I get a lot of mail asking me how I came to start a web site about ADD/ADHD, and "Why do you do it?" So, here it is, my story, and James'.
James was what I thought, a fairly normal child. He was a happy baby and never really much of a problem. He was always on the go and up and walking at 10 months. Like a lot of children, he had a lot of ear infections, and like most boys was hard to potty train.
I noticed as James toddled around that he seemed to fall down alot. Eventually, he was diagnosed as having an orthopedic problem with his legs. He's knees were turning in causing his feet to tangle when he walked so James was put into special shoes that he wore during the day which had wedges on them, forcing his knees outward, as opposed to inward, and at night, a bar was attached to these shoes forcing his knees to turn out while he slept.
At the age of 2 1/2 it was obvious that James preferred squealing and noisemaking as opposed to talking, so I began pursuing this issue with his pediatrician. Hearing tests were done and soon he was taking speech therapy at a local clinic. The doctors felt that the frequent ear infections had interfered with his ability to learn how to talk as toddlers learn by listening. James was exhibiting the the signs of ADHD at this time but, I just assumed James was just "being a boy".
By the time James was 3, he had a "reputation". He had problems playing with other children. Older children, including his cousins and older sister refused to play with him and so he spent much of his time playing alone and on the occasions he did play with other children, they were always younger than he was. James was often in trouble with the neighbors and the fighting with his sister was nonstop. My father was the least understanding of all the family members, telling everyone that James was going to be the first family member ever, to go to prison. He felt that if I just beat the kid, he'd straighten up. It got to be that every time I went to visit my parents, the visit deteriorated into a fight over my parenting skills and my lack of willingness to beat the child, and my father was hitting James whenever James was not conforming to my father's wishes. Soon, the visits stopped.
Things at home were not much better. The constant bickering between James and his sister was at a high. James's father who said there was nothing wrong with the childs hearing nor his legs, was now maintaining that there was nothing wrong nor suspicious about the childs behavior either. Instead, I was criticized for my lack of ability to control the child and belittled once more for poor parenting skills.
At this point everything fell apart. James's father would come home from work and unable to handle the amount of attention his children needed from him and unable to cope with the constant bickering and yelling between the two children, me and the children, him and the children, and the arguing going on between the two of us, the relationship failed and James's father moved out. We ended up in the courts due to his fathers refusal to acknowledge the problem and his refusals to treat his son along with other issues. James' dad eventually lost custody and visitation privileges and James would eventually go two years without seeing his dad.
At the age of 4, I was able to get James into a preschool class offered by the public school system. His behavior problems became more apparent and new behaviors arose as he was put into a classroom setting. The diagnoses from his preschool teachers: Psychosis. "You're child is Psychotic". So I went to my pediatrician and was told that the child was fine but if I so desired, he could put me on a waiting list for therapy and was sent home.
At the age of 5, James went to Kindergarten. His ADD/ADHD behaviors became more pronounced. He could not perform simple functions as cutting, drawing, writing etc. He couldn't sit in his seat. He often spent his 4 hours a day in class, laying on the floor under the table, wandering aimlessly through the classroom touching everything, unable to stay on task no matter what he chose to do. The teacher, over burdened with 30 children, had no time for James and as long as he didn't bother other students, was allowed to wander through the class doing as he pleased. Due to the lack of funding in the school districts here, there was no aid for James's class so I took on the role in order to help my son. It was heartbreaking to watch as he never got called upon to act out the little stories that they learned. His papers were never chosen to be placed on the wall, he was never invited to play with the other children, he was never chosen to take the attendance sheets to office and was often left out of field trips because of his behavior. I now had something else to worry about, his self-esteem.
I began pushing his kindergarten teacher for help. She agreed that James had problems. He was functioning way below his age level, so, she recommended him for "child study" by the school Psychologist. It took over 3 months for the school to finally set up a meeting to discuss my son. The outcome, "Lets watch him for a while longer and see what happens." Finally, they gave me a test to take to determine if my son might be ADD/ADHD. I filled out half the questionnaire and his teacher filled out the other half the questionnaire. The school Psychologist told me that any score above 19 is highly suspect that the child suffers from ADD. James scored a 31.
Armed with this new information, I headed back down to my pediatrician seeking help. The Doctor proceeds to tell me that ADD just doesn't exist and that he has NEVER seen a truly hyperactive child. Not only that, the child was sitting in front of him perfectly still, so how could he be hyperactive? He recommended Parenting classes and sent us out the door. Again.
By the time the second semester was over, his kindergarten teacher had had enough. She was already at her wits end with 29 other children, many of which presented her with their own problems. She could no longer tolerate James's behavior and her relationship with him began to deteriorate. We moved to a new school.
James was lucky in the respect that his new teacher was young and enthusiastic and was new to teaching and so, in my opinion, had a fresh outlook. She agreed that James had problems and again, I headed off to the pediatrician. He maintained his previous stance but agreed to humor me by sending us to a clinic that specialized in child psychiatry. After 10 minutes in the Psychiatrists office, myself, my daughter, and my son, came out with prescriptions for Desipramine. Although our pediatrician was concerned about the choice of drug that James had been placed on, he recommended that we continue with it. James did show some improvement on the Desipramine but was still failing miserably in school. At the end of his kindergarten year, James could not count to 10, could not recite the alphabet, nor recognize any letters of the alphabet. So against the schools wishes, I held him back and asked that he repeat kindergarten, and set it up so that James would get the same teacher when he returned for the new school year.
In the meantime, I continued to pursue help for James and got no where. Then came the day that I read in the paper that the Psychiatric clinic that was treating my son and my family was being investigated by the State Attorney's Office for fraud! I immediately contacted the attorney in charge and found that this psychiatrist was being investigated for fraud and had fled the state. I immediately threw away the Desipramine.
The summer months proved to be quite trying. James' behavior seemed to excelerate. He didn't sleep at night and had begun wandering through the house at night while I slept even leaving the house only to be returned by neighbors during the middle of the night. Needless to say, double dead bolts went up, I learned to get by on little sleep and off we went to the pediatrician, AGAIN. This time, we were placed on the waiting list of a reputable child psychiatrist and sent home. The waiting period, 4 to 6 months.
By the time June rolled around, I was at my wits end. James' behavior had gotten more aggressive. He was making his sisters life miserable, she was beginning to suffer as she was always somehow getting "hurt", the neighbors were fed up and I often found myself breaking up fights between James and the adult children who lived next door with things often ending up in a fight between myself and the neighbors who also felt that Jame's problems stemmed from poor parenting on my part.
I had no choice at this point, my son, my family, needed help and it was up to me to find it, and so, I sat down with the yellow pages open to Psychiatry, and crying, I picked up the phone and dialed every Psychiatrist, clinic and institution in the book until I found one that said "we can help you." Within 4 hours, James was labeled as having "acute" problems and was hospitalized in Sutter Psychiatric Hospital where he stayed for 2 weeks and was ultimately diagnosed as ADHD. Not psychotic, but ADHD. He was taught the 1-2-3 Magic program for behavior management, placed on medication, and started in therapy.
It was amazing. The medication made a drastic improvement in James. Suddenly, attitudes changed. My family no longer felt the need to tell me I was a horrible parent any more. The comments about James living in prison all his life stopped and my father stopped hitting James. I was actually looking forward to the beginning of the new school year. It was funny how so many things changed once James was diagnosed. I was no longer "harped" at for poor parenting skills, the family looked at James in a different light, and some how, I felt a sense of relief knowing that James really did have a problem. I wasn't crazy, I wasn't a terrible parent, James had ADHD.
I spent what was left of the summer soaking up all the information I could about ADD/ADHD and put together some materials for his teacher. When school started, I instructed her in the 1-2-3 Magic program, gave her the materials I had collected, and provided her with charts and stickers for the reward/consequence method of behavior modification and made daily contact with her. I even made an appointment with the principal to discuss James' problems, how to handle him and also expressed my concerns about his education and how I wanted him tested for deficiencies in his learning. I was told that day, that James didn't qualify for any testing because of his age and as far as his diagnosis of ADD/ADHD, that information was better left for the teacher as she would be the one spending most of the time with James and then I was rushed out of her office. Then, it happened.
Less than a month into the school year, James had an episode of acting out. He had failed to come in when the recess bell rang and because of that, he was to lose his extra recess for the day. James ran away and began to climb the fence in order to leave. The teacher, remembered what she was told, counted him and he stopped and returned to the classroom. Because she had 29 other child to watch, and because James was obviously upset over his loss of recess time, even though he had complied with her request to come in and sit down, she decided to send him to the office until he had settled completely down. She then requested that the Principal come down to get James and take him to the office to calm down and so the Principal along with the school Psychologist walked down to get pick up James and take him back down to the office.
Now this is where the story goes awry. I have never been able to get the truth from those that were involved that day but some how, the principal and the psychologist got into a position where they were trying to physically force James into complying with their wishes when he hesitated going to the office with them. He wanted to stay in class. Once they got him to the office, they tried to make him sit still in a roll around office chair and became exasperated when he failed to sit still and keep the chair still. At this point, somehow, according to the principal, my 5 year old son commandeered the school office, keeping teachers from entering or leaving the office that had TWO doors, then suddenly made a break for it and ran causing at one point 7 adults to chase him through the streets. They got him back into the office where James proceeded to take all the files off the principals desk and sweep them to the floor. When I arrived at the school to pick James up, I was ushered into the office where I found James on one side of the principals desk and the principal on the other. She immediately began telling me what happened and how they had been unable to reach me. After I started James to work cleaning up his mess, I began to question the principal about her actions. Why didn't she call the teacher up to take charge of him? Why didn't she call the childs grandmother? Why didn't she use the 1-2-3 Magic program? etc. Her response was, the teacher was busy, she didn't know about the 1-2-3 magic program, and she never thought about calling the childs grandmother. Of course she didn't know about the 1-2-3 magic program, she didn't want to listen to me when I came to see her not 1 week before this happened! And so, the police were called and they came and talked to James, and James was suspended for one week.
I was extremely distraught over this incident. Not only was I horrified that my child had been treated in such a manner, but I later came to possess information that proved that I was not getting the truth from the principal about her role in the series of events that took place that day.
This incident changed James' life and mine. It is now, one of the most important things to have happened to us. Due to suspension, a meeting was scheduled with the powers to be at the school, and I contacted an outfit here in California called Protection and Advocacy who sent me a book containing all the laws and regulations pursuant to special education in the state of California and section 504. I began contacting everyone I could, the board of supervisors, the district superintendent, the state board of education, the local newspaper and t.v stations. When I arrived for the meeting, I took a very dear friend with me, Christine Craft and proceeded to raise hell. I was mad as hell about how my son was treated and I suddenly found myself going from parent, to "warrior".
What I found out from my book of Laws and rights to special education made me ill. I had been told that my son didn't qualify for special ed testing due to his age. I was left hanging for months trying to get the child study team to take action and help my child and right there in front of me, in black in white, the laws stated clearly, that in order to have your child tested for special education, all you need to do is request it and that your child is eligible for special ed support from the time of birth! I couldn't believe it! Why didn't the school offer me these services when they knew I was trying to find a way to help my child? I was furious! So then it started, the road to where James and are today. At that meeting, I was able to get all the testing I wanted. James was found to be learning handicapped and was placed in resource learning for the remainder of the year. He got a wonderful new teacher that was understanding and helped him know what it was like to feel successful. The following year, armed with my "Bible" of laws and rights, I was able to obtain Learning Handicapped Classes for James where he is now in his second year. He is now writing, doing his math and learning to read. He's no longer the child who creates problems but is the child who spends his time helping the other children with their work and instead of starting fights, he tries to stop them.
While his father spent 2 years in denial about James' disability, and refused to learn about ADD/ADHD, his father now does his best to comply with James treatment program and currently gets to see James every other weekend. James and I spent 2 years in therapy together learning how to deal with our issues concerning ADD/ADHD.
For a long time I was very bitter about how my son was treated in the public school system and I found it very hard to forgive the principal and the psychologist who mishandled my child that day. I also learned that my schools district did not have any requirements as far as teachers taking any training for ADD/ADHD students. In fact, I was told that it was left up to the teachers themselves as to whether or not the chose to educate themselves on ADD. I also arranged for CH.A.D.D. to go to my son's school and educate them about ADD, but the school declined. Since that time, I have learned that almost every parent who has an ADD/ADHD child has a similar horror story. I now spend my time keeping this web site up, helping other parents get services for their children from the school district, and volunteering in my son's learning handicapped class.
What saddens me is that stories such as mine are a dime a dozen, and many are far more tragic than mine! It seems because ADD/ADHD isn't "visible" like other handicaps that others choose to ignore the fact that it exists and instead persecute the child and the parent. I believe we can change that. Knowledge is POWER! Someday I hope there will come a time when we no longer hear remarks like "when there's a telethon for ADD, then, we'll recognize it". ADD/ADHD is very real and it's time we stood up and armed ourselves with as much information as we can so that we can make things better for our children.