Hi, group! I've been gone a while.
It took me about three years to get my son stabalized, meaning functional. Three years from the start of the search for a diagnosis, to the proper diagnosis, to medication, intervention, and therapies. I wanted to give ya'll and update.
Since his diagnosis almost one year ago, my son has been put on 3.5mg of Abilify, 1200mg of Inositol, weekly socialization therapy at school, and weekly vision therapy. I have changed my parenting and expectations. I have received a lot of help and understanding from my family in the past six months. My son's SPD, Mood Disorder, and PDD-NOS are all under control. He is not perfect. He is not 'normal'. But he is functioning in all aspects of his life.
In our case, I very quickly found the right meds, therapies, interventions that actually worked. I didn't have to go through a lot of trial and error. After many wrong diagnosis (ODD, Bipolar, OCD, ADHD), we got the right one and went ahead with full force. I knew what to do, thanks to you all.
My extended family saw my son for the first time since his interventions at our big family Christmas party in December. Everyone was completely amazed. He made eye contact. He didn't cry or throw tantrums. He played with other children. He didn't get hurt. He was wearing socks and clean clothes. They all said he seemed like a different child than the previous year they saw him. They were just in awe at the improvements in his physical appearance and social skills.
My son has not had a violent rage since June or July of last year. Melt downs that last more than a few minutes have reduced from regularly to about once or twice a month (lasting up to only two hours now). Last year my son was raging 15 - 30 hours a week, with meltdowns during most of the other hours.
He has not been sent to the principal's office once this year, whereas last year he had regular visits and detentions. I have not even received a phone call home from the school.
I did go through with the IEP assessment at school. I requested it over the summer, after a horrible school year, and while trying to find the right diagnosis and interventions. By October, when we had the IEP meeting, I felt he did not require an IEP. Things were going so well. The school staff agreed. He does get some informal special accomodations such as being allowed to type rather than write his homework, but nothing major.
The past few years have been rough to say the least. Unbearable 99% of the time. A year ago my son was so violent, a danger to himself an others, and no doctor or counceling could seem to help, I was at a point where I thought he would have to be in residential treatment to protect himself and others. It was bad...
For years we were isolated. We literally couldn't go to the grocery store due to his tantrums. It wasn't about how others would react to us, it was about violent rages (usually sensory issues) and me not actually being able to get the shopping done.
Now....we can go to the store. We can actually go to many stores in the same day. I know it sounds trivial, but to me, it feels like freedom for both me and my son. We can go to the family parties. We can go to friend's houses. We can even go in the back yard.
I also have my own life back. I was so overwhelmed that I completely let myself go. I didn't have time to shower because of morning and evening rages. I didn't sleep due to anxiety. I had to pee with the door open to make sure my son wasn't hurting his brother. I could rarely have anyone babysit my son because I never knew what would happen.
Now, I can have my close family baby sit him. I am able to have friendships. I even started dating and have a boyfriend now.
I am writing this update for anyone who cares, but especially for the parents that are struggling and can't see any hope. I never imagined we would get to this point. Functional. We are a functional household again. I am also writing it because I need a reminder on how much things have turned around.
The interventions I mentioned have been expensive. My out-of-pocket medical expenses are $650 plus the monthly health insurance premium which makes it around $800 a month. It's a lot of money, but it's worth it. I would like to have my son in OT and some other things, but I had to prioritize due to the expenses. I really think we would also benefit from family counceling/therapy.
So, this is my update. I hope you can get something out of reading it.
17 Mar 2011, 10:47 am
