cone-of-silence_0

I am really dating myself, but my favorite tv show to watch when I was a child was “Get Smart”, a spy spoof where Maxwell Smart comedically played an agent who always “got his man”, even when he didn’t know how he did it! I relate so well to Maxwell Smart and his “methods”, because my life is been pretty much the same!
But their infamous concept, the “Dome of Silence” flittered through my mind recently in an unpleasant way, a way that made me change my thoughts in a major way.
My daughter, Marie, who is deaf, has been hospitalized again. For parents of children with severe psychiatric disorders, y’all know that hospitalizations are a recurrent theme, no matter how well a child seems to be doing. Life with such a child is full of peaks and valleys, and sometimes the valleys need a tune up. As conscientious parents, we probably all play the same game…do we visit every day? Do we bring food and drinks? Games? Puzzles? In other words, do we turn each hospitalization into a reward for being there?
My brother’s schizophrenia emerged when he was just emerging himself into young adulthood at the age of 18. This was a surprise disability on top of his already existing developmental, vision and hearing disabilities. As my parents aged, he eventually lived in a wonderful group home, but HE also needed “tune ups” in a psychiatric hospital, generally after an incident where the aliens told him to walk ten miles to the train station, or throw himself against the wall as punishment for some unknown offense. These hospitalizations were regular, and each and every time my mom would visit every day, bringing with her his favorite desserts, or a milk shake or ice cream sundae. Her heart ached to see him in the hospital so often, so she would sit there for hours with him, holding his hand or rubbing his back. It made her feel better to visit with him, and it made him feel better also. In fact, it made him feel so much better that the frequency of his “tune ups” increased. I learned as a young adult that being in a psychiatric hospital should not be rewarded with food and puzzles, or even with visitation every day.
I have tempered my need to mother my daughter with the need not to make inpatient hospitalizations seem better than the residential school in which she lives. Following my own instincts, which were reinforced by Marie’s social worker and psychiatrist, I have limited my visits. Yesterday, however, I changed my mind.
The hospitals have all been wonderful at providing ASL interpreters for at least 12 hours a day, which facilitates her conversations with nurses, social workers, unit workers and her psychiatrist. Marie does not, however, want to utilize the interpreter in conversations with other children. She tries to fit in with them, but does not understand what they are saying or laughing at. Being somewhat paranoid, (aren’t all teenagers?) she suspects they are laughing at her. She tries to join in, and they may include her for a few minutes, but soon the conversation continues over her head, and the children are once again laughing and joking and not including her. As I was leaving yesterday I witnessed this happening, saw the look of sadness in Marie’s eyes and noticed that she was holding back tears so as not to further embarrass herself in front of the other children. She looked so alone, and in reality she was. The other children were under a “Dome of Silence”. She could see them talking, gesturing and laughing, but could not hear or understand what they were saying. I don’t know why this obscure reference came to mind, but it did, and the visualization of it has changed my way of thinking. I realized that her isolation from others trumps the need not to reward her for being in the hospital. Nothing in the hospital could be a reward for her, as she is not part of the community as she is in her school. If anything, one would think she would be so adverse to being in the hospital that she would do anything in her power not to be hospitalized. Ah, the irony of that nostalgic “Dome of Silence.” I think I will visit for a few hours today and bring her a milkshake. We will sit there and “talk” in ASL and I will hold her hand like my mother did with my brother. She will no longer be sad and isolated, at least not during my visit…

********

To read more about our life, here is a link to my book:

https://itunes.apple.com/us/book/the-apple-tree/id538572206?mt=11

The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane

Link to the Readers Digest review of my book:  http://www.rd.com/recommends/what-to-read-after-a-hurricane/

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Comments on: "Under the “Dome of Silence”" (55)

  1. Jackie Saulmon Ramirez said:

    Mental illness, in its many guises, is an ever-present weight to shoulder. Good luck.

  2. Wow that’s tough. I’ve been reading Andrew Solomon’s far from the tree book and he talks the deaf in there. It really gave me a great appreciation for what their world is like. That’s one tough kid to be strong through all of that. Your a great Mom for staying by her side.

  3. Oh , my heart broke for you and for Marie. The pain of mental illness is deep; the pain of being excluded is also deep. I admire your willingness to follow your mother’s instincts and change your course to help your daughter. I know you will both feel better for it. I wish you both the best.

  4. Reading this, I am reminded of all the choices we make as parents. I remember the miserable hours, years ago, when I was supposed to let my baby cry it out and the turning point when I gave into my intuition and held her, for the good of both of us. At some point, we stop listening to others or lessons of the past and start being the parent we need to be – for our child and for ourselves. It’s a lesson I have to learn repeatedly.

  5. reinventionofmama said:

    Bless your hearts. Sending up prayers for you both today.

  6. It’s the small kindnesses that count. She will appreciate you being there.

  7. I am so sorry. My heart hurts for both of you and my eyes fill with tears. May God give you both new strength for the journey and new assurance of His presence with you.

  8. You’ve given me a lot to think about. We’re currently on a team helping a refugee family at our church. We helped resettle them 5 years ago, and now the youngest daughter (19) is in the local psychiatric hospital with possible schizophrenia. She has been getting visits every day from her sister with one of us along. The sister has been bringing food she likes, clean clothes, etc. This girl’s situation parallels Marie’s in the sense that she is not fluent in English, although in her case she is catatonically mute for the most part. I’m not necessarily rethinking the daily visits (which the clinic seems to be okay with–and they actually want her father to visit more), but maybe dispensing with the outside “treats.” She definitely wants to come home, though, so it’s not like being in the hospital is a treat. It’s just a lot to think about, and there’s no handbook for this!

    I’m so sorry you’re having to go through this with Marie, sorry she has to be sad and lonely, but I’m glad for both your sakes that you realized where you fit into this scheme! I’m sure your love and support will do worlds for her recovery.

    • If this young woman is still in active treatment for possible schizophrenia, it makes sense for you and her family to visit so she has the support, especially because of the language barrier. The type of treatment my daughter (and my brother) had was “maintenance” type. They were both stable and different medications were being tweaked. AND they both lived in residential facilities, which I think is the major difference. If going to the hospital is more rewarding for them than living in their residential facilities, it can cause a problem.
      I know there is no handbook for situations like this. It is all hit and miss…I just hope that I get it right, and if I don’t, I just try again the next time!

  9. As someone that spent long days, weeks, and months hospitalized, I’m not sure if I welcomed visitors or not. It was comforting and pleasurable, but it also increased the pain when they left or when they didn’t come to visit. I never knew which day someone would visit and that made it more difficult. It was the “not knowing”. If I wanted a visitor, they wouldn’t come. If I didn’t want them, they would visit. One week I got cards from all my fellow students in the sixth grade. When I was feeling lonely, I’d get them all out and re-read them. It helped.

    The hardest part was after school was out and summer was in full bloom. There was a basketball court a couple stories down and under my window. I listened to them play as I lay in my bed. I couldn’t see them but I could hear them and my mind went there to watch. It was bittersweet. In fact, that sums up my experience. I was getting treated for the several defective things with my body but I couldn’t be where I wanted to be, when I wanted to be there.

  10. Oh and thank you for sharing “the Dome of Silence”. As you might note, it caused me to reflect on my experience.

  11. What a difficult decision in such a sad situation. Praying for you both. Bless you for sharing. Looking at it from both sides may help others

  12. Thank you for your generosity as you share your life with us and you give us each much to think about. This powerful story has touched me on some profound levels as I consider both my own privilege and how privilege can becomes a dome of isolation for others. May the power of your life, your faith and your writing spread far and wide.

  13. I am praying God will give you wisdom and find you faithful. I am so glad Marie has you in her life and I know that didn’t happened randomly. May God be your strength and may you find joy in your love for this troubled young lady. I pray that she will know that same joy.

  14. The best parents are the ones who realize that there is no one-size-fits-all answer to anything when it comes to your kids. I think you’re doing a great job to realize that what worked for your brother won’t work for Marie.

    Your blog is always such an inspiration!

  15. As an individual with exceptionalities myself, there was a great quote I heard once by someone on a TV show being shunned… He said, “When you are the odd one out it is not so much a fear of being looked at as different – it’s about not being looked at at all.”

  16. I wish I could give you both a hug. What a lovely family and loving heart. My Joey cannot hear but she talks (actually she never stops talking). However, she is very lonely in a group because she cannot follow the discussion and read the faces and body language of her playmates. You helped me understand “her side of the story” with the “dome of silence”. Thank you for sharing.

  17. Yes, there is always more than one way of looking at things, isn’t there. Good on you for thinking it through and following what you think is right, for now.

  18. Having a sibling with schizophrenia, I very much appreciate your honesty and your discussion about the “dome of silence.” You are assessing your daughter’s needs with great intuition. Furthermore, you are helping to reduce the stigma of mental challenges. I have always been confused by hospital visits. It is hard to know what to do and what to bring. I love your idea of a milkshake and communicating with your daughter.

  19. Nice Post – I enjoyed this. I liked both sides of your argument and enjoyed your conclusion. I guess if you are providing a wonderful safe, happy and inclusive environment wherever you are, be it at home or in hospital – it won’t ever matter because wherever your children find themselves they will be confident in their Being and whatever the challenge faced – will hopefully get themselves through the notion that the uncomfortable feeling… is only for a little while. How wonderful it would be to read your child’s view of the experience to correlate with your own.

  20. Reblogged this on Moderation Psychology and commented:
    Nice Post – I enjoyed this. I liked both sides of your argument and enjoyed your conclusion. I guess if you are providing a wonderful safe, happy and inclusive environment wherever you are, be it at home or in hospital – it won’t ever matter because wherever your children find themselves they will be confident in their Being and whatever the challenge faced – will hopefully get themselves through the notion that the uncomfortable feeling… is only for a little while. How wonderful it would be to read your child’s view of the experience to correlate with your own.

  21. […] As someone that spent long days, weeks, and months hospitalized, I’m not sure if I welcomed visitors or not. It was comforting and pleasurable, but it also increased the pain when they left or when they didn’t come to visit. I never knew which day someone would visit and that made it more difficult. It was the “not knowing”. If I wanted a visitor, they wouldn’t come. If I didn’t want them, they would visit. One week I got cards from all my fellow students in the sixth grade. When I was feeling lonely, I’d get them all out and re-read them. It helped. The hardest part was after school was out and summer was in full bloom. There was a basketball court a couple stories down and under my window. I listened to them play as I lay in my bed. I couldn’t see them but I could hear them and my mind went there to watch. It was bittersweet. In fact, that sums up my experience. I was getting treated for the several defective things with my body but I couldn’t be where I wanted to be, when I wanted to be there. (Dome of Silence) […]

  22. soulspeak2013 said:

    Hard decisions for a beautifully strong woman..blessings abundant ♥

  23. Deer Human….you are right not to isolate your baby human while she’s in the hospital. I’m a kat, but I understand feeling isolated and alone and lonely. Your baby human needs your comfort right now more than anything else and its good that you’re going to visit her. Maybe you should bring her a teddy bear! My human’s teddy bear comforts me!

    Shrimp

  24. My heart breaks for you and Marie. You’re both so strong and inspiring. Here’s hoping today she had moments of happiness with your wonderful surprise ❤

    • Yes, we had a great day! She even got to reminiscing about when she first came to live with us and how much she’s grown. (It’s amazing what a few hours of talking with your teenager can do!)

  25. I hope that your dear one is healing. I know that she will appreciate your company and love.
    x

  26. Glynis Jolly said:

    I’m curious – Does the doctor talk to her about the feelings of isolation? The reason I ask is that there may be something she can do to help herself in dealing with it. I’m not talking about her accepting an interpreter either. I would think the socializing without one will help her as an adult. Still, somewhere within her she may have an idea that will help herself. She may just need help in find it.

    • I have talked with her about asking other kids to play cards, or help with a puzzle. She says they will for a short time, but I think they are too uncomfortable with the language barrier. Also, with her psychiatric difficulties, she thinks everyone knows she’s been sexually abused and she has a lot of shame over it, (part of the reason she’s in the hospital.)

  27. Give Marie an extra hug from me.

    regards Maria and crew from australia

  28. I hope Marie gets well soon! Our thouhhts go out to her, you and your family.

  29. Hope she is doing better! Hugs!

  30. brought tears to my eyes….

  31. Thanks for sharing your family’s ongoing story, as each one that you so artfully share touches me in some way. I hope that your daughter’s hospitalization brings her some peace.

  32. First of all I too remember Maxwell Smart, and the first mobile phone in his shoe! I also know what it’s like to have a mentally disabled son and watch him as he watches others from under that Dome of Silence. Thanks for sharing your stories and may God continue to bless you!

  33. A thought provoking tale of compassion. I loved it. Thanks for writing!

  34. Well played. On a day-to-day basis I’m more saddened by my daughter’s loneliness than by her terminal prognosis. I’m sure your daughter was so comforted by your visit.

    • I am sooooo fortunate that my children are all healthy except for their mental illnesses. I couldn’t imagine how difficult it must be to try to comfort a terminally ill child…

  35. Hey ! You know you can treat yourself with a little trip to Paris thanks to us : http://sousnoscouettes.com/

    And you’re back for dinner : we promise !

  36. nikkisth0ughts said:

    my heart goes out to you and your daughter. your story is honest and does not gloss over the difficult decisions that parents have to make, in regards to mentally ill children. reading this makes me realize how torn my own mother has been, when i have had breakdowns and hospitalization. thank you for sharing i respect and admire you for sharing this.

  37. My heart aches for Marie and for you. What a deeply touching and courageous post!

  38. Hi there first thanks for following faithgift.2nd is there any way i can read that e book without itunes i dont have it. Not on pdf or email it to me i would love to read it fellow mom of a special need child

  39. Also any tips on how to do an e book would love to do one

  40. I can only imagine how hard it is to feel excluded in this way. It must be so lonely. I am hard of hearing, so I experience this to a certain extent, but I can still hear a little of what’s going on. To not hear at all must be isolating. I hope you are (were) able to comfort her without making the hospital seem like a reward. Best of luck in all you do.

    P.S. Thank you for visiting my blog. 🙂

  41. Loved the Cone of Silence!

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