Maybe I'm Autistic

Having an autistic child has been a challenge and with that challenge comes new experiences I had never prepared for. As grateful as I am for all of the Doodle's therapies and autism programs he has been blessed to receive, it is hard keeping up with the intense daily schedule and the many different people involved on his constantly changing TEAM and making their schedules fit with ours.

Yup. I think I might be complaining again. I went a whole day without complaining but now it's back.

The Doodle has been in the Shape program and receives services from our Regional Center where they send an assistant to work with him for two hours a day and other types of therapists. They set goals with us and they come to the house and do a lot of floor time and play-based therapy with the Doodle. We were blessed to have been assigned a wonderful lady, Betsy, who loved and worked with the Doodle every day for almost a year. Once the school year was over we lost her, although we still keep in touch.

In Betsy's place, they sent two other ladies to split up the week but it wasn't the same. Sure they showed up with bins of things to do, which the Doodle loves. If you ever come to the door and the Doodle answers he will be most certainly looking to see if you brought a bin for him. He only gets this in home service until he turns 3 so the summer time has been quite challenging because we no longer have the other two ladies either. They left. So we had some confusion and had a couple of weeks skipped and then they just sent another one out. While this one is nice enough, she barely speaks any English. I don't think the Doodle really cares much, he thinks Dora the Explorer is here to play with him. And if his first word is going to be Spanish--I'll happily take it. I'm all about diversity.

The Doodle also has a speech therapist that comes weekly, although we don't have a very good track record with her actually showing up. He needs a speech therapist more than anything and it's what he gets the least of. His physical and occupational therapists are outside of the home, once a week for an hour each--although they have been combining his appointments and doing them together, so he's getting a little jipped there too. I'm supposed to be his advocate yet I feel guilty when I complain about his "free" services.

It's hard for me, because you spend so much time getting a good team assembled and maybe my expectations have been set too high--but we haven't had much consistency since Betsy left. Betsy was here even on the days the Doodle felt crappy and had seizures.

In addition to keeping all of these appointments in between and during seizure activity, doctor appointments and naps--it's hard counting on these people, getting to know them, getting to trust them, letting them into your home and life and then they're gone.

It takes a lot of energy and social skills to get to know people. Lately, I feel like these people (pre-Betsy) that have been coming, just want to get in and get out. They know they are not going to be here for any length of time, so it's felt very disconnected. I'm probably going to get shot for saying this or want to eat my words but it's hard having a revolving door of people coming through here. Since the Doodle has been in the program we have had 11 different people on his team in 1 1/2 years. With each new person, comes an orientation process. It's hard to orient someone who is only going to be here five times. One of the new last assistants we had told me the Doodle was saying words. I don't think she was told or knew he couldn't speak. Then she left me scratching my head when she asked me if I thought he was autistic. OK. What did she think she was here for exactly?

To add more people into the mix, we have added a Nurse. We are going through an in-home nursing agency for his nurse for 4 hours a day, and we have come to like our Nurse very much. She is a great fit and we are very comfortable with her. You have to be comfortable with someone who is spending 80% of their time in your master bedroom...But, she just went on vacation. For three weeks. Now we are getting sent 5 different nurses to replace her shifts. I have no idea who these people are or how they are going to fit with our family. They aren't here long enough to really find out. Everybody brings their own personalities and ideas with them. Then I think as long as they are good with the Doodle, it doesn't matter and it will be OK.

One big and general trait of most people with autism is that they need consistency and like familiarity. They are very into structure, patterns and schedules. That includes, for the Doodle, meeting and working with so many different and new people.

My social skills are a little rusty and lacking--which brings me to the title of my post. For the most part, I haven't been wanting to be around people lately. I haven't felt like socializing. I don't like meeting new people or expending the extra effort and energy it takes to get to know people. I've suddenly become a bummer at parties. Until yesterday when I met my new friend, I was Debbie Downer. She was the first new person I was excited about meeting.

Maybe I'm Autistic.

1 comment:

  1. Everything you say, I can totally relate with. I could have written that. Hang in there sister friend. You are not in this alone. I know it's hard. We take one day at a time. By the way, I'm glad you added that little part at the end. I got a little nervous...!