More stories from our readers…

I was talking to a friend today and some things came to mind.  Many people want to know why I fight with the school district and the State.  I have earned quite a reputation as a crazy mom.  There are many people that are happy with the education that their children are getting and wonder why I am not.  Well, let me explain it to you.

I have known that my son has autism since he was three years old.  I lived in a very small town in Illinois with the population of 1,200.  I had twin daughters that were 5 years old and were in all day kindergarten.  The town was having testing for children 3-5 years of age.  I thought it was to see where they were academically and what they needed to work on prior to starting kindergarten.  My son was three years old and the only child that I had home during the day.  I signed him up for the testing and took him up to the school.  I wasn’t sure if he would go through it because he was a screamer.  I don’t mean that he screamed every once in awhile.  I mean that he screamed 24/7.  For the first two and a half years of his life he would sleep for 30 minutes and scream for the next two hours.  This went on all of the time.  He didn’t speak or even make noises.  He never said MaMa or DaDa.  He just screamed.  When you tried to hold him he would arch his back.  He never reached for me and even really acknowledged me.  He just screamed.  I had asked the pediatrician and he said boys don’t talk as early as girls and some babies cry more than others.  So, they took him into another room for awhile and when they brought him back they said that if they felt that he needed to start Early Childhood they would call me within a week.  Within three days I received a phone call.  They weren’t sure what his issues were, but the district felt that he “wasn’t right” and put him into school.  They didn’t know what the problem was, but they were determined to find out and give the best that they had.

This was a town of 1,200 people.  Their resources were very limited.  I didn’t even know that my child had an issue.  I was blind.  Something that would affect my judgment for the next ten years.
These wonderful people put my son into a classroom of six students and two teachers.  They gave him OT and ST.  They worked on his social skills.  They worked on any issue that came up.  Not because they had to.  He didn’t even have an IEP yet.  They did it because they saw a child that needed help to be successful in life.  They treated him like a human being that needed guidance and support.  He was not another drain on their budget.  They had practically no budget.  It didn’t matter.  HE mattered.

When he was four they did some educational evaluations.  This was before the internet.  This was before anyone knew anything about autism.  They said that his tests came back with some very odd results.  They said that he was way at one end of the curve on some things and at the other end of the curve on other things.  There was nothing in the middle.  They said that he didn’t make eye contact.  I had never noticed this.  They said that he didn’t play with other children.  That he would only parallel play.  They said that he used dramatic and constructive play, but not interactive play.  He could name colors, count up to 12, and recognized numbers.  He could sequence objects by size and understood concept of big.  He needed a routine and things had to always be the same and if it was not it would throw him off.  He would flap his arms and rock when he became excited.  He couldn’t follow simple instructions.  He displayed a short attention span.  He was very interested in Thomas the Tank Engine and could name every engine, their color, and their number.  He could tell the name of a Disney VHS tape just by the font.   You could lay out the movies, without the box, and he could name the movie just because of the font.  I never even noticed that each movie had a different font.  They took all of this information and started reading.  They found that he exhibited many language, behavior, and socialization characteristics that may indicate a pervasive developmental disorder.  They included:  late talking, limited variety of responses, non-use of greetings, lack of conversation, lack of playing with others, limited eye contact, perseverative language, echolalic language, arm flapping, strange attachment to objects, and an ability to repeat video scripts verbatim.

When my son was five we moved back to Kansas City.  This is where my husband and I were raised.  We carefully called and interviewed every school district on both sides of the state line.  We wanted to make sure that Jake would get the best that Kansas City had to offer.
After several phone calls and interviews we chose Lee’s Summit.  I went and told the personnel here that the district in Illinois felt that Jake wasn’t ready for regular kindergarten.  They felt that he needed 1 on 1 or small group instruction for at least one more year.  It stated it in his IEP.  Lee’s Summit assured me that they were a big district that could handle all of his needs and issues and that the best thing for Jake was going to kindergarten.  Once again, I was blind.
Jake went to Prairie View from kindergarten through sixth grade.  He had some amazing teachers there.  They were kind, supportive, and made accommodations that his IEP didn’t call for.  We had no issues there.  I truly felt that we had picked the best school district that we could have.  I volunteered in his classroom every week for at least 2-3 hours.  I helped with the school carnival.  I helped with health fair.  I wrote to the Kansas City Star and told them what an amazing job they were doing with my son.

I didn’t know much about autism and I felt like the district was doing all that Jake needed.  Little did I know that when he got into high school my only hope for him would be living in a group home.  That is where we are now.  On his IEP the district has decided that his transition program would be to live semi-independently.

WHY?  Because the district never addressed his autism.  They didn’t address his dysgraphia.  They didn’t address his social issues.  They didn’t address his written language issues.  Why didn’t they?  I didn’t demand it.  In seventh grade the only goal he had on his IEP was to be able to write a paragraph.  This is a child with autism, dysgraphia, and a written language deficit.
I thought that you had to believe in the experts and trust them.  That blindness has caused the loss of my son’s independence.  If I had educated myself and fought for him, he would have a different future.  His future was stolen and I stood back and let it happen.
I gave the school district a five year old with potential.  They have given back a child that will never leave home.  I let them do this to my child.  My silence and acceptance granted them permission to destroy my son’s future.  He could have been an independent taxpaying citizen.  Now he will be a burden on tax payers.  Not to worry, Lee’s Summit.  You have no group homes here, so he won’t burden your city.

Your children still have a chance.  Your children still have a future.  I pray that none of you ever have to read the following and have it apply to your child.  But, if you continue to sit back and do nothing, you will face the same situation that I face today.  I let the State of Missouri and the Lee’s Summit School District steal my son’s future.  I will live with that until the day that I die because Jake will be living with me until the day I die.  What will happen to him after that, only God knows.  I pray that you never have to go to bed at night and think about that.

Sharing stories about their children!

People all over the world are sharing their stories! I love it!  Here is one from Tina Betler, just as she wrote it:

“Dear Karen,

I am glad you’re keeping up with everyone about your son. I
have to tell you, I was really kind of happy to find out that my first
son, Spencer, was diagnosed with PDD-NOS at the age of 18 months.
Although, I knew he had autistic tendencies when he was 8 months and
mentioned it to his OT when he was 10 months. I had taken Spencer to a
Developmental Pediatric when he was 10 months and they said he was
normal, he was a typical baby. Mind you, I already had Early
Intervention with the help of his regular pediatrician and my
pressuring. I had my Service Coordinator attend all of our appointments
with the Developmental Pediatric. So he was getting the help while all
of this was going on anyway.
I took him back 6 months later to the same doctor. Again,
there was no diagnosis given. Unhappy with their results, I wanted a
second opinion, of course. This one was without the coordinator. But I
had a gut feeling that all was going to go well. I had heard many people
talk down about this particular Developmental Ped. because of her
‘personality’ and others praise her. My thoughts were not how she
presented herself, but rather how she handled the testing she would
administer. We were in the room not 5 minutes and she said that I was
right about his condition! She noted it in her report too. We were there
for about a half hour when she diagnosed Spencer with PDD-NOS. I cried.
Not because of the diagnosis. It was because she understood my
frustration and my extreme persistence. I recommend her to many other
families!!
I didn’t get to see her for my second son. That was a bummer!
But I did get to meet a new doctor for Eric. He had two degrees.
Pediatric Neurologist and Developmental Pediatrician. He was really good
also. We had a GREAT conversation concerning Autism and Angelman’s
Syndrome, and the similarities and differences of the two. I also
brought up the idea of chromosomes and genes. To my surprise, the doctor
went along with it. He said he liked the way I was thinking. He was
quite amazed by my understanding of the medical field and my
enthusiasm.  I was skeptical that Eric had the same condition as
Spencer. They were totally different! After that, Eric went back about a
month later. I agreed with his diagnosis, PDD-NOS, Microcephaly, Static
Encephalopathy, and Hypotonia. Both of my boys received the maximum of
therapies: Speech, Occupational, Physical, and Special Education through
Early Intervention and Preschool.
Spencer’s diagnosis changed to Asperger’s Syndrome and Eric’s
is the same. But! They are doing extremely well in school and the
community. They get services through Lexington Family Services. Not just
Respite, Slumber Camp, Support Groups and celebrations. They make
friends all by themselves.
We  struggle through some days still.  Sleeping through the
night, homework time, emotional breakdowns, bath time, game time,  being
nice to pets ( getting better), sibling rivalry ( who gets most of Moms
attention!), picking up after themselves, hitting/slapping to get a
reaction (not to be mean, but to initiate play).

P.S.

I am also on the Family Support Council and Autism Support Group, and am
trying to come up with some New ideas for new services. We’ve had a few
turned down. Have you used services  for Jonny that he really enjoyed
and aren’t a “typical” service? Something like: learning how to play an
instrument/s, cooking, dancing,  writing (books or plays),  One on One
Behavioral help?
We have Homework Club which was one of the best! Hourly Respite, After
School Respite, Autism Support Group, Parent Roundtable Support Group,
Strengthening Families (put on by another agency in our building), Girls
Cooking Class, and Music Therapy.”

Thank you Tina for sharing your story!

hyperbaric therapy in the real world…

I have talked with several people who have had Hyperbaric Oxygen Therapy (HBOT), or know of others who have had this type of therapy. This type of therapy  has been known to show promising results in the treatment of autism.  HBOT involves the breathing of pure oxygen in a hyperbaric chamber – pressurized above one atmosphere absolute (ATA).  Originally utilized to treat a life-threatening condition known as the ‘bends’, in divers, its therapeutic use has expanded to include carbon monoxide poisoning, gangrene, osteomyelitis, and, more recently, autism. It was also recommended for my late brother-in-law, Larry, but the doctors “poo-pood” it claiming that it wouldn’t have helped him.  I tend to disagree with the doctors, and wish we had tried it on him.

It is medical fact that HBOT enhances blood flow to the brain, reduces inflammation and oxidative stress, and mobilizes stem cells from the bone marrow.  Deficits in all of these have been implicated in the development of autism.

Have any of my readers tried hyperbaric therapy with their children or know of others who have? I would be very interested in getting your feedback about how this has worked for people in your life. So, the symptom improvements you would look for would be better appetite, language, eye contact, better intestinal health, and so on.

Let me know out there what you all are thinking!

Neuroinflammation & Oxidative Stress: The ABC’s of Testing & Treatment

New research is focused on how oxidative stress and inflammation impacts the nervous system, resulting in some of the symptoms of Autism Spectrum Disorders. This lecture reviews research about the mechanisms of oxidative stress, how it may affect the human body, and testing that is currently available to assess it in each patient. Treatment using supplements, herbal and homeopathic medicines will be reviewed.

The Use of Hyperbaric Oxygen Therapy for Children with Autism

Hyperbaric Oxygen Therapy (HBOT) has shown promising results in the treatment of autism.  HBOT involves the breathing of pure oxygen in a hyperbaric chamber – pressurized above one atmosphere absolute (ATA).  Originally utilized to treat a life-threatening condition known as the ‘bends’, in divers, its therapeutic use has expanded to include carbon monoxide poisoning, gangrene, osteomyelitis, and, more recently, autism.

HBOT enhances blood flow to the brain, reduces inflammation and oxidative stress, and mobilizes stem cells from the bone marrow.  Deficits in all of these have been implicated in the development of autism.

A typical treatment protocol for autism consists of breathing pure oxygen for sixty minutes at 1.3 to 1.5 ATA, which corresponds to a depth of ten to seventeen feet of seawater (FSW).

A substantial majority of patients experience benefits with HBOT.   These include improvements in language, eye contact, socialization, appetite and digestion.  It can also reduce the intestinal inflammation associated with bacteria, fungus and parasites.

Lori Lite Focuses on Self Esteem and Stress Reducing for Kids!

January 5, 2010 Atlanta, GA. Children’s author and entrepreneur Lori Lite returns to the ABC’s “Shark Tank” reality series Friday, Jan. 8, marking her first appearance on the show since August 2009. “Shark” real estate mogul Barbara Corcoran offered a sharing interest in Lite’s up-and-coming company Stress Free Kids. This remarkable series of books and are all about helping to reduce children’s stress and anxiety.
Stress Free Kids and Autism Today help those with Autism and Asperger Spectrum Disorder become active participants in managing their own stress, anxiety and anger. Karen Simmons, CEO, Founder of Autism Today is a leader in providing the most efficient and effective information available to help families and professionals living with Autism.
Since that recent Shark Tank episode, Borders stores is now carrying  Lite’s books nationwide, including such titles as “Angry Octopus”, a stress-management book and “Affirmation Weaver”, a self esteem-building book.
“Borders is the first retail chain to give me nationwide placement in their stores. I love that Borders believes in me and my books, which truly do help children live stress-free lives”, Lori says.
A relaxed crowd of children expressed positive affirmations, as Lite read to them from “Affirmation Weaver”, at a recent Borders event in Long Beach, California. “It was thrilling to see a large group of children repeating positive statements,” says Lite.
Borders features this special series from Stress Free Kids http://autismtoday.com/indigooceandreams.html.
For more information visit your favorite Borders locations featuring Stress Free Kids. To arrange an interview with Lori Lite, please contact Rick Lite at (800) 841-4204.
About Autism Today:
Autism Today is dedicated to helping those on the autism spectrum realize their goals and dreams while supporting parents and professionals in the process. Karen Simmons feels that, “helping and supporting parents, professionals and their children to manage stress is one of the best sway we can empower individuals on the autism spectrum to achieve their personal best.”
Karen’s ambition is to eliminate obstacles while enhancing strengths that can be present when dealing with special needs issues by providing the most efficient and effective information access tool available today.  Her vision is to shine light on special needs by empowering individuals on the spectrum to become their personal best. Autism Today’s renowned conference series returns this Spring with the Edmonton Autism Biomedical Conference, join us for three days of education, networking and excitement – www.autismbiomedical.com
Follow Karen Simmons, CEO of Autism Today

“Take-Home Toolkit” for Positive Relationships for those with Autism (Continued)

3.  Communicate for communities sake: Help to carefully bridge relationships between peers and those with autism.  This is an intuitive process, so be careful of boundaries.  Try hooking up with a “peer coach.” Reach into who they truly are and help to pull them out.  Get them to volunteer, sign up for an acting class or try to find others who have something in common.  By building, nourishing and enhancing young relationships with peers, employers, family and community, the fabric of humanity is enhanced.

HOW PARENTS CAN HELP:

After I got Jonny and Stephen in football it was difficult at first because Jonny was not accepted.  He was seen as someone who was different.  At the first parent meeting, Coach Dave said “when the boys are on the field they are mine, when they go home they go back to you parents.  Please respect this rule and the kids will learn respect and discipline.”  I worked with the Coach to help Jonny fit in, of course the coach talked and modeled a lot about acceptance, because he too was in a wheelchair.  He treated everyone the same and expected the best from everyone.  One time Dave, told Jonny to do push ups.  Jonny ran over to me on the sidelines crying because he didn’t want to do push ups.  I told him, at the disapproval of the staring parents around me, to do what the coach said.  This one thing changed Jonny for life! When Jonny began his practice he was running behind all the team players as they ran their laps.  As the year went on, something happened that caused the team to bond and embrace Jonny for who he was as well as his strengths.  He was really a good blocker, because since he always did the same thing over and over again.  The team began running behind Jonny, so that he would be first in line when they ran laps.  By the end of the season, the whole team celebrated Jonny at the final pizza party, giving him a great big “hoorah”!

“Take-Home Toolkit” for Positive Relationships for those with Autism, Continued

…Continued:

2. Enhance empathy: Tune into empathy, not sympathy.  Try to put yourself in their shoes and imagine what they may be thinking or feeling, especially since they have difficulties understanding, expressing and showing emotions which can be confusing.

Try to get a clear understanding of what visual and motor skills our kids have to be able to read.  Pat, my co-author of this chapter is going to hand out overlays so you can feel the difference a color could make for a child on a piece of paper. Most people with autism are extremely sensitive – actually hypersensitive. Color is no exception. By printing papers on toned paper for a school project or whatever can make a huge difference! And different colors can affect different people differently.

Enhancing Empathy can also mean engaging empathy by doing activities together. You can get a real feel for what they like or don’t like and participate in the activities you find most comforting to them. Strangely enough, they may be the most comforting to you as well!

It’s not always important to talk, talk talk all the time and try to get inside their head. Sometimes something as simple as sitting down with some nice colored pencils and markers and scribbling with them at a table in silence can foster a world of closeness. Communication is more than just words (especially for some people with autism).

Another empathetic activity might be going to an empty community hall or large room where you can play music and swirl around together! Be careful of the music. Different types of music affects people differently – sometimes even Classical music can affect someone with autism adversely (I know that may be hard to understand).

Just remember, as much as it may seem to you sometimes that some people with autism don’t always express their feelings, desires, likes and dislikes, it doesn’t mean they don’t have them – they just don’t know how to express them! And above all,  look for the gifts, praise and nurture them within your loved ones.

…to be Continued…

Seeking Creative Website Developer on Autism Spectrum

There is a brand new, special animated series for children, parents and teachers currently being pitched to major television.  They are seeking creative website developer on the autism spectrum that can carry their concept all the way from script to screen.  Please email:  karenss@shaw.ca if you are a person on the spectrum that thinks this is a fit.

“Take-Home Toolkit” for Positive Relationships for those with Autism

1. “Get” the label: We need to get past the label drama by offering a way to help people better understand what’s going on and ultimately support differences, not discriminate against them.  It’s not the label of autism that’s the problem, rather, the fear of the unknown and preconceived notions we associate with the label.  We must understand the challenges facing autism, which are first communication and sensory challenges which result in social skill deficits and behavioral challenges.

For example, because people on the spectrum can be very literal, don’t take what they say personally, as I described in the story about Jonny’s teacher, Mrs. Spaulding. Also, remember to watch out for areas on concern for example, bright lights, loud sounds and possibly uncomfortable clothing as it may cause discomfort leading to poor social and communication skills which affect relationships.  Understand their lack of ability to process and express themselves.  It’s not that they don’t feel; they just have trouble expressing themselves.

When my son was young, I used to get very hurt because he wouldn’t hug me goodbye when he went off to school.  I didn’t think he had feelings or cared about me.  One day right after he learned how to ride his bike he was darting down the street faster than a speeding bullet across a busy road, without even stopping to see if any cars were coming.  He had no fear of anything!  I ran up to him screaming at the top of my lungs “Jonny, what on earth are you doing?  You could have been killed!”  He came over to me with great big tears streaming down his cheeks.  “You hurt my feelings he said” What?  Up until then I never realized he really had feelings, or that he even knew what they were!  Never underestimate what is going on inside their minds and their hearts.  They feel a lot more than we give them credit for.  It’s up to each of us to find out how they express themselves and enjoy the differences.

Not long after that incident, a little boy in the first grade was killed in a tragic accident.  I hadn’t realized that Jonny thought he was very close to Michael, and that Michael was his best friend.  Because Jonny loved video games and wasn’t really in touch with reality he said “I wish I had another life, so I could give it to Michael and bring him back”.  Sometimes relationships to us aren’t necessarily the same to those on the spectrum.  It doesn’t mean we have to fit them into our mold; rather we need to understand that this is okay.

To be continued…

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1 in
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Diagnosed with Autism

Over
100

Autism Diagnosis a Day

Costs
238

Billion per Year

Boys are
4

Times More at Risk