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2 days ago I wrote a post about how my wife went away for the weekend. And the point of the post was after 4 days of being alone with my non verbal son I realized what my wife goes thru as a stay at home mom (SAHM) with a non verbal kid.
How quiet it can be and how long she can go without having an actual back and forth conversation with another human being.
I ended that post by saying
Now I know what some of you were thinking, “why doesn’t she get a job?”
Well that’s what this post is about.
Why doesn’t my wife get a job while my 13 year old autistic & epileptic son is in school.
It’s a valid question I guess.
I’ll admit that there’s been points over the past year that I’ve wondered that as well and even suggested it to the wife.
Prior to this year wifey would drive my son to and from school each day so her school day was a lot shorter.
In an old blog post from back in 2011 I explained why she drove him…
She is a stay at home mom because she’s accepted the fact that my son’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…
And in another old blog post from 2011 I wrote this about why my wife is a SAHM
When it comes to my wife getting a job… I honestly don’t see what job that she could get for the 5 hours a day that Kyle is in school that would bring in enough money after taxes to make it worth her while…and what kind of job that she could get that would be so flexible with the weekly drama that is life with Kyle….not a week goes by where she isn’t called about something… picking him up early because of an illness… going in early for a meeting…. dropping him off late after an early morning doctor appointment… It never ends…
However, in September 2015 he switched to a new school… that we LOVE. A new school, that is 30+ miles away. A new school that you have to take a bridge and pay two tolls to get to.
So, since September we had to bite the bullet and put him on the school bus.
And it’s quite a long bus ride. So he’s out of the house from about 8am – 4pm.
So, yes on paper, she seemingly could get a job.
And every once in a while when the king is going thru a good stretch behaviorally I think “he’s gone for 8 hours a day… So she could find a 6 hour a day job and still be home in time to put him on / take him off the bus”
But this week was a perfect example of why that’s not always as simple as it appears to be.
He had two seizures while in school on Monday while wifey was still away with her friends so I received two calls from the school nurse.
All those posts I wrote back in 2011 of why she’s a SAHM? Those were before he started having seizures. Those started in 2012 at the age of 9. Epilepsy is our bigger worry these days.
So I fielded those two calls from the school nurse and had to make that decision as to whether or not it warranted picking him up early or letting him stay for the rest of the day.
I made the executive decision (without checking with the wife) to let him finish out the school day.
However, I’m sure if it was on her watch, she would’ve called me at work (probably her first conversation of the day) 🙂 and we would’ve debated whether or not she should go pick him up.
And wifey probably would have. And maybe I should have.
He’s been going through a good stretch with the seizures lately but they always seem to come back with a vengeance. And when they happen during school hours these calls and these types of decisions can happen on a weekly basis.
So because of the Monday seizures she needs to pull him out of school early on Thursday this week to check in with the neurologist and find out why he’s having more seizures. And I won’t be able to take off work for that appointment so she’ll be bringing him solo. So if she had a job, she would need to take off on Thursday afternoon…
And then Monday night the king came downstairs and we realized the ring finger on his right hand was crazy swollen. We have no idea how he did it. But he likes to stick his finger in weird places and get it stuck, and he probably did that and yanked it out. His two knuckles looked bruised.
We iced it and sent him to school on Tuesday, and both the school nurse and his nurse on the bus suggested that we get it x-rayed to make sure it wasn’t broken.
On a side note…
God knows what they think of us at the school, not picking up our kid after two seizures and sending him to school with a possible broken finger. But our thinking is, unless it warrants a trip to the hospital all he’s going to do if he’s home is sit on the couch and watch tv or nap, so he might as well be in school with more eyes watching him and a nurse right near by.
Anyway, so for a big part of the school day on Tuesday wifey was calling doctors, and getting a scrip for the xray faxed to the radiology department, etc. and we all went for the xray together when I got home from work (because getting xrays is a 2 parent job)
xray results, it’s not broken
All this to say that her getting a job that meets our autism and epilepsy lifestyle isn’t easy.
Could we use the money from a second income? Sure.
Do these emergencies happen all the time? No, he can go months lately with no issues, no early school pickups, etc. However, when they do happen it seems like they come in bunches. And when he gets the common cold, he’s usually out of school for a week. That’s just the way he is. So she’d be taking off lots of time from work for all this stuff
Is there a job that wifey could find that could fit this crazy schedule? Maybe, but it’s not going to be easy.
And if she did get a job, she readily admits that it’s got to be a job that takes her mind off of autism and epilepsy. She’s not one of those moms that wants to do more autism stuff or special needs stuff as a career. Nothing against the moms who can do that. They are superhuman in our eyes, but she wants no part of that.
I wrote this in a previous blog post from 2013 and I think it sorta fits in here as to why wifey doesn’t have a job and definitely doesn’t want a job in the special needs field…
A couple of weeks back we had to bring Kyle for some medical tests in the early afternoon so I took the day off from work.
The plan was to drop the king off to school in the morning and pick him up around 11:30am for his appointments.
So I tagged along with the wife for her normal Friday morning routine.
And she was full of energy. We dropped him off at school.
Then we went for a quick food shopping trip. She was literally racing around the store. And I’m struggling to keep up.
Me: “Why are you running?”
Her: “Cuz since he’s only got a half day I got to fit it all in…”
Her agenda…
Food shopping, a quick breakfast, then the gym, a quick trip to costco then we pick up the kid.
And she was on speed, full of energy…
ME: “Are you like this every school day? How do you keep up this pace? I’m getting exhausted…”
HER: “Yeah. I have a lot of energy in the morning. I gotta keep my mind busy. But late in the day I crash. Unfortunately I usually crash right before you get home from work…”
ME: “Why don’t you crash during the day and save some of that energy for me, for when I get home?”
HER: “Cuz I gotta keep myself, gotta keep my mind busy during the day. Otherwise I’d stay home and cry all day…”
She just said it completely matter of factly…
And I just nodded, smiled, and that part of the conversation ended and we went on with our day.
But it stuck with me.
Survival…
For wifey it’s about survival. She tries to find joy in the little things, in the frivolous things and she keeps her mind busy…busy with autism things, of course, but also equally busy with non-autism things.
Anyway wifey is much better about keeping her mind busy and off of obsessing about autism and epilepsy and worry.
And maybe if she didn’t she’d do that she’d “cry all day” or more likely she’d go a little crazy or fall into a funk or a depression…which is what happens to me sometimes.
She’s always the one of her autism mom friends trying to make plans and get out into the non-autism world as much as possible.
Movies, lunches, dinners, bars to see bands, etc.
And it helps her a lot.
Others might think she’s being selfish. And sometimes my brain thinks that too.
But it’s about survival. And in the grand scheme of things it makes her a much better, more patient, happier mommy and wifey.
So I’ll end it there. That’s why wifey’s not working. Now if there was some high paying job that fell in her lap I’m sure we’d have a discussion and she’d go for it.
But to try to find the perfect job to fit her schedule to bring home a few extra bucks each month just isn’t worth it right now.
Unless you’ve got the perfect job for her in a record store, or a radio station, or a music studio I’m sure she’d be all ears… 🙂
That’s it… That’s all I got. This is like one of my old school posts. It’s literally all over the place! Hope it makes some sort of sense!
THE END
—-
Funny thing about that, the doctor we just saw chided me for putting "unemployed" instead of "stay at home Mom" in the job section of the intake form. He said that it was a "full time job as far as he was concerned" and that's a quote from a specialist who teaches on the subject at a major college. He made me change it right then and there. He's the best doc we've had so far! 🙂
As a stay at home mom to a 7 year old primarily non verbal/mild-moderate son with autism (and a 6 year old NT daughter).. I must say that I absolutely LOVE this post!!! People just do not get the real logistics of it all. I was wondering if I could reference your post on my blog?
My husband is in what I call 'a full time employment' with our son: driving to school, then to therapies, then back home for naps / food, then off to a playground or soft play. I always said that I am in a better place with having my work escapes. So I understand how important the weekend breaks are and am trying to send him away for some rest periodically. Please remember about yourself as well and take care
This is really unfortunate, I hope every day of your life changed for the better.
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Your wife has a full time job taking care of your son. People that do not have low-functioning, non-verbal autistic kids shouldn't even comment because they will never know what it is like. I have a thirteen year old non-verbal autistic son too and it is the hardest job I could ever imagine. I had to pick him up all the time from school for his leaky gut. He missed so much school until we got him on Miralax. He is now doing well, and I enjoy the peace that I get when he is at school all day. he does love taking the bus to and from school. It is nobody's business why your wife doesn't get a second job (and it would be a second job for her). I was finally able to get my husband to work half days on Wednesday to take our son to speech therapy and O.T.- after years of taking him myself (sometimes 3 times a week after school). I hope that your wife will take some time for herself to refuel for when your son gets home from school. Because the stress and toll that having a severely autistic child is unending.
The above reply is right, my wife is now quite ill. She takes such good care of our son that her own health has deteriorated. We are now working hard to help her get the help she needs. It's like health wack-a-mole. We fix one health issue and another pops up. I have no doubt her condition is the result of stress and being overworked. SO, SAHM to a severely autistic child is super difficult. I'm glad to hear you say your second child is a piece of cake, because sometimes my wife and I wonder if we just suck at parenting.
P.S. I was quite lucky to get a pretty normal second son. I was pregnant when I found out about my older son's autism and considered abortion or adoption because of the odds of having a second child with autism. I can tell you that it is a freakin piece of cake to raise a non-autistic child compared to raising an autistic one. But my second son turned out to be the joy of my life. Can you imagine how confused I am when he gets in trouble at school for talking too much and being too social (as the mother of a non-verbal, non-social older son)? I guess it is to be expected as I prayed that he would talk the entire time I was pregnant. I know that the stress and hard times have taken a great toll on me as a person. I hope that your wife gets the stress relief that she needs. Because she could end up severely ill in the future if you don't make sure she is getting the care that SHE needs!
We tried both working and it was a disaster. Couples with an autistic child that can both work are just better than me…way better…seriously, I'm impressed. When people ask me what my wife does, I say she runs the family; We're old fashioned, lol. The truth is we can't handle the autism, doctors, therapists, meetings, my work, the seizures, special diets, our own health, and whatever other bomb is about to drop just around the corner. Their reaction bugs me because I know they think she is lazy when I know she is the hardest working person I know. Plus, a selfish reason, I like knowing that when I come home from work my family is there.
I am a working mom but it is TOUGH especially with my non verbal 4 year old low functioning ASD kid. I work because I pretty much have to, without my income we wouldn't be able to afford all of our bills. I can see how much easier it would be if I just stayed at home. Fortunately the special needs pre-school my son goes to has a typical pre-school in the same building that offers before-care and they agreed to watch him for an hour in the morning, so that I can get to work on time. He does take the bus home in the afternoon and I also worry with him being non-verbal, that he would not be able to tell me what could be going on… I am taking it day by day but I don't know what the future holds, as he becomes school-aged, I don't know if it would be more difficult to continue to work. But I can totally understand why your wife made the decision she did.
This is why my ex left. He was tired of being the only person 'working'. He never got why I couldn't get a job and this was when she was first diagnosed and I was driving 6O-100 miles a day taking her to and from preschool and after school thereapies, the endless appointments and therapy in the home.
Yep, he couldn't handle it.
I too always say I'm in survival mode. It's what we have to do.
I admire the way you too work together.
Totally get it and my son is approaching his 19 birthday and in College. I went back to work in 2011 part time. For the last year I have been full time. But this last week has been chaotic because he needed surgery on his back and has a vacuum pack attached at the moment and he is not happy. I want to be with him when the nurses come but I can't because I have to work and I took two days off when he was having the surgery. My son is verbal and independent but I still want to be there when something goes wrong or if he just needs me.
Minus the epilepsy, this is a description of a mild day in my life and I'm sure it's a description of a mild day in your wife's life. Like me, people may follow us around, but on every given day it's much busier than others.
Sounds like you comment that you wife doesn't have a job is wrong. I think she has one of the toughest jobs out there…get with the program autism.daddy. you just spent four days alone with your son and you didn't have the strength to even take a shower. Better buy your wife flowers and kiss the ground she walks in…because your a good husband and father of course
I'm a co-parent with my bug at home with me 95% of the time. Trying to get a job with him even when he does start school in sept? Not going to happen. Between appointments, calls from the school, therapy, (he's doing morning therapies at home – school in the afternoons) like – it's just not going to happen. I have gotten back into photography to help keep me sane and get me out of the house on the weekends he's with his dad. It definitely helps. Otherwise – for the longest time – I was literally couch bound for 2 days while he was gone. It was so unhealthy. Things have gotten much better.
It's all about finding balance and it sounds like Wifey has it figured out in spades. ^_^
Autism Daddy, I get it. My husband and I had to make the decision that I needed to leave the workforce due to our kiddos special needs. It was impossible for me to work with all the therapy and doctors appointments. Now that things are fairly stable, that can change at any given moment. Luckily I have found legitimate work that I can do from home around our schedule! That help keeps me sane!!!!!!
Cassandra
P.s. To make you feel better, I left my son at school after five, five second absent seizures yesterday morning at school!!!!! I did call the doctor, though!!! Med change time!!!! Oh joy!