I’ve wanted to write this for some time. I’ve wanted to write something so awesome about all of the things I wish someone would have told me when we were getting Casey diagnosed. All of the perfect things that the one mom I knew who had walked the road before me had said. I can’t get my thoughts to come out right. I tried writing it in a poem. It sucked. I’ve been writing my thoughts on random pieces of paper. So that’s what you’ll get. More Lexi randomness.
What I’ve learned in the first five and a half years after diagnosis:
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! When Casey was getting diagnosed I felt like it was me and my husband verses the world. So many people told us that labeling him was wrong. Others, in their attempt to provide some “hope” showed us all of the things that Casey did that meant he was not autistic. He looked at you in the face. Sometimes. He responded to his name. Sometimes. 5 years ago there wasn’t as much on autism out there that there is today. All I could find on the internet were horror stories and statistics. That’s changing. On Babycenter.com there’s a group of parents whose children have Autism Spectrum Disorders (ASD). We post our questions. We meet new people. For me, it’s been one of the only ways I’ve had to be able to talk about what is going on with Casey to people who really know. It’s made it not so lonely.
While we were in the process of getting Casey diagnosed I had a friend tell me, “don’t stop being social, so and so got their diagnosis and then we never saw them again…” I was also told that I wasn’t “fun” anymore by another friend. People didn’t want me to change. But how could I not? I felt like my whole world had been turned upside down and shaken until all of the pieces fell out. It wasn’t until years later that I truly felt like I had started to put those pieces back together again. There are very few things as hard as wanting to be social when you have a child that hates people. I stopped hanging out with my friends as much, and found myself in a much sadder place. Even when I did, I never told them how things really were at home. Very few people knew that Casey raged for several hours a day. I didn’t even tell my mom. Because for some reason I thought that parents of children with special needs were superheros. And superheros don’t complain.
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. Before Casey, I didn’t know what to do or say to parents who had children with special needs. Look around you. There are people who want to help. If you can’t see them, pray to be able to. It works. I promise. Ask for help. That’s the one thing I didn’t realize. That I could ask for help. Sounds so silly. I thought I was supposed to be able to do it all on my own. I thought that I was supposed to be a superhero.
I am not a superhero.
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- I’m a strong believer that God has a hand in our lives. 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. I know this from experience.
Autism is hard. 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 is hard. I bet even superheros think their jobs are hard, sometimes, too.
You’ve never really lived until you’ve had a child with special needs.
This is a funny one. It occurred to me while I was listening to a song by the Eels. The lyrics go
“Do you know what it’s like to fall on the floor, cry your guts out ’till you got no more, hey man, now you’re really living”
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! There were many times after dropping off Casey at therapy or school I’d sit in my car listening to “Given to Fly” by Pearl Jam so loudly that it made my ears ring. I’d sing along until my throat hurt. It may sound psychotic, but it helped.
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. At an autism conference I attended a sweet lady I love handed me a spine shaped keychain. She said, “here’s your spine, you’re going to need it.” How true that was! 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 was told this same thing by a lady whose son was diagnosed several years before Casey. 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.
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 Casey is supposed to have autism (see my post on acceptance: http://mostlytruestuff.blogspot.com/2009/12/acceptance-came-from-long-haired.html) 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.
It took me 4 and a half years to get to the point where I could truly say that I was okay with his autism. Where I stopped looking at him and seeing the autism…but really seeing the kid. It doesn’t mean that I’ve stopped fighting like crazy to make sure that Casey has everything he needs to succeed to the best of his abilities- it just means that I’m okay with it now.
What matters most is that your child is (mostly) happy.
Having a child (or two) 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 Casey. 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 Casey 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. The same with my daughter Abby, who has Down syndrome. The same with my other two fantastic kids, Carter and Peyton. 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.
This has been rambly, but I said it would be, so stick it. I have so much I want to say, but am completely unable to do it. So I’ll end it here. I hope it helps. I hope anything helps. I’m sorry for what you’re going through right now. I’ve been there. It was the hardest time in my life. But it gets better all of the time. It’s not always uphill, but it’s always okay. And that’s fine with me.
3 thoughts on “To the Parents of the Newly Diagnosed”
I love these posts of yours and I LOVE Casey. Such a sweet, sweet boy!We've already had the superhero conversation and you know what I think – you definitely are one!
You are truly the best! I feel so much better reading this. My son has not been diagnosed as of yet but he is showing signs. He is four years old and he is my world. I was doing the blame thing also because I have an older son and didn't have any issues with him. I am glad to have found this site and read your blog you are truly an inspiration. Your son is beautiful! You are a superhero!
A friend recommended your blog and I love it! I have a 3 1/2 year old daughter who was diagnosed with Asperger's about 6 months ago and we are also members of the Church. Thank you for sharing your thoughts and expiriences, your family looks great 🙂