adhd · asd · aspergers · aspie · fear · PRTF · residential placement · siblings · support system

Butterflies and My Kids (An Update on D, too)

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Butterflies flutter freely through the air. They fly in the beautiful, warm sunlight and have few cares. This is the life that a child should live. Children should be able to flutter through life with few cares, they should be able to run, laugh, and play without worrying about what others think, without worrying about their safety. They should be able to just be free little children. 
Unfortunately, my children are not able to do this. They are not able to flutter freely with laughter and fun. My babies are not able to enjoy the freedoms of little children, but instead have worries and cares to deal with.
My first baby, my 9 year old son, my Gmail is tortured daily by his own mind and body. It’s so heartbreaking that he cannot flutter freely like a butterfly because he is constantly overstimulated by the butterflies and the surroundings. He is constantly overflowing with anxiety and worry that he is losing control of himself and his surroundings. He is unable to enjoy anything because he is never able to let his guard down and see what happiness can come with being a little boy. 
My girls are unable to see what happiness comes with being little girls because they are in a windstorm. The wind of their brother gets under their wings and carries them in raging storms. They are not able to flutter freely, but instead they are constantly worried that they will do something wrong, do something to upset Gmail, and therefore be carried through the air in that raging storm. They are unable to laugh uncontrollably and enjoy being free butterflies fluttering from flower to beautiful flower.
I hope that by tending my garden, I am in some way helping Gmail to change. I hope that I am able to help him come out of this life that he has right now as a beautiful butterfly that is able to see what real freedom is. I pray that I am helping him to be the little boy that I know is inside that body. He is such an amazing little boy. Deep inside, I can occasionally see glimmers of happiness. I see a little boy who is smart, funny, creative, happy, loving, and all around a neat kid. I want him to find that inside himself. I want him to learn to love himself and understand himself in a way that will give him the freedoms that he deserves. 
Gmail is still in the hospital. He is scheduled to come home today, but unfortunately, we know that he is still not stable. Insurance, however, doesn’t care. They don’t care that he has younger siblings that were terrified this weekend because he lost control at the hospital. We took him on his pass and he lost control because of the anxiety. There were so many people, so many sounds, so very much sensory input. His little body could not process it and it caused his anxiety to boil out of control. He started stomping and screaming in the concourse between the hospitals. He started trying to control the girls because he couldn’t stand the thought of them pushing the wrong buttons on the elevator. We went back to the unit and he just couldn’t contain himself anymore. He lost all control and had a rage in the time out room on the unit. My heart was broken when we left because I left my baby boy screaming, kicking, hitting, cursing, and totally out of control in that room. There was nothing I could do, except to leave and let him exhaust himself. I called back later, he raged for about 35 minutes total in the room, alone. 
Sunday we went back. We went in the game room to play a game and he automatically started losing control of himself. He got very angry and agitated because Spike wanted to play Connect 4 with him. Spike started trembling and crying and I had to take both her and Pouty out of the room to give them some breathing room and allow all three of the kids to regroup. Chad played a few games with him and then we came back. When we came back, he played with Spike, Pouty, and then with me. If one of the three of us had beaten him at the game, he would have lost it. We could just see it. It was just not going well, so we decided to try our pass. We took him downstairs to the butterfly garden and then to the cafeteria for a snack. At first, things went pretty well, but we could see the anxiety building so we went back to the unit about 30 minutes earlier than we were supposed to. By doing that, he was able to transition back to the routine there without any further problems. Leaving last night was, in a lot of ways, more difficult than leaving Saturday. It is so hard to know that my baby cannot even make it in the hospital for 30 minutes with his siblings. That his anxiety and ability to process his surroundings is so difficult that he cannot function in public places, much less to function at home. He holds himself together until he gets somewhere that is more comfortable and then falls apart. 
So, this morning, I talked to the social worker at the hospital and it appears that despite what happened over the weekend, insurance is sending him home. Everyone on his team; doctors, nurses, social worker, parents, therapists, are all in agreement that he needs to stay there until he transitions to his long term treatment facility. Insurance doesn’t care, to them he is a number, he is not a name. He is not a little boy that they know. His sisters are just “siblings”, they are not little girls who are terrified of their older brother. They are not little girls who are being shifted from one relative to another. They are little girls who cannot sleep in their own beds tonight. They are just “siblings of patient #xyz”. To me, to those of us working with Gmail, they are little girls. They have names, they have needs, they have emotions, they are real children. Gmail is a real child, he has a real name, he has a real need, and he has a real problem. At this point, he is not “stable”, he will not be “stable” in his home and community until he has been through much more intensive therapy. The therapy we are trying to get him at his long term care facility. Until that comes to fruition, he will come home. He will not be safe from himself. Thankfully, we have supportive family members who are willing to help us, that provides the girls with safety. It is not Mommy & Daddy, it is not their own beds, but it is safety. Safety is something. 
I am terrified of what is to come. I only know that I will put him in the car and take him back to the hospital at the first sign of anxiety, discontent, and rage. I will keep him safe at whatever price that is. I will keep the others safe at whatever price. I suppose that means that I should be packed and ready to go. 

8 thoughts on “Butterflies and My Kids (An Update on D, too)

  1. That's some heavy stuff, my friend. Hoping that his transition home surprises you with its ease. You're a strong woman and lots of us are holding you all up with thoughts and prayers!

  2. You are all in my thoughts and prayers.

    Lena – you are an amazing woman whose faith and strength are a guiding force. May our Lord God be with you and your family today and in the days ahead.

  3. Wow Lena. I had no idea it had gotten this bad. I feel guilty thinking of hard I thought I had it. I am so sorry and I miss our chats so much!! Sending all the prayers in the world your way!! ((LENA))

  4. Just want to give you a big hug! I'm with Jen, hoping it is surprisingly smooth transition home. Hang in there!

  5. There aren't words enough, really….heck, I'm having trouble finding the ones to start. I've got prayers for you, though. Oh yes, lots of prayers.

    I have a saying — that the light at the end of the tunnel shines even in the darkness around the bend. You're in a dark place, dearheart, but you're all traveling forward together.

  6. You are blessed in many ways. From reading your post I can tell you have a realistic understanding of what it will take to get your son the help he needs to make your home peaceful and secure for everyone concerned again. I'm sure that does not help the feelings in your gut while your family remains piecemeal because of the small minded, cost cutting insurance bs that you are dealing with now.

    I get the sense that you will remain in charge of all this transitioning that is happening now and that things will settle down in due time for all of you. I will pray that you will all be peacefully and lovingly united and that therapy will do what it does and heal your son. Hugs to you, my dear.

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