Today is Thanksgiving Day in the US, and I am indeed feeling thankful. Here's some of the reasons why---
1. I live in the right time in history. In the past, Janey would not be able to go to school. We would have been blamed for her autism, or we would have been told to put her away and forget her. Or worse. Nothing is perfect, but I think of all the historical eras I could be living in, I've hit the jackpot with today's world.
2. I have a wonderful husband. Tony, I couldn't do it without you. Literally. I think I'd be dead by now. You are there when Janey wakes 10 times a night, when she screams for hours, when she cries for days. You are there for the good times, too. You make her bacon whether she eats it or not, just because she likes the process. You sing with her, recite Three Stooges with her, delight in her good moods. You are amazing.
3. By twists of luck too improbable to seem like sheer chance, Janey is attending exactly the school I would have dreampt up for her, had I been dreaming up a school in my head. The Henderson Inclusion School is something I am extremely, overwhelmingly thankful for.
4. Janey has two amazing brothers, terrific young men who love their sister, who help me with her, who have fun with her and just treat her like a sister should be treated, with teasing and laughing and fun.
5. I am so thankful for music, and for Janey's love of it. The whole day is often filled with song, surprise tracks of pieces she's heard long ago and old favorites mixed together to make a medley I love to hear.
6. Modern medicine. I have all the questions and concerns and worries about it that most of you probably share, but when it comes down to it, I wouldn't be here to have those concerns without it. I'd have died long ago from preeclampsia when pregnant with William. Tony wouldn't be here without insulin. Freddy would be here without the magnesium sulfate and skilled care that got him through a potentially deadly asthma attack as he turned eleven. And Janey, without the medications I love to hate and hate to love, would not be able to be making the strides she is, I do believe.
7. All of you, and the internet that allows us to connect. Even twenty years ago, I would be alone in this all, maybe having met one or two other families ever with autistic girls. Today, I can reach out and talk to many, many people about this tough journey, people that understand and have been there. That's pretty darn amazing.
8. And of course, I am thankful for Janey herself. Janey, you are one terrific girl. You are beautiful, fascinating, mysterious and so often, a joy. You have brought me many challenges, but you yourself, you amazing girl, you make it all worth while. I love you, Janey.
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
5 comments:
What a beautiful list! I am also thankful for the Internet, because without it I never would have come across your blog and come to know you and your wonderful family! I hope you had a nice Thanksgiving day, and I wish you all many blessings during this holiday season!
You appreciate the things that you do have, rather than being bitter about what you don't, and that is the secret of a life that you can enjoy, rather than endure.
Forgive me for being presumptuous but I do a lot of reading of autism blogs(my newly married into the family stepson is autistic and I want to understand as much as I can): I came upon one that you probably already know but which touched me greatly, much as yours does, and I wanted to share the link, just in case.
http://emmashopebook.com/
I was just reading your blog and my apologies for being so forward with my post on your recent blog post. Your daughter janey reminds me very much of age especially as a child. So it's always a refresher to find others who were or are like age. Age was very severely affected by autism but only diagnosed with intellectual disability as it was during the 80s. Wasnt diagnosed actual autism til she got older. She only ate cheez its. Chicken fingers. Bacon. Coca cola. There was no pull ups so she wet herself a lot. Was a huge biter. Head banger. Had no care for holidays except would go into fits cuz it affected her routine. Didn't flap or rock much but was a huge spinner and pacer/runner. Constantly suffered tantrums. Endless screaming fits. Never cried though. Never showed any kind of affection. Unable to dress herself or bathe herself. Hated being touched. Severe mood swings. Only spoke a few words. Extremely aggressive. Obsessed with strings or sensory related objects like a rubber pot handle or a cat toy mouse. Only wore track suits or handmade sweats cuz she would rip the others off of her. Etc.
She is now in her late twenties and we just celebrated the other day her engaging in imaginative play and bathing herself on her own in the bath. She's better though then she was as a kid except suffers from daily seizures and other health problems. She now knows who Santa is and loves to stare at him and goes into such a happy fit if he waves. Helps dye eggs on Easter. Loves her Easter baskets. Will give people hugs. Dresses her own self. Learning to cook with assistance and use the blender. Etc. She also rocks and flaps more as she got older which is weird as you can see from the videos I have below. she's still very affected by autism and always will be but we did nothing different to help her. Instead years helped and us never giving up.
Guess my post is to simply say dont ever give up hope on janey.
This is age- http://m.youtube.com/watch?feature=c4-feed-u&v=NmPkQcNRI-g
http://m.youtube.com/watch?v=HZoYAF4TRUQ&feature=c4-feed-u
Thanks so much for telling about about Age! It was a big encouragement to me to hear how well she is doing now, and how time itself (and I am sure loving parents like you!) do so much. I loved hearing how she knows Santa now, and doing Easter baskets and things like that---I've written a few times about how much I long for that with Janey. It's so great to hear about her making progress into adulthood. That is something I've been thinking about a lot lately---how there is not really the rush for time we sometimes feel like there is---that Janey has her whole life ahead of her to make progress. I really appreciate your comments and your reading of the blog!
I'm thankful the extended family got to see my daughter since she was diagnosed with ASD. She didn't disappoint expectations as she made her usual entrance of running around and touching everything. Most the breakable stuff in her grandfather's house was put out of harm's way. It was somewhat sad to see her 2 year-old little brother get most of attention from their cousins. He can interact far better and even has the ability to spontaneously recognize "Present Bama" (Obama) on TV or in a photo. I'm not sure if that's common or not. Still it was good for my daughter to make her "debut" and everyone to have a better understanding of our family's current dynamics. I think my 93 year-old father got to see a little of what we go through everyday. He saw some humor in her as my daughter taunts her grandfather by touching items while looking at him. Her swatted her with a newspaper but even that didn't deter her long from touching things.
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