asd · autism · judging · listening · loving · PRTF · residential placement · RTC · special needs · support system

Residential Treatment & The Family

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When I posted this, I promised to share how I reacted when the Beautiful Mama made a general, public comment. Admittedly, I reacted very defensively to begin with and am embarrassed by that.

Please know, this post is not meant to make anyone feel sorry for us. It is not meant to be a pity party. This post serves a single purpose – Information. I want this post to give those around families like ours a glimpse of what we are really dealing with. Hopefully, it will help others understand what we are keeping bottled inside. 

The Beautiful Mama commented that she didn’t understand how a child with a serious illness has his family with him. His family is there to love him and comfort him during his illness, but a child with autism is different. Many times, those children are placed outside of their home and do not have the love and comfort of their family when they struggle the most.

In response, and please remember, my response was unnecessarily defensive, I said the following things.

My Initial Comments

  1. Maybe this will help you understand – 
  2. This was not our first choice. In fact, it was disgustingly painful, terrifying, and I have guilt that I pray to God none of my readers ever have to feel. 
  3. Comments (and honestly, the silence of some) from family members, supposed friends, and complete strangers make that guilt even worse.
  4. I call my son every single night! 
  5. My family has literally lost everything so that we can go see our son every other weekend. 
  6. We live in an extended stay motel. My husband’s job transferred us, but we didn’t have money to pay deposits, etc because every single penny we have goes to spending time with D. 
  7. We have only the absolute necessary and most basic groceries because each trip to see our son is the same as a month’s worth of groceries for our family. 
The Pain
  1. I hope to God you never know my pain.
  2. The pain of someone saying, “You have 3 kids?” and then trying to explain you have 4, but one isn’t home. 
  3. The pain of answering WHY one isn’t home.
  4. The pain of feeling guilty for watching certain movies or TV shows because you know your son loves them and he isn’t there to watch.
  5. The pain of not wanting to take pictures of your children because one is not there to participate. 
  6. There was the pain before making the choice of watching my 4 year old consoling my 2 year old and baby while I held my son during his rages. 
  7. Now there is the pain of hearing my 4 year old saying, “Mommy, I miss my big brother. If he comes home, maybe he will be a good boy and be nice to me. I’ll play whatever he wants to play if he can come home.” 
  8. And hearing her say, “Mommy, in my head right now I’m wishing my big brother home. I’m wishing so hard that he could come home right now.”
  9. The pain is immense, it is scary, it is overpowering. I pray to God that none of you ever have to know about it.
Some Things I Did Not Say
  1. There is the fear that insurance will stop paying any day. 
  2. The struggles of working through the appeal when insurance has had enough. 
  3. The guilt for silently rejoicing when my son has a bad day (it means insurance is more likely to pay for another week). 
  4. The excitement when he has a great day that adds to the fear insurance will not pay next week. 
  5. The concern that on our next trip he will have a difficult time on our off campus pass which will set him back in treatment, as well as causing the girls more PTSD symptoms.
  6. The concern that on our next trip he will have an amazing time and superb behavior on the off campus pass. It will be such an awesome success for him, will reassure the girls that he loves them and they are safe. It will also give the insurance another reason to stop paying. 
  7. The worry and fear that we might not have the money to make that next trip to see him and have an off campus pass.
  8. The fear of the unknown. What will happen if insurance does stop paying? Where will we get the kind of services he needs? How will we ensure we have the things he needs when he comes home? How will we ensure he continues to improve if he comes home before completing the program? Will we be able to find a therapist he connects with the way he has the therapist there; especially since he has never connected with another therapist? 
  9. And so many other unknowns…
I am ashamed that I did not take the chance to first find out that the Beautiful Mama was hurting. I pray that I did not cause her further hurt or anguish. I pray that from here on out I am able to be a support for her, but also that I have learned a lesson about compassion. Only because of her compassion for my situation did I get to be there for her. 
I pray that I will always lend a compassionate, loving, Godly ear and shoulder. 
I also hope that I have helped those who might be close to a family like ours. I hope that I’ve helped you to understand why we cannot go out to dinner, why we can’t necessarily plan a get together, why we sometimes can barely get up in the mornings. 
Families like ours are not looking for pity, we are looking for compassion and understanding. 

7 thoughts on “Residential Treatment & The Family

  1. Lena,

    What I have tried to do when I am especially emotional after someone's comment, whether in person or a blog, I take some steps back. I take a deep breath and I think about it. With that being said, I used to be (and still can be sometimes) an impulse reactor and just let things come out of my mouth like a gumball machine. It takes patience and restraint. You were and are hurting and one thing to know is that you aren't alone. Some things we right "move" something in the reader, on some issue/decision in THEIR own life and they react to what you say. I try to look at what people say with compassion because 9 times out of 10, they're hurting and sometimes worse than I am.

    I am so sorry for the pain you had to go through when making your decision and the pain you go through with every moment of every day. You are a good Mama, you did THE best you could and are STILL doing the best, otherwise you wouldnt be making the sacrifices you are making for your son and for him to get treatment he needs.

    Prayers for continued strength. Prayers for your Mama heart that aches. Thank you for sharing your heart on your blog…


  2. Thanks again, Erica! I think what embarrassed me so much is that I rarely react the way I did. I am much more compassionate when I say something to someone. When I realized that the Beautiful Mama was hurting the way I am, I was truly sick to my stomach. I am still so sorry that I reacted the way I did.

    I still think it's important for other people (those who have judged us or have asked questions that we can't quite answer in person/emails) to know the life we (collective we of families with children in residential treatment) are living. I know there are times that I seem completely disheveled and it's so hard to explain that when we are hurting in ways that I hope others never have to know about.

    Thanks again for your support!

  3. I cannot imagine wondering what your son is doing, what he is thinking. I only know that he is loved as much as any other child in this world. He is blessed to have you & your family.

    We are blessed to have him. What a blessing the compassion and faith you are growing.

    I love you baby daughter. mom

  4. The road you have traveled is one of the most difficult. Your sacrifices in the name of love for your son generate a deep empathy from within me. I can feel what it would be to step in your shoes. Not easy but deeply rewarding for the good days even though full of fear for what might be taken away.

    In the depth of the worry, the sacrifice, and fear, I see the unending stream of faith and love that is the foundation of all you do. I pray that someday your son will find the right treatment that will allow him to be safely reunited with you under one roof. I will continue to pray for that until I hear it happens. <3

  5. I love you too, Mama. Thank you for your support and love for us as we travel this difficult journey.

    Karen, thank you for your support as well. I do believe that he will be safely reunited with us and while it will be a slow, calm transition on the outside. I will be rejoicing and praising God with the biggest party on the inside! 🙂

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