Our sweetie pies

Our sweetie pies

Monday, March 21, 2011

Asperger's syndrome

My daughter is sitting behind me, looking over my shoulder, as I type. She is searching Asperger's syndrome on the internet trying to find information about scholarships. She said that she is glad that she is finally diagnosed but also doesn't like to tell people. People treat her differently when they hear the title that is now attached to her. She was just officially diagnosed four months ago. It has been a life long search and a relief to at long last have a title, an explanation, a reason for the way she is; but also a label.

As soon as she entered kindergarten, we knew something was different. She took longer than the other kids to carefully cut out her pictures and glue them perfectly together. The class would carry on to story time and recess and she would still be finishing her project. She was smart. very smart. smartest in the class by far. but always the last to finish. she knew how to cut well and glue well and follow directions, but she would enter her own world while she did her project and aim at perfection. Her artwork was amazing and detailed but always at the cost of other activities.

When I consulted with a doctor about her inability to move on to other tasks, he decided with a filled out questionaire that ADD was the culprit. She couldn't pay attention. The teacher agreed that focus was hard for her yet she could focus for hours on what interested her.

We tried medication but there were side effects. unpleasant side effects. mood swings and loss of appetite. She on her own decided that not paying attention to boring material was better than not enjoying dinner.

Then there was also sensory issues. I was watching a pbs special one night about a little girl that wouldn't let her mom brush her hair. it hurt too much. no matter how careful her mother was, it hurt. and then there were the tags in the backs of shirts and starched skirts and socks with stitching! suddenly everything caused her body to set off an alarm! that was my daughter!

I began to read a lot on different disabilities in children and disorders. Everytime I came to autism, my daughter never fit in the check boxes, but there were pieces.

We spoke with school psychologists several times because classwork was easy but never getting finished and this affected her grades. I was thought to be a permissive mother by some, raising a lazy child that got away without learning responsibility. That was so far from the truth. My daughter worked harder than any other kid I knew. In fact, she rarely had free time because her written work took so much more time than it should have.

Finally one day, we spoke with our new pediatrician about our concerns and she recommended an educational psychologist. My daughter desperately wanted a diagnosis to know that she wasn't crazy. to know there was something behind her struggles. how could she be so smart, yet feel so stupid?

She met with the psychologist and went over with him, her findings, her thoughts, my findings, my thoughts, and they read some materials together. He agreed with her, at long last, no. not ADD, but yes. Asperger's syndrome.

big sigh of relief.

mixed emotion.

a label, yes. misunderstood by others, possible judgement, but validation.

He then called me, later that day, to share his findings with me.

First thing he said? "I want to congratulate you on doing a fantastic job raising your daughter."

a PhD, a psychologist, had not only just validated her struggles, but also my challenges over the years of advocating for her with a variety of teachers and some judgemental parents.

where do we go from here?

I had already practiced many interventions over the years and behavior therapy, and read countless books. we had already overcome lots of sensory issues, anxieties, social situations.

now, at long last, it was just a diagnosis.

she is now deciding on which college she wants to attend. she has come so far. she is independent, confident, social, and adjusts well.

yet there is still not much information on Asperger's syndrome. She was looking for scholarships online and not finding many.

She is planning on studying psychology and hopefully researching Autism.

Now that she knows what caused her struggle she wants to educate others.

It is not a lazy disease.

1 comment:

  1. Before I type this I just want to say that I’m not a tv watcher at all. We don’t even have one in our living room, lol, -- but in all sincerity, there is a really good show called Parenthood on NBC, and one aspect of the show is about how a family handles having recently found out their son has Asperger’s. (It brings me to tears at every episode, and it’s not a reality show, I’d check it out On Demand or Online if you find an hour to kill)… But one of the episodes recently was about how his parents had to explain to him that he has it, and through the advice of their specialist they were given this cheat sheet for their discussion of all the benefits to having the condition… His father thought that it was just a bunch of positive spin -- but he realizes when his son is able to remember and do these unbelievably impressive things, that there are very special aspects to having it.

    I wish I had something more contributive to say… I don’t know anything about it myself, but it sounds like your daughter is more driven and motivated than many people her age that I know. I think both of you might enjoy the show.