Friday, January 11, 2013

Asperger's Is My Life, too

As I've mentioned before, my daughter has Asperger's Syndrome.  It's a high-functioning form of Autism.  What it means is that my daughter is incapable of social learning.  She doesn't recognize facial expressions, sarcasm, idioms, or most forms of subtlety.  She is immune to peer pressure, as she genuinely doesn't care what other people think.  She has no interest in fashion, what music is popular, doesn't attend dances or sporting events, or do anything social.  If you're unfamiliar with the syndrome, picture Sheldon on The Big Bang Theory.  We don't have the good writers who make it all come out funny in the end.  Take that, add a violent temper and profound desire to lie and manipulate her surroundings, and that's my daughter.  I tell you this because coping with her has taken up huge amounts of my time and energy of late, and it's putting a huge dent in my knitting time and interest. 

The day before the tragic shootings in Newtown, Connecticut, my child had another of her violent outbursts, and I called the police for help and protection.  It was two weeks before her 18th birthday.  If she had committed the same actions once she was 18, she would have been brought to jail.  Instead, due to her age, she ended up spending the evening in the psych ward of the local hospital.  If you want more info on what living with this is like, please read the wonderful essay, I Am Adam Lanza's Mother.  I practically could have written myself. 

My daughter requires very frequent supervision.  Left to her own devices, she doesn't take her meds, bathe, or brush her hair or teeth.  She can't drive.  She doesn't eat fruits or vegetables most of the time.  She's a big fan of carbohydrates.  She occasionally cooks, but usually forgets to turn off the burner, and puts the dirty pot back on the hot burner.  (This has cost me 4 pots in the last year, because they were too burned to save.)   She spends most of her time on her computer or watching TV or reading.  She refuses to do chores. She is combative and/or self-serving in most conversations.  She doesn't do her classwork or her homework if she doesn't like the teacher, the lesson, or the subject, so in spite of her genius IQ, she is failing 2 subjects.  She is a compulsive hoarder.  And we are moving, but she won't pack her room or her zillion belongings.

Today is not an unusual day in that by noon, I had received two calls from the school, one from the counselling office, and one from my daughter claiming to be ill so I would come and pick her up.  I went to the school.  She's got a little pink in her throat, but no fever or swollen glands.  She's staying at school.

I'm still working on the move, and I have a head cold of my own.  After 18 years of trying to pretend that I'm just like all the other parents, I'm over it.  I'm not like the other parents.  I'm overwhelmed.  I'm tired.  When people ask me how my daughter is, I never know what to say.  She's a very difficult person.  I love her, but I can't always explain why.  She's difficult to like.  People ask the polite questions.  "How's school going for her this year?"  "Does she have a date for the Valentine's dance?"  "She must be so excited about college."

"No," I want to tell everyone.  "Asperger's is her life.  And it's my life, too.  A successful day is when she hasn't blatantly insulted anyone, and she bathed and took her meds.  Everything else is just gravy."


Anonymous said...

I have been worried about you since you haven't posted . My thoughts and prayers are with ou and your family.


Anonymous said...

Nice site you have here. Here's a recent article l discovered :-

dkafpme said...

Elizabeth, I work as a bus driver for children with special needs and most of my students have autism spectrum disorder, I feel your pain. Can you get your daughter into a group home situation? Is that available in your area? Keeping you in my thoughts. Debra

Nancy said...

Elizabeth, even though I've taught students like your daughter, I can't begin to understand how it is to live with a young adult like her. I'm glad that you have your knitting to keep your hands and your mind focused through difficult days. Hang in there! And know that you have many knitters thinking of you.

Anonymous said...

Hi Elizabeth..I just came across your blog and read your entry on Aspergers...I am raising a teenager with PDD, mental health issues and a brain. Injury from the birth process. I can completely empathatize with you and your struggles!! Hang in there...remember to take "you" time often. Also, ask your daughter's school psychologist if they have any resources available where a peer or young adult volunteer could help your daughter build sk.e social skills. Although my son is in the spectrum he still wants friends but has extreme difficulty with interacting appropriately...we have employed many many different strategies in the past currently and moving forward....the one thing we have learned is every kid has "something" that inspires them....find it and you will begin to be able to begin building foundation for your daughter...also remember...before things get better they WILL get worse!! Our kids DO NOT like change (unless itsnon their terms) and WILL try to manipulate the situation to wiggle back to their "comfort zone "... thinking of you... Dawn