Asperger’s Syndrome

In my Father’s Image

jamieg36 Comments

fathers and sons

Recently, my son became very ill, and as the doctors asked me about our family health history, I found myself becoming angry again at my ex-husband.  The anger wasn’t because he deserted me and his children (though I find that seeping back in once in a while); the anger was due to how he left us. He made it impossible for me to ever find out if the symptoms my son is having could be related back to his family history; therefore, there is this big unknown part of my children’s history that I would like to access, so I can help them be healthy for themselves and for their future children.

I took this photo of my son and husband (at the time) right after my father’s funeral.  My husband said that my losing my father reminded him of how quickly time passes and the importance of cherishing every precious moment we have with our children. The portrait symbolized to me the relationship between a parent and their child and how important it is, as parents, to guide our children to the future that is waiting for them.  I never thought that my own husband would disregard the gift’s God has bestowed upon us.  I no longer try to understand what made my husband do the things he did, as it is out of my control and is time wasted. Yet, inexcusably I still witness daily the internal pain and damage he left behind. I always thought that maybe he was too damaged from his own childhood to ever be a parent, but three years after deserting his own children, he had another one.

It may seem cruel, but I sometimes view my ex as created in Hitler’s (interesting enough, he liked his employees to call him that) image because when our marriage became the darkest is when he could not handle his youngest son (in this photo) being different from other children.  I’ve mentioned in my blog before that my son has Asperger’s Syndrome, and my ex-husband had no patience or empathy for the symptoms that developed from my son’s diagnosis. I almost think that he kept having children until he could create the perfect specimen of himself.  My heart aches for his new child that he had with his new wife, and I pray for the innocent boy’s safety every day.

This photo has been hidden in the back of my closet for years in fear of it bringing back the pain of the past for my children. However, this week as I have been filling out medical forms for specialists for my beautiful, kind-hearted son, I looked back at this portrait and realize that it doesn’t have to represent the father that walked away, but it reminds me of the characteristics my son shares with his maternal grandfather that I sadly lost that Thanksgiving week in 2000. My son grew up not having the guidance of either a father or a grandfather, but I have kept my father’s image alive within my son, by sharing his stories, his morals, his ethics, his love, and so on.  As I look into my son’s eyes, the eyes that trust that I will find him the best care and answers this week, I see my father’s soul looking back at me.  My son may have been born from a man who has no soul, but that doesn’t mean that’s how my son’s story ends.

My son has a heart of gold and carries his grandfather Jim’s heart and soul with him everywhere (that is what I see in this portrait now), and as long as I bring him up with wonderful people surrounding him that also share those similar ethics, morals, and love, my child will take that into his future and it will continue to touch the ones fortunate enough to come into his life. I will never be convinced that blood defines a family, but instead family is defined by the incredible people who lift us up and encourage us to live each day being better than we were the day before.

Remember Your Shadow is a Reflection of Your Shining Light

jamieg3Leave a comment

shadows

I’m just toying with my artistic side today.  I was studying when I looked up and saw this beautiful shadow looking back at me.  It reminded me of my son and the shadows that follow him.  I wanted him to know that his shadows are only there because of the bright, shining light that radiates from his beautiful soul.  His favorite artist is Lady Gaga; therefore, I wanted to reflect her words the best way I could.  I can only hope for my son that he can one day live in a world that respects individuality and one where he can walk down the street and feel free to be himself without being afraid to have bullies and haters lurking in the shadows he still fears. We all have those shadows around the corner, but today I choose to be a light for those who may still be afraid to turn theirs on.

See the whole person, not the label

jamieg3Leave a comment

Dylan Source

This past week, my children and I presented research on Asperger’s Syndrome at the university that I attend.  I also presented last year, so this wasn’t a new experience for me, but it was for my children.  They are only 20 and 17.  My daughter attends college with me, but my son is a high school student and consequently happens to have a diagnosis of Asperger’s Syndrome.

Our journey navigating the school system, and just society in general, has been a long, difficult road; therefore, for him to stand up in front of all these people (and to step out of his comfort zone), and not only talk on the subject, but to share his deepest thoughts, was the most amazing, brave thing I have ever witnessed.  When I grow up, I want to be just like my kids. They are determined to bring awareness to the subject, so that they can hopefully decrease stigmatism.

At the end of our presentation, my son stood up in front of the room and read the following poem that he wrote.  There wasn’t a dry eye in the room when he finished.   His honesty as he read his words was inspirational.  I asked him today if I could share his words on my blog and he said of course.  For years, educators have told me that I had unrealistic expectations for my son.  Thank goodness I didn’t listen to them.  Never let others tell you that you can’t do anything.  Only we know what we are truly capable of.

See the whole person, not the label

What is Asperger’s Syndrome?
Mental Illness?  I think not.
How does someone get Asperger’s Syndrome?
A gift given to children through birth or heredity.

Mental Illness.  I think not.
I am different; I am socially awkward.
A gift given to children through birth or heredity.
I don’t have a clue.

I am different; I am socially awkward.
I have significantly increased intelligence.
I don’t have a clue.
I have sporadic, hyperactive behavior.

I have significantly increased intelligence.

I am socially awkward.

I have sporadic, hyperactive behavior.

I grasp academics slower than others.

I am socially awkward.

I do not like being labeled.

I grasp academics slower than others.

I feel like another product on a conveyor belt.

I do not like being labeled.

Others see me as indistinguishable from other people with the same label.

I feel like another product on a conveyor belt.

Quit putting me in a category.

Others see me as indistinguishable from  other people with the same label.

I am a loyal and generous person.

Quit putting me in a category.

I am fun, outgoing, and energetic.

I am a loyal and generous person.

In the future, I would not want people to know I have Asperger’s Syndrome.

I am fun, outgoing, and energetic.

Asperger’s Syndrome does not define me.

In the future, I would not want people to know I have Asperger’s Syndrome.

The early years of my life, they held me back.

Asperger’s Syndrome does not define me.

Over the years, I learned social cues, behaviors, rules, respect….things that come easier to normal children

The early years of my life, they held me back.

Teachers put no effort into providing the education I deserve.

Over the years, I learned social cues, behaviors, rules, respect….things that come easier to normal children

Teachers put me in a box and never try to approach my learning in a different way.

Teachers put no effort into providing the education I deserve.

I feel judged. I feel isolated. I feel helpless.

Teachers put me in a box and never try to approach my learning in a different way.

My teacher’s motto “I can’t drop everything to focus on your problem”

I feel judged. I feel isolated. I feel helpless.

Don’t judge a book by its cover.

My teacher’s motto “I can’t drop everything to focus on your problem”

Ignore the label and treat me like a human being; a human being who is effected by your judgment.

Don’t judge a book by its cover.
How does someone get Asperger’s Syndrome?
Ignore the label and treat me like a human being; a human being who is effected by your judgment.
What is Asperger’s Syndrome?

–          By D. G. @2014

Is selling the story more important than the people it hurts?

jamieg3Leave a comment

Blog SH

Does the news need to blame someone so much that they don’t care if they stigmatize a whole group of people who have done nothing wrong? Tonight I received a text from a colleague asking me if I heard the Sandy Hook killer had Asperger’s Syndrome? I thought I was going to be ill. I really thought the news had let go of that. I remember when the shooting happened, and a diner owner had reported that to the news. He said the mom had told him once (years earlier) that her son was being tested for Asperger’s Syndrome. TESTED!!! Tested does not equal a diagnosis, and even if it did, it does not mean that was the cause for the shooting.

The shooters own brother said he had been diagnosed with a personality disorder. That could mean so many things, but again did not mean Asperger’s Syndrome. And just so we are clear, when the brother was interviewed by cnsnews.com, he was interviewed under anonymity because he was under orders from the investigators not to disclose information to the media. All of the sources I have searched up weren’t credible enough to say for sure or even to say “could be” or “might be” or “we have an inkling” that the shooter had Asperger’s Syndrome. Where were the interviews with the shooter’s therapists and doctors? You know, the ones who were actually treating him.

Having a child with Asperger’s Syndrome, I know first hand the stigma he faces in our world without having the national news pointing a finger at him. I thought our society had out grown away from the mentality of the Salem Witch trials, but I guess I figured wrong. When a tragedy happens, everyone wants to point fingers and come up with an easy solution to the problem, even if that solution could ostracize a whole group of citizens unfairly. As long as it doesn’t affect us, why not, right? Wrong! It’s time our society grows up and realizes that not everything can be wrapped up nicely in 30 – 60 minutes like a television show. As a society we need to get off our social media and start educating ourselves on the world around us.

I am not saying that the killer wasn’t mentally ill, but that’s all that needed to be reported. Putting a name to his illness without 100 percent proof is unconscionable. Yet, tonight NBC news did it again. My colleague pointed out that the information was coming from the shooter’s father and that this time it was a major news show that was airing it, so she trusted the validity. It made me wonder too, so I went on to watch the interview. The only problem when I watched the interview is that the interview wasn’t with the father of the shooter. It was with a reporter who had interviewed the father. In other words, it was one reporter interviewing another reporter on his interpretation of the father’s words. Might I point out that the shooter’s parents were divorced, and it was the mother who had been seeking out the mental health help for her son, so now we have a reporter interviewing another reporter on his interpretation of his interview with the father who was actually giving his second hand knowledge of what the mother had learned year’s earlier. Have any of you played the telephone game as kids? How well did that information get passed around the room? Well, these are adults playing that game, yet it has major affects on a whole group of citizens from around the world.

Instead of pointing fingers at individuals with Asperger’s Syndrome and causing them to be feared like the witches were in Salem, or the Jewish people and the Japanese were during World War II, or even how the Muslims have been since 911. We are so quick to blame a whole group of people for something one or a few might have caused. It is soooo much easier and quicker. Instead we need to educate ourselves about mental health issues and find ways to help each other, instead of judging each other. The time and energy it takes to point fingers and gossip, people could put that towards lifting up their fellow citizens.

I read Frankenstein recently to a group of my college ESL students. I had never read Frankenstein before, and it brought me to tears. The monster wasn’t evil and ugly, society made him evil and ugly. Even his own master turned against him because of how ugly he thought he was. He didn’t bother to get to know him and love him, instead he banished him and sent him out in the cold to die. We do that to people everyday and then people cry out “what’s wrong with the world”? We all need to take a look in our own mirrors, including myself. Not one of us is perfect, and if we quit striving to be perfect and accept each other for who we are, we might be able to walk out of our glass houses and get to know some truly amazing people that we have been building up walls to protect ourselves from.

My husband did not want a child who was different and walked away and started a new life, pretending the first one never existed. He tossed his kids out, just like Frankenstein did his creation. No one ostracizes him! When I searched for positive, male role models in my community for my son, no one stuck with it because it’s not easy to work with a child with special needs, it’s easier to be a big brother to a child who is “normal”, or to go to a foreign country for one week a year to volunteer. Those make better Facebook photos. I never thought I would have to be afraid to say my son has Asperger’s Syndrome, but now due to sensationalized reporting, my son and a whole group of innocent people, have been stigmatized even further. I can only pray that awareness and education will one day reach others in society and that we stop hating a community for what one person did.

Asperger’s Syndrome does not define my child

Image jamieg32 Comments

Asperger's Syndrome does not define my child

If people only see Asperger’s Syndrome when they see my son, then they have denied themselves the opportunity of knowing the most loving, creative, intelligent, silly, loyal, compassionate, ( the list is endless) person I know. These characteristics define him, not a diagnosis. If only everyone had the opportunity to see the world through his eyes, their lives would be richer for it. He is my heart!

I know Asperger’s????

jamieg3Leave a comment

Chef Dylan blog
“I know Asperger’s, my friend has a child with Asperger’s Syndrome” are usually the words I hear when I tell my friends my son was diagnosed with Asperger’s Syndrome six years ago. Other words I hear are from friends who have a child with the same diagnosis, and who believe since our kids have the same diagnosis that our kids are the same person, will be “are you sure your son has Asperger’s Syndrome, my child doesn’t do that.” This can be very frustrating for me when my passion is to bring awareness to the subject, but a wise person once told me “at least they are talking about it.”
Does having a child with Asperger’s Syndrome make me an expert on the subject? According to my son, he isn’t even an expert on the subject. All it means is that I am an expert on my son who happens to have Asperger’s Syndrome, and even then, I am a secondary authority because he is the primary expert regarding himself.
What I can say is that according to the Center for Disease Control, Asperger’s Syndrome (AS) can be identified by the onset of non-verbal behaviors, and it distinguishes itself by an individual’s lack of eye contact, lack of facial expression, and peculiar body postures. The diagnosis itself is based on a list of symptoms (listed in the previous Diagnostic and Statistical Manual of Mental Disorders (DSM IV-TR): impairment in social interaction, repetitive and restrictive stereotyped patterns of behavior, activities, and interests, significant social and occupational impairments, and delays in language; these impairments can lead to difficulties in making friends, having an awareness of non-verbal social cues, poor motor skills, narrow areas of interest, inflexibility in regards to changes in routine, and an inability to understand another person’s perspective. Other issues can be having a lack of direction, problems with loud noises and with large crowds.
The list can go on even more, so what if I had ten, male 17-year olds with Asperger’s Syndrome stand next to each other in a room – I highly doubt one of them would be the same. That would be like hanging ten of Van Gogh’s masterpieces next to each other on the wall and saying they were the same. They may be from the Post-impressionist era, they may all be from the same artist, and they may have similarities; but in the end, they will all touch us in a completely different way; therefore, I also see my son as a masterpiece and would never begin to lump him in with another person, nor would I want another mother to feel she needed to lump her child in with mine.
Instead of pulling apart a person with Asperger’s Syndrome to analyze what may be wrong with them, I wish more people would stop and look at everything that is amazing about them. Once we lift our children up and focus on their strengths, only then will they have the chance to soar and have the incredible life they were destined for.
For example, two years ago, my son decided he wanted to be a chef. This may not seem that unusual, but in his world it is. He doesn’t especially like food, or rather the taste of food. Since he was little, his taste buds were on sensory overload. His pediatrician had a great analogy; food is to his taste buds as extremely loud sounds are to eardrums. This has made it very hard for him to enjoy food or rather a wide selection of food; he tends to keep his selections to pork, chicken, fruits, and so on. He does not like if condiments are added to his food; a little ketchup to him is like pouring hot sauce on someone else’s tongue.
Despite his food issues, he is fascinated with cooking and loves to create new dishes. When he talks about culinary school, I always ask how he would get through it since he doesn’t like to taste his own creations. He quickly states, “That’s what taste testers are for.” To prove his culinary skills to me, he told me he was going to a friend’s house to create a dinner designed around my favorites. Not wanting to ever stand in his way, I agreed to come to his special dinner that night. When my daughter and I arrived, anticipating a delicacy of my favorite foods, I was not ready for what I saw before me.
At first it wasn’t that shocking, he had made a beautiful raspberry vinaigrette salad, he then presented us with bread sticks with grape jelly, but next to those foods was something odd. I couldn’t really explain it. It looked like a cross between eggplant and a giant mushroom. I smiled and said it all look delicious, but may I ask what the main course is. He was slightly irritated, and he asked me if I noticed my “favorites” theme. I said I wasn’t quite sure and maybe he could help me; after an eye roll, he gave in. He said he designed the meal after my favorite color: purple. What? A meal based on the color purple? I was in shock and not ready for his next statement. He said, “I made you purple chicken! I marinated the chicken in your favorite drink; diet Pepsi with purple food coloring. I was speechless as I saw my daughter trying to sneak out of the room. Not on my watch. We were in this together.
To our surprise, he had cooked the chicken perfectly and it tasted delicious, even though we had to close our eyes before we bit into it. He also surprised me with diet Pepsi with purple food coloring as my drink. We only learned about the purple food coloring when we saw our purple tongue and lips in the mirror afterwards. He finished the night off with a brownie surprise with a delicious purple marshmallow topping.
Having a son with Asperger’s Syndrome has taught me so much, but primarily that I may never understand what is going on in his head. What I do know is that whatever he is creating in his imagination is spectacular and the days he chooses to share those thoughts are among the greatest days I have experienced. My hope with my blog is not to lecture to anyone about Asperger’s Syndrome, but instead to enlighten others on how fantastic it is to have someone with Asperger’s Syndrome in one’s life. I cannot ever judge a book by its cover, it’s better to leave judgment at the door, and open the book and enjoy every surprise it has waiting.
With my son, life is never dull and always interesting, and I count my blessings everyday that he was born. Getting glimpses of life through his eyes is glorious, and my only wish is that others would learn to set down their critical eyeglasses and pick up a set that helps them see an entirely different perspective. Enlightenment is the entrance to a new, diverse world filled with great gifts beyond our own expectations.