All You Need is Love...

There is a song with the lyrics All you need is love...love is all you need. While I do not dispute- you need love I really believe it is not ALL you need. You need compassion, understanding, God, Acceptance, tolerance and most of all- a sense of humor.
Over the past few years Kevin and I have learned that with all of these combined you can survive even life's toughest times. We did not learn this from friends, family or people we work with. We learned this lesson, and still learn every day from our ten year old son BEN.
Ben, our first born came into this world in 2001 and besides his refusal to sleep, was a average newborn. He then grew into your typically developing baby and then a toddler who was progressing along by the books. As Ben grew, so did his language and it continued to grow and grow and grow and at the age of 2 when Ben was speaking in complete sentences, amazing those around him, we had our first rumblings that something that was "off" and after years of rumblings both quite and loud. We heard a very loud BANG!!!
That bang happened in 2008. It was a combination of coming to the realization this could no longer be passed off as "he's just a boy" behavior and he was having a very rough year in second grade. The friends who had stuck by him were tiring of Ben "smothering" behavior and Ben was beginning to sense things were different. Ben's life began to show signs of stress and his school work was suffering. So, after months and even years of a nagging parental instinct, after years of research on our own. After years of observations, we ended up at Riley Children's Hospital. What we knew in our hearts to be true was confirmed- Ben was a person on the autism spectrum. Ben's official diagnoses on that day was PDD-NOS Pervasive Developmental disorder- Not otherwise Specified.
I once heard Autism Spectrum disorders described as a bucket of water. Inside the bucket are water balloons. One balloon is classic autistic disorder, one Rhetts, one aspergers. All of the loose water is PDD-NOS because those persons do not fit neatly into a category or are sub-threshold meaning it is not affecting their life right now. Ben was sub-threshold with one criteria- language. therefore, at the time of our original visit Ben did not fit neatly into a balloon. Since that time, Ben fits clearly into the aspergers balloon.
Aspergers or high functioning autism is a neurological disorder. Ben does not HAVE aspergers. It is not a disease or a broken toe or a cold. It is not temporary. It is not treatable by over the counter medication. Aspergers is a way of being. Ben's brain works perfectly well it just does things differently. Ben was born with aspergers. It is not something he caught or that was caused by vaccines. This has nothing to do with the diet he follows or even how much sugar he eats. This official diagnoses did not change Ben overnight and it doesn't change who Ben is. The diagnoses just allows us to effectively serve Ben's needs.
Aspergers can and will effect every part of Ben. Including but not limited to, academic, social, and emotional life. There is no cure but there are therapies and interventions which is why an IEP at his school was essential to his success. Ben will require guidance in social, academic and relationship skills at every point in his life. He will need guidance in conversations, friendships and everyday life. We need all of you to support him the best way you can.
Some of the challenges Ben faces on a daily basis include
*The struggle to have spontaneous exchanges.
*Understanding non-verbal behaviors and reciprocal social interactions.
*Ben has not yet mastered the art of conversational turn taking. It is not natural to him. He has trouble reading facial expressions and body language.
*Eye contact can be difficult.
*Ben struggles to understand the social aspects of language. He likes to share facts and information but not thoughts and feelings.
* Ben is very literal. Your children probably laugh when reading Amelia Bedelia. Ben did not understand how it was funny because it was "true"
Ben struggles with gross motor and fine motor coordination and lags about a year or two behind his peers.
* Ben is what we call "mind blind" He can not make inferences about what someone is thinking. He assumes we are all thinking what he is thinking.
*Ben is sensitive to all sensory stimuli. All sight, sound, touch, taste, and particularly smells(due to his peanut allergy). This is all driven by anxiety
This list of struggles may seem long and extensive and I will tell you there are days it is difficult both for Ben and the rest of our family. We have told Ben that God has a special plan for him. It may seem like it is hard but it will all be worth it!
Many of the behaviors you will see from Ben are not under his control. They are not a result of willful behavior or malice. At times he simply does not know how to respond appropriately. Because of this Ben and our whole family are judged on a daily basis by people who do not even know us. What these people do not see or choose not to take the time to see, is what an amazing person Ben is. He is conscientious, reliable, honest, he is free of prejudice, intelligent, talented, he easily forgives, not inclined to embellish, follows through on promises, recalls the fine details of everything, chooses honest, dependable people to spend time with, doesn't discriminate based on social hierarchies, he has no hidden agenda, and impressive long term memory and he is smart. Kevin and I feel so blessed that God has entrusted his care to us.
One of the things that has been very difficult throughout this entire process has been how to disclose this to others. When? To whom? Somewhere early on in this process Kevin and I decided we would work as a team knowing that how our family approaches this challenge and how we choose to disclose this would be OUR choice not the doctors or teachers or school. Our number one priority was to protect our family which means, up until recently we felt like we should only talk about it with people who are in direct contact with our family. We needed to be sure that Ben understood the diagnoses and what disclosing it would mean for him. We did not want our friends and family to be consumed by a label. We did not want to use Ben as our personal mission to educate people- to be the poster child for aspergers. The point is not to have everyone feel sorry for Ben but to help them realize how awesome he is and help us celebrate who he is and to see his diagnoses as one of those differences we all have.
Now that has changed for a number of reasons but a lot of it has to to with the fact that people feel like they can judge us. People who know me well know I am not the type of person who tries to impress others. I am not running for middle aged prom queen. I tend to shy away from group coffees and groups because I do not ever want to be put in a situation for gossip. I have to admit, that it is very hurtful when other people think that they know better than you do what your child is like and how to raise him. It hurts to be accused outright or with subtle hints that you are either not doing your job as a parent well enough to control your child or you are doing too much and keeping them from becoming independent. We are also aware that kids are sometimes mean. Adults are sometimes mean. I realize that I cannot change adults or kids who are intentionally mean and have their own personal issues but educating our friends and Ben's friends about his challenges and striving to improve Ben's social interactions with those who are not just mean will help Ben. If I can help a group of kids or adults understand a challenge or a disability and I can improve those interactions. If I can get people to understand enough to avoid making thoughtless comments or to reach out and help Ben then I will have succeeded and telling everyone will be worth it.
Our goals for Ben are like any other parents goals. Independence, success, happiness, and yes love. Some days when we are constantly putting out fires and it's very hard to see that far ahead. I do not want to be consumed by the label but to be consumed by my son and the wonderful person he is.
Please respect us for knowing our child better than anyone else. Please respect us for our decisions that we have made but most of all respect Ben for all that he is and all he will become. God has made him unique and special because he has great plans for him. Thank you for being a part of that great plan.

Mary (with Ben's approval)

"When you are going through something hard and wonder where God is remember the teacher is always quiet during a test." Trust in the Lord.