What if I Haven't Learned Anything Yet….
I found this quote a while back and it has meant a lot to me. I keep coming back to it. It seems so right for my life.
There is a post that I haven’t wanted to write for a long time but I have been scared. Scared that I will get judged as Cooper’s mom. As an autism mom. As a person. And that my inbox will get flooded with hate mail. I will be ‘that’ mom that referred to autism as a box full of darnkess. But, I am going to do it anyways. Because I am crazy like that. 🙂
I didn’t ask to have an autistic son. I prayed for Cooper before I knew he was Cooper and here he is in all his glory. Standing in front of me, flapping around, watching Thomas the Train. And per the usual, eating a chocolate granola bar. His new favorite.
I used to read a lot of autism blogs. Let me rephrase that, I used to read a lot of blogs about autistic children BEFORE they were diagnosed. Which is exactly the kind of blog FindingCoopersVoice was. Now, I guess, it’s an autism blog. Although I still haven’t changed the ‘About Us’ page. I just can’t yet.
After his diagnosis I tried to start reading the ‘big’ and ‘popular’ autism blogs. I really did. I liked all the pages on Facebook and I started following all the autism people on Instagram. And you know what happened. I got freaking depressed. I probably go into Facebook once a week now. I login and 10 posts in a row are about autism and apraxia. It’s too sad for me. I either read things about really autistic kids or I see success stories that I don’t believe we will ever have.
And there is one other trend. One that I don’t have yet. And it makes me sad and angry and hate myself all at the same time.
A lot of autism moms talk about all the strength and hope their child has given them. They will say things like, “my autistic child has taught me to see the world differently.” I will look at those sentences and think, “what the F is wrong with me??” And sometimes I will even cry. Why hasn’t Cooper taught me anything? Am I the only mom that feels this way?
Especially on the bad days. Cooper has zero self-care. Zero words. Zero hobbies. Very little play. Huge sensory issues. Every meal is a struggle. There are days were every single thing is a struggle. And I will think about the moms that only talk about the good side of autism. And I will sink lower and lower and think, “I don’t know what the good side is yet.” And I will seriously wonder if I am doing something wrong.
I have actually thought at times, “Is Cooper bad at being autistic?” There are actually times when I have wished that he had repetitive behaviors. Just, so he would have a hobby.
Maybe the two of us together are bad at autism.
Don’t get me wrong, Cooper has changed me. I am completely different person. And I like to think in a good way. I look at things differently. But…has he specifically taught me something? No. Not yet. (Hangs head in shame.)
Other special needs moms have to feel this way too. Its’ not just me. And I shouldn’t feel guilty.
Somedays I feel like I can take on autism and together our little family is going to be fine. And some days I look up plane tickets and consider running away. Both are ok.
Right now, I see autism as a box full of darkness. But, it’s being given to me by the love of my life. And that makes it easier to take.
Kate honest to God it took me 2 years from when Mason was originally diagnosed until now to see a different perspective other than doom, and some days it is still a struggle. Most of the blogs you read are probably written by parents who’s children have been diagnosed for a while, and it is not so new. Just let everything happen naturally including your feelings. No one is right or wrong. Love ya! <3
I wish I had some amazingly wise words for you. But you wrote one yourself: “yet.” You will find the beauty. You are still at the very beginning of this (lifelong) journey. I think it’s especially hard when you, as the parent, are at the very beginning, with all the “experts” throwing their opinions at you, all the therapy sessions, all the running around, all the struggles that come not only just from autism, but also from a frustrated little preschooler trying desperately to become his own little person in a world that just wasn’t designed for him. It’s not all unicorns and rainbows, but you will start to see the beauty, I promise. There is nothing “wrong” with either one of you – you just need to give yourself some time and enjoy the little boy you have. Hugs.
Everyone has their own philosophy and way of coping with life’s struggles, but personally I think it’s just fine not to see the beauty in everything. Some things just plain suck. There’s no use in wallowing (usually), but there’s also no use in pretending that something so clearly hard is a gift all the time.
I do want to thank you for this post though. If there is a silver lining, maybe it’s that you can take a little comfort in knowing you’re helping moms like me…a mom with an undiagnosed non-verbal 2 year old who has proven so far totally unresponsive to speech therapy. I feel like my son is getting the medical oversight and care that he needs, but I’m lost about how to feel about it all. Posts like this help me to know that I’m not alone, even if things don’t get better.
Maybe that’s not a comfort to you at all, maybe you’re sick of being the one that helps everyone else, but I just wanted to thank you for it anyway.
Hugs friend. I didn’t know how to feel either. I promise that part will get better. I was just talking to a friend yesterday about how I would shut down for periods of time. I would literally hate myself. And then hate myself for hating myself. It just sucked. I’m better now….I’ve noticed that my Cooper sad times last longer than they used to. I think that’s because as he gets older his delays get more evident. Ugh. Again, hugs!!!
My child was diagnosed with ASD 4 months ago and I have no idea what people are referring to when they talk about the beauty of autism. I just had the worst Xmas of my life with my autistic child, we’re going bankrupt from therapy that doesn’t seem to do a damn thing, and the daily struggle with him is hell. I too think I must be doing something wrong because I can’t seem to make it work out all wonderfully like other ASD parents can. Maybe I just suck at life and parenthood and everything else, but I am drowning while everyone else seems to be celebrating how autism isn’t all that bad. Your blog gives me at least one place to feel like I’m not completely crazy. Thank you for that.
Oh honey. You are me 1 year ago. I felt like I was standing in a room screaming and no one could hear me. I also felt crazy. And hated myself. I promise it will get better. Or evolve. I have bad days all the time but it is getting better. I’m here whenever you need me.
My son is 15 and I still feel like its new. I get depressed , because I just want to know if he’s happy, I want to know if he hurts , if he knows I’d die for him , if I’m doing something he hates, that everyday I worry about the future and if I’d die how would he be without me. Ryan and I are best friends who have never had a conversation. Don’t get me wrong I know what he SOMETIMES wants you know the basic ,but I want to know what he truly wants on a deeper level. For us its gotten better , he’s really a good boy better behaved than my other 2. Just know your his world ,he to didn’t choose this , but he knows with you on his team he’ll be fine. We all long that child we never knew and apart if him is in there. Don’t give up you need each other. Patsy M
Thank you!