Sherry - posted on 08/14/2010 ( 5 moms have responded )
Been going through reading the stories on here and my heart goes out to you and your families. I am no expert but do have many years of experience with many areas of raising mentally handicapped child. So in hopes to help anyone in anyway to keep fighting here is my story.
My daughter, Amber, is 23 yr.old now. I was a single mom at age 16, and boy did I have no clue what was in store for me. By age 2 I noticed she wasnt talking or acting like most kids her age. She looked fine, but she wasnt talking and her tantrums were out of control, even for a 2 yr. Old. This was the beginning of my fight. From age 2-7 I fought doctors and the school system to get a diagnosis and treatment for her. I was talked down to, ignored, belittled, sent from doctor to doctor just to be told I was the problem. The school system even sent her to regular school. I was so afraid she was going to get hurt or hurt someone else but they shrugged me off. I took her to school first day and I tried to tell them again of her behavior problems. They called me 45 mins later to pick her up and called an emergency IEP meeting.
At age 4 she started having seizures and was put on Tegretol for a year and a half. She was up to 1500 mg. A day and still had seizures before they switched meds to Dilantin which finally stopped seizures. The older she got the worse her behaviors were. She was kicked out of several daycares and even church. At age 7 I finally got her into Kennedy Krieger institute in Baltimore for an evaluation. This was after years of calling and writing letters to different doctors, hospitals and organizations. After months of all kinds of tests they call me in for a meeting. After 5 yrs of fighting, I was 23 and Amber age 7, I was given several diagnosis'. It was bittersweet, i finally was told it wasnt me. being a bad mom but what it meant for my daughter. She had brain damage on left side of her brain which resulted in her being mentally retarded. Also, PDD, ODD, ADHD, Epileptic, with a mood disorder. They didn't specify which one til she was 18. Then she was labeled with bipolar in addition to all the other diagnosis'.
I ran out of the room crying hysterically. All my hopes and dreams for her was destroyed. The illusion of what I thought being a mom was, completely vanished. That day was the start of a path I didn't choose, but it taught me a lot. Don't get me wrong, it was and still is the hardest thing I've done so far. Emotionally, mentally and physically!! Many, many rough times. Some days was the lowest mentally possible without crossing that line of just laying down completely given up. Something always brought me out of it. To this day I dont know how I hung in there. I have been hit, punched, bruised, bit, knocked down stairs, head butted, kicked, spitted on, snotted on, feces wiped on me, things thrown at me all in the midst of her outbursts. Her putting her arm, leg and head through windows breaking them during her outbursts. Too many hospital trips to count. Destroying anything in her path including furniture. Her bedroom would last a year from her breaking it.
I will continue my story later.