The whole point of this blog is to be positive and celebrate the great things that Autism brings to our lives. Well, if you don’t whine about the sucky things once in awhile, it seems like I am glossing over them, trying to just put a la-de-dah spin on things.
The truth is, some things about Autism suck.
The first extremely sucky thing:
1. The diagnosis. I’m sorry, but there is not one parent alive that hopes and dreams that one day her child will be diagnosed with autism. In fact, I bet most will jump through a dozen or more hoops to avoid the diagnosis. Maybe it’s SPD, OCD, developmental delay, fragile x, first-born boy syndrome….
Why do I hate the diagnosis? Because in the majority’s eyes, AUTISM is still non-verbal, low functioning, probably mentally retarded, definitely a second-class life diagnosis.
2. Public Places. These suck because there might be too many people. Or, maybe your son will have a (minor) meltdown and you’ll feel the incriminating glares. Maybe it’ll be a major meltdown & you’ll hear the very unhelpful comments. Public Places get a second, honorable mention because they tend to be open, without barriers and a running child can easily become lost. (and then you get to deal with more stares and comments)
3. I.E.P. (Individual Education Plan) These are long, drawn-out nightmares. I hear in the US they are worse, so I feel lucky that ours went very well. But, the fact remains that it took well over 5 hours of time away from work to get one written. (In January, which, if you are keeping track, means 1/2 the school year was done before the IEP was written)
4. Therapy appointments. I swear, I spent more time in therapy with Nathan some weeks than I did with my husband. We have a great therapy team. Without these ladies, I’d have lost my mind, no doubt.
5. Doctor appointments. We’ve seen the Developmental ped twice, after the second visit, she basically dismissed us with no diagnosis, no help. We also see an Opthamolgist every 6 months and used to see our primary ped once a month. (Once the ear infections quit, we’re down to once a year) Doctor appointments are particularly awful because they all involve at least a 2 hour drive, sometimes 4 hour drive. And yes, that’s one way.
6. Having your friends fade away. This is hard because you don’t even realize it has happened until many years later. You’ve been so busy with your own life that you didn’t notice. You missed their babies, their struggles, they joys, and if it wasn’t for Facebook, you wouldn’t even be sure they were still alive. And, you don’t even know if you ticked them off or if they just got tired of waiting for you to make time for them.
Ok, there’s 6 things. I invite you to list a few more. Thinking ahead, April is Autism Awareness month & I intend to promote it, not whine about it. So, I’m getting my grumpy post out of the way now. Thanks to all my bloggy friends, I don’t know where I’d be without you.