In Response...

...to your comments.

I have decided to paste your comments in the body of this post, because they have stirred in me a lengthy response that is more suited for this format rather than the comment section.

I'll start with Tom:

patterns of ink said...
SQ,I just happened upon this and can't comment at length right now, but I am so thankful for the update. It sounds like you have been busy investing in very important things and showing the kind of love only a grandmother can pour out.I had mentioned that www.hope139.com site some time back. This may or may not be beyond the sort of help they can provide. We'll continue to pray for you and your husband as you meet this need. I loved your alertness to the dorky pajamas--good call!If you ever have time to read—understandable if you don’t—my project is wrapping up but has probably suffered from a lack of your kind, editorial prodding.Don’t mention this at POI because my mom reads there, but her cancer is worsening and she has resumed radiation and chemo (though she had previously decided not to). She thanked me over Thanksgiving for making her feel like her life made a difference (by writing about it). I share this only to say that what you are doing for your grandson is making a huge difference! It's a wonderful story of love.
December 06, 2007 10:02 AM

I was so very sorry to learn that your mother's cancer has returned, Tom. She has been on my mind ever since I read your comment. I will surely keep her in my prayers. I have had so many family members and friends come down with cancer. Most of them died from it, but not all. After my father went through surgery and then further treatment for his colon cancer, it returned and attacked his liver. He didn't survive in the end. I wish I could say otherwise. It would be wonderful to still have him around to shoot the breeze with over the phone each day which was our practice. But I must say that in many respects I feel closer to him and also to my deceased mother since their deaths.

I did check into the Hope139 website, but feel that it is not what is needed for our Nik at this time. Thank you for bringing it to my attention though, and if you have any other ideas please share them with me.

Once Christmas is over I plan to visit your blog and catch up on your continuing story about your parents. As I recall the last entry I read was about her being pregnant. I love your story about your parents. Tell your mom for me that indeed her life has made a difference and in mostly hidden, far reaching ways. This seems to be the case for most of us. We don't always know the good we do. I would say that rarely do we recognize when we truly have been an instrument of Providence. I like the way that works, because then we are not tempted to become full of ourselves.

About Nik, my husband and I have even thought about trying to home school him ourselves. Our daughter can't because she has to work in order to put food on the table and keep a roof over their heads. I just don't know if home schooling would be the right thing for Nik though or if we would have the energy for that task. He doesn't like school work. That has been his major problem in the school setting. But the school he is attending now passes a wand over each child before they enter the school in order to detect any weapons on them I assume such as knives and guns. So, I ask myself if that is a good environment for Nik to even be in. Maybe homeschooling would be a better choice. I don't know if my husband and I could handle it though. We will have to wait and see how things work out for Nik in this new school environment. The people who work with him seem to be very nice according to my daughter.

J_G said...
Gosh Susie I'm so stuck for words beacuse I know some of what Nik and you have been through. As I have told you before my brother has a similar type of learning disabilty and there was no one that could help him like you and your husband have helped Nik. I still keep Nikolas in my prayers a couple of times a week and will continue to do so. You and your husband are very special people.
December 10, 2007 11:40 PM

Jenni, I remember your talking to me about your brother and the problems he has had over the years due to his learning problems. I hope the educational system is well enough equipped in the end to help our Nik and deal with his "yet unidentified "learning disability. I don't have much faith in the system at this point. Although there have been well intentioned people all along who have worked with him over the years, I think it has been a case of too little too late. I have always thought that what he has needed is less medication and more therapy. Therapy is hard work and time consuming though for both parties. Thanks for your prayers and continued interest.

wreckless said...
I have visited and thought of you often, imagining but yet knowing you were doing exactly as you described. Grandparents do have a magical calm. My nephews still gravitate to my parents still after they were the only ones confided in in a nasty divorce years ago.Quiet, refuge, stability, structure, and consistent focused atttention are all found in your place.He is blessed to have you.I will continue to pray and think about you.
December 11, 2007 7:37 AM

Wreckless, it is true that Nik does best in a structured, calm environment. He is eleven now, but when he was about seven a social worker was visiting our daughter's home each week trying to help her gain some control over Nik. At that time he was pretty unruly. In that regard, he is much better today. The social worker stressed, among other things, the importance of structure in his day. She also stressed the importance of consequences when he misbehaved which is essentially the same thing as punishments except it sounds nicer. My daughter was teaching at the time. With papers to grade in the evenings and four young children to take care of, she could only dream about being able to provide the kind of structure to Nik's day that the social worker seemed to think he needed at home. It was also very hard for her to enforce consequences when Nik misbehaved, because of the time it took to do it. This has been part of the problem. There has not been enough time at times or enough human resources (enough helping hands) in the household. Thanks for your prayers.

Susie Q said...
Dear Susie Q...you are a blessing to this young man. I am no expert at all but the consistency and quiet and structure you give is just so important.How lucky he is to have you two.I will keep you all in my prayers and thoughts...Hugs,Sue
December 12, 2007 9:19 PM

Thanks for your prayers, Sue. I am no expert either. I have had to rely heavily on instinct or my gut much of the time in dealing with Nik. Of course, I touch him a lot. Give him lots of hugs and pats on the head and arm and hand. I tell him I love him. In turn he is very affectionate with me. We had all the children with us this weekend because our daughter was going to be out of town for the weekend. She dropped them off at our house Friday evening. When the doorbell rang and I opened the door, Nik was standing there with a big grin on his face. He said to me, "Finally, I get to hug you!" So, I have been affectionate with him, but also I try to explain things to him in order to help him understand the true consequences of his actions or lack thereof. He listens to me and usually he ends up seeing things in a different light one that is enlightening.

Paul said...
He's really lucky to have that support from you and your husband. I've seen that happen quite often as a school counselor - grandparents playing key roles in this sort of situation.
December 16, 2007 11:04 PM

Paul, when I was bringing Nik to the behavioral hospital so that he could participate in the day program there, I noticed that many of the other children had grandparents who had brought them there too. Grandparents are so important in a child's life. But I never dreamed that I would be playing this vital a role in the life of any of my grandchildren. I am ever so grateful that my husband and I are able to be there for Nik and our daughter. I do not know what our daughter would have done without our help all these years. We have been able to help her in many ways and we are glad.

I thank everyone for your prayers and support. I still plan to lay off blogging till well after Christmas except I might sneak over to Tom's blog and read the rest of his story about his parents. Aside from Nik and our daughter's needs, I have so much to do around here. I can't believe I have allowed things to get so disorganized in my house. I am a prime candidate for help from Operation Organization (think that's the name of the TV program).

May your Christmas celebration be blessed with joy and may all your wishes for the new year come true.

Nik is in the forefront of the photo. He is wearing a yellow shirt. Rachel is seated in the rocker. Erik is to the left in back and Jakob is to the right in back. They are all very sweet children.

Update on grandson and family

(Edited)

I want to thank you all for continuing to be concerned about my grandson and our family. I thought you deserved an update. Plus writing about it will be therapeutic for me.

In my previous post of October 27, I said that my grandson Nik was no longer able to attend his regular school due to his deteriorating behavior. He was in Special Ed there. They were not able to give him the type of therapy he needed. His school district remains responsible for his education though so an alternative school was found. He started attending this alternative school on a Monday. Two days later he was suspended and could no longer attend there. He had gotten upset and tried to run out of the school. When he discovered that the door was locked then he tried to kick it in. With that he was told he could no longer attend there.

After my daughter picked up Nik from the school that Wednesday, she talked to the school psychologist at his regular school. The psychologist thought Nik needed to go to the crisis center and be assessed. The therapist at the crisis center talked to Nik and decided that he would benefit from the day program at a behavioral hospital in our area. So the following week he began participating in the day program at this hospital.

Transportation to alternative schools is provided by his school district except not in this case because it is a hospital. My daughter had to provide the transportation for him. My husband and I offered to drive him to and from the hospital for the duration so that our daughter would not have to take off precious time from work for that purpose. The hospital was less than 30 minutes away from us. It was more convenient to have Nik stay with us during the week for the three weeks he was involved in the day program at the hospital. So he did. I drove him to the hospital in the morning and my husband picked him up in the afternoon when the session ended. Nik went back home to be with his family on the weekends. The first morning I took him to the hospital to participate in the program I hated to leave him, because I knew he was frightened. He had such a worried look on his face.

At the hospital he was part of a group of about a dozen other children with similar problems and in his age range. He received group therapy and individual therapy there. About two hours of the day was devoted to school work.

Every day the hospital sent home a sheet of paper which showed how Nik had done in the program that day. He was awarded points based on his behavior in a variety of categories such as respect, group participation, working on goals, staying on task and so on. Actually he did quite well and often received the maximum number of points for the day. In turn, I completed the other side of this sheet of paper giving him points for his behavior at home in a variety of categories already established by the hospital. Each morning I returned this sheet of paper to the hospital so that they could see how he was doing in the home environment. Except for one day when I had to dock him a few points due to a minor infraction, he received the maximum number of points for his behavior in our home. He did very well here. In fact, we could not ask for a better behaved child.

It was such a joy having Nik in our home for those three weeks. We adore him. He is a beautiful child. A sweet boy. He is kind, sensitive, artistic, bright and funny. But he is a boy with lots of anxieties that at times can cause him to get frustrated and then angry and then he acts out. But not once while he stayed with us did he lose his temper or even come close. This was due in part to the fact that our household is very quiet except for our dog's occasional barking. There is little commotion. Things are calm around here. In fact it is so quiet here that I wondered if it might be boring for Nik hanging out with a couple of old people in such a quiet house. So I asked him about it one night at supper. He said that he liked the quiet in our house and wasn't bored at all. In the end he was proud of his behavior with us. It gave him confidence that he could control himself.

I was hoping this good behavior here would carry over when he returned to his own home. But it didn't at least not at first. He is coming along though and getting better about controlling himself. I got a phone call from him the first night he returned home which was a Friday after being here for a week. He was crying. He asked to come back to our house. I could barely understand what he was saying, because he was crying so hard. Later when I talked to his mother I learned that something minor had taken place between him and his sister that upset him, and he lost it. Then he felt bad about himself. Whenever he loses control he gets mad at himself and that just seems to make it worse. I told him that night that he would be coming back to our house on Sunday. It seemed to satisfy him. As I see it, he wanted to come back to our house because he would not have to deal with conflict here and could feel good about himself and his behavior.

Nik liked being here in our home with us. Well, we have a comfortable home and a nice collie that makes a kid feel loved and protected. Nik doesn't watch much TV, but he thoroughly enjoys playing a particular computer game. So we let him download the game on our laptop which is in the family room. That was his source of entertainment here, that and drawing. And then I make the best oatmeal in the world which just happens to be Nik's favorite cereal. Every morning I had a big bowl of it waiting for him on the kitchen table.

Of course as any good grandma will do I doted on Nik to excess and to his delight. He complained the first night here that the pajamas I asked his mom to send along with him made him look like a dork. Nik was right. They did indeed. He is a tall lanky boy and those pajamas only accentuated his lankiness. So the very next day I went out and bought him new pajamas that would not cling to him and I bought him some of those cool lounge pants the boys are wearing these days, those and brand new white undershirts to go along with. Well, he was thrilled with his new clothes.

When I noticed that Nik didn't have a good sense of time and had difficulty remembering what day of the week it was , I decided to buy him a wristwatch with a digital read and one that also tells him the date and day of the week. It was a good investment and I think it will help Nik to develop a sense of time.

We have four bedrooms in our home. Since I am a light sleeper and my husband snores a lot, I sleep in one bedroom and my husband sleeps in another. A third bedroom is devoted to antique furniture. A fourth bedroom which is rather large has our exercise equipment in it. This is the bedroom I used for Nik. In one corner of it, I placed a pop-up trundle bed. Next to the bed I placed an end table and next to the table a rocker. That cozy corner became his bedroom. He was proud of his "bedroom" and had to show it off to his cousins who popped in to visit. I have kept everything in place in the event that he needs to return here for an extended period of time.

At night at bed time, Nik and I read from the Spiderwick books for about 30 minutes. He sat in bed and I sat in the rocker nearby while Max our collie laid sprawled out on the floor pretending to be listening as we read. Nik would read three pages to my one page. While he was with us he managed to finish book one of the Spiderwick series. This was quite an accomplishment for Nik as it was the first time he had ever read a chapter book all the way through. This made him very happy.

Something else we did as part of the bed time ritual was to kneel by the side of the bed and say an evening prayer after we were done reading. He had never before knelt by his bed to say prayers. So, this was new to him and he was eager to participate. In the beginning he had nothing to say and left all the talking to God to me. But as time went by he began to pray a little to God himself. Finally one night he prayed and thanked God for his life. I just thought that was wonderful. He is being raised Catholic, but lately he has been refusing to attend his religious education class on Wednesday evenings and refusing to attend Mass on the weekends. So I thought it was important that we say evening prayers together while he was with us.

I said he is bright, yet his reading level is well below what it should be for his age. He is eleven. It took him a long to to learn to read and he still struggles with it. We are pretty certain that he has a learning disability, but no one seems to know what it is. I believe he is going to catch up in his reading however. Even though he struggled with some of the words in the Spiderwick book we were reading, he was patient with himself. I think he felt safe with me and this is why he could be patient with himself.

Nik started attending another alternative school last week one that uses physical restraint when called for. He has a bad habit of trying to run, usually out of the school building, in order to escape his anxieties when they come on. It is that old fight or flee thing that happens when a person gets anxious and the adrenalin starts flowing. He seems to be doing well at his new school. His mother (my daughter) is pleased with this school so far and the way they communicate with her daily about his behavior. They are able to give him the amount of therapy he needs right now in his life. The goal is to get him to the point that he can return to the regular school setting. Usually that takes one to two years.

I feel better about Nik's short time future now that he is settled in a school that seems to be able to give him what he needs for the time being. I am encouraged. But he has many challenges. There are some other things I want to do for him that hopefully will help. Once the holidays are over, I plan to get involved again in my daughter's household, if she will have me, helping her out with the children and all.
I will be keeping my blogging activities at a bare minimum consequently.

I welcome any suggestions, ideas, thoughts, direction any of you might have to offer here that I might use to help our Nik along.