Monday, November 20, 2017

Andy and the baby

Sometimes, Andy is okay with the baby playing with his toys. We have to watch that he doesn't reach out and grab her and squeeze her. He likes to do this to people or objects. He reaches out and starts squeezing really hard. If the baby starts squealing, Andy will not tolerate this. He will have an immediate meltdown. He just had one in the kitchen. I was trying to feed him dinner, and she walked up in her walker. She only made a few small noises, but he lost it. My husband was able to calm him, but I think it took ten full minutes. He had immediate tears falling from his eyes, and he was trying to wipe them away, while fully screaming. We took the baby to a different room to play.

Andy always wants the toy that the baby is playing with. It's nice to see them playing together. The baby cries sometimes now when Andy makes his high-pitched squealing noises. When she gets upset, we take her to a different room. She is trying to figure him out. They both smile at each other, but they can both also upset each other pretty quickly too.

Thanksgiving break ahead

Andy's been enjoying school, but Thanksgiving break is just ahead. He will have three days off of school, including the weekend, it's five days of no school. This is usually pretty tough for Andy. He gets pretty bored with staying home all day. We don't take him out, due to meltdowns in public, and where to change his diapers? We might take him up north for a couple of nights to break up the monotony of being home for several days with no school. I hope it helps.

It's been tough to study for exams, and care for the baby. My husband does most of the caring for Andy lately. I feed him and play with him too, but most of the heavy lifting has been done by my husband. He is also working hard on doing everything that needs to be done for the new handicapped-accessible house build. There are a lot of details that have to be figured out.

I'm also hoping we can be free of viruses this Thanksgiving. It seems someone is always sick during the holidays. We've been trying to take extra vitamin C, and I'm using fish oil to help my memory. I am also going to start giving Andy more kids health supplements as well. He puts everything in his mouth, so this makes him more susceptible to illnesses.

Friday, November 3, 2017

Having Andy chew on the babies receiving blankets

We are trying to have Andy not chew on his shirts and use the babies receiving blankets instead. We ask him not to chew on his shirts, and don't put the bibs around his neck anymore. The bibs on his neck, just promote him chewing his clothing, and they get his shirt soaking wet underneath. Since we are using burp cloths less and less for the baby now, we are letting Andy have them. He was keeping himself busy with a cloth while we were closing up our camper for the winter.

We are building a handicapped accessible ranch house

We are building a new house that will be completely handicapped accessible for Andy. There will be a handicapped ramp on the front of the house. There will be wider hallways and doorways. Andy's bathroom will be like a wet room with a roll in shower and tub next to it. We will have an open concept kitchen and living room, and a playroom/office over to the side. We are building a garage big enough and tall enough to hold a tall full sized handicapped accessible van, plus other cars.

We've been picking out building materials, and I've also been trying to organize and consolidate things here at home, and study when I can. It's been busy. I'm definitely worn out.

Wednesday, October 18, 2017

Hard to get out with Andy

We tried to take Andy and the baby to a party that started at 6pm, knowing that they both go to bed at 7:30pm. It was a bad idea from the start. We had no sitter available, so we decided to all go. It was raining, everything was soaking wet. Someone was blocking the driveway, and there was no where to park. We would have had to park about 20 houses away, so my husband dropped me at the curb with the baby to walk across the soaking wet grass, because someone was blocking the drive completely. My husband squealed off away and was so mad. I called him when I got inside. 

"There's no way for me to even get Andy inside the house, I'm not coming in. Just visit for a bit, I'm going to drive him around, and I'll come back to get you." Andy had been having a very bad day all day at home with crying and moaning and whining. He was enjoying the car ride like he always does. Inside the house, it was super crowded. There were about 50-60 people inside a 1200 square foot house. My baby was clinging to me, and tired. It didn't even seem like a remotely good idea to try to drag all 50 pounds of Andy into the house and shoe horn him onto a couch where he would have to sit there with his headphones on and try to play with a toy to stay happy. I called my husband when the baby finished her bottle and said "Let''s go, I'm ready". 

We sometimes feel like prisoners in our own home. We really cannot go out, and if we do, we have to be divided. Someone stays with Andy, someone gets to go out, but they're worried about how he's doing. No one understands what we must go through to go out, and how it often just keeps us home.

I am thrilled beyond belief that I get to go to Nursing school it gives me a huge break, and I am thrilled that Andy gets to attend school and get out of the house. I think the day we tried to go to that party though, it was quite a smack in the face that we are not like everyone else. We don't get to just go out and do what we'd like to do. Everything has to be so calculated for things to work out for us. We can't just take our kids to the beach and let them play while we fall asleep on a blanket. Or leave our kids home while we head out to a bar or party, which is NOT something we want to do, but our friends and family are doing this now that their kids are teens and they have much more freedom. Andy of course, can and will never be left alone, it is just a comparison of what others are doing and we cannot ever fathom doing. It's also causing us to not be invited out to do things either, because people know how difficult it is to do anything. 

Andy's doctor asked me, "How do you guys get out?"  and I started crying and said "We don't." It's too difficult to even begin to find a place to change Andy's diaper, besides taking him back to the van. Even then you have to worry about someone in the public seeing you, or if its freezing outside, it will take five to ten minutes to warm up the car just to be able to lay him down on the seat and change him. His outbursts are the biggest thing to have to worry about and all the stares we will get from others. I know its natural for someone to look when someone is screaming, but the looks we get say "get that kid outta here" and we don't feel comfortable. He needs to get out of the house too, but unfortunately that will just be school, driving him around in the van, and appointments for now. I'll find a way soon to more with him as a family.

Monday, September 18, 2017

Andy is chewing holes in his shirts

Andy loves to chew on bibs and his shirts. He is really starting to ruin his shirts by grabbing the collar and chewing on it for as long as he can. He usually requires several shirt changes at school due to soaking his shirts from chewing and drooling. He is tearing up and ruining his bibs and we have to throw them out, because they are disintegrated. He is now ruining shirts at a fast rate. They are getting so filled with holes that we can't have him wear them again. I already have to cut buttons and zippers off of all shirts before he wears them. Otherwise, he will chew the button off and crack it right in half with his teeth. The buttons and zippers also present a choking hazard for him.

I'm having to buy him all new shirts, and looking for stuff on sale and new with the tags at resale shops for cheaper. I also started letting him chew on the baby's receiving blankets, since she has so many. He enjoys holding them and chewing on them, but eventually throws them to the side and forgets they are there. He will then go straight for the collar of his shirt. Sometimes, we are removing his shirt until bed time, when he won't stop chewing on them. We then put his shirt on after he has fallen asleep.

The most frustrating thing of all is that Andy WILL NOT pick up food and put it in his mouth. EVER. Even after years of trying to get him to do it. He just will not. He will put other objects in his mouth though, like blankets and clothing with absolutely no problem. If it is food though, he will not do it. He will pick it up and throw it on the floor, or make a mess with it, but won't pick it up and bring it to his mouth. It's very frustrating.

Friday, September 8, 2017

Andy is happy to be back to school

Andy just LOVES being back in school! Thank God for school! Andy is so happy to walk up to school and see his teachers and friends. Being in school really changes his behavior at home too. He isn't so quick to meltdown, but he still will. He's gotten out of the house, for a change of pace, and we get a break as well. Andy claps and squeals on the way to school and is smiling and happy. It is just so nice to see.

Saturday, September 2, 2017

Summer Blues

So, summer was tough. We didn't have any awesome and exciting vacations. We don't feel we can do that type of stuff with Andy. We feel strapped to the house. I can't really look at Facebook. Seeing everyones photos of their weekends away, and trips to the beach makes me sad. People also don't understand that we CANNOT and do not have the freedom to just do whatever we would like to do like THEY do.

Even having people help us with Andy, we feel we still need to be here. When he gets out of control, we take him up to his room. Or I put him in the van and go for a 30 minute drive.

We tried to keep Andy busy with our mother-in-law, and by me driving him around to places to make him happy. I drive to my mom's and bring him inside, and then the infant, and try to hang there for two hours. Andy plays happily on the floor with toys, but then after two hours of that and a snack, we are ready to head back home.

Overall, Andy hasn't done well on most days. Meaning he is crying and upset and bored. He has a few good hours, and a few bad hours, each and every day. I wanted to plan for a better summer for him, but the baby was here this time around and was very consuming.

Next summer, I'd like to have therapy appointments and things scheduled for him. We are also trying to network more and find out about things for him to do. The problem is that this year we didn't want to put him in any summer camps, because we don't trust people with our completely non-verbal son. We are always concerned about possible abuse, even now there was an incident of a special needs boy being raped at Novi High School last year. He was put into a seclusion room with a 200 pound special needs boy unsupervised and was raped. This kind of stuff paralyzes us with fear of who we can and can't trust with our son. He is basically like a helpless infant.

Friday, September 1, 2017

Back to school

Hurray! Andy will be able to return to school in a few days. He will be so thrilled to be at school with all the kids. He loves it so much. Whenever we take him there, he just sits and watches all the kids, while clapping and squealing. That's when he's truly happy.

Saturday, August 5, 2017

Trying to get through summer with no school for disabled child

Oh how Andy really needs the structure of school again. He gets bored and has meltdowns every day. My mother-in-law has been helping play with Andy during the day, while I take care of the baby, whom is now 7 months old. I sometimes let Andy play with toys in a sink full of water, but of course, it makes a huge mess. All of his clothes get soaked, but he is so happy.

He also loves to drive around in the car, so I will take all three kids driving around to get his meltdowns to stop. The baby doesn't care for being in the car for long though, so I can't win.
Andy is also becoming more difficult for me to lift in and out of the car, so I don't do this every day.

We will soon be needing to purchase a full size van, and have a wheelchair lift added to it. We don't want to make the purchase for a couple years though, so we are trying to make things work with the junky Chrysler town and country mini van.

What a pile of crap that van is. I started out liking it, but things started falling apart with it at only 30-40,000 miles. We'd only had it for 3-4 years when the backup camera stopped working, and the blindspot sensors were toast. The tailgate button doesn't always open the trunk. The rain sensors for the wipers don't really work anymore on the windows. Then the air conditioner just three weeks ago stopped working just in time for summer. I hate this van. It's been the worst vehicle I've owned. I would not recommend anyone buy a Chrysler town and country. Ever.

So, just trying to squeak through this summer with this horrible van, and survive the meltdowns from Andy. He is getting stronger too, and can hurt us easily by punching us. He usually does this when we are carrying him up the stairs. We plan on building a ranch house soon, so that we won't have to carry him anymore. We could just wheel him around in his chair to his bed at night, and if he needs a cool down period in his bed. More on that to come.