My Children Made me This Way

I have no idea where to begin. None what so ever. I have tons and tons of information. Maybe too much of it, I don’t know. What I do know is that I need to start someplace and I haven’t a clue where that place is.

I think for one thing for us, or me at least, even what is likely behaviors that are part of F’s Aspergers are just part of her personality to me. They are things that have been part of her since..well..forever..and so I have learned to cope with them. Learned to compensate and handle. Maybe F would have been diagnosed earlier if I hadn’t used the idea that all kids are diffrent and she was just my Wild One.  I think I am worried that because I have learned to handle her behaviors for the most part inside our family that maybe those things are actually hindering her. Maybe I haven’t given her the tools to cope properly. And in all actuality I don’t think we have been coping well. I think we have just been getting by.

We started her on Concerta last week for the ADHD, and the change has been immediate. A huge diffrence in her ablity to focus and pay attention in class. So much so that she missed her dose yesterday and her teacher wrote a note asking if she had. My mother however says F has lost her sparkle. I think my mother has lost her mind. I see a little girl who is far more focused and calm. I think she might understand it more if she saw how F struggles all the time, something she is not privy too. Living near someone, taking them for overnights is not living with, and unless you are living with it I don’t think you can see the entire picture. Their are a lot of things that no one else see’s.

F is high functioning and that makes me wonder how hard it is going to be to get her help once I know what help I need to get her. Everyone focuses on the more profound cases. And I can understand that, those kids are so hard to reach. Those families need so much support. Add to that that here I am at the begining of all this with a 7 year old. Almost all the focus for beinging treatment is on toddlers. Under fives. Yet another reason to feel like I screwed up. And anothre reason for me to be angery. I have been fighting for this for her since she was 3. Four years. Time wasted? Opportunities lost for her? Will it be harder to teach her coping skill and thearapies because she has already started the foundations, even if they are wrong ones. So many things to relearn. It’s about reteaching her to think, to learn.

And finding where to start. I feel like I am looking for the start of a thread in a huge tangled ball. 101 possablities and nothing is familiar. Nothing at all.

 Today is, as I am sure you have likely gathered from the title of my posting, is World Autism Awareness Day. Aspergers Disorder as you may or may not be aware is in the Autism spectrum. There is a lot about Autism that people don’t know. Most people are familar with the classic images of what an Autistic child is. But there are other forms and manifestations of the disease. There are millions of children and adults living with it and as many variations of symptoms. So, I am going to share some information as well as some links because knowledge is a powerful thing.

  What is World Autism Day? How did it come about?

“On December 18, 2007, the United Nations General Assembly adopted resolution 62/139, tabled by the State of Qatar, which declares April 2 as World Autism Awareness Day (WAAD) in perpetuity. Her Highness Sheikha Mozah Bint Nasser Al-Missned, Consort of His Highness Sheikh Hamad Bin Khalifa Al-Thani, the Emir of the State of Qatar, supported the campaign for a World Autism Awareness Day through the current 62nd UN General Assembly Session, garnering consensus support from all United Nations Member States.

This UN resolution is one of only three official disease-specific United Nations Days and will bring the world’s attention to autism, a pervasive disorder that affects tens of millions. The World Autism Awareness Day resolution encourages all Member States to take measures to raise awareness about autism throughout society and to encourage early diagnosis and early intervention. It further expresses deep concern at the prevalence and high rate of autism in children in all regions of the world and the consequent developmental challenges.

World Autism Awareness Day shines a bright light on autism as a growing global health crisis. WAAD activities help to increase and develop world knowledge of the autism epidemic and  impart information regarding the importance of early diagnosis and early intervention. Additionally, WAAD celebrates the unique talents and skills of persons with autism and is a day when individuals with autism are warmly welcomed and embraced in community events around the globe.

By bringing together autism organizations all around the world, we will give a voice to the millions of individuals worldwide who are undiagnosed, misunderstood and looking for help. Please join us in our effort to inspire compassion, inclusion and hope. “ 

~World Autism Awareness Day.ORG

 What is is Autism?

Autism is a complex neurobiological disorder that typically lasts throughout a person’s lifetime. It is part of a group of disorders known as autism spectrum disorders (ASD). Today, 1 in 150 individuals is diagnosed with autism, making it more common than pediatric cancer, diabetes, and AIDS combined. It occurs in all racial, ethnic, and social groups and is four times more likely to strike boys than girls. Autism impairs a person’s ability to communicate and relate to others. It is also associated with rigid routines and repetitive behaviors, such as obsessively arranging objects or following very specific routines. Symptoms can range from very mild to quite severe.

~Autism Speaks: What is Autism, an Overview

Autism Speaks

AutismSpot.com

Autism research Institute

Autism Society of America

First Signs

Judevine

WorldAutismDay.org

 I will likely be posting a lot about this subject this month as April is Autism awareness month as well. Hmm..maybe I need two blogs.

We got the official Diagnosis for F on Tuesday. Inattentive and Hyperactive ADHD as well as Aspergers Syndrome. We now start investigating learning disabilities as well. No, it not as if it’s cancer, or life threatening. Some people have far worse to handle. But it’s still my Monster, and it still kills me. This is what I wrote in the hour car ride home while my husband drove and F sang along with Lori Berkner in the backseat:

I can feel myself sinking. It’s been slow to finally get here. 4 years. But it’s been quick, so fast too. Or maybe I have always been sat on the brink,  holding my breath, waiting for this. Right there on the edge of it, hovering. Waiting to slip into it. It seems like a slow drift down. Quiet when the words first make your ears. Silent. At least in those first few moments. Before the whispers begin to edge in and fill your hear with their soft white noise when you should be listening to the Doctor. Doubts. What ifs. Would have, could have, should have.

There are so many unknowns and so many possibilities unvisited. They sit there, echoing in back of my mind. Shadows that press like velvet against me and smother rather than soothe. They always tell you that it’s nothing you did. Or didn’t do. Genetics. Biology. Generations of combination’s breeding true. Chemistry. It happens. But that does’t mean I don’t think;

• I smoked. Was that it?
• All I managed to keep down was Pepsi and Chocolate ice cream. Could that have done it?
• I lost weight. Would that do it?
• I worked for the Vet still then. I know I jabbed myself with a Feluek vaccination. Would that do it?
• What about the fall down the stairs that fractured my ankle? The X-ray?
• She had RSV at 3 months. She stopped breathing, and we had to call 911. Was it that?

They say no, it’s not external. It’s something she came with. It’s who F is. The year she was born I had other concerns for her and her siblings. I had my hand on my pregnant belly, on her, on the morning of 9/11 2001. There was a tiny kick, a gentle roll when my heart stopped in the moments as the second tower fell. I stood under an airplane less sky, for the first time in my life, in Upstate NY and I watched the wide and cloudless blue and I wanted to keep her safe give her that peace. Protect her form the world. that was the big scary world. This. This is the real, close to home world. This is what can really hurt her. So how do I protect her from this. How do I help her on this path, when it’s all new to me as well.

I am still finding my way. I will get there, but sometimes I don’t find the easiest or shortest or even the best way and I don’t want to do that to her. I am so clumsy sometimes, just don’t let me trip now.