Summer loving

Summer loving

Wednesday, February 24, 2010

Wordless Wednesday

Ok, well not totally wordless, because that wouldn't be the true me, but I will save my next blog topic for tomorrow....

Tuesday, February 16, 2010

Kernicterus is a 4 letter word

Blame is such a powerful word. No one ever wants to be blamed for something, especially when it is something bad. As a mother of a special needs child, I spend a good part of every day in a blaming frame of mind. I blame myself for what happened to Maclain, I blame the government for not providing enough funding, I blame our therapits for not doing enough to help "fix" Maclain and so on and so on.
It turns out that in Maclain's case, the real blame is on the doctor who was supposed to be helping him while he was in the NICU. Maclain has a condition which is known as Kernicterus. It is what has caused his CP, his hearing impairment, and a few other issues. And the worst part of it all, is that this condition is 100% preventable. Kernicterus is caused by too much bilirubin in a baby's system. Or in more laymen terms, a baby gets Kernicterus from untreated jaunice. If the doctor who was treating Maclain in the hospital had of paid attention to the obvious clinical signs and put him under the bili-lights, our life and Maclain's life could be dramatically different. Unfortunately we will never know because this doctor chose to ignore these signs, choosing instead to believe that Maclain was suffering from a brain injury caused by his twin to twin transfusion which was not the case. I sometimes wish that his issues were caused by something as unavoidable as TTTS, because it would have been something that would have been out of anyone's control.
It saddens me when I hear about kids who have been affected by this condition, because it should never happen. Here is a link to a site for Parents of children with Kernicterus.

People, people, there is only so much of me to go around......

So, I used to consider myself a multi-tasker, and to some extent I still am, but balancing the daily tasks in life are so different then balancing all that is required in caring for a special needs child. Not to mention setting major expectations for myself and my kids.

As I have mentioned before, we participate in mutliple therapies, and if I had my way, I would do even more. But until the publisher clearing house van pulls up to my door with balloons and a life sized cheque, we will have to stick with what we are currently doing. ( ok, I may add in horse therapy, but who's counting)
Ok, so anyways, every therapy has goals, tips, tricks and to-do's that we need to work on, and every therapist has a set of expectations which ultimately end up in a report that I have to sign, but don't always want to read. I feel sometimes like I am dating mutliple men at once ( just a metaphor honey) and that they are going to find out about each other soon or break up with me because I can't keep up with their demands.
Here is an idea of the battles that happen in my head every minute of the day as I try to figure out what they hell I am doing for Maclain.

Conductive Education, which I totally believe in, which has overtaken my basement with wooden furniture, and which sucks my money out of my account, but I see the most promise with. They want me to date them exclusively. No exceptions. CE believes that if he and I are exclusive, my life will be full and functional and independant. But how do I keep Occupational Therapy happy when Maclain has to sit at a plinth for eating and playing, where he is not totally supported, which OT says we need for him to learn to maximize his fine motor skills. And what about PT? They would love to have Maclain in a stander so he can bear weight on his legs, and a walker that will help him be independant. CE would slap me if they heard me mention those things. But I become confused when I try to balance the value of Maclain learning how to walk one day on his own, but giving up his ability to explore his environment on his own in a walker that he can use by himself. And then we have AVT therapy which wants me to focus on having Maclain listen, but which requires me to narrate my entire day, use visual reinforcement and now tactile input to help him develop language, which needs to happen in an environment where he doesn't have to work on anything but listening. That would almost involve me doing no other therapy but AVT if I one day hope to have Maclain talk. And I didn't even mention the time I spend setting up doctor appointments, assessments, pre-school meetings. Oh, and we are going to start trialing a communication system soon, so there is another person we will be dating.

If this were truly a dating situation, I think I would break it off and just be single!

So my latest struggle is how to make CE a part of our day, while trying to make sure that we have the appropriate "equipment" for Maclain. And how we work in all of the other things we need to practice in a day while working through our new CE schedule. Oh, and did I mention that I also have another son and a husband? Just saying.....

I tell you, if I wasn't already crazy, I would have no trouble getting there in a hurry.