When I was a little girl, my parents would take us to the county fair or to Six Flags over GA to ride roller coasters. I was always the type who would get on any ride or roller coaster not because I wasn’t terrified, but because I knew I wouldn’t die and that at the end I would be so exhilarated that I did it! Some of the rides were fun, but some I would just have to hold on tight and scream my lungs out to endure until the end. When you scream out “Stop the ride! Let me off!” no one hears you. They can’t stop the ride just because you want off or you think you are going to have a heart attack. No one cares. You can scream or cry all you want to, but it changes nothing. You just have to hang in there and endure. You have no idea when it will be over. It feels like forever. You can’t even really think straight to evaluate how far along in the track you are. You just hold on tight, scream, cry, pray, and try not to throw up. This is very similar to my experience as the parent of a child with autism who is going through the tween years and has recently developed OCD as well (because no, Lord, autism just wasn’t enough). It often seems as if just when I have caught my breath and think I’m gonna survive this thing just fine, I am thrown into another upside down loop de loop, tilt a whirl and I’m in danger of losing my lunch, my glasses, and looking pretty rough when I get off this thing. Thankfully, I get a chance to get off this roller coaster sometimes when my son is at school or at my mom’s when my husband and I have a date night, but even then it feels as if although I’m not actively riding it, I’m just standing in line, trying to settle my nerves taking deep breathes and waiting to get back on again.
I love my son more than anything and we have beautiful, wonderful moments which are exhilarating like the moment when the roller coaster stops and you smile and laugh with glee because you did in fact survive this thing and the endorphins and adrenaline are pumping through your body. Woohoo! A sweet hug! Another milestone met! Another new word! Eye contact! Potty trained! He only turned the light switch on and off 11 times instead of the usual 12! But, watching him struggle so much in spite of all of the extra stuff I am doing and buying and trying….well it makes me want to scream “Ahhhh I hate this ride! Someone get me off! I’m gonna puke again!” pretty often.
ASD is a spectrum and presents in a lot of different ways for different kids and adults. You may have ASD yourself or have a child who has ASD or OCD and it may feel like a walk in the park to you, I don’t know. All I know is my experience and my truth about how it feels to parent my particular child in my particular circumstances and it feels hard right now. Just when I think I’ve got a handle on things, here comes another loop I’m thrown for whether due to a new developmental stage, illness, finances, etc.
I think people must assume that because I say it is so hard, I’m just doing it wrong. I wish they could see how much time, money, energy, therapies, diets, supplements, now even medicine we are doing to try and help my son thrive and be happy day to day. I feel like I should be able to make this work somehow. I should be able to not look so frazzled or I should be able to stay in Mary Poppins mode and not ever raise my voice. I should just get up earlier to avoid looking disheveled and a mess at the morning drop off at school (nevermind I’ve been dealing with his sleep issues all night long and I work late two nights per week). I should pray (check, I pray almost constantly). I should work from home. He should take this supplement (yep, already taking it), we should try this diet (yep doing that), I should _______________ (not be writing about it?). I should change my perspective (yep in therapy myself trying to do that). There has to be something I could just fix and make this easier on myself. I wish there were. I spend hours each day researching how to make this better, how to be a better mom, how to accept this unusual life journey and find more joy in it, how to make my marriage survive this, how to help my other son cope, how to make extra money to fund my sons needs, etc. Although many of the things we have done for our son and for ourselves have helped tremendously, I am still working uphill just to get my son to the most basic level of functioning and to get my family to the most basic level of functioning. Even Pollyanna would admit that’s kind of hard.
Each day is a roller coaster of stress and I am horrified at how I must appear from afar. This is not me. This is me just trying to survive. My son isn’t going to go into remission after his treatment. He isn’t going to be sick for a little while. This is a long-haul thing for us. A marathon, not a sprint. I feel like the main character from the movie “Bad Moms” who is just stressed to the max, except I don’t have the option of just telling everyone to take care of themselves for once, because my son can’t. So, I publicly apologize for seeming constantly scattered, self-centered, crazy, stressed out, no time for small talk, snappy with the front office staff at the school, not put together, too focused on my son’s ASD diagnosis, flaky, not a good friend, forgetful, not 100% on top of every little detail at work, not having the energy to invest into things that aren’t my business or I don’t care about anyway, frequently venting to my BFFs, always broke, not able to hang out much, bursting out in tears and saying “But I work 3 jobs and what we are doing now is already so hard!” when my son’s reading teacher asks me to do add extra homework, frequently not able to answer the phone, giving up on daily gym workouts, holding tight to my Saturday morning yoga time, not up for any kind of “fitness challenge” because my life is already a 365 challenge, or just distant and crabby in general. I apologize for being strangely open (oversharing) and also really defensive (pretty much not wanting to hang out with non-special needs parents much at all).
This is my norm, this is my life. I am just trying to hold on tight, scream, and survive it without losing my lunch just like a kid riding a killer rollercoaster. I promise you that this has nothing to do with you, I really do like you a lot. I would love to be able to hang out with you more, to relate to your stories about your kids extracurriculars and how proud you are, to put more effort into my home businesses selling amazing things, to have more of a social life that is not online in nature, to laugh more, to volunteer more at church instead of crying through all the songs just to release all that stress, to be able to just throw my kids in the mix of all the other kids at church and go chit chat with the other moms rather than having to go sit next to my son and try to hold back my tears as I rub his back while he’s biting himself and rocking back and forth because the music is too loud and there are too many kids having too much fun in there.
Maybe we all have our roller coasters, I don’t know what goes on behind the closed doors of your mind or home, but I do know that it really does help to just let it out and scream your head off sometimes when you need to, to hold on tight to the people you love, throw your hands up and laugh hysterically sometimes, breathe deeply, and remember that you won’t die even though you may feel like it on the loop de loops. We special needs parents will survive as we wing it together. If you need to talk to someone who “gets it”, call me. It will likely go to voicemail, but I will call you when I’m driving alone in the car. Reach out to Parent2Parent or a support group. You don’t have to ride the roller coasters alone, there are plenty of seats and we can hold hands and scream together as we go through the dips and curves.