Monday, June 23, 2014
Wednesday, June 18, 2014
Since Monday afternoon Kit has been up and down with a fever.
Yesterday, we were hanging out on the bed together. She was playing on my phone, and without looking up, she said very matter-of-factly:
"I'm sick again."
"Where in your body are you sick again?"
When I asked to see her eyes, sure enough they were teary, red-rimmed, glassy, feverish eyes. They were indeed sick again. Her fever and crept back up.
"I'm so glad you told me where you were sick! I'll get you some medicine."
While I'm never glad for my babies to be sick, this was a humongous breakthrough for Kit. To be able to tell me that she didn't feel well.
While she's never been completely unresponsive to pain or discomfort, she has been seemingly under-responsive. Often even seeming to enjoy what many others would consider painful or unpleasant, such as having an ice cube put down her shirt, by laughing and shouting "again!"
For a long time it seemed like it was not the shots that made her cry during vaccinations, but rather the being held down, because she would stop crying immediately when she was released. She'll just stand in an ant pile watching the angry insects biting her tiny toes. Nor did she register that what she felt when she put weight on her sprained ankle two months ago was pain. She would say no, when I asked her if it hurt, even though she would cry.
And we haven't started potty training because she hasn't shown signs of being able to identify the feeling of a full bladder or an impending bm. The handful of times she has actually peed in the potty have been circumstantial and she always looks thoroughly surprised.
A year ago, she couldn't point to a scrape as a source of discomfort, though she does finally do this. Almost obsessively in fact, asking repeatedly for bandaids, then pulling them off to look at it then crying for a bandaid again. But even this, I think is driven by her idea that it is supposed to be covered, though I think the pulling off part might be a response to feeling discomfort from the scrape.
I honestly believe that very often she doesn't register pain as pain. She is confused as to what she is feeling. Though she is finally begining to sort out pain from pleasure. And I think it has everything to do with her sensory issues.
She still requires much deeper tactile input than the average person. She still bites on her own hands and fingers as a seeking mechanism. She actually sticks her fingers into the cat's mouth trying to get him to bite them. We have to supervise constantly the two of them, because she will not only bite him and lay on him trying to get deep pressure input, but it often takes several bites from him before she registers that it is hurting and unpleasant. She litteraly used to laugh and giggle when he would bite her, she enjoyed the sensation, and would get mad at us for taking him away.
I believe that this underresponsive reaction to pain is the same inside her body as out. She still doesn't tell us she is hungry, but she does more often ask for specific foods (mostly candy) rather than just collapsing into a crying heap of hot mess!
She has never complained of a tummy ache! I learned her about-to-puke look after having caught it with my shirt several times without any other warning. She wouldn't even cry.
With this bout of fever, and likely the sore throat and cough that her siblings have been complaining about, she just wants to nurse and be held all the time. Until the medicine kicks in, and then she wants to repeatedly watch YouTube videos about playdough...and nurse. And she's a collapsing mess every time I won't let her nurse or we take the phone or tablet away. In fact, had her eyes not been tearing due to her fever and tiredness, I'm not even sure she would have said she was sick at all. The tears were making it hard for her to watch her videos.
But she did have some kind of recognition of the connection, and I'm so glad. When I began to notice her apparent lack of ability to recognize pain, I started deliberately using specific related language over and over. When she bumps her head, gets a scrape, or other injury, I name it and say "that hurts" over and over.
I also say where it hurts first, then ask her where it hurts. "You have an ant bite on your toe. Where does it hurt?" The idea being to help her recognize what that sensation is and to provide her the language to label and identify when she gets hurt. And she is doing better with external injuries.
This is important not only for her to recognize when she is sick or hurt, but also to discern when others are, especially if she has been the one who hurt them. She so rarely displays any understanding of how her actions have hurt someone else that it is difficult to dicipline or guide her behavior. She doesn't seem to make any connection at all, except that sometimes she can elicit a scream from her sister with a pinch or fistfull of hair and tries to repeat it.
She is truly lacking in an understanding of what "hurt" feels like and means for herself, so she is all the more ignorant of what it means for someone else to be hurt.
This is definitely a skill we will continue working hard to help her aquire. And yesterday was a welcome step in the right direction. But I hope she doesn't have to tell me "I'm sick again" for quite a while.
Friday, June 13, 2014
Friday, June 6, 2014
Wednesday, June 4, 2014
Tuesday, June 3, 2014
We had our transition evaluation with the school system today. Kit's occupational therapy right now is provided through Early Intervention. But the school system takes over when she turns three. So they must evaluate her to know what needs to be in place by then. Today was cognitive and speech evaluations.
"She shows no educational signs of autism". Despite her not speaking, just using signs, until well into the evaluation. She scored so high on the intellectual tests that they believe she is probably gifted. One test they just had to stop because she never hit the six wrong answer ceiling. The material she ended on was well beyond kindergarten level.
All of that makes me happy. Sort of. It should make me happy.
Except it also means that she is not going to qualify for any assistance, which I already knew.
Intellect is her specialty. But she still can't make it through the day without major sensory adjustments, huge amounts of planning and redirection, and work work work. She can't answer basic questions like 'how are you?' that are based on identifying feelings or other abstract concepts. She can point out picture emotions and label them, but she cannot connect them as reactions to actions, especially not to her own actions.
But according to them...She makes eye contact. She points. She can have back and forth interaction. She is not intellectually delayed, therefore no signs of autism.
But what they just don't understand is the amount of work and practice I have done with her over the last two plus years to help her communicate and be comfortable in her own skin, and less anxious. That without teaching her sign language, and sensory integration therapy through her OT, we would have completely lost her so deep into the void I have no idea where she would be right now.
We found her keys very early and were able to use them to build bridges and make huge progress in a shorter time than many others, but that doesn't mean she doesn't have daily struggles still.
It doesn't seem to matter that she lost all speech and was nonverbal for nine months. That because she can speak now, autism must not have been the culprit. Which makes no sense to me since the goal of most autism therapies is to get the child to the point where they have "few to no remarkable differences from peers" and that they become able to interact with little "interference". The goal is to be able to mainstream, and help these kids participate in life with less disruption.
If a child meets some or many of those goals, that doesn't mean their autism is gone, or never existed the first place. It means the therapy is working. The hard work and perseverance and coping skills are seeing the hoped for results.
Her intelligence is not a sign that she doesn't have autism, it is a key to helping her manage and cope with it. To be able to work with it instead of against it. Her eye contact, and back and forth conversation is proof that all of her tools are helping. That her brain is finally feeling organized. It's a sign that all the work we have put in has helped her before she sank into the void where so many on the spectrum end up.
Just makes me cry. It feels like we will always be troubleshooting alone. It brings me to tears every time to know that if I hadn't worked with her past my breaking point, that she would be manifesting all of the 'delays' that they look for, but she would also be miserable as would our whole family, but none of the "professionals" seem to ever really get that. Or how much work most days still are with her. How delicately balanced everything is with her.
That when I burnt out and stopped working with her daily, (just did basic life care like feeding, diapers, bathing, but no OT, no sensory diet) she regressed again. Her speech dramatically reduced, her reptative behaviors substantially increased, as did her anxiety.
We still have the offical Autism evaluation to go through. I'm not expecting her to meet that critiria either since it is very different than a medical diagnosis. I still can't understand why they are not the same critiria.
I wish there were more professionals out there who could see the scope beyond delays. That that is just one small, though for many kids, critical, part of a much bigger picture. But it's too hard to test for the bigger picture.
Our Occupational Therapy ends the day she turns three. And as far as I understand, the school system offers no suitable alternative even if she qualifies for sevices. We will likey be back to all on our own. She's improved phenomenally over the last nine months, a whole different kid. Hope we can keep helping her stay as steady as possible after OT ends.
How different it would be if those who do evaluations were required to come spend two solid weeks in our home, day and night. To see what we see, and what we do, and how she can go from having a great day to awful in just seconds. To glimps the subtleties and nuances that add up to big impacts.
They asked me today, when she grew up what I wanted her to be.
I thought it an odd question. Who am I to say what she should be? What I want her to be is of little value, it's she who has to choose to be anything.
What do I want her to be when she grows up?
I want her to find her passion and pursue it.
And that's exactly what I told them.
And that's exactly what makes every ounce of effort we expend worth it.