"A raw, unfiltered account of caregiver burnout in a fully neurodivergent family. When accepting their differences costs you yourself. Written on a bad day."
I wrote this back in January - On a BAD day- I want to make sure I note that I love my husband UNCONDITIONALLY- Hence 12 - MOSTLY happy years - but sometimes? It's just ... Too Much - And that's what this blog is about- It's raw- and written during an emotional moment so please don't tell me how I should be more understanding- or how selfish I feel- these are REAL - and RAW emotions- read at your own risk..
I'm sometimes pretty sure my husband has Autism and not Asperger’s. Then again? Most of the people I know are grown adults with Asperger’s? Are women.
You know what hurts? The miscommunication. The fact that what I do? Isn’t recognized very often- it’s expected. You know what else hurts? When I think I live up to those expectations and on *moment* that sends HIM dizzying into a spiral? Makes me feel like a failure.
Let me tell you this- My husband is home 1 day a week. ON that day ? He has 2 responsibilities- to help with the kids and to dry the laundry. It breaks my heart when he lashes out at me because of his own frustrations. And although I may understand the “Why” It doesn't make it any easier to accept from time to time.
Sometimes I feel so alone; like I’m the only one who is a dolphin needing air in this school of special needs fish. That may sound horrible… but it’s true! I have special needs fish- My Children, My husband- all on the spectrum and me? Fleeting ONLY BARELY above it. I admit I was so disappointed when I took an “Aspie” quiz and didn’t meet the criteria- part of me wanted to – Part of me thought? That would make me part of the group – but I’m actually the outsider in my own family.
I say things to my eldest son all the time that he tells me doesn’t make sense- and by his logic it doesn’t .. .I am kind of thankful he is older now … because since he is? He actually gives me insight into my husband. Why? Because I’ve taught him communication skills. He tells me why I don’t make sense- and then? His points are hard to argue with.
Some days are so lonely. I am trying to recreate the world into a place that my family can live- Only I want out. I want what is OUT THERE – but out there doesn’t accept THEM- so I build a bubble…. And I do what any mother and wife would, I protect them. Only I can’t protect them outside of my bubble. So I just stay here.
I stay here away from socialization- and I stay here away from what I used to love. Why? Because I love them more that’s why! But is it so much to ask… that .. maybe once? Does anyone realize that?
Maybe I am throwing a pity party for myself- and if I am it’s the first – and maybe I should throw more because you know what? I AM SICK OF IT SOMETIMES!
Think I’m a horrible person- go ahead- think that I am horrible because I want what I used to be. I think I am horrible for sticking by my family and abandoning myself- I abandoned myself to EMBRACE THEIR DIFFERENCES. I have sacrificed myself in many ways- but some days? I just want to be ME. ME. Who the hell is that anyway- I don’t even know anymore.
ME- used to be a socialite who loved to host parties.
Me- Used to be a person who loved to go out.
Me- used to be the center of attention because I put myself there.
Now I’m just the burnt on crust of the back burner that you have to buy special cleaning supplies to get off because I’m so desperately clinging to be part of the “whole picture”.
Sometimes I am just sick of BLUE’S CLUES and Dora and Team Umizoomi for my children- then I suck up Dukes and Coach and multiple others to please my husband. Sometimes I am just sick of the obsessions. Sometimes I am just SICK of ALL OF it.
Then I feel guilty – because I couldn’t live without any of it.
So why does it hurt?
Why do I feel like such an outsider in my own family from time to time?
Why am I expected to accept the differences? Love? YES! I LOVE MY CHILDREN AND MY FAMILY. But if I have to accept all their differences? What do I have to do to let it be known I’m DIFFERENT TO!?
I’m different from them – I have … a different perspective. My deep emotions come from many things as do theirs- but I have learned to understand all of theirs.. Is it so much to ask that they do the same for me? Am I a bitch for this? Am I being unreasonable?
I preach day in and day out for Autism acceptance- I say things like “Is there a CURE for Normal” – I’m not *NORMAL* Who is? But is there acceptance for that? Is there acceptance that some of us out here don’t see the world as YOU Do? Does it matter that we TRY? DOES IT?
I have changed my life step after step for my husband- and thank GOD finding out he had Asperger’s? Provided ME with some answers- I only wish he’d find AS MANY (as he has found some) Answers. Because I long for the day he can see that I’m not just “The bitch” I long for the day he can realize that not everyone sees the world from HIS eyes- as I have accepted the ENTIRE WORLD won’t see things from my eyes.
Me- the headstrong independent woman- am I now to be the “Good Girl” and swallow my pride due to his disABILITIES (Believe me when I say his abilities outnumber the DIS in that statement) – Why can’t I expect him to try to understand me the way I am working feverishly to understand him? Am I not fair? I wait on him hand and foot- serve his meals, take his plates, I know he is gone all week and works hard for us. To me? Favored meals and waiting on him shows gratitude. Yet? His mind? Don't see it that way… What am I doing wrong? Will it always be like this? I don’t have the answers- the only thing I know is that he takes care of me- and the family – not so emotionally ever- but financially for sure… I LOVE Him- I don’t DOUBT THAT- but it’s not what I thought Love would be by any means. It’s so much more work- Sometimes I just wonder … Is it worth it? Then I realize how connected we are- and how no one knows me better … and I think it is .. but is it wishful thinking? I don’t even know … 12 years. I have had a LOT of ups and downs with my husband – now it seems that Asperger’s is supposed to make it – Justifiable.. Not sure how I feel about that yet… Stay tuned.
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