A very strange sense of relief

Post Reply New Topic

I am sharing because I know there are probably very few people in the world who understand how I feel and sometimes it gets lonely.

My daughter has mild ASD and is in 2nd grade. Everyone always says what a delight she is and their first impression of her always leaves them wondering--I am sure--what kind of mother I am to say she has autism in the first place. She has come so far from where she was when she was diagnosed and now that we are in a new school, no one knows her from "back then." They only know her right now.

Well, I got a call from the school psychologist yesterday.

MAJOR, major meltdown at school. Major one.

And I can tell you, my primary feeling related to this is relief. Because now they know that I am not making it up. She really is an incredibly-well compensated 2nd grader who has very well-hidden autism. But under the right circumstances, it all boils to the surface as her ability to cope dissolves.

I think most people would find it either sad or disgusting that I am relieved this happened. But I know for those of us with high functioning or mildly impaired kids, having others finally see what we have always known feels like a locked door opening. Finally, I am certain my concerns will be seen in an entirely different light.

It is okay to feel what you feel. I myself sometimes hate that my autism is so invisible because if it weren't it would be easier to get the help and supports that I need. You just want what is best for your daughter. Don't beat yourself up over it.

Thank you, Glasstoria, and I am sorry for your struggles as I am sure they will be the struggles of my kids when they grow up. Sometimes I think people assume that if you can fly under the radar it must mean that life is easier for you. They just don't realize that you have to work very hard to be there, and people do not extend you the allowances that they would if you were not so able to blend in. Instead of being impressed by how well you are able to do, despite your wiring, all they see is how you fail to measure up to NT standards. Although I don't know that that happens to you. But it does happen with my kids.

I hear ya! DS's classroom teacher this year with a statement that she didn't want to intervene "too much" to start with. Well after multiple meltdowns in one week because she wouldn't do the simple interventions I had requested, she has seen the light. I just wish it didn't take this level of obvious suffering from our kiddos for people to get it. Hope your situation improves now that people have seen what you know to be true.

InThisTogether, I totally get where you're coming from. My daughter is very high functioning and many people, especially older folk, think she's the best thing since sliced bread. Even her autism report, which confirms the Aspergers diagnosis, says she is 'delightful' and she is. But, we have many a moment at home. Moments in school are rare (actually the teachers have never had need to speak to me after school). Whenever I've told anyone she was being assessed, I've gotten various replies, e.g. 'Really, it must be VERY mild, as she seems fine to me' or 'Oh, she's fine, all kids are like that now and again', etc. The only people other than my husband and I, who truly know how difficult she can be, are my parents. Believe me, you're only human for feeling like you do.

I know how you feel, my daughter doesnt show it much around my inlaws so they dont believe me! I sort of long for the day she really lets rip on them lol! I get comments like "shes not autistic shes lovely" No, she is both autistic AND lovely!!

Clearly you are doing everything right and she is coping well with her difficulties, so much so its not even noticable

We had a similar thing a couple of days ago when some friends saw a full on, eleven out of ten meltdown. We had the same sense of relief.
Fortunately it was greeted with the right response (after the dumbfounded holy-crap-we're-not-in-Kansas-anymore moment): "Ooooooh, THAT's what you mean. THAT's what you live with all the time". It really led to understanding. Wish I could say that about every time

No, nothing wrong with the way you feel.

It's sad that it takes something like that, but it is a great testament to your daughter's coping skills, and I think that they will serve her well in life.

Another one here. At kinder and in public DS tries really hard to 'normalise' and obviously it takes its toll. We get the brunt of it at home and there are times when I wish there would be a meltdown at school so I can say "You see!! ! We aren't paranoid first time parents trying to stick the latest fad diagnosis on our child"! !

Also, where we live in Victoria, Australia, it's not enough for a child to have a diagnosis of autism in order to get assistance, they need to either have behaviourial or emotional issues or a low IQ also. So, at the moment at kinder, because DS is so tolerant and well-behaved he doesn't qualify for any assistance. As a result, next year at school we have opted for a catholic school who are far more lenient however the funding is a lot less. Some days I want to tell him to kick the teacher

My kid is that way too. Sometimes I wish he'd melt down in front of his grandparents, who are the major doubters in our lives.

Though I'm grateful that he is so high functioning, it is a special challenge finding programs that are right for him. He doesn't always fit in special needs programs, but also struggles with mainstream ones.

I totally get that feeling. And I think it's ok. It can be very isolating to have people who don't understand what we deal with . . . the daily level of effort we put into NOT having those meltdowns happen, etc. My son is smart, sweet, funny, and at his best friendly. And yet, where he is now is because of the past 6 months of therapy and a LOT of parent reading and effort. AND an amazing effort on his part, for which I am so proud of him. He is just 5 and he has worked so hard.
And yet, the other day he punched a kid at school . . . and as terrible as it may sound, it was a reminder to me that he still needs ongoing help. And his teacher sees that too, so in some way, when he acts out and others see it, yes, it is a relief to not be seen as 'that crazy parent' who is making their 'normal' child go to therapy.

I can also understand where you're coming from. My DS8 is 90% on track in school aside from the usual mini-melts and the occasional maxi-melt.

It is hard to get some to realize that just because he doesn't seem to have issues, that he doesn't need some assistance from time to time. Fortunately, we were blessed with a first-grade teacher who's daughter has Aspergers, so she knew exactly what was going on. She gets him, she helped him tremendously. To this day she still helps him, and his now third grade teacher is more than willing to help him with whatever support he needs, including a "rescue word" for him that lets him know he needs to stop his behavior, take a few breaths, and get his bearings back since he may not be able to tell someone is getting agitated with him. She says he hasn't melted in school yet. (I know- yet) It's been a Godsend...

But I agree completely- when someone sees "it" it definitely helps getting them to understand that it's not because "your kid is a spoiled brat" or junk like that.

I even get this feeling with therapists who should have a lot of experience with autism. Recent major meltdown at the cognitive behavior therapists resulted in a look that said, "Oh, THIS is why you're here."