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Part 1 The Greatest Challenge: Autism and an Out of Home Placement

SadHouse 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.

Comments

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Jennifer Rabago

Where is this home that TJ was put into? We live in Oklahoma right now and I cannot find any group homes for my son.

Marie

Everything I just typed has vanished.
I was so happy to share my story with others who would understand.
Now, I am so emotionally drained, I will try tomorrow.

D.A.N.

I truly feel the pain of so many who are commenting on this page. 3 Years ago my son who is now 15 and 6 foot 1 starting acting up. We always thought he had some corks, but his behavior now is all against me, his father. He doesn't want me talking in the home to anyone except my wife, and that means ignoring my 3 other kids. If I do anything that he doesn't like, he will scream, destroy anything he can until our home has been completely ransacked. He screams and asks me questions over and over and then when I answer it, he can't handle the answers and does it all again. He has been diagnosed as being High functioning Autistic along with possible ADHD and or OCD tendencies. He does throw things at me and we have had to call the police on him, he has been in the mental hospital and then went with family for several months. We are trying to give him another chance but he acts like he runs the house and if we don't do what he says he will do it all over again. It's been 18 months straight of this and we are exhausted with no real help. Counseling and meds don't help at all. I pray to God for a miracle knowing He loves my family and my son. Thanks everyone for sharing and please pray for one another and know you are not alone.

Luanne Helms

My family lives in Alabama and my 17 year old son with severe autism and epilepsy, was not given a appropriate and free education causing us to have to pull him out to homeschool last year. His behaviors are difficult to say the least. We are at loss for help, afraido for our future. I can be contacted at helmslu@gmail.com
I'd love to talk with other parents with a teenage child living at home and what you are doing to keep sanity,and safety.

Morag MacDonald Lyons

I had to put my professional hard hat on to read these stories today and they still reduced me to physical tears and left me chilled and speechless.
Same Health and safety risk assessment failures happening in the UK
Winterbourne view-Hospital abuse BBC documentary Panorama 2011 truly shocking .
Mental Welfare Commission for Scotland
Investigation into the death of Ms MN
A vulnerable 44 year old woman with an Austic spectrum diagnosis and complex needs, took her own life in a care home in Scotland December 2012 .also truly shocking distressing failures .
ASAP NHS action for a safe and accountable peoples NHS in scotland is "a work moving forward "

Hera

Hi Ashley;
if i remember correctly, IQ tests are generally only considered accurate plus or minus 5 points; his real IQ may in fact be 71 already.
If what he needs to get help is a lower IQ score, you could get him tested again by an outside/non school psychologist.
Also good to remember that IQ can change over time ; a friend of mines' son dropped ten points between two different tests, the tests were several years apart.

Ashley C Brinkley

My stepson is 18 years old, loud, violent, and has Autism. We live in Alabama, and between his mother and I, have exhausted every possible option out of the home. We keep getting the same response over and over again. "his iq has to be 71 or less". When his school tested him, his iq was a 76, though I highly believe they fudged the records, so it would look good on the school, and would save them money. We are at a massive impass with him, and have to lock everything in the house to keep him from going berserk. Have you ever had to lock your bedroom door every night for 2 years in order to sleep even a little bit comfortably? It is miserable. No one has really tried to help us, and no one seems to care to help us. Even Autism Speaks primarily ignores our phone calls and emails, and has never once returned either of them. Supposedly, they are a great group to talk to, but I highly doubt it from their lack of response. We have no other options at this point, other then to wait and see if he will attempt to kill us in our sleep, or attack us again. If anyone has any idea about what to do, then let us know. There is no sympathy here anymore, and we have had to look into extreme options for removing him from the home. I have called the police on him once, when he physically attacked me. What's next? The inevitable outcome is that he will attempt to murder us, and we will have to defend ourselves, and there's no answers to this?

Grace Green

John Lewis, thank you for your comment and description of your life. I have been trying to get this across to parents of autistic children for a long time. I ahve experienced most of the abuses you describe throughout my life, and many other autistic people bear witness to the same problems on a daily basis. I can assure you that, sadly, it isn't just in group homes that these things happen, but across society also. Indeed, the worst perpetrators are civil servants, officials, teachers, and others in positions of authority, who are all too ready to take advantage of our honesty, kindness and willingness to accommodate others. I.m glad you are strengthened by your faith, and I would say you can also take heart from the fact that you are not alone, but many of us are struggling with exactly the same problems, and can support each other. I believe the time will come when we will be recognised as victims of abuse, and be compensated, I hope you didn't mean that you believe you are always at fault for everything that goes wrong in your home. That is how they use us - as scapegoats - and it's very important to remeber that it's they who are the wrongdoers, not us. Keep fighting on, and good luck for the future. Grace.

john lewis

ive been living in a group home for about a year and a half I guess. I will be leaving in about six months. I do know that there are some group homes that will treat you well and others can mistreat you and abuse and get away with it. all my life I have been abuse in all the ways you can imagine. I have been put down, lied to, cursed at, beaten countless times, I have been abused, physically, mentally, financially, and sexually abused mo whole entire life. there are a lot of things that I have learned and that's to stay to yourself, keep your head down, follow all directs, be respectful, do right and forgive those who have hurt me, and abused me. I learned that no matter what happens when I'm in this group home that it's always my fault and I suffer for depression, misery, anxiety, and anger. I do very well out side of the group home. I'm very well mannered, respectful, very social, smart, hard worker, loyal, honest, and kind. I did all this with my help, basically saying I was self taught. I never had any fun like I wanted to have growing up. to all those people who have been put in a group home. I just want to let you all know that I feel your pain, I feel your anger, I feel your depression, I feel your loss of freedom, I feel for all of yawl out there and I'm sorry that every last one of yawl had o go through that stage in your life. I've been at this group home for almost 2 years and I still don't have my freedom. I completely understand. if I ever have time anybody that wants to start off a conversation with me or tell me anything that's hurting and you need to let out I'm here for you all. I really mean that. all I have ever done was help and it just keeps getting worse for me. but I have god on my side. if any of yawl believe in god or don't know god, please give your life to Christ. he will help you just pray, keep praying, he'll be there for you. I promise. it just takes patience.

Baby

I am too is suffering ! My daughter is autistic she's 17 years old and she is abusive to me when she don't get what she wants and when she wants something it will be "right now " and then she hits me and she is big girl she's 170 lbs and I am 100 lbs . I already decided to put her in a group home I did talked to her case manager and it's getting more people involve and nothing is getting done I'm so tired if meeting after meeting . I am a widowed for ten years now and I'm doing it alone . My son who is 23 years old is moving out cuz they have a baby and we can't trust her being around with my autistic kids . There's an incidence that when my granddaughter was two months old my autistic daughter was pulling her arms and I'm pulling her arm back so I screamed for help for my son and his gf so after fighting we finally got my graddaughter free from her so since then we kinda distance the baby from my autistics daughter I'm begging for them to put her in a group home but it's not going anywhere it's just all meeting and meeting and meeting . I don't know what to do right .I don't know where to start , who to ask for help . Her doctor told me to call the CPS cuz she saw her for several occasions when we go to her clinic that my daughter was so mad and hitting me and yelling at me .But I'm afraid to call CPS cuz I do t know what will be the worse scenario . I take care of her for 17 years I still want to be able to be part of her life that's why I think group home is best for her and me but I have no clue who can help me . I am so tired plus when she was young I take care of her dying Dad for 5 years .i used to say there's always light at the end of the tunnel but now it seems to me my tunnel is too long , and there's no light . I am alone struggling with my problem with my daughter although I got respite and hab thru DDD . I am so emotionally depress in everything .At this point it seems I'm so done but can't be done cuz no one listen to me that I need to put her in a group home . At first her psychiatrist said to me you can put her now and next thing I know that hope is gone . And her DDD liason said in a meeting that "we are not here to judge you but if u decide to put her in a group home let us know " and that's what I did I let them know next thing I know that hope is gone . It's like they are just giving me hope and then. Turn me down and that is most depressing .
She sleeps good at night but she wakes up early and when she wakes up she is loud so I do what she wants so the rest in the house can sleep but there are times that I'm so tired and it's too early so she gets mad and pull my arm and if don't open my eyes she is poking my eyeballs .im 55 years old now and I'm wanting to have peace of life .
I really don't know what to do ...if someone knew or could help me who is the right people to contact to start the paper work for her so I can put her in a group home please help me .

Kay shaw

Hi I live in tn the worst state I get no help my son is very aggressive and I never sleep his brother and sister are being affected so bad my 15 year needs to help me what life is that I want 2 give my children a life nor a prison sentence my son needs to be in a group home for his safety can you recommend a group home that will help me maybe in south or north carolina some were that would be close for me if I needed to move

lena

hhhhhhmm, look here

http://www.autism-society.org/about-the-autism-society/partners/

In 2007, the Autism Society entered into partnerships with several national organizations to address the growing health crisis of autism in the United States. We have partnered with NATTAP, a national network of autism educators and therapists, to create professional standards and training for the overwhelmed education system. We also have partnered with NARPAA, a national residential provider association for autism, and APSE, a national employment support organization, to find solutions for our adults on the spectrum. We have also partnered with numerous autism organizations dedicated to early identification and treatment.
_________________________________________

i'm going to sort this out later as it's after 2AM

lena

simply skimming through a google search, looking for residences autistic and came here/

wow.
isn't it something ALL OUR EXPERIENCES- and for some reason i thought my adult's son's crazed violent OOUUUTBURSTS were a rare thing among the autistics.

hang in there, be strong-you've been through it before and IF safety is the issues, as it is AGAIN IN HERE, we will search and find the correct place that meets our criteria for our child's needs.

Lisa sain

Hi Bob
How is your family? I asked for your update years ago & was grateful for your response. I filled out the paperwork for my son, as I posted in 2011. He was finally placed after grueling days & nights of phone calls, emails, paperwork and heartbreak. Ironically it's been two years since my son has been placed. I would love to keep in touch. Your story was one of a handful that for lack of better words inspired me and helped me find the courage to make such a desperate yet needed decision. My blog is
Lisasain.wordpress.com
Please if you can find a way to get in touch :)
Thank you!
Lisa Sain "InSain Asylum".... Fitting ;)

Tammy

My son turned very violent at the age of 16. Before that it was self injurious head banging. He would bang his head through walls, glass doors, even the back windshield of our car. His OCD was through the roof. Then came seizures at the age of 17. And worst of all seizure meds. Almost every seizure med he took would result in violent behavior. He almost bit my ear off once. He scratches and bites all over. The worst time was because I didn't give him a fifth cookie. He came after me grabbed me from behind, bit my head, my back, threw me against the wall and started jumping on my chest. I had to kick him to get away, run to my bedroom and crawl out the window.

But the thing I want to say is that we tried medical marijuana (we thought for his seizures) but not only did it help his seizures, he stopped being aggressive. I mean STOPPED. From 40 minutes after he got his first dose. Now, before you tell me that he is stoned and that's why - you are wrong. He takes a transdermal patch made by Mary's Medicinals (luckily we live in Colorado) that is only 10 mg CBD:THC. It would take approximately 70 patches to equal an average joint. He takes a half a patch five times a day. It is close to controlling his seizures, but most importantly it has taken away his aggression! We have been able to go on vacations again, and he is slowly coming out of his shell again. Wanting to go outside, not afraid of hurting anyone again. He smiles so much now - like a long time ago.

I truly hope they do research on this soon, because all of you are right, no one knows what to do with our kids. We were denied by several doctors - saying they didn't want him as a patient - he was a tough case and they could make more money on the easy cases. I get it, but our kids are the ones paying for it.

Please try medical marijuana - it might change your lives forever - like it has ours.

gertrude carson

We are in need of a "group home" for our 10 year old son. For every reason already listed. Please help us in locating a home in the Shelby NyC area

clarita

hugs all round as surviving authentic autism remains difficult.
and yes I use the word "authentic" as it has become obvious that the words AUTISM AUTISTIC has been diluted.
Those dealing with autsim KNOW what I am speakng on.

parents ? if your child has aggressive and violent behaviors, what options are there ?
ONE and ONE ONLY
that option is getting the behavior under control and placement.
Now where i m located and DUE TO THE STATE never giving SSI and the ensuing medicaid DUE a disabled kid, we were waaaay down the bottom of these lists for APPROPRIATE placement.
THEN the agencies COMBINED THE LISTS statewide leading to further problems-
so my son IS ALREADY 35, been maintained on psychOtropics,still has ""externally"" unprovoked outbursts WHICH ARE EXPLOSIVE,
still at home etc/
IF THEY OFFER PLACEMENT and it is agreeable TAKE IT.
do NOT LET THE STATE GET GUARDIANSHIP as a requirement for the placement either.
NEVER.
they're lying IF THEY DARE TELL YOU that their being the guardian enhances or speeds things up-

and to those seeing their children bruised etc REPORT THE DAMN STAFF to every single state and federal agency and inform THEM that any form of RETALIATION WILL BE MET WITH LAWSUITS.

yeah I finally WOKE UP and understand that the rights of a disabled CHILD were violated-denied proper treatment, admissions etc due to no medicaid, and OUR RIGHTS WERE VIOLATED THE SAME...researched the federal laws etc and have become LITGATIONOUS.
NO ONE will ever deny my son what he is ENTITLED TO under the law again.

NOW I will cause the majority out here to most strongly DISAGREE with what's NEXT-but hear me out,PAUSE and THINK-not react--THINK
the closure of the clean and structurally sound buildings labeled psych facilities.institutions etc WAS A BIG MISTAKE.
These facilities could have been used as housing,medical and psych and recreational etc all on one campus for our autistic children, then adults.
not all were hell holes, most had secure out door areas, LARGE common rooms, double bedded rooms, some even had swimming pools and bowling alleys and the cinema.

ALL THE PROBLEMS ASSOCIATED WITH INSTITUTIONS WERE SIMPLY DUE TO THE UNENFORCEMENT OF STATE OCCUPANCY LAWS and staffing requirements-WHY WEREN'T THEY ENFORCED ? I don't know. was it partially DUE TO THE FAMILY never visiting ? no one DEMNANDING funding and expansion ? i mean HOW THE HELL was Willowbrook in that condition ? WHERE WERE THE PARENTS ? they are also accountable and the staff should have been on trial right along with administration !!!!!!!

I would rather have my kid "inside" with a hard nosed SUPERVISOR making rounds 3 times a day,asking questions and demanding answers then these group homes where basically NO ONE IS ACCOUNTABLE etc etc.
definitely thre ARE GOOD GROUP HOMES the same as there were good and decent institutions.

thanks and take it easy-

Elaine

I came to this site looking for support for the decision I made 29 years ago to place my son in a group home. I still have lingering anguish over my decision. My son was also aggressive in his teens but was placed on Haldol which helped tremendously. After reading the stories of violent children I wonder if these children were ever helped out with meds? My son Zach is now on Risperidone but he still has a lot of behaviors. I placed my son when he was 17 because I and my family didn't have a life caring for Zach. I will say this: when you place your child in a home you lose a lot of control over his care. My son has gotten black eyes and has been bitten by other aggressive clients. When I have complained my son's placement was jeopardized. Every year there is a support plan meeting and all of the plans are ignored because of staff ignorance and disaffection. My son is non verbal but can use sign language. Does the staff learn the signing? NO! In spite of tapes and printed material no one follows the signing plan of care. He used to be able to clean himself after using the toilet. Now they don't even leave toilet paper in the bathroom. He now uses innappropriate behavior to communicate because he is non verbal and no one knows his signs. You can't win. I worry what will happen to him when I am no longer able to visit him. It's bad now, but after I am gone it will only get worse. I am so sad about all of this

MO

Hi, i am trying to help my sister with his autistic son. She needs to find a out of home for him. My nephew is 10 years old and he is very very violent. Has come to a point that everybody is in danger in the house. My sister has 2 girls and 2 boys. Both boys are autistic. One very violent and the other one not so much. How can we start on finding a place for my nephew? what should we do? what is the first step to take? My sister lives in NY.

Aderian

God Bless your family. I cried as I started reading this because your story is so similar to mines. My son will be 13 this July of 2015 and he is also autistic. He is very aggressive and has destroyed our home over and over again. I too don't know what I am going to do because he is getting stronger and stronger. I know that he suffers from pain also. I am trying my best to address these issues but sometimes it just seems pointless. All I can do is pray and keep trying for now but I fear that I will have to do the same for my son but I really don't want too. Stay strong and pray. Everything will work out for you.

Jeb

God Bless your family. My son is 13, non-verbal and is currently in a temporary residential placement. He is doing well with the structure and I am happy for that. The day I admitted my beautiful son was the hardest day of my life. I worry for him everyday. I don't get to visit as often as I would like, but those visits are bittersweet. My son is so awesome! It is a daily struggle of emotions for me and my husband. He is our only child.

sara van alkemade

What kind of program would you look for, for a 15-year-old with severe autism and medical issues, including hip necrosis (recovering from 2 hip replacements, but not walking unaided) and a g tube. He's 6'5" and 260 lbs -- more that his widowed mother can handle.

"S"

I lay here next to my autistic little 5 year old and cry as I read this. People keep telling me how I'm one of the lucky ones--that if my child has autism, at least it isn't severe. He is friendly (way too friendly), verbal (thanks to an early diagnosis and years of working with him), very smart (started writing words and numbers on the walls at 2), and he can be very charming and loving. I, too, had gestational diabetes and developed an auto-immune disease, or at least it was diagnosed, when I was pregnant. He can often pass as a neurotypical little boy, just a bit more like Dennis the Menace than most. BUT ... they don't know how taxing it is to work with him day to day without any respite. I can no longer work due to a bevy of medical issues, and, yes, being his primary caregiver in conjunction with my own health problems is extremely difficult. I often feel like I am failing him and everyone else. I have two sons who are 10 years apart. The oldest has ADHD, and the youngest has autism and most likely ADHD judging by his behavior and since I have found out that they are often comorbid conditions when a sibling has one. Something like a 50% chance. I'm also worried that he might have bipolar disorder. My older brother has bipolar disorder, and I'm disturbed by my youngest's increasingly disturbing behavior. Forget Loving Lampposts, my son screams at lights and tells them to stop talking to him! Anything from lamps to ceiling lights to the sun. But he is terrified of the dark, so he insists on having as many lights on all the time as possible. Most likely a sensory issue, which I guess is fairly common. And, at 5 years old, he is still in diapers with little interest in potty training; he still drinks out of a sippy cup with a gasket because otherwise he takes great pleasure out of pouring out liquids; he refuses to eat most foods due to a texture aversion and, when he does eat them, they cannot be mixed or touching; I still have to sleep with him for his safety (night terrors and sleep walking); he is sneaky and promises to "never ever do that again" even while he is doing the behavior; he can be violent and aggressive, especially towards me; he is extremely LOUD and constantly on the move; he has no clue about his personal safety and still tries to put things into wall sockets whenever he finds exposed ones; he has a tendency to tie things tightly around his neck; he typically refuses to follow rules while insisting that everyone around him adhere to them; his fine motor skills are advanced which has led to him being able to unlock carseat latches, including the latch covers that the special ed bus uses; he has his days and nights confused as far as his circadian rhythm goes; he seems to be most comfortable in an extremely messy environment, especially if he is the one who messed it up; and he cannot be trusted. Plain and simply, you cannot turn your back on this kid. He drowned a kitten last year by putting it into a bucket of water and putting something over it to hold it down last summer while I was in the bathroom, and when I told him it was wrong and I tried to resusitate the poor thing, he laughed. That was the most chilling thing; watching my sweetheart laugh at it. He laughs at a lot of things that are inappropriate. Like when my aforementioned brother got after him for spitting on him (and my brother was unkind and did not mince words about how inappropriate it was), he laughed and spit again. When I asked my son why, he thought it was funny to see his uncle talk with him like that. No idea about how to read emotions or pick up on verbal cues. None whatsoever. So you can imagine how that isolates me from my family. It is hard to see my parents dote on their other grandchildren, but be so standoffish with him, or me, because of his unruly behavior. He is unwelcome nearly everywhere. And the dynamics between him and his older brother are really unhealthy. My older boy also requires a lot of energy to help overcome his ADHD and be a successful student, etc., but I simply don't usually have enough energy left after dealing with my youngest. My older boy, a teen now, walks all over me, doesn't respect me, and he is doing poorly at school in spite of my trying to help him in whatever ways I have time for. I'm just like that kitten; drowning. So, I really look forward to my youngest going to school, but his behavior has led to his being sent back home minutes after arriving at school, and his teachers "forgetting" to mention or send home flyers about field trips and stuff. And he is in a special ed class!! I am so frustrated and worry about him constantly. It doesn't help to hear things like "you've gotta get this under control now because he is going to be a serial killer by the time he a teenager if he keeps this up" by extended family members. So, naturally, I worry that my health issues make me unsuited to be his mother and wonder if he would be better off with someone else. With my clinical depression history, this has led me down some VERY dark mental thought processes--things like maybe another mother would be a blessing for him if I were no longer living. Things like that. I'm actually here because I wondered what it could be like for us in the future. Does it get any better or does he continue to spiral? And, yes, I do pray. That's why I'm still around tbh. I just don't know what to do now, and I can only imagine what it will be like later on. I worry and worry and worry. I wonder if placing him in a group home with people better trained and equipped to manage his behavior would be a good thing for him. My family has already brought that up with me. That and medications of course. I just don't know what to do right now. I give him all the love and loving attention I can muster; my extended family tells me that my problem is that I am too patient with him. I just don't feel like I'm enough for him. I don't know where to start to make things better for him and for all of us.

Virginia

Our Matty is about to be released from a residential hospital after having spent 7 months there. We need to find a group home or other residential placement for him. He has fetal alcohol syndrome disorder with overlays of autism, developmental delay, ODD, and numerous other diagnoses. He is a sweet and loving child, aged 10, who has episodes of aggressive, self injurious and violent behaviors. We live in Florida, but we are being told that Florida does not have a setting for him. Do you or do any of the readers have any recommendations? This is breaking our hearts. Thank you for sharing.

C.Anita

I would like to share my viewpoint of group home life as a worker in them for many years. You did your part as parents. You went above and beyond your call of duty in all likelihood. Consider this: you child is grown up and now has an opportunity to go live in his own grown-up place away from home. New experience await him. It's been said, "You can always grow and learn." Most of the behaviors come from two things: 1. Insufficient communication skills and 2. Poor impulse control. Your children still love you. Like any other grown-up they moved away from home and have there own place now.

Chris

Hi Sir,
Thank you for sharing your story.
Please email me at if you could, I have some comments I would like to share with you.
Regards,
CB

Bridget Valentine

Plz forgive my spelling.. I like to say to TJ's parent that I believe u made the right discussion. I thought my grandson was the worst austism child u could ever meet..When he was abt 6 everyday the school will call me just as soon as school began. I had to go and get him.. I couldn't understand why couldn't they deal with him. I used to be so tired of everytime I turn around I got to go get him.. I was like well while is he there if your can't handle him? If only your knew the things I had to go thru .Now that he is 13,be 14 in July he not only play with with himself he is really going thru puberty but what do u do when he is in that stage? He eat, eat ,eat and drink all day long. He do not like when u tell him no, once u tell him no forget it tantrum start, he beat on his head, nose or chin.
Im asking for anyone that can help me. I just want to put him in a home where I can visit and be able to relax.
He have an coordinator and I'm looking for help, like when I asked for them to find a place to put him so I can go away they tell me that they gonna ask me why cant I take him? What kind of vocation would that be if I can't enjoy or relax with his kind of behavior?
He has autism and adhd and is mean as well.. Any infro my email address is queenbridgetbee@aol.com

Bridget Valentine

Wow !!! This is some story ... I'm experiencing a similar situation .. I been dealing with my grandson for 13 yrs .. He will be 14 in July ... My grandson is also autistic & unable talk... I been going they allot with him that I'm @ a point it trying to make a discussion on what to do with him as well .. When he was diagnosed as a child for autism he was 2. As he became 5 he gotten worst .. He will bang his head on floors, walls or you ... He have out holes in walls , broke my kitchen glass table in half, broke the chair , bedroom door .. I used to be able to handle him but now it's even harder cause he is older, bigger & stronger .. I want to find a home for him but close by that won't be to far for me to travel to see him ... He have lately became very aggressive toward my 89 yrs old mother .. I'm now not as string as I used to be & looking for a good home ... I know he can't help himself but it was like how can I place him somewhere else when he is still a child to me... Sleeping is not a problem but, he do have terrible tantrum , make loud annoying sound , can't take him no where , have no life , he gave behavior problems , mean as well .. I need serious help & advice from someone who is going thru what I'm going thru .. I've hurt my back from trying to go after him & again .. He is hard to handle but u need a life as well .. I live in Queens. NY & they was gonna send my grand upstate which wit if take almost 3 hrs to get there sich didn't except , then they find another place called Woods in Pennslyvania & I still wasn't happy ... I just couldn't understand why they couldn't find anything close by or that won't take no more then an hour to get there ...

nellie

This story brought me to tears please forgive my spacing my 9yr old son just wrecked the keyboard & i just found out lol. I am up against making a choice if residential is for my son he is 9 severe bipolar & adhd if any parents would like to connect maybe give me some insight to residential please email me. Im feeling pretty lonely at this point. Just drained. nelliehawkins@delta.edu

Brokenheart

Heartbreaking story. And so many similar stories including my own. Has anyone posed the question why these innocent beautiful children reach the state that was painfully described in the story above? I am curious, was TJ on any psychotropic medication while living at home? I would love to know. My heart goes out to this family and all of the families enduring similar circumstances.

Bob Smith

Lisa and others,

I had hoped for a long time to write a follow up post about our experience with the group home. Suffice it to say it would take a while to edit....

After 2 years things are going much better than we expected they would. TJ has adapted to his new home 22 miles away beyond our wildest dreams. The staff has been consistent and 100% devoted to the care of not only our son but to the other three boys as well.

Our Caregiver we described above not only followed TJ to the the Group home he is now moved up and is director of the staff of nearly a dozen homes, teaching and managing them to handle the upcoming clients with severe autism.


TJ's bowel disease is under "control" and pain issues are way down so he is much easier to handle. We have him home every two to three weeks overnight and we have so much fun.

I hope someday to fill in the missing pieces but for now, know that TJ is a success story!!!!!

"Bob"

Lisa

This was posted a couple of years ago and the story is eerily similar to my "story", I have the paperwork filled out to send my son to a residential facility. I would live to hear how TJ IS DOING! How are you doing? Any advice is much appreciated. I would like to know how things are 2 years later! Ty! Lisa sain

Daniel

Your Not Alone !!!!

My wife and I are about to place our 20 year old son Danny in a home who is severely autistic
because of vacinations. It is heartbreaking. What makes us mad is all the false crap the media
which is paid off by big "Pharma" to distance themselves from the facts.
Your son and ours are VICTIMS !!!!
I Know this to be be true!!! My older brother was put in prison for doing cancer research and producing cancer curing products.
May the Gods look over you and your son !!!

Kitty

Thank you for sharing your pain and story regarding your relationship with your child, TJ. I hope he is in a better space emotionally and physically. After being physically assaulted by my 16 year-old son with a left hook, I have come to the sad conclusion of placing my son into an out of home placement. My husband and I have done all we can to be supportive to our son. We have him in a special needs school, best doctors, therapists, etc., etc., he has become so strong and physically fit, that when he assaults my younger children and myself when my husband isn't home, his strength has just caused too much drama and stress. When he gets into his rages, he'll break and smash all of my glass family photos,kick in doors, break door frames, throw things everywhere and then hit me, his mother, I just have to come to grips that we are now over our head. I'm exhausted that my two younger children are exposed to all of this violence and worry profoundly about the long term effects on them, which only adds to my guilt of trying to keep my son in the home but can no longer. When I need a respite, he tends to enjoy staying in a particular group home, so his case manager believes it would be a natural transition for him to be there. I wish I had the support of family and friends but unfortunately our family and friends seem to "thrive" watching our pain as they compare their "perfect" child to our son. They don't understand what autism is and they say we don't know how to "control" our child and that we let him do whatever he wants and that's why he doesn't respect us...which is so far from the truth. But if you don't live it, you don't know it...and judging others is free and easy to do. My neighbor has huge smiles and practically just needs a bucket of popcorn and applaud when the police arrive at my door. Apparently a neighbor called anonymously hearing me screaming and/or hearing my younger children crying wildly at another one of my son's verbal or physical attacks on me. I haven't pressed charges on him even though the police have strongly suggested it...it's so hard when you are the parent of the abuser...this situation has brought on huge marital stress, stress with my children, and stress with my own wrangling emotions of feeling like a failure as a mother and perhaps wondering what could I have done to have prevented this...I wish there were support groups for isolated parents like me who don't have family or friends who understand...again, thank you for sharing TJ's story. God bless.

Floortime lite mama

I just want to send you a major hug
Clearly you and your wife did all that you could for TJ
Some problems just are not fixable
Also this placement may be very beneficial to TJ

Cherry Sperlin Misra

Jane and Bob, I am full of respect for you for so many reasons Obviously you are making the best decision you can at this time. I particularly appreciate your concern for your older son. You absolutely owe it to him to spend these important years of his life giving him the attention he needs. He may marry and have children and those little ones deserve to have happy grandparents contributing to their development. I dont know the answers for TJ but destroying a great many other lives cannot be the best solution.

Sharron

I could not finish reading this qrticle. I just sat and looked at my 14 year old autistic son. I love him so much, I know I could not let him go to a home. I thank God that he has blessed my husband and I so that one works the other stays home. No we don't have a fancy home, or a bunch to "stuff" just a simple lifestyle off a RN paycheck.
I have had to sleep with my son for 10 years. Then one night he heard me snoring and threw me out of the bed. My husband and I had to adjust to me being back in bed with him and developing a relationship with eachother.
Our son is homeschooled. Yea! he will start highschool at home. I just thank God daily for our son. He has truly blessed us. We prayed for Divine Healing and though our son is not sured, and I'm sorry we can't reverse what we don't know. My God has made our son a sweet. loving, and enjoyable child.

Ask God to heal your son! Just like he healed ours, he too will heal your son. Listen to God when he speaks to you. He will direct your path. I remember when the doctor told us our son would never speak, and never tell me,"Ilove you".I said that's ok. Just as he know I love him. Everyday, I rubbed his back, listen to smooth jazz and said how much I loved him. Then one day he said"I love you too mommy." Wow!
Ask God to touch your son's spirit and soul. To remove what toxins are in his body. To make him a gentle spirit. Then Believe it will come true. Pray everyday for this Miracle, and it will happen.!!!!!

Marie-Anne Denayer, M.D.

What is your town's school system doing for TJ?

Chris

God bless TJ's family. I feel this could very well be us when my son hits puberty, as he has aggressive behaviors, severe autism, nonverbal, severe OCD. Like you, we are doing everything in our power to reverse his "autism" symptoms but it's a slow road toward healing the damage that has been done. I have a friend who placed her 19 year old in a group home setting and after 6 months, and a laundry list of new meds, he was kicked out (for aggression). Good grief, I had no idea that could happen. So now, he's in an institution (they call it a developmental center, but basically it's an institution.)
I think people forget about those who have truly severe autism. People want to hear the stories about savants and Temple Grandin. I want to cry because my child isn't functioning well enough that he could even participate in activities specifically designed for special needs kids! Like special olympics! We can't do special olympics.

Thank you for sharing your story. It's about time people took off the rose colored glasses and read about the absolute suffering autism causes some individuals.

Sadvocate

This article both saddens and inspires me. Perhaps we - all of us us - should make a commitment to give pregnant moms and parents of babies a wallet-size handout with vital info about vaccine safety. What a difference that knowledge could make in a person's life.

Lin

Our love and prayers are extended to you and your family. Our family very much appreciates your courage in sharing your life with us. Autism and vaccine injury need to be seen for what they truly are. How can others know if we do not show and tell them? On behalf of all of the "Smiths" and those who will be fortunate enough to be able to avoid joining our ranks, our realm, our no longer exclusive club, because we keep marching on, speaking out and sharing our reality, a heartfelt thank you!

Heidi N

I am so saddened by your story. And what is the most upsetting is that I believe these problems were preventable and are treatable, but our current medical establishment is the reason our children get ill and the reason they are not getting well. We need to redo medicine. I say we rid all insurance, so doctors can go back to healing rather than doing what the insurance and pharmaceutical companies tell them to do. We do not have good medicine, and we can't continue on this downhill slope. The human race won't survive it. We need real answers, honest research and doctors who practice with their own minds instead of fearing doing anything outside of what the insurance industry says they are to do. Today's medicine has become a joke with all their diagnoses of "oh, sorry, there's no treatment for that diagnosis." Phooey. All diagnoses should be looked at from a medical angle. There is always a medical reason for every symptom.

Please don't be hard on yourself. It's so hard with daily trauma to focus on available options. You have experienced so much already. My secret weapon is prayer. I am sure you probably have yourself, but I say keep praying. Keep praying. No matter that he's not able to be in the home, still keep praying. We must keep our faith to get solutions to the problems we cannot solve ourselves.

Jan

my heart goes out to this family as we have endured some similar issues with Andrew for a few years in his early teens. Thankfully through the help up 10 to 12 hours a week of support staff, an excellent Autism Specialist and a fantastic psychiatrist. Andrew slowly improved over a persiod of about 4 years.
I can't imagine looking at a group home for Andrew after what I have been able to watch happen with my brother in Law (who has mild MR)in his group home. Constant staff change, and constant change of people living there. No choice or control about what to do or where to go because mostly they spend days sitting around doing nothing, also frequently staff who don't speak english and get maybe $8.00 an hour. It's terrifying to think of having Andy live in a place like that, even though I have no idea how I am going to keep caring for him as I get older.
I just hope that they were able to find someplace wonderful for their son.

mandy

We had to send our son out of area at the age of 13 years old he has severe autism and obesssive compulsive disorder - no one and all resoures were used to try and help but nothing worked.
We sent him out of area to a residential specialist autistic school, and have never looked back to be honest. We have had lots of contact (which is important) but because there was so much structure it helped allieviate all the stress on our son. He is on prozac which really helps too. But we cannot stress how much improvement this residential placement has given him - our main concern now is he is 19 and has to leave..... now this is when the other problem starts and it is very scary - they are now officially "adults" who may "lack capacity" and therefore are not your responsibility but the responsitbility of the Local Authorities, now this is where the nightmare can begin.... I hope this does not happen lots love and big hugs and wish you all the best <3 xxxxx

Bob Smith

"How in the WORLD will they find an appropriate, non-abusive group home for this young man? Seriously?"

Before we go to far down this thread of comments I want to say that TJ is in good hands and leave it there for now.

There will be a Part Three where we go into that mosh pit of emotions as we settled into our new "life".

Thanks for all the thoughts and prayers - but know they go to all the "Bob & Jane's" of this world as well as to us. We all value the support so please keep them coming. After all, encouraging a parent in despair to believe someone cares and tomorrow will be better may save a life.

Teresa Conrick

My thanks and gratitude to this family for sharing their personal pain and reality about having a child with an autism diagnosis. These kids and now, young adults, have severe medical issues and organizations of doctors, like AMA and AAP, are ignoring their plight.

Families are trying so hard to help their very injured kids but the stress on marriages,jobs,and mental health is vast. I hope the Smiths know that they are doing the right thing for their family. They have not given up but are needing help, something that we all are needing in all different shapes and sizes.

My biggest hope is that TJ's medical issues will be helped enough, in a very near future, to allow him to have a pain-free life no matter where he lives. This family, like my own, is a sad and illustrative example of what autism is to so many, years and years of not getting appropriate medical help from doctors and hospitals. The fact that these vaccine injuries are still happening is just insane and makes this heartbreaking situation all the more horrendous to those of us living with children in pain.

Prayers and hugs to this family.

Sue Morgan

How in the WORLD will they find an appropriate, non-abusive group home for this young man? Seriously?

Maurine Meleck

I too can relate to this story. My grandson has always been on the aggressive side as long as i can remember.
Bless you and your children. Maurine

Jeannette Bishop

To TJ and TJ's family, I don't have words, but I am hurting with you. The industrial, mostly "medical," assault on our families has to end.

nhokkanen

My heartfelt thanks to this brave family for sharing their son's life story, so profoundly painful physically and emotionally. These parents must feel as if they're in the eye of a hurricane -- shocked by the sudden calm, but looking warily about for the next onslaught of storms.

It hurts to think that these wrenching paragraphs are just a brief synopsis of their 13 years struggling almost alone with the aftermath of vaccine injury... yes, others in our so-called civilized society need to hear about this backlash of good intentions. These families on the brink need everyone's utmost help and support, respectful of their reality.

It is my wish that this family finds the peace they so deserve... in a quiet afternoon, an unbroken appliance, an unshattered window. And I hope the indomitable TJ views his additional new caregivers as more tour guides through life's grand adventure.

john willman

I found this to be an extremely moving, heartbreaking story that brought me to tears. I was stunned at how many similarities there are between TJ and "Rob", the non verbal autistic man that I have worked with for 8 years in the field of disability services. At 10 years old he became stronger than his mother and began having increases in aggressive behaviors. At 12 years old he received an Autism/Medicaid waiver and was placed in a group home. The sad irony is that what people with Autism need most is stability and consistency which they often don't receive due to high staff turnover rates and various chaotic living conditions created by placing up to 6 Autistic people in a home together. I think the Jones' were truly blessed to have the young man that worked with TJ for 4 years. In the field of disability services, that is longer than most stay in the field. But I completely understand that the Jones' had little choice considering the extreme behavioral challenges posed by TJ. The best advice I could give them now is to try to remain as involved as possible in TJ's life. Visit him frequently, and sometimes do so unannounced. if you can't visit, then call often. Grill his staff or management about the fine details of TJ's life (activities, behaviors, etc..). Even if you annoy the sh@t out of his caregivers, remain vigilant. I don't know what state they live in but I will say this; There are good, well run homes with caring staff, and there are also the opposite. And if there is an option of moving TJ to a supported living site, usually an apartment or home with 2 to 3 residents, do so. They are usually a better, more manageable setting than a group home which sometimes have staff to client ratios of 1 to 6. And on the subject of vaccinations, I recently received a Hep B vaccination. Before the injection, the nurse asked me to sign a waiver stating that i understood that Thimerisol(mercury) was in the vaccine. I told her that was NOT ok and asked if there was a Hep B vaccine that did not contain it. She answered yes, and explained that the multi-dose vials contained the mercury, but the single dose vials did not. I then had the realization that mercury was in the multi-dose vials as a preservative so that the clinic could save a few bucks over the single dose vials. So the mercury is totally unnecessary and used merely for a better bottom line. Unbelievable! I wish the Jones' all the best, and admire the dedication, tenacity, and love that they have given their son.

Jen in TX

Sad. And so familiar. I saw references to bowel disease...was exclusive elemental formula tried? Dr. Krigsman and I have differences of opinion on a few things, but if he had not placed my son on elemental formula, he also would likely have been institutionalized (or worse) because his self-injury and aggression was so out of control. Exclusive elemental formula (Splash) was a total game changer for us. May be worth a try, and I say that with full knowledge that every child is different, and mileage may vary, etc. etc.

kathy blanco

I can relate to this. LAst year my son had an explosion of PANDAS (thought we didn't know it was PANDAS), with not sleeping all night, following us around, throwing things, physically harming us (though with no intent to harm, more of a help me look). We contemplated placement, and I felt my souul left the building. Then, he had an event in ER after syncoping and required a pacemaker. After that we got our kid back. I am wondering if some of these gastro kids (which definately fits my son's scenario) are also suffering from blood loss to the brain, which can cause psychotic episodes! Please everyone, do a full cardiological exam, including an echocardiogram and a full thirty day holder device. I have told many parents to do the same, and they are shocked to find things like arythemias, conduction problems, autonomic dysfunction, etc. This makes me wonder also if chronic vein insufficiency is also found and should also be evaluated (my next step), as they found in MS. This would also cause short bursts of abnormal behaviors. I am not kidding when I say this.

Jenny

This is just heartbreaking. No parent should ever have to make such a decision.

@ Ann Dachel - Where to get the money, indeed. I've recently thought that it would be so helpful if instead of propogating a criminal society, if the government would stop jailing people and detroying their future income-earning tax-paying potential over low-impact, single person "criminal" behaviors, for example, possessing small amounts of marijuana or being homeless, and shift those funds to helping people in actual need, that our society could be much more cohesive and supportive? Of course that would mean taking on the whole circular, self-generating system of criminal intake and housing corporations that profit from unnecessary institutionalization. I know it could never cover the whole costs of truly needed services, but every bit would help.

barbaraj

I think many of us have this fear, I do, my beautiful (almost 11 yr old) could take this turn, or worse, my neighbor's son killed himself at 16. BUT, I watched my sister, and the struggles of having an autistic teen, yes, there was a level of violence and the language was straight out of "hell", by all rights he appeared to be in need of an excorcism, but it PASSED. IT PASSED! He is 21 now and not medicated! And yes, from 12 til 18 he was medically restrained, and while that is unfortunate, it will be done in the "facilities". While the docs, who recognise the set of serious circumstances at puberty post poisonous vaccines, have to fight to keep their licenses, these institutions rarely accept the cause as truth, and can't offer much help other than drugged control. What a painful story to read, and thinking that one day I may be there is terrifying. I'm just so sorry.

Anne McElroy Dachel


This is one of the saddest things I've ever read. TJ is but one victim of a medical experiment gone horribly wrong. Doctors have created a class of sick and disabled children who never existed in this country before. It's been the parents and school system that have had to deal with this nightmare. That's now changing. These children are aging into adolescence and adulthood. Their needs are greater and they will simply bankrupt social services. For years I've asked where these children will end up as adults. Who will care for them? And the biggest question of all--How will we pay for their care? TJ and others like him will cost the taxpayers MILLIONS OF DOLLARS--EACH! I'm convinced that it will be the money that finally makes autism a national emergency. When we're all paying for these children we'll finally ask where they're coming from.

Anne Dachel, Media

Harry H.

This is a powerful description of the Age of Autism.

Thak you, CDC, IOM, AAP, and all of Modern Medicine.

Benedetta

I would hate to think that the peds out there don't have a clue why or they are going to end up in Hell.

Benedetta

Is there anyway that this letter could be sent to his past pediatricians?

Mike

This story should be required reading for every idiot in Congress. The very real pain and anguish that comes through in this story is felt by every parent with a child on the severe end of the spectrum. NO parent should ever be put in this position and the thing that pisses me off most is that those in power continue to sit on their lazy asses and do nothing to address the cause of all this anquish or provide the services and supports to help the children, adults, and families struggling with autism every day. God bless you and your family and most especially TJ. I wish you all the best.

HONEYBOO'S MOMMY

I WANT TO CRY READING THIS. I AM SO FEARFUL FOR MY HONEYBOO AND HIS FUTURE SOMETIMES. THIS IS COLD HARD FACTS THAT AFTER PUBERTY THE SAME MAY BE INEVITABLE FOR MY FAMILY AND I DON'T WANT TO. TJS PARENTS YOU ARE BRAVE TO DO THIS. I DON'T THINK I CAN. ASK ME AGAIN EITHER IN TEN YEARS OR A FEW AFTER HIS PUBERTY OCCURS. HE IS GOING ON TEN AND ALREADY ALMOST AS BIG AS ME AND SO STRONG. PLEASE DON'T THINK IT INNAPROPRI8 TO SAY I AM SORRY FOR YOUR LOSS BCUZ TJ ISNT @ YER HOME NOW. I CAN ONLY IMAGINE THE PAIN OF GIVING HIS CARE TO THE ST8. YOU ARE BRAVER THAN I.

Andrea

What can be said after reading something like this? Anything I can think of seems trivial. Thanks for sharing this with us. God bless and look after TJ and his family.

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