It’s Autism Awareness Month! (Just in case you didn’t know already). Today I wanted to share some more of my thoughts for parents with a kiddo who has recently received the diagnosis.
Your kid has just been diagnosed with autism. Welcome to our club. I know you probably didn’t want to be a member (I sure didn’t), but, as you’ll find out, we are an amazing, diverse, knowledgeable and incredibly resourceful group of parents. You will fit right in.
If you’re anything like me, you might feel a little lost. It is A LOT to take in. I feel like I could write pages and pages about what you can do or how to get started. But then, that probably wouldn’t be very helpful, would it? So, with the help of my beautiful friend and fellow autism momma, I’ve condensed it down to ten points. Here we go.
- Don’t give in to mommy (or daddy) guilt. I know this is easier said than done. It seems that every day there is a new research study that concludes that you when you had your child you were too old, too fat, too infertile or too much of a wimp during labor because you got an epidural. DO NOT BUY INTO THIS. Even if some of it were true (and I am not saying it is), I am convinced that you were doing the absolute best you could with whatever you were faced with at the time. According to the research, there were a lot of risk factors in my son’s history. Do I wish I’d done some things differently? Sure. But hindsight is 20/20 and I made decisions based on the best information I had at the time. This isn’t your fault. Do your best to ditch the guilt so you can focus on what needs to be done now.
- Don’t ignore it. It is totally okay to get a second opinion. But once you have the official diagnosis, don’t pretend it isn’t real. I know, this can be hard. It definitely was for me at first. But one really great thing (what? There’s a great thing?) about autism is that so many kids can make soooo much progress if they get the help they need. And you can only do this if you face it.
- Don’t be embarrassed about having gotten the diagnosis. Please, I am asking you as a fellow autism parent to be proud of your child. Don’t be afraid to tell people. Tell people about your child’s struggles and their strengths. The CDC has recently determined that 1 in 68 children have autism. It isn’t rare anymore. The world in general needs to learn more about these kids and who they are! Kids with autism are really amazing. Autism moms and dads want their kids to be accepted and embraced for who they are. But how can the world accept these wonderful kiddos if they don’t know who they are or anything about them?
- Don’t completely lose yourself to the diagnosis. This can be a challenge. When my son was first diagnosed, I got so focused on helping him that I accidentally distanced myself from some of the things and people I really cared about. Luckily, once I regained my footing, my old friends were still there waiting for me. You and your family probably won’t be exactly the same after the diagnosis, but that doesn’t mean you have to give up everything good that existed before.
- Express whatever emotion you’re feeling. Allow yourself to cry, get angry, or whatever. It’s okay! Accept that it’s a crappy hand you’ve been dealt and express however that makes you feel. Allow yourself time to grieve but then (as my friend put it) embrace your new title as Avenger Autism Mommy or Daddy!
- Look into different treatment options. There are lots of different options out there. One thing I’ve learned is that treatments work differently for different kiddos. It’s worth learning about different ones. And if something doesn’t work, then switch! We changed things up a number of times before we found the magic combination that has worked for us. And I suspect that as my son grows and changes we will probably change things up again at some point. Find what works for your kiddo and go for it.
- Get help from local organizations and resources that offer assistance. If you’re child is under three, he or she is probably eligible for early intervention services. If over three, there are likely services through the school district you can access. Your area may have an autism organization that is dedicated to helping parents get information and assistance and if there is one in your city (or near it), call and introduce yourself and get on their mailing/information list. If you live near a university, see if they have any studies going on or people who are trying to get certified in working with kids with autism or other similar diagnoses. I got free therapy for a few months after my son was diagnosed from a local occupational therapist who was certifying in a particular autism treatment. She needed a lot of hours to receive the certification and offered free therapy in order to get those hours.
- Seek out support from autism groups and other parents. Hopefully your friends and family will be there to support you, but it is also good to get a support network of other parents “in the know” about autism. When my son was first diagnosed, I started going to support groups, just so I could be around other parents who were in the same boat as me. I also had several friends say, “I have another friend who has a son with autism, would you like me to see if you could talk to her?” If you get offers like that, accept it. Even though it was completely not in my nature to do so, I actually met with or called every single one of those people who offered to help me. It was hard for me to reach out and ask for help from complete strangers, but I needed it. Those other autism mommas are the ones who really got us started in our journey. We wouldn’t be where we are now if it weren’t for them.
- Find a guilty pleasure. And believe me, it doesn’t matter how silly or stupid it is, as long as it is something you really enjoy. Once Upon a Time premiered on ABC a few months after my son was diagnosed and it has been one of my guilty pleasures ever since. I think I love the show so much because it is so wildly fantastical that it takes me away from whatever my troubles at the moment are.
- Celebrate your child and everything he or she accomplishes. One thing about autism: you’ll never take another milestone for granted. When my son said “mama” for the first time when he was over three years old, I wanted to shout my feelings from the rooftops. It doesn’t matter if your child accomplishes something big or small, and whether he or she is months or years late in doing it. Celebrate every achievement, because they deserve it!
And you, autism mommy (or daddy), deserve to be celebrated too. Your child is awesome, and so are you. Don’t ever forget that. Promise? Okay, good. You are an Autism Avenger Mommy or Daddy. Now go get ’em.
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