The story of Ace

I'm really at a breaking point with Ace.

He's not unpredictable and generally follows directions and rules well; for example, he knows that when I'm in the shower he is not to open the door for anyone and is to come and get me before talking to anyone at the door.  He does that perfectly.  If we're at the pool and I need to go to the bathroom, I can trust him to sit in a chair next to the pool and not move the whole time I'm in the bathroom.  If I tell him to stay in one place, he stays there.  He brings in the trash cans on trash day without us asking.  He'll do any chore we ask him to do.

But his mouth and his temper are a catastrophic combination.  Since I've never especially talked about it on here, I'll document to catch everyone up.

His pre-K4 year was horrible.  I was being called almost every week to come pick him up, getting bad behavioral reports nearly every day.  I took him in for a behavioral evaluation at the child development clinic at UMC that winter.  He wasn't diagnosed with anything, which was hugely frustrating, but was referred to a child therapist for behavioral therapy.  He saw her once a month (which was not nearly enough) until the summer of 2011, when she referred him to an occupational therapist because she believed he had some sensory issues.

The occupational therapist saw him for nearly a year before graduating him, and his Kindergarten year was considerably better, I believe because the special needs coordinator at that school learned how to manage him.  He was still getting sent home at least once a month for making horrible threats, but he mostly got good reports.

I started him with a counselor last summer (2012) because his defiance at home is awful and I knew it would be a problem when he started 1st grade at the local public school.  The first appointment was with me, understandably.  The second appointment was with me; I grew a little impatient.  Not to brag, but Drew and I are stellar parents and we have tried everything under the sun to improve Ace's behavior and nothing has worked.  If his behavioral issues were an issue of parenting strategy, Ace would be a superstar.  The third appointment was mostly with me but included a lecture to him.  Halfway through the fourth appointment, I told her that if she wasn't willing to start counseling HIM, we wouldn't be back.  She lectured him a little, which is not what I meant by counseling, so we didn't go back.

Ace's first grade year started with a bang; I was on a first-name basis with the principal on the first day.  He was suspended within the first week.  Through my connections, I managed to get him in with a psychiatrist very quickly.  The psychiatrist diagnosed him with oppositional defiance disorder and obsessive compulsive disorder and started him on Risperdal for his aggression and OCD behaviors.

I didn't like the Risperdal from the start.  It made Ace both sedated and restless, and he put on quite a bit of weight, to the point where he's wearing size 8/9 jeans which we have to roll up.  Hard to make a kid with cerebral palsy exercise.  Most importantly, it wasn't improving his behavior at school.  We had meeting after meeting after meeting and they threw all their resources at him but eventually his constant highly violent threats and aggressive, violent behavior proved too much for the school to handle and he was referred to the alternative school.

At the same time he was sent to the alternative school, I had Ace placed in an intensive daily therapy program in which he went to group therapy daily, saw an individual counselor once a week, saw a psychiatrist once a week, and attended 2 therapy sessions per week with me and Drew.  They also had parent support classes for me and Drew.  The psychiatrist diagnosed him with Asperger's Syndrome on the first day and the angels sang "Alleluia" because damn it, I've believed he had it since he was 16 months old.  He was prescribed Zoloft, which we tried for 2 weeks and hated because he was so restless and was having nightmares, and his Risperdal was increased.

He was in the therapy program for around 3 months when our insurance decided to stop paying.  We believed he had gotten everything he could from the program, so we didn't fight it.  He was doing well in school and relatively well at home.

Due to a lot of personal things going on with me, I let his Risperdal prescription lapse.  I didn't see a significant change in his behavior at home and received no reports of negative behavior from school, and I greatly appreciated the fact that he wasn't extremely sedated and restless all the time.  I decided to try to find him a therapist who does Applied Behavioral Analysis and pursue that route with continued medical supervision from a psychiatrist.

The Wednesday before Christmas break, his teacher pulled me aside in the carpool line and told me that he had been threatening to kill his teachers and classmates, had been constantly defiant, and had been hitting anyone who dared cross him.  I was devastated.  I looked at him, said "again?", and got him home and sent him to his room.  That night at the dinner table, I asked him if he understood what it meant to kill somebody.  He did.  I asked him if he understood that killing a person would make them die.  He did, and said "but they don't do what I tell them to do."

I broke down.  Sobbed my eyes out for the rest of the night.  Begged for help on Facebook and Twitter and was flooded with resources.  Thursday I talked to my therapist for a very long time.  Friday I got to work.  I spent all day on the phone and on the computer, sending emails, leaving voice mails, trying to contact everyone I could.  But since it was the Friday before Christmas, I didn't get very far.

Christmas came and went and Drew and Ace went down to his mother's house.  The day after Christmas, a woman called me and told me she had been given my name by a mutual friend of ours and wanted to offer some assistance, since she, too, has a daughter with Asperger's.  She absolutely inundated me with information.  Gave me names, numbers, facilities, doctors, therapists, everything.  The next two days, I pursued all of her leads.  Made the decision to talk to a local child psychologist before I made my next step, which I believe is inpatient psychiatric care.

Then my grandmother got sick and went into the hospital.  Then my grandmother died.  Then we had the funeral.  Then I got the flu.  Then Ace got sick.  Now I have bronchitis.  So things have effectively been frozen since the day after Christmas.  Especially since the therapist I want to contact will not return my email/phone calls.

This week I have some decisions to make.  I am so tired.  And unfortunately, since I've taken so much abuse from Ace, I feel almost as if I've lost most of my maternal affection and am doing everything robotically.  I was abused badly as a child and was forced to shut down emotionally to protect myself.  This is PTSD, and most parents of children with behavioral disorders feel exactly the same way I do.  I can only be screamed at, defied, threatened, pelted with hatred so many times before I shut down to protect myself, and to some extent, protect him, because I don't let myself feel any emotion, including anger.  I make it a point to tell him every day that I love him and cherish him, but I don't necessarily always feel those words.  I'm sure Ace can sense how I feel and it's not helping.  And I'm in therapy.  A LOT of therapy.  But I'm still an automaton.  And I don't know how that's going to change.

I haven't given up hope yet.  Yet.