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.

Saturday, March 19, 2016

Adaptive bike giveaway helped a child with CP get a bike

Great news! Andy's friend will be getting an adaptive bike from a private donor. Thank you all for voting and sharing!


Trying to have Andy on his feet more

Andy really doesn't care for the standing equipment, but likes to be upright. At home, and at school, Andy seems to prefer being on his feet. At school, he likes to stand at the tables. He likes being up and about with the other kids. He also gets bored of being down on his belly. I was staying very close to him yesterday, while he stood against the couch. He was watching Dora the Explorer. He sat at times when his legs got tired. He did this for about ten minutes. I also walk him around the house holding under his arms. 




Sunday, February 21, 2016

Not sure what to do with Andy's education

Andy is still like an infant and is almost seven years old. In our opinion, he really hasn't made much progress cognitively, since he was born. He seems to slowly be gaining instinctive skills, such as walking and grabbing objects, as his brain allows him to do these things. It is not due to anyone teaching him. I can hold him up and he will take steps around the house, but he cannot stand on his own. He still cannot get out of a side-lying position into a sitting position on his own. He still cannot talk. He does not communicate with us in any non-verbal way. I don't know if another school would be better for him, or if he just won't learn no matter where he is, because his brain isn't ready to be taught.

We get sad about Andy still, but not as often. We've learned to step around the sadness and find ways to distract ourselves from it. It's all we can do. Being sad doesn't change anything, and neither does crying about it, or being angry about it. We've accepted it and we are trying to move past it. 

Our family dynamic is tough, but I know all family life is difficult no matter what. Life is just difficult in general for everyone.  I know that Andy enjoys swimming and  music, so we try to give him those things to make him happy. I also have to have a life outside of my kids or I can't be happy. So, I've really shifted my focus to try to keep everyone in a happier space.

Thursday, January 28, 2016

Convaid EZ Rider stroller





We recently got the Convaid EZ Rider stroller for my son Andy. We really love it. It folds up to a very manageable size and it weighs half the amount that my previous Kymba Ottobock stroller did. It weighs around 22 pounds. Without the foot rests it is about 18 pounds , but we added the foot rests for my son. We did not add the armrests to keep it light. 

The old stroller that I had only folded in half and was so big and bulky when it was folded. It was like the size of a very large box and was so awkward for lifting that it was ridiculous. It was very difficult fit into the trunk of my van minivan, and I always had to have the rear seats fold flat down just to get it into my vehicle. Other people with regular cars could not even get it into their trunk without taking it apart. 

The new stroller by Convaid folds up very easily and is so easy to pick up even with one hand and put it in my trunk. I do not have to fold the seats down in my minivan, I can just place it in the trunk area in there still plenty of room for other things.Andy sits in it so nicely, and is quite comfy. I can tell he is relaxed and enjoys the ride.

Previously, when Andy was three years old and about to go to preschool, I was trying to find an ideal stroller for him. I needed one that he could use to ride the bus, and I needed one that he could use at school. At first, I was told by the preschool that he would need a sturdy chair to sit in. When I talked to another preschool, they told me that they would purchase a Rifton chair for him, and that I didn't have to get a heavy duty stroller. 

When talking to the medical supply company at that time, I was trying to weigh my options of getting a sturdy (heavy) chair, or getting a lightweight chair. I was told the Kimba Ottobock chair would weigh around 40 pounds but this was very wrong. When I got the Kimball Ottobock Lechey chair it was so extremely difficult to lift in and out of my vehicle that I hated it from the start. It weighed 55 pounds in total. You could take the two pieces apart but it was in extreme pain in the butt. Taking the pieces apart also meant that you had to make absolutey sure that the pieces were back together properly or the chair could fall apart very easily and it did. My son was injured on the bus ride when the chair fell apart on the school bus. So, for three long years I hated the Kimba seat that I had. I sprained my wrist several times lifting it in and out of my minivan and I cursed it every time I had to lift it. 

Blue Cross Blue Shield told me that I could get a new piece of equipment for my son after three years had passed. The old Kimba Ottobock stroller had wear and tear and it had been broken by an airline company previously and repaired. It tends to get very wobbly once a month and the screws have to be tightened with them Allen wrench. 

After the three years passed, I was so thrilled to contact a new medical equipment company. We worked with and NuMotion in Michigan and they were so great and helpful. They got this piece of equipment for us as fast as they could and I got it just in time before the heavy winter snow started. I dreaded any time that I had to drive my son to school due to cold weather with the old stroller, because it meant me lifting a 55 pound chair in and out of my van which I hated. Now that I have the lightweight stroller it is just a dream come true, and I wish I would have gotten this stroller to begin with.


Monday, January 11, 2016

Andy's waking up screaming

Andy has had a couple of times in the last few days were he wakes up in the night or after a nap and he is screaming out of control. I thought he was having a nightmare the first time, but then it happened after a nap also. He wakes up and his face is very red and he is screaming and hard to console. I don't know if he is having a muscle spasm or what the problem might be. Luckily, this morning he woke up OK, and didn't wake in the night last night. Hopefully, it has passed for now.

Thursday, January 7, 2016

If your guitar isn't connecting with your Rock Band 4 delete it and reinstall

We got Rock Band 4 for Christmas, and it is something fun that I can do with my daughter. Andy also likes to play the drums. I sit him on my lap and put my hands over his hands with the drumsticks and he enjoys banging on the drums with me.we connected the drums and the guitar and had no problems for two or three days playing the game. Soon after that we were trying to join the guitar in, and wasn't being recognized. We put new batteries in the guitar and that didn't work. We also restarted the game and restarted the PlayStation and neither one of these worked. Then we finally tried completely removing the guitar from the settings. We had to delete the guitar in the Bluetooth devices and we had to reinstall it as again. This worked and allowed the system to recognize the guitar again and we were able to connect and play the game. I can bond with my daughter while playing the game and Andy also has fun too. It's been a great investment for us we really love it. I can get a lot of frustration out just by singing into the microphone and so does my daughter. So I guess you can say it's been therapeutic for the family as well!