Part 2 The Greatest Challenge: Autism and an Out of Home Placement
This is the second and final part of this series written by Bob and Jane Smith about their 13 year old son TJ. Read Part 1 Autism and an Out of Home Placement HERE. (Names changed to protect the family.)
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...Letters from family and friends were especially helpful in getting approval for placement. My sister wrote about us visiting my 77 year old mother.
“After his visits, she would often laugh about taking a week or two to find something he had played with and hidden in a secret spot. Lately though, his visits have been much harder on my mother. She would not tell Bob and Jane how it was affecting her because she knew they needed to visit and get away themselves. TJ has become more aggressive and two times he has been unhappy with something mom did and hit her. He did come back to rub her arm to let her know he was sorry. She would not tell Bob this because she knows the stress they are all under. After his last visit, she was so nervous she had trouble sleeping.”
My sister in law, a teacher who was inspired by TJ to get her Master’s in special education wrote:
First, let me say I have never known a more loving and devoted family. It is their strength and faith which is an inspiration to me. … Tirelessly, Bob and Jane have sought answers to never-ending litany of questions as to what had happened, how best to help TJ, and how to maximize TJ’s potential. Together, they educated themselves with all aspects of autism, became respected voices in the autism community, and all the while maintaining as “normal” a family-life as possible. However, this has been a constant struggle.
Attendance at extended family events has been extremely limited. Unfortunately, not all family members fully comprehend the meaning and extent of TJ’s autism. This has led to at worst, the family not feeling welcome at many family functions, or at best, dividing the events and either Jane or Bob would remain at home with TJ so the other could attend. For example, imagine having to attend the funeral of a family member without your spouse there to offer support or going to a family wedding while half your family has to stay at home because there is no “safe” place for TJ.
Our son Jim had a very difficult time writing his letter. It rambled somewhat, indicating to us that even Jim had a reluctance to also admit that it was time for TJ to be placed. But in his letter, he vividly describes the issues:
“I’ve seen my parents struggle with just about everything from financial problems, political issues, to family brawls. I’ve watched my friends faces as they listen to the sounds of my brother throwing a terrible fit, their eyes not only showing confusion and fear, but also of concern and wonder about how a family can keep control in a life of chaos.”
One of my best friends and a school teacher wrote:
“Bob and Jane believe TJ is often happy. I’ve seen him happy. But their family is forced to struggle with the very definition of happiness: what it is, how to maintain it. I have three children, and until I met TJ, I took the understanding of happiness for granted. I assumed I understood it. We know that we can’t always be happy, and that happiness comes from surprising directions. But Bob and Jane must constantly rework the definition of happiness for TJ. I’ve seen them agonize over this question. Is he in pain? Is he angry? Is he hungry? While the rest of us blithely go about our business, Bob and Jane constantly question the very basis of the relationship between parent and child … That takes a great toll.”
He later added:
“They are forced to make choices other families never even consider: Can we go to church? Will we be invited to a family Thanksgiving celebration? Can I stop for a gallon of milk? And often, the answer leads to another burden: they can do those things, but separately. Except for the times when I’ve been in their house, I’ve never once in eight years seen Bob and Jane together in public.”
Jane’s letter took the longest to write, and she went to bed quite a few nights in tears before it was completed. Finally, since it was to be addressed to our social worker of many years, she was able to write it as if to a friend, and included the following excerpts:
Thank you so much for your support for TJ and our family over the past few challenging years. You asked us to write about placing TJ in a group home situation. As TJ is asleep right now, I will take to let you know why I feel that placement in a group home setting is in the best interests of TJ and our family.
The main reason I feel that TJ’s placement should be a group home is sheer exhaustion on our family’s mental and physical capacities, especially Bob and me. While TJ’s 15 year old brother Jim has grown up and accepted more responsibilities than most children his age, Bob’s and my preoccupation with TJ’s needs has taken away from Jim’s social friendships and school activities that parents should attend.
As you know, TJ’s challenging behaviors began in the fall of 2007. At that time, TJ became self-injurious (putting his hand through windows at least 7 times) as well as violent toward the school personnel, his caretakers and his family. The violent outbursts coincided with the development of his stomach and bowel issues. TJ’s severe self-injurious behaviors began in October of 2007 (as well as his long tantrums and violent outbursts). By November 2007, the school gave up trying to teach TJ and just tried to get by day to day, more of a babysitter than anything. We lost caregivers at home as well, leaving only David (our one remaining caregiver), Bob and me to deal with TJ. We could not take TJ on outings for fear of him striking out against strangers. On multiple occasions, he has attacked me as I tried to drive the car. Many times I have sent TJ’s older brother Jim to stay with his friends for a week or so at a time, for fear of injury to Jim.
With hindsight being 20 / 20, I can see now that I should have been a more forceful advocate for TJ with this doctor or switched doctors earlier. TJ’s stomach and bowel issues were ignored by this doctor in favor of stronger and stronger doses of behavior medications. TJ not only continued to strike out, but learned that violence or the threat of violence would get him what ever he wanted, because everyone was either afraid of him or wanted to avoid escalation of behaviors. The school allowed him to choose all his own activities to avoid confrontations. We pulled him from school because this doctor had no idea how his body would react to the stronger and stronger doses of medications. After months of increasing dosages, it became apparent that the medications did not work and we again requested a referral to a GI doctor. She again refused.
We then decided to take TJ to the GI doctor most recommended by our friends with children on the spectrum and GI issues, completely out of pocket. It was the best thing we ever could have done for TJ. We discovered that he had severe acid reflux, very low motility causing his severe constipation and inflammatory bowel disease. When TJ was in pain, he would strike out.
Unfortunately, the last two years have been spent trials of different drugs to control pain, some of which cannot be used long term and the pain returns. We are still trying to find the best combination of drugs for TJ. When drugs fail or his condition worsens, TJ strikes out again. The attached pictures show some of the damage to our home. We have replaced 6 toilets in the last year; we have lost 12 kitchen and dining room chairs, 8 televisions and 6 VCR / DVD players; most of the cabinet doors in the kitchen and bathrooms are beyond repair. The holes in the walls and doors are numerous and TJ has been putting food in them, creating issues with bugs. We will need to pull the drywall in almost every room. We no longer have the resources to pay anyone to fix our home and we do not have the time to do so.
As for being a family Jane later added:
Our family is constantly split. It has been three years since we have been able to take TJ to one of Jim’s swimming meets to watch together. We have never been able to take TJ to Jim’s band concerts, so Bob and I split who gets to go. It is the same with parent teacher conferences for Jim. I missed three of my uncles’ funerals this past year; I made it to two by myself. Bob takes care of TJ so I can celebrate Christmas with my family; I take care of TJ so Bob can celebrate with his family. We used to stay at my mother in laws house, but at age 77, she is too frail for us to bring TJ anymore. He hit her at our last visit and went out of control breaking and throwing things.
Bob and I are bone weary and exhausted and this is not conducive to helping TJ learn that even if he is in pain, he does not need to hurt himself or others, there are alternative ways to tell others and to deal with pain. Right now we are doing what we need to get by without getting hurt or having TJ hurt himself. We no longer have the energy to repair the walls, the plumbing, the electrical as well as maintain the cleanliness and appearance of our home. It has been three years since I had the time to clean out the cupboards, over a year since I had the time to clean out dresser drawers and closets. I am averaging 5 hours of sleep per night and not functioning well during the day. It is a similar situation for Bob. Even when TJ sleeps 8-10 hours, we still need to get up for work or cleaning or cooking.
Jane ended her letter with the message that TJ did not simply “have autism”:
TJ never means to hurt anyone – after he hits us or himself he rubs the areas so sweetly and apologetically. He is so cute when he has just gotten his hair cut, you would not think there were any issues with him.
But his medical issues are numerous:
Severe Autism
Mental Retardation
Apraxia of Speech
Failure to Thrive X3
Mitochondrial Dysfunction
Absorption Issues
Acid Reflux
Inflammatory Bowel Disease including bouts of severe diarrhea
Severe Constipation due to low motility
Urinary Incontinence Issues
Severe Allergies
We love him with all our hearts. This is the hardest thing for me to do, to request out of home placement. In my mind I know it is the right thing and the best for everyone, but my heart is breaking.
Epilogue
TJ moved to his new home on April 1st, 2011. He seems to be adjusting well, in great part because our caregiver is so devoted to his friend, TJ. His plans changed so he decided to take a job with the group home (at a lower wage) because he wanted to see a successful transition. Although he works with the other children in the home as well, he is there to help others best be with TJ and continues to lookout for his best interests.
Jane and I get to be husband and wife again, as opposed to full time caregivers. We have not missed going to see TJ a couple times a week, and have had him home a few times as well. Is it working out perfectly? Of course not, and we never expected it to. There is also that little feeling in the pit of our stomach to deal with. I suspect that those who have had to put their elderly parents in a nursing home experience the same feelings, but we have come to realize that we really did do the right thing for all of us, especially TJ. We wrote this piece in order to help others understand that while it is never going to be easy, the transition to out of home care IS going to happen for most of our children. We only hope that it will inspire confidence and optimism, replacing the hopelessness that many of us have felt on our darkest days.
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Bob and Jane live in the United States and their story is likely the same as many thousands of other families around the world living with a child with severe autism and untreated inflammatory bowel disease. They wonder what our children’s lives would be like if someone would have listened to Dr. Andrew Wakefield and researched the most effective treatments, instead of attacking him those many years ago.
@Thom Moriarty - you are a good man .
I don't cry , but my eyes are wet reading your post .
Posted by: Hans Litten | March 31, 2016 at 11:38 AM
To all: The story of "The Smith's" is indeed a heart-breaking story and one that is being faced by many families with autistic children in America today. Our story is not so severe but we are now at a point with our 13-year old autistic grandson, who is also beset by severe OCD, that we are facing this very same decision - do we keep him in our home where his behavior is becoming increasingly aggressive and poses a danger to my wife - his grandmother - who cares for him, along with his mom - our daughter - and I. I am still employed full-time and provide all of the financial support to our home. Our daughter works part-time and this allows her to have health insurance for herself. Like so many mothers of autistic children, she has been a single parent since not long after her son Ryan was diagnosed as autistic and Ryan's father abandoned her and his son. He quit paying child support over two years ago and has had no contact with his son at all in over 8 years. Our daughter and grandson live with us because she cannot afford a place of her own. There are only three people in Ryan's world: his mom, my wife, and I. Now I want to address the "gut issues" that seem so common with autistic children. Our grandson Ryan had these almost from birth and our daughter took him to so many doctors it wasn't funny. None of them did anything to help and almost all of them thought that our daughter was just being a nervous first mom. Well, lo and behold, when Ryan was 7, he had a severe problem and we took him to a local ER and the doctor there tells us that he thinks he is suffering from pancreatitis and he calls an ambulance and Ryan is transported to a local children's hospital where the diagnosis is confirmed. He spends 30 days in the hospital in excruciating, agonizing pain. Over the course of the next 6 years he has frequent recurrences and when they are severe enough, he spends several days in the hospital and then comes home only to have the problem reoccur again several months later. After 6 years of these regular attacks of varying severity, 54 days ago now, he has another SEVERE ATTACK on February 7th, 2016. He is brought to the hospital and admitted BUT the doctors are not able to do anything for him but to try and ameliorate his pain which is absolutely off the charts. Our grandson is SUFFERING like no human being should ever have to suffer. If he had been an animal he would have been euthanized. I have never seen a human in such pain. Even morphine could not stop it. And then our miracle happened. On March 15th 2016 Ryan was MEDEVAC'd by air ambulance to the University of Pittsburgh Medical Center Children's Hospital where on March 17th he underwent a TP/AIT surgery that saved his life. SAVED HIS LIFE. He was dying a little bit each day due to the deterioration of his pancreas inside his body over the past six years and I have the picture to prove it. His pancreas, gall bladder, spleen and appendix were removed and the remaining good islet cells in his pancreas were extracted and transplanted into his liver. He is now on Day 54 of his hospitalization and on Day 14 of his recovery from surgery. He is alive. He is still autistic. He still suffers from severe OCD. BUT - we are hopeful at this point that his severe "gut issues" are over as this surgery seems to have been very successful at addressing the chronic pancreatitis that was indeed killing him. And we owe it all to an ER doctor who took the time to care and to correctly diagnose what was causing Ryan his "gut issues." The psychologist at the hospital has recommended to our daughter that she consider placing Ryan in a residential treatment facility because, as she rightly pointed out, "What will Ryan do after the three of you are gone?" And she is right. We all worry about that BUT we also worry about the potential for Ryan to be abused. There is nothing I would not do for my grandson and I would love nothing more than for him to have a shot at a life where he can stand on his own and be independent and know that after the three of us are gone - which will happen one day - that he will be okay. So we are talking about all of that right now and will have to make a decision at some point. BUT - I wanted to let all of you know that you may want to have a doctor consider the possibility of chronic pancreatitis as a possible cause for your child's "gut issues." For the first time since his first attack 6 years ago we now have hope that at least one thing that has troubled him so greatly may no longer cause him so much pain and anguish and that it may even help with some of his behaviors because even a normal person who is in constant pain would exhibit bad behavior. And our grandson was in the kind of pain that few humans could stand. In closing this post I would like to thank the doctors at UPMC Children's Hospital who literally used their gifts as surgeons to save our grandson's life. Despite all of his troubles and all of the difficulties associated with caring for him, we deeply love him as a member of our family and we are so grateful that these doctors agreed to help him with this surgery. He might have lived another 30 days without it. I pray that perhaps others will be able top find a solution to your child's "gut issues" which commonly accompany autism. May God bless us every one. Thank you.
Posted by: Thom Moriarty | March 31, 2016 at 11:01 AM
wish you had given more detail of what is what like at the group home for tj.. the ups and downs, the call, the things you would do differently... policies.. cna's.. how was he kept from leaving the premises. etc.
Posted by: Deborah crowe | January 24, 2016 at 02:55 AM
Having been through this myself, after saying that I would never do it- all I can say is please do not presume to judge those of us who have made this difficult choice. It is not made easily or casually. I went into a very serious depression afterward and still many years later cry over it. Even realizing that it ended up being the best thing for all of us. My son is happier and much more comfortable in this environment. He has people who care about him and who care for him but since they only work 8 hr shifts, they are not continuously exhausted and at the end of their rope as I was. We all make choices in life and some of us make very hard choices. Some day all of our children will be cared for by someone else as we will no longer be able to do it or will no longer be here. I chose to have that happen while I was still around to suervise his adjustment and make sure the care he gets is good for him.
Posted by: Sue | August 21, 2011 at 08:51 PM
Those behaviors that you describe sound like PANDAS. Did you take him to a PANDAS specialist to have him evaluated. Also investigate lyme, especially Borrelia. Once the infections are under control the behaviors improve.
Posted by: Autism mom | August 21, 2011 at 04:19 PM
wow, we are going through this right now. It kills me to have to place my 17 year old son in residential placement but we have run out of options and money. We have done biomedical treatments since he was two with some success but unfortunately not enough. We live with daily destruction, attacks on me/siblings/teachers, self injurious behaviors but at other times a real sweet and loving guy. I pray he will be happy in his new home away from home, make friends, get behaviors under control, learn how to read and write and most of all not be abused or neglected. We will visit as often as we can and once he's settled, bring him home for weekends, holidays, vacations etc. It brings me some comfort that this is also a way for him to have a better life and be able to function as an adult when we're no longer around. That one readers comment is so ignorant and aggravating. NOONE makes this decision easily.
Posted by: MC | August 21, 2011 at 01:36 PM
To emilys mom:
Obviously you did not read either article. TJ's medical issues WERE treated, with many modalities, thanks to his parents' persistence. They've studied and traveled far and wide at great expense. Reread the article.
By the way, you DO let strangers care for your kids -- they're called teachers. It takes a village, remember?
It's clear that these parents ARE missing their son, and their hearts hurt far more than we can imagine. But they've had 13 years to assess the evidence and tally the damage and analyze what the future will be for all the family members. Thank heavens that all four are still alive and the children are being cared for by a team of supporters. There but for the grace of God....
Sadly, emilys mom, in addition to your inability to use an apostrophe, you also have an inability to empathize. That's a very scary deficit. Maybe your numbness is a coping device. Maybe you get through your days by stifling your feelings. If that's the case, I pray for your child's sake that you do not snap and create another horrible newspaper headline.
It takes a wise person to recognize human limitations. That is what TJ's parents have done. They deserve our thanks and support.
Posted by: nhokkanen | August 20, 2011 at 07:41 PM
Right now there are only a handful of TJs in any given area of the country. In five years we'll be hearing about dozens, then hundreds, thousands,... Wait until we have so many coming that waiting lists are filled. Still they'll keep on coming. We'll have somehow provide for a generation of sick and disabled young adults. This one heartbreaking story will be commonplace. Will autism finally get the attention it deserves?
Anne Dachel, Media
Posted by: Anne McElroy Dachel | August 20, 2011 at 10:51 AM
This is heartwrenching reading indeed. This family and all of the families who are dealing with the terrible trauma of autism deserve so much more help from our local, state and federal agencies. No one should have to live like this. It makes me so angry that modern medicine continues to destroy children and cause so much suffering. These stories must be made public. Most people who are not personally affected by autism don't give it a 2nd thought. The stories on this site have opened my eyes to this tragedy, but a million more eyes need to be opened. My heart goes out to everyone whose lives have been ruined this way. I have questioned whether there is a heaven or hell, but reading these stories makes me hope that there is a hell deep enough and hot enough to accomodate all of the perpetrators of vaccine induced autism.
Posted by: CT teacher | August 19, 2011 at 11:36 PM
Vicki:
My daugther works at one of those psych hospitals and she said the rules are that the kids they work can not be under a certian IQ.
I remember you writing that SSI will never help as long as the kids have an IQ above 70. You are very right about this.
But on the other hand if they are below 70 the psych hospitals will not take them
Posted by: Benedetta | August 19, 2011 at 07:47 PM
I've read both parts and I see that they did try meds for behavior control. But I didn't see anything about trying either inpatient psychiatric hospitalization or a residential treatment center (RTC). The reason that these hospitals exist and that RTC's exist is that some children and teens do need this longer-term treatment, both in terms of adjusting medications and working on problem behaviors therapeutically. RTC can be as short as 1 - 3 months and as long as 1 - 2 years. As a parent who used both while my son was growing up, I know these aren't right for everyone...but they can make a huge difference for those who need them. Have I been hit? Yes. Have things been broken? Yes. But I NEVER forced my family and myself to live in the kind of situation this mother describes without turning to hospitals and RTC's for help. If I couldn't keep my son safe and my family safe...then it was time to seek other assistance. I absolutely don't begrudge the mom her choice to now place her son in a group home...but I have to wonder if she could have sought out shorter-term placements earlier. Sadly, I watched this happen to another family a few years back....refused the shorter-term treatment options for years, then finally said, "Enough!" and placed their son permanently. I would encourage parents to seek out and make use of all of their options rather than trying to be heroic by dealing with a level of abuse that no one should have to live with. Not good for the family...and not good for the child who is so frightened to be that out of control.
Posted by: Vicki Hill | August 19, 2011 at 05:54 PM
Good Gosh Rita;
I am exhausted just reading your story, you have super human strength to have lived through it. I am so glad that your story has maybe not a happy ending but one in which horrible issues have been resolved.
Posted by: Benedetta | August 19, 2011 at 03:30 PM
Rita,
Thank you for sharing your story. Someone will undoubtledly identify with your story and it may help them move forward in their own situation. Just to know we are not the only ones helps. You are an amazing woman and mom. Glad things are better for both you and Tyler.
Posted by: For Rita | August 19, 2011 at 01:53 PM
I am not easily shocked, but "emily's mom"'s comments did it. Teresa Conrick and others gave appropriate rebuttals, but please add me to the list of readers that are absolutely appalled by her callousnous towards the Smiths.
I have the utmost respect and compassion for what the Smiths felt they needed to do.
Posted by: Sylvia | August 19, 2011 at 01:19 PM
emily's mom-
It must be nice to be so critical of others. Where do you get that group homes are for sociopaths? How biased are you that only husbands could get fed up and leave? And this is all you got "So what you missed 2 uncle's funerals?"
How do you deny this? Unfortunately, this is not ..." to wake every day to see your loved ones face"
-TJ has become more aggressive-
-has been unhappy with something mom (77 years old) did and hit her-
-no “safe” place-
-family brawls-
-severe self-injurious behaviors-
-violent outbursts-
A family is being torn about and their child is causing harm to himself but also each family member- physically, mentally, emotionally and spiritually.
Caring for medically ill people is hard, really hard especially when it is chronic BUT throw in rage, assault, unpredictable behavior, nonverbal ability, cognitive impairment and that is a recipe for insanity.
This family needs to do this and it is not for you to be judge and jury. They have not abandoned him for others to care for him. They have moved him to a place where he can be kept safe and still have relationships and hopefully build even more with the staff and other housemates.
The lack of compassion and understanding is appalling! Please direct your anger and indignant attitude towards the parties responsible for creating and prolonging this child's pain and this family's heartache - not the parents but the vaccine manufacturers, government individuals/organizations, and medical
personnel/organizations.
As a community, we should all be supporting each other and not judging or condemning our fellow travelers. Their journey has been tremendously hard and they need help.
Posted by: Teresa Conrick | August 19, 2011 at 12:48 PM
I was so happy to hear that David, TJ's long term, devoted staff, transfered to the group home to help TJ. Having worked in the field of disability services for 8 years, I cannot overstate just how beneficial it is to someone with Autism to have a devoted, caring, consistent person in their lives. It can make all the difference. And to the Jones', remember to be rigorous in getting information from group home management about all aspects of TJ's life. Keep them on their toes. I also have to take exception to a previous poster's comments. First of all, caretakers do not have the liberty to dope someone up whenever they feel like it. They must absolutely adhere to the prescription the doctor prescribed. If they don't, they can face serious legal consequences. The community where I work also has a Human Rights Committee that can veto a doctors orders if the prescription causes excessive chemical restraint. I also don't think that the previous poster has any idea just how powerful post-puberty and adults with Autism can be, especially large males. Dangerous, violent events that I have witnessed or have knowledge of include, but are not limited to; breaking car windshields with one punch, ripping seatbelts from their anchors, punching through doors until they were confetti, throwing large pieces of furniture, injuries including broken noses, cracked ribs, bruised lungs, compound arm fractures, broken jaws, and worse that I won't describe. Every client served by our agency has a medication reduction plan that is to be implemented if the client's behaviors decrease over a period of time. I would like nothing more than to see everyone in the world with Autism be free of chemical restraints, but I just don't know if that is realistic. Sometimes you have to pick the lesser of 2 evils. And again, my admiration and respect for the Jones' in their devoted love to their son.
Posted by: john willman | August 19, 2011 at 12:15 PM
Emily's mom,
Your post seems so callous and cold. I'm feel nothing but compassion and empathy for the Smith's they have done more than what is humanly possible caring for TJ. They are suffering with their decision to remove him from their home. They wanted to care for their son, but it became impossible to the detriment of the entire family. No one is winning here or getting the easy way out.
Please exercise compassion. I can't help think of Trudy Stuernagel who tried to keep her son at home and what happened there. We all must do what we feel is right for ourselves and our children's safety.
My heart breaks for this family and what they had to do. Please reserve your judgement. This story made me realize we are fortunate. My son is on the lower functioning end but he is not destructive. He makes messes. Messes that can be easily cleaned up. And his aggressive behavior associated with his pain has been manageable mostly.
"Don't judge another until you have walked a mile in their shoes"
Posted by: For Emily's Mom | August 19, 2011 at 11:59 AM
~"Make no judgments where you have no compassion." - Anne McCaffrey
Posted by: mary s | August 19, 2011 at 11:19 AM
My own son's story is very similar to TJ's. My son Tyler had significant, unmanageable, unsafe behavior as well. I couldnt even so much as stop at the grocery store, with out him having a total melt down in the asiles, as I try to grab a loaf of bread. I was a single Mom. I had no financial or emotional support from my X-husband. He abandoned his special needs son at a very young age.
~My son was teasted badly in public school. He was pulling out his eyelashes and hair. he was bringing steak knives to school in his back pack. He was unmanageable for the school, and for us at home. He would have violent rages that required restraint. In the violent rages, I was the one usually getting hurt. It was exhausing on a daily basis, as I never knew what trauma the next day would bring. My son went countless times to the emergency room in 4 point, leather restraints, needing shots of haldol to sedate him from the uncontrollable raging fit. He had multiple Psychiatric hospitalizations. I was always told they could not help him because of his diagnosis of mental Retardation. He has had a history of gut issues. Today, at 20 years old, he has issues, although he is not telling me.
~I remember one incident, the turning point of my life was my fiancee and I were seperating. He could no longer handle my son...and he tried so very hard. I was moving into a town house that I had just bought. The night before my move, while at work(I am a Registered Nurse)my son was left in the care of my Mom, (who temporarily,in a wheel chair do to a badly fractured leg)...ok...why leave him in care of someone who cant be all hands on deck?.....he was kicked out of after care programs...and no one would baby sit for me....it was, literally go on welfare...or ask grandparents to help with him.....back to the story......my son assaulted my mother, and ran away from her home. It was a below zero temp night, and he wore a t-shirt and shorts when he ran out the door. The police came. They found him and he was in a fit or rage. They took him to the local ER, who...by this time....knew him by first name. They called me at work(I worked as an ER Nurse, at the time, not the local ER, but one far away) My blood pressure had shot up to 204/104. My own doctor wanted me to seek treatment. I had reached my breaking point. I called the ER where they took my son, and told them to place him. They filed abandonment charges against me. The next day, a woman from CPS brought my son back to my house. She stated, "We cant place him. He is a danger to every one, and every family out there. He needs to come home to you." That Monday morning, I had to go to court to face the abandonment charges. I told the judge my long story with my son. No one could believe the horror I had been living. The struggles I endured just to hold a job and proper health insurance for our needs. The judge ordered "Respite to start today." There was a subsiquent hearing to get him placed into a Residential treatment facility, for Developmentally Challenged kids. I jumped at the chance to get him a program where he could learn how to properly behave and adjust in society. He was not learning from an exhausted, completely emotionaly spent single parent.
~Since starting Residental School, my son has made significant progress. I have done a lot of emotional healing. We have positive, at home visits. If there is significant behavior, I can bring him back to school, where as they can handle him, and get him back on track. My son is almost 20 years old now. we elected to start him on a medication that was recommended by his psychiatrist. It is making a big difference. The raod to get here, to an acceptable place, has been nothing short of traumatic, difficult, depressing, exhausting, and the worst emotional toll on the entire family. But the benefits of Residential placement have been that my son, and the family were able to grow, be inspired, heal....and most importantly, move forward in a positive way.
Posted by: Rita Marie | August 19, 2011 at 10:36 AM
I read the story and the comments and I still don't get it. So what you missed 2 uncle's funerals? Your child is not a sociopath...he has medical issues that need to be addressed...drugs for behavioral issues?? isn't that a band-aid? Isn't that for you? Not for him. As a parent I would do anything for my child but I just don't get " for the wellbeing of the rest of the family" lets put him somewhere for strangers to take care of him. Most marriages end in divorce when the going gets tough the husband leaves; doesn't want to do the work involved, conveniently forgetting the "for better or worse" part. That I don't get either...how do you not want to wake every day to see your loved ones face, your own child's face every morning? Holes in the walls? Financial ruin? So what I say. What about the pain this kid must be in to do that? If you don't help him with the underlying pain then who will? The "caretakers" at the home with drugs...no, they'll just dope him up with a good drug cocktail so they won't have to deal with it. In closing, I think parents should take care of their kids for better or for worse also. Sorry.
Posted by: emilys mom | August 19, 2011 at 09:51 AM
Thank you so much for sharing your story for the benefit of others who may eventually end up following a similar path. I wish only the best for TJ and your entire family.
(And I also wish this story was required reading for every new parent, every pediatrician, everyone at CDC, AAP, AMA...anyone who continues to insist that the benefits of vaccination still outweigh the risks.)
Posted by: Donna L. | August 19, 2011 at 09:00 AM
Thank you for sharing your story. It has helped me tremendously. As my child is in her teens and with similar issues. I don't know what her future holds but she will one day have to transition out of the home. I will always remember your story and it will give me much needed strength.
God Bless you both and TJ.
Posted by: Michelle | August 19, 2011 at 08:46 AM
Thank you for sharing your important story. I couldn't agree more with your statement regarding Dr. Wakefield.
Blessings, Maurine
Posted by: Maurine Meleck | August 19, 2011 at 08:07 AM
Again, thank you for sharing this story. What an amazing person David is. To take a lower paying job at the group home to look after TJ and help others learn how to interact with him. That kind of devotion is so rare.
I wish this entire family the best. I think they are doing the best they can.
Reminds me of what Katie Wright said in "Autism everyday"....we are judged more harshly than other people....we are expected to do things that no human being should be expected to do...
Posted by: Andrea | August 19, 2011 at 07:56 AM