My doc suggested I journal about our challenges with Asperger's and I told her I have a blog. Well... I had a blog... It's been so long since the last time I wrote. I guess that might tell you how busy we've been. We are now well into the summer and I agree with my doc. I need to continue to blog so I know where we have been and what we have gotten through.
I realized today that I need help. Now, I've said this before on a number of occasions and believe me, I've tried to find help. But it takes a lot of energy to find the help, organize the help, teach the help, converse and reflect with the help, and update the help on all the newest nuances. I'm sure I need help in many other ways ;) but a support worker is what I need. Problem? ...$$$ They cost $$$. I have a fantastic babysitter who is now a primary/junior teacher without a teaching job, and thankfully she works shifts at a grocery store so I can often schedule her in to help out. But that's just for a night out for Jamie and I. I need help teaching! I need help constantly teaching the social skills and the safety skills and the body awareness, and and and. I am teaching for all of her waking hours and it's exhausting.
Funny. I just called (I'm sure for the second time) Catulpa, knowing that we don't qualify, but checking just in case, in regard to respite support. It's the summer and this is when I "have time". That's a funny statement. I don't have time. The only time I have time is when both of my kids are somewhere other than with me and that means somewhere other than our home too.
Anyway, back to the recap of January to present. Rewind!
I went back to work part time in February and I still felt like I worked a full time job. It was great to be able to get Sienna on the bus because that's what she needed. She needed a constant and that was me. Mornings continued to be challenging. Some days I only had to be in the room while she dressed herself and some days I had to dress her. The morning routine from a wakeup start to a get-in-the-car finish took a minimum of one hour. And that was just getting her dressed, peed, teeth brushed, fed, hair brushed and coat/boots on. That did not include getting myself ready. That had to be done before she was up and I wasn't ironing clothes for myself believe me! Toileting was terrible and had been falling apart since before Christmas. It finally got better somehow around the end of May. I had gotten so exhausted that I finally told the Principal that I needed to go back to the same support we had back in November. One EA, same bathroom, same picture, same times, same words used. It started to improve within a few weeks and thankfully we kept it consistent until the end of the school year. Evening meltdowns were frequent until probably May-ish as well. I'm not sure what contributed to things improving in most areas around May but I'm thinking it was a combination of (finally!) getting used to the routine and people involved in her day and what was expected of her as well as less clothing to put on and (oh yeah!!) her equipment finally got to the school and was being used. That was it! She got a few items that her teacher began incorporating into her school day and I saw an immediate improvement in sleep, eating, focus, concentration, dressing, toileting, and transitioning. Simple things... a 4lb weighted vest used 3 times a day, a 2lb weighted ball to lift up and down, and her teacher offered quiet hallway activities to all the students which is what Sienna always chose as opposed to a group classroom activity involving movement/noise/cooperation.
Now here we are... I was able to break free of some night time routines and start playing ball again. It took some advanced preparation for Sienna but she was ready to have this change in her routine. She now deals with it very well and we don't have to give her a day's notice. I was concerned about summer and rightfully so. Things are going well but it can be tiring and I really want some time with both of my kids separately. Now that they've been together quite a lot for about 4 weeks, they no longer can handle being together for much more than a few minutes - unless they're watching tv. Watching tv is okay for my son because he is very social and can go off and play on his own for several minutes at a time even during a show. For Sienna, she would watch tv all day if I let her. But that wouldn't be good for anyone... No physical stimulation, no sensory stimulation, no interactions. On the other hand, if she's trying to play with her brother I have to constantly coach and monitor it because she can be very unreasonable if he doesn't do what she predicts or wants him to do. Over the last few weeks it has started to become physical on Sienna's part mostly. She lashes out... slaps, hits, kicks, squeezes, pinches. And it's aggressive and becoming progressively more so. Hence, my need for some help. Ironically, I received notice in the mail today saying that we qualify for Special Services at Home which provides funding for respite support (which I applied to last October by the way). We are on the wait list. Surprise!!
I'm sure people just think, well why doesn't she just get a babysitter and get out of the house? But my point is that I need someone who can teach Sienna. Because if I get "just a babysitter" who does not understand that my daughter understands and communicates differently than what we see as the norm, then I am just setting myself up for a challenging return to my home. If the sitter doesn't follow the routine, I pay for it and Sienna doesn't benefit in any way. Here's a great example of how much she needs the routine... Every single day, when she gets up, I have immediately had her get dressed, brush her teeth, and go to the washroom. I get her breakfast before she is allowed to watch tv. This was the recommendation by the Autism Consultation (a very smart lady). Well, today I didn't do that. I was tired. I wanted to drink my coffee in peace and quiet, and it's Saturday. She ended up watching tv in our bed with Jamie for an hour, got through the rest of the morning stuff fairly well but oh Lordy! Was she a disaster today! She fought with her brother way more than usual, would not accept his pretend play with her in any way (he kept doing everything wrong in her eyes - even though the poor guy was trying so hard to make her happy), and transitions from one thing to the next was particularly hard. Bottom line, there were lots of tears and screaming. Not a fun day for anyone in our house... except for our trip to the Scales Nature Park where Sienna got to hold a bunch of snakes (which she absolutely loves).
I did put Sienna in camp last week. We had a free support worker through Parks and Rec for the week. It was good. Not horrible. Not awesome. But good. She seems to have had fun. I made up a visual schedule based on the day's activities which we reviewed several times. I sent it with her and explained it to her support person, as well as her weighted vest, her noise-canceling headphones and treats for BMs. I wish she could verbalize how she felt and what she did and how her social play went and was she stressed and all that. The evenings got progressively more challenging as the week went on but there's one thing we do know and that's that social interactions cause her stress. So she was placed in a social situation every day for the whole week and that's tough for her. She did have a little incident on the playground which the support worker couldn't figure out what happened and Sienna couldn't explain it. But Sienna hit a boy and he pushed her back. Doesn't really surprise me. When I asked Sienna about it, she just said they were playing "bad guys". So I totally know what happened... Sienna was growling at the boy and pretending to be "bad" and he did the same back to her and she didn't like it. It happens in my house all the time! HAHA! So, we just have to let it go and hope to have continued support with the interactions she has with other children.
Sienna thrives when she gets to spend one-on-one time with an adult. And she loves and adores little babies. Almost too much. She gets right into their personal space and wants to touch their faces and hold their hands and sometimes knocks them over (happened at McDonald's). But not maliciously. We are going to continue to work on same age social play and interactions. She will avoid it as much as she can because it's stressful but we have to encourage it because it's what she will face throughout her school years. So in August, I'm looking for another camp. This time the support worker won't be free but whatever. And I'm sending her to her old pre-school for a day here and there as well. They know her and she knows them and she understands the routine. Not to mention, she'll go on days when Kypton will go too so it will be more comfortable for her. They'll be in the same room so hopefully the teachers won't have to break up any fights... :)
Until next time. Hopefully not so long...
