assistance Project
This video is a basic introduction to Autism Spectrum Disorders (ASD) appropriate for family members, school personnel including teacher assistants and general education staff as well as community members who want to learn about this increasingly prevalent disorder and basic effective strategies for interacting with individuals with ASD. 

Autism Resource Guide - Books

1. “10 Things That Every Child with Autism Wishes You Knew” by Ellen Notbohm
2. “Girls Under the Umbrella of Autism Spectrum Disorders: Practical Solutions for Addressing Everyday Challengesby Lori Ernsperger Ph.D, Danielle Wendel, and Liane Holliday Willey
3.  “Autism Spectrum Disorders from A to Z” by Barbara T Doyle and Emily Doyle Iland.
4.  “Everyday Solutions:  A Practical Guide for Families of Children with ASD” by Mindy Small & Lisa Kotente. 

Note: these books can be checked out from The Autism Program Resource Room, TAP, 904 W. Nevada, Urbana, IL
Autism Resource Guide – Websites
Recommendations – 4

Asperger Syndrome Resource Guide

Online Asperger Syndrome Information and Support Website (O.A.S.I.S.)
This web site provides articles, educational resources, links to local, national and international support groups, sources of professional help, lists of camps and schools, conference information, recommended reading, and moderated support message boards

Wrong planet is a web community designed for individual with Asperger Syndrome. This site provides a discussion forum, where members communicate with each other, an article section, with exclusive articles and how-to guides, a blogging feature, and a chat room for real-time communication with other Aspies.

Tony Atwood – This website is a guide for parents, professionals, people with   Asperger Syndrome, and their partners. (make sure you type the “au” at the end)

The Gray Center – Carol Gray – Information on social stories.

Independent living on the Autistic Spectrum. This is an online support group for    people with Autism or related conditions, including but not limited to Asperger Syndrome. We come together here to make friends, support each other, and share practical experiences and tips relevant to independent living with our condition. Our members live all over the world. The communication medium is e-mail.

Social Networking for Adults in the UK & Ireland with Diagnosed or Suspected Asperger Syndrome.

TEACCH is an evidence-based service, training, and research program for individuals of all ages and skill levels with autism spectrum disorders. 

The Autism Society of America.  General information about autism and life.

NICHCY stands for the National Dissemination Center for Children with Disabilities.  Use the search section to find information on Asperger Syndrome.

Autism Resource Guide – Asperger Books

1.  “The Everything Parent’s Guide to Children with Asperger’s Syndrome” by William Stillman.
2.  “Asperger’s and Girls” by Tony Attwood, Temple Grandin, Teresa Bolick, and Catherine Faherty
3.  “Through My Eyes: a life with Asperger’s” by Quinn Koeneman.
4.  “Asperger’s Syndrome:  A Guide for Parents and Professionals” by Tony Attwood.
5.  “Parent’s Guide to Asperger Syndrome and High Functioning Autism” by Sally Ozonoff. 

Note: these books can be checked out from The Autism Program Resource Room located at TAP, 904 W. Nevada, Urbana, IL

Here are some links that my wife has just given me.