The rules

There has got to be common ground. I have started this blog to give people a place to tell their stories...positive stories . Too often we are mired down in the hows and whys, causes and cures. It is easy to forget that we are talking about people. One of the misconceptions that I have run into is that because I have children with disabilities-I am not allowed to have joy-nor are my children allowed to be joyful. Some of the comments I have received after relaying a funny story or anecdote...well you would think I had been kicking kittens.
So here are the rules. Anyone can submit a story,OR just a couple of sentences,OR a list of five great things either about their children or themselves. It must be positive, There will be no discusion of causes, cures, treatments, etc. There are more than enough places for that. Mean people will be deleted. If you are interested in taking part in this adventure please submit your story to kickingkittens@live.com please no pictures or video-lets keep it simple.

Monday, July 18, 2011

Carolyn from neurotypical mom


This post is from Carolyn over at neurotypicalmom. Why don't you all go check out her blog! 

My seven year old has Aspergers and I need to become a Pediatrician.  It still feels very strange to say both of those things.  Perhaps because we have only had an official diagnosis for 5 months?  But that's not it, not really.  Getting the diagnosis was such a relief, after years of Z being thrown out of schools, acting oddly on play dates, destroying our house and making me curl up in a ball and cry weekly.  No, once we had the diagnosis I actually exhaled.  Consciously, I never even knew that I was holding my breath, but I must have been.  For five years at least, because once I heard Aspergers, my first thought was, 'finally, thank god!  Now we can actually help him!'  And help him we did.  A whole new world opened up to our sweet boy, he began to blossom in ways that I could never have imagined.  Our relationship flourished as it never has before.  We are close now, he comes to me when he's sad, just last week - he told me he felt sick!  Hence the need for the aforementioned medical degree.  

What a huge victory that was!  I can assure you that has never happened before in his entire existence.  I've spent most of his life feeling as if I were a perfect candidate for 'Worst Mother of the Year' award.  Especially when I would do things like take him on a plane and he would say, casually, mid-flight,  'huh, my ear just popped'.  Why - you might ask - does his ear pop?  Well, that would be because of the raging ear double ear infection that he had prior to getting on the plane.  The one that I never knew about - I swear!  
The doctors would always look at me with reproach, 'this looks like it's been going on for a while, Mom', they would say as I looked at them helplessly, a mix of guilt and anger churning in my gut.

'Do you think I knew and I kept it from you? That there is any part of me that would want him to suffer, EVER?  No folks, he didn't tell me.  He didn't act different in any way.  He was his normal self, running around the house, banging into walls, falling on the floor and laughing.  He was only BUSIER, MORE EXCITED and MORE FRUSTRATING - that's all!  That's the only clue I would ever have that all was not right in Z's world.  And, I'm sorry, sometimes I missed the signs.  I didn't do it on purpose, I would just get busy, in the way that parents do and suddenly it would occur to me that Z was acting like he was on a day pass from the loony bin and had been for the past 48 hours...

How much would be solved if I was a pediatrician.  Then, if Z started acting a little more hyper and I could break out the stethoscope and look in his ears.  Or pull out a throat swab and test for strep.  How I could avoid so much pain for Z (not to mention all of the judgement for me).  If I have one more doctor look down his or her nose at me and treat me like I'm a bad mother I think I will lose it.  I may actually scream the words throbbing in my head!  
'I'm not doing it on purpose!'  
'He didn't tell me!' 

And when he's really sick, the times that I actually do know how bad he feels because his behavior is soooo over the top,
'I want to help him too',  
'I want to hold him and make it better',
'I want him to stop screaming every time I touch him'
'I want some peace'
Most of all, I just want to know how to make my baby feel better, it must be hell to be in his mind sometimes. I can’t even imagine and if I try to, it hurts my heart.  Maybe if I was a pediatrician, this would all be better.  At least, that's what I tell myself.  Soooo, anyone know any good schools that take stay-at-home moms?  Or perhaps there is a way you can get that M.D. online?  Any thoughts?  Anyone? Bueller?

2 comments:

sharon said...

Maybe not a full medical degree, but at least we should get some basic assesssment skills and tools in order to decide when it is time to go t the Drs. And in kind we can offer to train Drs about ASD.

Caroline said...

I think every parent should invest in an otoscope/auriscope. They are pretty easy to use and in a few seconds you can see if the ears are playing up again. Of course you still need to see the GP for a prescription if there is an issue, but takes the guess work out of the equation- especially when our kids don't give us any clues!