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Thread: Nick in Residential Placement - an update

  1. #1
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    Default Nick in Residential Placement - an update

    Hi Guys, Here is my latest blog post about how we are doing. It's not easy, but we'll get there. xoxo

    Breaking Up is Hard to Do
    Well, not really breaking up, but breaking apart. At least that is what our family feels like, now that Nicholas is living away from home for the first time. Like all transitions, this one has its stages. First it was happy excitement. That was followed by stoicism. Now, we have tears and "OK, this has been an interesting social experiment. I want to come home now. Mum, please, I want to come home."

    Jim and I visit Nick nearly every day. Our extended family and close friends all visit for hockey games, playstation or just to hang out. Nicholas is not lacking for company.

    I was thinking that it is more like this: imagine that you have been in a bad car accident in China. There are people taking care of you, making decisions about painful procedures that you do not understand. No one speaks English. I think it's like this for Nick - of course he understands what is being said, but everything is new. Everything that is familiar is gone - poof.

    Everyone will have played charades with the family at some point in their lives. Inevitably, there are those who intuitively make connective leaps of imagination to guess impossibly complicated answers based on a few vague gestures. Those are the winners. Then there is the cousin or brother who stares at the words on the slip of paper, groans, laughs, begins to awkwardly count syllables, then gives up. Nicholas is used to being surrounded by people in the former category. We know all his little gestures, tongue clicks, eye rolls or hand movements - we can put together complicated messages using his secret code in no time at all. We are his translators.

    I know that we will be OK, but right now we all feel a strong push and pull. I know that visiting Nick every day gives him comfort, but is my hovering making his settling in more painful and less efficient? Today, I have not visited Nicholas - I have had two routine doctor appointments, I've done the grocery shopping and I've cleaned the house. All day long, I have worried. Is my baby safe? Is he happy? Are his eyes glazed from the exhaustion of trying to communicate with people who do not understand his language?

    Yesterday, I gave a pep talk to Nick. I said "you are a great optimist. You have never been faced with a challenge that you didn't meet. We can do this, because we choose to. Every day, we must choose to be happy and we must not choose to be miserable. Each day, it's a choice. Growing up hurts sometimes - that's why they call them growing pains".

    Now, I must work at applying these lessons too. Two years ago, I had to face this transition with Natalie when at 17, she crossed the ocean to attend university. Now, I have to trust that my boy who is so dependent, will be alright without me. There is no doubt about it, breaking up is hard to do.
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  2. #2
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    ((((((Donna & Nick))))))

    Such a huge adjustment to this major change for all of you. The newness has worn off, and the reality has set in. It must be so difficult for each of you in a multitude of ways.

    Donna, do you feel that your visits are equivalent to hovering? Does Nick feel like you are hovering? Have you and Nick discussed your visits ~ their frequency and duration?

    Maybe you aren't hovering. Maybe you are Mothering. And there isn't anything wrong with that.

    Unlike Natalie, Nicholas' needs preclude him from experiencing complete independence. Perhaps he needs you there to interpret for him, or to ensure that all of his needs are being met properly. Or he needs you there just because you are his mom.

    What Nick is missing the most might be the security he felt living at home. Whether you were in his room or elsewhere in the home, you were there. Just knowing that Mom is nearby gives a feeling of comfort and a sense of safety.

    Nick might also be frustrated with the challenges of communicating with his new caregivers. Eventually, if they work with him frequently, they will begin to learn Nick's language and signals. Until then, he may need your presence to assist him in communicating or explaining his language to his caregivers.

    It's only been a couple of months since this change in residence, so it is still new to all of you. It will take time to transition, to adapt, and adjust to this change. And I think that part of the success of this transition revolves around Nick feeling safe, secure, and comfortable in his new environment with his new caregivers. You are part of helping him to feel that way, so that is why your presence is necessary during the transition.

    I will confess to being unable to relate entirely to your situation, as I haven't been through it. But, if I were in your situation, I'm fairly sure that Jim and I would keep our regular schedule of day and night with Jon, as we do with his hospitalizations. I can't imagine not seeing him or being with him.

    I understand the difference, of course, as this isn't an emergent hospitalization for Nicholas, rather a new living arrangement.

    The agony you feel when you wonder if Nick is safe, happy, healthy, and withstanding the stress of his new environment is palpable, Donna. I get that in the deepest part of my soul. Just because Nick isn't living at home with you anymore, that doesn't mean that your relationship with him has changed one iota. You are still profoundly connected, and nothing can alter that ever.

    Our sons are grown men, Donna, but they still and always will need us. And no one can replace us. However loving and caring one may be, they cannot replace us.

    If I were in a bad accident in China, nothing would comfort me more or help me to heal faster than the constant presence of my dearest family member, especially if that family member spoke Chinese.

    Maybe both of you need more time to adjust to this drastically different living arrangement. I don't think that means less visits or staying away. Indeed, it may mean that you need to continue your daily visits for some time. Maybe for all time.

    You are hurting. Your boy is hurting. You need to be together. That's how you've survived everything else on this journey.

    Please don't repress your natural instincts as Nick's mom. If you are worrying about him or longing to see him, then go to see him. How about using Skype to connect with Nick? Is there a caregiver, who could help Nick set that up? Just hearing your voice or seeing you might be what Nick needs to feel more comfortable in his new digs.

    I hope some of this makes sense! I've been interrupted a dozen times while attempting to write it. Please know that my prayers are with you both, as this is a complicated and stressful circumstance for you ~ for all of you. I can't presume to know what you are going through. I can only understand the feeling of missing my boy and wishing that he was home and things were as they once were. Then I try to apply that experience to yours to gain a better comprehension.

    Sending my love and healing thoughts across the miles to you and Nick ~

    Love & Light,

    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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    Hi Rose, I just sent you a PM. Thank you for your wisdom and kindness! xoDonna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Donna, that must be so tough! Our older son will be off to college in less than 2 years, and I'm already saddened by that. But of course, Nick's situation makes it so hard on both of you. It is always hardest when we are ready for change before our children think they are. After having followed your story for years, and seeing how much the two of you have been through, I think the challenge is not only the typical not wanting to be away from the familiar, I think that you have a very strong bond with him. He just needs some time to learn that the bond stretches, and will stay in tact even when you're a few miles away.

    {{{{hugs}}}}

    - momster
    Momster, mom to 2 boys: one of whom has CP, NLD, ADD, anxiety disorder, osteopenia/porosis and a few other letters following his name; and married 25 years to a wonderful guy

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    Yes, you are right and I will tell him that tomorrow! Thank you for sharing such a thoughtful and sensitive response. V. much appreciated. xDonna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Hi Donna & Nick,

    When I was only 14 yrs. old my parents sent me away to a boarding school 7 hrs. from home because the public school I went to didn't want to deal with my epilepsy. In the beginning it was hard for my parents as well as myself but after being gone
    for 3 yrs. and only coming home on long vacations like Thanksgiving, Christmas and Easter I found that being sent away made me much more independent and I did a lot better in school. When I first left home my parents could have no contact with me
    for 6 weeks unless it was an emergency after that we would talk to each other or write once a week. If I hadn't gone to boarding school I probably would have never have graduated from high school because people back in the 1970's didn't want to deal with
    my epilepsy and how it effected me being on all the seizure meds. I know it will take time for all of you to adjust but take my word you are doing the right thing and this will help Nick become more independent. I wish you and the family only the best and May
    God Bless All of You!

    Sue

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    Thank you, Sue! I will read your post to Nick today and chat about it :)

    Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Hi Donna & Nick,

    Thanks for replying to my private message I sent you. I've been to Canada a few times and I was going to have my first brain surgery done in Montreal but the resident Drs. went on strike at the last minute. Years later I had brain surgery done
    twice and I'm glad I waited because they came a long ways since the 1970's when I was first going to have the surgery done.
    Nick will do well and become more independent as time goes on. It will be hard for all of you but I know after I broke it off with my family for 6 wks. when I went to boarding school I learned to take better care of myself, and I realized I could live
    a normal every day life wihout someone by my side all the time. Today my parents tell me I'm to independent but when I was 14 yrs. old I had to take care of myself, do my own laundry, help cook meals for 125 students once a month, as well as clean
    the house I lived in. All of the students had to do this and it made us realize we can be somebody in life without having to worry about our health problems. I wish you and the family only the best of luck and May God Bless All of You!

    Sue

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