Autism IS 24/7 365. It is hard and it can be incredibly frustrating. Steve and I don’t get away by ourselves very often. The logistics are what they are. But today, it felt like all the planets aligned and we got away for a bit.
This afternoon, St. Louis was a wonderful 60 degrees. And today was our 3D stained glass class with our friends, Jess and Caleb. We went out to lunch before our class. And we met up with a friend of mine from my hometown to get my Girl Scout cookies. Thank you, Melissa!
We ate lunch with our friends and there was no cheese involved. And we didn’t go to McDonalds or Taco Bell.
The class was harder than I thought it would be. I am not a master at stained glass. Steve was much more focused than I and it shows in his 3D cactus. But it was fun to be out with my husband and friends with no worrying about Brandon.
Our friend, Suzanne, hung out with Brandon at our house. Brandon has known Suzanne since he was 6 years old. She said he was lovely and she even sang some songs with him. I guess Brandon likes her voice better than mine, because when I try to sing with him, he tell me “no thank you, mom”. Ha!
I feel a bit more rested and ready for the week now. Brandon will be going to day program three days this week. He has told me “no school” more than once since we have been home. He is ready. And that makes me happy.
Below are mine and Steve’s cactus creations. Can you tell that Steve is definitely more focused than me?
Half a snow day here in St. Louis. Icy, snowing, sleety stuff everywhere. I got the call around 10am that school was dismissing early.
I will admit my first thought was how am I going to tell Brandon that he and Lorie are not going bowling this afternoon.
Sometimes, I do not give Brandon enough credit.
He came in from the bus and asked about Lorie. I told him today wasn’t going to work because of the snow. I reminded him we want Lorie to be safe at her home.
He looked at me, said okay, and went to his room. He then slept for three hours.
When he woke up, Steve and I took the bandage off the stitches. Actually, I let Steve take the bandage off because I didn’t want to be the one to pull it off. We were afraid it was going to hurt. There’s a lot of hair in his eyebrows.
He stood as still as a statue while the bandage was being removed. Brandon let me clean it, put Neosporin on it, and another bandage. Not one complaint.
And then we talked about Lorie and bowling. I told Brandon she would be seeing him in a few days. And he hasn’t asked again. That was 30 minutes ago.
I was feeling anxious about the change in his schedule. It’s almost like the roles were reversed today. He kept me calm.
My vacation was awesome!!
We stayed with my brother and sister in law and they showed us a great
time. We visited the Garden District,
Jackson Square, Bourbon Street (where I had a wonderful Hurricane Daiquiri),
and took the airboat alligator ride. If
you are ever near an area where they have these boat rides….DO IT!!!! It was so much fun. We ate.
A lot. Shrimp, jambalaya,
crawfish, catfish, alligator chunks, and chocolate. Yum yum yum!!!
I was with family. I
hadn’t seen my brother and sister in law in a couple of years. Their youngest daughter was home from college
on spring break. It was going to be such
a good time. And then I lost it. The first night at their house, I started
crying and just could not stop. I was
tired, I may have been a bit cranky, and I was full of really, really good
crawfish, jambalaya, and wine. And I
could not stop crying. I called my
husband and cried to him. That didn’t
It was a good cry.
The kind that made my nose run and my eyes swell. I sat on their patio and sobbed. I went back inside their house and cried some
more. What in the world was wrong with
me? I had been looking forward to time
away for weeks. I knew we were going to
visit cool places and see cool things.
And I was spending time with family.
My mom always told me that I wear my heart on my
sleeve. She liked to tell people that I
never had an emotion that I didn’t share with someone. My brother and his wife certainly saw all the
emotions that night. The morning after
my good cry, I woke up and apologized to my sister in law for my mini
breakdown. And she looked at me and said
“you deserve it”. And in that moment, I
knew I did.
The past four months were really, really hard. I was exhausted emotionally and physically
from dealing with the obsessions that seem to encompass Brandon. I felt guilty for being away, for enjoying
myself. How could I be eating great
food, seeing amazing alligators, and sleeping through the night when, at home,
Brandon was still a bit obsessive about Mario Kart?
And then I realized that I needed to be away. I needed to do something that was just for
me. Brandon and I needed a break from
each other. He did well while I was
gone. Of course he did. My husband and other sons know the deal. They know how to handle the obsessions, the
jumping, and the repetitive nature of Brandon’s conversations.
When I arrived home, my husband gave me a huge hug. J and A both gave me big hugs. Brandon saw me, walked up to me and said
“play Mario Kart”. And just like that, I
was back and all was right with the world.
I was able to laugh about it and move on. And so was Brandon.
Spring break for Brandon is this week. It has been okay. His support worker has been here to help and
I feel a bit more patient. We are both
sleeping better and seem to like each other a bit more than we did
pre-vacation. We always love each other
and we like each other most of the time.
The lesson I learned? I need to do more stuff for me. Just me. I need to work on the crafts I’ve started and haven’t finished. I need to read the books I got for Christmas. I need to focus on me sometimes. Because it is good for me. But it is also good for Brandon. He and I needed a break from each other. And it was good.
When I was growing up, I remember my mom going on “girls trips” with her sister, my aunt. They would take weekend trips to St. Louis, Nashville, wherever they wanted to go. This was in the days before smart phones, laptops, etc. It was the phone hanging in the kitchen and that was it. She would call occasionally to let us know she was alive, but that was about it. I have always wanted to be able to do that with my best friend. And now we are!! One of my very best friends in the world is my niece, Angela. She is my sister’s child and she is only 5 years younger than me. We grew up together, we talk/text almost daily, we celebrate holidays together, we share secrets, and we laugh…a lot. She is my go to person when I am feeling down, frustrated, happy, excited, etc. Everyone needs that person outside of their marriage/relationship. Angela is mine. We had decided we would take one of these trips in 2018, but there were reasons we had to postpone. So, 2019 it is and we leave in two days! We are headed to New Orleans to see my brother and sister in law and to experience some new sights, an airboat alligator ride (Woo Hoo!!), food, and drinks (I promised my sister in law I would try a New Orleans Bloody Mary, I can’t promise I will like it.)
As time to leave gets closer, my anxiety is increasing. There are so many things to double check and I want to make sure Brandon’s every minute is taken care of, which is, of course, impossible. It doesn’t happen when I am here, so what in the world would make me think it would when I am not here? I am feeling some feelings of selfishness. This trip is about me and spending time with family that I don’t see nearly enough. Steve is wonderful. He is happy I am going with Angela. He knows how much she means to me. He knows how much I need a stress free break from our reality. Sometimes, we have to take care of ourselves and that is what I am going to do.
My mom always made lists before we would go on vacation. Lists were her friend and would ensure we forgot nothing (although, it seems we always did). My list looks a bit different than mom’s. Here’s what I have so far:
– Who is getting Brandon off the bus?
– Is there enough medicine for while I am gone?
– Is there enough food in the house?
– Does J have anything going on at school?
– Does Steve have all the necessary numbers (Doctor, school, Case Manager, support worker)?
– Did I let the school and case manager know I would be out of town?
– Does Steve know A’s work schedule in case he needs A for Brandon duty?
– Can I squeeze in a haircut before we go?
– Follow up with friends to make sure they check on Steve as Brandon can be a bit exhausting when it’s just you and him.
– Laundry has to be done for everyone.
– Am I going too soon? We are just now coming out of the Mario Kart obsession and I don’t want Brandon to regress.
I have not been away, by myself, for enjoyment in years. Years. My list is stressing me out a bit. I am 99% certain I have everything taken care of on the above list. But I am also certain I have forgotten some things. Will Steve know what to do if the case manager needs to be contacted? Or the support worker? The short answer is, of course he will know what to do. He is Brandon’s father and loves Brandon as much as I do. And he is the best husband/father ever. However, I am the one who takes care of those things on a daily basis. This is my full time job (I may not get paid monetarily for what I do, but I am constantly working). Will Steve do as well as I do? Probably. Will he forget things? Yes. Why? Because he does not handle these things on a daily basis. He relies on me to keep our house running and to ensure that everyone gets where they need to be. That’s been our dynamic for the past 6 years since I stopped working outside of the home. And it works well for us. But now I need to trust that, yes, he will do things differently, he will forget some things, but they will all be okay.
And then I again think back to my mom and aunt’s girl trips. Mom left lists for my dad and I. I am the youngest child and my older siblings were out of the house by then. Did my dad and I do everything on the lists? Nope. We may have even eaten out more that we should have. Laundry may have been sidelined and I am certain neither of us cleaned like my mom did. But we survived.
I was talking with Angela about my list and she has lists, too. She keeps hers in her head (she remembers things much better than I do). Her kids are involved in sports, school activities, youth group, etc. And she has to make sure her husband knows all of the information she knows. We have both asked ourselves if they will manage without us for a few days. The answer, of course, is yes they will. But they will all be happy to have us back home.
My mom’s lists were different than mine and mine are different than Angela’s. Autism adds a wrinkle to my process, but basically, I am like any other mom trying to get away for a few days. And this summer, when Brandon goes to camp for a week (there’s lots and lots of lists for that), Steve and I are taking a vacation and we will NOT feel bad or guilty about it. Well maybe just a little.