When Your Kid Is First Diagnosed - Page 2

[Emmeline II]

Originally Posted by baltmom 

I guess I'm in the minority here. We don't have a diagnosis yet, but when we finally got to see a developmental ped and she validated all of my observations, I partly felt relief because finally someone wasn't looking at me like I was crazy, but I've also been feeling more impatient with my son than I ever have. He's 27 months, and we just saw this new doc earlier this week, and it could be coincidental, but my honest answer is that I'm feeling less connected right now and less tolerant of some very typical toddler stuff, eg whining, continuing to do something he's been asked not to, etc. The doc's reaction was not a surprise at all, and I do feel like we have something of a plan for moving forward, but for the moment anyway, that's how I'm feeling, and I'm not sure why. I hope it will pass?

I think the first reaction is usually "yay! a diagnosis/validation," then "oh, crap." Sometimes the latter has to do with actually having an identified problem to deal with, and sometimes there is a let-down due to a vague expectation that things would be "fixed" or "different" now.

[HarperRose]

Originally Posted by Emmeline II 

I think the first reaction is usually "yay! a diagnosis/validation," then "oh, crap." Sometimes the latter has to do with actually having an identified problem to deal with, and sometimes there is a let-down due to a vague expectation that things would be "fixed" or "different" now.

I would agree with this.

Side note: Emmeline - what's your child's diagnosis?

[buttercup]

When my No. 1 (daughter) was diagnosed, I felt relief because I knew she wasn't developing like her peers.  At the age of 3, we were able to dive into different interventions. 

When my No 2 (son 18 mos younger) regressed and was later diagnosed, I was upset.  Even had the team who did the evaluations explain to me what he did to score.  His autism was completely different from No. 1. At the time, I was still new to autism so I was in denial which is why I probably felt devastated and a sense of hopelessness.

As the children grew and my husband and I adapted our life around their needs, we have been content and enjoyed every min of our life.

When my No. 3 (son 4yrs younger than No.2) regressed, I was upset and felt a bit of guilt for the regression.  I closely monitored his health (he had fever induced seizures with every fluctuation of his temp - never going above 100 degrees - a couple times a month) and his development.  I saw the loss the eye contact, not responding to name, loss of language and lack of engaged social interaction.  I knew.  I knew he was on the spectrum.  I was okay with the diagnosis because in the end I knew that it really meant nothing to me.  I accept him as he is and will do everything in my power to help in develop the necessary skills to reach his fullest potential, whatever that may be.

These are my children and I will love them for who they are, what they aspire to be and when they reach their fullest potential. 

Before I had children, I only had a couple simple desires in life - Happiness and Adventure.  I am happy to say that I have fun filled adventures DAILY and I am so grateful and happy that I have been given these 3 beautiful children.

[baltmom]

Emmeline II, thank you. You really hit the nail on the head for me, and because of your reassuring words our day today has been back to our usual laughing, connected ways.

I think after the ped visit I was subconsciously trying to coach him out of some of the "concerning" behaviors, which started a very negative cycle. This unintentional focus on deficits broke our connection, which increased those behaviors, which made me more worried, which further eroded the connection, etc. Your response helped me recognize all that and let go of it, and get back to doing what I usually do which is to build on strengths and keep connection at the center of everything.

[Thing1Thing2]

Originally Posted by HarperRose 

Same here. I finally could tell people, "See? It's not parenting! It's not discipline! It's not anything else. It's NEUROLOGY." Ugh.
 

I will be so glad when we get our diagnosis for the exact same reason! And it would be nice to be able to tell myself that as well... you know, stop beating myself up every time he has a meltdown and I feel like its my fault.

[fairydoula]

We just recently received the official dx for my daughter who is 8. Aspergers.  My husband doesn't say much about it, and I don't KNOW much about it yet. It's really hard to read about, 1. because so much of it is in relation to boys and doesn't relate to her and 2. because it's so scary, not knowing what the future will be like. Will she get worse? better? always be like this?   There are very neurotypical things about her, and many people, upon first meeting her don't think there's anything wrong, but you spend a few hours with her and you start to wonder, what is different about this kid?  

 I'm a mom of 5, two older than her, and two younger and it's overwhelming and daunting and scary and there's a grief process that I'm going through, realizing that she's not "perfect" which is silly, I know, because who's perfect?   It's really hard reframing our thoughts and language. I never realized how hurtful it is to others who hear things like "not normal" and I'm reframing to say "neurotypical, or not neurotypical"  Hearing someone else try to mirror back to me what they think I just told them, and saying that my daughter isn't normal... it really hurts.   Also, the feedback from some of my family.... saying "I'm so sorry" to hear about the dx. What? Why are you SORRY? She's not dying... she just has a differently wired brain. It's not deformed or defunct... it's just different.  So... this is a process of learning and developing new sensitivities and new tools for helping her cope and learn.  But I am still dealing with feelings of anger, grief, inadequacy and frustration, as well as feeling like my patience is taxed to the max lately, with all I have to do.   It's hard too, as there is so much less information about girls with this syndrome.

[HarperRose]

Yeah, I really dislike the lack of info on girls with it. And I get the "I'm so sorry" stuff, too. Wait. Hello?? My friend's little boy has cancer. THAT is something to be sorry for. My kid isn't on the brink of death every day of his life. My kid isn't on his way to Houston today for treatment. 

Look around, get connected with aspergers and autism pages on facebook and google+ and anywhere else you can.

[Christina1003]

All of this - every single word!

I'm so dreading and looking forward to our formal diagnosis next week that I'm sick to my stomach. It will be a relief to have an actual diagnosis, and I can let go of all of the (seemingly) accusatory commentary that I'm overreacting and just wanting attention for him. Riiiiiiight.....because I want him bawling his eyes out at a hand dryer in a public bathroom. 

Originally Posted by Thing1Thing2 

I will be so glad when we get our diagnosis for the exact same reason! And it would be nice to be able to tell myself that as well... you know, stop beating myself up every time he has a meltdown and I feel like its my fault.

Originally Posted by cristeen 

I was relieved, actually.  Relieved that his tantrums and acting out, and just sheer intensity wasn't because I was a horrible mother - it actually had a cause, a name.  I had been expecting an SPD dx, not an ASD dx, so there was some shock involved, but I think I adapted far quicker than anyone else did. 

Originally Posted by HarperRose 

Yeah, I really dislike the lack of info on girls with it. And I get the "I'm so sorry" stuff, too. Wait. Hello?? My friend's little boy has cancer. THAT is something to be sorry for. My kid isn't on the brink of death every day of his life. My kid isn't on his way to Houston today for treatment. 

Look around, get connected with aspergers and autism pages on facebook and google+ and anywhere else you can.

[HarperRose]

Originally Posted by Christina1003 

All of this - every single word!

I'm so dreading and looking forward to our formal diagnosis next week that I'm sick to my stomach. It will be a relief to have an actual diagnosis, and I can let go of all of the (seemingly) accusatory commentary that I'm overreacting and just wanting attention for him. Riiiiiiight.....because I want him bawling his eyes out at a hand dryer in a public bathroom. 

Oh, I hate those damn things.  They are so freaking LOUD!