To clarify

Having thought about it all day, I wanted to emphasize that I do not undervalue the contributions of those of you who do help with Alexa, especially her teachers, who I greatly treasure. Nor am I trying to say that those of you with small children of your own should be helping me. I am pretty much just trying to explain how things are going, and hopefully encouraging those of you who might be watching someone struggle to do something someday, to offer to help. Perhaps you are afraid of offending somehow, but if there's an obvious need, I think a simple "Is there some way I can help you?" cannot offend. I would certainly have appreciated someone offering to help carry my groceries to the car.

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Where is my village?

You know how they say it takes a village to raise a child? I would have to say I agree, but I'm not sure what happened to mine.

We've been having a difficult week here on Planet Alexa. Alexa got the stomach flu Tuesday night and vomited periodically until mid-day Wednesday. This caused us to miss our weekly picnic with the teachers and families of the Life Skills classes. We also missed a chiropractor appointment and a motor buddies class. This may have had something to do with how Thursday and Friday went for both of us.

All summer Alexa has been having lot of trouble leaving places, the train table at the grocery store, the park etc. I have been required to pick her up and carry her to the car, and sometimes force her into the car seat and hold her there with my full weight. She weighs 42 pounds now and is 46" tall, and she throws herself perpendicular to me which kills my back, and she kicks and struggles. Usually I am carrying at least my purse, and often something else as well.

Thursday night, we went to a softball game and there was a fun park next to the field, and she would not leave. I had to carry her accros the field to the park, stopping twice to rest and force her into the car. This always seems to be interesting and entertaining to onlookers as well, though I have only once ever had someone offer to help me.

On Friday Alexa has her dance class at The Little Gym, and I mistakenly parked in from of the kids resale shop, and Alexa decided she wanted to go in there. I was carrying my purse, her dance shoes, and a cup of iced tea, and I had to put it all down on the ground and hold her down while I explained that she could either go to dance class or we would get in the car and go home. She finally decided to go to class. In her class is another little girl whose mother knits, and I was drop spindling while watching Alexa's class. I mentioned to her that Alexa was starting to get mad at me for spinning when she wanted to play with me, and she bats her hands at my yarn and fiber, or pulls it off the bobbin. She suggested that maybe Alexa just needed my full attention right then, and said that she almost never knits during the day because she finds it hard to tear herself away and during the day her daughter needs her full attention. And at the time I thought, maybe she's right, maybe I should not do anything during the day that it is hard to drop immediately when Alexa needs me.

And if I can go backwards for a moment, while I was talking with a friend earlier in the day, during the time that Alexa was mad and messing up my fiber and hitting my scale, and deliberately knocking a jar of vinegar off the counter, I yelled for her to stop, and my friend asked if I had tried changing my tone of voice. She finds that this works for her two year old. I said that I always started by asking nicely, but Alexa almost never responds to that now, she won't do something unless I yell, and sometimes not even then.

So anyway, after dance class, Alexa decides she wants to go back to the resale shop, though I moved the van during her class so she wouldn't see it when she got out, hoping she would forget. I bribe her into the van with the promise of a visit to the grocery store. She's too big to fit in the basket at that store, so I have to follow/chase/wheedle her through the store, trying to keep her from running into people, standing too close to men, staring at their hands, trying to give them high fives, explaining what she wants a thousand times, and then she spots the salad bar, which has mandarin oranges and pineapple, two of her favorites, so I agree to get her a snack. Then I am carrying a plate of food in one hand, pushing a cart with the other, and trying to manage Alexa with my voice alone. Finally I get through checkout, explain to Alexa that the two young men holding food in their hands cannot give her high fives, and that she should just wave hello or use her talker. We sit down for about five minutes of relative quiet, and I think, this isn't bad, we are enjoying each other's company, and then we finish our snack. I throw away the plate and sling the heavy bag of groceries over my shoulder and tell Alexa it's time to go, but she decides she wants to go back through the store, so I try holding her by the wrist/arm and not letting her get down on the ground, but she swings her full 42 lbs onto my arms,and I am holding her wrists straight out in front of me, and she is swinging from them, like I am the monkey bars on the playground, and I almost fall over. Remember, I have Charcot-Marie-Tooth disease, and when I am really stressed, sometimes my muscles won't do what I ask of them. So I am fighting to pick her up, in the doorway of the grocery store, with a million people looking on, and no one offering to help, and though now I realize I should have just sat her on the ground there and given her a time out where she was, I put my groceries on the ground, and pick her up and carry her across the parking lot while she kicks me and I try not to sob in front of everyone. I strap her in the carseat and walk back to the grocery store and pick up the groceries, which thankfully no one has taken. Then I'm in the car, and I'm sobbing, and I don't want to go home with her. I drive to David's office and he agrees to come home early. Later last night she finds a container of small beads that I bought to put on my yarn, and opens and spills them all over the floor, and then I am sobbing again, and I decide that maybe I just can't spin or sew or do anything selfish, and I put away my spinning wheel and all my fiber and my serger that she has pulled and knotted the threads from over and over again. Maybe the other moms are right, and I shouldn't be engaging in selfish hobbies when Alexa needs me. And then I go to bed, early, because I want this day to be over.

This morning when I wake up, I am calmer. David takes care of Alexa for four hours on Saturday morning so I can go to famer's market and the gym. He takes Alexa to her swimming lesson. Then I have her for four hours in the afternoon, so he can go to work. I take out my spinning wheel again. I desperately need something pretty in my life, and I love fiber, dyeing it, spinning it, knitting with it, and I try to make enough money by selling my yarn on etsy so that my hobby doesn't cost us a lot, and I am just not willing to give this up right now, it helps keep me sane.

I met with a counselor this week about a parenting class he's going to teach at the office where Alexa goes for therapy. He kept saying to me, "You seem really stressed," and I kept saying that I was, and that I felt like I was failing at the one thing I was trained to do from shildhood, be a housewife and a mom. I have so many extremely competent mothers as friends, and I don't know why I can't manage what seems so easy for them. Alexa's behaviors are the same ones their children exhibit, and they manage to survive. The difference is, as this counselor pointed out, they are not starting out with a disability of their own, and Alexa's behaviors last more than twice as long. She is also much bigger than most three year old kids are when they pull the lying on the floor like a limp rag trick.

I feel so alone most of the time. There are people for me to talk to, but there is no other pair of hands to help me.

What is the "talker"?

For the benefit of Kylee and others who don't see us in person I thought I'd try and explain Alexa's talker. It is an iPod touch and it uses an app that is called Proloquo2Go http://www.proloquo2go.com/. The website is great at explaining but it's basically a text to speech device. It comes with nearly 8000 preloaded vocabulary words, and you can add your own after that. We call it a talker because alternative communication device is just not a practical label for everyday use.

Her very clever teacher adapted a sports armband to stay on her very tiny wrist, and now it is quickly accessible. Alexa is fantastic with this device, she quickly learned how to navigate through the screens, and loves to explore the preloaded vocabulary pages. One great feature of the app is the option to take a picture with the iPod and use that on a button, so all her friends and family are in there. She uses it at school to do her reading and to do schedule each morning. She is beginning to use it with a lot of prompting to introduce herself to new people. She still tends to default to her high fives and performance of gymnastics moves method of conversation initiation, but I am trying very hard to steer her away from this method. It is proving difficult however, because many of the adults in Alexa's life find it hard to resist giving her a high five or a hug instead of waiting long enough for her to get her talker on and to the right screen. The additional difficulty is that the speaker in the iPod is not loud enough to hear when in a crowd of people. We got a bluetooth speaker to use in noisy situations, but that also takes a moment to turn on and those two moments are too much for many people, they move on to talk to someone else.

Visit to Aquarium: 4th of July

I'm trying out Picasa and blogging directly from Picasa, so this will be brief. We went to the aquarium yesterday for the holiday. David actually took a little time off work, a rarity around these parts, so it was fun to have a family outing. We got back to Philomath for Alexa's Motor Buddies class, which began working on baseball/T-ball. Alexa actually managed a couple of good swings and a couple of good throws, so that was fun. Now we're plunging headlong into our busy week. Today we have horseback riding for the first time in a few weeks, so we're looking forward to that. I recently found out that a picture of Alexa is on the Riverbottom Stable's website, it's kind of small, but if you know Alexa you can tell it's her.

Should I keep blogging?

Or more accurately, should I resume blogging? I haven't been too good about updating the blog for the past few months, and I have been puzzling over whether to try again, or sort of give up for good. I know that some people rely on the blog for keeping up with what's going on with us, and for the sake of some of those people, and for the ways in which I can use it to advocate for my daughter, I am inclined to continue. However, even when I was posting more frequently, I got very few comments, and my visitor map seemed to indicate a number of people in countries I'm sure I don't know anyone. This led me to believe that many of my blog viewers are not people I know, and not people I wish to share the more private details of our life with. I readily admit that this is at least partially my fault. I have a bit of a chronic oversharing problem, and I think this is partially due to the fact that I am the stay-at-home mom to a non-verbal child, so I don't get as many opportunities for conversation as I would like, but I need to define some boundaries with regard to what is personal and what is public. I know that I could make the blog private, and by invitation only, and this would alleviate some of my concerns, but it would prevent me from reaching as many people as possible when I do wish to address issues that are more public.

I have decided, for now, to keep the blog public, and to be more discreet about what I publish here.

The biggest news that I do wish to share is that in February we finally obtained a diagnosis for Alexa. She has a form of Cerebral Palsy called Worster Drought Syndrome, or WDS from here on out. There is a nice pdf document at the WDS support group page that will detail it for you if you want to know more, but it is basically a form of CP that most strongly affects the tongue, lips and jaw muscles.

The doctors in the clinic at Doernboecher recommended focusing on her AAC device for speech, since it is unlikely she will ever have much intelligible verbal language, and signing is somewhat difficult due to her limited fine motor skills. We do continue to us a lot of sign language, but it takes someone familiar with Alexa's particular way of signing to understand her easily.

We are trying to encourage her to use her talker as much as possible, and particularly out in public places. This is someone hard to do because she has relied on high 5s for so long that she defaults to that, and unless asked to, or waited on, she doesn't always use the talker.

It would be great if those if you who see us in person would limit yourself to one high five and then ask her a question or let her ask you one. How are you? What are you doing this summer? How old are you now? etc...and if you think of something you would like to ask and she doesn't seem to understand or have it in her talker, please let me know, and I will add it in. Her talker is on her wrist now, and is loud enough for a quiet area, I will try to have the bluetooth speaker with us more frequently to allow communication in a more noisy environment.

I would love to hear your viewpoint on the issue of privacy with regard to blogging, and if you do regularly read the blog, please consider letting me know with a comment now and then.