Could I have a word please?

I'm beginning to feel like I never write a post unless I've got some big advocacy subject to talk about, but lately we've been having some regular kid stuff complicated by disability.  Alexa's growing and learning this year in many wonderful ways, and participating more in her general ed classroom. 
Her understanding of the world and her need to communicate her wants and needs to us have suddenly raced ahead of the vocabulary we have on her talker.  For over a month now she's been having major meltdowns on a daily basis because either A. I don't understand what she wants to do, where she wants to go, what's she wants on her talker or B. I understand but the answer is no (we will not be going to the bounce house every day etc..)  It's like playing pictionary/charades while Alexa is crying and yelling at you...sometimes for an hour or more.
Today she had her first major meltdown at school-I went to find her for library, and she was in speech therapy crying and trying to tell the SLP and the Educational Assistant something that she wanted to be put in her iPad, but none of us understood her signing, and she couldn't spell it.  We eventually got Bob the Builder, a crane, a digger, Thomas the Tank Engine and a couple of other things in there, but she was still crying and trying to say more when we made her go to lunch and I left.  It's really difficult to watch how hard she has to fight for every word she wants to say, but it is good to see her so sure that she can get her point across and to fight so hard for it.  It would be so much worse if she'd given up..
Unfortunately it's pretty hard on me, I don't deal well with her screaming for hours on end, and she always focuses it on me because I'm the one person she knows might understand her.  Unfortunately I can't figure out how to help her accept disappointments.  I've tried everything I can think of, I try to console her for one loss with something else fun, but she holds on so tight to what she wants that sometimes there just isn't anything equally desirable available to divert her from it.   So she screams and screams and signs vehemently and my stomach knots up tighter and tighter.  I can deal with it when she's just mad that she can't have what she wants, that's a learning process that all humans have to go through, but I hate it that I don't know what word she wants sometimes, a kid shouldn't have to fight so hard for words..

Person Centered Planning Facilitator Training

This week I had the fantastic good fortune to attend Person Centered Planning Facilitator Training taught by Debra McClean who works at OTAC (Oregon Technical Assistance Corporation) in Salem.  For those of you who haven't heard of PCP, this is her description: "A process that assists an individual to plan for the future.  It is most effective when facilitated by someone who can assist the individual and those close to him/her to gain a clearer understanding of the individual and imagine creative future possibilities.    There are several recipes for this process, but all result in an Action Plan based upon the individual's gifts and desires for the future."
We learned the process for a day and a half, watched Debra facilitate a plan, practiced a few times with imaginary individuals, and then on Thursday, in groups of 2-3, facilitated a plan for a real person.  As you might guess, this process is wonderful because it is all about seeing what a person can do and does well, and then creating an action plan.
I will be doing one more observed PCP meeting, and then I will pay back the OCDD (Oregon Council on Developmental Disabilities) who paid for my training by doing at least 3 PCPs per year for members of my community free of charge.  Because this is part of OCDD's commitment to supporting families, these plans are for individuals under the age of 21.  Anyone who has a family member experiencing disability in that age group and needs a plan is encouraged to contact me to request one.  I love this process, so I am very excited about doing these.  Anyone who specifically could participate in a meeting on November 29 or December 14 (or maybe 15?) and who would be willing to be my apprenticeship family would be greatly appreciated!
Meanwhile, Alexa is learning to create new sentences requesting things she wants using her reading folders from school.  This takes a lot of creativity, particularly when she needs to say something that isn't available, and she only does it after she's cried and yelled at us for 20 minutes or more and we still haven't guessed what she wants.  Today after gymnastics she wanted to go somewhere, and David thought she wanted to go to Panera, I thought she wanted to go swimming.  I thought she was just mad because she didn't want to eat lunch first.  She wouldn't come in the house, and was screaming and crying in our parking lot for about 15 minutes, finally it started raining, so David carried her inside, and I got her talker and created a visual schedule saying lunch, get ready, go swimming.  Finally she went to her talker program and wrote "children house".  Then I remembered that we went to the Wacky Indoor Bounce the other day and realized that's where she wanted to go.  She was so relieved that I finally got it.  While it's hard for us to listen to the screaming, and sometimes she's just mad that she isn't getting her way, I'm so excited about her using her talker this way.  Thursday she created a 5 word sentence asking for me to put her "Where's my water" game back on her talker.  It must be so frustrating to be playing a guessing game whenever you want something that your parents can't figure out and that isn't pre-programmed into her talker.  She's also learning to type out words, so  I have such big hopes for the future.

I am calm

I'm feeling chatty today, and I've just got to share with someone...so let me tell you how things are around here.  Alexa is growing, blooming, blossoming, learning, and just being generally awesome this summer.  There is a caveat however, she is also stubborn as a rock sometimes, and I do mean a rock, somehow she temporarily increases the gravitational field underneath her when she doesn't want to move. 

She started summer camps at Kidspirit this week; she goes in the afternoons from 1-4:30, and Monday and Tuesday were very hard in terms of getting Alexa dressed and moving.  The difficulty of summer is the very flexibility of our schedule, and I fell victim to the allure of not having a specific place to be the whole morning.  Alexa has Where's my Water on her iPad, and she plays that game for hours, and when I start saying "Alexa, it's time to get dressed," she's too intent on playing her game to listen, and furthermore, she senses that I haven't hit the point yet where I'm going to force her to do it, so she ignores me.  I get distracted by whatever it is I'm doing on my computer, and so about every 5 minutes for the next hour I remind her that she needs to get dressed so she can eat breakfast.  After an hour or so of this, I begin to be frustrated and take away the iPad and try to make her move to her room to get dressed.  She gets angry that I took her game away and does her gravity trick, and the real battle begins.  There are time outs, and yelling and arms crossed and heels dug in, and she is finally dressed and eating breakfast about 3 hours after we started.  By the second day of this, I was nearly hysterical, there are at least 5 more weeks of summer, and these are camp days when I have 3.5 hours to myself and if I can't manage this, how will I manage when David goes out of town for a week in August?   After I calm down enough to think clearly, I realize that I can in fact change this.  (Remember Elven's book?  If you haven't read it, you should.  I have no idea how to write his last name properly so forgive me Mr. E)  I remember Elven's suggestion, that blaming the problem on the other person takes away my power to change it.  During the school year we have the same stubbornness about getting dressed, but it's compressed into about 45 minutes because the bus comes at 7:30 so I need to stick to a schedule so Alexa will know what to expect.  I created some schedules in First, Then (another great app-simple visual scheduling) and now, she can play with the talker until 8 am, and then the schedule tells her that it is time to get dressed, then eat breakfast, then get in the van etc.  Some good advice from M, to try not to take it all so personally, and a lot of thought about how Alexa's mood and attitude mirror my own led me to my big revelation this morning.  I need to make it clear to her that I am not the one she is hurting by refusal to get dressed, it's her own time to play that she is using up.  And I need to fully believe that myself.   It's not about Alexa or me "winning" the confrontation, it's her time to play that she's wasting.  This morning I was calm and matter of fact about it.  I pretended that I was bored by the whole thing, having to reset the timer every time she got out of the time out seat.  She was studying my face so intently, as though trying to figure out where red-faced yelling Mom was.

I'm sure that I will forget this again in the future, but today I'm calm.  I'm hoping that by writing it all down I will remember it for a longer period of time. 

The flip side of Alexa's stubbornness is her determination.  She has been practicing kicking the ball all summer, and she is getting so much better, she can now run up to the ball and kick it without stopping, and even has some accuracy.  She's also been practicing dancing, and has been having an outbreak of what we call SAS, sudden arabesque syndrome, she kicked several people in the shins at Da Vinci Days by doing this while waiting in line.  The thing is, she has been practicing her arabesque for a few years now, something that's very challenging for her because of the balance and strength and muscle control it requires.  I'm very proud of her for it.  Many kids would have given up on it long ago, but not Alexa, so I try to remember, the same thing that can turn getting dressed into a three hour battle is what allows her to dance.

Our first parade

Alexa and I participated in the local "anyone can join" parade today.  There was no way I was going to be able to stand around while waiting for the parade to begin, and then walk in it too, so I decided to bring my scooter.  We needed to test the battery before taking it to Disneyland next week anyway since it's been sitting in the storage unit for a few years now. 
We had so much fun.  This is one of the days that I love living in a small town.  Within minutes of arrival, we saw someone we knew.   After talking with them for a few minutes, Alexa saw a little digger that was pulling a trailer in the parade, so we went over to investigate.  After I mentioned that Alexa loved diggers, the owner turned it off and helped her to sit in the seat.  After about 3 seconds she got down to go investigate the digger bucket part (I don't know the correct name for this kind, it was the kind that's as wide as the whole vehicle, and flat on the bottom, maybe it's a loader?)  anyway, she was signing digger, digger and jumping up and down gleefully.  Even when she's not using the talker she communicates very effectively. 
By the time the parade started, we had seen at least 15 people we knew.  We were loaned some shiny bead necklaces for Alexa, because we hadn't planned ahead for this and finally we started walking.  It was quite the exercise in working together, there were a bunch of kids on bikes and scooters, and it was very challenging not to run into anyone with the scooter while trying to see where I was going through Alexa's head.  What was really fun was seeing all the people who turned out to watch this motley collection of people walk through the streets of town.  I felt very much a part of a community, and I felt lucky that this is one of the ways in which Alexa is exceptional.  She loves people, and they love her.  I know that it's possible we will have to leave Corvallis someday when David gets a job somewhere else, and I hope that I remember how important it is to get out there and participate in the community that we live in, even when it seems like work. 
This experience of belonging in our community made me think about when I heard David Pitonyak speak at PIP in April.  You can read about him here.  The theme of his talk at PIP was that people are hardwired to belong, literally.  The human brain experiences and responds to rejection in exactly the same way it responds to a punch in the face.  This talk further crystallized my already growing realization that what Alexa needs to learn in school is not how to be completely independent, but how to give and receive help from others.  None of us is independent in this life.  We all buy food that we didn't grow ourselves, we visit doctors and lawyers, we count on family and friends for emotional support.  I'm not suggesting that we discard academic pursuits, but that it be balanced against the equally important need to belong.
My greatest fear regarding Alexa's future is that she won't have friends and family to support her when David and I are gone.  It may be that Alexa will need more adaptations to allow her to live a full life than that hypothetical "typical" person, but all of that is easy to provide, what isn't easy to teach in a segregated classroom, is how to be a friend.  This is not because I devalue the friendships I enjoy with those who have IDD, but because 99% of the world does not have IDD, and it's very hard to learn how to behave like a 3rd grader when you don't spend time around a bunch of other third graders.  Alexa has always been surrounded by adults who will do the work of conversation for her, so she gravitates toward them, only in the past year has she begun to learn how to ask questions and comment on things with her same age peers.  Alexa has spent 3 years in a segregated classroom, but none of her classmates from that class came to her birthday party, whereas about 10 classmates from second grade were there.   We have been fortunate enough to make a real friend or two (ones not forced by parents) from the grade level classrooms.  One of them told me today that she loves Alexa's uniqueness.   This kind of friendship wouldn't have been possible had Alexa not spent part of her schooldays in the general ed classrooms.

Welcome to Bananas Foster

I decided it was time to put on the big girl pants and start a new blog.  The Boobear Times was fun and is still active if you want to see where we've been, but Alexa is 8 years old as of June 9, 2012, so it's time for something new!
I graduated from Partners in Policymaking yesterday, and if you've been around me for the past 6 months, you'll know what that is.  It's been transformative, and inspiring, and I'll tell you about things I learned and experienced in future posts.  It's a program offered in various places nationwide, and every 2 years in Oregon, so 2014 is your next chance if you are an advocate for a person experiencing disability.
As you may have noticed I've developed a new way of talking.  It's called People First Language, and I'll refer you to Kathie Snow's  website for the details.   I care a lot about language.  This doesn't mean I never make a grammatical error, but I strongly believe that the words we use both shape and reflect the way we think.  I don't believe any of us would like to be referred to solely by our medical conditions, yet it is common to refer to people who have disabilities as a disabled person, special needs child, Life Skills kid, or autistic person.  I have a disability, yet I am not referred to (at least not to my face) as a disabled woman.  I prefer to refer to my daughter as a person with Worster-Drought-Syndrome or a person who experiences cerebral palsy.  Mostly I prefer to refer to her by name unless her disability is crucial to the discussion at hand.  I know that we live in the Twitter and Facebook generation when most people prefer to use as few words as possible, but I still believe that it is appropriate to refer to people, whose personal preferences you aren't familiar with, by the most respectful terms possible.  After you know them better, you can refer to them by whatever terms they use themselves, but until that time, be respectful.  Respect is a big thing at Alexa's school, can you tell?
My goal here is not to make anyone feel bad, after all, until six months ago, I used those words myself.  The term I used then, "special needs child," now makes me cringe.  I know many have you have rejected that term for the same reason I do now, my daughter's needs are not special.  She needs, like all of us, to belong, to communicate, to learn, to love, to be loved, to be needed and depended upon.   The fact that different support sytems are used to allow her to communicate does not make the need to communicate "special."  Do you say you have special needs if you use glasses to read? 
Oops, there I go again, off on a tangent. 
I'm going to stop now and post this before I chicken out!