Managing Editor's Note: Below is part one of a two part series sent to us by Bob and Jane Smith who recently placed their 13 year old son TJ in a group home. (Names changed to protect the family.) We invite you to share this post with family, friends, doctors, therapists, colleagues and your local media. Part two runs tomorrow. KS
Our family has experienced numerous challenges due to having a vaccine injured child with autism. Our story is very similar to others shared on the Age of Autism in the past. My wife and I have only recently endured the greatest challenge of all. We have placed our 13 year old son in a group home.
This was, as you can guess, not a decision we took lightly. Although we knew that we had the support of friends and family, there is always a feeling, somewhere in the pit of our stomach that we both have to tackle whenever it pokes its nose out – “Did we do the right thing?” For several personal reasons we chose to submit this chronicle without our real names, we hope you understand.
Writing this letter to you as well as other parents is my way of battling my personal demons. It is an exercise for my own emotional well being, yet I hope in some way it will help others as they make their own transition to the inevitable – letting others care for their child. Conveying exactly how we came to this point requires me to share heartfelt but gut wrenching testimonials sent to the State in the form of impact statements from our family, extended family and friends. This account concludes with the placement of our son. Though very positive at this point in time, the complex details recounting our experiences and emotions from that point on are better left for another day.
TJ’s story is similar to many others. Jane had developed an auto immune disorder before becoming pregnant. She had a flu shot, a mercury amalgam filling replaced and gestational diabetes during pregnancy. TJ was induced with Pitocin and born normal with Apgar’s of 9 and 10. He made all of his developmental milestones until after the age of 12 months.
TJ was given Hep B at birth without our consent. Since Jane was “livid” that they did this without our consent, the hospital did not record the shot. At our two week “well baby exam” he was quickly given the Hep B again because it was not included in the hospital records. Each well baby exam at 2 months, 6 months, 12 months and 18 months brought more and more unexpected and “pressured" vaccinations. After a flu shot at 24 months, we finally began to say no to more vaccinations.
Starting at the age of two months however, TJ’s immune and digestive systems began a slow and steady decline. TJ developed chronic unexplained diarrhea, unending fevers and “ear infections” leading to two sets of tubes before age 24 months. His adenoids were scraped at 6 months; tonsils were removed at age 30 months (they looked like he had three tongues). He was on antibiotics for nearly 600 of his first 900 days of life.
At 15 months, TJ developed septicemia and a septic hip, but no bacterial agent could be identified. At that time, he could not feel pain and it took three days to convince his pediatrician that something was wrong. Emergency surgeries and a months worth of IV antibiotics later he cleared the infection.
Our beautiful son slowly lost significant skills and began repetitive behaviors shortly after his 12 month well baby visit. By 18 months, Jane suspected autism, having only seen it portrayed on the 1980’s drama “St. Elsewhere.” By 2 years of age, he fit the classic definition of autism.
For the most part his behaviors were manageable but required me leaving my job and working with him home. We chose a full time home based Son-Rise Program. We were fortunate to receive a Medicaid Waiver that allowed us to train and pay our own staff to help us with TJ since he was three years old. Our angel came in the form of an unbelievably patient, loving and understanding young man. For the past four years he was right alongside of my wife and I, enduring some of the most destructive and aggressive behaviors imaginable.
For many years our family, friends and neighbors had openly questioned how long we could keep up with this life we lived. Our immediate families lived over 300 miles away and we needed to travel overnight to visit. But it was no longer feasible to stay with anyone and motels were even less of an option with a child like ours. Christmas 2009 was my darkest day, as I realized that the very last home we were welcomed to bring him to stay became a place he did not want to be. I found myself driving up and down the Lake Michigan shoreline in an ice storm contemplating driving right in. Thankfully the boy in the back seat, who was only calm when being driven around, smiled at me and made me realize how lucky I really was.
Jane and I started openly discussing out of home placement last year. These were not easy conversations between us and there were many tears; of anger, frustration, sadness and love. We made it through the other side, battered and scared, but resolved to do what we knew was best for the beautiful child we loved so much.
The process of applying for the placement with our State required us to write letters explaining why out of home placement was truly necessary. The emotional toll of such and exercise can only be understood by reading the letters themselves. My testimony follows along with a few excerpts from Jane, my son Jim, my sister, my sister-in-law and a good friend.
November 14, 2010
To whom it may concern:
It is with great humility that I ask for your approval that TJ be allowed out of home placement services. We have reached a point in our lives that we see that it is in his best interest for this to happen.
When TJ was younger and smaller he was easier for me and Jane to deal with. His behaviors due to pain and discomfort from his bowel disease and other medical issues were expressed in less destructive ways. We were more successful at redirection and resolution of the causes of his distress. The past few years, however, have proven to be much more of a challenge for us as we age. The energy level necessary for us to keep up with him is diminished by the fact we are dealing with lack of sleep and inability to get into a proper exercise regimen. We feel a lot older than we are.
TJ’s behaviors have also had a profound effect on how we choose to respond to individual actions by him. “Pick your battles” would best describe how we have been getting by. If he tosses our dishes on the roof of the house at least he is not throwing them at us. If he wants to have the refrigerator door open for long periods of time and shake the liquid in different bottles, at least he is not tossing them on the roof. These are examples of when he is in a relaxed mode.
When he is uncomfortable or in serious pain, the decisions become harder to make because of what we fear will happen. In the last year, TJ has thrown and broken five televisions, all of our VCR’s and DVD players, and has broken countless toilet tanks from banging the toilet lid against them. When our computer “crashes”, it crashes against the wall. I have to decide which is more tolerable; having TJ punch, hit, bite, kick and scratch me, or having him destroy our house. Unfortunately, with his recent growth and onset of puberty, it is also getting harder to choose to redirect him from less desirable behaviors (such as spitting, peeing or pooping on the floor, keeping the front doors open in the winter, running around naked, etc.) because we no longer have the energy to deal with the resulting throwing of chairs, banging our cupboard doors until they break off, or the alternative physical abuse we endure from TJ when he is in greater discomfort.
We have simply given up fixing our walls and do not replace broken furniture. It pains me to say this, but sometimes it feels like I have allowed TJ to break my spirit. Not because he ever intended to do so nor did I ever think that was where I was heading; I simply find myself questioning how long we will be able to continue to keep him in our home. Jane is brought to tears thinking about letting him go. I am brought to tears thinking about keeping him home. This makes for a very interesting family dynamic to be dealing with on a day to day basis.
Along with the giving up on damage to our home and property, routine maintenance and other household projects like lawn care are often left undone or impossible to complete. Our neighbors have been very understanding regarding TJ’s behaviors and our inability to keep up on exterior “curb appeal.” They have however, been asking us for a few years now how long we think we can keep him home and when we would think about sending him elsewhere.
While the constraints of caring for TJ used to allow for it when he was younger and smaller, hobbies like fishing or gardening have become non existent. Our lives have simply come to preparing foods, picking up messes, going to work, cooking for TJ (separate meals from the family) doing dishes, picking up what he throws off the deck or on the roof, laundry (he uses showers or tubbies to calm himself down 2 to 10 times a day) and starting all over again. Even simple things like playing a game of cribbage with my wife are only distant memories.
TJ is prone to waking up unexpectedly in the middle of the night. This requires that I sleep with him or in the same room. I sleep lightly, waking every time he moves, steals the covers, or coughs. I cannot remember the last time I slept for more than 3 or 4 hours straight. When I have been away from home overnight and Jane is with him, she has trouble sleeping because she is afraid that she might not wake up when he does and he may wander. Having TJ in out of home placement with an overnight awake caregiver would be the best scenario for him. As for sleeping with my wife, I cannot remember the last time that happened – was three years or four years ago? I don’t know anymore.
Our life with TJ is not all gloom and doom. When he is comfortable, he is the sweetest young man and very playful. He likes to play “chase me” and “tickle me” games but we tire much sooner than he is ready to stop. He likes to page through magazines and books, having us describe what he points at. He loves to explore online websites like PBS kids and other educational sites, but requires direct supervision so he remains calm enough to wait for things to load up. It is also interesting to note that while TJ is significantly delayed from his peers, he is still the typical teenager, trying to be sneaky when he wants an activity or object that we have asked him not to do or have in the past. He will even point in another direction for us to get something while he is obviously standing at the ready to get what we do not want him to have, so blatant it is hilarious.
Traveling to see other people as a family is now impossible. Many of our siblings have never invited us to their homes at all since TJ became autistic. My mother’s and Jane’s brother’s homes were the last ones we really felt welcome at, but last year he had large scale tantrums at both that changed all that. I spent Christmas driving around the suburbs for over 8 hours because TJ would try and destroy their home when we returned. My mother just turned 77 years old and can no longer handle the stress, and TJ had hit her the last time we were there this summer. Hotels and motels have their own set of issues. We had the police called on us when we took TJ to Austin, Texas for his gastrointestinal surgery. While this was easily diffused we feel that it is always be an incredible risk if we have to rent rooms in the future.
I have a hunting and fishing cabin “up north” that I take TJ to as well. He loves it there but his behaviors mean that when he is there most of my friends and relatives no longer want to join me as they had in the past. It is a very rustic place and largely indestructible but TJ broke two windows on our most recent visit when he tossed some pots and pans around.
Regarding our other son Jim, who turns 16 years old in January, we do our best to give him “equal time” but it is challenging. He loves the cabin trips as well, but since I have to bring TJ along and stay with him at all times, Jim ends up doing more solitary activities. When TJ was younger, Jim and I were involved with Cub Scouts and Boy Scouts and we went camping often. Our last camping trip was over three years ago.
Jim developed very close friends in scouts and they have been the only ones that truly understand TJ and are comfortable coming to our home. They used to come along to the cabin with us but have passed on many recent opportunities which we suspect is because of witnessing a few of TJ’s severe tantrums. Jim and I also used to get away with short “father and son” trips to the cabin, just the two of us. The last time we did so was this past June. On the way there, we had no less than ten messages from Jane describing problems with TJ. Though she did not want to ask, she was nearly begging us to turn around even before we made 15 miles. Jim is now gaining new friends in high school and is very good at maintaining a wide variety of relationships. He is very reluctant, however, to mention anything about his brother and would not think about bringing new friends here, especially the girls. It is going to be difficult for us to be effective and responsible parents if we can not meet any of Jim’s new friends because he will not bring them here. I suppose it is possible he might not want them meeting his stressed out and frazzled parents as well.
This brings me to the major reason I feel that out of home placement is the best place for TJ. It is quite obvious that Jane is unable to handle TJ alone for long periods of time. When TJ is happy and comfortable things go great, but the nature of his bowel disease makes his comfort level very unpredictable. During those times, Jane often has to ask for assistance. I been called back home from my “time away” activities many times to help control TJ’s tantrums. When he is really out of control, even I am unable to stop him. In May thru June of this year, I had several occasions where TJ scratched my face, arms and legs so badly it looked like I had been attacked by a wild animal.
I have still been able to handle TJ alone, and have taken him to the cabin five weekends out of the past six which went fairly well. This was so Jane could finish the taxes, conduct her business and finish her continuing education credits. Having TJ out of the house is often the only way for her to complete these tasks. I also wanted her to take some time to simply relax and do something she enjoys. She very rarely does this and it is usually only with strong urging by me. She is extremely reluctant to take time out to do something just for herself now.
I am different from Jane. I am not reluctant to want to take time away for myself. It is becoming blazingly obvious to me however, that I must remain home or very close by due to Jane’s increasing inability to physically deal with TJ. I love my son and my wife very much, but sometimes I take exception to not being able to get time away for myself for a day or two. This is an incredible emotional roller coaster to ride. I realize that I am responsible for the raising of my children and should not expect others to have to pay for it but “trapped” is a feeling that keeps coming up. Trapped in my own home, trapped with TJ. I feel ashamed to even say it; it feels like saying I don’t love my son.
By September of 2008, our caregiver was well trained and doing 40 hours a week with TJ. I asked my past employer if they could give me my job back and they agreed. I work close enough to home that I am able to return home to cover the lunch hour so he can take his break. I am only able to put in around 30 hours a week, so I often do not get all my work completed which affects my employer’s satisfaction of my duties. Our caregiver is a wonderful young man and has been 100% devoted to our son and our family for almost four years. He has notified us that in April he will be moving and would no longer be able to spend more than a few hours a week with TJ after that date. We brought in two other caregivers over the past year and they did not work out, mainly due to the stress caused by TJ’s bowel disease pain. It was rare for us to find someone who can handle TJ like our caregiver does. It is much harder to find someone who can do it for 8 hours a day, 40 hours a week. I n over ten years, no other applicant has ever even offered. This means that I would again have to give up my job to seek out and train new caregivers. I am not sure my employer would give me a third opportunity at my position in the future.
Jane and I pride ourselves on our herculean efforts to help TJ resolve his medical issues, help him to speak and become more social. He has come a long way from where he was at two years old. We do not make the decision to ask for out of home placement lightly. We are hopeful that having caregivers that are not constantly overtired, overwhelmed and over taxed on energy will give TJ more opportunity to grow into a happy and healthy adult, and give us the opportunity to become more effective parents.
I strongly urge you to approve out of home placement services for TJ.