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.
The weekend is finally here! We all love a good weekend. Everyone sleeps in a bit. Everyone is a bit more relaxed. Lazy weekends are fun. This weekend is shaping up to be fun, but not at all lazy. We definitely have to prepare Brandon for the busier times.
We know Brandon likes weekends. No school! Home time is not as scheduled as school time. But this weekend will have a bit more structure. Brandon craves routine. He enjoys sameness. And when we switch it up, he needs advanced notice to help him process what’s coming.
Friday – Brandon and I went to Target. I promised him cheese hotdogs and cheese hot dogs he shall get. We don’t go to Target often, but trust me, he knows exactly where the cheese hot dogs are. And the frozen waffles.
Tonight, he and I will talk about what we are doing tomorrow. Steve, Brandon, and I are going to my hometown to visit with family. This trip requires some planning and preparation. We have to have the iPod charger (the longer cord that will stretch to the back seat) and an extra set of headphones, just in case. Medicine has to be packed and some snacks for the 2 1/2 hour drive.
I will also let him know that we will be getting pink cookies from my hometown pastry shop. This makes both he and I very happy. Of course, I run the risk of hearing “pink cookie” on auto play, but that is okay. We get to have some pink cookies!
Local business plug: Davis Pastry in my hometown of Anna, IL is home of the world famous pink cookie. If you ever find yourself in Southern Illinois, you must stop in!
When we get home, we will talk with Brandon about what will be happening on Sunday. Super Bowl!!!
We have cooking to do, cleaning that must be done, and maybe some rearrangement of some furniture for optimum viewing.
As much as we prepare Brandon for changes, he still struggles with all the noise and smells and people. Before all the Super Bowl fun, Steve and Brandon will go to Cabela’s. His favorite store in the whole wide world. His happy place. His calm place. Cabelas is just for him.
Brandon likes football and he loves the Kansas City Cheeps. That’s his word for Chiefs for those who are just beginning to get to know Brandon. He knows when football is on there will be yelling and cheering. There will be lots of talking and laughing (provided the commercials are good).
We will let him know who is coming. He will smell all the food we make. He will tell me “no thank you beef” at least a hundred times regarding the Italian beef I am making. This is one of the reasons we bought the cheese hot dogs. He will love the pink cookies and chips that will be on the table. And he will smell everyone multiple times.
Thankfully, the weather app on my phone says the temperature will be 65 on Sunday in St. Louis. It will be warm enough for Brandon to take needed breaks outside. He can jump and swing to his heart’s content.
Sunday night will arrive and we will talk about school and getting back into the routine.
Hopefully, he will be go to school and let them know he had pink cookies. And saying “Cheeps won. Woo Hoo!”
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.
Welcome to my blog about our family’s life with autism. Before we get into too much else, I feel a bit of an introduction is needed.
Who am I? I have struggled with this question over the years. What is my contribution to this world? What am I suppose to do with the rest of my life? Who am I? I am a middle aged mother of three wonderful sons. I am a wife to my wonderful husband Steve. I am the keeper of everyone’s schedules. I am the chauffeur, I am the short order cook. I am the one who remembers when medicines get sent to school, I am the one who deals with doctor’s appointments, I am the one who schedules the IEPs and meetings with the case manager,. I am an autism mom. Our middle son, Brandon (who is now 20), is on the autism spectrum. His autism leans towards the severe end of the spectrum and he certainly keeps our life busy. More about him later. I want to continue introducing you to me and my family, because we do this together.
What makes me think I can write a blog about autism? The #1 reason….I live the life of an autism mom every single day. It is hard. It is exhausting both mentally and physically. It is sleepless nights and days filled with obsessions that he can’t figure out how to stop and behaviors he seems powerless over. It is constantly searching for balance for the whole family. But it is also a life I wouldn’t trade for anything else. I am proud to be mom to all my boys. They all have their unique personalities and gifts they bring to our family. Am I an expert on autism? No, well maybe. But I am an expert on my son and how he has changed my life.
Where did I come from? I was raised in a small town in deep south Illinois. I went to college in northern Illinois where I graduated with a degree in Psychology. My first job out of college was working with adults with disabilities. I did that for the next 22 years with three different agencies with three different philosophies. I met my husband, Steve, in 2004 (after my first husband and I divorced). Steve was a widower and a single parent to two boys, Brandon (5 y/o at that time) and J (2 y/o). I was a single mom to A (7 y/o). Long story short, we fell in love, got married in 2005 and I legally adopted Brandon and J and Steve adopted A. And then we started our life together.
When did life become so involved and confusing? Honestly, I think it was when my boys started growing up. They became teenagers…all of them. Brandon’s behaviors changed and morphed over the years and because he has limited verbal skills, it’s hard to know what’s what. And of course, my other sons changed and morphed also (and they are quite verbal). Our marriage went through changes, regression and growth. We’ve dealt with the death of a very loved grandfather, the illnesses of other grandparents, us choosing for me to stay home and take care of things here, and the constant changing of the family dynamics. And we have done it together. All of us.
How did I get here? Good question. The answer? With the help of my family, friends, and my ever supportive husband. I am a mom. I am also an autism mom. They go hand in hand in everything I do. And I feel that I have something real and honest to share. I am terrified of putting myself and my family out there for all to see. But, I want to. We always try to find the humor in our house. There are times when this is really challenging, because it can get very dark and the feelings of aloneness can come out. We have done things well. We have screwed up other things. We have been through highs and lows and I feel ready to share some snippets of our life.