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You are here: Home / Autism Parenting / What I Wish I Knew When My Son Was Diagnosed With Autism

What I Wish I Knew When My Son Was Diagnosed With Autism

December 12, 2016 by Lisa 1 Comment

The other day I spent some time talking to a former classmate from grade school. We hadn’t spoken since the summer we were thirteen. We’ve been friends on Facebook for a while but had no interaction until recently. Her son was diagnosed with autism and she wanted to talk.

It’s been more than eight years since Norrin was diagnosed with autism.

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Whenever I talk to a new autism mom I am reminded of all those feelings I felt that May in 2008 when I first heard the words: your son has autism.

Related: The Day My Son Was Diagnose with Autism 

So I listen, I offer words of comfort and advice but I still hear the uncertainty in their voice. Because no matter what I say, I know that only time will ease their concerns. There are so many things that I know now, that I wish I knew then.

Here are a few things I wish I knew when Norrin was first diagnosed:

A mom raising a kid with autism

In the beginning, I was totally alone. I didn’t know a single mom raising a child with autism. And while I had friends I could talk to, none of them understood what I was feeling. No one could point me in a direction. Since Norrin’s diagnosis, I have created a community of parents – on line and in real life – who not only understand me but understand my kid. And I am grateful that when I have a question or concern, I have someone who will listen to and guide me.

Related: 6 Things You Need To Know About Autism Parents

You don’t have to read every book on autism

On the day that Norrin was diagnosed, I ran out to the bookstore. I purchased five books on autism. I may have bought more books the following week. I was googling and reading anything and everything I could find on autism. I was overwhelmed. There are a lot of great books on autism but you don’t have to read them all in that week or that month or that year. Take your time. It’s not a race.

It’s okay if you don’t try every single thing someone suggested

Once someone suggested a certain therapy. This person recommended a place in the Manhattan and when I looked into it, the cost was way more than I could afford (about $10,000). I remember feeling guilty about not being to afford it. I contemplated putting it on a credit card. In the end, I didn’t pursue it. There will be some things that are simply out of your reach, don’t feel bad about it. Especially if there is no absolute proof that it will work. There is NO CURE for autism. It’s all trial and error. Don’t go broke trying everything.

There is no one to blame

For a long time I blamed myself. I may have even blamed my husband. The blame game is a waste of time and energy. Autism is not your fault.   

Flapping doesn’t hurt anyone

To flap or not to flap – that is the question when you have a kid with autism. I remember holding Norrin’s arms down whenever he flapped and feeling his whole little body tense up. Every therapist that walked in our door, that was the first behavior I wanted to see eliminated. Now I could care less. If I’m not asking him to do anything, I let him flap. It’s his own way of expressing excitement or happiness. And who am I dictate how he expresses his happiness?

Evaluations are important but don’t read too much into them

The first time I read Norrin’s evaluations I cried. I still have a tough time reading them. It’s not easy to read about all the things your child cannot do. But the thing I’ve come to realize is that Norrin is so much more than an evaluation. He knows so much more than his test scores reveal. I focus on all the things my child can do and how far he’s come.

Related: Reading My Kid’s Progress Report

It’s OK to Wish

Being a special needs parent can be a lonely life. Wishing that things were different, can feel like betrayal. As if you were wishing for a different kind of kid. But it’s not. It’s OK To Wish.

What do you know now that you wish you then?

Related

Filed Under: #AutismAwarenessMonth, Autism Parenting, Building an Autism Community, Our Autism Journey Tagged With: Atypical Familia, Atypical Mami, Autism Parenting, Motherhood, Special Needs Parenting

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Comments

  1. Tashira Chinea says

    March 23, 2018 at 8:31 am

    All of these things are definitely true. My son was diagnosed at 2 yrs and 4 months in Puerto Rico, and it was such a tough time for me. With a family that has never had o witness a child with autism I felt like no one could understand what I was going through. I blamed myself alot, and always felt nervous whene would hand flap in public or social situation. I am glad to have found a blog that’s not only on autism parenting, but in the latin community. MY son is now 3 yrs old and each day it gets better, we had to move to NC, US due to the lack of resources in PR. Thanks for this!

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Hi, I'm Lisa aka @laliquin on Instagram, Twitter, Pinterest & Snapchat. I'm a 40-something mom raising a son with autism in The Bronx, NYC.

Atypical Familia is a personal blog & resource site for Typical Parents raising Extraordinary Kids. We focus on autism parenting, special needs travel, work/life balance, family entertainment and more. This is parenting from a unique perspective.

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I'm Lisa aka @laliquin on Instagram, Twitter, Pinterest & Snapchat. Get to know more about me and my familia!

Atypical Familia focuses on autism parenting, special needs travel, work/life balance, family entertainment and more. If you'd like to work with us, send us an email: autismwonderland(@)gmail.com. 

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🐢 🦥 Slow and steady... I don’t want to mis 🐢 🦥 Slow and steady... I don’t want to miss a thing.
I should be working... but it’s Sunday and I’m I should be working... but it’s Sunday and I’m easily distracted. P.S. Why didn’t y’all tell me about Married at First Sight sooner?! How is it that 9 seasons in, I’m just discovering it?
cre•ate : bring (something) into existence 🌻 cre•ate : bring (something) into existence 🌻 woke up grateful for another day and the life I’ve been able to create. Day by day, my life gets better because I get better. It’s been a slow process. First I had to figure out the life I wanted. Then I had to realize that I DESERVE the life I wanted.
Happy. Unhappy. Stronger. Weaker. Better. Worse. C Happy. Unhappy. Stronger. Weaker. Better. Worse. Change. Complain. Accept. Deny. Accomplish. Regret. Finish. Quit. 
I DECIDE. 👊🏽
🦋 🦋
🖤 🖤
It’s more than okay. Today I can be grateful not It’s more than okay. Today I can be grateful nothing in my life turned out the way I planned. My life is turning out to be exactly the way it’s supposed to be. My HPs plan is better than I could’ve ever dreamed of. 🌻
Just winging it. Life. Eyeliner. Everything. Just winging it. Life. Eyeliner. Everything.
Never ever 🖤🌀 Never ever 🖤🌀
4🔥5 . . . . . As per my young friends “This 4🔥5 
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As per my young friends “This gotta go on the grid. This is not a story pic.” 🤣🤣🤣 Thank you for this collective effort 📷 @ashestogoodvibes @loutimes5 💛 #flyageless
euphoria: the feeling or state of intense exciteme euphoria: the feeling or state of intense excitement and happiness 🌻 I may struggle with depression and anxiety but I also have moments of pure and genuine happiness. That is where I am right now. One of the gifts I’ve received in sobriety is the ability to hold space for all of my emotions. I feel them, I acknowledge them and I let them pass. For me, it’s in the passing where the power is... I don’t stay in it. ✨ 45 is going to be amazing. ✨
Depression and anxiety can easily knock me down. B Depression and anxiety can easily knock me down. But I continue to get up. I do my hair, throw on some hoops, dab a little gloss and give myself a pep talk. Dear Me, I know you’re scared, but you can handle this. Keep going. Love, Me 🌻#selfcareseptember #radicalbodylove
No I’m sorry or explanation necessary. Just NO a No I’m sorry or explanation necessary. Just NO and keep it moving. ”No” is hard when you’re a people pleaser but boundaries are absolutely necessary. It’s something I’m learning to do to maintain my own peace of mind. Lack of boundaries invites lack of respect. And I respect myself way too much to allow anyone to disrespect me. 💥 periodt ✌🏼 #selfcareseptember #radicalbodylove
I try to start my mornings with a gratitude list. I try to start my mornings with a gratitude list. After meditating and writing my list, I opened my Beautiful You book. Describing myself in 25 words or less without using roles or physical features was not easy. It took a little time. But I did. Making healthy choices, setting boundaries is a daily practice. I am grateful I have the willingness to do so. I am grateful I can pause and breathe through my anxiety. I am grateful I have the courage to follow my dreams. Thank you @rosiemolinary - I am grateful for your words and online presence in my life. Hope we can be in the same room again soon. xoxo amiga 💛 #selfcareseptember #radicalbodylove
One of my favorite Frida quotes... I understand th One of my favorite Frida quotes... I understand the loneliness. More so during the quarantine. As painful as it has been, it’s allowed me to heal. The solitude forced me to figure myself out. I may not always be happy about my situation, but I am happy with myself. And I think it shows. 💛 #selfcareseptember #radicalbodylove
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