Saturday, August 29, 2009
"Let's wait and see." How many times has a concerned parent heard this in response to their questions about their child's developmental progress or lack thereof? It is absolutely infuriating to me, and I'm sure I take it too personally. But so much time is wasted sitting on our thumbs, going to weekly speech therapy appointments and hoping we're doing as much for our kiddo as possible. I expressed my concerns to a developmental pediatrician that I felt Katie had autistic characteristics. She was 2, I was told "It could be her developmental delays. Let's wait and see. We can't diagnose her this young." I knew better, but I relented. We continued the weekly speech therapy appointments and of course physical and occupational therapy twice a week. Two years later I asked another developmental pediatrician if she could see my concerns with Katie's ability (or lack thereof) to relate and communicate. She took a moments look at Katie and said "Yeah, I can see how she would be on the spectrum." Meanwhile, her minimal therapies over the last 2 years had done little to address her deficits in relating and communicating. The emotional connection stuff. Really, to me, the IMPORTANT stuff. Who cares if she ever runs a mile!? I'd like to hear what her favorite flavor of ice cream is and why or have her tell me stories.
So when I came across the DIR-Model of therapy called "Floortime"... I was elated and furious. I was reading a book called "The Boy Who Loved Windows" and saw a lot of Katie in his behavior even as an infant. I read about the frazzled mother who tried desperately to gain her son's love and attention. I remembered writing in her baby book when she learned to smile that it was "one per person per day"... And how she would stare at ceiling fans and light bulbs. I realized that we had wasted 2 precious years which could have been better spent doing the Floortime program and addressing her deficits. I was so disheartened. I made folders for each of Katie's specialists so that when they see a child with these progressing problems, they can offer the parents something productive to do instead of simply waiting. Floortime isn't a magic bullet by any means, and if Katie really does have Rett's Syndrome, I don't know how much communication she will ever be capable of. But the cool thing is that every child can benefit from the warmth and pleasurable interaction with their caregiver, regardless of the result. And even if your child wakes up in the morning and jumps ahead 2 developmental milestones, Floortime is still good for a typically developing child as well!
In fact, in reading the new book by Dr. Stanley Greenspan, "Engaging Autism", I am amazed and in awe of the way that children's minds typically develop. I will use the Floortime approach again, with any additional children I may hope to have regardless of their developmental status. I have yet to read anything I disagree with, although it is very enlightening to read the ways that children learn and the ways adults may or may not help them with this process. I pointed out to my boyfriend, Shayne, that it's amazing some children progress at all with the kinds of parents I observe.... But I digress. I do try not to judge, and I know that everyone has bad days, is stressed, and just generally fails to meet even their own expectations as being a parent goes. That's my disclaimer. 'Nuf said.
At any rate, I wish that this book was required reading for all people in any field specializing with children. How many people I have bumped into that have never heard of Floortime, or who say "Oh yeah, I love that!" when it's clear they have no idea of what it is all about. I wish they would tell every parent of a potentially struggling child before things feel ridiculously hopeless and out of hand.
My desire is that professionals stop treating the symptoms and start treating each individual child at their deepest level of deficiency. With the amount of energy it takes to be a good parent, let alone the parent of a child with special needs..... wouldn't you like to know that your energy is spent in the best possible direction? I would... So I'm jumping into this--headfirst.
Posted by Kayleen at 8:37 PM
Thursday, August 27, 2009
As I snuggled up to Katie this morning and looked into those big blue eyes, I couldn't help but wonder. Of the children I'd come across through talking with other parents, especially networking online, how many had received diagnoses since then? I remember excitedly sharing photos with one adoptive mother whose daughter looked remarkably similar to Katie. Especially her uniquely shaped brilliant blue eyes. I realize that I need a bigger "net" and to have much more follow-through in finding parents with similar kiddos.
Which lead me to another, slightly more amusing curiosity: What other quirky kiddos are out there? Katie has the most amazing if not mildly disturbing "double jointed" fingers. She can bend them back perpendicular from her palm under her own muscle control (without pulling or tugging them backward). She does this regularly. I swear, her thumbs don't even seem to have bones in them! I looked up double jointedness and genetic disorders this morning and couldn't find anything terribly useful.
The not so new idea or suggestion for testing for Katie is Rett's Syndrome. She would be an atypical case because she did not have regression, but was simply behind from the get-go. She also does not have any trouble in the head growth department (that's a family genetic um, blessing!) . The midwife said Katie had the 2nd largest head she'd ever seen delivered vaginally--not that I'm bragging!! She does have the autistic like features, seizures, and some other traits though. It sounds like the 2nd X chromosome can cut in and out with the affected X chromosome so it isn't completely predictable as to where the disorder will appear, though there obviously is some pattern. I laughed when I saw the post on the www.rettsyndrome.org site about being an expert in programming DVDs and other movie related devices. Katie sure loves her "toons".
So that is the first test I am going to request as I find her a whole new army of specialists here in our new big city. I am excited that we are close to a top-ten children's hospital for neurology. Hopefully they will be equally adept at genetics! We shall see.
Another thing I'm working on is setting goals for myself rather than for Katie's progress. I can't measure my success by whether or not she walks or speaks. I can only set goals for things I can control, such as how much I am going to work with her each day, how often we go for walks or a swim in the pool. I want to feel successful and I think measuring my success by Katie's milestones in the past was a huge mistake. I am also remembering to find time for me, a long hot shower, or my embroidery which I'm starting to really enjoy--not so great at it but I do enjoy it!!
Having a child with a disability is not the end of the world, but it is a different world. I have gone through so much as I have worked through my emotions. I wish I had sought out more support from those in-the-know, but maybe I can help others someday who don't know where to reach or who to ask. I know there are some people who hate the "Welcome to Holland Poem" but when I read it I take the following interpretation: This is NOT the club I wanted to be in, but I have met some of the most wonderful people whom I would otherwise not had contact with if it were not for Katie's disability. I can still stomp my feet and complain that I don't want to be here, but I know that it has humbled me and tested me. I appreciate so much of the little tiny things about life that I may have otherwise overlooked. Like conversations about poop, Katie's finger's in my mouth, and the ridiculous grin I get on my face when I hear a small child talking.
Posted by Kayleen at 10:50 AM