01 September 2015

The Diagnosis

If you have been reading here for a while, then you probably know a little bit about the "developmental delays" that our oldest son, Bennett, struggles with. We knew from an early age that there was something different and unique about Bennett.

It's been a very long road of questions, confusion, assessments, appointments, wait lists, more evaluations, a lot of frustration, and more appointments. But we finally have an answer now. In a follow up appointment with the psychologist the other day, we were given a diagnosis.

Autism Spectrum Disorder.
Autism is a neurodevelopmental disorder characterized by impaired social interaction, verbal and non-verbal communication, and restricted and repetitive behavior.

I'll be honest, we have been preparing for this possible outcome for a long time. But because Bennett is high functioning and doesn't outwardly exhibit several of the classic symptoms of Autism, it has actually been very hard to pinpoint exactly what is going on. But it's surreal to actually have the diagnosis now. My son is on the Autism Spectrum.


I'm hoping I can be totally candid here, because I just have a million things running through my mind right now. I'm worried, like a lot. Not for me, or for our family, because I know we'll be just fine. But I'm worried about Bennett. I'm a little bit worried for his future. How will this affect him in school? How will this change the dynamic with his friends as he gets older? Will he be able to learn and function as an average adult? I just don't know. I don't want him to get "labeled". I'm afraid that people and his peers will treat him differently. He already struggles to interact socially with other kids, I just don't want this to be something that defines him. He's so much more than this. :-(

On the plus side, this diagnosis will help him to qualify for more services, that will only aid in his growth and progression. And now we have a path to follow, and resources at our disposal.

I'll tell you what, though.

This doesn't change anything with us. I LOVE this boy more and more every day. If anything, I love him more now. He teaches ME things I didn't even know I needed to learn. And yes, we'll have struggles and probably some really challenging times, but I know that he's exactly the way he's supposed to be. ❤

I actually had to think long and hard about how open I wanted to be about this. I mean, my son isn't quite old enough or at a point where he can decide for himself how much of his personal story he wants me to share. But ultimately, I have realized that children with special needs NEED to be talked about, their stories are important. They are important. I will always advocate for my son, and if I can help to shed some light and awareness, even a little bit, then it's all worth it.

There is nothing to be ashamed about. And I don't want to be hush hush about the fact that he's on the Autism Spectrum. If I were to be quiet about it, he may feel that there is something wrong with him. And there is absolutely nothing wrong with him. I want him to grow up and be proud of who he is.

Because I am so proud of him.


15 comments:

Kate Unger said...

Mandy, I'm glad you finally know what's going on. I wish you all the best as you learn more and adjust to this diagnosis. Both your boys are so beautiful!

Mackenzies Momma said...

My daughter is also on the spectrum (though her diagnosis is a little fuzzier, yay for girls). It is an amazing road to travel. She has taught me so much about the world around me and I've (hopefully) become a better mama because of her diagnosis. There are SO many resources to help him succeed as he grows. If you ever want to talk to someone who's 'been there' I'm willing to listen and help guide with what knowledge I have (I've been VERY lucky to have some great moms help me along our path).

Amber Brunner said...

I can tell from your blog that you are a great mother! He will be fine and thrive, I know you'll make sure of it! :)

Andie Zimmerman said...

My son, Liam, has ASD and is high functioning as well. It's a long road. Liam's "different" behavior kicked in ten fold when he turned four. He was diagnosed at the age of five. He's six now. We have IEP meetings at school. You should have some help there, too. Keep your head up. Our babies are special and given to us for a very good reason!

Jennifer Street said...
This comment has been removed by the author.
Jennifer Street said...

Oh Mandi, your post brought tears to my eyes because we went through the very same thing a year an a half ago with my oldest. I wrote a very similar post then :) All the raw feelings from the beginning surfaced but you will see a world of difference in sweet Bennett when he gets support and services he now qualifies for. It's amazing the progress my Dallas has made in the last year! I 100% understand all the fears and unknows that go along with this bu it's so relieving to have an answer and some direction. If you ever need to chat or vent or anything feel free to email me, seriously :) jenniferastreet at gmail.com us autism mommies gotta stick together.

Alyson McMahon said...

He's lucky to have such awesome parents. We have a few friends with kids who are on the spectrum and I can tell you that all of them are amazing kids!! They function really well in society, at school, etc. I have no doubt that you'll always advocate for the best for Bennett, which will help him along the way. Hugs & lots of luck! xo

Amber Gregory said...

I JUST read this article this morning. I think you'll like it! http://www.vox.com/2015/8/31/9233295/autism-rights-kanner-asperger

rachel said...

Bennett is, always has been, and always will be perfect <3

Miss Angie said...

You're a great momma!

Gina Nichols said...

Thank you for sharing your story, I know it wasn't easy. As a mama, my heart goes out to you! I hope this diagnosis brings much needed relief, understanding, and most of all, the proper support for Bennett! He sounds like an amazing kid, and you are an amazing mom!

Ashleigh Wright said...

This was written so beautifully. I've worked with children on the spectrum for over 10 years and feel like how the parents address their child's diagnosis is such a major part of their success! Your son is so lucky to have you as his mother, really! Thank you for sharing your story and your struggle.

Sweet As Boys said...

Sweet boy! I've been following your blog since you posted about the darling hand print Christmas ornament and I always tell you how my sweet Rawley follows Bennett's story EXACTLY. We are in our last year of developmental preschool before he heads to Kinder {and I might even hold him back another year}, but we are now starting talks of a developmental delay for him. May I ask you what tests you got for him and how you even got the process started? Was it by recommendations from his teachers? Rawley's IEP meeting most likely will be moving up so we can discuss his needs that need to be met for his transition to Kindergarten, but I want to be prepared to move forward with much needed tests I feel we will be needing to get for him. Bennett's timeline and Rawley's timeline has been the exact same and I've always had a hunch that this what we will be doing for Rawley.

I'm just so thrilled you have been able to get answers for Bennett. It will only him and you getting the help he needs to thrive and the tools you need to help him succeed. Thank you so much for sharing your story and telling it so beautifully. I know my mind is still all jumbled with how to explain Rawley and my feelings about it at the same time. ;)

Molly said...

Welcome to the family, friend! I highly recommend reading blogs written by autistic adults/talking to autistic adults. They are immensely helpful and smart. Also love Diary of A Mom and she has a great facebook community.

Molly said...

Mandy, thank you for opening up about this. Bennett will do fine because he has you guys for parents! You will stand up for him and believe in him :)