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Construction Zone

Whew! The last few days have been a flurry of activity. I took a small break from writing to focus on some of what is going on in my home.

Our oven died a few weeks ago. Buying a new one was a bit exciting for me since the old one was at least 15 years old. We opted to get a stove/oven combo and just replace both (which were separate and across the kitchen from each other).

My nephew is really, really good at the construction/remodeling stuff that Steve and I know nothing about. (If you are in the St. Louis area and need some remodeling done, BTM Remodeling is the call you should make).

While sitting around pondering what to do about getting the old oven out, my nephew suggested opening up the kitchen wall. I jumped on that as I like light in my house and this new opening will let in a ton of light.

When the old oven is gone (that will happen this weekend…you can see it in the picture), we are expanding my pantry. In a small house, space is at a premium and a bigger pantry will be WONDERFUL.

Thankfully, Brandon is able to go to day program while all the construction is happening. The sawing and hammering and drilling gets to me sometimes. I know it would bother him. Again, a small house means there are not a lot of places to hide.

I was a bit concerned what Brandon would think of the “construction zone.” He likes things nice and orderly and for everything to be right where he wants it. We moved pantry items to a bookshelf in the family room. Once Brandon was shown where the cheez its and chips are now being kept, he was quite happy.

Doesn’t everyone keep their food items in their family room??

Brandon likes his routines and reading a book with Steve is one of his nightly routines. He typically refuses to read with me. But not last night. He sat with me and read the entire book.

I’m not sure what caused this change. Maybe the changes in the kitchen let him know that change is not always a bad or negative thing. I don’t care what caused it….Brandon read a book with me!

Stay well everyone and I will give updates on our kitchen/pantry remodel as we go along.

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Pepperoni and Cheese

Brandon’s food preferences are a bit narrow. He likes what he likes. He really, really likes shredded yellow cheese. And pepperoni. He will occasionally eat pepperoni pizza, but he prefers these two items without the sauce and crust.

Last night he wanted “pepperoni cheese bowl.” I directed him to go make it himself and he looked at me like I had three heads. I do not know why I have never thought about teaching him to make this snack for himself.

He can do cheese in a bowl. I assumed just adding some pepperoni would be easy for him. And then I had to remind myself…Brandon has autism and he knows what he knows. Adding steps is sometimes quite challenging for him. It is my job to teach him these new things.

Brandon did each of these steps with me just guiding him with verbal directions.

We will work on not using the entire package of pepperoni, but he does love it.

Adding the cheese. He wanted to add the entire two pound bag of cheese. I did intervene at that point, because the rest of us like cheese, too.

Pushing the start button on our microwave automatically sets to 30 seconds. We work on appropriate bite sizes every day with Brandon. This bite was a bit big, but he was excited to try his new recipe.

Success!! And now Brandon has another food item he can make independently!

Stay well everyone!

The Chair

I was so excited Friday afternoon when I got the text message from my friend, Jessica. She and Caleb are having their first of the summer BBQ and they want us there. And Brandon was included in the invitation!

I immediately replied we would be there. I didn’t even take the time to ask Steve if he had any other plans. I was going with or without him.

Brandon was stuck on talking about animals for most of the day yesterday. How do I know this? Because he said it over and over. Those days are the hardest for me. Talking about animals doesn’t seem to scratch his itch. As soon as we are done, he starts asking to talk about them again. Over and over.

This was before leaving for our friends house. Not a very happy face.

Thanks heavens Caleb and Jessica know and love Brandon. He had a small tantrum at their house. Some angry jumping and general displeasure that no one would pay attention about the animals.

The angry jumping led to his shorts falling off and Brandon’s refusal to put them back on. He did have underwear on, which made me happy, because that isn’t always the case.

As Brandon started to calm down (he did put his shorts back on), Steve was trying out Caleb’s massage chair. Of course, I had to try it out, too. All four of us agreed Brandon should try it out, too.

I was a bit concerned about Brandon not being calm enough yet and would angry jump in the chair. Yes, that happens and Brandon has broken several chairs and couches in his 21 years on this earth. But those are our items. We did not want him breaking Caleb’s chair.

My concern was unfounded. Caleb helped Brandon get in the chair. Brandon was a bit hesitant at first, but as soon as Caleb hit the remote to start the massaging, Brandon immediately relaxed.

Finally calm and the look on his face says it all.

I know Brandon likes/needs deep pressure at times. I think we may have to start looking for one of these fancy massage chairs. Brandon loved it. He stayed in the chair for 10-15 minutes.

When he was done with the chair, he did mention animals, but it wasn’t nearly as often. It may have helped that dinner was ready by then. Hot dogs and chips always make things better, right?

Stay well everyone!

Needed Information

Yesterday was a bunch of emotions for me. I did manage to get through the drive thru graduation for Joshua. Brandon went with us, of course. He seemed to enjoy being outside. He did discover the track is a bit jumpier than our wood floor at home.

There were some glances when he was jumping, but all of them were positive and happy. The seniors and their families were all excited. I really do hope we get to see something done for Brandon’s graduating class.

A picture of my two graduating seniors.

Today was a good day. My friend, Rick, came over for awhile. Steve got home a bit early from work. And then we waited for the van that brings Brandon home from day program.

When it was 10 minutes late, I assured myself they were stuck in traffic. When it was 20 minutes late, I called the day program. I got voice mail. Then I remembered we have no way to contact them after hours.

I called his regional office case manager, got her voicemail, and left a message. I was hoping she would answer and have a way to contact someone.

At 30 minutes late, I went outside and stood in the front yard. For five very long minutes. All kinds of thoughts went through my head. Accident? New driver who may be lost? I checked the traffic app and all roads were green.

Finally, after 35 minutes, I saw the van coming up the street. I took a deep breath and waited. The driver immediately apologized and noted he had a couple extra clients to take home today. Whew!

I also asked him to put my number in his phone so he could contact me if he is going to be that late again. He was happy to do that. He called me while sitting there so I would also have his number. He really is a very nice young man and he felt bad I was worried.

Brandon was completely unfazed by his late arrival home.

Once Brandon was inside and watching Steve with his just received original Nintendo (he loves that stuff!), I knew what I need to do. I will talk with the director Monday morning and ask her to make sure us parents have some way to contact the drivers.

When I was working with adults with disabilities living in the community with staff support, I had all the house managers have a binder with pertinent information on each client that must be kept in vans. Names, diagnoses, medications, emergency contact info, etc.

I am going to suggest something like this on Monday. I hope the suggestion is received well. I don’t think I am asking too much. Being on the parent end of this is a bit challenging. I am not the director. I am mom. And I worry.

Stay well everyone!

Maybe…

I am a bundle of emotions today. I’m not sure what is causing this.

Maybe it’s not being able to visit with my parents who are in a nursing home. Covid19 has kept them separated from us. I called this morning to check on them and they are doing well.

Maybe it’s because of the civil unrest in our country. My heart hurts for the family of George Floyd and the so many other families like his.

Maybe it’s because we are attending our youngest son’s (Joshua) drive thru graduation this evening.

Maybe it’s because Brandon’s school is holding off on the graduation ceremony for him and his classmates.

Maybe it’s because we have to fight so hard to get services for Brandon. Services he needs.

Maybe it’s because the funding for the services and supports he needs keeps getting cut.

And then I remind myself of all I do have. I have a husband I love and who loves me. I have three wonderful sons I love and who love me.

I have family and friends.

I have a home. It isn’t huge or ornate, but it is ours.

We have food on our table and clothes on our back. We have a bed to lay our heads when we are tired.

Brandon may have autism, but he is here with me.

We are in this together and for that, I am thankful.

Stay well, my friends.

No Camp This Year

I am sad. I am sad for Brandon. And I am sad for Steve and I. Brandon goes to a camp every summer and has for the past 9-10 years. We drop him off on Sunday afternoon and pick him up on Friday evening.

Brandon likes camp. He does really well there and we have never had one complaint about his behavior. There are so many activities for the campers, who all have developmental disabilities. Their time is so structured and by the end of the day, everyone is wore out and sleeps well.

Leaving for camp 2019

The camp counselors are young people from around the world and are trained well. The one and only time we got a call was medication related and it was simply to clarify. The camp is well run and a nice break for our son during the long summer months.

This year, Brandon will not be going to camp due to the global pandemic that is Covid-19. While I understand why he isn’t going and agree with the decision, I am still sad.

In the past, when Brandon was at camp, Steve and I would get away for a few days. Only once did we go further than a 4-5 hour car ride away. When our other boys were younger, we did take them to Disney World.

There were those who questioned why we wouldn’t take Brandon to Orlando with us. Why we wouldn’t let him experience a “normal” vacation. Why? Because he would have been miserable. Heck, it was overwhelming for us with all the people, sounds, smells, lights, etc. and we do not have autism.

I can’t imagine Brandon having to deal with all the stimuli of Disney World. And the crowded plane ride to Florida. We also knew he was having fun at camp.

Last year, Steve and I went to Memphis, TN with our friends, Jessica and Caleb. It was so much fun. We visited Graceland and the Civil Rights Museum. We ate some good southern BBQ, swam, and just relaxed.

Steve looking totally like a tourist at Graceland.

This summer, we were planning to go to Nashville, TN with Jess and Caleb. We had planned to visit The Grand Ole Opry, Music Row and other landmarks. With more relaxing while not having to worry about Brandon’s care.

I think it is important for us parents of kiddos with special needs to get these breaks. I have always used this time to recharge myself. To focus on my needs a bit more. To have adult conversation without being interrupted to talk about animals.

This summer will be a bit different since Brandon now goes to day program, instead of school. There is no summer break for day programs and for this I am thankful. But I am going to miss my time away with my husband.

I think Brandon will miss his time at camp.

Stay well everyone!

I Stand With You

I see you.

I hear you.

I stand with you.

What can I do to help?

I heard these words spoken today in a video sent to me by a friend. These words resonate deeply with me.

I am trying to figure out how I can help. I want to help. I accept help for my son with severe autism. I am so thankful for the employees who care for him every single day at his day program. The majority of those employees are African American.

I had a conversation yesterday morning with the driver of the van that safely gets Brandon to/from day program. I thanked him for what he does. I told him I appreciate him. I told him I hope he is safe. He had tears in his eyes and thanked me for my words.

Stay well, my friends. Stay safe, my friends.

Trying Rice

One of the areas I find more challenging about Brandon’s autism is his food preferences. He has a few select foods he has eaten for years: hot dogs, cheese, cheezits, regular potato chips, mashed potatoes, tacos with no lettuce, bacon, and a few other items.

To me, there seems to be no rhyme or reason to his choices. Some of his favorites are quite bland. Some are a bit more spicy. Some have a smooth texture and some have a crunchier texture. Of course, Skittles are his very favorite junk food in the whole entire world. And gummy worms.

Getting Brandon to try new things is hard. If it doesn’t smell good, he will not eat it. The shredded cheddar cheese he likes is from Aldi. If I get a different brand from a different store, he may not eat it. With macaroni and cheese, he likes the old fashioned kind with the powdered cheese. He will not touch shells and cheese, which I love.

Last night, Steve made some yellow rice with grilled chicken cut up in it. The entire time it was cooking, Brandon was saying “no thank you rice.” We told him he did not have to eat it. But when it was done and we were eating, he wanted some.

The following pictures are what that looked like.

Smelled it and from the look on his face, we weren’t sure he was going to eat it.

I guess it tasted okay. He ate four bowls of it!

And of course, he had his iPod right with him with his favorite movie, Toy Story, playing.

So, for now, we assume Brandon likes yellow rice. He did try a slice of avocado and that was a big “no thank you cado.” That was fine with me, more for Steve and I.

Stay well everyone!

Visits, Donations, and Trees

We have had more visitors this week. My friend, Rick, came over to have lunch and watch some TV with me. My nephew Jim showed up yesterday morning for some coffee. And Steve and I hung out with our friends, Jeff and Anne last night at their house.

Jeff and Anne’s daughter, Lexie, recently graduated from college with a degree in special education. And she will be starting her career in the fall at a local school district. I don’t know if she wanted it, but I did give her some advice: listen to the parents and create goals that make sense to the student.

Miss Lexie is a good kid and I am certain she will be a great teacher for those with disabilities. She is going to come over soon and hang out with Brandon for awhile. Brandon will love her!

Today, our friends, Jessica and Caleb, showed up with donations for Brandon’s day program. Three computer monitors and a huge box of arts and crafts supplies. I will be sending the arts and craft stuff with Brandon tomorrow. Steve is still working on a couple more computers to donate later this week with the new monitors.

Remember, if you are cleaning stuff out, don’t throw it away if it can be donated. Jessica was worried some of the arts and crafts items might not be utilized. I assured her more than once that the day program staff and clients will be thrilled with all of it! There is something for every ability level in the box.

And finally, Brandon supervised the planting of the cherry tree Steve gave me as an early birthday present. I LOVE cherries! My hubby knows me so well.

It has been nice to be able to be outside this weekend. There was no rain and a whole lot of sun!

Stay well everyone!

A Night Out

I am tired of being at home. I am a bit jealous of the people I live with who get to leave the house for work or day program. They get to see other people. They get to communicate with others.

I went to the grocery store yesterday and it was absolutely wonderful. I wore my face cover. Others did, too. I only saw two people who were not wearing masks. Maybe I should have shared the social stories Brandon and I went over and over with those two. If my son with severe autism can understand the importance of masks, I feel like others can, too.

Tonight, Steve and I have been invited to a friend’s home for some socializing. We will have supper and enjoy some adult beverages in their back yard. When we received the invitation, I asked Steve to see if Brandon’s brothers would help out while we are gone. And they said yes!!

I love Brandon. With all my heart. But, occasionally, I need some time away from him. I need a break. And, I would venture to say, Brandon needs a break from me, too. He and I spend a lot of time together. I get frustrated when he says the same thing over and over. I bet he gets tired of me saying “say it once” over and over.

So, tonight, Brandon will be with his brothers. And he will be fine. His brothers will be fine. And Brandon and I will be better for it. I will do my best to not worry and to not text every 15 minutes to see how things are going. If there is a problem, they know how to contact me.

It is hard trusting others with my son with severe autism. I trust my other children. They watch Steve and I interact with Brandon. They know he loves The Simpsons and Mario Kart. They know what he likes to eat and drink. They know to watch out for choking when Brandon eats (and they know what to do if he does choke).

They know he likes to jump and how to direct him outside if angry jumping happens. They know he likes to talk about animals. They know Brandon loves his iPod.

And I know they love Brandon.

Stay well everyone!