By Loryn Stone
Raising kids isn’t easy for anyone. Regardless of your child’s capabilities or development, they’re going to do something you don’t understand. You’re always going to question your parenting prowess, and you’re always going to wonder “is my kid okay?”
As a mother to a (very high functioning) little boy on the autism spectrum, I know when my friends with average developing children are just tripping out from their own stresses. And while my son is excellent, sometimes his needs and accommodations put the rest of the family’s needs on the backburner.
So then, imagine what it’s like having two with special needs.
It’s a whole hell of a lot of work.
My friend Dan is one of those parents, the stay-at-home Dad and primary caregiver to his two beautiful children. And fortunately, when I asked him for a peek into his daily life, he was kind enough to enlighten me.
Dan, can you please tell me a little bit about your kids and their separate special needs?
Rachel is 5 years old with Autism, she has minor cognitive delays and has sensory issues with too much noise, minor behavioral issues, has a speech delay, and still isn’t potty trained (though she’s really close thank God!!). Pretty run of the mill stuff for semi-high functioning autistic kids.
Jesse is my 3 year old with Down Syndrome, he just hit 20 pounds and started fitting in clothes for 1-year olds, but that’s just adds to his cute factor. He’s had 2 open heart surgeries, had a pacemaker installed, got a blood clot in his leg from the 2nd surgery, has a hyperactive thyroid, and is on blood pressure meds. He’s also being stubborn as all hell with his eating, as you can imagine by his being 20lbs at his age. I’d like to say he gets his stubbornness from his mom’s side, because my side looooves us some vittles.
What was diagnosing them like?
With Rachel’s, I was a complete ass about it, I can admit that in retrospect. I was a complete ass in denial and gave my wife a really hard time. My wife suspected that Rachel might have delays around the time Rachel turned 1, because in my wife’s family, the kids all did stuff really early. Hell, they make it seem like everyone in her family was doing cartwheels and speaking 5 languages by the time they were 12 months or something.
So, when Rachel turned 12 months and could barely say a couple of words, was sensitive to loud noises, and wouldn’t play with other children, my wife immediately started saying that she felt something was wrong, we need to get her checked out, etc. Me? I’m a guy, we don’t think of that stuff. To us it’s no big deal. So what if our 12 month old isn’t blabbering away… she’s only 1, she’ll talk eventually, she’s a kid.
Most guys are pretty laid back with being concerned about babies not reaching “milestones” by accepted time frames, all kids are different.
My wife started bringing home books like How to Tell if Your Child is Autistic and looking into articles online about it. I was a complete dick, I’d get mad about it and we’d have a “discussion”, it always used to bother me that she would just automatically assume that Rachel was autistic simply because she wasn’t talking yet, c’mon… the kid’s 18 months now, she’ll be fine I’d say. Eventually I did what all of us guys should just do by default: shut the frack up and listen to our wife. I agreed to take Rachel to get tested and sure enough, they said she had mild Autism. That’s right around the time Chuck Norris walked up and front-kicked me in the mommy daddy button… that sucked.
Jesse was different. Because of my wife’s age, ANY genetic testing she had done would automatically come back as a positive for the fetus to have down syndrome at the time. There are more reliable tests now, but not then. No matter what test we’d take there would be no way to know if it was a false positive or not (other than an amnio, which wasn’t an option). So we pretty much just had to cross our fingers, hope for a false positive, and see what pops out when the turkey’s done in the oven.
We didn’t really get to enjoy that pregnancy after the 3rd month. When he was born it was confirmed, my son had Down Syndrome. I shut off mentally for a while after that. It was not a happy time. I shut off from everything. He was in the NICU for a month and a half at the first hospital because of his heart defect he was born with, and I only visited the hospital 2 or 3 times in that month and a half. It was a very, very difficult time for my wife who was there every day with him.
Tell me what an average day full of therapies and appointments is like for you. How do you fit household duties like cooking/cleaning/etc. into this?
Each day is a little different due to the different therapies for each kid on that particular day, so I’ll just pick a random day, let’s say…Tuesday.
7:00-8:00am = Get the kids up, fed, get Jesse his medications, and leave to drop Rachel off at her “special” preschool.
8:30am = Drop Rachel off and head back home
8:50-9:15am = Get home, shove food down Jesse’s face pack a bag of snacks, grab his bag, and run to his Occupational Therapy session, try cleaning up the mess from the morning.
9:30-10:30= Jesse has Occupational Therapy
11:00-11:30am= Drive to Rachel’s school to find parking for when she gets out at 11:30. Feed Jesse snacks in the car, 1 at a time so that he doesn’t choke (feeding issues), pick Rachel up and head home.
11:45-12:00pm = Get back home shove lunch down Rachel’s face, run around cleaning up the house by noon.
12:00-2:00pm = Rachel’s behavioral therapist shows up at noon for Rachel’s daily therapy. Start getting Jesse’s Lunch ready while keeping him away from Rachel’s therapy session, spend around 1 hour locked in a gladiatorial death match with Jesse to get him to eat his food. Tokyo has a better chance of fighting off Godzilla than I have of getting that little f’n rugrat to eat his food most days.
2:00-4:00pm = Jesse goes down for a nap, I then have to clean up a bit, keep Rachel occupied, and then start getting dinner ready for when my wife gets home.
4:00-4:30pm = My wife gets home, at 4:15 we throw our dinner down our throats, and started getting Rachel ready for her Tuesday night speech therapy class.
4:40-5pm = Wake Jesse up from his nap, give him his Thyroid meds, and get Rachel out the door to her speech therapy that starts at 5pm.
5-6pm = Rachel is in speech therapy
6-6:30pm = Get back home, arrive home at around 6:30 to my wife who is currently locked in to the Tuesday night gladiatorial death match with Jesse. It’s a daily struggle that never ends, similar to trying to keep your VD under control with medication…. but with less success.
7:10pm = Jesse is done eating and goes bat-shit crazy because “monkey hour” has hit.
7:15-7:45pm = Throw Jesse in the car and drive him around for half an hour to calm that crazed cabin-fever baby the heck down.
8:15-8:35pm = Start getting them in their PJ’s, brush their teeth, all that usual nighttime stuff.
8:45-9pm = Give Jesse his blood pressure medication, then his bottle, throw both kids in bed, shut the door, and sit on the couch for about 30 minutes.
9:30pm-2am = Get off my ass and start cleaning the house and do all the regular parent stuff at that point, then plan for Wednesdays therapies.
What is your relationship with your wife like? Have your children’s’ needs made you two stronger? Is there any unspoken anger or resentment?
As best as it can be under the circumstances. You pretty much go through a time period where you stop really acting like a married couple and start acting like 2 different caregivers that just happen to live in the same house as your patients. Where normal couples can have family come over and babysit so they can go on a date or get out for an evening, good fucking luck finding someone to want to babysit 2 special needs toddlers.
The oldest of which can’t communicate verbally and isn’t potty trained, and the younger of which can’t be fed half the time, can only eat puree food when he DOES eat, and for all intents and purposes is still a 12-month-old developmentally though he’s 3. We’ve gone out to spend time alone with each other 3 times in the past 5 years. Have our children’s needs made us stronger? *shrug* I dunno. We’re a team, we’re stuck in this together, you just keep pushing forward and deal with it day by day. Unspoken anger or resentment? Not really. All of our anger or resentment is towards our situation, not at each other.
Are there any activities you guys simply can’t/don’t do?
Pretty much anything. Even going to the park is a big production because there really isn’t any afternoon or evening during the week where there isn’t a therapy, and we also have to be mindful of when Jesse’s feeds are, because he can take anywhere from a wonderful 15 minutes to eat, all the way up to 1.5 hours of making you want to peel the skin from a baby deer with your bare hands in anger.
Can you share any stories or anecdotes that depict a really good or really bad parenting day for you?
Today was a pretty good day all things considered. I walked in to Jesse dunking my phone repeatedly into a cup of ketchup as if it was one of his sister’s Fish Sticks. During a shoulder ride, Rachel had the smelliest fart in her life, and made me think that a gate to the 9th level of the abyss had just been opened behind my head, and I realized that I’d been walking around all day with my t-shirt on inside out, so just a pretty typical day.
What are the biggest misconceptions about being a stay at home dad with your children?
That you’re home because you’re lazy and don’t want to work. I got that shit from friends, from both families, from strangers. I didn’t ask for this. I had just gotten a promotion at work. I was working my butt of as a graphic designer/web developer for a good company. I was taking additional courses at the local college to learn new programming languages, I had just gotten an $8/hr raise, and then BAM…your life is done.
The hardest part about being a stay at home dad is the disgust and loathing that people will throw at you when they hear that’s what you do. I’ll be having a perfectly fine conversation with someone in line at Starbucks and then as soon as the guy asks what I do and I say “I take care of my kids”, you’d think that I just told him that I skin puppies for fun.
Forget being a woman and saying you want to get married on your first date, the ultimate conversation killer is being an adult male and tell someone that you stay home with your kids instead of your wife. My wife’s parents used to ask her repeatedly why I was home… “is Dan lazy? Does he not want to work? What’s wrong with him?” I’d get the same thing from my relatives. Hey dipshits, remember that part where we have 2 disabled kids…? Family and friends are supportive now. My wife’s family has been a bunch of damn rock stars. Minus the 1st kid where they made my life fucking hell for about half a year, but that was a long time ago. With this latest ordeal they’ve been so completely and utterly awesome. Mine’s great too, but hers is next level.
What would you say to other parents in a similar situation?
It’s going to suck, it’s going to suck hard, and it’s going to suck for a while. You need to come to terms with the fact that the life that you were hoping for is over. You will still have a nice life eventually, your kids will start doing better eventually, but in the meantime, it’s going to really, really suck. You have to be able to come to grips with that, otherwise you won’t be able to move past it to enjoy the good things once they start coming. It honestly took me 2.5 years of staying home with my son every single day, before I stopped having anger and resentment in my heart towards him, before I allowed myself to let go and just fall in love with him. I completely and utterly adore him now. I love him to death…but you have to be able to allow yourself to grieve before you can get to that point.
The son that I had hoped for, longed for, the son that I had wanted to do various things with, share normal father/son experiences with…. that son was never born, he died. It took me 2.5 years to make peace with that and to love this son completely. You have to understand that those feelings are normal, natural, and you have to process them and get past them. But things will never be normal, and for years it will be painful and sad when you see your child next to normal kids their age.
That more than anything is what parents with “normal” children will never understand. To a large degree, seeing your kid next to their kid hurts. I’ve been out with my daughter many times where we’ll be at a playground and other kids will run up to my daughter and ask her to play with them. My daughter will close her eyes, cover her ears, turn away, and start giggling, or she’ll cover her face and start babbling back at them because she can’t communicate yet. The normal kids her age ask her a few more times before they start saying out loud “what’s wrong with her?” and then just leave her alone…. and she’ll just wander off and start playing away from the other kids on her own.
That’s pretty much going to be your life, we don’t really go hang out with families with normal kids her age yet, because it’s still too f’n depressing for us to witness that. So sorry… no words of encouragement other than you’re going to have to go through that, process it, and accept it. Eventually it’ll get easier, but it’ll just be an easier degree of Suck, no matter how much you love’em.
What are your long term and short-term goals for your children?
Rachel: For her to continue improving with her speech to where she can communicate with us and with her peers. I would love to someday be able to have a conversation with my little girl and see her get to the point where she could pass for a “normal” kid and be in a regular school with regular friends, being invited to do normal things.
Jesse: That he’ll continue improving. There is such a wide range of disability with Down Syndrome, we honestly have no idea how affected he’ll be mentally or not. If he’ll be high level or low level, no clue. It’s also different with him because I’ll be honest…he has downs, and I’m being as real as fucking possible with these questions. As much as I love my son, and as much hope as I have for him, he will never be able to really integrate into society due to his disability.
Yes…. people will be kind to him, yes, he will hopefully be able to get a job or get a girlfriend… but don’t be an idiot, you know what I mean. He will never truly be 100% full able to join into society and be accepted. Rachel has a better chance for that, as such…we’re happy with any progress he makes, but our hopes are much higher for Rachel, as she has a better chance of being able to lead a mostly normal life and pass for “normal” without prejudice at being directed at her once she catches up with her language skills.
Yes, ladies and gentlemen, being completely truthful about your child with a disability is very un-PC.
What are your long term and short-term goals for you and your wife?
To be able to actually start being a married couple again rather than 2 caregivers in the same house. Plus, it’d be nice to be able to go on a fucking date again, but the one thing standing between us and being able to do that, is Jesse and his feeding issues. We’re pretty much fucked until he stops being a cute little stubborn piece of chit and starts eating without turning into a mini version of The Hulk. You can’t throw that at a babysitter.
Do you ever have resentment or anger when you see other parents with their kids? You mentioned once that you rage when you see “Mommy Bloggers” discussing parenting challenges with their kids who aren’t on any sort of spectrum/have unique needs. Can you talk about that kind of bullshit or hypocrisy?
Yes. I don’t resent other parents out of anger, it’s in the same way that a double amputee looks longingly at a person that’s jogging along the side of the road and wishes that they could be experiencing that too…as they look down at their 2 lil leg nubbies. It’s born from Jealousy. I can’t log into Facebook without seeing friends posting pictures of them taking their 3 month old’s to dodger games, taking their 1 year olds out on family trips across the state, on vacation,.. showing pics of their kids that are my daughter’s age playing in a sports league, or post clips of them saying cute things… meanwhile my daughter can’t understand “bring me your cup and your bowl, please” half of the time, and then starts crying. So, it’s jealousy.
Mommy Bloggers? Yeah, I fucking hate them. Not every mommy blogger… just the ones that blog about their kids and about parenting. They are the most self-absorbed narcissistic pieces of shit that act as if they have the most profound thoughts on every single fucking facet of parenthood. They write articles such as “How I learned to be the bestest mommy ever and make more time to share cuddles with my baby while on our way to mommy and me yoga class.”
You can take your yoga mat, roll it up nice and tight, turn it sideways, and shove it up your bloggery mommy ass. It’s like listening to some yuppie droning on about how difficult their life is because the dealership didn’t have the BMW that they wanted in the right color… meanwhile you’re driving an ’84 Honda Civic with a bumper that’s duct taped on.
The best anectdote that I have ever heard about what life is like for special needs parents versus normal parents was told to me by a good friend with a 30yr old daughter that’s mentally a 6-year-old. He put it like this to me soon after Jesse was born:
Imagine that for your entire adult life you have dreamed of going on a trip to Italy. You love Italy, you love Italian food and culture, you even learned to speak Italian as an elective in college. You vowed that one day you would save up enough money to take a trip to Italy, travel the country, and then find an area to settle down in and become an Italian citizen. You meet a woman, fall in love, get married, and you both start planning your Italian trip together. You spend years talking about where you’re going to go, what you’re going to see, where you’re going to eat, what areas to tour, and you even make friends with other couples that are going to be going to Italy around the same time that you are.
The big day arrives, you board the plane with your spouse and friends, all of you so excited to finally get to Italy after years of planning and saving. Everyone in your family is excited for you, all your friends back home can’t wait to see your pictures and status updates on Facebook when you land in Florence, you even sold your home so that you could purchase land in Tuscany and stay there forever.
Then the plane lands, the stewardess tells you and your spouse to come with her up to the front of the plane, where the pilot opens the door, tells you that you’re being dropped off in Guatemala, and then shoves you out onto the tarmac. As you sit there stunned on the concrete, the plane takes off for Italy with everyone else, and you and your wife are stuck in Guatemala for the rest of your lives. Oh… and you get to constantly see pictures and ready stories from your friends who are in Italy, visiting the Sistine Chapel, riding the Gondolas in Venice, touring the Vineyards of Naples,…and you are never allowed to leave Guatemala.. ever.
That’s pretty much what it’s like.
Eventually you’ll stop hating Guatemala, you’ll make friends with Guatemalans and have a pretty decent life as far as the standards of that shithole country are… but you will always wish you were in Italy. You will always be jealous to a degree of all of your friends that made it there, and you’ll always be sad when you get to see all of their pictures, videos, and read about their experiences with their Italian adventures and Italian friends. Those were supposed to be your memories too.
Instead you’re riding on a donkey-cart, five miles into town, so you can sell vegetables to buy some shoes.
Follow Loryn on Twitter and tell her about your life. She also has a personal blog, and her debut novel My Starlight (a YA novel about anime, cosplaying, fandom, sexuality, love, loss, and friendship) will be released August 3rd, 2018 by Affinity Rainbow Publications. Pre-sales will be available in July.
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