Tuesday, July 19, 2016

Keeping Andy entertained

Andy's been bored with summer vacation days when we are just sitting around at home. When we go to the campground this usually helps, but he had had meltdowns on the beach too. If he's had enough swimming or kids around him are yelling and squealing too much, he will break down. Today, everyone was worn out. He doesn't have structured activities going on and starts crying hysterically. I took him for a ride in the car in the evening, which he enjoyed, but I can only drive around for so long. He will love to be in school again. 

We will probably go on a couple more long weekends which should switch up his boredom for a bit. It's just hard because we run out of things to do with him,  and then everyone suffers the consequences.

His hair is the color of the sand! Here's some of his fun moments at the lake.  




Wednesday, July 6, 2016

Andy enjoys half days at school through July

Andy is enjoying being able to go to school and see his friends through the next week. He loves the routine. After it's over, we will have to visit the beach more often and go out of town more to keep him busy. When he gets bored in the summer the crankiness gets bad. We've been going to the lake on the weekends, which he loves.

Wednesday, June 22, 2016

Perfect water raft for Andy

When I take Andy to the lake or beach, it is hard to keep him from reaching down and grabbing the sand and putting it in his mouth. He doesn't understand "no", and loves to put everything to his mouth except food. He only has to get a small amount of sand in his mouth before he will get an upset stomach from it. I like to sit Andy at the shore in a few inches of water and let him play with a water-filled bucket of toys. There is still a problem of him reaching down for the sand under the water and he wants to put it right in his mouth. So in the past, I have found that if I sit Andy in an inflatable raft with a floor on it and put water inside, he can sit in there and play in the water without access to the sand/rocks/shells. 

We have since found a better solution, which is a River raft. My inlaws picked them up for floating down the river, but they are perfect for Andy.  It is an inner tube with a mesh bottom on it. This way he can float in a few inches of water, and it doesn't have to be filled up. He doesn't have access to the sand and the rope around the tube can be tied to my chair  to keep him from floating away. They also have cup holders, which we used for his water.  It is a better alternative to him sitting in a chair in the water, because it keeps all his toys contained. He hasn't learned to throw them out of the raft yet. The one we bought is the Intex River Run inner tube. This raft can be found on Amazon, Walmart or Walgreens. We love it and so does Andy! 







Sunday, June 5, 2016

Andy's camping

Andy loves being outside by the lake. We have a travel trailer/camper that we use in the summer. It's just the right size to accommodate Andy's wheelchair which we use to feed him in. We eat outside also and fold up and carry the chair outside. 


Yesterday, I laid out four outdoor blankets on the ground with Andy's toy piano on it. He played while my daughter was with her cousins in the paddle boat having fun. He will also play on the blankets while we are trying to grill food outside and stays happy and entertained. He also enjoys being driven around on the golf cart. My sister piles it up high with all the rafts for the kids. It's pretty funny! 

Wednesday, May 18, 2016

Andy's 7th Birthday

It's Andy's 7th Birthday today! He brought goodie bags to school and had a great time. He came home and had a nice evening with us. It was a great day!














Monday, May 2, 2016

Andy's been happier lately


Here is Andy, in the driveway, putting his feet up on the back of the passenger seat. It makes him look like he's really enjoying the ride. He's been feeling better lately with less constipation. He's been happier. Things have been great with my daughter also. She's been less angry and we've been fighting less. Andy's 7th birthday is coming up in two weeks.

Friday, April 15, 2016

Ways to fit standing time in

I let Andy stand at the sink in front of me while I do the dishes and load the dishwasher. He enjoys playing in the water. I also have him stand at the sink for toothbrush time and hand washing after school. 

Tuesday, April 5, 2016

Standing time

Getting some standing time in today while there's no school for the week. 

Friday, April 1, 2016

Things are better

Had an emotional couple of days with my daughter. Andy has been great, but tension has been mounting between me and my daughter. She had a very stressful week of testing at school and took it all out on me. 

I decided I'm going to not try and be her friend, but just be a good and loving mom. I do still feel I have the right to tell her when she is hurting my feelings and want to remain open with her. It's better when things are good between us, because then she's nicer to Andy, and interacts with him more. 

I've also been trying to be mindful of how I pay attention to Andy and try not to be overly affectionate with him in front of her, because she gets jealous. Even when I was just saying I needed to give him medicine because he was sick, she got really bent out of shape. She thought I was treating him like my "precious sick baby" and it was making her angry. I don't want to walk on eggshells all the time, but she expects equal attention and is watching and waiting. I told her several times today how I was proud of her for several different things and she seemed to enjoy that. 

My husband had a long talk with her the night I broke down, and it seems that it helped. She's trying to behave more so than usual. I think that I needed to ask him to step in, which I did, because nothing I was saying to her was getting through. 

Wednesday, March 30, 2016

Project "Repair Relationship with Daughter" is on hold

I am so done. I have been pushed too far. I am sad and depressed and don't know how to make my daughter happy. I can't. I really can't. She is so bitter and angry that Andy is here. That he exists. It kills me every day. Hearing about her absolute disgust that he is here, in our house.

I have her seeing a counselor. It seemed to be helping a little, but she won't talk about deep issues with her. She tells me, "Mom, I don't want her to see me cry". But it is way past time for her to see both of us crying and letting it all out. It has to happen. I have to let her see how much I am hurting.

The last six months have been horrible. She blows up at me for any little thing. We fight all the time. Our relationship feels truly toxic. She is nine years old. Andy came along when she was two. We were inseparable and I loved her so much, and she loved me. I stayed at home with her and dedicated my every minute to her. When Andy came along she was pushed aside, and even furthermore, when we learned of how severely disabled Andy would be at 9 months old.

She feels that ever since he came along, our bond has been broken, and I know it has. No matter how much I tell her that I love her and care about her, she doesn't believe it. She thinks that I do not love her, and Andy is all that matters. Anything that goes wrong is Andy's fault. No matter what it is. I told her she can't keep blaming him for everything.

I try so hard to make her happy, and it is all for nothing. Anything she wants, I do it. She wants a new room decor, I do it. She wants cats, we get them for her. She wants more clothing with cats on it, I run out and buy it while she's at school. I take her to all kinds of activities with her Girl Scout troop. I am the co-leader, so I plan activities, make calls, emails, carpool her and her friends to the events, I am at all the meetings with her- it isn't good enough. Nothing is ever good enough.

She is done with me. She told me she doesn't want to get close to me again, because she is just going to get hurt when I pull away for Andy's needs, and she doesn't want that. She doesn't know if we can ever be as close again as we were when she was little. She says "Dad is the only one that is truly there for me".

We've been through the trenches when she yelled, screamed and cried about how she wished Andy was never born, and he was ruining her life. I felt so guilty and depressed about it for days. Luckily my husband had a weekend away planned and I got to regroup. I was feeling so broken down from her.

When we got back I told her that I never wanted to hear those words out of her mouth again. It was unacceptable for her to talk like that. He's my son. I had him and he's here. We have to make the best of it now.

I lost it today, because I thought we were making good progress. Yet she still resorts to telling me AT LEAST once a day how I am a horrible person. I am a bad mother. I am ruining her life. She is like a teenager already I know. Is this a little young to be happening at nine years old?

I have been taking classes to try to give myself a distraction. Andy can't be changed. He is what he is and I have to just love him and accept him for who he is. If I have any hopes for him they are just crushed, so I don't hope for him anymore. I just love him for who he is now.

If I get wrapped up in what Andy can't do and what can I do to make him better, It just eats me up inside. I have abandoned that. I am trying so hard to restore things with my daughter but right now at this moment I just have to abandon my efforts. I am not going about things in the right way. We both snap at each other so much, we can't feel the love we have for each other.

I'm trying to shift myself into a new line of thought, but it's hard. Our relationship is so toxic and impossible right now I am just a crying mess. She tried to come and apologize to me and I broke down crying again while telling her "You've got to stop telling me what a horrible person I am". I've just been pushed too far.

Now I have to go help her feel better so that she can go to bed, but I can't help feeling like I am just done. At least for today, I'm done.