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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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i am writting from Lima, Peru… I hope you see how you are influencing people from other parts of the world!!
well, my our "kings" are of the same age, the topic on this blog is one of the biggest problems we're in, we have numerous nanny and I coudn't recall their names anymore, even how many they are…Me and my wife are both school teachers and that job requires great amount of time away form home.
I completely understand. My son is on the spectrum & the brunt of the autism, appointments, therapy, meltdowns, & everything else that falls under the autism umbrella falls on me. Its hard. My hats off to your wife!!!
I am new to your blog and your FB page. I've been an autism professional for more than 35 years, and I truly love what I do. I am sometimes frustrated or tired or whatever, but I'm also acutely aware that I get to go home. I am in awe of Autism Parents, and grateful for the opportunity to be part of the support network.
Hit "Publish" too quickly – I meant to add
I love your blog. Thank you for sharing your experiences with us!
Loved this post….I took on the brunt as a stay at home Mom for 18 years, 13 of those years were living Autism 24/7…when 2 sons were dx. Dad was working 60 hour weeks to keep a roof over our heads but took the kids on the weekends for my sanity. Then I did something utterly crazy and trained in the program I did with my kids ( RDI Relationship development intervention) …so now I get to still do Autism 24/7 butinstead help families while my husband NOW works less and I work more!! haha…. I looked at it as down the road all that knowledge accumulated accounts for something!!!!!!!!!!! 🙂
Loved this post! My husband is an awesome autism daddy like you! I am so grateful to be home with my daughters …they are the youngest of 6 and only 2 left at home caili has aspergers and is 21 in her first year of college ….woo hoo and Megi is 13 with autism and seizure disorder. I am so grateful that my husband works hard to provide most of our income so I can stay home and make pecs, and write blogs….. 🙂 o and try and teach my daughters how to navigate this crazy world. Thank you for your post Im sending it to my Rock star hubby! Its few and far between that we meet men so involved in their kiddoes! Way to go!
I completely understand your wife. I'm myself on 24/7 schedule with my high-functioning son, and always been. My husband is inthe the military so there's been times that I've been 6+ full months in charge…
I like the way Tracy thinks; I could see it being another guy's excuse… however, I must say, you and your wife are both amazing!! I wish you lived in my area, because I would love for your wife's talent and skill base to rub off a bit. You could also stand to rub off on some of the men in my area…
Daddy, love your blog and think you're an awesome autism dad, but gotta tell you like I tell my hubby—Don't pat yourself on the back because you're "better" than most autism dads! We're the same as you and your wife, except I do work 3 12 hour shifts a week. During arguments, my husband uses the same thing, "I'm better than most…" and to that I say, "I wouldn't tolerate you being less because he is OUR kid; we created him 50:50!" Are you a better husband because you don't screw around like "most"? Are you a better neighbor because you cut your grass Are you a better citizen because you are not a child molester? No, you're all of those things because it's what you expect of yourself, as it should be. You're a great autism dad because you love your family and you're doing what a great dad SHOULD do. Don't lessen your contribution by comparing yourself to those who don't hold up their end of the bargain. By comparing yourself to them as if you are doing more than expected, you give them an excuse for not doing their part–you let them off easy, because after all, they are like all the others.
Mrs. Autism Daddy, you rock!
Rant to all "450" of you, guess you wrote this 13,000 ago!
Love this blog page
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!
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.
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.
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.
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
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.
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
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
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…)