I stole this from a fellow blogger - http://www.mostlytruestuff.com/2010/12/to-parents-of-newly-diagnosed.html.   You all should read her blog...she has a daughter with down syndrome and a son with autism and she is a VERY good blogger.  Following are a few points she made that I have always wanted to make but couldn't find the words.  Remember, this is Lexy the blogger talking but it is what I was thinking (just change her son to my daughter!).

To the Parents of the Newly Diagnosed

You're not alone, even though it feels like it. With 1 in every 110 children being diagnosed today (1 in 70 boys) new members of our club are joining all of the time. Statistically, we get a new member every 15 minutes. That sucks! What I didn't realize was that people, even if they couldn't really understand what I was going through, wanted to be there for me. At least the good ones. That's the thing about autism. It's a great sifter of good friends and not so good friends. They just had no idea what to do or say. I couldn't blame them. Look around you. There are people who want to help.

Parents of children with special needs are not endowed extraordinary powers at diagnosis.  Sometimes I think people want to think that somehow parents of kids with ASD or other disabilities have superhuman abilities that they themselves do not. That's why they were given the kid with special needs right? It's not true. I'm a normal mom. My situation is what is abnormal. In looking back on my life, I can see that I was given opportunities to prepare myself for this. But most of what I am now has come after the diagnosis. It'll come to you, too. You'll find a reservoir of strength you didn't even know existed. Then maybe you'll be your own form of superhero, but don't ever feel like you have to be. It's all right to be a crummy mother or father some days. It's all right to read a good book that isn't about autism or go on a date with your significant other. Give yourself a break or you'll go insane. Autism sucks. It's okay to say that. It doesn't mean you don't love your child with all of your heart. It doesn't mean that you wouldn't move mountains for them. It also doesn't mean that you don't see the good that comes, the miracles, the blessings. It's just saying that some days, autism just sucks. I bet even superheros think their job suck sometimes, too.

You've never really lived until you've had a child with special needs.  I had always thought that really living meant having only the "highs" that life brings. Not true. Really living is having the full range of the human experience. Feeling the darkness and the sadness that pulls right through your bones makes moments of light and clarity feel a million times better than they would have on their own. The first time your child says "mom" is a lot more exhilarating when you think it might not ever happen. Let yourself feel the emotions. If you want to be angry, be angry!


If you don't already have a spine, grow one. Thick skin helps as well.   I hate confrontation. I hate making calls to ANY sort of business, much less insurance companies, therapists, school districts etc.  It's HARD advocating for your child. It's HARD telling teachers that they're wrong- and sometimes they are. Sometimes the school district needs to be reminded about the laws that protect children with special needs. Sometimes insurance companies need to hear you scream. I feel like I'm a lot more confident than I ever would have been if I hadn't had to go through all the crap that goes along with an ASD diagnosis. The skin thickening is another byproduct of autism. You get looks at the grocery store when your child freaks out. Yes? You worry that people think that you're a bad mom or that he's a bad kid when really, you both are doing your very best. It's hard, but you have to get over it. I gawked at such a thought! Get over it?! Yup. People don't know. It's not their fault that they don't know. They don't need to know, really, either...unless you think it would be a good teaching opportunity. I've come to the point where I just smile and say, "we're having one of those days" and get on my way. Because I know better, and because I love my son. It's not his fault that Walmart is a death trap. It's not my fault that their diapers are so cheap.

It's not your fault.   This one is one of the toughest for me. I'm still coming to grips with the fact that this is the way it's supposed to be. That my child is supposed to have autism and that his autism is not my fault. I researched for hours and hours hoping to find the cause of autism all by myself just so I would know that at least it wasn't me who caused it. I thought for sure it was the flu shot I got while I was pregnant or having gone to the dentist and having fillings done before I knew I was pregnant with him. I had to give that up. It doesn't help any one to blame yourself- or anyone else for that matter. Guilt is not empowering. It's corrosive. This is not your fault.

What matters most is that your child is (mostly) happy.   Having a child with special needs has taught me a lot about what this life is really about. It's about living up to our potential, but more importantly, it's about being happy. I worry so much about him. It keeps me up at night. There's this spot in between my shoulder blades that hurts a lot because it's where I tense up when I'm stressed. I have to remind myself over and over that he is happy. Mostly. He has his times- a lot of them- where he's not happy, but overall, he's a very happy kid. It's been a fight to get here, but it's so worth it. I adore him. With all of my heart. Simply put, that kid is my JOY. He might never become a doctor, but I'll do whatever it takes to make sure that his life is everything HE wants it to be.  Because really, isn't that what it's all about? Isn't that what regular parents want for their regular kids? For them to be successful in something that is meaningful to them? That is not lost on children with special needs. My kid will find their niche and will teach the people around them about true happiness. I know they've taught it to me.