Day 30: A New Journey: Our ASD Diagnosis

Miss a post of Benji’s Story? Catch up here!

I wasn’t planning on writing this post during this month, primarily because I didn’t think we would know what we found out this week. Yes, I know. #cryptic.
Let me back up a bit.

During Benji’s Child Study (and for months and years before we started this process) Aaron and I had a niggling suspicion that went like this: “I wonder…if he has autism.”

When I wrote this post, I briefly alluded to my suspicions about autism. In moments of doubt, I would do a few days of frantic research, reading lists of symptoms, but always dismiss my fears. BiggerButton

And I don’t say “fears” lightly. I was deeply afraid of turning over that stone. I didn’t know what I would find, and I was afraid.

But through this last year–the research, the learning challenges, the sensory issues, the Child Study–the pieces started to fall into place, but the picture was incomplete.

We kept wondering.

Even the members of our Child Study team, those wonderful teachers and professionals that had spent hours teaching him, observing him, and testing him, said, “Hmm…do you think…?”

And we said, “Maybe. We see it too.”

We saw the obsessions about certain topics that he would talk about endlessly and repetitively  (dragons, transformers, Turbo, or whatever it was that month)
We saw his difficulty with two-way communication.
We saw his struggles to make friends that went far beyond shyness or social awkwardness
We saw his sensory issues (which I knew 80% of children with autism exhibit, though not all children who have SPD are autistic)

So instead of living in the doubt and fear anymore (because those questions will make you crazy), in July, we decided to officially test him for ASD (Autism Spectrum Disorder).

I talked to my pediatrician and he made referrals for us.

I could write a really long post this process, but I won’t today.

The important thing is the results: On Monday this week, the day I wrote this post, Benji was officially diagnosed with ASD.

“He’s high functioning,” the doctor said. “But, there are definitely some challenges that we need to address.”

I nodded, absorbing this news, wondering if my face looked as shell-shocked as I felt. I tried to form the most logical question I could, under the circumstances.

“So, what’s next?”

And we talked about Cognitive Behavioral Therapy, Occupational Therapy, appointments and testing, about forming new pathways in the brain, all while my 8 year old son sat at my feet on the rug, lining up plastic farm animals beside a red wooden barn, listening.

As expected as this news was, the grief that hit me in the aftermath was swift, fierce, and deep.

I have not been okay this week.

In fact, I had an emotional breakdown yesterday in the mall parking lot and my husband took off most of the day at work to come home and be with me.

I spent all afternoon in bed.

So, why am I telling you this? For this reason: to let you know that other people fall apart.
I fell apart this week.
I have cried a lot.
I have been angry, sad, confused, and wanted to lay down and just quit.

But I can’t quit.
So I took a nap instead.

And then, after my nap yesterday, I felt a little better.
So I got up.

I made breakfast burritos for my family for dinner.
I graded some papers and prepared my lectures for my on-campus classes.
I listened to Micah read and I nursed Eli.
I chatted with some friends on facebook and texted my sister about my crazy day.
I talked and laughed with my amazing husband after our kids went to bed.

I may not be “fine” this week but I will be.

This grief, as much as it has griped my body and soul this week, will pass, and I will find a new strength for this new journey.
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I have to, because Benji needs me.

23 Comments

  1. […] Day 1: You’re here! Welcome. Day 2: When your “normal is not Normal Day 3: Writing the Letter: Pressing for Testing Day 4: How I’m doing Write31Days + My Crazy Life Day 5: Yeah, it didn’t happen Day 6: The Pieces of SPD or How I learned to Hug my Son Day 7: The Day People Stared and I didn’t Care Day 8: The [un]Predictability of SPD: How we’ve learned to Plan for the Crash Day 9: Celebrate Benji and Micah! Day 10: Letting him hide in tiny spaces: Meeting the needs of your SPD child Day 11: Mom, I don’t have any friends: Social Challenges of SPD Day 12: What Getting an IEP really looks like Day 13: [Not] Handling Stress: The emotional toll of the IEP process Day 14: Mental Health Break Day 15: “If you think you’re going through something hard, it’s because you are” Day 16: Celebrate Benji the Bard! Day 17: The Twin Factor: A Special Relationship Day 18: [Not] Benji’s Story…BUT MENG MENU! Day 19: The Twin Factor: Why We Chose Separate Classes Day 20: The Twin Factor: Smarter, Better, and other Ugly Words Day 21: My Insane Week Day 22: The Twin Factor: An Impossible Decision Day 23: Failure, Comparison, and Choosing Joy Day 24: Just give us a label already! Day 25: One Week Left Day 26: Rooting out Expectations Day 27: When you want to walk away…and how to come back Day 28: The way to his heart is through his stomach Day 29: Getting Answers Day 30: A New Journey: Our ASD Diagnosis […]

  2. Wow, such an important week. There is power in knowing what you’re up against. So for now, fall apart, regroup, be the student and give it hell. I don’t even know you but from reading your blog know you are ready for this.

  3. Laurel J

    You are grieving the loss of “what might have been”, and that’s ok to do that. Like you’ve said before yourself, a label does not change anything about what and who Benji already is, it just gives you a direction for what techniques will help him the best. Lukas is also diagnosed with high functioning ASD. I have actually not spent a great deal of time thinking about this, because when he was diagnosed, so many of the symptoms overlap with ADHD, so I wasn’t really sure at the time if the ASD diagnosis was right. I did accept the label with some degree of thankfulness, though, knowing that it would allow him to continue to receive services at school no matter what. I am gradually realizing more and more that the ASD diagnosis makes sense and is correct for him…(hand-flapping, difficulty with eye contact, awkward social behaviors and lack of appropriate responses). Maybe you remember back in the day at Kids Cove how he wouldn’t go on the equipment if any other kids were on it. He has made a lot of improvement over the years and seeks out friendships now and enjoys playing with others. It is easier to have a 2 way conversation. People that know him are usually surprised to hear that he is in the spectrum. Take heart; Benji will have a wonderful life and the supports you are putting in place will help all of you. We should get together some morning when Erik is in preschool ( he goes M-F). You are not alone.

    • Laurel, thank you so much for your kind note. Hearing about your experiences really helps me. I am thankful for this diagnosis but I am grieving as well. I really appreciate your thoughtful comfort.

  4. […] We need to tackle the ASD issues head on. We have a few more evaluations to do, and he will be starting therapy soon. While Benji is doing great in school, he tends to fall apart once he gets home. I think it’s because he tries so hard during the day and then his brave resolve dissolves at the end of the school day, bless his heart. However, this means that we usually have a really difficult time after school. In recent weeks, I have been in tears after homework time almost every single day. […]

  5. […] many) classes online—while being a mother of four, especially this summer Potty training Silas Benji’s Autism diagnosis Eli’s 3 month long ear infection Daily 3 year old tantrums Eli’s ear tubes surgery Emailing, […]

  6. Lucy

    You may want to check out the “Ask an Autistic” YouTube videos by Amythest Schaber. They give great information about autism from an autistic adult perspective.

  7. […] Top 5 posts (most views) Day 3: Writing the Letter: Pressing for Testing (235 views) Day 6: The pieces of SPD or How I Learned to Hug my Son (279 views) Day 7: The day people stared and I didn’t care (243 views) Day 29: Getting Answers: The Child Study, The Decision (256 views) Day 30: A New Journey: Our ASD Diagnosis (405 views) […]

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