Autistic is a bad word in our house. At least, for Dan it is. I feel like I have to walk around on eggshells when it comes to Ryan, because Dan is vehemently in denial about there being anything wrong with Ryan, beyond a few developmental delays that he’ll get over. I get dirty looks and mean, argumentative comments from Dan if he hears me say the word autism, or autistic. I don’t often blog about Ryan being autistic, and the resulting issues and my own emotions and feelings regarding everything, because Dan will read the entry, then come home and jump all over me for talking about it, making out something that’s not there, painting a picture of something totally inaccurate, and so on and so forth. It turns into an argument, and my stress and upset over Ryan BEING Ryan gets a nice helping of hurt, anger and frustration dumped all over it, and it isn’t easy or healthy to deal with. So I try to avoid it.
Some days I feel like screaming at him (Dan) about having his head in the sand. Other days, like today, I just want to be flippant and sarcastic. Sure, developmental delays. You keep calling them that, and I’ll keep trying to keep Ryan from having meltdowns at holiday get togethers, avoiding invitations to birthday parties because there will be too much stimulation, finding stylists that can cut the hair of a wriggling, fussing toddler just the right way so that the bald spot on the back of his head won’t show through, and generally rearrange how we deal with everyday life because Ryan can’t handle a lot of normal things.
Oh yeah, and Ryan is back to rocking again. The moment he gets up, after eating, when he’s bored or frustrated or tired, all throughout his naps (instead of napping), and at night before passing out on the floor. In addition to the bald spot returning, the callous on his spine is back, and I’m sure that I’ll be finding more onesies and thinner shirts with holes worn through the back because of the pressure of the callous wearing through the material.
Ryan IS talking a bit more — we have hi, hello (heh-wo), hi daddy, cereal (seh-wuel), no, oh no, uh oh and ouch pretty consistently. He’s imitating a lot, too. Each day we run through a bit list of words with him, and add more to the mix. Mommy, Daddy, Lissy, Leah, cat, dog, woof-woof, meow, choo-choo train, Blue’s Clues, Steve, Joe, nummy, and a few others I’m not thinking of.
Dan jumps on every single one of these milestones as proof that there’s absolutely nothing wrong with Ryan. Since, you know, an autistic child is nothing more than a lump that never develops, that it’s an all or nothing thing. And that the increased attempts at communication and imitation from Ryan somehow negate or cancel out his sensory issues, the spacing out, how he loves motion, how he can’t handle a lack of it, how he needs movement and rocking to soothe him, how he can’t handle stimulation in the form of too many people (read: more than Dan, Alyssa and myself) or too much noise, and whatever other issues that will certainly crop up in the coming months and years.
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See, I meant to blog about Thanksgiving. But then I thought about how Ryan couldn’t handle the commotion there (truthfully, it wasn’t that loud. There were eighteen of us altogether, and we were split into two groups for eating — the thirty and up crowd in the dining room, and the under thirty/”kids” in the living room. And the only kids present were Alyssa, Ryan, and Dan’s aunt’s sister’s autistic/Aspergers twelve year old daughter), and off I went on my little tangent.
Thanksgiving was nice. We were going to do a Thanksgiving lunch here with my mother and grandfather, and then go to Dan’s aunt’s house for Thanksgiving dinner. But my grandfather wasn’t able to come, and my mom said there was no point in going to such work and making so much food for just her. I called on Thursday afternoon to invite her to Thanksgiving dinner with us, but she didn’t pick up the phone or call back. Honestly, I was relieved, given all the tension and stress between her, Dan and myself. I felt bad that we didn’t do lunch here, which was why I invited her to Thanksgiving dinner with us. But in some ways I’m glad she didn’t come with us. And hey, I’m off the hook in terms of guilt, because I DID extend the invitation.
Some photos from Thanksgiving:
Black Friday… blech. I didn’t participate in the madness that contributed to the death of a Walmart employee. I don’t do Black Friday. I’m not risking life and limb, literally, for a few sales. Dan and I stayed in until later Friday evening, and then we only went out because the power went out (some idiot rammed his car into a telephone pole, which resulted in knocking out the power to half the neighborhood), and because we kind of wanted to do some shopping. We went to the mall and then to Target. Traffic and crowds weren’t too bad, though Ryan didn’t handle the loudness of the mall very well. He wasn’t much better in Target. It was a relief to get him home and in bed!
Saturday and Sunday have been incredibly lazy days for the four of us. Dan worked Saturday but came home early because he’s sick, and he worked tonight. Me? I didn’t do much of anything.
On Friday we did some decorating, and then some more on Saturday. This is the earliest we have EVER decorated. Oh, and I have all of our Christmas cards for family, Ryan’s therapist, some of Dan’s co-workers and family friends all ready to go! I’m really on a roll this year. Normally we don’t get the decorations up and cards out in the mail until the middle of December!
Okay, enough with blogging! Right now I need to finish up Photography Girls, and then hopefully come up with a December/winter/Christmas layout for jenn.nu!
It really sounds like you had a nice Thanksgiving with your family and friends. I am still surprised at hearing about the Wal-Mart employee who died because of the crowd! That is just insane!
I think with the whole Autism and denial thing going on is perfectly normal. Yes some developmental delays occur, and with early intervention things can get better. Don’t argue with Dan over the “label” and dont use the “label” as an excuse either. I’m sure you are doing everything you can do deal help Ryan developmentally and that is all you really can do. I know of many amazing children who are apart of the Autism spectrum. It is such a huge spectrum, the whole “umbrella” there are some children who are “text book” autistic, while others are very high functioning – and nearly the opposite of typical “symptoms/behaviours” of autism… Just keep on the therapists with Ryan and be very involved in treatment as a family… that is all I can really recommend and suggest.
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Being in denial isn’t healthy for anyone. If he doesn’t think it’s a correct diagnosis then he needs to seek out a second opinion. HIS insecurities with this situation are going to add stress and grief to you, and eventually Ryan and Alyssa in the future. Honestly, I think you have it down Jenn.
I love your curtain lights. They are so nice!! Cant wait to see you guys friday!!
Hey Jenn – there’s an awesome article I just read that gives a little bit of hope:
http://www.google.com/hostednews/canadianpress/article/ALeqM5ibQaYOErULcoQpR-6L6rHqRYvVvQ
I can only imagine how frustrating Dan must be making this for you. However, I
m glad you enjoyed Thanskgiving and alyssa’s dress is so cute!
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You know, it might take a few years, but Dan is going to have to admit to himself that Ryan is autistic AND THERE IS NOTHING WRONG WITH IT. It seems like he has a sort of stigma towards autism, but he has to overcome it. It doesn’t mean he has to love his son any less, because Ryan will always be Ryan, and he’s a great kid and nothing will change about him if Dan just admits that his son is autistic and that it’s ok.
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(Long time reader, but I don’t think I’ve ever commented!)
I work with autistic children and over the years I’ve never once seen one child being the same as another. He really needs to understand there is SUCH A HUGE range (I can’t emphasize that enough) of behaviours and issues and personalities and language in autism. Ryan is already very lucky if he can speak some words and communicate.
I wish you the best! And I hope that Dan will eventually come to accept and deal with the way things are.
I have been working with some autistic children at the middle school I’ve been working at and I must say they are some of the most amazing people I’ve ever met, not to mention smart and witty in some aspects. Sure, some things may not develop like other kids, but autism is nothing to be ashamed of. It is a really hard thing to try and accept for a parent, I’m sure, but acceptance is key in helping the child. I know that it must be hard for you and Dan, but I am sure things will work out hun.
I’m glad you guys had a lovely Thanksgiving. Beautiful pictures, as always, and I love the decorations.
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I could have sworn I wrote a reply for this – did I? Am I imagining things? Did I mark it as private? Yikes, was it so laced with grammatical and spelling errors that it was removed due to nobody figuring out what it says? – Oh well. When I have time I will rewrite it.
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Great photos! I love the snow flakes hanging across the window
I don’t have any experience or advice about autism but I know that you’ll both do what’s right for that gorgeous little boy 
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