Thursday, June 29, 2017

PART:2 The Behind The Scenes Story of Being An Autistic Parent to an Autistic Child.

Let me preface with the fact that this is a follow up to THIS (CLICK) post. I also have another child who is autistic but they are pretty much a mellower version of me. They also have a natural ENFJ Mother Teresa sort of personality so they end up being probably the more stable presence in the household on most days. They also fall through the cracks sometimes because they are the most balanced. My point in mentioning this is to show that each situation is unique and sometimes parenting an Autistic child is easier, depending on all the varied factors. The ENFJ struggles are more involved in severe anxiety issues and feeling a general sense of "nerdy quirkiness" in the outer world, but they feel completely comfortable at home, with me, which makes life at home infinitely easier.

Birth order also plays a part as well as gender. There are MANY factors that play into all of this. I also could write another post about being a Dyspraxic parent to a Dyspraxic child which is a whole other ballgame. I find it something I can handle on most days, oddly, because Dyspraxia is actually more of struggle for me in the day to day disabilities. It is also probably because our dyspraxic child is a marshmallow of kindness, so it may be easier for me to help out? (Another post for another time.) I also want to state I adore ALL my children. I like parenting most days and unschooling for the most part. But sometimes it gets to be a little much. I am going to focus on those times below. I am also going to write like I talk when I am in heightened states of awareness and before I edit. Which means my post may take tangents and show some of my quirky tendencies more than usual. I am doing this for my fellow Autistics who parent autistic children. I want them to know that I DO have autistic traits and I DO struggle in varied ways...and I hope this can help in some way...And yes those dark circles have three layers of make up and are still showing...

I didn't tell you what I did while my Z's timer was on 15 minutes, before I went to check on Z. I ranted while I paced the house, I crouched in a corner, I tried to call my main three supports in the order I prefer to find them; Husband, Best Kindred, and Mother. When no one answered I ended up ranting a text message to Hubby about single parenting most of the year and how I am literally going to break into pieces of a fragmented self. Yes, he tends to chuckle at these texts with me in hindsight later but at the time I am very serious about quitting my entire life and becoming an Ostrich. Apparently, I am funny when I am distressed. Part of it is a coping mechanism. But yes, you heard right, I said an Ostrich. I will often picture myself as an Ostrich, imagining the joyous bliss of burying my head in warm, enveloping sand. Writing it out, I realize it's actually not that comforting of an image. Things I hold on to for years can seem different when I write them out, and suddenly I am realizing that this being an Ostrich is actually not appealing at all. Maybe I should change the image to something that will explain the feelings I had because it's actually a terrible image!

I didn't think the Ostrich theory through... Ok, the feelings I had when thinking of being an Ostrich are probably similar to picturing oneself in a cocoon of quick safety, able to escape the world at large with a quick action. Maybe I should have used a mouse burrowing into a cozy home but I dislike disease carriers so maybe a ...hhmmmm what animal doesn't carry disease?... I've got it! A HOBBIT! It's not an animal but it's not exactly human either. Yes, that is way better. I will picture myself a Hobbit, shutting myself into my Hobbit hole and bolting the bright yellow door, sitting by the fire and eating bits of yummy cheese, fruit and meat while sipping on comforting tea. That feeling right there is what I felt also when I was an Ostrich. That borrowing under ground sort of thing which a Hobbit does nicely at conveying. 

Anyway, when the timer was up, I quickly rubbed my eyes, took a few deep breathes and did what I do when I am not safe enough to meltdown in places- I go into trauma emergency mode. I shut off. I shut down. I tell myself that I will process and feel the emotions later but that my child requires my unemotional attention. This means that later I am going to be a mess, but for the time being I am the perfect little robot. I can pretend to be in good humour, I can smile even though it doesn't reach my soul, and most importantly, I can get through the motions. Once I put on this pretend body armour of metal technology on, I walk into the room and press parent mode on my inner psyche. 

Next, I monologue. Monologuing is an important part of this equation because when I monologue I am in writing mode. My children know not to interrupt mommy when she is writing or monologuing. I will SNAP. If I am going to be harsh, it will be when I am interrupted in these two activities. Why? Because I am in FLOW, I am getting words and thoughts out that I normally have trouble expressing. The words that get stuck for days, that I know I am feeling but can't fully explain until the computer is in front of me, or I am in a verbal monologue flow triggered by some great insight, are suddenly there and I need to get them out. This is why I talk to my best kindred a lot on the phone. I hate the phone otherwise but with her, someone who is insanely like me but an INTJ, we both take turns monologuing and processing all of our thoughts on past, present and future. She is my sanity and also the reason why I tend to function at a higher level when I struggle...because I was able to express it to someone, on my own time, over two hours of phone time, and know if I need to talk some more I can call her again. It feels safe. 

When I snap, I am harsh. I use harsh tones and say quick cutting remarks like, "Get out of my space or you will forever regret that you walked in my door." or "I don't care what you eat or what you do right now children, just LEAVE ME ALONE!" or the simple, "GET OUT. We will talk later unless it is a dire emergency...." followed with an apparent death glare I have that works efficiently most of the time. My children love it generally when I write or talk to my Kindred because it means they can rule the house...My husband also knows not to interrupt when I write. He has not always applied this learning when I am monologuing but my distressed sounds or close to tear responses, if he does interrupt a monologue, is enough to shut him up for at least the twenty minutes of speaking I need to feel "normal" again. Truthfully, it usually takes closer to an hour...

This monologue ish way of mine serves me well in crisis situations with my children when I am expected to have a game plan. I have NO IDEA what the game plan is going into a situation. I did not know I was going to give my son three letters to write until I was halfway through my monologue about the situation. It's kind of like the Internet. I am talking but I am accessing all the stored information in my brain pertinent to the situation. In this case it was parenting books I had read, triggers from posts about autism, stuff I have written, and general movies I have emulated that all came together to focus me on what I wished to convey. I am often proud of myself after these moments because I DO tend to randomly parent effectively.

Unfortunately, this isn't always the case. If I get interrupted or if I'm over tired or sick, I can't monologue. Which means, I will not be effective at communicating what needs to happen... Sometimes my children will literally be dealt with a FULL WEEK after an incident. Once I have processed effectively, come up with a plan and maybe been triggered into thinking about the incident again, I will seemingly out of nowhere suddenly "deal" with the situation. This causes some confusion though they say they are used to mommy's random musings, lectures, and out of the moment game plans. There is usually a collective "Uh Oh" when I utter the words, "Here is the deal..."

Yesterday there was another incident. I ended up actually sliding my child across the floor in their slippery socks, by force to my mother's room. I was lucky we were there and also that the floor was slick hardwood because my child is WAY stronger than me. I was DONE. I had done a favour for said child, and they were mad because I brought a book, just in case they wanted to read, from our house while they were being looked after. The book was thrown across the floor with, "I told you NOT to bring my book. I told you I am not going to read. Now I am not going to read that book EVER again. You are a horrible parent. You don't listen..." rant, rant, rant. I was tired. I was on my way out the door to spend the day with my husband and ENFJ child in another city. So, after squelching my great urge to smack the child- which I NEVER do by the way, but I have to be honest and say that the thought does seem tempting at times, I firmly said, "Ok let's go talk to Nanna. I can't handle this today." To which the child fought me so I dragged them by their sleeves across the floor to the room because my mother was not responding to my calls. Yup, not my best moment. The child was not hurt and in another circumstance they probably would have had fun sliding across the floor in socked feet. 

My mother mediated right away and immediately my child stopped physically fighting me, but the defiance was a whole other matter.  She explained that they were not the boss. Something I am uncomfortable with as I don't like being the boss or pulling any authority cards in general. I am a guide as a parent but I like to give my children freedom and equality whenever I can. Probably why my child thinks they do run the house...downsides and benefits to everything I suppose. SO I cringed at that statement but let her go on. The child interrupted with, "I said NO to her before. I said NO. She should have listened. It is MY book and MY brain and I don't want to read." To which my mother replied, "Sometimes parents get to choose activities for you that they know you will benefit from. I asked your mother to go home and get the book for you to have just in case. She went out of her way to grab it and it's simply an option. You should tell her thank you and let her go. You also need to say sorry for what you have said to her..." The discussion went on for ten minutes and blatant refusals to say sorry. I ended up leaving because I was fighting back tears and the child was clearly not in a mood to communicate. I left them in my mother's capable hands, muttered the obligatory leaving the house to go on the road, 'I love you,' and left.

My mom's texting conversation lasted the first ten minutes of the drive, and then my ENFJ child and husband had to hear my monologue for the last 45 minutes. That is how long I took to begin to "normalize" and not be in a heightened state of emotion. An HOUR. Even then, it takes all my self control to stuff it when my other child says, "Ok mom. It's time to move on. Z is not here. Let's enjoy our day and you can think about it later." Point taken.

Here is a snippet of my mother's texts:
Me: I've fantasized about boarding school so much lately . Z breaks me every day. Every day since January. I think Z can be ok sometimes but not usually with me ...
Mom/ S:
You've had good days too.  Remember when it's hard that you are seeing things through your autistic eyes and it seems it's always hard.Those are the times when you forget all the positive and good.Boarding school would break Z.  Z is ok with you too.This will pass and you will get through it.  However, it is also why you need breaks sometimes. Those times can even be Hubby taking the time when he's home to be with and talk to Z about growing up, respecting  mom and women in general, respecting those in authority, etc. all while spending time doing something with Z.  Sometimes with the other kids but sometimes one on one.. at a difficult age, starting to become a grown up yet still a child. Changes in body, emotions, etc. Those all affect more because of the autism.  You will get through this. You can do this. And you are doing this. Sometimes you may not always respond in the best way but overall, you're doing it with grace and beauty. You have a lot of that, you just forget sometimes when you're overwhelmed.

Remember, you are a great mom, you're doing a good job and you're entitled to times of frustration and breaks away.  You need that. All of us moms have times when we wish we had responded differently or we wish we could take back some words we allowed to escape but the good thing is that we are human. We recognize that we don't always have all the answers but we plod on doing the best we can. With you, the best you can is a pretty darn good job. So take a deep breath, enjoy your time away knowing Z is safe, you can relax and you don't even have to think about the issues that arise. You just have you time. What I meant to say was the good thing is our kids are pretty forgiving, they're not as fragile as we think and it doesn't hurt them to have time away.  It also doesn't hurt them to see how their words and actions can hurt and frustrate their parents and others as well.  That's how they learn."

Her support helped the situation but I needed more processing time. That night, after a long day, Z came up the stairs and apologized for being unkind. Then Z started arguing with me again about why Z was right and I smiled and said, "Let's just drop it for now. I'm sure you have points but that would defeat the moment of peace right now. I actually was just bringing it as an option and not requiring you to read it but for you it's about the fact that I dared to bring it out of the house at all. It's bed time kiddo. I love you and you are special."

And then I stayed up till four in the morning stressing about life. You think I'd just take the apology and sleep peacefully but NOPE. I wrote on a safe place I have with a few close friends, " I don't know how to be a mom anymore to one of my children. Sometimes I don't even know how to be a person. Actually, generally I feel I don't know how to person properly. I can't sleep or eat right, talk appropriately or posture correctly nor do I express normally or act accordingly or normalize to the masses. Some days I celebrate this alien status. At nights I tend to torture myself with them. But really, I know when I feel empty that I'm fighting burn out, sleep depravity or depression ... and I fight every day for perspective that I think I'm good at and also gratitude but that doesn't change the fact that on some days or nights ... I don't know how to be a person ..."

That is how I have felt lately. I don't know how to be a person. Of course, I received some lovely support from a core group of ladies which I will leave in the comments below because their wisdom is crucial to my well being and I believe it may benefit some readers who struggle with the same issues. Because sometimes, the inner dialogue in our heads can be created by the outer world. My blog is called the World We Create from that sociological concept. We create in part what is around and in us...what we adhere to and what we choose not to do...we also sometimes are innocent bystanders or victims of circumstance but in everything there is a bit of ability to be our own change. Most of the time anyway. Not all of the time. I have no complete answers today. I still feel like I don't know how to be a person. But I wanted to write out my experience behind the scenes, to show that these struggles can come with even parenting milestones. I said most of the "right" things when dealing with Z last week. I often will come up with great game plans...only to face the same situation again and again. It's part of life. In disability and in ability. I wanted to show that side of angst even amongst victory.

Not feeling like a person or knowing how to be one...is another matter for another post or maybe I will forgo that one all together and deal with it on my own or in therapy...Dear therapist, when you read this remember it for our always growing list. Ha ha. Anyway, I have some moments to celebrate and I am grateful. I love my life and the comments will show other aspects of the equation once I get them transferred here...so do read them for other's wisdom... But it also is a glorious mess. A tough struggle in the midst of wonder and beauty. Alice in wonderland. Complex and full of dangers and mystery but also fantastical experiences and forever friendships and smoking caterpillars. Yup, my life. Also, the song choices complete this post so do scroll below for explanations.



Song Choice: When I was defeated after one of these moments I put three songs on repeat to a few silent tears. The songs were:

Blackbird sung by Sara Mclachlan (CLICK) "Take these sunken eyes and learn to see...Blackbird fly until the light of a dark, black night. Blackbird singing in the dead of night, take these broken wings and learn to fly...." I feel like my eyes are sunken most of the time lately and I am the blackbird in the dead of night hoping to learn to fly again. And I know this is my life to be broken, learn to fly, and break all over again...I think we all have this in a way and people with disabilities or minorities may feel it more acutely.


Landslide by Fleetwood Mac (Click) This song I cried the most on because the lyrics are SO accurate. "I took my love and took it down. Climbed a mountain and I turned around. And I saw my reflection in the snow covered hills till the landslide brought me down. Oh mirror in the sky what is love? Can the child in my heart rise above? Can I sail through the changing ocean tides. Can I handle the seasons of my life? ... Well, I've been afraid of changing because I built my life around you. But time makes you bolder even children get older, and I'm getting older too. Took my love and I took it down..." These lyrics are exactly how I feel in poetic terms. Can the child in my heart rise above? A question I constantly ask my child life self. Can I handle the seasons of my life? Aspies especially struggle with change and this lyric inspires both fear and comfort in me. If a musician asks it- I can ask it. "Even children get older..." A reminder that this too shall pass and I will miss most of it. In fact, I can't think of it ending or I feel like I am suffocating. I adore my children even when it's tough. "I'm getting older too..." I felt this lyric when I was 19. Sometimes I feel SO OLD. Being an Aspie is an odd mix of Old soul and Child forever. Sometimes the old soul and the chronic illness makes me feel an age that does not even exist...Maybe it does in Elf years...

And Hey Jude by the Beatles (Click HERE) "...Remember to let her into your heart. Then you can start. To make it better... Hey Jude, Don't make it bad. Take a sad song and make it better. Hey Jude, Don't be afraid, You were made to go out and get her. The minute you let her under your skin then you begin to make it better. And anytime you feel the pain, Hey jude, refrain. Don't carry the world upon your shoulder. For well you know, that it's a fool, who plays it cool, by making his world a little colder..." I have always been comforted by this song since my obsession with the Beatles in Junior High. Heck, the Beatles and Lennon (and Elvis) got me through Junior high! This song in particular has showed up every time I have struggled with someone else. It is my reminder to step back and let the pain and the person into my heart in some way or form. Because then I can start to heal and get better. I also find the lyrics about the fool who plays it cool comforting because I will NEVER be a person who can be "cool and collected." I am passionate and moody... and this song always made me feel better about my odd, sensitive self. I often think that part of my processing is to allow myself to feel so deeply and to express that into the world the way I know how...which is usually writing. Taking a sad song and trying to make it a little better... "Don't carry the world upon your shoulder little miss INFJ" ( that is what I say to myself because I have a tendency to do this when I don't implement boundaries.)

15 comments:

Anonymous said...

Personing and adulting and parenting are just plain hard... can we just not for a while and get our crap together enough to function? Why can't time stop for these things? Love you friend.I think you're a fantastic person... thinking of you as you work through your days. You are loved. You are worthy. And even when you don't feel like it and you feel like you are failing your child who you feel like you don't know how to parent... you are still the best mother for them and no one else could love them like you even when they feel unlovable.- EF

Kmarie A. said...

yes why can't we?;) time - how I loathe and love thee ...thank you... it seems like a lot of these days are just work ... work to BE. It was work for me to even do a city trip and force myself to not be cranky after shopping - it was work for me to make it a positive experience for my sweetie who needed the break ... that stuff didn't used to be work but it has been all year... even the fun stuff often feels like work but I try not to have that as my focus so I don't sound like complainy pants or not being downers to everyone constantly but yup yup yup. ❤️thank you. That helps... I suppose I am but man it sometimes feels like I'm not. And how does one parent a child who no longer wants to be parented but is still to young to not? I'm not sure... stages I suppose but really most of it comes down to me and I'm not sure how to even person through a day anymore. They all run together but the nights are agonizing long with not much done or people loved and Day comes again and I trudge through and do what exactly? A few chores? I dunno ... I don't know 🤷‍♀️ but thank you and your words soothed and you are a dear friend for giving

Anonymous said...

I can relate to your feelings even though I don't have kids. I am going through a very similar situation. My family is around me but things are getting harder. Maybe every little extra stress is adding up to your normal everyday stress level. Maybe you need to stop parenting for a while. Maybe you need to let go of all responsibilities for a w should sit outside in the sun or inside your room, alone and write down your thoughts on a journal. Maybe you need more alone time and just breathe and reflect with with your favorite food or drink. Maybe you should go to your Dad's place and spend sometime in the nature alone, to reflect. You need to feel good to feel better. I hope you find a way.Chronic illness and sickness can do this to us and bring such emptiness. Also, sorry for the typos above, I wrote very fast -Alice

Kmarie A. said...

you are right... I keep forgetting or maybe try to hard to forget because I'm sick of being ill... I don't wish to be defined by illness but it is a part of me and is a dollar coaster if good and bad days... I do think I'd benefit guilt free time alone but I'm worried that if u do I'll just never want to go back to parenting ... also that I'll miss out as they are already growing so old and I adore them most of the time and also that I'll just sleep the whole time - days and days ... and then what? I'm not sure ... but those are good ideas and you give a fresh perspective on the way chronic illness can affect as well which I actually forgot about too ... I don't know 🤷‍♀️ but thank you 😊

Anonymous said...

I understand. I thought maybe for a day you can unwind and be with nature if that helps you. Even in your own home( backyard or where there is greenery) in the midst of nature. It is not a solution but it helped me to get some perspective.- Alice

Anonymous said...

I feel that way with my littlest. We are very similar but as to parenting her, she is a mystery . I feel like I'm doing everything wrong. I agree with Alice about chronic illness. And me personally I keep comparing myself to who I was before and who I am now. It's so disheartening .- G

Anonymous said...

One Thot got that came to me is that you're with them all the time. HSing works in many ways for you but sometimes the kids need outside people to shape them a bit and take the pressure off of you. I wonder if you need a routine away time from each other. It may be tricky to find a place or time if it's not school. I know to a small degree how u say its work to do diff things. I find that it's work to do diff thighs with my youngest - like I have to force myself to play bball or go outside with him. I try to find things we both like. What is it you feel like doing usually? I like going biking with the kids in town. I don't love city trips that are long anymore. I think what I feel is ok to feel as we can't fake stuff. But I think it would help if you got into thyroid meds maybe. I feel mine have helped a bit. But idk I do get what you mean as I experience some of the same things you do just to a lesser degree maybe. It's hard. I don't have an answer. But I think you're great. And you're a good mom. And yes things are magnified at night. I worry ten times more in the night. I'm sorry.- CM

Anonymous said...

Oh, friend. 😢❤️It has been a huge year with loss on multiple levels for all of you. All of this on top of your already existing everyday life stuff and dealing with your health is A LOT to handle. It only makes sense that it has taken its toll. Night can certainly magnify those things that feel like shortcomings in our life and when they relate directly to our children, it makes it that much more difficult. May todays light ring moments of connection for you. Please let me know if there is anything that I can do. Relationships of all kinds can be so difficult to navigate. Even with all the knowledge backing what makes us, us...we can be so incredibly complex and tiny factors can throw things off kilter so quickly. Anyway...all this to say, I hope you catch glimpses of you today that offer hope even amidst all of this. If ever you need a solitary stroll in nature or just want to take in the view you are always welcome out here. ❤️ LM

Kmarie A. said...

Alice- thank you - that is a great suggestion. G- yes a mystery is tough. I feel like that sometimes too...and you are right...I do that too and it is disheartening! @ CMThat is a good thought. You are right...I think I need less pressure sometimes and for Z to at least go somewhere regularly but Im not sure how to make that happen...It is so much work to do different things or be different! Good points about not faking stuff...Yes I am seeing another doctor in sept hopefully...It is hard. I am sorry you experience it too. Thank you. I think you are a great amazing mom too to great innocent kids. I worry more at night too...sigh. Thanks.xo @ LM Thank you. That is true ...maybe it is a lot to handle. I guess it has taken it's toll... Yes night does mangify it....I got barely any sleep and this day I will need to take it easy and trudge through. I appreciate the offer. Yes they can...so complex. Its encouraging to hear. Thank you. I appreciate that.

Anonymous said...

The ostrich thing now that you mention it sounds terrible... sand and my head buried... no thank you. How about wrapped in a dark warm quilt that has magical make everyone go away powers? 😉 that sounds oh so lovely.
Oh man... I so monologue as well and the boys know if they intrupt me it is NOT pretty...
Love this last post K... just in that sharing the struggle and the thoughts are just so refreshing to not feel alone in feelings towards the dark side of being a parent. - MLW

Anonymous said...

You did it again. In my head, in my life. This is it exactly . In fact, it is today more than it's been in a long time . Hubby is off from now til Tuesday and my whole being is thrown off and my littlest too . I hate being interrupted too when writing and I will snap then , too. I do the text thing too and the words I'm a single parent , often when I'm totally melting down and you know what ? I don't person well either. At all. I'm in self pity mode today. I advocate for my kids and even for my husband and today I'd like someone besides me to advocate for me today. Just ick. Thank you for writing this . I needed that kind of honesty because truly is my life, too. Hang in there and I will too. Xo G

Kmarie A. said...

I soooo get thrown off by schedules that are different too. Lol yes we have a lot in common.
Sometimes self pity mode is needed...I'm glad it met a need!
Ok we will hang in there together! Xo

Amy said...

Oh man... these posts on autism are priceless to me. I just gobble them up! I have so much to learn, K! I think I need to sit down and email you questions or voice message you some. Parenting is hard, but for you and Philip - you guys are fucking rock stars! Not perfect or that you even have it all figured out, but you two are my heroes. For you, to actually BE autistic and parenting kids that are HSP and one that is autistic is reaaaaaaally something to behold. I so wish we were neighbors, and I could bring over some yummy gluten free food and we could drink tea and talk.

So appreciate you and all you share here.

Kmarie A. said...

Amy: I am so glad that they are priceless to you..I think maybe I have the advantage BEING autistic even tho it makes it tougher in some ways which is why I try to write about it...cuz I get both perspectives a bit and can help others who genuinely wish to know their kids but may not have that insider perspective.
Ha ha. Thank Rockstars! I like that:) Two are Autistic, one is Dyspraxic with HSP and Multiple Learning disabilities including .75 processing speed. But they are all amazing and teach me so much.
Yes feel free to email questions or voice mail some! Im totally down with that! I would love to partake of your gluten free treats over tea and talk about these things...they are my passion after all...sigh. That sounds delightful!:)

Amy said...

Sorry I mean ENFP - He's an ENFP. I always get those two confused. Ha!