Acceptance. My Journey After Diagnosis.

The walk to the car with my husband after Liams autism diagnosis was filled with words we both finally spoke.

“At least now we know.” and “We will get him the best services possible”.

The car ride conversation was about how the label doesn’t change him. He is still our same little boy.

When we pulled in the driveway I started to feel a knot in my stomach. I opened my front door to walk into my home and I just stood in the kitchen. I turned to my husband and the tears just poured down my face.

He had autism.

It was the first time I had let myself cry. If I had cried before then I would be making it real and I hadn’t been ready for it to be real.
I told a few close friends and family about his diagnosis but I had decided I wasn’t going to tell anyone else. No one needed to know he had autism.

I thought, what would the label mean anyway.

I went on to get him all the services he needed and set him up for his special education pre-school.

As time went on I did start to use the word autism in conversation when speaking about Liam. Usually I felt the need to say it if he was with me and I knew he might have a hard time in the social setting and I would need to explain why.

I did unfortunately seclude myself for a while because it was just easier to stay home. To avoid a inevitable meltdown or the uncomfortable visit with friends or family.

I wasn’t concerned with them judging me in these moments. I was scared of them judging Liam. My perfect little boy. The thought of them judging any piece of him ripped my heart apart.

I just could not find my happy place. I was terribly depressed. I gave all the happiness I had to Liam and I had nothing left for me. If I did go out to enjoy time with friends I was just going through the motions. I was there but I wasn’t really.

One day it just clicked. Everything became clear to me. I was mourning the loss of the life that I thought I was going to have. I was living my life hiding from the diagnosis. Hiding from the word autism. If I didn’t say autism then it was just a speech delay, just a little socially awkwardness and just having a hard time understanding language. These things I felt were easier for people to understand. Maybe they wouldn’t put him in a different category as other kids if it was that.

That was a lie I told myself.

Liam is on the spectrum. Liam is autistic with all that comes with it. I needed to Mom up and face it head on.

I started to say it out loud in every moment I could. Liam has autism.

This was my moment. This was I how accepted it.

The label. What I had decided wasn’t important WAS. It is important for everyone to know. It is a label for everyone else in the world to understand everything that makes Liam, Liam. I was at peace. The weight had lifted and I wanted to tell the world. I was proud of my son and all he has accomplished and I wanted them to know.

This was a huge epiphany to me. I started to think about all the parents out there that are going though what I did. That deep depression before AND after a diagnosis. I wanted to show as many parents as possible how amazing life can be after you fully accept your new future. It’s a clean slate. It’s whatever you want to make it.

I decided to make a Instagram account to share all of Liam’s past and present. To help as many parents as I could through the 3 D’s.

Doubt, Denial, and Diagnosis.

I wanted to find my autism family. I decided to make a Facebook page. As I sent that invite button out to each and every person I knew, I felt another huge weight lifted. I was officially telling everyone he had autism.

From there I told the whole community I live in. We have a Facebook community page. I had bought blue light bulbs for our outside light fixtures. I posted that April is Autism Awareness month. That April 2nd we Light It Up Blue for Autism Awareness and that we were choosing to light it up for the month of April for Liam. That was my way of letting the community know.

Somehow this all made my bond with Liam stronger. I no longer needed to sweat it out in public. The cards were on the table. We could just be us. Which is what we have always been. No looks from strangers matter. No stressing about what anyone in my life thinks of anything leading up to this moment of acceptance.

19 Comments

  1. I really loved reading this. My oldest child has high functioning Autism. She was almost 8 by the time we got the right diagnosis. By that point, I wanted a label because I was tired of her being considered a behavior problem. I knew something more was going on. When I finally got her diagnosis it was though I could finally breathe again.
    Now my challenge is looking forward to adulthood. My girl just turned 17. She is so high functioning she tested out of all her services. I’ve homeschooled her for several years because she was failing to thrive in the public school system. I’m a single mom, so she has Medicaid for insurance. As we are approaching her turning 18, I feel afraid. What will we do to get her covered for insurance? She has no desire to go to college so everyone will expect her to work… But how do I send my child into the workforce when emotionally she’s really younger than her 13 year old sisters?
    Sorry for rambling. I just get what you mean about the range of emotions you feel for your child when they’re not a typical kiddo. It’s such a different level of emotion I feel with my oldest than with my typical twins. Sure I still have concerns for them, but I don’t fear for their future as I do with my oldest. I just want her to be okay and thrive but I’m scared I won’t know what to do to make that a reality.

    Liked by 1 person

    1. Thank you for reaching out. You’re feelings are exactly how I feel about my son. He is 4 now and I have no idea what our future holds. We are taking it all as it comes at us. Every single autistic person is different. Different strengths and weaknesses. My daughter is 14 and now because of Liam I am taking it upon myself to get her tested for ADHD for the same reasons you explained about your daughter. She always had the signs but I didn’t know what I was looking for until now. Until I was fully educated on autism I just didn’t know. I hope that through my life now if I can help even one person see it a little sooner, understand it a little more, its worth it to be open and share our story.

      I wish you all the best in your daughters future! I’m positive it will be beautiful because she has you.

      Liked by 2 people

      1. Thanks so much! It’s just nice to connect with other people on this journey. With Sarah being so high functioning, it feels like people take for granted how challenging it is. And people also expect more from her than she is ready to give. All because she “seems normal”.

        You should pat yourself on the back for the efforts you are making to embrace his diagnosis. I know my ex husband would never accept Sarah’s diagnosis and it eventually destroyed her relationship with him. It’s so easy for some parents to try to ignore the “label” because they want to hold onto the dream they had. But honestly, just because the dream changes, it doesn’t lessen its value.

        I honestly wouldn’t change Sarah. There are so many beautiful things about her that come from her being autistic. 💙

        Liked by 2 people

  2. Strangely you read and liked a post on each of my blogs today even though there is nothing connecting them other than my writing style. My teenage son is in the process of getting evaluated for autism. Like you, we’re finding this thread of mental health inquiry comforting. It is sometimes helpful to put a name on something. Even my son, at times, seems relieved by the possibility of autism. It doesn’t change who he is but it might give some context. Thanks for writing this.

    Liked by 2 people

  3. I love this post! My favorite comment was that having the label is “for everyone else in the world to understand everything that makes Liam, Liam.” Such a powerful statement!

    Liked by 2 people

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.