July 30, 2010
Dear Friends and Neighbors,
We are sending out this letter to those of you have close contact and interaction with our family in our neighborhoods, and at church. In an effort to foster understanding and compassion, we want to share some intensely personal and private information concerning our family with which we have struggled for some time. However, we feel the necessity of sharing this information with you outweighs our personal feelings.
Along with having diabetes, Connor also has a form of High Functioning Autism called Aspberger’s Syndrome. I will refer to Aspberger’s Syndrome as AS from now on to make it easier. AS affects each person differently, and people with AS can’t be identified by physical characteristics. One child with AS may behave totally differently than another child with AS. This is a challenging problem for him and our family.
AS for Connor means that he thinks differently and processes things differently than others. One aspect of AS is the lack of social skills and lack of maturity that would seem appropriate given a person’s age. For Connor this means that it is hard for him to distinguish body language and sarcasm. He understands and takes things literally, and the world is very black and white to him. Although fairness and equity are very important to him, it is tough for him to understand when to stop a joke or horseplay or when those around him are getting uncomfortable. It is difficult for him to understand the difference between when someone is “friendly” teasing and “bully” teasing him. When he does the teasing, he may say something unkind or hurtful, but he doesn’t understand “WHY” his words were unkind or hurtful. Connor communicates fine with adults and younger children, but dealing with kids around his age is very tough for him. Sometimes he says things without thinking or without even knowing what the words mean. Sometimes he says things or does things that are inappropriate for personal attention. Loud situations and large groups can be very stressful for Connor. He may misunderstand or misconstrue a situation or interaction because he takes things so very personally. Please understand that this is all part of Aspberger’s Syndrome.
AS is not something that will just go away. There is no “cure” for it, nor can it be “fixed”. So what does this mean for our family? It is something that we deal with on a daily, hourly, minute-by-minute basis just as we do with the diabetes. Connor can learn to cope and deal with situations and people, but it will take longer and be much more difficult than for other children. Because his form of Aspberger’s is a higher functioning form, he understands that he is different, and that alone bothers him greatly. He knows that he has extra challenges which are difficult on him as well as our family. He has to work much harder at making and maintaining friendships, and at his age, that is difficult anyway without the added challenge of AS. These are some of the challenges that Connor faces but not all. There are other aspects of AS that are too lengthy to go into at this time.
Here is where we are seeking your help and compassion. When you are around him, please remember that he is still a child of God. Please remind him, with kindness, of appropriate behavior if he is in your home or at church functions. Connor is a bright, intelligent, funny, hardworking, observant, and caring boy. Please understand the goodness in his intentions and that he truly does not wish to misbehave. Please be patient with him and understand that we are aware of our child and what he does. It is our responsibility to ensure that he understands that he is still valued and loved and is just as important as everyone else. We ask that you be helpful and supportive of him and our situation.
If you have any questions or concerns, please talk to us. There are many books and websites about Aspberger’s Syndrome. One of great value is www.disabilities.lds.org. This site gives a lot of helpful and specific ideas on how to help and understand various disabilities.
In addition to the challenges Connor faces, we want to alert you to some of Cayden’s challenges also. Again, these problems can’t be identified by any physical characteristics. Cayden is developmentally delayed and also has Sensory Processing Disorder. Both of these present different problems for Cayden at home, at school, at church, and in the neighborhood. Cayden is quite immature and plays much better with younger children. He lacks some of the social skills that are evident in kids of the same age. He is less aware of danger and consequences. Without going into great detail, both of these challenges limit and interfere with his normal daily activities. Cayden is a happy, smiley, caring boy. He has to work much harder at mastering basic tasks and processing all the sensory input that he is receiving. He also struggles with loud situations and large groups. Because of the sensory issues that he deals with, he is quite fearful with his surroundings sometimes and therefore will withdraw. These challenges can be worked on and progress can be made but again there is no “cure” for either. Cayden may catch up developmentally, he may not. We don’t know. He can learn to cope with his sensory issues but that will take extra time and hard work.
What can you do to help? Just like Connor, Cayden needs patience and understanding. He needs acceptance and love as well as protection from things that he may not understand. He needs encouragement and extra time in accomplishing or doing things. At times he may need gentle correction. He also needs to be looked out for because he does not always understand or know what to do in unfamiliar or changing situations.
We do not ask for pity or for judgment. We ask for extra love and understanding for our children and our family. These challenges affect ALL of our family and we ask for your help in letting these kids know that they are loved. We know that all of us have different challenges and abilities and that we all struggle. We know that Heavenly Father loves each of your families just as He does ours. We know that Heavenly Father wants us to be more loving and supportive of each other just as our Savior would. If you have questions or concerns, please talk to us. If you want more information, we would be happy to supply it. We hope that this information will be shared with your families and children to the degree that you feel will be helpful. We apologize for any frustrations or offences any of you may have felt regarding our family. We offer you this information and pray that you will understand us a little better, as well as others, who struggle with disabilities.
Thank you,
Don and Jennifer Adams
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