Two different pictures. It took me about three weeks to convince Brandon to wear a mask. A friend knew of my struggles and sent a social story to help. It worked! Brandon will wear a mask.
Steve took Brandon to Dollar General a few days ago. Brandon (and Steve) wore their masks. Steve did let me know that Brandon wasn’t very happy about it, but he did it.
By the way, Brandon LOVES Dollar General. So do we. They have very inexpensive headphones and Brandon goes through at least three headphones per week. He also always gets a box of Zebra Cakes when we are there. Those are his favorite snack cakes.
See, wearing the mask as it is meant to be worn.
Brandon will wear a mask at day program. He gets on the van every morning with the mask properly placed over his mouth and nose. I buy disposable masks for Brandon at one of our local quick shops.
The last two days, this is how Brandon has come home from day program. I thought maybe yesterday was just a fluke. Nope. I will call tomorrow and ask the director what is going on.
He’s wearing his mask like a necklace. I don’t think they work very well like that.
There are times when it feels like autism has kicked me in the rear end. Last night was one of those nights. Brandon kept repeating “set timer talk about animals” over and over. And over. And over.
He had talked about animals throughout the day with both Steve and I. I have worked with Brandon the last few weeks about waiting until the timer goes off and then we will talk about the animals. He likes knowing when it will happen and I never set the timer for more than 30 minutes.
All of this had been working well until last night. I don’t know what happened, but at some point it became about saying “set timer talk about animals” only. He no longer wanted to talk about the animals, he just wanted to say it over and over.
How do I know this? Because Brandon would not talk about the animals when the timer went off. He would continue to say “set timer…”. Ugh. I wish I understood. When did it shift to just being about saying the same thing over and over as opposed to actually talking about the animals? Why didn’t I see it coming?
I do know from past experience when this happens, that Brandon needs to work through the obsession. We ignored his verbalizations. He got angry with us and there was a tantrum with a lot of angry jumping. There is a new hole in the wall.
However, there was not a meltdown. When Brandon realized we weren’t going to respond, he did stop saying those words. He finally sat down and listened to his iPod. He played Mario Kart. He sat outside for a bit.
When he went to bed, the obsession started again. We promised Brandon we would talk about animals with him when he woke up, but sleep must come first. He finally settled down and slept all night.
Brandon was in a good mood this morning and talked about animals with Steve. And then he left happily for day program.
I so wish I understood these parts of Brandon’s autism better. But we continue to do the best we can.
I think the staying at home thing is starting to get to all of us. Steve and I snipped at each other all day yesterday. The rain does not seem to want to stop. And Brandon is obsessing about animals and which book he is going to read with Steve.
We decided not to take Brandon to Cabelas this weekend. I really don’t want to risk getting sick with the Covid. If I had to be hospitalized, who would take care of Brandon? And, God forbid, he would get sick and had to be in the hospital, he would be there all by himself. I can’t even imagine what that would look like. So, no Cabelas for us just yet.
Today has been talking with Steve about animals (again) and watching four more episodes of The Simpson’s. We are almost through season 8 now. I have always liked this show, but am getting a bit tired of it. But Brandon loves it, so we watch.
There were some bright spots, though. My nephew (he is 7 years younger than me and a really good guy) visited with us for some coffee and good talks. When Jim got here, I asked Brandon who he was. Brandon said “Alan.” Ummm, no. But Alan is my brother and Jim’s dad so at least he was in the right family.
Our friends, Shane and Suzanne stopped by this morning. Brandon was happy to see them and sniffed and smelled both of them. Brandon loves them! Suzanne loves to bake and has been doing a lot of that during the quarantine. We are so happy she shares with us. Of course, Brandon wanted no part of the blueberry muffins, which was fine with me. They were delicious!
When I think about the last ten weeks we have been “shut down”, i think we have weathered it fairly well. Brandon was home with me for six weeks and, all things considered, was really, really good. He seemed to get it.
We struggled with whether or not to send him back to day program when they opened back up. We did choose to have him return and I know in my heart it was the right decision for Brandon. He leaves every day with a smile on his face and talks about his friends when he gets home.
Brandon is home today because it is Memorial Day. We will grill and enjoy the sun (until it starts raining). And tomorrow, he will go to day program and see all his friends. If I am being honest, I am a bit jealous he gets to leave the house and see people who don’t live in our house. I am so happy he gets to, though!!!
I hope my USA friends have a nice, relaxing Memorial Day.
As our children get older, we wonder what will they become? Will they find their passion? Will they find that one partner who will love them and treat them well? Will they be happy and healthy without me there to oversee it all?
With Brandon, it is a bit different. Brandon has severe autism with sensory issues and communication challenges. Steve and I are his legal guardians. We make the huge life decisions for Brandon. The decisions like what day program to attend, which doctors to use, medication changes, things like that. Of course, if any program Brandon attends does not make him happy, we will find an alternative.
Brandon guides his decision making with foods and activities. We follow his lead with those things. But the big decisions, that’s Steve and I. And it will be that way for a long time.
What are our hope and wishes for Brandon in the coming years? Like many parents, we hope our adult children move out of our house. This includes Brandon. We know Brandon’s adult living situation will look much different than our other children.
There have been a couple of people who have said we should keep Brandon at home with us for as long as possible. And these same people said we should have him at home with us until we die. We absolutely do not want this scenario to happen.
We would like to see Brandon living with a couple roommates and 24 hour staff. We would like to see this happen within the next 3-5 years (we are very realistic about the funding issues and the wait list that comes along with that list).
I know this can happen for Brandon. Before I stayed home to take care of Brandon, I was employed by an agency as one of the directors of the community living program. This program was exactly what I described above…2-3 roommates with 24 hour staff.
Why do we want this for our son? Because, we feel, he deserves it. He needs to be able to live as independently as possible. He deserves to have this opportunity. I have seen the community living arrangement work for a whole lot of adults with developmental disabilities.
And let’s be realistic. Steve and I are not going to live forever. Brandon’s brothers know, and are willing, to take over Brandon’s guardianship when we are no longer able. But they are not responsible for housing Brandon with them. They will have their own families to tend to.
Brandon making this move before we are no longer able to care for him will only help him. He can move with our help and we will visit with him in his home. And he will visit with us in our home. We will still take him to Cabelas. We will still take him to the zoo and the Science Center. Brandon will make the transition with our complete involvement. I can’t imagine this happening without our help and input for him.
And to be quite honest, Steve and I will enjoy having an empty nest. We will enjoy watching all our boys grow to be the best and most independent they can be. We will love the staff who take care of Brandon. And we know they get to go home to their families at the end of a shift and rest for a bit before coming back in.
This is our hope for Brandon’s future. I hope we are able to see it through.
I was recently a guest on Tosha Rollins podcast “Autism in Action”. She is very active in autism education and I was honored when she asked me to be a guest. Tosha’s podcasts can be listened to here: https://anchor.fm/autisminaction
Click on the play button below to listen to my interview with Tosha.
Another question I get asked frequently when someone becomes aware I have a son with autism: does he show normal emotions?
I usually want to ask “what’s normal?”, but I don’t. But, seriously, what does normal mean? My emotions are mine. I can be happy, sad, upset, angry, etc. and those who know me well know what my emotions are saying.
I don’t express sadness the same way Steve, Brandon, Alex, and Josh do. I don’t express happiness the same way they do, but I know what I am seeing in them.
I like to think it’s the same way with someone with autism. We know when Brandon is happy…he smiles and laughs. We may not always know what he is laughing at, but we know he is happy.
8th grade graduation.
We know when he is mad. Angry jumping and very loud vocalizations. We always try to figure out what is making him mad. Sometimes we get it right, sometimes we don’t. But we keep trying.
I have made a conscious decision to never share pictures or videos of Brandon when he is angry or going through a meltdown. I would not want anyone doing that to me and I won’t do it to any of the people I love.
I will write about it, though. Why? Because it is part of who Brandon is. And it is hard. And it is challenging. And I want people to be aware of some of the not so fun parts of Brandon’s autism. I can talk about what has worked for us and get some tips from others who have been through it.
Below are some pictures of Brandon when he is happy, playful, and peaceful. We have a lot of those!
To go or not to go? That is the question weighing on my mind right now. We live in Missouri and we are slowing starting to open back up. And now that begs the question…do we take Brandon back to Cabelas?
Don’t let Brandon’s lack of smile fool you…he LOVES Cabelas.
When the stay at home order started, Brandon was very, very obsessive about going to Cabelas. He loves the animals. He loves talking about them. He loves seeing them. He loves everything about them. But we couldn’t go to Cabelas.
It took about three weeks for Brandon to stop asking for someone to take him. Lorie (Brandon’s awesome, wonderful support worker) would face time with him and all he would talk about was going to Cabelas with her.
It has been nine weeks since Brandon has been to his favorite store on earth. I have pictures of every single animal at Cabelas. He has no interest in looking at these pictures. He tells me “no thank you pictures.”
With the above scene at Cabelas, Brandon always says “put claws away play nice with friends in jungle.” Makes me smile every single time.
But he is no longer obsessing about going. Steve and I were talking about this last night. Brandon will now wear a mask. We can ensure social distancing. And we know he loves Cabelas. Do we risk it becoming an obsession again?
Of course we will take him. Of course we will take the risk of obsession. But I do think we need to handle it differently than we were before. Brandon loves routine and structure. There were times in the past when someone would take him simply to get him to stop talking about it. Brandon knew that would happen occasionally and took advantage of that. Smart kid!
That was our fault. If we say we are going one time per week, then, we have to stick to that. If there are tantrums or meltdowns, then we will just have to work through that. Brandon will get it eventually. It make take one week, it may take six weeks, but he will get it. One time per week means one time per week.
My youngest son, Joshua, has never lived in a home without autism. I thought it would be fun and interesting to interview Josh about growing up with Brandon.
Below are the questions I asked and Josh’s answers. I have paraphrased some of his responses, but ensured he was okay with everything written. Josh has assured me the answers are his and how he feels.
1. What is your first memory of Brandon.
My first memory is Brandon carrying a chair around the house while dad and Grandpa E. Were working on some stuff. I don’t know why he was carrying the chair. It was a small chair, not a big one, and he wouldn’t put it down. Dad and Grandpa let him do it.
2. What is your favorite memory of Brandon?
Without a doubt, when he started playing Mario Kart. He was having fun with a video game and that is my favorite thing, too.
3. What is something about Brandon you are proud of?
It actually amazes me what he can do on the internet. Brandon can find what he is looking for pretty easily. And he asks for help with spelling if he can’t.
4. What about Brandon annoys you?
The absurd loudness when he it trying to get everyone’s attention. The angry voice and the angry jumping.
5. What is something you have learned from Brandon?
I have learned to appreciate and be thankful for people who work with people with special needs. You know, like Allison, Kelly, Lorie, and you (pointed to me when he said this).
6. What does Brandon do that makes you smile?
When he pets the dogs but doesn’t let them lick the inside of his mouth (yes, Brandon does this and we do our best to redirect him and the dogs). It’s fun to see Brandon play with Gucci (one of our sweet puppies).
7. What is something you wish Brandon could explain to you?
I wish he could tell us why he is angry and upset. It sometimes takes awhile to figure it out and I wish he could just tell us. Especially with the medical stuff and when he doesn’t feel good. We can’t just guess but it feels like that’s what we have to do.
8. What is something fun about Brandon?
Honestly, when he is fully happy. It shows all over him.
9. What are Brandon’s favorite foods?
Ha! This is an easy one. Hot dogs with cheese, ramen noodles, cheese, butter, and Skittles.
10. What have you learned growing up with a brother with severe autism?
It helped me be more open minded. And it definitely helped me be more tolerant of loud noises. I do wish people were more understanding. I don’t like when people stare at him and don’t bother to learn about autism.
11. What are Brandon’s favorite things to do?
Another easy one. Mario Kart, going to Cabelas, jumping, eating, swinging, watching old videos of Disney movies, and giving the dogs treats.
12. If you could teach Brandon one thing, what would it be?
How to interact better with our pets and other animals. He loves animals and I wish he knew how to play with them a bit better.
This was a fun thing to do with Josh and I am so glad he was willing to sit with me for a bit and talk about his brother. I know one of Brandon’s favorite things to do with Josh is to give fist bumps.
They may get on each other’s nerves, but the love is there and it is real.
What are the questions that come to mind when you think of autism? Steve and I have been asked so many questions over the years. And isn’t this what helps spread awareness? So what are the questions I get asked most about my son?
1. Does he have a special talent? You know, like Rain Man?
Brandon has a lot of special talents. He knows every single animal at Cabelas. He knows what color fur they have. What color their noses are. He knows where they live. He knows which ones like to fight and which ones live in the water. But does he have a savant skill? No. Nor do the majority of folks with autism. Brandon cannot count cards or the number of toothpicks in a box. He is not good at math. He doesn’t speak several languages. One source says about 10% of those with autism may be considered a savant. And that percentage drops considerably if there are intellectual, language, or other deficits.
In my opinion, Rain Man was a pretty good portrayal of some of the other aspects of autism. The need for routine and structure is really important in our house. Brandon needs to know what is going to happen. Every night, we have the same conversation….”you are going to go to bed, have a quiet body and quiet mouth, go to sleep, wake up, go to day program, and when you get home from day program, you can stay home.” Every night. Sometimes 3-4 times per night. Of course, I change it to match whatever we will be doing tomorrow, but the conversation must be had. If not, tantrums and/or meltdowns occur. And the conversation has to be with me. Not Steve and not his brothers. It is always with me.
2. Was Brandon vaccinated?
Yes, Brandon received all the vaccinations his pediatrician recommended. So did Alex and Josh. So did Steve and I. In fact, Steve asked the doctor to separate Josh’s vaccines after Brandon was diagnosed with autism. Josh received the measles vaccine separately. After that, the doctor said the other parts of the MMR could no longer be separated, so Josh got the full MMR. He received the measles vaccine twice and does not have autism. Personally, I do not believe vaccines are the cause of autism. And there is a whole bunch of research, studies, tests, etc. that have debunked this theory.
3. Are you able to take him into the community?
This is the question I struggle with the most. Of course we take Brandon into the community. Why wouldn’t we? Have we had challenges with doing this? Of course, but who doesn’t. When Brandon was much younger, it was a bit harder. There were many tantrums and meltdowns in the grocery store or at his brothers soccer games. We did short trips out for awhile and would gradually increase the time. We learned to ALWAYS make sure the iPod and headphones were with us.
How does any child learn to be out and about, whether they have autism or not? Practice. Practice. Practice. It just may take more practicing with a person with autism.
Steve and I also realized that sometimes it is just better for everyone if one of us stays home with Brandon. So we tag team. And we switch off who gets to go and who gets to stay home. And now that Josh and Alex are older, they will stay with Brandon so Steve and I can occasionally get out by ourselves. We actually had a grocery store date a couple days ago!
What questions do you all have about autism? I am an open book. Ask me anything you want and I will do my best to answer.