Recently I wrote a post about a training school. I was a little apprehensive about writing the post because I know my friend Beth has had to place her son in a residential program for behavioral issues and safety. I know that there is a difference between an Institution (as the one in the late 60’s, described in the post) a Group Home and a Residential Program. I know she is trying to do what is best for her son and her family. I also know that she has to endure quite a lot of abuse from other parents about having to place her son in the program. Many treat her as though she is institutionalizing him or locking him away. This is hardly the case. She is trying to do what is best for her child with the minimal supports that are open to her in the rural area where she and her family live.
I know that this is not the situation she was hoping for, but in order to help her son and her family this was the only real choice that she had. She wanted to get the proper help for her son that they could not – try as they might – provide for him. She wants what every parent wants, a chance at a better life for him. This was not a decision she was happy about making, believe me – but she believes that this program is what is best for her son and her family right now. At this moment he needs more help than they can provide at home or in school.
I know that we can not judge other people’s children based on what we know about our own child’s Autism. To use the phrase once again – (I have used it plenty and I wish I knew where it originated) “If you meet one person with Autism, you have met one person with Autism.”
Beth and I had a conversation after I published that piece. Although I understand where she is coming from, she knows full well that many people do not. She agreed to let me use our conversation in the hopes that it may help people understand her situation. It was difficult enough for her family to have to make this decision without enduring the added pressure of other’s opinions.
Beth: “Unfortunately, it is still the only option for many parents to have their kids live elsewhere. If it wasn’t for my son’s aggression and property destruction, he would be living at home.
If there were better supports for people with disabilities to be able to stay in their homes and communities we would not need places like group homes and residential schools. The difference from back then <the time frame from the post> and now is probably the ‘reason’ for the placement. Now, it is usually a last resort after trying to support the person at home or because their needs are many and too complex to be supported at home.
Many people do not make the distinction from the training school/institution that you wrote about to the program my son is in. I have had so many other parents tell me they would never do “that” to their child. There are some horrible group homes and residential programs, not much different than an institution, just in a different location and given another name. There still needs to be a lot of change in providing better public school programs and home supports. We still have a long way to go in properly supporting disabled people in their homes and community. If that were happening we would not have had to outplace him like this”.
Me: Believe me, you were on my mind while I was writing it. You haven’t ‘done” anything to your child, you are doing what you hope is best for him and your family; because the rest of your family should matter as well. I agree, that people still do not make the distinction and there IS a difference, I know that. I wish more people did. I absolutely agree that there should be more home supports and school supports in place even if you do not live where it is convenient for people to get to. I would like to use this conversation in a post. I think the distinction needs to be made and can be made better by someone in your situation.
Beth: “That would be fine. I am doing my best to DE stigmatize the placing of a child in a residential school or group home. That is why I share our experience on Instagram. Too many people live in dangerous and unhealthy situations with their disabled loved one because they fear what will happen when they place them.”
Beth lives in a rural area where the school system could not provide the support that her son needed. They could not get or keep support in the home due to the distance many of the support people would have to travel. Many people are not in the position to pack up and move into an area with better supports in place. They visit him quite often. She is in constant contact with the staff and her son. He comes home for visits as often and for as long as he can handle. The goal here is to get him the help that he needs so he will be able to come home for good one day. To help him manage his anxiety and aggression so that he can come home.
They want him to come home…..
I can’t imagine being faced with that difficult, painful decision and I admire Beth for her courage in taking it for her child. Thank you, Vickie, for sharing her story.
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I could not image it either. I am sure she will appreciate your comment. Thank you for reading.
But she is still taking care of him, visiting, overseeing, bringing him home when possible. I know it’s not the same thing, but it reminds me of when we are no longer able to care for our parents at home. Sometimes the only option is assisted living or a convalescent home. But we are still in touch daily, visit at least weekly, check on them to be sure they are well taken care of, especially when they are not able to tell us themselves. Getting help to care for a loved one does not mean you have give up on them, or stopped taking care of them. Sometimes you need the help because you no longer have the strength or resources at home to give them the amount of attention they need. But if you have done our due diligence in finding a residence, and you continue to maintain control over the care plan, you have not abandoned them. You are there, stronger than you would have been, had you not made the choice to get help. You have the energy you need to spend time with your child in a setting where you can be his mom and not his nurse. You will be more alert to his needs and behaviors. No one should ever judge. No one but you knows your situation, your strengths and weaknesses, your exhaustion and agony worrying about how this is affecting your child and the rest of your family. No one knows what it is like to walk in your shoes. My heart goes out to you. You made a difficult decision that no one should ever have to make. God bless.
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You are absolutely right Sue. Unfortunately for her, many people do not see it that way. She will appreciate your support.