Come on. Not another picture.
The thing I most want to do with this site is the part of the title that says Let Me Help You Understand. Autism is impossible to explain in a couple sentences, which is why I hope the readers here will get a better flavor of what it’s like to be the parent of a child on the spectrum. Warning: Strap in because today will have some uncomfortable moments.
**Note: I try hard to not make this a place where it sounds like a Oh Whoa is me festival. Sorry, but today will include some of that, but hang in there because I still think you will at least find the following fairly illuminating.
Before your child is even diagnosed being on the autism spectrum, your life has already changed because kids with special needs of any type take so much more time and focus to parent. You remember your friends that you used to go out with? Not going to happen anymore. The words special needs are there because this child has needs that are out of the ordinary. Needs that the average high school girl down the street isn’t equipped to handle. The person that watches your child is someone you have to trust implicitly. That means it’s close relatives or someone who has been educated in the field. There are so many times in regards to work or doctors schedules that you are in desperate need of help that you can’t waste these opportunities going out to have fun. Anyway, it’s not like the whole time you are out you are going to have a good time–when your constantly worried your child isn’t having a major meltdown or having an asthma attack.
Besides feeling trapped, you also are just fucking tired. If you are not worn out from having to focus almost all your attention on your little child who cannot do almost anything for themselves, you are exhausted from getting very little sleep. Many kids on the spectrum have poor sleep habits and their parents are often fortunate if they get half the sleep they need. I rarely consider myself lucky about the challenges Maddie faces, but the one plus of her motor going 100 miles per hour is that when it’s time for bed, she is worn out. Unless there is a thunderstorm or she’s extra-excited about what is going to happen the next day (like any typical kid would be), she is a heavy sleeper who will conk out for 10 to 11 hours each night. I know some parents right now are hating me reading this, but this great sleep pattern comes with a price… a day of non-stop Tasmanian Devil energy.
Now we come to the buzzkill part of the story. During the few times you might get a little break and get to talk to a bunch of other parents, you will often feel like an alien. These parents will either talk about 1 of 2 things when discussing their kids.
- Brag about the achievements of their child.
- My 5 year old knows all her letters and numbers.
- My toddler is doing great at Mommy and me swim class
It’s totally natural to feel pride about your child. If you are a good parent you are a big part of why that child is achieving these things. The problem is when one of these alien parents of a child with special needs is there, you most likely are going to start to feel guilty about bragging too much.This is especially the case if you have any idea how exhausting life is for this alien parent to get their 5 year old to use a spoon. (or in Maddie’s case, a 9 year-old) This makes the alien parent not as much fun to hang out with. We are a buzzkill.
2. Bitch about how their child behaves.
- My 5 year old won’t stop sassing me.
- My potty-trained toddler has been wetting the bed some nights.
It’s totally natural to be beyond frustrated about your child. If you are a good parent you are concerned with your child’s behavior and sometimes you need to vent. The problem is when one of these alien parents of a child with special needs is there, you most likely are going to start to feel guilty about bitching too much. I can tell you personally that listening to someone brag about their child isn’t half as tough to swallow for me as to listen to them bitch about something that seems like a triumph in my life.
So your 5 year-old won’t stop sassing you. Well my 5 year-old can’t say more than 5 words and I doubt you would be able to understand any of those.
Wow, you’re telling me your 22 month-old sometimes wets the bed, despite being potty trained. Oh how my heart fucking aches for you. Maybe this will pull you out of the dumps. Stand a day in my crocs and try changing a 7 year-old’s poopy underpants? Oh and make sure to act joyous while you’re doing it because you know that your constipated child at least got some much-needed relief.
See what I mean. We alien parents are total buzzkills. While our children are shunned by their peers at a very young age, we start to fall by the wayside, as well. And I don’t blame anyone for it. It’s pretty hard to keep a close friendship with a person if they constantly turn you down when you ask if you want to go out for drinks or come over for dinner. We alien parents would like to but know that our number 1 focus is our special needs child. And let’s say we can find the time to go out with you, how much fun is it for a typical parent to be constantly worrying if they are going to say something that seems harmless coming out of their mouth, but will be soul-crushing to a certain extent to the alien parent? No I get it. No matter how charming and fun we used to be, we are a tired, frustrated buzzkill most of the time to a parent with a typically developing child. If we were really to share the truth of our stories, your complaints would seem about as valid as complaining of a brain freeze after eating a pint of Ben and Jerry’s.
Now you might think the answer might be to friend up with some other parents of a child with special needs. Well if you think it is hard for just 1 of these alien parents to make their schedule work to meet for just coffee, trying making the equation work when you have 2 alien parents. Oh and here’s another Catch-22 element. As much as we appreciate being around someone who actually understands the struggles we have, when we get the chance to escape we need someone who brings some positive energy to the festivities, which isn’t something an alien parent can usually muster. Two storm clouds together isn’t the optimal experience, even if they meet on a sunny day at an outdoor cafe.
I have no doubt that the majority of parents of a special needs child suffer from some pretty severe depression, especially in the first few years. I’m also guessing that most of these people don’t take any anti-depressants because we rarely have time to go to the doctor for ourselves. I’m pretty positive that very few get any psychiatric care because our finances don’t provide for that type of cost and our insurance already is being drained from our child. Hey, but at least there’s self-medication! Well, not even that is typically an option because if you are by yourself, you have to stay sober so you can deal with any potential catastrophes that generally seem to be just around the corner. So as much as it’s needed, it is rare the moment when we can say It’s Miller Time.
(Time to play the superhero music) What keeps parents of children with special needs from laying in the fetal position all day? Simple answer. We have no choice. Shit has to be done and we are the ones that have to do it.
Man does this read depressing. Sorry if this has bummed you out, but believe it or not, this was me actually sugar-coating it. These things I have outlined are the reason that so many parents of developmentally disabled children hole-up in their homes like they are a sect of the Branch Davidians. Fortunately the internet has helped us alien parents some, as we can find the time after a long day to email a friend. By the end of our long day, we often look so battered that we don’t want to be seen, but we can instant message you. Just please just don’t ask us to Skype. You see, after the day and night we have had, the last thing we want to do is present some Facetime.
Postscript: I should mention that I’m lucky to have a job which enables me to have something better than even friends–fans! Fans just want to tell you how much they enjoy what you do and for the most part leave you alone after. This short-term adulation is really a great deal for someone like me who has a hard time spending longer periods of time with people. Fans almost make the lousy pay and low-grade travel 99.9% of comedians suffer from worth it.