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(originally written & published on may 30, 2011)
I started this page because the wife didn’t like me bitching about autism on Facebook. So, of course, people had alot of questions about my wife… why she didn’t want me talking about autism on FB, how involved is she in Kyle’s schedule, etc.
Let this be the note to dispel all the rumors. 🙂
My wife is an Autism Mommy Rock Star! She is a stay at home mom because she’s accepted the fact that Kyle’s crazy schedule could never be handled PROPERLY if she were to work.
Because of this, unfortunately she lives & breathes autism 24/ 7 (where I get a 40 hour break each week at a glorious place called work).
She drives Kyle to and from school everyday. We could get busing but this is our (her) decision and the thinking is that we can’t put a non-verbal kid on the bus. You hear too many stories about non-verbal kids accidentally being left on the bus all day or worse…
She manages his schedule and arranges all his after school activities… at home ABA on Mon & Wed, Aquatics OT on Tues & Thur, and Music Therapy on Friday.
The special needs music therapy session takes place at Kyle’s school, after school and my wife single handedly made it happen. Found the program, informed the school, got some “scholarships” for some financially strapped parents, found the aides to stay after school for 30 minutes, etc, etc, etc.
So as I said, she lives and breathes autism 24/7. I feel that as a dad I help out & participate more than the average autism dad. There are SOME autism families that we hang with, go to bd parties, etc and I rarely see the dads. There’s 2 families that we’ve known and seen at events for years and I’ve yet to meet the dad.
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So maybe I’m more involved than your average autism dad. During arguments I tell the wife that I’m better than most dads and tons better than most autism dads! I say that we are a true 50/50 team. It’s probably more like 60 her / 40 me, but what she always tells me during theae argumenys is that based on hours of the day we might be a 50/50 team, but mentally the brunt of the responsibilities is on her. She is the one who has to be on standby from 840am-3pm. She is the one who will get the call from the school when Kyle has a meltdown or injures himself or almost faints from holding his breath. She is the one who handles all those emergency doctor appointments. She is the one who spends afternoons arguing with the school district.
So she is an AUTISM MOMMY! I’m just a dad who thankfully has an extremely flexible job. I work 10am-6pm most days. So I help them get ready for school in the morning and when I come home from work I kinda take over. Weekends we truly share the responsibility. And we give each other breaks. Small breaks like…”you go take a nap, I’ll handle this” or “I’ll take Kyle to gym & swim on Sun morn, you sleep in”…and BIG Breaks such as… I’m a marathon runner and 1-2x a year I’ll sneak away for a weekend to run a race in another city…..The wife has gone on a few overnights with girlfriends and this year is contemplating going to Chicago for 4 days in August with a girlfriend to see Lollapalooza (she is currently obsessed with Dave Grohl from the Foo Fighters 🙂
Then as I stated in another note (see my other FB Note entitled “A Note about Autism Daddy & the wife & how selfish we are & how we like to go out & party”) we hire sitters often so that we can go out together…
Anyway LONG story short, we kinda manage Kyle 50/50 time wise (ok 60/40 🙂 but she is right, mentally a signifiant higher percentage of the weight of the autism is on her.
So she sees Facebook as an escape. She’d gotten back in touch with friends from grade school & high school, even some ex-boyfriends! (i truly am fine with it 🙂 She’s even had mini reunions with friends she hadn’t seen in 20+ years. So as much as possible she wants to keep FB as a light and happy place. So that’s why she would get annoyed when I would write a status update complaining or ranting about something autism related
So I created AUTISM DADDYand now I get to complain and rant to all 450 of you!
I just had to write this note because I didn’t want people to think my wife wasn’t involved with Kyle or was mean for not letting her hubby use FB as an autism learning tool.
So, i said it before and I’ll say it again… MY WIFE IS AN AUTISM MOMMY ROCK STAR!!
That’s all folks! 🙂
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If you’re gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20? This way I can make a little money to help pay for my son’s after school & weekend therapies. This blogging thing has been awesome & life changing for me… but I must admit that it’s taking up a lot more time than I ever thought… so if I can make a few bucks it’ll make it easier for me to justify….Love you all! Thanks!!
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My hat goes off to her with deep respect as I know what it's like to be a stay at home mom with an autistic child that tends to take every ounce of my strength and attention on a regular basis just to keep him safe and stable. But it also goes off to you as I sadly do not know what it's like to have a husband who cares enough to help.
Mine abandoned me and our two children and wont come back. He said he loves us, but he can't stand the responsibilities and all the extra work and effort that is involved. I ended up severely disabled too (with other things) shortly after David's birth, but still shoulder all the weight of caring for David and his younger brother (who will soon be starting evaluations to see if he has Autism...)
David is thought to be somewhere around the moderate to possibly just shy of severe level. He's 4 years old, but can't seem to progress developmentally past 2 years (some areas, even younger than that...). He recently got connected to a specialist that diagnosed him with Autism but I will get more details at our next appointment she said.
Joshua is 2 and 1/2 years and is going in for evaluations as soon as the specialist finalizes her finds on David.
I wouldn't wait until they finish their finding on your oldest. The sooner the better. Our 3 1/2 yr old Joshua wasn't diagnosed until 33 months because his former pediatrician was in denial, she still is. Our youngest 19 1/2 month Daniel was just diagnosed a week ago. And it was the earliest they would do it. Best time to diagnose is before age 3. Kudos to you for even having him evaluated.Most parents I've encountered refuse to believe their youngest children
Much love and respect to both of you. We have an autistic 4 year old who can suck every bit of energy of out of us and we have a 5 month old. You guys are awesome. You are the perfect parents for Kyle. I love your blog!!! Kimberly Davis
I understand this. This is pretty much the way I feel too. My wife does most of the work, but I try to do as much as I can and be as active as possible. Very cool.
Thanks for posting this! That's how I think of my daughter too. I'm sure the "Rock Star" appreciates your contributions! And we appreciate your blog! Keep it up! Cheers, Stephen
Not that your wife's involvement in parenting or your marriage is really any of our business, but thanks for the clarification. Honestly, I figured all of this already, as our household is much the same way (except I did not single-handedly get music therapy started at school). I've only just begun the journey out of thinking about autism 24/7 and beginning to do things I used to do before autism. I'm sure she can relate.
hi i have a 4 year old autistic child. shes my whole world. she also has a sister who is 3 years old. its been a hard road and still is. i have a husband who doesnt help with her. i toilet trained her twice as she regressed once. he always insists he has the harder job of working. he does a 40 hrs job. as a mother of a autistic child it is a 24/7 job. always worried that she will regress as she has done in the pass. she was a severe IUGR baby born at 28 weeks. she weighted 730g. she stayed in the neonatal unit for 9 weeks. she is also severely visually impaired. which makes it hard as autistic children learn with visual aids.in some areas she easy as she doesn't empty or eat soaps. but she sticks everything in her mouth, jump ,climb basically all the autistic traits and her limited verbal ability. she just started to say a few words. she attended a mainstream school which had a VI team for her eyes. but she wasnt progressing so she was sent to a special school as the diagnosis was given of her autism. even though she had autism traits as a baby but they can easily be mistaken for visual impairmnt traits. so good work for caring enough to give your son the time. my husband just says she naughthy.
I think she's phenomenal. I can understand not wanting it to take more of her world than it already does. Anonymity makes that easier. As a mother of 2 ASD boys I empathize with her. No one cares more for him than she does. His life is her whole life. I left a great job at a medical practice to stay home with my oldest son when we found out how often he was going to need therapy. Now with him in school and I youngest having been diagnosed as well, I have nothing but respect for a woman who puts her child's life ahead of her own.
Julie W.
And for the record, Kyle not progressing is a result of ASD, his being as happy as he is, and he is clearly happy, I would say, is due 100% to his amazing parents. Some parents care too much about the negative diagnosis and not enough on the good things about having or being an Autistic child. Any person who tries to deny that having a special needs child is anything less than stressful as hell is LYING. Kudos to AD for being REAL and his wife for being a rock star!
Love this blog page