Testimonials from the Kids

11/15/05

Dear Parents and Teachers,

                When I was nine years old I said I hated having autism, because I hated the way people treated me. I wished I had a different disability, so people could understand me. Sometimes it was like living in a daydream. Sometimes people understood me, and sometimes they didn't. Mostly they didn't. People got frustrated and angry when I couldn't remember how to do something. I got upset too. I thought I was stuck in a daydream.

                Now I'm twelve years old, and things are different. I can tell people when I need a break or a fidget toy or sunglasses. I go to a school where teachers understand me, and there aren't any bullies. I go to FOCUS where they understand me, and I have friends to hang out with after school.

                Parents and teachers need to understand kids even when they aren't talking. Try to figure out what we need. Help us to know what we need. Maybe you could talk to big kids, so they can help you with little kids. Thank you for inviting me to your meeting.

Yours truly,

Alex C.

The original inspirational before and after story that Alex feels he has outgrown.

The 5 Worst Assumptions Parents and Teachers Make in Dealing with Autistic Children

(And Children in General) Written by CJ, age 18

1.  If they did something wrong, they know it, period.  This one goes at the top of the list because it's the most dangerous of the five assumptions.  While teachers are easily the most common culprits, parents may occasionally mess up, even if they don't mean to.  This is how it works:  the child is perceived by another same-age person as having done something wrong.  The adult approaches him/her and spells out the punishment.  When he/she responds with, "What did I do?" the answer falls somewhere in the range of "You know exactly what you did," or "Don't try to play dumb now."  He/she is now left wondering what happened and believing that he/she is sentenced for a "crime" never committed.  The truth is, nobody is in a state of mind that allows them to be aware of their actions at every point in time and to process exactly which "punishment" goes with which "crime."  If they ask what they did, by all means spell it out, and then work with the people on both sides to fit the puzzle pieces in place.

2.  Because I am the adult, what I believe happened, happened, and they're just not admitting it.  It's always more or less the same exchange:  the adult says, "Tell me what happened," the child does, then the adult responds with, "That's not what [insert same-age person] said," followed by the child's response of what he/she perceives differently, then the adult responding the same way until, finally, an admission of guilt.  Yes, it's natural that what you see as the correct answer isn't what you'll get, but don't torture them mercilessly just to satisfy your own need to be perfect!  In 5^th grade, this got so bad that, during one of the year's later scenarios, I just admitted any wrongdoings right away to avoid a further meaningless altercation!  Committing this assumption puts words in the child's mouth and distorts his/her point of view on what happened, sometimes causing the wrong party to be found guilty.  If they don't agree with you on what happened, then just let it be.

3.  They just mishear what others say every time.  It sounds like a safe assumption at first, but pay attention to that "every time."  Too often, it becomes a dangerous pattern that leaves the child feeling not only guilty, but taken advantage of.  If you don't think this is harmful, consider this:  In 5^th grade, after one person took unfair advantage of the swings at recess (a big favorite of mine), what was really a muttering of "sneaky" under my breath was somehow heard as "stupid [n-word]" (and she is black) by her and seven other people!  (For how this applies elsewhere, check assumption #5 below.)  At times after that, people in groups would give details of perceived wrongdoings and make sure that what made it all make sense was hidden from me, so that I eventually ended up feeling used.  This all isn't to say that the child doesn't always hear things correctly, but they don't goof every time, either.                                                   

 4.  If I know they won't tell me what I want to hear, why should I even bother?  Okay, so maybe that's a little extreme, but it does illustrate the problem here.  Children with autism have additional difficulty expressing their problems, and if assumption #2, above, becomes a repeated pattern, they get increasingly frustrated when telling their point of view.  Eventually, the adult may not even bother to ask for their point of view, committing the dangerous error of not hearing both sides of the story.  In 5^th grade, (isn't it strange that 5^th grade had all the problems?), about six or seven people in the class managed to misconstrue a complaint I had about somebody's actions into some gross innuendo, and when I figured out where they had misheard, I wasn't even allowed to talk; the punishment fit the crime before any objection from the defendant.  Obviously, it's important to hear both sides of the story, but especially in dealing with autistic children.

5.  The majority is always right.  Obviously, the two examples above show that this one gets proven wrong from time to time.  The reason it's last is because it turns out correct most often, but it's still here because it needs to be taken with a grain of salt.  If the majority was correct all the time, famous people like Copernicus and Galileo would be wrong without even having to test their theories.  Before any judgment, weigh both sides of the story equally and try not to be biased.  Believing the majority should be a last resort only, not a first resort as my experience can attest. 

My name is Alexandra  and I am in my freshman year at Saint Joseph's University.  I know that I would not be where I am today without the help of Donna Swanson, and Focus.  Focus helped me to manage my anxiety and ADD.  Focus also helped me build enough confidence in myself to reach goals like making honor roll and getting into college.

My first visit to Focus was in my junior year of high school.  Before I started going to focus, I had such a negative outlook on life because I was struggling both academically and socially at school. I suffered from anxiety and Attention Deficit Disorder (ADD), and because of this, I was very insecure and had very little self-confidence.  I felt that no matter how hard people tried to help me, no one understood what I was going through and why this was happening to me.  I felt hopeless... If I couldn't figure out what was wrong with me, how could anyone else?

My life changed when I started going to Focus.  I found that the people there were very welcoming, supportive, and compassionate.  I never felt like I was being judged or criticized.  Focus helped me develop enough confidence in myself to succeed in school and apply to colleges.  Once I was able to feel good about myself, I was experiencing success in my life.  The experience of success allowed me to overcome my problems of the past. 

About three years ago I came to a place called Focus Alternative Learning Center. A specialist recommended me to go there because they thought it would help me be more social with me. I was pretty much kicking and screaming, but I was finally forced to go. I figured it would be a place with white walls and some chairs. When I got there it was like a home. The kids were sprawled out about the coaches and they seemed very comfortable there. Every time I came for a while I would just sit still tightened up and not say a word. I thought I would never come out of my shell. 

After a while I started coming around and realized I could trust the people. I was no longer forced to come and I actually voluntarily went. I was feeling a lot better about myself, people even noticed at school. It was like my whole personality changed.  This is a very rare place where they actually care about the kids and it's like no place I have ever been before. I am sure I would still be in my shell today if it weren't for Focus.  

I like FOCUS because it made me into the person that I am today.  If it was not for FOCUS I would  have dropped out of school.  FOCUS has helped me get friends and has helped me stay in school.  This up coming summer I will be working for FOCUS.  I am happy for that because FOCUS has changed my life forever.  Thank you FOCUS from the bottom of my heart.  

I have a mild form of Autism called Asperger's syndrome.  This special type of learning disability brings with it many problems such as hyperactivity, anxiety that can cripple me of even simple tasks.  There is even a socially anxious tendency that in the past made it unable for me to interact with my peers. 

Focus is a program that uses a concept of "milieu" therapy.  Our program acts as a social incubator and works on our individual needs.  For me I had a problem understanding the concept of "no" growing up.  With the anxieties I had in school certain things acted as a "comfort item" for me. 

Focus found a way to use their simple rules and philosophy to surround me in a comfort zone.  They explained the rules to me, used my strengths to build my confidence in myself.  Growing up I was an outcast of society.  Now I am a leader in my community. All thanks to Focus.