Ok, so here goes…. we had our first real celebration gathering since the loss of our son Alfred. When you get a spoonful and taste of what bitter sweet is.. well that’s my reality. I love being the hostess, always have. I love welcoming people into my home. I loved being able to have something so special to celebrate…. it’s the missing piece of my heart that I hate. It’s an unexplainable feeling of emptiness, that no amount of happiness can fill. I still enjoy being around people,especially those who love me. I enjoy watching my family laugh and smile together… that’s how memories are made, and we will continue to make them. It’s the knowing Alfred is not part of them that’s the struggle. This is when I choose my time out moments.
Have you ever read a book and just instantly made a connection to the main character? The first 3-4 books I read about Aspergers where like that for me. Here where stories and list of common “traits” that described my son. Seriously some of the things I read , I could of written myself! All things normal to me, but where one after another in book after book about Aspergers. I was scared, I felt alone … I knew I needed to change things for my son. The first thing that needed to change was me. I knew I needed to stop thinking of what I wanted and listen and find what Al needed.
Aspergers and Alfred made details and structure when it came to following a school schedule very important. Having a impromptu substitute could make for an interesting day. If recess was not at the scheduled time , the chances of an Alfred notification where highly likely. Teachers get sick, it happens. I just asked if you knew ahead of any substitute days in advance to fill us in. It really made a huge difference. I found this to be true with even getting ready to leave the house. I started with 30 min notifications to Al that we would need to leave or be changing activities. I did this from an early age on with him. I have continued to do this with all my children. After taking a step back and thinking about it. Would you want to have to abruptly stop what you were doing , have to run and put your shoes on, head out the door quickly and not know why? I know I wouldn’t be happy about it.. Count downs became our normal. “In about a half hour we will be leaving to go ….” then again in 15 min , then 5 …. it really made a difference .
Adjusting to change wasn’t always easy for Al. It became easier when he knew about it in advance. I did my best to notify him when I could, and walk him through the times when I couldn’t.
We as a family, me as a mother are never going to fully adjust to Alfred being gone. I know this… but giving myself my own “countdown ” reflection time is helpful. Whether it be to laugh, cry or even just talk to Al like he was sitting right next to me. I just know to allow myself the time.
“Go as long as you can, then take another step.”💙