There are all kinds of emotions and thoughts we have about adding a new member to our family. We've been hesitant to have more children for years, due to our son being severely disabled. I found myself always feeling sad about having to suppress our wishes to have more kids out of fear of the unknown. The question of having more kids or not has been answered for us, and we are now expecting this Christmas.
I just became a registered nurse, and my ten-year-old son is infant-like, has frequent meltdowns, and cannot stand without support. He is missing a piece of DNA (chromosome 9q22.2) but we are unsure if it made him disabled. He has a diagnosis of severely multiply impaired, paucity of white brain matter, partial agenesis of the corpus callosum, microcephaly, deformities of the ankle and foot, and Autism.
Sunday, August 14, 2016
Friday, August 12, 2016
How I survive in public with my Autistic child
I took Andy to Ikea just a few days ago, we went for breakfast and to pick up a few things. Andy really enjoys riding around in the car, so he really enjoyed that part. I pushed his wheelchair into the store with no problem and we rode the elevator. I got our breakfast and put it the trays on the cart and dragged it behind us as we made our way to the table. Andy was good until he heard a woman sneezing behind us several times. Then the whining starts and his lip is sticking out. "Okay Andy, lets put on your headphones". I start playing his music, and he's fine during the next half hour of shopping.
Next, I had to stop by my brother's house and they have a one and two year old. Andy had to keep his headphones on the whole time, because any peep he hears from the kids makes him cry. He stayed busy with a bead toy while we were there.
The next day, I took him to an outlet mall for back-to-school shopping. The headphones were a lifesaver again. I charge them at night or in my car on the way there to make sure they'll last for several hours. Andy started whining in the first store we went into until I put his headphones on.
We are going to the one year old's family birthday party this weekend, and I will definitely be bringing the headphones and nano! They were also very helpful at a camping weekend we just took.
Monday, August 8, 2016
American Girl Store now open in Novi, MI
I got to go visit the American Girl store today with my daughter at 12 oaks mall in Novi, Michigan. We've traveled to American Girl stores in other states. This store is a temporary pop up store. It doesn't have a cafe, but does have a hair salon desk at the back of the store. The store will be open until January 31st, 2017. American Girl will decide later whether to have a permanent location in Michigan or not. We visited on the Monday after the opening weekend. We had about 15 people ahead of us in line at the check out, but we were able to just walk into the store. Opening day had people in a long line wrapped throughout the mall, and only those that got tickets could get in, a mall employee told me.
The store is located on the second floor near Nordstrom. The store also had changing rooms, books, rainboots and limited accessories for girls. Previously, if Michiganders wanted to visit an AG store, it would require a 4-5 hour drive to Chicago, or Columbus. Now that the store is here in Michigan, I'm sure tons of girls will want to visit, given a way shorter travel time. I would recommend visiting during the week, because this mall is normally very packed on the weekends, and so far the store is a huge hit.
Sister time
Andy loves time with his sister. It's usually only at mealtime and barely ten minutes a day otherwise. I try to point out to my daughter how much Andy lights up and squeals when he sees her enter a room. She often doesn't want to be around him due to his frequent outbursts, and doesn't want to pay him attention when she's with her friends.
Andy loves when she plays with him though, if she does. Andy loves toy pianos, and also likes to watch other people play the piano. She started playing it, then started singing, and he was thrilled.
I know someone who grew up with an impaired sibling, and she tells me not to get on Gabby too much to pay him attention. She told me to just let her be with her friends and not drag her back to him, and make her spend time with him. I don't do that, but I do point out to her when he is ecstatic that she walked into the room, and could she say "Hi" to him for a minute?
I don't see any harm in that. My daughter has explained to me that she doesn't want to be bothered when she's with her friends, and I understand that. But I don't want my son to live his life in the same house as his sister and they never interact. That isn't right. So, we at least have mealtimes together, and traveling in the car, and sometimes ten minutes of playtime when she's not too busy...
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.
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