I went down stairs at my parents house today, being nostalgic, and came across this paper that my mom wrote about living with children who have disabilities, back in 1991 when I was 12 years old. To me it is really telling about her difficult journey. I feel like posting a couple of excerpts.
Mom: Jonathan has not been an easy child. It is very hard to teach him anything, you have to go over it again an dagain. . . He has litte "ticks" that at times are very hard to deal with. (Some of which are particular facial twitches and hand twitches). . . One of the hardest things we have to deal with is that Jonathan does not like crowds, he gets very nervous and anxious when we are around big groups of people and if we have to wait for very long we have a big problem.
This is very interesting to me, why? Because I was living in my own silent hell of anxiety over "big groups of people." I had a lot of anxiety in these situations and I dealt with in different ways sometimes by hiding, sometimes by sitting down and being silent, sometimes by finding some of my cousins (people who were familiar) to play with, ie. I dealt differntly than Jonathan. My mom didn't notice that there was anything wrong with me because Jonathans symptoms were very pronounced. He would start stammering, twitch, and get physically nervous. I'm not saying that I am mad that she didn't notice, it's just interesting that my experience has echoed my brothers.
My mom mentions the use of forceps in delivery. It is terrible that she has not had an explaination for why my brother is Autistic.
"Jonathan's infancy was uneventful, he walked and started to talk at the normal times. He was almost 3 years old before we suspected anything might be wrong with him. Jonathan was talking, but very little. He would not ask for anything, and his communication was behind that of most 3 year olds. We did not suspect autism at the time because Jonathan was a loving child who loved to be held and played with."
(That has disappeared, you can't hug Jono right now.)
"We were advised to contact the Early Childhood intervention agency to have him tested. It was found that Jonathan was about 1 year behind most 3 year olds in every area they tested. . . During this time (that he was in kindergarten) Jonathan started to show unusual behaviors, for example, he would get on his horse in the middle of the night and rock for hours. We took him to the Doctor and he suggested that he might be hyperactive and he put him on Ritalin. This did not help and Jonathan became uncontrollable and cried and screamed all the time. We then took him off the Ritalin. His behavior did not improve greatly, but he no longer screamed and was more controllable. About a year later Jonathan started to have blackouts, you could call him and yell at him and he would not respond. One day he was in the neighbors driveway, they wanted to leave and they honked at Jonathan but he paid no attention, it was if he did not hear anything. We had his hearing tested, it was normal. During this time we took Jonathan to a state run clinic for handicapped children. He saw a neurologist and a medical doctor every other month. We had several tests done, including an EEG, Cat Scan, MMR, and several blood tests. It was determined that Jonathan had irregular brain waves and a tendency to have seizures (mainly in the form of blackouts). He was then put on dilantin to control his seizures and his behavior improved. There never was an actual diagnosis given to Jonathan's problem, they mainly labeled him intellectually handicapped with autistic behavior."
OK, this bit of information is very interesting to me as well. First of all, I had two seizures as a young girl and they did an EEG scan on me as well, I remember it. I was also put on dilantin but they took me off of it after a short period of time. (I kept wondering why because I felt there was something wrong with me as well). Also, when I was eatting so much gluten two years ago, to become "healthy" with bran muffins I blacked out frequently and I have had spells of "blacking out" a lot in my life.
This is what she had to say about me, "When Jonathan was small he was a good playmate for our duaghter A. 1 year younger. As they got older however Jonathan kept more and more to himself and did not intereact with the other children. A. became Jonathan's protector and guide, she would take him to the church activities and make sure that he was taken care of. A. is more like the oldest child instead of the middle child in our family. A. has never shown any signs of being embarrassed by Jonathan in anyway. A. has alway's seemed to understand Jonathan's handicap and it has not bothered her too much. Jonathan has always gotten along very well with A."
Jonathan has also been on an "experimental" drug called fenfloramin, which my mom claims helped to raise his IQ by 20 points over a 2 year period. I don't know what other types of drugs my brother has been on and I don't really know if fenfloramin helped him, hurt him or what not. My opinion at this point is that most drugs are terrible substitutes for a balanced diet free of allergins. Buy my opionion has been developed after looking at the effect drugs had on my family's life. My mom was searching for help and drugs are what she got. My other little brother Evan has also been on Ritalin I remember well how crazy it made him. My own experience with pharmacutical drugs has been terrible, every single drug that I have taken has had a terrible effect on me. Prozac being one that comes to mind immediately. When I was 14 or 15 I finally convinced my mom that I was depressed and the doctor prescribed Prozac. I took it one time, had a psychotic episode where I had a strong desire to kill myself and somehow made it until the drug wore off. I immediately threw the rest of them away. I have been given drugs to "reduce" the amount of water in my body to maybe "reduce," the dizzyness that was ever present and was due to food allergies. I have been given nazal spray's to get rid of the ringing in my ears, those were terrible. When I was bleeding from a miscarrage a doctor gave me some strong kind of pain medication that made me black out. Even the tylenol and ibuprophrin that I used to take habitually have been bad experiences. Every cough syrup, every mentholatim drop for sore throats, every single medicine that I have taken has not served me half so well as natural medicines and real food. Real food having had the most beneficial effect on me.
So anyway, that's my take on things. I don't blame my mom in the least, she is a strong and wonderful woman who has done the best that she could with the information and circumstances given her. But I do think that there is hope out there and a better way for all of us grasping for answers to the problems that are plauging our bodies.