Clayton's Story

19 years ago my son Clayton was born. His induced birth was difficult, and with the aid of forceps, he was born blue, (cyanotic) unresponsive and needed to be resuscitated. He was brought around, though apgar scores were low for several days. His weight was good - nearly eight pounds. No one heard Clayton cry for three days.

In the weeks that followed, my baby was a very happy, easy going little guy, who nursed well, gained weight and slept well. He was alert and never fussy. He was a beautiful blonde-haired, blue eyed cherub. He loved the sound of his own voice. Little did I know, at 19 (and how extremely naive and trusting) what we were in for...

Clayton's first DPT shot was administered at 8 weeks. Within hours, I could not hold him, try as I might, for he was arched right over backwards. His screaming was non-stop, at an unnatural, terrifying pitch I had never heard before. I called our family pediatrician at 2 a.m. asking if I should bring Clayton in to the ER. No, I was told, this was normal, and it was suggested to me that I should just let him 'cry it out.' I was then told that Clayton would be fine, and that I should leave him be and go get some sleep. This went on for 16 hours! Still another call, with me more and more frantic. Being told to relax, as my hysterics could be exacerbating the problem. I was exhausted and fearful, and once again, asked if I should bring my son to the hospital. Again the answer was no, and again, told to just go to bed. Sleep! Though my mind and body were screaming for just that, sleep was the last thing on my mind. All I could do was sit on the bed and cry, I'd never felt such a keen feeling of helplessness, and isolation in my life. There was no family to call for help - the Dr's were all I could count on to help us... or so I thought.

Clayton grew very quiet. At this point I was able to encourage him to nurse for perhaps a minute, before his little body shuddered, and he fell into a deep sleep. His limbs were flaccid, and limp as I changed him and placed him into his bassinet.

Too nervous to sleep, I paced the floor, chewing my nails, still unsure as to whether or not Clayton was really okay. Sitting on the edge of the couch, I stared into the bassinet. Not long after he had fallen asleep, his skin turned gray, and his lips blue. (Again, for the second time in his short life - cyanotic.) As I watched, Clayton stopped breathing. I couldn't believe this was happening! (SIDS??) I nudged my son, and he gasped and began to breathe again. It happened over and over again. I had been without sleep at this point over 24 hours, and wasn't sure my judgements were to be trusted. I trusted my pediatrician implicitly, blindly. I called him yet again, this time in total hysterics. I managed to explain to him what had happened. I told him how nudging the baby, seemed to get him breathing. Again, I questioned whether my son should be in the hospital.

Now, suddenly I'm told I should not go to sleep, in spite of being sleep deprived more than 24 hours. And I should sit nearby and watch Clayton in the event he stopped breathing again. Should it happen, I should continue to nudge him each time. Again I was told NOT to bring him in, that I was capable of dealing with this on my own. STILL told this was a 'normal' reaction. I don't remember falling asleep, but when I woke up, it was many hours later. I was afraid to look. Clayton was still sleeping, (he would sleep 18 hours) and though some of his color had returned, he was still unresponsive, unable to nurse. I called the Dr once again and told him I was going to bring Clayton to the ER. No need for that I was told. My son's unresponsiveness was attributed to his exhaustion. Just let the little guy sleep and you do the same. I was told I was far too uptight. I had never seen anyone close to death before, so I had no way to know if this was the case with my son. I wondered if perhaps I was being hysterical. And a physician who has done this simple procedure to thousands of infants would know, right???

In spite of all he had been through, Clayton survived, though his personality was never the same. He was much quieter, not cooing nearly as much as prior to his immunization. Also sleeping a lot.

Weeks later, according to schedule, and although I was hesitant, we were back at the pediatricians office for Claytons next routine DPT vaccination. The reaction this time, was different. He stared, and became tired and weak. I felt this was a far cry better than the first time. Within 24 hours it all changed. Clayton became violently ill with a high fever, projectile vomiting and explosive diarrhea. I brought him to the pediatrician who quickly diagnosed an ear infection and prescribed an antibiotic. And still Clayton continued to deteriorate at an alarming rate. I knew enough about dehydration, to bring him to the ER, where we were given a new script - as well as assurance that Clayton would improve from hereon... I was also told (again!) to relax, and that my nervousness could make the situation worse. I wondered to myself if this wasn't some sort of standard, pat response for all young single mothers. I sure seemed to hear it a lot.

At home I started Clayton on the new medication. We were up most of the night. As fast as I'd get a diaper on him, he would soil it again.

To add to my distress, his bottom was literally coming off in layers on the wash cloth. His cries, as I repeatedly had to was his bottom, mingled with my own. I'm not sure who cried louder. I called the doctor and was advised to give him Pedialyte, a rehydration formula. I was also told to stop with breastfeeding and only give the Pedialyte, which Clayton refused to accept. We resumed nursing. One call later and I had about had it. I was told that something in Clayton's room or crib was scaring him, making him sick. In my naivete and frustration, I removed his crib mobile, all the cute little stuffed animals on the dresser nearby, stripped the walls of their decor, and put plain white sheets on his crib. I remember thinking, "What am I doing? This is nuts!!" Still no improvement. My last phone call to the Dr, whereby I was accused of being a hysterical mother, and - it was my inexperience that was making my son sick!

Now I'd had enough and I would never, ever, ask if I should bring my son in again. Later, at the hospital I was told Clayton's illness was a result of a severe candida infection caused by the antibiotics. He was admitted. Finally!

All day, I'd rock and nurse my son until I left at 11:00 p.m; leaving pumped milk for a 2:00 a.m. feeding. No cot was ever offered for me to be allowed to stay around the clock with my seriously ill baby. Late at night, exhausted, I would walk home to try to get some sleep. Only to return early the next morning to be subjected to cruel comments from nurses. The implications were that I was using the hospital as a babysitting service, so I could go out and party!! One or two kind nurses did encourage me to go home and get some sleep, but once at home I'd fall into bed into a fitful sleep - knowing that my son was not in his room.

I saw little improvement. Clayton still had dark circles under his eyes, his bowels were still far too frequent, and he'd lost too much weight. Finally after a week I was told he'd made it through the entire night without a bowel movement. I still thought he looked unwell, but they said I could take my son home. We got home, sat in our rocker and Clayton nursed. He fell asleep and I put him to bed. Several minutes later, I heard some strange noises coming from Clay's room. I went in to peek on him, he lifted his head and smiled weakly at me. Then I noticed the mess. I wrapped him up 'as is' and took him right back to the hospital. A new doctor in the ER took one look at my little guy and rushed some tests on him. I was berated for 'letting it go on for so long,' and told we were lucky to get there when we did. The doctor was shocked to learn that Clayton was just released an hour earlier!

Test results came back showing a gastrointestinal illness, caused by E.coli bacteria. The docotr condescendingly asked ME how it got there? I was so relieved to finally have some answers. There was no way for me to qualify that! Or even comprehend (at the time) what exactly he was getting at. All I knew was that I'd nearly lost my baby, and now I could anticipate his recovery. Not until many years later - while researching vaccine reactions, would I come to grips with what this doctor meant by asking me where the bacteria came from. Appalled I was, to learn of the many mothers who, like myself - were accused of such horrors. Although I was not straight out accused of it, I might as well have been, and that question made me feel extremely humiliated and disgusted all those years later.

In spite of my questions and objections, Clayton was kept on a very strict vaccination schedule. Most of the first two years of his life were spent in the ER, or a doctor's waiting room. We saw a specialist who inserted tubes in Clayton's ears. They fell out. Our medicine chest was overflowing with medications to treat Clayton's constant ear, nose and throat infections. Another shot (MMR) at age 2 caused Clayton's leg to swell so badly the injection site had a lump as big as a baseball. He could not walk for days, as well as having the usual reactions of fever, ear and throat infections. These are examples of the many 'normal' reactions my son had. None were ever classified as vaccine reactions. I was told when I questioned the possibility of them being vaccine reactions, that they were NOT, but only mere coincidence. Later, prior to another routine vaccine when I questioned yet again the reaction factor, I was told that there was nothing in any of his files pertaining to any problems associated with vaccines. I also found that NONE of my middle of the night calls were ever documented. I assumed that to have a reaction documented, a severe reaction had to take place right in the doctor's office. Since I have begun my quest for information, I have discovered that this is not necessarily the case, as I've read about infants who collapse into coma (now THAT'S severe!) on the examination table, and the parents told it's just a faint and that the child will be fine. In most cases I read about, these infants were not fine. No explanations were ever offered to us, save to say that I somehow caused his illness.

Clayton's night terrors began at the age of 6 or 7 months. Shrill animalistic screaming at all hours of the night. He'd seem to panic, and each time the screaming would continue for about 20-30 seconds and stop abruptly, as he'd go back to sleep, only to have another episode within an hour or so. Sometimes he would frantically crawl from one end of the bed to the other, as he screamed, then would collapse. It could happen anywhere from 7-10 times per night. No explanation (surprise!) from our doctors on this either, or the constant twitching of his nose, clicking in the back of his throat, or the stretching open of his mouth, so wide you could hear his jaw crack, and he always had split lips. He is very obsessive compulsive, always tapping something rhythmically, repetitiously. In school he was constantly in trouble for these things, as well as repeatedly throwing himself on the floor. I understood too late - that he was unaware of throwing himself on the floor. I had no idea, until many years later that Clayton had Tourette's Syndrome and that night terrors are usually the first sign. It's very strange to me today, to listen to my grown son scream out in his sleep. He also has severe AD/HD, severe learning disabilities, OCD's and Raynaud's. Worse than any of these is the fact that Clayton is also Oppositional Defiant. Sometimes, depending on his Tourette's, he may require up to 20 hours sleep. This is because of his night terrors. He is exhausted. Even aside from the screaming, he never sleeps peacefully, and thrashes around in his sleep a lot. Drug treatments do not work for Clayton. Treating one disorder is cause for another to worsen, and there are no drugs to treat all of his disorders. We could get no answers from the medical profession, until we were forced to put him in foster care. I have also learned, through my research that Tourette's is encephalitic in origin, caused by swelling of the brain. Now, when did that happen?

Very early on Clayton started stealing from schoolmates. Whatever anyone else had, be it food or toys, appealed more to him than anything he had. He had all the latest toys, and I knocked myself out trying to accommodate his food allergies. Nothing worked in that respect for very long. I could not put a sign on his forehead telling people not to feed him. Food dyes and preservatives had horrible effects on him, to the point of violence - punching or kicking walls, and breaking things. He once bit deep into his sister's back after a teacher gave him candy. Ordinarily he was not violent towards his sisters, though he'd often tease them mercilessly. He had no friends and no self worth, no matter what we did to help him fit in. He lacked enough focus to follow rules in organized sports, though he was not aggressive towards other children. Just different. He did his own thing and found excitement, (at twelve years old) in sniffing gas, stealing and breaking into schools and homes. Our family life was suffering terribly - despite our repeated attempts in family counseling. I was married and had a third child by this time. My husband tried desperately to bond with Clayton as the son he never had. Fishing trips, basketball, bug hunting. He did Clayton's will and tried to make up for what Clayton lacked not having friends.

Once in foster care, people jumped and bent over backwards to diagnose my son. They needed to have clear-cut explanations as to why our child was being placed, and this I can understand. Many times after Clayton reached age 12, we've had no clue as to whether or not he was still alive... he would disappear for days at a time, with police and ourselves out searching everywhere to find him. He would turn up - seemingly unaware of the distress caused by his disappearances. It was gut wrenching for me as a parent, having a child who was so much of a risk-taker. He could not understand why I would get so upset when he'd climb out his second story bedroom window, or walk across the barrier of a bridge. He was absolutely fearless.

I learned - quite by accident (too little too late) that Clayton is vaccine reactive, just after his fifth birthday. The risk runs in my family. My brother was vaccine damaged as an infant, and was autistic. He developed encephalitis shortly after his pre-kindergarten MMR vaccine. My parents were told it was from a mosquito bite - in mid October, (cold where we lived) and not in a third world country.

As an infant my brother wore out a Lazyboy rocking chair. I recall clearly, how he'd sit on the floor and roll a battery back and forth - while he rocked rhythmically for hours! He could speak only one word at the time - Volkswagen... Strangely enough, the farther away from his shots, the more normal he became. The autistic label was eventually removed, however he is still somewhat disabled, though functional.

My second child has severe milk allergies. Ironically, she had only 2 shots before ending up with the same gastro illness that Clayton had. I knew there was grave significance with her illness, and although I still had not figured out a way to avoid the shots, put them off, I did! Turned out those were the only shots she had before my getting educated. Children with milk allergies are at a far greater risk of vaccine reactions. My daughter was very fortunate and suffered no long-term effects. A bright, gifted artist, she does very well in school. She aspires to be a French teacher someday.

My third child, a daughter, has never been vaccinated. This child has been blessed with robust health, which we attribute to her being non-vaccinated. She is also a very talented artist, an honour roll student and is in a class for gifted children. She has been to a doctor only once in her life, to verify that she existed - after being born at home with midwives. She has aspirations to be a veterinarian, as well as a children's book author/illustrator.

Myself, I suffered a severe reaction to a tetanus vaccine. Within one week after the shot, I became violently ill with a severe gastric flu. I became so weak I could only crawl to feed my children. For 2 years after I could barely get out of bed. In the mornings I would get up, feed my children, collapse on the couch and go back to sleep. As a single parent at the time, although I kept an ear on the situation, I feel that my children were robbed of me during this time. I have suffered ever since, from Chronic Fatigue Syndrome, and because of various mysterious symptoms, I am looking into the possibility of fibromyalgia.

In Ontario, unvaccinated children can attend school, although parents are required to submit a legal, notarized form that allows exemptions for reasons of conscience, religion, and in rare cases, medical. The form is available at the Health Unit, and requires a legal stamp from a lawyer or paralegal at a minimal cost.

Despite our legal right to exemptions, the first few years were a nightmare, and we were constantly harassed by the school board. Time after time they demanded us to produce proof of immunization, or the exemption papers. I'm sure they must have six copies by now! The last few times they contacted us, we told them to stop harassing us and look in their files, for they surely had more copies than we did. They have not bothered us about it for years. Occasionally the topic comes up - and I speak about the nature of our exemptions. I've actually had other parents tell me that my children are a threat to their children's health... if only they knew... I'm treated adversely - as though I were against them personally for some reason. I'm really not even that outspoken on the matter. Yet. But don't get me going...

Repeatedly I read articles stating that many parents are making uninformed decisions, and not vaccinating their children. Over the years, I've met with many families, who have come to the same conclusions as I. They have also put in their fair share of time investigating the controversial issue of vaccines. I resent very much - being called uninformed. Myself, I am very driven on this matter. I didn't just wake up one morning and decide not to vaccinate my children. I have spent thousands of hours reading, looking, probing, digging for answers. I had an interesting conversation with a vaccine expert, who has authored a very well written (internationally acclaimed) book - she informed me that she had visited with a class of medical school graduates. She posed the question to them on how much time they spent in class learning the theory of vaccines. I was pretty shocked to learn that it was under 10 hours, and anything else they happen to learn - is on their own time - if they wish. Really, they know little more on the theory of vaccines than the average person. To me, this is scary. We are putting our children's lives in their hands.

From our earliest recollection, we are told me must get our shots or we will get very sick. This mis/information is repeated from one generation to the next. The indoctrination is embedded deep into our psyche, and it is extremely difficult to break free of it. Parents must educate themselves, not just rely on information which is provided by the pharmaceutical companies - whose motives are purely profit-driven. Much time and money seems to be spent researching why vaccines are a good idea. Precious little time and money seems to be spent researching the negative effects and long term ramifications. Why not spend as much either way?

For our children's sake - don't just read about the benefits of vaccination, read also how the risks far outweigh the benefits. Many excellent books have been written on the subject, and are available at local libraries and bookstores. We must not allow ourselves to succumb to bullying scare tactics used by so many doctors today.

OUR CHILDREN. OUR CHOICE. OUR RIGHT.
What will become of Clayton?? What sort of aspirations might he have? He has been incarcerated for his involvement in an armed robbery at age 13, car theft and petty theft. He has not regularly attended school since grade 7, and is now attempting to qualify for a permanent disability benefit from our government. Social Services has requested for Clayton to visit a specialist and be re-diagnosed with his disorders. Due to critical physician shortages in Ontario, there are no doctors available to do this - not even in neighboring cities. They claim they will give him money to take a bus to another city to see a one.

Clayton will be frustrated and confused by what is being asked of him. The social worker I spoke with tells me that it is inevitable that Clayton will have to fill out a job search, in spite of barely having the ability to print his own name. She admitted that she could see that he has an obvious disability, by his application for assistance. (It was a mess!) She then informed me that Clayton will eventually be cut off any assistance unless he is able to see a specialist to be re-diagnosed, or look for work and fill out the jobs search papers. I advised the woman to contact his old specialists here, rather than put the onus on Clayton to prove his worthiness to a disability claim. I can now understand why there are so many homeless. Our government needs to understand that by partaking in this billion dollar industry today, they will be paying for it in some way shape or form tomorrow. The cost of paying for long term disabilities, health care and prison, most of which is absorbed by the taxpayers of this country.

Clayton has a very loving nature at heart, and - like most people is looking to be loved and accepted. He spends a lot of time taking care of his ailing natural father. He has no steady girlfriend, never went to a school dance, will never drive, at least not (!!??) legally, and cannot hold a job. Upon first meeting Clayton, he seems polite and well mannered. One of the life skills we were able to teach him. He's also strikingly handsome with a great build. Young women tell me he's very pleasing to the eyes. Shortly thereafter though, it is apparent that this young man is different; by the clicking in his throat, the rhythmic roll of his eyes, and the steady, tap, tap, tapping of whatever he manages to get his hands on. Clayton's main goals these days are to stay out of prison, for he has been in all three phases of incarceration. Adult prison was the worst, he says, and he never wants to go back there. He's lasted exactly a year. We tell him we believe in him... and to ourselves - we only hope he can make it longer.

The most difficult aspect of parenting this young man, for me, is to step back - to allow my higher power to take over. My husband and I pray daily for Clayton's safety. I pray for a miracle. I've also prayed that this nightmare to end - that I'll awaken and know it's all just been a bad dream after all. That really all those years ago, I took a stand for my son and refused to allow the assaults on my son to continue... And years later my handsome boy will walk through the door, girlfriend in tow, telling me about the courses he's taking in college, how he's fixing up his car, his hopes and dreams for a decent future... All the WHAT IFS AND IF ONLY'S??? Believe me, prior to Clayton's leaving us the last time, (we have taken him back home several times, since his being in foster care, and in between jail time) we had exhausted all agencies in our area trying to get help. There is simply nothing left. And at 6 foot 3, 170 pounds, we can no longer sit on him to make him do anything. His life is in his hands now as well as our Creator. Someday, perhaps - maybe simply staying out of prison won't be enough for Clayton... He'll demand more from life, and somehow find the strength to give it all he's got. I hope this is true.

Prisons everywhere are full of Claytons. So are the streets. This story had to be told. People need to know why.

As I read over what I have written here, a huge lump forms in my throat, and I hang my head and cry. My son called two weeks ago - collect. No one was here to accept the call. I'm not sure what that means, but I am unable to reach him, for he has no telephone. I don't know if he called from prison, a hospital or just calling to say hello, as he will do on occasion. No parent should have to suffer these nightmares.

End of story... Or is it?