Friday, 23 May 2014

I don't want to be

I woke up today to a dozen or so blog posts to read, and several conversations online about being and raising autistics. There have been a few news stories and everyone has an opinion. 
Except me. I don't want to develop an opinion on any of them. 

I have reached parenting/autism information saturation. I no longer give a fuck what the latest self-advocate, researcher, parent, or organization says my kids are or should be or how I am fucking it all up. I don't even want to know if I am doing it right. I am so fucking tired of being lumped in with the willfully ignorant and delusional and deceptive, just because I have autistic kids, and talk about them.

I don't want to play anymore. I am afraid to write, afraid not to write, afraid of appearing to be apathetic or evil or just stupid. I don't want to talk to my kids therapists and teachers. I don't want to put everything I am or want to be, on hold indefinitely because my children have to be enriched, advocated for, nurtured, scheduled, accommodated.

I don't want to do therapies and work on skills and shit with my kids. I just want to be the mom and let them watch TV and jump on the trampoline and read them bedtime stories without emphasizing parts of speech and pronoun agreement. I don't want to make every moment teachable or provide educational opportunities every waking hour. 


I am just so tired of it all. I want to be a mom more like the mom my mother was. Sure it was a different time and situation and all that crap, but I don't care. I am not cut out to be a helicopter mom, to be an "attachment parent" who is involved in every aspect of their child's life. It isn't that I want to neglect them, I just want them to be able to amuse themselves, tell me when they need my attention, and generally do their thing without my input all the time. 


I know I am not supposed to want my kids to be anything but what they are, but I have to say it:  I want normal. I want average. I don't want to qualify my parenthood with "special needs". I want to send my kids out to the yard to play, or to school on the bus, or invite the neighbors kids to play without having to plan for days.

I want to bitch about my kids without being accused of not loving them. I want to notice a silly or unusual behaviour and laugh or cry without being given advice on how to address, nurture or react to it. 

 I don't want to be the caregiver of special needs children anymore. I want to be the mommy.

42 comments:

  1. Love you, sister (((YOU)))

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  2. I feel this, too. Thanks for saying it so well.

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  3. Wow. You said it all. And, very well. Thanks :)

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  4. Your post makes absolute, 100% sense. Kudos to you for saying it!

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  5. You took the words right out of my mouth.

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  6. I don't have a child with autism, and I love this post. Especially this: "I am not cut out to be a helicopter mom, to be an "attachment parent" who is involved in every aspect of their child's life." Modern mothering can be miserable.

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    1. Do most moms really enjoy micromanaging their kids' lives, do you think? There must be a happy medium somewhere.

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  7. thank you for putting into words what is floating in my head! I said something similar to my sons "team of educators" at a recent meeting with them. that I just wanted to be a mom. and the tears came when they looked at me like I was nuts for even thinking it. like I was a complaining horrible person. I have one autistic son with apraxia of speech and one son with dysgraphia. I just want to not feel like my life is on hold. lots of moms can still enjoy life without every minute being about a new research or a new toy or new therapy for their kids. I honestly don't know what to do with myself without my kids defining me. and they are amazing kids! just wish I could be with my son without the looming fear that if I hug him wrong he may bite my shoulder, or pinch me. its tough! hang in there! I know Im doing my best!

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    1. That "looming fear" and constant total vigilance just wears us down. We still get up and do our best. It just seems that we can never, ever just relax and be there. Our kids are amazing, and we love them. We just get tired.

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  8. I'm with you.My son is playing at home
    in a little swimming pool and Im just sitting reading your post.Nobody but you can describe what Im feeling.Im tired too.It doesn't mean that I don't love him or don't care.I know I can't quit this job but Many times I just need Big Break just to breath and keep going.But it helps to know im not alone.There are too many special moms out there.

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    1. Of course we love and care for our kids. It is just so wearing to have to be on all the time. And you are not alone. We all need that break, and the opportunity to take it doesn't come nearly often enough.

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  9. This is so me at the moment, I know I'll be out of the rut soon but sometimes I wish I could have a good old moan about it without something judging it and trying to advise me, all I want is someone to listen and/or empathise. I have 3 boys, one with asd and one with semantic pragmatic disorder. I feel better now just writing this :-) thank you.

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    1. Glad to hear you feel comfortable venting a little here. Most of the frustrations just are what they are, and it does help at least a bit to have someone just listen and say, "Yes, I get that." It is probably 90% of why I have this blog.

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  10. This was awesome! My thoughts exactly lately.

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  11. I also Dont have kids with any special needs but i have 2under 2 and feel exactly like that. We are made to feel guilty for every bit of parenting today! No matter what we do it will be judged. Just do it your way and ignore everyone!

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  12. You just voiced how many of us "special needs" parents feel. Thank you for this post.

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  13. I hear you loud and clear! I'm so sick of reading about attachment (that's the big issue in this house). I am tired of worrying about who my child may severely hurt if I don't do everything I can, and worrying about another child who has run away. I try to remember that everyone's needs in the family -- parents' needs, too -- need to be considered. Keep inspiring and encouraging those of us who, like you, are through with being the best parent and advocate!

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  14. Exactly!
    One of my goals this year as a teacher of special needs students was to be more "normal". My class has been much more visible around the school going out at recess, walking through the halls, joining in on whole school activities, etc. My students (all ASD and preverbal or low verbal) still do things in their own way and own time. The big difference has been in how the other students react. Many of our students now have true friends throughout the school. Even when our students are having a rough day, they are still a part of the community. One of the cool parts is that the more we accept what our students do as "normal" for them (even the repetitive behaviors, maladaptive communication attempts, etc.) the more everyone around us also accepts us "normal" and the easier it is for all of us to just be.
    Normal is good - whatever your normal is

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  15. yes! you put it so well!

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  16. yep, got that in spades here, sister! what does Jenny McCarthy call us, "Mother Warriors!"... bitch, please!

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  17. +1, I'm exhausted. One day of "normal" or "average" would be such a relief. xox Thanks for posting, you read my mind today.

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  18. I love this post.

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  19. Good for you! My eldest is high functioning and a complete gift. I've done a lot of 'therapy' myself as part of our daily interactions and refuse to take him to everything under the sun. We all need our down time. But high functioning is a world away from the stress, fear and exhaustion of a child with high needs. But regardless of how 'special needs' your child is nothing pisses me off more than other people judging parents for the choices you make. Seriously people, you take care of your child, I'll take care of mine and we'll be sweet!! The only helpful thing you can do is male me a cup of time and keep your judgements to yourself! :-)

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  20. You rock. I am here hiding on our little farm trying to ignore all of the information … and just live. Five autistic guys and me. We have a blast. We do our best to ignore everything too… and they do ignore easily, as adults. They never want to talk about autism, they want to talk about snakes, crocheting, Bionicles, and dinner. Come visit. PS there are still meltdowns, and I confess I read a lot of these blogs. Oh well.

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  21. We all deal with it differently and theres no right way so keep doing what ur doing cos ur doing great and if u wanna moan then do so

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  22. Perfectly said and so true!!!

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  23. Perfectly said and so true!!!

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  24. And this is why we are taking the summer off. No programs, no groups, no therapies. Just a 7 year old enjoying summer.

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  25. Truth! I want to have a day without thinking. A day that's just doing. Sounds like awesome on a plate.

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  26. thank you for being honest, it isnt easy. i'm also afraid to share, afraid not to. i dont like making every single day a lesson, i would love to go to the park and just let my daughter go so the other children can gravitate toward her and play endlessly.. but instead i watch like a hawk ready to pounce because i know other children are cruel to anyone who is even slightly different. i have friends and family who say things all the time.. she needs tougher skin, let her get bullied so she can defend herself because you wont always be there.. shes fine how could other kids not love her.. my own family with their you need to read to her more she should be reading by now what are her teachers doing, you need to make her eat more, you need to get her out more to meet more kids, stop overprotecting her.. than you see people ether not talk to my daughter while she is introducing herself and friendly engaging conversation, or people talk to her like she is a infant when she is cleary aware of what your saying she could just care less. i want to yell at these people and explain so much but then by the time i open my mouth i just think whats the point, they are closed minded.. ignorant why bother.. i just take my children home and tell them i love them more than anything. thank you for your post, i'm sorry i went on ranting, its been a hard week.

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  27. I have two boys who are autistic. I know that two are very hard to handle. I often have days where "I am so over it." The worst thing is no one around me can even come close to relating. I get compared to the mother of normal children, so not the same. When I am really a freakin fantastic mother of 2 autistic children, who thanks God every day that I keep it together.

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  28. I hate having to deal with the schools. I have two boys on the spectrum and the youngest boy's school is telling me that he is not autistic anymore, I have his diagnosis paperwork, while the other school is trying to give my other son detention since we run late due to meltdowns. They told me to leave earlier in the morning, and they have to hold my son accountable for his attendance. Please, He does not walk to school, take the bus to school since it is set up for the babysitter's, and he is 8 years old. He isn't allowed to drive. How can he be held responsible?

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  29. I hear you. I am not an autism Mom, she flew the coop. I am the autism granny. Our beautiful boy will be 13 in July and I also have had my fill of schools, programs, researchers, do-gooders, are there any people out there that really help? Nobody but family, and very few of them. BTW Alex can flap and watch Disney and chill here, it's his sanctuary and that's how I want to keep it. I hear you loud and clear and wish you and your family all the best.

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  30. Yep, yep, yep, yep. I was pleasantly surprised to not see SOMEONE bashing you for just being honest. Our life sucks sometimes. Going to put a link to this one as one of my new favorite posts. Hugs.

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    1. Shhhhhhh, the trolls will hear you...
      :D Glad you enjoyed the post.

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  31. I hear you, loud and clear. Now take that sentiment, times it by 2, and you will get my husband's and my dynamic. The stress is tearing us down. My teeth are on edge every time I think of the upcoming summer break. While I will be thankful not to have to do the stressful school routine, I worry about what them being home all day will bring. Sometimes my son (who is the one most affected) is fine; other days he's destructive and has multiple meltdowns. We can't just plan for a beach day or a day at the park without tons of preparation...and even then, we don't go as a family because it's just too much. I take my HF daughter out, and leave the rest at home. It sucks.

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