One night on a recent vacation, I met a couple of other mothers and I was asked what kind of work I did. I told them about volunteering with Camp Twitch and Shout and working with Camp Twin Lakes in the summer … which I tend to babble on about these programs frequently.
As I described what type of programs are held at CTL, one of the moms opened up about her daughter being diagnosed with high functioning Asperger’s at the age of 18. She described how after high school her daughter had lost touch with all of her friends – I think she is in her early 20s now. She felt that her daughter had alienated any of the friends she did have because she has a habit of saying whatever comes to her mind – no filters … appropriate or inappropriate, sensitive or insensitive … her honesty and openness are never a challenge.
What I saw on this mothers face was a lot of pain and sadness … even though her family was terrific with her daughter … she had no friends.
Of course being a great 3 a.m. thinker … I don’t think I was very reassuring at the time. In trying to reassure her, I had opened up that my son was diagnosed with high functioning asperger’s also around the age of 10. My son has a few diagnoses … this is one of them.
I described an event that happened at home that makes us all smile when we think of it – this happened right around the time of his diagnosis. We were running around like our usual crazy selves getting ready to go somewhere. I was barking out my mommy orders before leaving.
I asked my son to get in the shower and at least wash his hair before we left. A few minutes later he walks in to our room … fully clothed and completely soaked … he just looked at us and said, “I think I forgot to do something first” … yes son … getting undressed before you get in to the shower might be a good idea?! But here it was … all we had asked him to do was wash his hair? My husband and I both looked at each other and just giggled … oh my goodness.
I know that getting a diagnosis makes it real, and it can be a tough pill to swallow. But having a diagnosis can open the doors to making things better … even if you don’t have a formal diagnosis, it can point you toward an understanding that can help move your child forward towards having a healthier perspective about their peers and others, better communication, and eventually becoming a more independent and productive member of society.
I described to this mom how much progress our son has made by knowing about his diagnosis, and learning how to communicate with him more effectively. How his big sister has been a tremendous influence in his life. How pushing him to do things outside of his comfort zone many times is helping him reach that independence, and to developing a social network outside of our home.
What I didn’t get to say to her was … don’t give up … the great thing about Asperger’s is with proper treatment for any underlying disorders, along with coaching and guidance … they can learn! What I see in my son is he is a rule follower … he just does not instinctually know the rules?
Sounds simple? Well … far from it, but it’s fascinating and rewarding. We’re not always sure of what rule needs to be taught or explained? We are not always sure what problem needs to be addressed until it’s in front of us … so we are always a little off guard.
There are some basics that we started with including making meals, laundry, hygiene, dressing, etc. But then there are the social rules that are a lot more complicated like friends, bullying, rejection, girls or why someone might not want to hear a dissortation on robotics or pokemon. He has always been a really sweet, sensitive, smart and interesting boy … usually getting along in conversation with adults much easier than his peers.
His senior year in high school he took a drama class that was an extremely positive experience. Having our kids try activities that are social and scripted can be fantastic … they are smart and creative.
At the end of the year, he had a small part in a series of one act plays … it was a 3-minute act that he wrote and performed on stage. He never really had any fear of being on stage, so that didn’t surprise me, but what he wrote and performed brought me to tears. He wouldn’t tell me what it was … I didn’t know what the act was about, or that it was a solo … but this is the best example I have of not giving up on these kids – they are the best. :)
There is a heckler at the beginning of the following video … but his classmates stared him down and it didn’t interfere. Also he wrote this after having received news that his crohn’s disease had worsened, and it was inevitable that he would have to start receiving infusions. He simply said to us … I can’t catch a break can I?
Here’s a link to his performance:
http://www.youtube.com/watch?v=jGBqTwUJyrw&feature=youtu.be
