It’s part of my son’s routine to come to my house every Sunday. Every Sunday without fail. It’s funny because when Thomas moved into the group home from the residential school I had all these plans in my head of how much time we would spend together now that he lived 10 minutes from our house. That we would go to the mall on a week night after having him over for dinner, attending church together…nope. In typical fashion when it comes to my son, nothing goes the way Ive had it planned. I can honestly say any plans I have ever had for my son have not gone the way I had pictured. That doesn’t mean life went in a horrible direction; just not how I had pictured and planned out in my mind.
I was so happy to take Thomas to church. We sat together and he started talking during the worship singing, ok no big deal. We sat down and the Pastor began preaching. Thomas started rubbing his nose, going to pick his nose. I told him to stop. Thomas then says loudly “I need a tissue Mom! I need a tissue!” Of course I’m not that mom who carries tissues in her bag. God must have felt sorry for me and the woman sitting behind us tapped my shoulder and said,”Here, I have tissues.” I wanted to hug her. After blowing his nose Thomas proceeded to talk through the entire service and he didn’t use a church voice. So there went that scenario.
As far as seeing Thomas after work and his program, there doesn’t seem to be enough time. We both arrive home around 3:30, I have to make dinner, clean up and prepare for the next day. So we are left with Sunday’s. On Thomas’ terms.
He’s picked up around 1pm and brought here. Thomas makes sure he takes his 3pm meds by consistently reminding me that he needs to take them. We usually eat dinner around 4:30-5:00, dessert follows after cleaning up. Thomas then proceeds to remind me about his 7pm meds. I give the 7pm meds around 6 and after that he’s ready to go and you had better be ready too. He knows the next day is Monday and that he has program to attend.
I remember when Thomas was very young, he was wearing a moulding helmet; his head was misshaped from not turning it to the other side. He only turned his head to the right. When I brought this up to his pediatrician at the time I was pretty much blown off. Turns out Thomas had a condition called Torticollis. He was also delayed in meeting milestones so we had Early Intervention services and physical therapy was one of them. I was questioning whether Thomas needed to continue physical therapy, what did I know? So our pediatrician sent us to some specialist. I remember the man had no idea why we were there (so much for professionals communicating). I remember his assistant told me to continue the PT in case he needed it for school and needed special Ed services. Thomas was 15 months old. I cried and cried. And I honestly had a premonition that my son wouldn’t be able to read. I was right. Thomas does not know how to read. I also remember leaving that building holding him so tightly. He was mine and I never wanted to let him go. I never imagined how our and his life would take such a tumultuous turn as the years progressed.