Betsy's Back!

Today we got our favorite and beloved Shape Assistant back, Betsy! We've been without her for about 5 months. She was the Doodle's Autism specialist for almost a year and formed a great relationship with him. He's comfortable with her and so am I. I've mentioned this before but sometimes it's hard having strangers in your house every day, even when the intention is for the greater good. Betsy fits right in and feels like part of our family; not any kind of intrusion. I love that I can be myself when she's here.

So she has big plans for the Doodle. She's going to be working hard on getting him to communicate with pictures. Maybe that will help with some of his bad behavior that's based on his frustration for not being able to communicate effectively.

The Doodle has speech and OT through his special ed classroom, although pretty limited. I thinks it's just 20 minutes each a week. But honestly, that's better than nothing. He finally will be evaluated for Physical Therapy tomorrow at school. It was in his IEPthat he should receive a PT evaluation back in August. Never happened. Finally, at a meeting with his teach the first week of October, I reminded her. She claimed she didn't know about it. But how is that possible I said--you signed the IEP, you were in at the IEP meeting. So, I busted out the IEP and made her a copy while she was at my house. She was going to get right on it. Flash forward to Friday. Still no PT evaluation, which means not Physical Therapy at all.


Did I call the Teacher? You know I did.

To make a long story short. She forgot. She said she forgot because of the Doodle's bad behavior because her focus has been on his behavior instead of his physical therapy. I called Bull Shit on that one. I told her to take some responsibility for dropping the ball and to stop blaming it on the autistic child. No one knows how bad his behavior has been like I do. I can barely stand it. But it's only been a couple of weeks of bad...bad. He wasn't behaving like this back in August, the first time the ball got dropped. And he wasn't behaving like this the first week of October either, the second time the ball got dropped. We had some words. Mostly my words. I told her obviously the Doodle wasn't a priority in her "medically fragile" class room and that what I had worried about seemed to be a reality, that he wasn't fitting in there because of his autism and behavior.

I was guaranteed and confirmed it with the Principal that he would get the PT evaluation he was entitled to. I haven't decided if I should push for 2 1/2 months of back PT for him or not. I hate being "that mother". But. And I have a big butt, I will be that bitch of a mom and continue to fight for that little guy, because he can't and if I don't, who will?

Biting My Nose Off

My grandma used to use the saying, "Don't Bite Your Nose off to Spite Your Face". But sometimes too much is too much and you're left with a half a nose.

Doodle Bug has a Shape Aid who works him three days a week at the house. Mind you, this is not Betsy, our previous Shape Aid who worked with the Doodle for over a year prior to her getting laid off. Thanks budget cuts, but anyway, we've had several shape aids come through the house over the last few months because some were part time or some were summer time help or some were just temporary. Right now we have two, one nice lady that comes on Monday and Friday and another one that came on Tuesday, Wednesday and Thursday. Let me just say, I plan my entire day around the Doodle's preschool and Shape appointment schedules. I have to be home, I have to make other arrangements to pick up Jimmy from school, etc.

Since the first week of September we've had two new shape aids. One of them I love, the other, not so much. I never had a great feeling about her. She blurts out inappropriate comments, she was lazy and barely worked with the Doodle, she never stayed her allotted time and she called in sick. A lot.

She called in sick again today, maybe the tenth time in two months and I had just finally had IT. She sent me a text message that she wasn't coming. So I text messaged her back that she shouldn't come next week either, or ever again and to take care of herself. I immediately called her supervisor and told her that I was pretty much done. That it is easier for all concerned on the days she's not here.

I did the math in my head and figured the Doodle isn't losing out on that much...when she was here she didn't or couldn't engage him anyway, so there was a lot of just sitting and staring and she'd chase him a little and then he'd run to me and wave his best goodbye to her. She would take that goodbye wave and say, "Welp, I guess he's all done. I'm going to go now." and then she'd leave 1 or 1 1/2 hours early. So what is he really losing?

They are supposed to be giving us another Shape Aid in the meantime. I think. Or maybe we are just waiting for our Betsy to get hired back. Either way it will be better and easier.

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.