The Loving Myself Journey: Gate #4 – Special Needs PTSD

Like the past 3 gates, this one came in like a wrecking ball at the speed of light, knocking the wind out of my sails, leaving me stranded in 82ft waves.

Before I realized what hit me, I was drowning.

In the middle of an ocean I built with my own 2 hands.

No one in sight. No one around to hear.

HELP! I have PTSD. HELP!

No. Instead. I have decided to channel all of my remaining energy, into getting me to a place where I can rebuild and heal, and most importantly – recharge.

But in order to get to that point, I need to travel back in time (in my red TARDIS) and figure out how I got here. I am not sure which is worse. Feeling this level of deep despair, OR revisiting the jumping off point.

(Be Brave Mama. Be Brave) Here we go!

The moment I got pregnant with E, our lives changed. B spoiled us. She was so easy going. Slept thru the night. Happy. Confident. And just went with the flow. So of course, we just had to have another one.

Boy oh boy. We joke that had E came first, we would most certainly would never have had a 2nd.

Dont get us wrong. We love our kids. With every fiber of our being. And then some.

But E arrived. And from the moment she was born, she made her presence known. She rarely slept (Even in utero). Or slept for days. She was extremely fussy and had to have things certain ways. The world revolved around her. And she let you know it. She figured her way out of every baby lock we put in her way. And until she became independent enough to take care of herself…she would frequently be found outside at 3AM, playing happily in her own little world, or next door with grandma or auntie (Before you freak out, we have a large secluded property and where never once afraid of her getting hurt. Plus I would be up for my day just an hr or so later).

I spent the first 3 years not understanding a single word she said. I got extremely well at deducing from the environment around her, connecting the dots of the past few minutes with the next few minutes. I became an expert at putting her puzzle pieces together. Figuring out what ticked her off. What made her happy. And how to appease her without coddling her.

I spent the first 3 years, pre SPD diagnosis, walking a fine line between not coddling her and picking my battles. Between not giving in and giving her what she needed.

Those first 3 years, I spent alot of times at odds with my dear husband. It was hard. Really hard.

I always joke that if she could, she would climb back into my womb any chance she could and be content. I also joked that we still had our umbilical cord attached until she was 4. We are connected on an intense level (hence why I need to place my focus on B as well).

Then we got her diagnosis. And the label helped. It helped point me in the right direction for answers, for tips and tricks, for support. And the understanding that I am not crazy. That how E is wired, is most definitely not all in my head. And others (aka everyone else but E and I) – just honestly had no idea how to manage E on a day-to-day, hour-to-hour, meltdown-to-meltdown level. No one tried to.

And when I do tell them, maybe it was because this is so invisible, I would get the answer “just let boys be boys”, “he is just a kid”, “aren’t they all little energizer bunnies at this age?” “it is just a phase, he will grow out of it”.

p.s. she has yet to grow out of anything….

Man. I spent alot of time beating myself up. I lost friends. I stopped caring about myself. I stopped eating right. I stopped breathing for myself. I lived for her. She was my baby. And she needed extra. And my soul needed to provide it.

And then we started special therapies. And early intervention. And speech therapy. And sensory diets. And my all time favoite….how to be 10 steps ahead of her, being able to see every single potential outcome before they have a chance to become reality. AND then having a backup plan for every single potential outcome.

On any given boring (which is relative in our house) day, I have already envisioned about 4 different 10 step routes, and have planned 4 backups before I wake up.

If there is an event or an outing that we are going to in the near future, this is what it looks like in my world:

Research the event: Going to see Disney on Ice – it is going be cold, loud, unpredictable, chaos, crazy lighting, weird smells, and an uncomfortable chair to sit in
Look at the calendar to see what we have before or after: See if there is a possibiity that she has experienced a potentially sensory overload event before, and see if a sensory break can be added in beforehand
Begin to Prep E: even if this event has been planned for months, There is a certain way things need to be told to E.
- 1 Week Prior: you cannot tell E until 1 week before. And even then, at 1 week prior – you can only briefly mention it and not make a big deal.
- 3 Days Prior – you get big sister excited about it, but tell her to keep this a special secret.
- 2 Days Prior – you can then begin to do a brief outline of what the day will look like – break it down in to HUGE segments i.e. breakfast, disney on ice, lunch, nap, dinner
- The Day/Night Before – you can finally give her the minute details of the day. And make sure you do it at least 2x. 3x if you can. i.e. wakeup, breakfast, sensory break, get in car, park, line up, wait till the doors open, find seats, go get souvenirs, and food, sit down, go to the bathroom before the show starts……etc etc I hope you get the point

You do not realize how draining this way of life is, until you have a few good days (or hours) and you forget to envision and anticipate and plan. Something crazy happens in those first few hours of your unplanned day. Life is easy. You can hop in the car. And just take off. You can go where the wind blows. As long as you grab a jacket, you put your defenses down and just feel at ease. You forgot that life can be simple. But you know it’s not worth it.

And then it hits you. Like a bag of rocks shattering a pane of glass. Meltdown. Maybe an epic meltdown. Out of left field. Or was it? No. It was not. You know exactly what went wrong and where. You let your defenses down. You let life flow. Life was easy for a minute. You knew a simple life is out of reach and can never be achieved, therefore you stop trying.

And the cycle of guilt continues. You become hypervigilant once more. Until the next time you forget because things have been going so well.

E has special needs. I often forget about that label because she isn’t severe by any definition. Her needs are invisible. So it is easy to forget. But she has special needs, that requires extra. Extra energy, extra pain, extra tears, extra appointments. Extra love.

So what is PTSD? How did I develop it? Wait….I am just a mom.

I did not know that parents of special needs kiddos could develop PTSD. When I think of PTSD, I instantly think of Veterans, people that live in war zones, or are abused, or have seen or experienced something tragic happen.

Parents/caregivers of special needs kiddos? No way. How is that even possible?

There has been a lot of research:

So what happened? What was the root cause of my PTSD? Why do I feel as if the oxygen is crushing my lungs rather than inflating them? Why do I start crying at the drop of a hat or begin sweating profusely in certain situations? Why am I so hypervigilant? Why do I have barely enough motivation to blink?

February 16th, 2018. It was day 5 or 6 or 7 of E’s 9 day fever marathon. All she had, was a 101* fever. No other symptoms. But because of that, she was confined to our home. Until she had to go to the dr to get her fever checked.

February 16th. We drove up to the drs office. The same place that we have gone for 5 years. We parked.

I remember this day as if I experienced it just hours ago. I remember how I felt. I can still feel the adrenaline, the panic, rushing thru my veins. I still see her feet as they disappear. I close my eyes and see every single leaf on the rustling bush she hid in. I hear her screams as if it is still happening in front of me. I feel the crisp wet air tickling my skin.

Only this didnt happen hrs ago. And there is an added wall that I have to push thru in order to truly relive these details. Even as I am typing, there is a blockage in my throat, my stomach has sunk, my lungs unable to inflate, tears begin to pool in the corners of my eyes. And I cease typing for a few moments, asking myself if this is even worth it.

But I have to relive this. I have brushed the surface of it before. But it is time for me to relive the most painful moment in my life. Because if I do not….I will continue to drown.

February 16th, 2018. I turn off the car. I unbuckle. I reason with my child to do something (I cannot remember over what, but it was the final straw that broke her back). We open our doors. And next thing I know, E is screaming at me, and she bolts.

Straight for the street. I am in total shock at this point. I know she is a runner, but has never done something like this. By the time I unfreeze, it was only 5ish seconds but it felt like an eternity, but by the time I go after her, she is gone. Around the block.

Ok phew. She is on the sidewalk.

But damn she is fast. And I am overweight. And I cannot run. At all. I tried. But my poor health most definitely contributed to how this event unfolded.

I lost sight of her around the corner. I start looking in people’s yards. I hear her screaming. Thankfully not a blood curdling I am in distress scream. More like a Na-na-na-boo boo- you cant catch me scream, with a side of rebellion. I see her head as it runs to someones bushes in someones backyard.

She finally stopped! Phew. I can get h–….

Just kidding. There is only 1 of me and I can only block 1 exit (obviously). She bolts. Again. This time, when I get to the sidewalk, I go to the left based on blind faith.

Cars are zooming by.

I turn the corner and a kind stranger saw my distress and followed her for as long as she could….until she lost sight of her.

I keep walking. Totally out of breath. Tears streaming down my face. Panicked. Sweating. Afraid. The most intense migraine I have ever had, comes thundering into my skull.

Up until this point, I have spent hundreds, maybe a thousand, hours living thru my child’s worst meltdowns, holding her tight so her body relaxes, watching from afar as closely as possible when getting closer just escalates the situation. I have seen E’s soul disappear as her lid flips and takes control. I have bawled my eyes out as the hot shower burns my back, taking away some of my pain.

I have learned there is such a thing called sensory hangover. It is real. And FYI, it freaking sucks. I have also spent countless hours looking for different ideas to tackle issues. And I have spent countless more trying everything from here to there and back.

I know what makes my child tick. What triggers her. And I know exactly what she needs to ease the devastation of the storm. I know exactly what she needs that will help her storms pass as quickly as possible.

If that means one more cuddle when I know she is 2 hrs past her bedtime, then so be it. If that means one more drink of water, a cookie before dinner, a flip flop instead of a rainboot. Then so be it.

But today, I do not know where I went wrong. With every panicked step forward, the guilt gets heavier. And the self blame gets harsher.

Finally, I get to the other side of the block. No sight of her. I cannot hear her. I do not see anything rustling. The kind stranger cant stay to help. I dont blame her. And am very thankful regardless.

I run into the drs office to see if E went in there. I didnt think my words were coherent.

She wasnt in there.

So I call 911. I tried to remain calm. Do you know how hard it is to remain calm when your child has run off in a state of panic on the city while cars are zooming by? She has no sense of safety, or pain, or looking both ways (yes we have discussions often).

The 911 operator just about dispatches a police officer to come help. I turn around. I see the top of a head move in the car.

I run to the car. And she is there. Her storm is starting to pass. She still has a 101* fever. Maybe she is more exhausted than I think.

I told the 911 operator I found her and we are safe. She told me she would still have an officer follow up. I thank her. A nurse from the dr’s office came outside to check on us. We are safe.

Thank goodness it was the one time I have ever left my car unlocked. As soon as all doors are closed, I make sure to lock them immediately. Fate had other plans today.

I got in the car. I locked the doors. I didnt put my keys in. Instead, I cry. And I cry. And I cry.

The whole event unfolded in less than 20 minutes. But it felt like a lifetime of pure hell. Of pure, agonizing, hell.

And this event, changed me. It changed our family.

Due to our work schedules, I am the primary person to transport E to 100% of her appointments. And for the next couple months, she had to go with me to everything that happened after school.

When it was just her and I, I would begin sweating profusely, even at 32* outside. My stomach would churn. My lungs would tighten. My hypervigilance soared even more (didnt know it could….).

For the first time ever. I absolutely dreaded going out alone with my child. February 16th was the proverbial straw that broke the moms back. Up until then, I was always confident with whatever situation I found myself in when alone with E.

But after that date, no matter how small or easy of an outing, I started reliving that hellish overcast day.

I do not know what caused me to type PTSD in the search bar, but I did. I hit enter and started reading about symptoms and signs and causes.

Ok. I thought. Sounds familiar. But no. I couldn’t have PTSD. I am just a fierce loving mama. So I added terms like Autism, special needs, parents.

And I hit enter.

I read story after story. Painful word after painful word. I cried. There is no way I could have PTSD. And if I did, I have to just file it away. I do not have time to deal with it. My children were falling apart.

Side note: it is funny how I know I need to put my oxygen mask on first, but I rarely do. I always put my needs last. And always feel guilty for the mere thought of having needs. Hence why I am on this journey now.

Moving on. I acknowledged PTSD. I found a counselor. 5 months later and I still havent even told my counselor about having PTSD.

But there is a reason for that. Once we transitioned L to E, my PTSD seemed to subside. Our lives started looking bright. E was so much happier. And healthier. Storms were less intense and farther between. Or maybe it is because I am a great liar, I overcompensate, and am great at putting on a fake face to appease the outside world. They don’t need to know about my pain.

I don’t even know about my pain.

I could breathe again. Parenting E became second nature. My 10 step anticipation started occurring instinctively and without requiring much extra thought. Ahhhhhh.

I was pretty thankful. And pretty optimistic about this school year. The last half of last year, was intense. We almost pulled E out of kinder. I was getting phone calls daily. I started jumping whenever the phone rang. I became afraid of my phone. When the schools number pulled up, I had to tell myself to breathe.

But this year? It was going to be different. It had to be.

And that brings us to my current PTSD episode? event? trigger? hangover? (I honestly have no idea what to call feeling like my entire body is medically induced coma from the traumatic initial event) I am acknowledging it. I am acknowledging that I am in a very dark and lonely place.

But here we are. It is not even the 3rd month of school. And my phone is ringing almost daily. And when the restricted call pops up….I know it is serious. It is the principal calling from his personal phone because he cannot get to a school phone due to the unfolding situation.

Each conversation, a little more distressing than the last. At least last year, it was about E having toileting accidents, or B accidentally eating slime (non-toxic), or B practicing her TKD moves on a kid for fun.

This year, the calls are about E having an unsafe body, not wanting to listen, saying school is hard, not making friends, locking herself in the bathroom, destroying her classroom, running off on the playground, screaming at the top of her lungs, hurting 3 teachers.

Having a kiddo with special needs, will never change. A special needs kiddo cannot be cured. They will always depend on us. And because of this, because of how much energy I have to focus on each event that happens, on each storm and bathroom lock in, I have consciously isolated myself, and create a huge ocean where it is just E and I.

I have friends. But I cannot get pass this idea that I do not want to be a burden to them. No one else knows. And even if they did – they don’t truly understand the emotional beating I experience on the daily. So I hold it all in. I can only unload so much on my husband. And my mom, well that is a different story for a different day.

I have family. But we dont get invited to much. They never truly check in with me, other than a facebook comment here and a like there. But I don’t do the same to them. Which adds to my guilty. That no wonder people don’t care. I treat them terribly. But ugh, that requires so much energy that you can tell I have at the ready huh?

I have depression on top of that. It is part of me. Part of my genetics. I will always have depression. I will always have to control my depression. Every day I have to make a conscious decision of who is going to win that day.

I have PTSD. Tears pool in my eyes but I do not allow myself to let them fall. I am just beginning to realize that on my bad days, I yearn for sleep. To just close my eyes and not deal with the world around me. But the mere thought of that causes intense feelings of guilt. Housework needs to be done. In fact, I have to force myself to do the most mundane of things….like going to the bathroom.

I have special kids. And I need to put my oxygen on first. I have to. My kids will continue to have challenges. They need me at my best.

I am the on call hostage negotiator for the school. I have to always be ready to give the school ideas on why something happened. And the only way to get that answer – is to come up with perfectly worded questions to obtain the required result. For instance, you cannot ask E open ended questions – the answer will always, ALWAYS be No. If there are choices involved – you can ONLY provide 2 choices. More than that and you risk a non-answer. And make sure each choice – is something that is desirable to you.

For instance, if you need her to put on her coat and she is refusing, you ask her – do you want to put on your coat or do you want me to help you put on your coat? The result from either ends in her putting on her coat. Do not ask her – do you want to put it on? That will be a No.

I am exhausted just thinking how exhausting, and oh so not simple, our life is.

I must always have an answer, a solution, a workaround. Always. I have to be on speaker phone to negotiate with my child to unlock the bathroom stall.

If I keep letting this feeling of deep despair drown me, I will not be there for when my children need me. And that is not an option. (No. I am not going to hurt myself. Instead, I would withdraw to a point that I couldn’t interact)

The combination of stress at work, and being a special needs parent, is eating me alive. But I cannot quit my job. So I have to deal.

But now that I have finally acknowledged and admitted that I have PTSD, that it is possible for special needs parents to experience PTSD, and that it is OK to breath for myself again.

There is hope that I am on the right path in discovering how to love myself.

There is hope that everything will be ok

There is hope for healing.

Now to just find the motivational courage to heal.

Links:

Autism Moms Have stress similar to Combat Soldiers by Michelle Diament

8 Truths about PTSD in Parents of Kids with Special Needs by Jolene

http://differentdream.com/2015/06/ptsd-and-special-needs-parents-calling-it-like-it-is/

https://www.psychiatry.org/patients-families/ptsd/what-is-ptsd

https://www.psychologytoday.com/us/blog/stress-relief/201707/what-is-ptsd-exactly

https://www.nhs.uk/conditions/post-traumatic-stress-disorder-ptsd/causes/

https://psychcentral.com/disorders/ptsd/posttraumatic-stress-disorder-ptsd-causes/