Why does my brain get it but my heart doesn't.

Post Reply New Topic

I knew my son had autism for more than a year before his officials diagnosis, so when he was diagnosed I really just wanted them to write the report up and make it official so I could put him on wait lists for services.
But when I first really realized he had autism, which I was already convinced of by the time he was 15 months old, it was really, really hard. I was an emotional wreck for months. I was worrying about his future, who would take care of him, would he have someone who loved him after I'm gone, would he be happy. For a couple months I broke down in tears almost every day, often several times a day. I had to mourn the idea I had built up of having a typical child. I knew he was the same son he had always been, who I had always loved, but I hadn't always known that he wouldn't develop in the same way most children would. Like you, I felt like the child I knew had died and been replaced by this stranger with autism. I was angry with him, as though he had replaced the typical child I expected to have.
Once my heart accepted it, it didn't seem like such a horrible thing anymore. I don't really see him as a child with autism, I just see him as my child who develops in his own unique way, following his own unique path. And I don't feel sorry for him anymore or consider autism to be a horrible thing that happened to him. Everyone has struggles, he's no different in that regard. His set of struggles just happens to have a name. It's also come with amazing gifts. I completely understand now when they say that if you wish your child did not have autism, it's because you wish your child didn't exist and you could have a different child. Because my son didn't catch autism, it is a fundamental part of who he is. And althought I wish life wasn't such a struggle for him, I am so grateful for the person he is, and if you took his autism away, who he is would be gone as well, I would lose my son. It's funny because 2 years ago I felt like I had lost my true son to autism, and now i realise if you took his autism away I would lose my son, complete 180!
So you see, it's okay to be devastated now, but you will not always feel this way. Our emotions and our logic are located in seperate regions of our brains, so it is very common for your emotions to completely ignore your logical thoughts. And our emotions don't like when the plans we've made or the future we've dreamed of changes. Give it time. It's okay to be sad. It doesn't make you a bad parent, it makes you human.

Yes.

For me, my daughter--the younger one--was diagnosed first, at around 2. My son--older by 4 years--was not diagnosed with anything until he was 7, though I had known since about the age of 3 that he was not like other kids. I went into his appointment fully expecting to go on a rant if I was told, yet another time, that he was a boy and that he would grow out of it. But I was not told that. I was told that he had rather severe ADHD and NVLD. I think I actually had a bit of a harder time with his initial diagnosis than with hers because on top of everything else, I had an underlying feeling of failure because of all of the years he was not getting help. While his sister was.

Even though I had gone into his diagnosis wanting to finally get an answer that fit, it was hard. With both kids. I felt both vindicated and heartbroken all at the same time. When people say "I'm so sorry" when they hear about either of my kids' diagnoses, I feel irritated as if they are saying that I should be pitied because of my kids and quite frankly, I'd chose my kids over any others. They are great kids, quirks and all. Yet at the same time, if someone says to me "Oh, my (nt) kid does that, too," I feel equally irritated because I feel like saying "You don't know the half of it, you idiot!" Because, no, my daughter's sensory issues related to eating are not "just like" your kid's picky eating habits and my son's utter social cluelessness is not like the time your kid didn't realize someone was teasing him until someone else started laughing.

And my kids are mildly impaired, so I don't know the half of it compared to families where the kids have larger challenges.

Anyway, this rambling post is to say, yes. I think most people are ambivalent in the beginning, even when you already "knew." I think that what you are experiencing is normal and I think the most important thing you can do is just allow yourself to feel the full breadth of your feelings, while ensuring that you don't get mired down in them. Things do get easier as you have more time to adjust. Hang in there.

And just a semi-related thing to share....I had always wanted a girl because I am a very "crafty" person. All kinds of crafts. And I wanted a girl to share these interests with me. When my daughter was first diagnosed, it was actually a "thing" I had to get over. I had to realize that she probably would not want to be doing these things with me (yes, I realize that could have been true of a typpie, too, but I really felt that that "dream" was "lost"). As it turns out...my daughter is a gifted artist. And as crafty as can be. Perhaps even moreso than a typical child would be. So sometimes we only think we need to adjust our dreams. And like a pp I had originally mistaken many of my son's early behaviors and abilities as signs of precociousness that would lead to great things. He will clearly not do the "great things" I had initially envisioned, but truth be told, I think the things he will actually end up doing will be greater still. Will he be president or win a Nobel Prize? No. But he has a heart that is going to change the people around him. He will leave the world and the people he knows in a better place because they knew him. What could be a greater achievement than that?

Thank you "InThisTogether".

I could have written your 2nd and 3rd paragraph...if I had the ability to express myself as well as you! I appreciate your input!

I get very irritated by people who comment too. It seems nothing anyone says feels right to me.

One friend of mine stated that AS was "mild autism". That rubbed me wrong as I replied there's no such thing as "mild autism"!

I encountered a mother of a child with AS who portrayed it as an "ugly condition" that her child was a "victim of". YIKES that really made me angry. I feel so sorry for her kid.

And the principal at the public school where my daughter was a few years ago told me not to worry because her daughter couldn't read either.

My daughter is currently very tactile sensitive on her arms and likes to wear socks on her arms with the toes cut out (yes, this sounds very strange but it keeps anything from touching the inside of her arms). It looks like arm bands. Another mom said something about that being "cute" and that even rubbed me the wrong way! She didn't mean it in any way but being nice but I wanted to say "It's not a freaking fashion statement!"

Yes, I'm a little sensitive with people's comments too. I'm getting better at this though---now I just think the retort instead of saying it out loud.

I've had people say this about my son as well - who is on the higher end of the spectrum. What exactactly is mild?? It's almost as if what we deal with is "not that big of a deal" because it's "mild". Like having a 2.5 hour meltdown over a game that was post-poned is easy.

When my son was born with a brain injury, all I kept hearing from family/friends was, "Oh, he'll be fine." Really?? My first born is bleeding in two parts of his brain. I wasn't even allowed to hold him for the first couple of days. How is that FINE?

Actually, I prefer to say that my daughter has mild autism. It is the only thing that seems to fit. She doesn't seem like any other autistic kid I have ever seen and she confuses people. I also don't want people to assume that other kids on the spectrum will be able to do the things she can. It wouldn't be fair. So "mild" seems to help people understand.

Though I do understand that there is nothing mild about some of her issues. And when she is in a full-on rage, there is nothing mild about it. And when an issue suddenly pops up out of nowhere with no warning, it doesn't seem mild.

But in general I would call her mild.

Is this a typo?

No, but I don't mean it in a negative way. Or to say she is better than other kids, or however it might sound.

She is more flexible than many kids on the spectrum and can tolerate a lot of things that other kids can't. I would never want anyone to think that other kids are "not trying hard enough" and that if they tried harder, they could be like her. She has not tried any harder than any other autistic, and I have not done more than any other parent. She just happens to be mild, so a lot of things that affect many other autistics in a much more obvious way do not affect her in the same way.

Make sense?

Ahh, ok. I had to re-read it about 6 times and very slowly LOL