19 August 2014

An update on Bennett's development

I've been very open and honest about Bennett's developmental delays. Because 1) there is absolutely no shame in it. He's an amazing little boy, and these are just a few bumps in the road, but they are a part of his journey, so they are important. And 2) because there are others that are going through the same thing, and I know first hand how alone you can feel when you are going through these challenges with your kids. If I can offer even a little bit of support or encouragement to people in similar stages of life -- how could I not share about our experience?


Bennett's doctor has kind of gone back & forth over the past couple of years, trying to decide if Bennett's developmental delays were more serious then just a simple "delay." When he was around 3 y/o, there was talk of the possibility of Autism. But we decided to wait it out for a bit because his "symptoms' weren't severe and there was a hope that he'd grow through the delays and come out the other side with flying colors. For his 4 Year appointment, she wasn't convinced it was Autism anymore, because a lot of the classic symptoms weren't there. So, honestly, I just kind of let it go for a bit.

But the past few months, as he's been interacting and spending more time around other kids, I feel that it's become more apparent that there could be something more going on. We recently had an appointment with a new doctor, who agreed and gave us a referral for a developmental/pediatric psychologist. Luckily, if he does land on the Autism Spectrum, it will most likely show that he's on the super high functioning end of it. Which is awesome, but I would still like to know one way other the other. Only thing is that we have to wait FOUR months to get in to see the psychologist because of the wait list. Ugh.

I have a lot of mixed emotions. On the one hand, it breaks my heart to think that Bennett could be diagnosed with Autism. Not because there is anything wrong with him, or we can't handle it, or because it will change anything in our family. But because I hate labels and the stigma that goes a lot with it. I don't want that to affect him negatively. I don't want him treated differently or poorly (by other kids) because of this "label." You know? But on the other hand, an official diagnosis will be so beneficial for him, because he'll have access to the assistance and therapies that he will need to help him progress.


Regardless of the outcome, it won't change a thing. He's still one of the most incredible little boys I've ever seen. He's kind, caring and thoughtful and still has a heart of gold. We'll weather whatever storms come our way and we'll be just fine. Better than fine, actually.

I will continue to keep updating about this, because someone needs to. People are too hush hush about these kinds of things and instead of silence, there needs to be more support.

11 comments:

Miranda L. said...

We are in the same boat. Our 3 year old daughter has been having some issues, and when we brought it up with our Dr he wasn't convinced as she wasn't showing other classic signs. Well this past year has been rough and we're still not convinced something isn't wrong. So we'll be pushing her Dr to look further into it and ask to see a specialist. As much as we don't want a label, we want to be able to help her in the best way possible. It is beyond hard watching them struggle. Thanks for be so open about this!

Jess Beer said...

This is pretty much exactly how it happened with my sister. When she was little, she went through all the developmental delay labels, and it wasn't until late middle school/early high school that she landed on the Asperger's label. It's hard. On one hand, you want them to just be themselves, but on the other hand, you want them to have access to everything they need. I really come out on the end that the earlier you can diagnose, the better - it gets kids the services they need sooner. Good luck with the wait! Four months is a long time!

Stephanie Clark said...

This has nothing to do with your post.. I'll get to that in a minute. He looks SO much like you in that first picture. There's something about his smile and eyes that I don't think I've noticed before! I always thought he looked like your husband. Anyway, I'm so glad you are sharing this! God chose him for this journey and he was formed in his imagine. He knew him before he was him and chose you to be his mom, his advocate, his protector and his encourager!

JenniferAStreet said...

Oh friend I know your feelings oh too well. My oldest son was diagnosed this past February. We just got a therapist working with him a few weeks ago and have already seen so much improvement. His doctors for the longest time didn't want to put that label near him but we always felt in the back of our mind that there was something more than just a speech delay. We noticed it even more when we see how different his little brother is about things. It's not the easiest journey to have to face and I admit there were a lot of tears but we do what we need for those kiddos because they deserve it. My son is high functioning and I still lay awake at night worried about how other kids will treat him because they can be so mean. Hang in there and feel free to reach out to me anytime. I also have written about Dallas' journey on my blog JenAStreet.com :)

mollyhopp said...
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ADSchill said...

This kid really is amazing. He may have some struggles ahead but he has such love and support that I think he will find every way to flourish. I work with many people labeled autistic and the spectrum is huge! Some of those people can light up a room, let me tell you.
I am also so happy to see you sharing your experience and providing support to those who don't know how to reach out or need someone to relate to. I feel the same way about infertility and baby loss/miscarriage. There needs to be awareness.

mollyhopp said...
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Laura Railing said...

No matter what Mandy, he has amazing parents that love him no matter what medical diagnosis he ends up with. He's going to go far in life, no matter what that looks like, and *thank you* for writing about your journey as a parent with him!! I feel like you do it in a way that is very respectful of what older Bennett would think too! Each parent's decision is theirs to make with their kids and what they share, but I think you write tastefully not disclosing things that he will hate you for later ;-) You're a great mom Mandy! B is so lucky! And, what an incredible blessing in that sweet boy!!

gazingin said...

My oldest son was diagnosed with being an Aspie once he was in school. I only had him properly diagnosed so he could receive help through the school (speech therapy for example). His diagnosis is NOT in his medical charts though - it was done by Children's, but the school paid for it (We are in Tahoma SD). I did this to avoid his being labeled later on (such as not being able to serve in the military if he wanted).
A diagnosis can be a good thing - to get help, to protect and so on. My oldest is now 16. My youngest who is 2 1/2 doesn't talk much but I wait - I don't see the signs of my oldest. It can be very hard to wait and watch, feel for you!

Amanda Jillian B said...

So far AJ has a diagnosis of Asperger's which is a crock but his father pushed for it, and ADHD well not officially the doctor was just calling it hyperactivity. Here in NY they don't need an official diagnosis till kindergarten to get help AJ just had to undergo evaluation and they deemed him in need of help for pre-k.

Rj and Jessie said...

Brayden may also be autistic. His teachers and many others think so. He refused to speak to the speech therapist. I'm also afraid of the label. :(