Anxiety and PTSD. What you don’t know about special needs parenting.
Can everyone agree parenting is stressful? I’m sure we all can. I read something the other day though that perfectly described my life.
“If parenting can feel like a roller coaster of anxiety, than special needs parenting is a whole carnival.” I’ve also read that PTSD is common among parents of kids with special needs.
I’ve also read and seen quoted a very popular article: Autism moms have stress similar to combat soldiers.
Now, I’m not pretending to know THAT stress or try and compare, but seriously people, if you have a kid with special needs it’s really not that hard to believe. If you don’t, it may be hard to understand, but let me assure you it’s INCREDIBLY stressful.
Two years ago, I wrote a very scary blog post that I still can’t re-read. I’m not even going to link it here because that would require me going back and potentially reading some of it. It detailed a near drowning incident with my daughter when she was in a group swim lesson. I still haven’t really ever recovered from it. We are around water all the time too, and everytime I’m stricken with an anxiety I can’t quite put into words.
I really don’t know if it’s the global apraxia or her disordered sensory system, but Ashlynn does not have normal reflexes, for lack of a better word. Instead of her body responding appropriately to survive, hers does the exact opposite. Add to it an under-responsive sensory system in which she rarely feels pain, and it’s a recipe for disaster.
An under-responsive tactile system is rare, but I find it is very common among kids with “global” apraxia, and that “global” word is important. It’s scary though. Let me give you some examples.
When Ashlynn was a baby, probably around 4 months or so, I was getting her ready for bed. That’s when I noticed her baby toe had a hair wrapped around it and was swollen. It was so swollen I couldn’t even see the hair as it had created a turniquette. My baby was never fussy. She never cried unusually more than any other time. I had absolutely no indication this had happened. We had to go to the ER and get it removed it was that bad.
In another instance when she was probably three, we were at the playground and she had a full speed head on collision with another boy. Both kids had immediate goose eggs swelling on their forehead; the only difference? The other boy burst into tears and went running to his mother while Ashlynn followed, not crying, wondering if he was ok.
Another one happened recently right as school ended. Ashlynn woke up with a horrific stomach ache. Knowing she NEVER complains of pain I start panicking (it’s that anxiety I’m talking about) and immediately call the doctor and take her in. The result? She had a burst ear drum from an ear infection!! She wasn’t sick or sniffling, she never complained of her ear, pulled at her ear…..NOTHING. The pain in her stomach was described as “referred pain.” I’d never heard of it before. Apparently it’s a thing.
When she was a baby, she didn’t chew her food. Literally if something went into her mouth she swallowed it and this lasted well into her toddler years. I remember a friend came over one day and brought bagels. As we were chatting, Ashlynn started choking. I swooped in, turned her upside down and started violently patting her back. An entire piece of barely chewed bagel appeared on the floor. My friend was horrified. So was I, but sadly it wasn’t the first time that had happened. She’s going to be seven and I still cut up her grapes and hot dogs. If she chokes, it literally is her life on the line. How can I NOT helicopter??
Has your child ever been choking and looks at you with wide, terrified eyes? I’ve never had that experience even once with my son, but with Ashlynn I can’t even count the number of times it’s been so many. Each time brought a flood of overwhelming panic and anxiety.
These are just four of MANY, MANY, MANY instances. Hopefully you have some idea now why I helicopter. I used to think if she could just talk she would be able to tell me what was wrong. Hah! If you still aren’t convinced these examples are enough reason for me to have the anxiety I do, let me outline ONE day in her life that happened this weekend.
We went to a ski town called Breckenridge to visit my husband’s family. We were walking along the side of the street when we heard a car coming. Ashlynn wasn’t in the middle of the street, but like any reasonable parent we both beckoned her to move closer to us. For reasons I probably will never know, she freaks out and goes darting into the center of the road! I went running after and ended up dragging her back to the side. I mean, what is that?? Tell me. What IS that?? I don’t know what that is, but I DO know my stress level went through the roof. I DO know that next time we are in that situation I will now be helicoptering because her natural instinct for whatever reason was to dart into the CENTER of the street.
Next was a trip to the hotel hot tub. As much as I am at lakes and around water, you would think my anxiety over her near drowning incident would have subsided. Nope. I immediately started panicking thinking about it. I had remembered their swim suits but not the floaties. Their cousins assured me it was shallow and even the shortest kid amongst us could touch the bottom. I still with every being of my body want to tell them no, but that’s MY issue and I don’t want to punish my kids for my anxiety. I guess it’s fine if I’m right there. A hot tub is small. I can save them if something happens. They both wanted “privacy” and change in the bathroom with closed doors. Unbeknownst to me, they went out a different door and made it to the hot tub without me. When I realized they were gone , my stress goes through the roof again and I take off into a sprint toward the hot tub.
They were there with their cousins having fun and splashing around. I wish I could say I breathed a sigh of relief, but my stress and anxiety levels could not recover that quickly. I scolded them for leaving without me.
I took a seat on the bench. I watched Jace (my four year old son) jump in (he doesn’t know how to swim) and his head goes under. I stand up and immediately I see him dart out of the water. A human’s natural instinct is to stiffen their body and shoot toward the top, which he did.
Dear God, am I going to get through this? Ashlynn was being more cautious. Okay that’s good. My sister-in-law came in to keep an eye on her kids. My anxiety started to come down. I started to relax (a little). Suddenly and silently, as I’m watching Ashlynn, one second she’s walking, and the next second her head falls under the water. She NEVER voluntarily puts her entire head under the water. In fact, we’re working on that in private swim lessons. I tell you this so you can understand that if her entire head was underwater it was NOT of her own volition. My heart starts pounding, my ears start ringing, I’m seriously panicking. I’m taken back to that day two years ago in swimming lessons and I have to jump in again and save her. Luckily my older nephew was in the water and no sooner did I say grab Ashlynn, he had her in his arms.
She looked scared. Spooked. My nephew looked scared. I’m not sure if it was because of Ashlynn or my reaction. My hands were shaking. In fact, they are shaking now as I type this.
Unlike my son, who went under water and then came shooting out of it, my daughter’s natural instinct is to pull up her legs into a fetal position. I know this, because I saw her do it in the pool that day two years ago, sitting underwater, and I also know this because she is much taller than that hot tub was deep. The only way she could have gone under was she pulled up her legs.
She stayed along the side of the hot tub after that as I sat there wanting to just pull my kids out and go home. The stress is just too much. I need to keep her in my house in bubble wrap and then at least I know she’ll stay alive. I’m being sarcastic of course because the rational side of me realizes I can’t do it, but there is an irrational side that very, very much wants to do that. I’m not gonna lie.
My husband walks past at that moment. He mouths a question “are you ok?”
I shake my head no.
He back up and walks in the pool area. He asks me what’s wrong. Just talking about it has me panicking all over again. He tells me to leave. I can’t stop talking. I’m so scared. He says he will stay, but he’s not even looking at her. Doesn’t he realize he needs to look at her every second? He tells me to leave again more firmly. I hesitate, and then he says my anxiety is making everything else worse and giving everyone else anxiety. I’m upset, but not at him. I’m upset because I know he’s right, but what can I do?
He managed to get her back in the water he told me later, and hopefully she doesn’t have PTSD over it like I do.
So yeah. It’s not hard at all to believe mothers of special needs children have stress levels similar to that of combat soldiers, because our stress never goes away. It’s a daily fight for your child’s survival.