Hi B...
My name is A.. I have a 'special' lil angel girl who is 9 yrs old. She didn't talk until she was almost 4. We knew that there was something 'different' when at 2, she didn't even try. She seemed content with allowing her older siblings to talk for her.
When she was 2 1/2 a good friend of mine suggested taking her for testing for autism. At first, we thought she was deaf, because she didn't even acknowledge it when we talked to her, let alone answer us. When that (thank God) turned out ok, a long battery of tests followed. The drs weren't finding anything "wrong' with her and we were getting frustrated because we knew as her parents that something just wasn't right. Then, this friend of mine who happens to be a speech therapist, suggested us finding a developmental pediatrician. It took a lil while and alot of research, but I found a wonderful one in our area. She spent time with our lil angel, with us watching. After spending only about an hour with our daughter, she said that she had Asperger's Syndrome. It is high functioning form of autism. It has more to do with speech, social skills and emotions than the more serious 'symptoms' of autism.
This wasn't an easy process for us. I had to be willing to extensively search for the best possible care for my lil girl. It took time, patience and the willingness to fight for my child. But if we as parents don't fight for our children, who will?
Not long ago, I wrote something that went out to MANY parents of 'special needs' children and their care takers. I am going to include it in this hoping that it will help you, your child and many others. I hope it's ok to do this. Here is is:
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My Baby's Story
Take a moment and completely clear your mind. Picture yourself in a room that is completely dark, with no light source. At the very beginning of this mental exercise you are by yourself, yet all of the sudden other people begin to enter the room. There are so many of them, yet since darkness resides it is hard to see the full image of anyone in particular, which causes you to see only the profiles and outlines of individuals. You come to the realization that these people are enjoying talking and laughing with one another. As you focus in a little bit more on the events occurring around you, you see that there exists a giant bouncing ball in this room. Each individual is able to grasp and play with this ball when his or her turn of ownership comes around. This ball is recognized as the great ball of communication. Yet you noticed that this ball never comes to you, leaving you little chance to participate in the joining celebration of comprehension. You begin to feel completely isolated and overcome with sadness. You see that the people around you try so hard to fully comprehend and understand your expressive thoughts and words, yet they never fully get the picture that you consistently try to paint for them. Intense feelings of frustration arise, since your projected views are not being acknowledged as they should, or as well as everyone else's in the room. You try so hard to make them see your point. "Just let them understand me" is the thought that replays in your mind. You feel as though you live in an imaginary bubble. This bubble causes the communication coming in and going out to be extensively confusing and extremely misunderstood. Right now you might feel as though separation and distance from your environment in your only safety net to keeping yourself at a sane point.
Why would anyone be subjected to these emotions throughout their daily lives? Who are they and what causes them to feel this way? Her name is Summer Rae and she is 9 yrs. old. She was diagnosed with a disorder known as Asperger's Syndrome (a mild, high functioning form of Autism) when she was just 2 yrs. old. She is my little girl.
The majority of people, when they hear the word autism, automatically perceive the person who has it as being mentally retarded or severely handicapped. Yet there are many different levels of Autism and Asperger's Syndrome is considered to be of the mildest forms research has acknowledged. Asperger's Syndrome, with many characteristics of autism, more specifically affects a person's ability to interact socially, to develop communication skills, and understand emotions. Children with this disorder tend to place themselves in their own little worlds in order to escape the frustration of being misunderstood.
Just before Summer had turned 2, doctors did a series of tests on her to see if she was deaf. They did this because most times Summer did not show an acknowledging response to someone who was talking to her. Many children with Asperger's Syndrome are automatically titled as deaf and this puts a pause on their chances of development at an early age. At the age when a child normally begins to form short sentences such as "hi mommy" or "I want a drink," Summer was still mimicking sounds in her environment. This restraint on communication led to extreme displays of temper tantrums and episodes of acting out frustration, which included self-imposed arm biting and screaming. This type of display had taken place because she was not being completely understood as she tried to project her feelings.
Now, a little less than 7 yrs. later, Summer is progressing absolutely beautifully. Since her original diagnosis, she has been following strict weekly schedules at the John Heinz Institute of Rehabilitation in our home town. A scheduled agenda of tutoring and schooling was established for her, as well as other children with this syndrome, in order to enhance the extra help that is needed to develop a better understanding of social skills needed for regular interaction. These skills are those that she will need to know in order to exist comfortably in her daily environment. Not only does she learn how to relate to the rules of communication with society, but we, her family, also learn so much more on the level of understanding where she is coming from. This helps us immensely in our efforts to communicate and respond understandingly to her thoughts and ideas. The past 7 yrs. of Summer's life have been dedicated to daily physical, occupational and speech therapy appointments; along with the awesome programs and support within her school at Wyoming Valley West and extracurricular activities. (She is on a local bowling league, she plays T-ball, she's a cheerleader and she's involved with the Big Brothers/Big Sisters program.) This strenuous agenda enables her to establish a learning discipline that she will need throughout her life.
The information projected concerning this special little girl inevitably attains meaningful attachment to me since it is my daughter's story. More than anything else, I want people to completely avoid the idea that Summer is to be stereotypically titled in any way, shape or form. Correction...she should be titled as follows: A compassionate, expressive and undeniably intelligent little girl who has more love expatiating from her than any one person can possibly handle. She has taught me so much about life in the sense that she has been allowed the opportunity to see things through a different set of eyes than those of the "norm" of society. She has been given a gift that I will never completely have the ability to grasp, yet I will do my absolute best to soak up all knowledge that she willing to share with me.
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I am my daughter's mommy. I didn't and won't let someone else tell me (even a specialist) that they know my child better than I do. Trust your instincts with this. Don't just give in when it comes to your child. We are all they have!
A.