Emotional advocacy

A post from a week (or two?) ago, that I just now finished...

Olivia and Jacob finished day 12 of the school year on Friday.  Jake seems to be doing well for the most part, aside from some very middle-schoolish drawings and words written in his planner and a couple of papers he can't find to turn in... God, give me strength to get through the teenage years.  Age eleven has enough pre-teen mysteries to last me until he graduates college.  (Which, by the way, he WILL do, regardless of his casual conversations with me about how he really doesn't need to go to college. If I have to bribe him with a motorcycle cold hard cash, I will. A mom's gotta do what a mom's gotta do.)

Olivia is enjoying kindergarten with Mrs. R.  There is a little boy with Down's Syndrome in her class who says hello to her every day.  Usually he says hello to her multiple times.  "Hello, Olivia.  Hello, Olivia.  Hello, Olivia."  I guess he's expecting a response.  A fair expectation, but my girl doesn't play along to appease him.  So, I've tried to answer on her behalf.  "Good morning, S."  No response.  Ever.  And I've tried many times.  Okey-dokey, then.

One afternoon, S was turning O's wheelchair around (he tends to be the class assistant, I've noticed) and I leaned down to Olivia and said, "Hi, sweet girl!"  He said, with a serious look on his face, "That's OLIVIA."  Yes, sir.  Got it.

There is a total of six children in the class.  One walks with a walker, but Olivia is the only one in the school with a wheelchair.

She has had speech a couple of times and PT once (I think).  I met the PT and was very impressed with his knowledge about the brain and muscle connection.  He shared lots of info with me and listened as I talked about O's progress (and regression) over the years.  I'm super excited to have him and Jeanine as our PTs.  From everyone I've talked to, the speech therapist is amazing.  Looking forward to meeting her and having her help us brainstorm communication strategies for home.

The hardest part for me so far has been trying to get into a routine.  For the first 8 days (minus a day when Brian picked up O), I dropped off Jake at his school, then headed to O's school, unloaded the wheelchair, got her settled in the room, and finally headed to work around 8:30.  Then, because we had yet to work out plans for after-school care, I left work at 2:45 to pick up O (with wheelchair), headed to get Jake (in school traffic since it was right when his school let out), parked, got the Olivia and the wheelchair back out, headed in to after-school and signed out Jake, then headed back to the car and loaded up one more time.  Oh, and then there is the lovely 30 minute commute from the house tacked on to the start and end of every day.  Blah.

We. Have. To. Get. This. House. Sold.

Luckily, I can do work from home in the evenings since I can sit in front of the laptop on my couch and accomplish the same things I can do in front of the laptop at my desk.  But, I'm still ready for a more fine-tuned routine.

After-school care.  Most children who go to the after-school program spend that time eating snack, playing in the gym with basketballs or in play centers, or playing outside.  This is what Jacob does, anyway, with the dozens of other kids there.

Thinking of Olivia in that setting gets my stomach churning.  So, before we even made the final decision to place her at this school, I spoke with the county director of the after-school program.  He was very nice and said he would make it work.  I told him I would check to see if our CAP-C aide could come to after-school to be with Olivia and serve as her caretaker (instead of the two counselors who are in charge of the rest of the students).  He said that would be a great option and we agreed that I would get back with him after I checked with our CAP-C case manager.

Unfortunately, our case manager said that care could only be provided in-home.  Crap.  Now what?

A couple of days later (maybe? The days have blurred together...) I researched the CAP-C waiver online and found the parent handbook that clearly states care can be provided in many places, including in an after-school or daycare setting.  So, after talking with our case manager again, we set a plan to have our current CAP-C aide come to the school every afternoon from 3-5:30.

The more I thought about Olivia in the gym, the more I was convinced that there must be a better option.  So, I asked Mrs. R if Olivia and our CAP aide could stay in the classroom in the afternoons.  She agreed this would be a more appropriate option for O, and Tuesday, our CAP aide and Olivia hung out in the classroom, playing with toys and listening to music.

However... once the principal found out our altered after-school plan, he shared his concerns.  He was very cordial, and it was obvious he wanted to make sure he and the school/district were covered in the event something happened.  He was also concerned that other parents would ask for and expect that their children could stay in their own classrooms instead of heading to the gym with the large group.

I get the principal's concerns.  Dealing with liability issues and making sure you are fair to everyone are probably at the forefront of a lot of decisions being made by principals.  But... fair and equal are not the same thing.  My child doesn't need equal services.  She needs fair services.

And my child isn't like any other child at her school.  She is severely autistic, wheelchair bound, not toilet-trained, and had a government-supplied personal aide through CAP-C.  Show me another kiddo like that and I'll be glad to help them advocate to allow that child to stay in the classroom for after-school care.

Brian and I have talked about how to best advocate for Olivia and we decided that since I work in the district, he would handle most of the details for situations like this. We both felt like that would be better received so that it wouldn’t appear as if I was trying to get preferential treatment for my child simply because I work in HPS. We really have made a strong effort to look at all perspectives in any situation involving our daughter so that we can advocate for her with fair expectations.

Anyway, Wednesday came and went without any new answers, so I had Brian pick her up early and cancel our CAP aide (Miss L) for the day.  Brian had put in a few phone calls during the day, and I had researched all kinds of policies and laws trying to find info about the possibility of having Olivia cared for within the classroom after hours by a CAP aide.  After not reaching our EC director, he even called the superintendent of our home county to see if he had ever had a similar situation or if he knew the laws surrounding such a situation. Brian knows him because they are on the Smart Start board together.

By Thursday afternoon, our EC director and superintendent had given approval for our CAP aide to stay in the classroom with Olivia after school.  YAY!!  It really seems like the best environment for my girl and I'm excited she'll be in a room she knows.

However, the EC director approached me Friday morning and was concerned that we approached the Superintendent of another county when I work right down the hall from her...

I've been so emotional this week.  Overly-emotional.  So, I've been on the verge of a big fat cry-fest.  When she walked in my office and started talking, I lost it.  All the tears came.  I felt like an idiot, but I couldn't hold them back any longer.

I totally understand her perception that we were going around her, behind her back, instead of approaching her first.  But, that was not how it happened, nor was it our intention.  We have just tried to rely on all of our resources to help make the best decisions for Olivia, and we were desperate to quickly find a solution to this issue.  And no matter how hard I've tried to make sure everybody is happy and we don't come across as "defensive", I seem to be tripping over myself in the process.

Communication helps so much, and after talking (through sobs) with the EC director, and then talking with the principal, I think I was able to clarify our intentions- helping our daughter, keeping her safe, and doing what's best for her.  No matter what.

We have finally solved the after-school issue.  I hope we are all on the same page now...  Olivia is staying after school with her CAP aide until around 5ish each day.  She is in the classroom, which is what I had wanted for her.  We lock the door and exit through an adjoining door that can lock behind us when we leave.

I'm realizing that I fit in the "emotional advocate" category, apparently.  It's who I am.  I hate confrontation.  I hate making others upset.  I want people to know that I am a good person.  But, I'm emotional.  I cry.  It's who I am.

Even double Zoloft dosage won't change that.