Welcome. JEREMY’S JOURNEY has received numerous RAVES for being informative storytelling and insightful historical events. We invite you to pull up a comfortable chair and explore JEREMY’S JOURNEY through a mother’s eyes.
Don’t miss out on receiving a complimentary copy of JEREMY’S JOURNEY from our website, ….coming soon.
(From left to right-Jaden, Jeremy, and Tristan)
Thank you GOD for a colorful vision. Thank you Sylvia for the gift of creativity. Thanks Coleen for planting the seed of courage and leading by example.
My immediate family members, board members, and associates are amazing, courageous, and chosen personally by GOD. The unconditional efforts that everyone has shown to me. People, total strangers, have gone above and beyond my expectations, but have kept my focus clear on what I wanted to convey to the world.
This story, mini series, journey… is one that starts out rather simple. You are taken into a world that is rather different, complicated, and very challenging. I drafted JEREMY’S JOURNEY because I wanted the world to understand just how one mother to another mother survives everyday in the life of a child, teenager, adult living with AUTISM SPECTRUM DISORDERS. Please, if you get nothing from this story, please take with you the understanding that “people are people” no matter what their condition may be, rich/poor, where they live, whatever their nationality may be, or whatever their religion may be.
On the date of February 9, 1989, it was without question one of the happiest days of my life. This is the day that my husband and I had the joyous blessing of our son, Jeremy being born into this world. This is also the day that once Jeremy was placed into our hands; we promised that we would always be there for him, no matter what. I am sure that other parents made this similar promise at birth. Now, please let me state that I am not a professional author or writer, but what I am is a mother who will go to the end of the earth for her children.
I would like to share with you the miraculous journey of Jeremy. Jeremy, when he was just a little baby, was rambunctious, curious, and wanted to run before he could learn to walk. It was without question, that we as parents thought that our hands would be full with Jeremy.
For most children, at age of 2 years old, the medical field had a description for most kids that did what Jeremy was doing. It was labeled as the “Terrible 2’s”. However, unknowing to us, looking back today, there was a pattern growing with Jeremy’s actions. Jeremy was a happy child, and embraced learning certain things very well, as we thought. However, after placing Jeremy in several daycare facilities, over a period, from the age of 2 – 6 years of age, he was in and out of 22 daycare facilities. Now, I know what you are thinking. Why in the world would one small child be moved around to so many daycare facilities in such a small amount of time? According to most daycare directors, they stated, “Jeremy is more than what our facility can handle.” I even recall one particular time; one of the daycare facilities waived their fee and reimbursed us back if we could take Jeremy out of their facility, immediately! In certain situations, this could be considered rather funny. However, when you come to realize that something is wrong, but as young parents, no one was able to direct us to what was going on with Jeremy. A week later, we placed Jeremy at another daycare center. This daycare was a new daycare center that had just opened its doors. Jeremy was their fifth child that they had enrolled. We explained to this young director about Jeremy, but she was more eager to accept Jeremy despite what we informed her of Jeremy’s history. She informed my husband and me that she would be able to work with Jeremy, provide patience and understanding, and encouragement for him to express himself. As she turned away from us and smiled at Jeremy, and explained to Jeremy all the wonderful things that he will be able to do at the new center, Jeremy smiled back at her and looked at us. At that moment, my husband and I looked at each other and shook our heads in despair, knowing that this was not going to last long. Even when we got back into the car and drove away, my husband indicated to me that I might want to continue looking for another daycare facility.
We could not relate this continual behavior as the “Terrible 2’s”. Especially, since Jeremy was 4-1/2 years old at the time. We consulted with each other about Jeremy’s behavior and spoke about this situation affecting our marriage, and secondly, not giving up on Jeremy. Therefore, we have tried to educate ourselves, despite what was being told to us from Jeremy’s Pediatricians. Over the period of years, as Jeremy began to get older, we noticed a change in his pattern. He went from being withdrawn, having sad days, and having expressions of anger and frustration from doing the simplest tasks, and just communicating. As a mother, I made some decisions to quit an Executive Administrative Position so that I could be a stay at home mom. My husband was supportive with me opening up my own daycare center, so that I could spend some quality time around Jeremy. I felt that Jeremy could be acting out since we were working so many hours away from home. While working in a daycare center, I had a first hand experience in watching kid’s reactions and how they interact with one another. As time went on, Jeremy reached his teenage years and his condition progressed and tended to get worse. It was not until one day that my husband entered into his bedroom and he noticed that Jeremy was playing his music very loudly. We spoke to Jeremy’s Pediatrician regarding the matter at hand, about what we were going through with Jeremy. No matter how many times we emphasized our concerns regarding Jeremy’s behavior, his Pediatrician assured us that this was a normal growing stage for a child of Jeremy’s age. At this point, with the information that the Pediatrician gave us we continued on raising Jeremy in a normal standard way. Jeremy attended the new daycare for approximately four weeks. During that time, the director started to gradually report to us various incidences that came up. For instance, Jeremy following directions, his attention span was horrible, and being more mischievous. We asked her everyday that she brought something to our attention, if she was going to dismiss Jeremy from her program. However, once she started to gain more children into her daycare, she started to change in her mannerism. She was more abrupt in her tone to us. Which in turn made me realize that it was just a matter of time before she would inform us that Jeremy would have to leave her daycare? That upcoming Friday, it was at the end of the day, we arrived to pick Jeremy up and the director met us at the door. At that point, she said those words that we have heard so many times before, “we need to talk.” As we looked over in the corner and saw Jeremy in time out. We sat down with the director and she began to inform us of a list of things that Jeremy did in the eight-hour span that he was there. From being disruptive with other kids while trying to eat and at naptime, not following instructions, and not wanting to share or participate with other kids. She also stated that when she placed Jeremy into time out, he was not able to sit or stand still for the four minutes that he was there. She then went on to explain that she did a method of time out where she sat down with Jeremy and facing Jeremy and asking him not to move. She stated that Jeremy did do just that, however he kept starring at her and she began starring back him. In that little time, Jeremy began to rotate his eyes back and forth. She stated that she began to rotate her eyes back and forth, which in turn made her develop a migraine headache. She came short of saying that she has never experienced a child like Jeremy in her time of childcare. Therefore, she would not be able to accept him back into her program. She went on to say, “good luck and I hope that you can find some help for Jeremy. She said that we might want to consider having his Pediatrician put him on Ritalin. My husband and I must admit that we were becoming offended that someone was starting to stereotype our child as being mentally challenged. However, we must admit that like any other parent you do not want to agree that your child may have a serious medical condition. Now looking back, we wish that we were a little bit more educated at the time to know what was going on with Jeremy.
As I stated earlier, Jeremy was in and out of so many daycare facilities it was if he was a military child moving from state to state. Not to mention, due to his condition how many times my husband and myself job was on the line, because of our attendance. Being a parent in this type of situation puts a great deal of stress on a couples relationship and marriage. Two things that Christopher and I agreed upon, was first, not letting each other be angry and not go to bed crying. Jeremy had indicated that his relationship with his girlfriend had ended and that nobody loves him. As we tried to calm Jeremy down, we noticed that Jeremy’s hands tried to move closer to a pair of scissors that were at the edge of his desk. Jeremy stated that he wanted to end his life by picking up a pair of scissors and running them into his chest. My husband intervened by putting his hand between the scissors running into Jeremy’s chest and as we wrestled him to the bed, while at the same time prying the scissors from Jeremy’s hands. We explained to Jeremy that life is not that bad, and have come to realize right at that moment we needed to seek professional help for Jeremy. Therefore, we immediately convinced Jeremy to get in the car with us and we drove him to a local children’s hospital. They evaluated Jeremy and at that moment, my husband and I felt like we had done something wrong because the doctors were asking us questions as Jeremy was in an abusive household. No matter how many times we expressed our concerns about Jeremy’s conditions, it appeared that the doctors and interns were inexperienced and that the hospital was disregarding our concerns. The attending doctor and interns were inexperienced when it came to mental conditions and we felt as if our concerns about our child were being overlooked. They came in with their final analysis; they were going to release Jeremy. At that point, we requested and persisted on them having a Psychiatrist to evaluate Jeremy. We explained that since Jeremy took drastic measures to attempt too harm himself, that if they dismiss him without any further expert evaluations…they will be held liable if Jeremy succeeds in doing bodily harm to himself. They left the room for a period of fifteen minutes, and then they returned to our room and stated that they can call in an expert psychiatrist that is on call, who can come in and evaluate Jeremy. Once the Psychiatrist arrived, introduced himself, and explained that they viewed over Jeremy’s case notes, but they wanted to speak with Jeremy, by himself. Since Jeremy was sixteen years old, and in the state of Kentucky, it does not require parents to be present in the exam room with your child, we reluctantly agreed to step out while the Psychiatrist spoke with Jeremy. He was in there with Jeremy for approximately thirty minutes, which to us seemed like a lifetime, they called us back into the room and explained to us that Jeremy has some issues that have been manifesting inside of him for quite some time. They asked him a simple question if he will continue to do harm to himself, and at that time, he told the psychiatrist that he felt as if he would. So, at that point, they stated they would not feel comfortable to go home or leave the premises, and the psychiatrist asked if he could admit Jeremy for further observation and testing that could possibly take up to a week or two. At that time, we agreed to have Jeremy admitted. The psychiatrist asked us not to visit Jeremy for forty-eight hours so that they could do the separation period with him. The psychiatrist explained that this allows the patient to open up and speak a little bit more freely. A week had passed and one of the attending physicians had contacted us and asked us if we could come in and speak with them regarding some things that they have discovered with Jeremy. We immediately agreed to come in, and met with a staff of four people who stated that they had thoroughly evaluated Jeremy and have come up with his diagnosis. They explained to us that they gave him a series of test, such as competency, emotional, IQ, etc. They also explained to us that even though Jeremy may seem high functional, he suffers from Autism. Now, at that time, my husband and I must admit that even though we have heard of the word “Autism“, we were not up-to-date about Autism. Therefore, the doctors explained more about Jeremy’s condition to us. They stated that Jeremy suffered from a Spectrum Disorder of Autism, Bipolar 1, and ADHD. We asked the doctors if they could explain to us in detail a little bit about each diagnosis and how this diagnosis will affect Jeremy’s life. We also asked the doctors, if there was something in Jeremy’s upbringing that caused Jeremy to be this way. They first assured to us that there was apparently nothing wrong with the upbringing of Jeremy. They also explained that his condition was nothing that he had contracted. Now, as dumb as it may seem, it was truly a relief for my husband and I, that it was nothing that we had done in raising Jeremy. However, with that sign of relief, there came the issue of what type of care would Jeremy need in going forth in his life. As the doctors continued to explain to us, that some of the symptoms that Jeremy may encounter in his life might need to be controlled with medication. They also explained that counseling along with continued therapy might be needed for support. They stated that Jeremy would have a short-term attention span, anxiety, depression, mood swings, schizophrenia, kleptomania…just to name a few things that will come about from his diagnosis. At that point, words could not express what my husband and I felt for our son. Somehow, we could not help from blaming ourselves for Jeremy going through these issues. All we could think of doing at that point was holding onto Jeremy and not let him go, but we knew that we would have to do much more than that. Therefore, we took it upon ourselves to learn as much as we could about Jeremy’s condition. In the meantime, the hospital psychiatrist gave us some options and places where we could get Jeremy medicated and advice on his treatment.
Now, let me say that this was just the beginning of our journey with Jeremy. We did not know from one facility to another, which one could really benefit in our sons condition. One thing that we did not want for him was to be stereotyped, put on a bunch of medication, or used as an experiment. Therefore, we set out to educate ourselves in regards to Jeremy’s condition. We took the initiative to interview doctors, medical facilities, reading literature, and attending lectures in regards to Jeremy’s condition. If there was a certain facility who did not want to provide the necessary information regarding Jeremy’s care, meaning that they just wanted us to let them take over and just medicate him, then we immediately dismissed them from our list of treatments for Jeremy. Now, we were able, over time, to put Jeremy in certain recommended well-known organizations that were known for their treatments with Mental Illness. However, after sitting in some of the sessions with the therapist and then being sent over to the Psychiatrist (every two months) we began to feel that their process of treatment was like an assembly line and a routine for all the patients. Even though Jeremy was just sixteen years old, at the time, the therapist explained in front of Jeremy that his parents did not have to sit in the sessions with him. We strongly disagreed with this, because we felt that as a thorough treatment, we should be involved with him. It got to the point where therapist (who was less than ten years older than Jeremy was) began lecturing us on how not to be controlling parents to our child. He should be able to express himself without his parents being around. That did not sit well with me, and looking at the expression on my husbands face did not sit well with him. That is when Christopher explained that Jeremy does not pay his own medical bills, nor can he make rational adult decisions, therefore, if we are not allowed to sit in his sessions with him, Jeremy will not be attending any more sessions in this facility. At that point, Jeremy stated that he would rather his parent’s stay in the sessions with him, rather than leave. In the sessions, the therapist did not seam to think that anything that we mentioned about what Jeremy did was relevant. He felt that Jeremy was just expressing himself as a teenager. This not only made us very frustrated, but also was drawing us to the conclusion that this was not the facility that we wanted to continue to have Jeremy at. When we were able to meet with the psychiatrist at this organization, we felt that the support was equally lacking. What I mean by this is, they had Jeremy on a thirty-minute window. During that time, the psychiatrist spoke more about her personal life and spent have the time looking for Jeremy’s paperwork in his file. This was reduced down to a fifteen-minute session. Going back to our initial promise to one another, we were not going to let this organization make Jeremy be a number and let them heavily medicate him, just so that they could be paid. Therefore, we made a judgmental decision to withdraw him from that program and seek help elsewhere.
From this point, I realized that I had to dedicate more time in researching on receiving help for Jeremy. Therefore, I discussed with my husband about leaving my position as Administrative Assistant and becoming a stay-at-home Mom to dedicate more time in working trying to find suitable medical assistance for Jeremy. I also realized that I had to change his diet, supervising his surroundings, and we also had to be more attentive to his needs. In my endeavors, I was able to locate specialist in my area in Jeremy’s illness. The doctor was able to shed some light on what we as parents needed to do so that we could help our son in his transition of understanding what was going on with him. I have been for six years now, in and out of the judicial system with Jeremy. I have had more problems with Jeremy in and out of situations than what I care to talk about. He has had so many strangers to take advantage of him, just because he does not understand. Jeremy has always tried to “FIT IN”. You have to understand, that special needs individuals know they are different than everyone else, so therefore, they try even harder to fit in. Jeremy has always befriended strangers, but they only tried to take advantage of him. When he was under 18 years old, I made sure to keep him very close to me. I made sure that no one hurt Jeremy, but once he moved out with his friends, well, then every thing fell apart. I would get calls about all kinds of things going wrong with Jeremy. I tell people if they are familiar with the entertainer Brittany Spears, than they can understand what Jeremy is going through.
In conclusion of my story, of Jeremy’s Journey, I don’t want to mislead anyone that his Journey is over. Fast forward to 2012, Jeremy is now a 23 year old young man with the mentality of a 13 year old teenager. The doctor’s have advised us that there is not much hope that Jeremy surpassing this mental stage, and becoming more into his age group. Therefore, Jeremy’s Journey continues on with medication, understanding, patience, and continuous love from his family. I can only hope that my brief story of my son may help someone else in understanding that there is always hope for those who experience similar conditions as Jeremy. These conditions may seem overwhelming, overbearing, and without question, trying. However, if you continue to be diligent about your efforts of seeking help, I can only say that with the correct information provided to you, it will get better. Both my husband and I felt we were not qualified to start BAFOL, Corporation (in the beginning), but we definitely wanted a company made up of other families, friends, etc. going through the same struggles, as we do. This way, we could develop programs from the heart that would incorporate things like a PSG (Parent Support Group) and to share information. Especially, new research and alternative treatment options as they became available. We also hoped to build a community where parents would be inspired by each other’s steadfast hopes for their child/teen/adult futures and who would be passionate about Autism education for themselves and other similarly struggling families and raising awareness in the general public.
Please, in your search to find out more about Bipolar illness, go to www.nationalbipolarfoundation.org. This foundation was able to assist my family in helping Jeremy. Remember, you are the advocate, teacher, warrior, protector, and last but not least MOM & DAD for your child. Don’t let anyone tell you different. It does not matter how old your child gets. Why, because that little bundle of joy will always be your baby…no matter what.
For those of you who feel that BAFOL can be of any assistance, please feel free in contacting our foundation at 502-408-1847. You can also email us at [email protected]
Also, please feel free in requesting to become a BAFOL volunteer. Just go to our CONTACT US page and fill in the information. Our volunteer base is growing steadily, and this is what helps to bring BAFOL to the millions of individuals who really need our help. Help BAFOL to help others.
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Thank you, and may GOD bless your heart.
Jeremy’s Journey is one of the most delightful and informative stories for today’s readings.
-T. Proctor | Autism Advocate
Once you pick up Jeremy’s Journey, you can’t put it down!
-R. Sanders | JCPS Teacher
-Brittany Sears | Autism Advocate