June 14, 2016

Autism - The Signs

I mentioned in this post that after Kase was diagnosed with autism in September I started a private blog.  I had so much going on that I just needed a place to get things off my chest.  I've since stopped writing over on that blog and (obviously) started up again on this one.  I don't want this blog to be all about autism, but because it is a big part of our lives, I do want to feel like I can talk about it and share things.  I think it's important for parents to continue to share their stories because most people that do not have a loved one with autism have no idea what it's like.  I think if we want understanding and acceptance in this crazy world that we need to share our experiences, good and bad.  I also want people to know that we are not embarrassed or ashamed of it.  I have no problem telling people that my son has autism.  I know a lot of people like to keep it to themselves, which is fine.  But I am so incredibly proud to call this amazing boy my son.

Which leads me to this post...

I am going to just be copying and pasting some of my posts from my other blog over here.  I just want to have everything all in one place.  These are my raw emotions right after his diagnosis.

I also have a Facebook page where I share stories about us, but also share lots of other autism related things.  I love having that page because I don't feel like I am blasting my personal page with autism stuff.  If people "like" my page, they know what they're going to get with my posts.  If you're interested in following along over on Facebook, you can "like" my page here.

I will not be copying all of my posts over here, but there are a couple that I just wanted to have saved on here.  This first one is "The Signs", where I share what things led us to get Kase tested.

(Written on October 10, 2015)

Let me start by saying this blog is a place for me to share my feelings and my son's story.  I may not always have the right terms for things or say things in a way that everyone agrees with.  I am not an autism expert.  Far, FAR from it actually.  I am just a mom who's son was diagnosed with autism just over a month ago.  I don't know why I feel the need to say that, but just please know that I am not perfect, I have a lot to learn, and I am just here to share my honest feelings.

Now, what made us decide to have him tested?

He was always a very happy baby and was always right on with all of the major milestones.  He did not have any signs at all from his infant days.  When he turned two, he wasn't talking much.  His big sister, who is now 4 1/2 was a late talker as well.  We were worried about her for awhile, but one day it's like it just clicked for her and she started talking really well.  She is now thriving and is advanced in many areas academically.

So with my son, we were worried but we kept saying that he'd be fine and his speech would come, just like his sister's did.  But the closer to 3 he got, we started noticing new things that he was doing that eventually led us to be concerned enough to talk to our pediatrician.

The biggest thing was he started arm flapping.  I noticed it awhile ago too, but really only once in a great while.  But then it started to be a lot more, mostly when he gets really excited.  He loves to play with balls, balloons and bubbles and those things are what cause the most arm flapping.  This is something that we felt like he should have been doing less, but instead it got much more frequent.

He also recently started walking closely to walls (or our vehicles when he's playing outside).  He will put his face close to the wall and look out of the corner of his eye.  I now know that this is called "Stimming", something I had never heard of before.

Those two things, along with the delayed speech, concerned us.  I was at the pediatrician for my baby's 4 month appointment and I brought it up to the doctor.  She told me she would put in a referral for him to see a pediatric neuropsychologist.  She didn't think we'd get in for 4-6 months.  Thankfully we were able to get in a few weeks later.

His first appointment was on August 19th, five days shy of his 3rd birthday.  It was considered a consultation, but the doctor evaluated him playing and interacting with us.  He told us that day that he thought our son seemed like he had one foot in/on the spectrum and one foot out, which is exactly how we felt.  There are so many classic autistic behaviors that he DOES NOT do.  He interacts with us, his big sister, other family members SO well.  He makes eye contact (although I learned it's not always "meaningful eye contact").  He sleeps awesome.  He doesn't have sensory issues with noises, water, certain clothing.  He likes to snuggle.  He doesn't really obsess over certain things like wheels on toys or anything.

But the few that he does do, are concerning.  We then scheduled the actual eval to be done on September 3rd.

We went from feeling pretty good about the first appointment to feeling completely overwhelmed after the second appointment.  To the point that I was crying in the office.  Although my husband and I kind of expected the diagnosis, getting it confirmed and hearing that he should have intense in-home therapy 25-30 hours a week, was a lot to handle.

Just in the last month we have noticed more things that he's doing.  But how do I know if it's something that 3 year old boys do or if it's something that we should be worried about?  Little boys do weird things, ya know?

I will do a separate post with some more detail about the evaluations and the diagnosis.  I do have to say though quickly, we are fine with the diagnosis.  The "A" word is a scary thing.  He definitely has some things that he needs help with.  And if it takes a diagnosis for him to get that help, so be it!  Thinking about the future is the hardest thing for me.  I try to take things one day at a time, but I am guilty of crying in my bed at night when I think about the hopes and dreams we had for him and his future.  Then I force myself to remember that he's only 3 and there is so much research out there showing that early intervention is key.  So although sometimes I let my mind wander, we refuse to accept a different future for our son.  We will do anything and sacrifice anything for him.

Tomorrow I will be sharing a post that my husband wrote about his feelings about our son's diagnosis.

1 comment:

  1. Amy, thank you for sharing!! This. This is exactly how I felt! I actually wrote a post or a "letter" I guess you could call it (it's a blog post though) to Mason after we got his diagnosis. A lot of what you're saying is how I was feeling too. I've been meaning to write more updates but I just haven't had the time. I can't find the right words. That letter to him though I just let the tears flow and just wrote what was in my heart. Mason is very similar to Kase in the fact that I think he too has one foot in and one foot out. They didn't give him a specific diagnosis of high or low functioning but I think he is pretty high functioning, compared to what I have heard from other parents. My husband and I went to a class held at the place that diagnosed him and we considered ourselves VERY lucky compared to some others. I wish we lived closer so we could hang out and the kids could play! They sound like they would get along so well! I can send you the link to the letter if you want to read it :)