Sky was wild today but went to sleep very early – at 7:00 PM!
Sky is wild quite often lately.
Describe wild?
Rips, tears, breaks, takes everything out at once, and throws things on floor when he is done with them.
Sky is still not using the toilet for BMs, but holds it in at school. In fact, he always “holds it”. So last week, when he had a few problems at school, I was willing to bet it was a constipation issue. This weekend however, there was no constipation and well, Sky's behavior was still bad.
Monday, January 11, 2010, seemed like the worst day in our lives.
Sky would not do his homework. We begged pleaded, cajoled, ordered, and threatened. He was adamant, ornery, and mean. Arghh.
“No! I not do my homework,” he yelled. Then pretended we did not exist.
Funny thing is this was a special day for Sky; he received a backordered ‘flyboat’ from Santa!
Even threats that Santa was watching did not help his messed up behavior.
Fred was both angry and sad and said that he had a headache.
“We are not doing Sky any good.” He told me. “Maybe he needs to live somewhere else. We must be doing something wrong. Sky needs more help than we can give him.”
Fred was crying. I was crying. Suddenly Sky was crying too.
“I’m sorry Papa has a headache.”
He never seems to be aware of his surroundings. How much did he understand? This could be traumatic!
“You know,” I told Fred later, “no one in the family can take Sky. They all work and have their own families. Do you really think he’ll be better off in a foster home?”
Fred calmed down. “I don’t think Sky will ever be able to live in the real world. He’ll never be better than Beth. (Sky's autistic mother) and she can’t live on her own. Honey, what’s gonna happen to him when he is in his twenties and we are not here anymore?”
“It’s better for him to have us now, as long as we can do it, than any alternative." I reasoned. I also reminded him that we were finally going to get help. (We were just approved for CAP, which meant we would have someone here to help us with Sky every day!)
We tried again to get Sky started on his homework. This time there was no problem and that was comforting for all of us.
Our baby cried himself to sleep hugging us, asking us to keep him. We kept reassuring him; it was so sad.


Tuesday, January 12, 2010 – Sky woke up crying.
“Where’s Papa? He needs me to hug him.”
“He’s in the kitchen making coffee,” I said.
Sky bolted out of bed and down the stairs with me close behind. He ran over to Fred and said,
“Please keep me Papa.”
How sad. How very sad. Our hearts ached. I cried and hugged Sky. Through my tears and said, “I’ll keep you always Sky.” Fred was in a daze. I thought maybe he didn’t get how bad Sky felt, but he did not reply.
I half wanted to keep Sky home from school but decided to take him; it seemed more normal. I even let him bring his new ‘flyboat’ to school.
The Special Ed teacher was in the hall and she asked if Sky had a good morning. He kept walking. I looked at her moment and answered "no” and I kept walking too - holding back tears.
Sky’s mood changed in the classroom when all the kids made a fuss over the ‘flyboat’. Still tearing, I left the room without talking to his regular classroom teacher and headed back to the ‘special ed’ room to explain the situation.
As I left the room, the teacher’s assistant followed me to complain about Sky’s lunchroom behavior. She said terrible things adding more grief to what I already felt.
Sky didn’t spit food at home I told her. It was a something I could only talk to him about. She was really out of place, telling me that if the behavior did not stop we would have to come and monitor Sky during lunch. Arrrgh! She said his behavior had been atrocious since he returned from Christmas break. By now we were in the special Ed classroom. I turned to the other teachers and said I stopped in to tell them about the night before and to say we’ve had problems at home since the holidays. I told them, I was going to call the pediatric psychiatrist, Dr Foreman, to see if there was anything she could do to help.
As soon as I got home, I called the doctor and left a detailed message. The nurse called later and if asked if any meds had changed. I told her only that his Trileptal went from the brand name to generic and yes that is when I was sure the behavior change came about! I got out the bottle, the date on it was December 22, 2009. Yes, this was when the behavior problems started!
The nurse called again later; the doctor wanted to put Sky back on the brand name. She said that sometimes things like this occurred with generics. (At $375 a bottle I worried Medicaid would not agree.)
Later Fred and I did some autism research and discovered we were not doing a bad job; Sky’s traits are the norm for autism! Our being too lax and loving are NOT the cause of Sky’s problems, autism is!
We’d always taken the blame for his behavior but everything we read vindicated us. We also found horrible things were happening to autistic children because of their stubborn behavior patterns. The use of restraints is common and some children were actually ‘murdered’ by these techniques. They often roll the children in weighted blankets and some of the children were suffocated. We were appalled.


Wednesday, January 13, 2010 – Medicaid approved the change! Sky’s been a bit passive these last two days. Even though Papa also promised to keep him forever, Sky is still bothered. He made the teacher call his Papa at home today, to say that Sky was doing all his class work.
The big thing now is will the medicine make a pronounced difference? Today he did two days homework! (They forgot to send his work on Tuesday – a blessing for this family.)

1/21/2010

Too bad I let so much time pass. Last Friday Sky got in trouble
for spitting in the lunchroom. The teacher who takes him to lunch is an
assistant and is always complaining about his behavior at lunch. Last week she
told me if I didn’t do something Fred and I would have to come and care for him
at lunchtime. That’s fine with me, but I believe the school has to do something
about it. Talking to Sky and telling him not to spread his lunch out and not to
spit does not work. If some kid tells him to do something…he will.

Thing is he got suspended! He was home to day for spitting last
Friday. We had holiday in between. I will elaborate on this story when I have more time.

Oct 7, 2009

Sky had a bad day today. First wild day in four months…first
piece of catapres patch in four months! They said he was hyper at school and at
home he was WILD. Had to be something he
ate or drank at school.

On the potty side: Other day he said “Honey I can’t use the potty
because it frustrates me.”

Frustrates him!!?? Where did he get that?

Oct 8

Catapres didn’t calm him down but today he was depressed. I took it off. I’m sure yesterday’s behavior was a reaction
to something.