...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:
Apraxia of Speech
Failure to Thrive X3
Inflammatory Bowel Disease including bouts of severe diarrhea
Severe Constipation due to low motility
Urinary Incontinence Issues
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.
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.
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.