My own special needs.

My department at work was just assigned a new director to overlook my team. My prior boss had been with me for over 10 years. She was there when I found out I was pregnant, she was there when my son was hospitalized, she was there when we received our AU diagnosis, and she’s been part of our autism journey from the start. New boss means change and a different style of leadership.

He invited us to a virtual “Get to know us” meeting . He said he wanted to know how he can assist us.

While we were introducing ourselves, the first thing I mentioned was my son and his special needs. The reason for this is that my son’s diagnosis isn’t just his, this is our diagnosis. His special needs affect all of us. And now because of this pandemic, working from home while my son takes virtual classes, his special needs affect my job on a daily basis.

I told the new director that I will try to be in meetings, I will try to make arrangements by making sure my daughter is here or my parents. But I also let him know that even with enough notice, my son has his own schedule and follows his own time.

Last week I received an invite for an emergency meeting. There was some issues going on and a lot of managers were on the call. The first thing I had to say was because this was an improptu meeting, I did not have enough notice to have somebody assist me at home. In other words, my son would be on the call too. My son was in the background singing very loud. I would leave to go o another room but he’d follow me. One time during the call, I sat down on the floor with my laptop. The monkey ran over to me and started wrestling with me. He was laughing so loud that I wasn’t able to participate in the call. 😂

He has his own schedule.

I am very blessed that my coworkers, and the company that I work for, are very understanding . This pandemic has created new working issues that I’ve never had before and they understand this.

I let the new director know that there are nights that my son will not sleep and sometimes I’m beyond exhausted. And on those days I simply cannot function. He was very understanding and told me that whatever he can do to help me to simply let him know.

The monkey has been touching his teeth for a while now. I’ve been trying to see what the issue is but he doesn’t let me see inside his mouth. And the worst part is that his gums have been bleeding for about a month now. I hesitantly decided to make the dentist appointment for today at 6:30 a.m. when there will be no other kids. I chose this time because typically, dentist appointments turn out really bad. On previous occasions, we have needed to go to the hospital and sedate him in order for them to perform a thorough evaluation.

I’ve been thinking about this dentist visit so much that I can’t sleep. My stomach is in knots and my anxiety is over the roof. The monkey is older, stronger. We will need to have many people hold him down.

These parts of our journey are very difficult to bear.

I know that tomorrow I will not be able to function as efficiently at work. Sleep deprivation always causes this.

And this is how the new management will be introduced to our diagnosis, our special needs, our autism journey.

Here’s hoping my son will be okay. That all of us will be okay. 🙏♥️


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