Apr 18, 2011

Autism Now: Robert MacNeil Shares Grandson Nick's Story

Check this out! It's a wonderful piece about autism and how it affects Robert MacNeil's grandson Nick. Just click on the link below!

Robert MacNeil Shares Grandson Nick's Story

This is TOTALLY worth the time to watch.

Apr 12, 2011

The Misunderstood Child

I am the child that looks healthy and fine.
I was born with ten fingers and toes.
But something is different, somewhere in my mind,
And what it is, nobody knows.

I am the child that struggles in school,
Though they say that I'm perfectly smart.
They tell me I'm lazy -- can learn if I try --
But I don't seem to know where to start.

I am the child that won't wear the clothes
Which hurt me or bother my feet.
I dread sudden noises, can't handle most smells,
And tastes -- there are few foods I'll eat.

I am the child that can't catch the ball
And runs with an awkward gait.
I am the one chosen last on the team
And I cringe as I stand there and wait.

I am the child with whom no one will play --
The one that gets bullied and teased.
I try to fit in and I want to be liked,
But nothing I do seems to please.

I am the child that tantrums and freaks
Over things that seem petty and trite.
You'll never know how I panic inside,
When I'm lost in my anger and fright.

I am the child that fidgets and squirms
Though I'm told to sit still and be good.
Do you think that I choose to be out of control?
Don't you know that I would if I could?

I am the child with the broken heart
Though I act like I don't really care.
Perhaps there's a reason God made me this way --
Some message he sent me to share.

For I am the child that needs to be loved
And accepted and valued too.
I am the child that is misunderstood.
I am different - but look just like you.

Apr 9, 2011

Our Son Kristofer

Autism affects each family differently. For us it's just a way of life. I expect the same things from Kristofer as I do the others. I make only small exceptions or make small modifications for him but when it comes to behavior he has to tote the line so to speak. I understand that the spectrum is so wide that it affects each individual differently. Many autistic children and adults are not able to speak while some with the use of computers are able to speak. Some have other issues they contend with such a aggression, seizures, over the top sensory disorder issues and other things.
Our son is able to communicate just like any other person...thankfully! He is a remarkable child, loves to build with legos, robots and dinosaurs are his favorite things and he is just now getting into drawing and art. He for all purposes seems like a typical child who is a little shy. But if you sped more time with him you will notice the pacing, rocking, hand flapping (occasionally), lack of eye contacted (almost immediately), does not initiate play with other children (again occasionally he will) and other typical autistic characteristics. We are blessed that he is not aggressive. Some autistic children are and it is usually not out of meanness but it is how they respond to certain stimuli or situations.
I share these things because there is a popular organization that would like for people to fear, pity and think of autistic children/adults as less than human. That organization is Autism Speaks and with good reason Autism Speaks does NOT SPEAK for us! Here are some reasons - from Autistic Self-Advocacy Network that my friend Angela DeRossett shared in a note on Facebook, Angela is also the writer of Homeschooling the Chaotic Family:

"1. Autism Speaks talks about us without us. Not a single Autistic person is on Autism Speaks' Board of Directors or in their leadership. Autism Speaks is one of an increasingly few number of major disability advocacy organizations that refuse to include any individual with the disability they purport to serve on their board of directors or at any point in their leadership and decision-making processes. In large part due to Autism Speaks’ public relations strategy of presenting Autistic people as silent burdens on society rather than human beings with thoughts, feelings and opinions.

2. They use fear and stigma to try and raise money off the backs of our people. Autism Speaks uses damaging and offensive fund raising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum. Autism Speaks' advertising claims that Autistic people are stolen from our own bodies. Its television Public Service Announcements compare having a child on the autism spectrum to having a child caught in a fatal car accident or struck by lightning. In fact, the idea of autism as a fate worse than death is a frequent theme in their fund raising and awareness efforts, going back to their “Autism Every Day” film in 2005. Indeed, throughout Autism Speaks’ fund raising is a consistent and unfortunate theme of fear, pity and prejudice, presenting Autistic adults and children not as full human beings but as burdens on society that must be eliminated as soon as possible.

3. Very little money donated to Autism Speaks goes toward helping Autistic people and families: According to their 2008 annual report, only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services. Given the huge sums of money Autism Speaks raises from local communities as compared to the minuscule sums it gives back, it is not an exaggeration to say that Autism Speaks is a tremendous drain on the ability of communities to fund autism service-provision and education initiatives Furthermore, while the bulk of Autism Speaks’ budget (65%) goes toward genetic and biomedical research, only a small minority of Autism Speaks’ research budget goes towards research oriented around improving services, supports, treatments and educational methodologies, with most funding going towards basic research oriented around causation and genetic research, including the prospect of prenatal testing. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world, with annual salaries as high as $600,000 a year."

Now here's the deal...first off my son is fully a human with feelings that get hurt very easily. Thankfully he doesn't hold a grudge for long and easily forgives but he doesn't forget who hurts him. He was not stolen from us or his own body! He does not have a missing link either. My son, our son, is perfectly whole! He learns differently, sees things differently, does things differently...WHAT IS WRONG WITH THAT??? He is NOT retarded or have brain damage! He doesn't need to be cured! I love him the way he is. Do I wish the things he struggles with weren't so difficult for him? YES! But I would say the same thing about my other three children who have their own struggles. We all have things we struggle with! Even as adults if we would just fess up to them!
Will I say I wish he was a typical child or what society says is a "normal" child? NO! If I wished away autism out of his life he would not be the child I love. God makes all things perfect!

"You alone created my inner being. You knitted me together inside my mother. I will give thanks to you because I have been so amazingly and miraculously made. Your works are miraculous, and my soul is fully aware of this. My bones were not hidden from you when I was being made in secret, when I was being skillfully woven in an underground workshop. Your eyes saw me when I was only a fetus. Every day of my life was recorded in your book before one of them had taken place." (Psa 139:13 - 16, GW)

I believe our son was created by God and was NOT an accident what so ever! I am not looking for a cure what I would like to see is more research done on therapies that help children and adults to reach their full potential. I can not say that I believe that immunizations caused his autism. Do I feel that there may be a link, it's possible but I really do not know nor at this time do I care. Ok some of you are going to ask why I do not care about this...honestly I don't have time to. Oh I wonder but there is NOTHING I can do about it now. I have 15 nieces and nephews and 4 children of my own and out of those 19 children only 1 is autistic! They all had their immunizations at the recommended times and yet only our son Kristofer is autistic. So are the immunizations the reason he is autistic...I don't think so.
I do not find autism as a curse. Yes it has changed our lives for the BETTER! Yes there are times it is stressful especially when he was under 5 and we were still struggling to find out what was the issues. Which is another post all in itself and you can read about it here and here. I would never change Kristofer in any way I would however like to change how people think of autism and how they think about my son!

True Life- "I have Autism"

I do not watch MTV, mainly because we do not have cable or satellite but a friend posted this link on Facebook. I found it very moving. This episode is about 3 teens who all have autism and what life challenges they face. It is 45 mins long but well worth the watch!


Apr 6, 2011

Best movie out there! Read the book or check out the movie! The movie truly gave me insight into our life with Kristofer and with other children we know. Dr. Grandin Temple is an amazing woman who is a Professor at Colorado State where she is a colleague of my brother-n-law Dr. Eugene Kelly. She has written a variety of books and is an advocate for autism. It is difficult to even gain access to her or anywhere she speaks. Check out more about her HERE

Apr 4, 2011

What is Autism

Facts About ASDs

Autism spectrum disorders (ASDs) are a group of developmental disabilities that can cause significant social, communication and behavioral challenges. People with ASDs handle information in their brain differently than other people.

ASDs are “spectrum disorders.” That means ASDs affect each person in different ways, and can range from very mild to severe. People with ASDs share some similar symptoms, such as problems with social interaction. But there are differences in when the symptoms start, how severe they are, and the exact nature of the symptoms.

There are three different types of ASDs:

  • Autistic Disorder (also called “classic” autism)
    This is what most people think of when hearing the word “autism.” People with autistic disorder usually have significant language delays, social and communication challenges, and unusual behaviors and interests. Many people with autistic disorder also have intellectual disability.
  • Asperger Syndrome
    People with Asperger syndrome usually have some milder symptoms of autistic disorder. They might have social challenges and unusual behaviors and interests. However, they typically do not have problems with language or intellectual disability.
  • Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS; also called “atypical autism”)
    People who meet some of the criteria for autistic disorder or Asperger syndrome, but not all, may be diagnosed with PDD-NOS. People with PDD-NOS usually have fewer and milder symptoms than those with autistic disorder. The symptoms might cause only social and communication challenges.

Signs and Symptoms

ASDs begin before the age of 3 and last throughout a person's life, although symptoms may improve over time. Some children with an ASD show hints of future problems within the first few months of life. In others, symptoms might not show up until 24 months or later. Some children with an ASD seem to develop normally until around 18 to 24 months of age and then they stop gaining new skills, or they lose the skills they once had.

A person with an ASD might:

  • Not respond to their name by 12 months
  • Not point at objects to show interest (point at an airplane flying over) by 14 months
  • Not play "pretend" games (pretend to "feed" a doll) by 18 months
  • Avoid eye contact and want to be alone
  • Have trouble understanding other people's feelings or talking about their own feelings
  • Have delayed speech and language skills
  • Repeat words or phrases over and over (echolalia)
  • Give unrelated answers to questions
  • Get upset by minor changes
  • Have obsessive interests
  • Flap their hands, rock their body, or spin in circles
  • Have unusual reactions to the way things sound, smell, taste, look, or feel

All of this information is from The CDC. You can also find out even more info about diagnosis, therapies and other topics by visiting the CDC site on ASD.

Apr 3, 2011

Wretches & Jabberers

A few days ago a friend of mine posted a link to Wretches & Jabbers. I had no idea what it was about to be honest. I knew it had something to do with autism but had never heard of it. It is actually a movie about the lives of Tracy and Larry. I am hoping to get to see the movie. If you would like to see the trailer or learn more about this movie that will be out this month in AMC theaters check them out here. Both Tracy and Larry are autistic. They never had a chance to experience all the therapy advantages that our Kristofer has had. I am SO VERY THANKFUL that he was born in 2002 than 20 years ago or even more! They both write their own blogs and I have to say reading them has been very insightful and interesting! Just click their name and I have linked it to their blogs... Tracy or Larry

Apr 1, 2011

April is Autism Awareness Month

If you have read this blog for any length of time you know that our Kristofer is autistic. He doesn't fit most of the "typical" symptoms list and there for I will NOT share those typical symptoms. At least not right now. I will sometime during the month list the typical list that advocates like to stress but Autism is a SPECTRUM disorder. Just like a rainbow there are varying colors of autism so to speak, each children/adult is different, each with his/her own special capabilities or stepping stones they deal with daily.
I hope to post something different every day for the full month. I hope to bring awareness and acceptance. Our son is not dumb, retarded or useless. He IS smart, happy, creative, energetic, loving and affectionate. He has friends and although he learns differently and doesn't always respond to his name being called he does HEAR your comments when you stand behind us in line at Wal Mart and he does notice your stares when he is having a little difficulty getting out what he wants to say. He doesn't need your sympathy but he does deserve your compassion and understanding!
His name is Kristofer and he is autistic and I do NOT want to change him! I love him for who he is and he is a blessing from God!