We had a really good weekend. Steve, Brandon, and I went to my great nephew’s soccer game Saturday morning. Then it was out to lunch with my niece and her boys. After lunch, we all went to my great niece’s softball game where we spent time with more family. It was a good day. By the time we got to the softball game, Brandon was ready to go home, but was okay with just sitting in the truck listening to his iPod (he was always in our sight).
When we got home, my niece texted me to see if Brandon was exhausted. I let her know that he was NOT exhausted at all and was perserverating on Mario Kart. I also let her know that I was not letting it bother me because it was worth spending time with family. It took awhile to get Brandon calm enough to go to bed, but when he did, he slept like a rock until 9:30am.
Yesterday was Survivor day with my friend, Rick. We get together every couple of weeks to catch up on the latest episodes. Steve did some stuff around the house and Brandon went to the Dinosaur Center (Science Center) and out to eat at Taco Bell with his support worker. We watched the Cardinals win and folded some laundry.
And today is Monday!! I love Mondays. Mondays mean quiet time for me and a chance to pick up all the stuff everyone leaves lying around my house. On Mondays, I get to drink an entire cup of coffee before it gets cold. I get to watch, uninterrupted, whatever Real Housewives episode I have recorded (the Real Housewives are one of my guilty pleasures….don’t judge me). And Brandon gets to go to school.
I told the bus driver this morning that I love seeing the bus pull up on Mondays. She laughed and said she hears that a lot. But what I love more is seeing Brandon run to the bus. Every morning. It’s not a walk, it’s not a slow jog, it is a full on run. What that tells me is that my child loves to go to school.
The routine and structure of school give Brandon balance. The routine is the same. He goes to his volunteer sight twice a week. He sees the music therapist on Wednesday. He sees his friends that he is comfortable being around.
Our weekends are not nearly as structured as Brandon’s day at school. I prepared him for our Saturday of sports. But I know that since he had never been to these places, that it may be a bit more challenging for him. There was lots of area for him to jump at the soccer game. He also seemed fascinated with the porta-potties. I am so so glad Steve was with us!!! We ate at lunch at Culvers with my niece and her two boys and Brandon has never eaten there. He did fine with his cheeseburger and fries and certainly let us know that he does not want to dip his fries in cheese sauce. The tables around us know that now, too.
And today is Monday. I plan for the week ahead. I check everyone’s schedules so I know who will be here for dinner. What am I making for dinner? When is Brandon’s support worker coming? When can they go to the trampoline park? What night can I go craft with my friend, Jessica? Does Steve have any plans? I feel organized on Mondays.
My goal for today – call Brandon’s case manager. The last time I spoke with her, I had some questions I need answers to. And I haven’t heard from her since that conversation, which was two weeks ago. Questions about what does Brandon do when he is finished with high school. The case manager told me that I could not talk with agencies that provide day program services until the Medicaid Waiver funding is approved. That is not the case. I can talk to whoever I want, whenever I want, about my child. And I will be doing that later this week when I tour a couple of agencies with some of the other parents from Brandon’s school.
I worry about Mondays in the future. What if the funding isn’t approved? What if, when school is finished, we don’t have something lined up for him? I want Brandon to know that on Mondays, he will be doing something with people other than family. I want to be able to assure him that he will have a life outside of our home. That is what I want for my son.
Now, I will have another cup of coffee (maybe 3 cups) and make that call.