It's Official (ASD dx)

Junebug060609

DS was dx'd with mild to moderate autism. Expected, and honestly a bit of a relief bc it opens doors for therapy for him, but still a blow to hear.

Junebug060609

-auntie- said:

It doesn't matter how prepared you were, it still sucks when they make it official.

How are you doing?

. Mostly ok. A few tears when he was down for nap (or should i say jumping in his crib?). Honestly, i am doing a helluva lot better than the last dev eval where we had the a-bomb dropped unexpectedly.

typeset

Oh, hon. 

Always here if you want to talk. 

kcisthebombdotcom

((Hugs)) i know exactly what you mean about feeling relief over having a name of what you're dealing with to help with a treatment plan.

Junebug060609

KC_13 said:

((Hugs)) i know exactly what you mean about feeling relief over having a name of what you're dealing with to help with a treatment plan.

Definetly.

I have to confess to you guys that when he went on a stimming bender this afternoon I had to take a mommy time-out to pull myself together. Not a good day for one of those.

Lots of super fun calls to make tomorrow...like telling all three sets of our parents (little bothered none of them have called today to see how it went, all three were told the date) and our siblings. Particularly one insensitive SIL (the one who went on and on about how it affected her to hear the news D might be autistic vía my parents rather than from me...yeah sorry, I was having anxiety at time if I said or heard the word autism. Grr.)

SantoriniSteph

It is never easy to hear, even when you know it's coming.  We got the ASD dx a little over a year ago, and I still sometimes need to take a deep breath during a stimming bender or otherwise.  It gets easier but sometimes it will just hit you out of the blue.  It is still hard for me to see kids his age having full conversations with their moms (DS is non-verbal).  It's ok to feel this way, just try to focus on doing what you can for your DS.

mommy0411

Big hugs! Diagnosis day is really tough! That is my sons diagnosis as well and he is doing amazingly well! These kids have so much potential to learn with the right therapies! Also I emailed everyone in our family to tell them about the diagnosis. I found it a lot easier to lay it all out and explain what it meant once rather then repeating my self over and over. And I could take some of emotions out of the process. I hope your family is supportive! I have a SIL like that too. She likes to tell me how worried she is about her how perfectly NT twins are developing just so I have to explain how different DS1 was and explain how DS2 is behind as well.

Junebug060609

@mommy0411 I wasn't planning on calling everyone.  I guess my wording was poor above.  I want to call our parents.  I feel like hearing their grandbaby officially has autism is something they should hear from me rather than via email.  Phone will have to do since they are 500+ miles away.  The siblings and their spouses, especially that SIL, they will be finding out via email for sure.  I just don't have it in me to repeat the news that many times.    

kcisthebombdotcom

Honestly i haven't told a lot of.people yet. both sets of parents knew within the week. most everyone else I'm kind of telling as it comes up. I'm also sure parents and ils have helped with spreading the news.

d.f

It's hard hearing it out right even when it is sort of a relief. Take as much time as you need before telling whoever you want to tell.

A2TP

It's a hard thing to hear, even when you are half hoping to hear it so you can get services. Just remember he's the same kid he was before this label.

Tell people as you are ready. Aside from those we were relying on for childcare help during follow up meetings, we didn't talk to anyone about it for a few weeks. Not because it was a secret or we didn't want them to know but because I needed to be in a certain headspace to deal with sharing the news/educating and all my bandwidth was taken up by more pressing matters. After dealing with my kids all day, making phone calls about therapy and reading up on whatever I needed more info on -- the last thing I wanted to do was sit down and call someone and do an "autism presentation" for them. This is totally a put on your own oxygen mask first situation.

lite-bright

Big hugs. I found Autism Speaks' 100 day kit a very practical starting point for that first couple of months post-dx. 

It's not easy even when you're pretty sure it's coming. Remember we're here for questions or venting!

Junebug060609

Thank you guys for all the kind words. Sorry I have been so spotty. Along with all the ASD stuff (our parents have been called, siblings emailed, EI notified of the dx...and more), I have had a double ear infection of my own (ds is just getting over the same) and just haven't been up for much posting.

Telling the parents went pretty well. They all knew it was a possibility after the last assessment, and they all were so supportive. I have heard back from most of the siblings, and they have also been good with it. Some were surprised (they see him really infrequently) and some had lots of questions, but all that have responded have also been supportive.

More steps to get D additional help happen this week (paper pushing, I have to sign stuff). Trying to focus on what this can bring for help for him. I will confess though I have had moments when he is going on a stimming bender that I get angry at the Universe for giving him these extra challenges.

malcivar

{{hugs}}

That's where we're heading too.  Official - on paper - the whole bit. Even though we've had him eval'd by 2 child psychs and they both concurred that their opinion was that he was in the mild to moderate range and indicated when he was older (now) we'd need to see an MD to make it official. 

We don't disagree and our 1st appt is on Monday with a pediatric neurologist. Not really in denial anymore.  I had my a-bomb cry already.  Like you said, you're ready for it, you're expecting it, but it still packs a wallop.

Family's weird.  Both sets of grandparents have experience with SN kids.  Mine because of my sister and DH's because of his brother (Aspergers) so they're supportive but sometimes a teensy bit judgmental since we don't do certain things they did once upon a time when they were in our shoes.  

A couple of friends know and have been supportive.  They haven't tried to 'understand' because thankfully they get that they never really will 'understand'.  But they're welcoming of Chris and think he's adorable.

But yay!!  Happy that you're in a better place in terms of getting services and help for your little guy.  Best of luck with everything.

myschlove

How old is your son? I know from me, it's very encouraging to know that you're not alone. My DS was diagnosed with mild ASD in December. He is now 27 mo old, and I'm currently 27 weeks pregnant with another little boy. Which does add to the emotion of it all. when we got our news it was not something I was prepared for or relieved by. I was angry and sad, and still am at times!

One of the best things that I've heard consistently is early intervention is the number one best thing to do and so that's what we're doing with our DS and I can already see so many positive improvements in his communication in just a short amount of time!

you can choose when and how to tell people, at your own pase! you will have lots of people coming out of the woodwork with limited understanding of what that means for your child and some good advice and some not so good.... The best quote I've heard about this is "if you've met one child with autism you've met one child with autism"
This affects every child differently and just because one person knows someone who's child is "this way or that way", that doesn't mean that your child will be!

I chose to go ahead and put our announcement on Facebook after telling my parents. I took time to choose my words wisely so that I could say what I wanted to say in a positive way. It's not something that I want to hide but it's also not something I want to dwell on either! I'd like to share my post with you, and I hope it helps to know you're not alone in this!

"As some of you may know, for the past few months we've had Jacob in speech therapy. Because of those delays and other little observations we decided to have him evaluated at Vanderbilt. We went in yesterday and left with a diagnosis. Jacob was diagnosed with ASD which stands for Autism Spectrum Disorder. Its important to understand that the Autism Spectrum is incredibly broad and covers both mild and severe cases. Jacob is mild and we have every confidence that this diagnosis will only help us understand how his little mind works and give us the tools we need to help him learn and grow. Every child with this diagnosis is different and unique, just as every child is unique. This does not change all of the wonderful things we love about our Jacob. We ask that our family and friends continue to show Jacob the same love and attention that you have always shown him. We ask for prayers for Jacob that we are able to get him the appropriate help and that he thrives as he continues to grow and learn. Lastly, we ask for prayers for Chad and I, that we are able to process the overwhelming amount of information and find what Jacob needs, so that we can take the best care of our little sweet!"

Junebug060609

@myschlove. DS is 27 mos, 28 mos next week. I am 25 weeks pg myself, little girl this time.

I had some warning about the dx. The A-bomb was dropped on me last June (he was a day shy of 21 mos). It felt like the world stopped spinning and the air got sucked out of the room. To say I had a hard time with it would be an understatement. Thankfully I am in a much better place to hear it now. I have a greater understanding of ASD and just how broad the spectrum is. I am seeing improvements in DS (at 21 mos he was still regressing).

I shared his dx with our parents, siblings and some close friends. Thankfully those who have responded have been supportive. I have also found myself being more open on FB since the dx. Not in posting a status like yours, but in putting up certain videos and photos of him. Ones in which it is obvious he has delays given he is doing things in them that I am saying are new and awesome that a typical kid would have done 10 months ago. It actually is kind of liberating. (I have been posting pics and such of him allalong, but not ones in which his differences were obvious. I just wasn't ready for the questions until now).

coffee bean

I felt the same way when we got the official diagnosis.  I will also never forget when the 'A-Bomb' got dropped on me like a hammer out of nowhere for what I thought was going to be a speech eval, when my daughter was 3.

Hang in there.