Unredeemable?; The Reckoning: Ruthless Redemption, Repentance and Reconciliation.

Post Note: This post is NOT about TRAUMA of any sort. Nor is it inherently about grief, mental illness, depression or anxiety. While this could apply in certain ways, because just like an arm pain can indicate heart or gut issues, a singular suffering should not be boxed up into one category, I want to be clear that, for myself, this post is about the pain of facing oneself when parts of self need to grow. This IS about self reflection, self growth and a requirement of honest mirrors. This post is more focused on issues that are self growth related, and should not be mixed up with any diagnosis or need that may require legitimate pills, therapy, or clinical diagnosis. I am not a doctor. This is most assuredly a post on reckoning, redemption, ruthless mirrors, repentance and reconciliation....handily all the "R's" *

I stood in front of a nine foot mirror in a home of 12 foot ceilings. Even though my home is notorious for hosting at least 68 mirrors, most of them are placed to reflect light and not the full reflection of a person. So this was the first time I had to seriously face my physical self. I had been battling self esteem issues since January, most of which stemmed from extremely low iron and medical issues (which do set some of the foundation for this post and are worth mentioning but are NOT what this post is about.) When health is sputtering along, it is hard for the rest of a BEING to fully flourish, but I try to give it my best. However, I knew something wasn't right, but the revelations seemed to be slowly spitting out truths instead of revealing the whole. Until I stood in front of that mirror.

The mirror was only part of the revelation. I looked upon my full self and realized I didn't like what I saw. It wasn't just the chronic illness weight and inflammation or the ridiculous notion that I was completely hideous ( I know when I am being dramatic)...It was the fact that the girl looking back was almost unrecognizable and she was ME. In that moment I knew there would be a reckoning.

It was an overnight holiday that was perfect in every way. I had nothing to blame but myself, I was up until 5 am and woke to a leg cramp at 7. The night was beautifully full of stars overlooking a mountain view outside my 9 foot glassed door. A trusted friend was sleeping in the home a few doors down. My belly was full of good food. The king size bed was even more comfortable than my beloved bed...and yet I was tortured. Insomnia can be familiar to me, but this was profound reckoning. All the revelations hit me. Concealed was revealed. I saw my vices, my created pain ( not legitimate pain that needs support but pain I had created by sitting in habits I could change), and my cruelty towards self and others. I faced the mirror of self...

"I know this hurts real bad right now. I know you feel mad and sad right now. But the sky isn't falling- that's just the rain. It's safe to just call this...pain. Girl I've been there, Yea life isn't fair It's okay to not be all right, just go ahead and cry... It might sound insane but I promise one day you're gonna be thanking you're lucky stars for all this pain."- Ingrid Andreas lyrics - Pain.

I got through the rest of my holiday by sheer grit. My perfect holiday ruined only by my own BEING. I saw my incapabilities clearly, my selfishness, my inability to adjust the way I would like, and my self loathing foamed. I saw the issues I was looking for in my marriage, parenting, and self...the accounts I had been trying to settle since January were ending. The five hour trip home consisted of me bawling my eyes out through sniffled repentance. Specifically with my husband because he was my travelling partner, not only through the holiday and life, but literally. I saw my part in the equation I could not figure out. While he also took ownership, the important parts I had missed before, came to the surface with ruthless intensity. I had a lot to reconcile. 

I've often shied away from the word repentance due to my upbringing. It was misused for varied agendas. But sometimes it is the only word that can state the absolute sorrow at actions that have been done or love that has been missed. Being penitent, or showing remorse, for one's misdeeds, and confessing such to all that IS, oneself and those loved, brings about a different mirror. At first it's a ruthless light that shows all the cracks, crinkles, and bruises. Yet, interestingly enough, after the refining burning of light, there is astounding peace and grace. Repentance suddenly feels like a gift that opens up to true reconciliation. A healing. 

"Without the pain, how would you know? What things to change and what stays the same? And which parts of you still have to grow? It can be ruthless, yeah, I've been there too. But you're gonna get through this pain." - Ingrid Andreas lyrics - Pain.

I'm not where I want to be, yet in those moments of pain, and the days following, I saw not only whom I COULD be, but also bits of light inside that I did not know I had. It is going to take courage to grow. Growth is painful. It's humbling. And there are honestly parts of me that will not, in this lifetime, be mine to fully grasp. Because self improvement is limiting too. There is a point where Grace enters in. The broken tea cup mended with gold still required someone else to make it beautiful. Sometimes, it is the cracks that show us where we need the most Light.

There is a different sort of pain in facing oneself. It's different from trauma done upon you. It is different than mental illness needing support. It is different from being a victim or wallowing in self pity. It's the type of pain that comes in childbirth. It is for a purpose. It changes the inside and outside in a short span of time. It is ruthless yet can harness aspects of joy that will eventually grow into peace. What have I lost by wallowing? What have I lost by not facing the mirror sooner? What I have lost in the reckoning? Perhaps all the good lost is redeemed, but I will not fully see it with my mortal eyes? Perhaps I gained more than I lost in the end? Maybe I needed the time to fully face the mirror? 

I only know that ruthless redemption became a balm. For instance, when I reconciled the issues I clearly saw and owned my part in my marriage story (which is fairly a healthy marriage, but I still had to face criticism and derisions I had regularly foisted upon my husband), and when I genuinely cried true apologies with repentance and noted plans for behavioural change...my husband looked at me...and I saw a glimpse of that ruthless redemption. I saw the pain I caused clearly, which hurt even more, but mixed in that was a love that encompassed it all. Mirrored back through his eyes was grace. Reconciliation on the heels of pain. How much more could a Divine presence give?

I've always had a strong faith in all that IS. While I have not adhered, at points, to certain religious standards (and probably never fully will) or institutions...I believe in wrestling with God, instead of the man made ideas or institutions about ALL THAT IS. So of course, this stance encompasses all that I am. I am not a true evangelical (my roots) in that, I don't like to outright state things fully. I prefer to LIVE and let GOD.  I believe God is so much more than my ideas and that powerful presence does not really need me to fight  Divine battles. I also believe those that are different from me, or who do not believe in a Presence, have just as much to give and receive on this plain. I have many Atheist friends whom have turned me, for the better, into a person with more questions than answers. I believe ALL THAT IS GOOD comes from God. Which means, that a lot in life is BREATHED. I'm not one for major sin dialogues. However, there is legitimacy in redemption, repentance and reconciliation. A person can feel the difference when it happens on any level. 

With my children, I saw the need for the same process of asking for forgiveness for my harsh approach this year. When did I become hard? I saw the root, and while some of it CAN be explained or understood, there is another part of it that not only has to be owned, but given up, to become more than I am. I also need to ask for forgiveness because I DID harm them in my tones and eye rolls. A parent is supposed to be a well of guidance, giving, grace and loving support. While I will not be perfect, nor should they expect perfection, they should expect me to reconcile when I have wronged. As I expect the same from them. Without this dialogue I feel we are missing so much Light in the end.

It's true that when one walks through a refining process, there is more necessary pain, than joy. I have cried more in this week than I usually do in a year. And the hits keep coming. Unexpected shadows have creeped up to deal with. I've shattered some hearts including my own. My thoughts can get dark. Yet, acknowledging this is necessary for the Light to seep in. Changes are also becoming part of the process. Slowly behaviour is being refined. Grace covers the rest. "Good person, how do you do it? Do you just wake up with a smile on your face? Good person, what does it look like seeing the world as a happy place? I'm trying to turn the page, do you think I have what it takes? Cause I have cheated and lied, and made people cry, but I pray for the ones that I love every night. And I've shattered some hearts and my thoughts get dark, but I'd stop for a stranger who is falling apart. I'm still learning. Good, good person. Do you ever lose it when somebody steals that one last parking spot? Good person, Do you ever say no? Does the high road get lonely? Do you ever pull off?...Have you cheated and lied or made people cry? The right hand of God, tell me what is it like to throw all the stones? But all mirrors and smoke, they come to my show, but you won't let me go behind the curtain. Good, Good person... Tell me how, tell me how to be a good, good person...I'm trying to turn the page..." - Ingrid Andress - Good Person lyrics.

                                                                 

Song choices: 

Un redeemable from Spirited: 

https://m.youtube.com/watch?v=EQN3gvu9oZ

Pain- Ingrid Andress

Good Person- Ingrid Andress

From An Autistic; How To Navigate Covid19 as Differently Abled Person Or a Caregiver to Neurodiverse People. Navigating Differences During Crisis.

*I have been asked to write a post to help autistics especially deal with this time period at Home while healthy (other subjects are another post) I was also told that Neurotypical people could also benefit from the post...I can only hope this will help. I will be mostly referencing other posts that I feel should be read which are mostly WAY shorter than mine so yay! (I also tried to make mine shorter so you would have time to read the articles.)*

Changes can be especially hard on Autistics and all the people who have differently wired brains from the majority or differently abled bodies. We even struggle with happy changes. So when a societal change happens and it affects all areas of our lives, we are going to probably experience more meltdowns, behavioural issues, anxiety or executive functioning fails. Even if we are benefiting from certain aspects like online shopping or access to free helps we did not have before.

Many people with developmental disabilities won't fully understand the new rules of society. They don't understand why they can't keep their routine or see their usual friends or supports the same way. I feel for those whom may get fined for not social distancing whom can seem "normal" but don't quite understand the meaning of social distancing. These two articles speak upon the disparity that can happen: Independence versus Dependence by Musings of an Aspie CLICK and Decoding the High Functioning label by Musings of An Aspie CLICK. 

The sheer level of ignorance, even in normal "IEP" or specialized educational expectations for those whom are Neurodiverse shows our society's unreasonable expectations. I am worried about parents enforcing these on children in isolation. As this article  ( https://musingsofanaspie.com/2014/11/13/unreasonable-goals/ ) states, I, as a 30 plus adult, can not even meet some elementary school programs expectations. As the author comments, I am not against special programming, or aid, but these need to also be coming from reasonable expectations and with guides from those whose brains actually work differently.

What does this have to do with isolation and covid 19 times?

A lot of disabled adults and children ( autism, down syndrome, learning disabled, differently wired, IQ differences, dyspraxics, handicapped, and multiple others whom are different yet not less) are still being expected to live under unreasonable goals. 'Unreasonable' will be different for each person in terms of needs and require contextual support. An example of this would be of a mother who has a special needs child whom pushes them to accomplish the same as their other children and when it happens they state, "The doctors said it will never happen but look what it she/he  did!" As the child is pictured clearly melting down in the background. Or showing a confused look of pride because they did something that made mommy happy but that they would never choose on their own to do...and their emotions are not considered. The mother pushed, the child performed even if it is a great accomplishment they were not supposed to perform, but inside they feel turmoil that can not be expressed. The injustice they can't give words to. That maybe they did not want to do that, just because they could. Maybe it was not important for them to prove it?

I understand how it is important to push at times, in order to help a child or adult become their best...but then we get into the question, "What is best?" What if your version of physical fitness or learning the list of vocabulary perfectly, or reading at that level, are not in the best interests of the child? What if they do not want to climb that hill? Does that mean they are less motivated or less accomplished? What if they prefer to sit and watch or read? Does that mean that they have less of a life? What if they prefer to run around instead of read? It is important they can learn enough to support their best life and what they can do for basic living, but what then, if they do not want to engage on that level? In this article ,Autistic Soul (CLICK) writes, "Part of my job as the parent of an autistic child is to make his reality as tolerable as possible, and this means showing him how to adapt by working with his sensory issues – like going to the shops when it’s quiet and wearing headphones to block out excess noise. Parents will find that children spend less time in their fantasy worlds when their needs are being met, and this includes their educational needs, but they must be aware that fantasy/escapism may always be an integral part of their child’s life, no matter how old they are. "

That is where covid comes in...these children and adults are still in their homes, abiding by the rules, either by enforcement or coercion or understanding, but they are still differently wired people. They still require different rules within the home, differing perspectives and understanding.  I was shocked that the schools are giving home work worth six hours a day!This would be unreasonable for any home schooler with a few special exceptions. It's not needed yet the schools are asking it. I understand there is a concern children need something to do- but there are MANY ways to have a rich life at home. 

Cynthia deals with an aspect of this on a post on sensory sensitivities in changing seasons: https://musingsofanaspie.com/2014/10/23/changing-seasons-and-sensory-sensitivities/ . This can also be applied to the changing season of Covid and some anxiety, behavioural changes and sensory preferences that could happen to any Neurodiverse child ( again this does not apply to just autism but a lot of diverse people groups.)

Also, just like there is a spoon theory for those with chronic illness, it also applies to those with disabilities: https://musingsofanaspie.com/2014/10/15/conserving-spoons/  I think many "ordinary" people may actually feel that they are not normally abled during this time. It's not the same as being disabled in day to day life, but some may feel some of the same restrictions that disabled people feel daily. This is when the "normal majority" may be able, in some small ways, to understand those of minority to a degree. They are walking in the shoes where culture collides with normal living.

Cynthia wrote HERE about liminal spaces like the current Covid situation; "It’s okay to feel certain and uncertain, often at the same time. Feeling one doesn’t make the other untrue.It’s okay to doubt myself, to feel insecure and crazy at times. Like the anger, fear, sadness and frustration, I can feel those things, move on when I’m ready, come back to them when I have to. It’s okay to not have an answer. There are more unknowns in the universe than there are knowns. See also: the unknown unknown. It’s okay to change. 2500 years ago Heraclitus said, “You could not step twice into the same river” and there’s a reason people still quote him. We are constantly changing, like it or not, accept it or not, realize it or not. It’s okay to ask for validation and it’s also okay if not everyone I share my experience with offers validation. Ultimately, I have to punch my own ticket.

It’s okay to feel like I’m the only one who knows my experience and, at the same time, it’s okay to identify with the experiences of others, even if I don’t share their diagnosis yet or never will. Adapt what is useful applies to more than just kung fu." 

If a "normal" parent needs to tell themselves these facts during this liminal time of Coronovirus, how much more does a child need to hear and FEEL this allowance from their parents? How much more does a neurodiverse adult need to make allowances for themselves or have their families give more understanding?

Where do I get authority to write about this? I am a wounded healer. My so called faults are also my virtues. In native traditions, the wounded healers were those who had been through something and survived, and then in turn brought understanding and solace to others. They have faced the challenges where the wind blows the hardest and yet their roots run deep. Their strength is in the difficulties they have learned ways around or acceptance in living those differences out. I have been deeply wounded by experiences. I have also healed some of these wounds. It is a journey. I am autistic. I am not ashamed of who I am but have had to face shame before and will again. I have multiple disabilities but I also have multiple abilities. I see the world differently. My children also have differing brain wiring, abilities and disabilities.

I read this post https://www.learnfromautistics.com/autism-interview-121-autistic-soul-on-late-diagnosis-fantasy-and-autistic-identity/ and for a moment I wondered if I accidentally wrote it in my sleep! I could have almost written it word for word. Which tells me that my experiences are not just mine alone. Some may be particular to me, but the larger lessons I have slowly learned, can perhaps help others? The numerous articles I have consumed and made part of me, can now be helpful to those who do not search for such things, but need the alternative perspectives to understand the differently abled around them. If you have such people in your life, please read or mark the short articles for later that I have referenced here. They may just help you during this time too.

*If possible get together with a few safe friends whom are healthy. Just wash. Human connection in person is healthy for your child too.

Song Choice: Life- Our Lady Peace "Oh life is waiting for you. It's all messed up but we're alive."

Advocating for Local Anesthetic Wisdom Teeth removal. Autism At The Dentist.

*DISCLAIMER: I am not a Dentist or medical doctor. These are my stories and opinions not to be used without a professional opinion on your specific situation. The following linked article below was the most balanced for giving information on wisdom teeth procedure options, medications, tools involved and aftercare. https://askthedentist.com/wisdom-teeth-removal/ Also it covers why it is best to choose LOCAL Anesthetic if possible. After I read this article I also phoned in about what tool they were using to avoid an air embolism. I would have cancelled and rescheduled if they did not have the appropriate tool. It's tough to do sometimes but it is better to be difficult but advocate for what is best in the end.*

(Pictured; her area set up and a paper of all research summed up on do's and don'ts for myself to remember upon arrival home.)

In December the Dentist asserted, "Your daughter's two lower wisdom teeth are close to nerve paths and the surface. She needs to have surgery within four months to avoid more damage. I will send her away to a specialist."

To which I replied, "Our family has a fraught history with general anesthetic plus the risks compared to local are immense, recovery takes longer and if it's possible I would prefer to do the surgery without her going under. What are our options?"

The dentist looked shocked, "Well, most people wish to be under and most dentists prefer to perform under general because it's easier not to deal with the patient."

I am known to be a bit of a pain in medical/ health situations. I found the one Dentist in our area who would take on my daughter with normal freezing without any other drugs involved. Including the "forgetting drug" which we have also had a history with. My daughter had it when she was five for a procedure and still recalls the worst parts yet her memory can not fill in the gaps, so she had nightmares for years. The same thing happened to me in one of my procedures. Taking that drug depends on what situation it is is used for but both of us would rather remember the dental work instead of have our brains hooked on what is missing. 

Two months later we walked into our normal dental office, she was frozen and three hours later she was back home. They had to freeze both sides separately which took longer, but at the time it felt fairly quick. Both my husband and I accompanied her. They wanted us out of the room as soon as the freezing kicked in but I refused for both of us to leave. My daughter was already losing it and tears began running down her cheeks. The hygienist was firm on both of us leaving, but then the Dentist arrived. "What's wrong sweetie?"

"I want my parents to stay." She answered.

To which I inserted, "I understand it is crowded in here. If you are worried about either of us passing out or causing trouble that is not going to happen. How about I go wait in the waiting room but my husband stays? I think you will have an easier time with her overall if you allow one of us here." 

In my mind I knew that my husband had already established a charming relationship with this Dentist. I was fully aware she liked him over me. I also knew that men are more accepted in high intensity situations- unfortunately. Even though I was more equipped to deal with it, I felt it was worth the sacrifice. It was funny though because the hygienist had to come out four times to ask me questions because my husband did not know allergies, previous information ect. However, he did amazing at being with our daughter and that is what mattered in the end. I honestly felt more out of control waiting out when I am used to being in with my children for everything but it all worked out. It was nice to skip the bloody bits I suppose.

Before the procedure my daughter did have the beginnings of a meltdown. We had prepared her for the situation. We had equipped her with all the information on why it had to be done, what the risks were for the procedure and what the risks would be if she was put under with general anaesthetic. We warned that it would not be pleasant but she would not feel pain, only discomfort. She chose to also avoid general.

She was quite brave but at the point of her meltdown I did have to step in. I save my "harsh mommy" for dire situations. My children know when I talk in a colder detached tone that I mean business. She was beginning to panic and my response was, "Nope. You are not going to cry right now. I can promise you that you can cry as much as you want in a few days but getting stuffy when you have dental work is not going to help you. I promise we are doing what is in your best interests. If we could choose  not to do this- we would. If I could have found ways around this you KNOW I would have. You know how I work. As it is, this is the best case scenario risk wise and recovery wise. I trust this dentist. I trust you. You can trust daddy and I. If you cry and melt down now they may refuse to work on you. I need you to be brave. We do not want you to get half way through and they ask for you to go under in the emergency department. Sometimes we have to do tough things. We have no choice but to get through. You know you can have years of consequences in terms of behaviour, gut health and side effects with General Anesthetic and all that goes with it. Especially being on the Autism spectrum. You are going to do this. I have faith in your strength. We will pamper you and take care of you after. Breathe. Concentrate on a favourite place like the beach and build it up in your mind. Listen to your music and you can tell them if you feel any pain. They also want you to be as comfortable as possible."

As I was saying all of this she began regulating her breathing. Each time I saw her begin to quiver I would say "Absolutely not" again. Did I want to cry too? Absolutely. Did I wish I could allow her to express her full range of emotion? Of course. But I knew a stuffy sinus cavity would make all things worse. They also gave her the option to opt out of the second one if it was too much. I turned to her and said, "Honestly, you would have to do recovery all over again if you don't do the second one now. If you absolutely feel you CAN NOT go on I will respect that but if you can make it through two I need you to make it through two. I understand what I am asking is not easy but the other option is tougher. I know what it is like as I have had a 5 1/2 hour root canal due to many issues going wrong but when I was given the option to stop I realized there would be more complications and have to re start another day so I did it. If you truly can't- you can opt out. But I need you to try even if it sucks." To which she nodded and did, even though she did not want to.

Did I freak out inside when I signed the waiver of all that could go wrong? Yes. My husband knew from my raised eyebrow that I was freaking out inside but she had no idea. Afterwards the Dentist said, "She did better than many adults. We were so impressed. She really has control over herself. Thanks to her attitude and relaxing techniques we were able to proceed much quicker than usual once the freezing set in."

We were so grateful for the Dentists abilities, confidence, and talent. I brought Valentines chocolates to reward the Dentist too as I knew that it would have been easier for her for our child to be drugged. Luckily, she was from Eastern Europe where the mentality on pain, sheltering children and necessary protocol is slightly different. She was brisk and to the point but these attributes worked in our favour for this procedure.

Both the Hygienist and the Dentist wanted to prescribe Toradol (click) for pain. Again I refused. I understand there is a time and place for different treatments, pain killers ect. I have been on Toradol. I know the side effects and how it works. I will not risk a stroke for medium pain. I am well versed on most meds due to my fraught history under aged 25 with the medical system. At that time I took anything and did anything I was asked. Skip forward ten years of therapy later, armed with information, experience, natural methods and knowing my own body and this time I asked for another option. I'm used to being the pain in the ass. I try to be kind about it and very grateful when professionals work with me. 

They prescribed T3's. When I went to the Pharmacist, he told me to start her on extra strength Tylenol instead and work up to T3's only if needed. At the Dentist I was told the opposite. I chose to trust my Pharmacist when it comes to medications and the Dentist when it came to aftercare. I bought the T3's in case but we never used them. ( Read this article for why I chose this method.)

Let me be clear. If my daughter was in immense pain I would have had no issues giving her stronger pain meds. I also gave her the choice. I explained the difference between T3s and Tylenol. The side effects and my experiences of massive stomach issues and hallucinations. I told her she may not experience any of that. Or that if she does she may prefer it over pain and that it had to be her choice. She asked to have the T3's available but tried extra strength Tylenol first. She did not want to risk more nauseous on top of what she was already feeling. 

Aftercare included one of us being with her for the first 24 hours constantly. We put on an icepack tied with a scarf every 15 minutes religiously until bedtime and then immediately upon waking. She lived off of broth for 48 hours then worked up to smooth yogurt and hummus. She had regular Tylenol for the first 30 hours but then she asked to only have it at bed time. I also lightly applied aloe vera mixed with vitamin C and moisturizer on her jawline and mouth twice a day to promote healing and combat dryness.

I had read about "Dry Socket." Perhaps I was overly protective but I would not let her do anything except be elevated on the couch or go to the bathroom. She was not allowed to have her head below her heart for three days. The literature on rinsing with salt water is mixed but I chose to go with the cautionary tales of not allowing her to swish and rinse until the 6th day. Instead, since she was on broth and yogurt for three days she was allowed to gently brush her front teeth on the evening of the second day. I would not allow her to swish and she had to let the water dribble out. We also put barely any toothpaste so she could swallow it if she needed to. (Again, read THIS article for everything you need to know about NOT using straws, sucking on popsicles or swishing for at least three days.)

https://www.animated-teeth.com/tooth_extractions/a-tooth-extraction-healing-times.htm#initial.healing

We are on the fourth day. Yesterday my daughter said to me, "Mom for the first few days I just wanted to cry but I remembered what you said about being stuffy. I felt a bit sorry for myself but now that I can talk and tell my story, I realize that it was as traumatizing as I originally thought but I did it and it wasn't worse. In fact, I am quite proud of myself. I can't believe I did that. I now realize I can do other things in life. Maybe it helped me understand recovery for if I have babies a little bit better although I know that is different. Also, now I know what to do with my kids. At first I was mad at you but I think sometimes you make me a bit mad on purpose so I am not sad."

I laughed, "Yes, my sweet, smart girl. Inside I sometimes feel like I am breaking but I need to do what is best for you. I'd rather take your anger then see you lose it and miss an opportunity for easier healing."

Honestly? I did almost break down myself later when she was ok. My husband had to hold me as I was so proud of her that I felt overwhelm. Years of therapy for both her and I paid off in that moment. To which my thankfulness was tenfold. I am DREADING my boys turn as I know it would be worse with four teeth out (my daughter didn't need the other two out.) I had horrid experiences with my surgery. It took me six weeks to recover. I bled internally, reacted to the meds, and it took 8 days for the general Anesthetic to clear my system and stop affecting me. Unusual responses are my typical. The running theory is due to autoimmune disease and leaky Autistic gut but it was terrible. My nose bled constantly and I bruised so badly it was two months before my jawline looked normal. Which is why I did everything in my power to make sure my daughter's experience was the best it could be.

Notes on Autism and The Dentist:

* In general Autistics spend more time at the Dentist. They also have unusual reactions or  Atypical. For instance, I take triple the time to actually freeze but once frozen, it takes me triple as long to clear the freezing from my system. Thus the Dentist has begun to use 1/4 of the amount for freezing and asks me to come in half an hour earlier to begin the process. He says I have extra nerve paths and crossed wires. He has to freeze at different points to get the paths he wants which is baffling to him but we've worked out a system after years of treatment.

*My Autistic son had dental work done 22 times in a period of 16 months when he was age 4/5. This gave us both a lot of experience. He did meltdown 2 out of the 22 times. However, the Dentist, Hygienist and myself were a great team. It is important to get a team who either understand Autism or are willing to be educated on it. 

*Being firm, kind and communicative are crucial. Autistics often understand higher amounts of medical information. But they get confused when it comes to reactions, interactions with other people and emotions. I trust my children with higher amounts of explanations. Even at aged 4, I would tell them WHY they had to do something. I read them articles even if it went over their head. I assumed competence. However, I also made sure that there were strategies in place to catch them in moments they needed support. I understood that with capability there are also disabilities. I knew this from my own experiences. 

*Rewards are important. Not as bribes (although sometimes necessary) but as true gratitude for their bravery. I told my children not to expect anything but if they did their best I would try to buy them something appropriate for the situation. Verbal words of affirmation were always piled on them afterwards. I would re iterate how brave they were, how kind they were to their caregivers, how amazing they did with the situation and how lucky they were to have health care and a team that cares about them. In tougher instances I made sure they knew of the reward beforehand and talked about it during the tougher parts (My youngest has had several tooth extractions. He has only had one of his baby teeth out on it's own. His teeth just don't fall out. It's a smaller version of a wisdom tooth removal. It is easier but they do put a chemical in to loosen the tooth before really pulling to get it out.)

*I also made sure my children were part of giving their caregiving team gifts later. They would help pick out the plant or card for the Dentist or Hygienist. I wanted them to reframe some of their experiences in the lens of gratitude. To see a different perspective that someone who may have caused slight distress in a medical situation was also fixing something for them. It's a tricky lesson because I did not want my children to celebrate pain or get confused about what pain means. On the flip side I wanted them to learn resilience and that they could do hard things.

*Sensory issues are 3/4 of the problem in medical situations for Autistic people. When my children were little I made sure they had a stuffy (and the Dentists usually gave them one until they were older and could pick tiny treats instead) to hold. They also had comfortable PJS or clothes they picked. I wanted as much in their control as could be. They were allowed to pick the movie on TV or if it was already on I brought music as an alternative if they did not like it. I made sure to put firm pressure on their legs to let them know I was with them the entire time. If I felt them squirm or begin to lose regulation control I would talk in a soothing sing song voice. The Hygienist also followed suite. I also found explaining every single facet of the situation made it better. In my daughter it was the opposite so my strategy was to distract her with silly stories or imaginative games. 

*Different Autistics need different sensory solutions. Find what works for your children. I brought their own sunglasses to wear when they were little. My daughter found that a heavy book on her legs during wisdom teeth surgery reminded her that she was grounded and not in some weird head space. I brought a large hardcover volume just in case and she said it made such a difference for her. Some children wear weighted vests ect. For myself, I ask the hygienist to keep me dry. I can not stand drool on my face, so they constantly are wiping me and applying lip gloss during procedures. I also ask them to regularly use the suction in my mouth as I also hate swallowing during a procedure. 

*If you have close friends or family inform them of what is happening. I would not allow visitors the first 48 hours but I updated with pics. My daughter benefited from flowers, gifts and money due to people being kept up with her story and wishing to make things better for her. It sometimes is beneficial to have the community involved ( the ones who know the children at the deepest heart level) to show their appreciation of the bravery a child has conquered in a tough situation.

What are your tips at the Dentist?

https://www.animated-teeth.com/tooth_extractions/drugs-to-avoid-before-extraction.htm

https://www.animated-teeth.com/tooth_extractions/a-tooth-extraction-healing-times.htm#initial.healing

Post Note: We were also particularly proud because this all happened shortly after she was officially diagnosed with my same condition of Polycystic Ovarian Syndrome ( PCOS.) They do not like to diagnose teens but I insisted she be checked. When her Testosterone came back high they said it could be a lab mistake and wanted to re test. I made sure it was on the 19th day of her bleed again (even though some doctors say it does not matter.) It came back almost TRIPLE for what a child her age should have for Testosterone which explains a lot. It took all my prowess to get us out of that Drs. appointment without agreeing to birth control ( to which I have loads of research about and against. In some circumstances it is appropriate and it does have a band aid affect for a few years but later on this is akin to putting a band aid on a deep organ wound.) As it was I had to take a prescription just in case to get out of there. We are seeing my naturopath for her this month as I am on a natural Androgen blocker that is slowly making a difference. PCOS explains a lot. It's nice to finally have the answers I have pushing for since puberty began with a 55 pound weight gain. She was tiny (to the point I could carry her on my hip still at nine) and she rapidly gained and she got her period at eleven and it spiralled from there. PCOS is often most genetically given from the third generation's exposure to chemicals (even small amounts of Bleach, Mr. Clean, PBA, Foods ect) and drugs ect. My grandmother was on strong steroids for Colitis and her bowel removed which affected me. My mother did not know much about the cleaners she used ect. I do not blame the previous generations for the times they lived in or the lack of awareness in choices. At first it was devastating to me that many of my life choices (that came with some sacrifice) would not fully affect my daughter and give her benefits but I have hope for the next generation that maybe they will suffer a little less and each one will get better if they make informed choices. I highly recommend the book below for anyone wondering about this condition.

Song Choice: The Next Right Thing (She chose this song for obvious reasons.)

AUTISM INTERVIEW #97 PART 2: KMARIE ON ADVOCACY AND DEVELOPING A POSITIVE AUTISTIC IDENTITY

AUTISM INTERVIEW #97 PART 2: KMARIE ON ADVOCACY AND DEVELOPING A POSITIVE AUTISTIC IDENTITY

This was originally posted here: https://learnfromautistics.com/autism-interview-97-part-2-kmarie-on-advocacy-and-developing-a-positive-autistic-identity/ I want to thank Jenna for asking me to partake in this series. She helped give me back my voice in a way...This was a fun endeavour. Jenna was excellent at letting me add things after the interview, giving interesting questions, and editing my posts for me. I would highly recommend the experience to an Autistics/ Aspies out there! Her blog is an excellent resource.
June 11, 2019

Interviewsadvocacy, autistic identity, Kmarie, parenting

This is the second part in a two-part interview with Kmarie. Kmarie is an autistic wife, mother, and blogger from Canada. Her beautifully written blog details a variety of different life experiences, including (but not limited to) living with Asperger’s, INFJ personality, low ferritin, and chronic illness. Last week Kmarie discussed her relationship with music, the importance of self knowledge, and her struggles with executive functioning and language. This week Kmarie shared advocacy advice for parents who are trying to raise children with positive autistic identities.

What mistakes do you see neurotypical autism advocates make?

Not listening to actual autistics. Yes, we are diverse. Some of us believe in the social model of disability while others the medical model…I am the in-between group that leans more to the SMD but believe in the validity of both to a degree….but our divergence on topics should not stop people from listening to us and gleaning information on how to parent or care give to those with autism. 

I recently read a Psychology Today article that had me enraged me with insinuation that we needed to be eradicated. I have to stay away from the politics of it all because I become locked into more language difficulties when I am upset. But the biggest mistake I see is supporting places that give more voice to the eradication of autism or not listening to those who actually HAVE autism. 

Another mistake is getting bogged down by politics and identity language. I know it is an important part, and for some autistics, it is especially crucial for their healing, but overall, I feel this should be later on the list of importances, and first and foremost, it should be about support. Support, understanding differences, and validating before improving. Most of all, they need to know they are loved for whom they are, not for what they could be. Their souls deserve to know that being accepted is part of their parents’ choice.

What have been the most important factors in helping you develop a positive autistic identity?

I can remember years ago, reading “Aspergirls” by Rudy Simone. That forever changed my life. Her approach was so laid back but relatable. I find my certain concoction of whom I am is helped more within my favourite fantasy books in the YA 9-12 section. Percy Jackson books also helped me see the hero within my learning disabilities. I suppose I am easily positive. Cynthia Kim from ‘Musings of An Aspie’ became a friend, and she wrote “Nerdy, Shy and Socially Inappropriate” which changed my life too. Sam from Everyday Aspergers is also a friend and was a HUGE part of my positive Autistic journey. Finding them was one of the best things that ever happened to me. Before then I was reading mostly “professional” literature…Tony Attwood etc…,but they linked me up with other people on the Spectrum.

Also, seeing autism manifested differently in my children, and their beautiful, insightful souls has also been a huge part of my positive autistic journey. I also need to stay away from autistic blogs that focus on language, identity politics, and hard hitting issues. Not because they are bad…they are needed too and I cheer them on in the background for the most part…but because I start to lose focus of the good things. I also have memory issues and speech problems of my own and have been corrected by others on how I refer to myself. I don’t appreciate that aspect. I try my best, and it will fluctuate. As I am easily positive, I can also easily derail. It is why I stay away from the news. It’s not because I am choosing to be ignorant. I make sure I educate myself in varied ways, and stretch my mind…but it is because I am heavily empathic and easily take on someone else’s anger (Even if it justified and right…It’s not mine…) Being an extreme introvert, I am a hermit on many levels, and I have to protect my space in order to keep my innocence and positivity. Honouring my boundaries and need for space, kindness and tolerance in that regard has helped me have a more positive identity.

What advice do you have for parents trying to raise their children with positive autistic identities?

Respect the sensory. I know many parents cannot take their children out of school, but if there is ANY way that is possible, it is amazing what the home environment can do…if it’s a healthy one. And if not, make the school day shorter, find sensory safe spaces often, make the home magical and healthy to come home to. I was astounded the second year my children were home at the differences in whom they became. Their communication was clearer, they were more confident, they became happy within themselves, less sick, less anxious, less depressed…and all of this was because their sensory was under their control. We decorated their rooms the way that suited their personalities, and we made sure to include sensory items. I wrote a post about creating safe havens that has been helpful for some.

I have written also written posts about Sensory Overload that many parents of Autistic children have found especially helpful. My post about Sensory Overload at Christmas expresses how being Autistic still affects even favourite Holidays that I enjoy thoroughly. I explain Sensory Sickness with the example of one Halloween in our family along with tips and tricks to see the signs of “sensory sickness” early, which is a step up from Sensory Overload. In THIS post, I break down effects that are a part of sensory overload in general Holidays. For example; Odours, Relationships, Outfits, Anxiety, Food Intolerances etc. and I give examples of what that looks like in our family and solutions to some of these issues.  Finally, I wrote about our family’s experience at the zoo, which was a little piece of torture on earth, especially at the time when the children were younger (I still loathe the zoo). Many Autistic children do not have the words or emotions to clarify what is happening in these scenarios. If I am being honest, I didn’t either until I wrote these posts (many of which were written a few years ago, but still apply for any parent who is looking for guidance in these areas). There is also the other rare time of sensory deprivation which I wrote about HERE, although for some Autistics that is more the norm of their sensory experience. For myself, Sensory Deprivation, or what I call my “robot mode,” is rare. 

Another aspect of helping children with autism manage the sensory is diet. However, I do not believe the claims that diets “cure autism.” Often what is happening when people claim their children were “cured from autism” from a dairy-free, gluten-free, sugar-free diet is that they are simply managing the sensory better. We have been on that diet for 5 years now, and what is actually happening is that it takes down a lot of the sensory within (from the gut)…which enables clearer communication at some points and more comfortability. But we are still the same people. We still have our unique way of looking at the world. It’s just that our guts are in less pain and permeability so our nerve pathways are open to us handling a bit more out in the world. What works for one child, may not work for another. But in general, find the sensory that is overwhelming or underwhelming your child and try to remove a lot of it or work around it because then they will have more room to express themselves instead of just trying to cope. Also, if they can’t choke down a food, it is easy to find an alternative or creative way around it. Food is important though in terms of helping them be under less sensory distress. Basic respect is often forgotten and autonomy is not given to children…and children deserve to be part of their own care and to be able to have a say in it. 

Next I would say, read to them beautiful, positive articles from actual autistics. My daughter is reading Aspergirls right now, and she can’t relate to the parts I did, but the parts she can make her light up with happiness. My son loves to hear Musings of an Aspie articles…especially ones that focus on Executive Functioning and understanding how his brain works. We celebrate our autistic identities. I let my children refer to themselves however they want to be referred to. “Aspie” is akin to “dearest” in our home. (Our son was diagnosed at age 4 when Asperger’s syndrome was still in the DSM5. We still use the term even if it has gone out of use in the professional world or not liked by others. In our house, it’s a term of endearment.) I feel it is important, like personality typing, to learn the struggles and benefits of BEING in the world. Being Autistic also fits into that.

 Also, when the children are in a meltdown, give them safety, love, and care. I’ave written about how to deal with meltdowns by other Autistics and included links to similar resources HERE. Know that they are not acting out of spite, but out of pain. Read up on other autistic thoughts on meltdowns. Give them code words for when the world is getting too much or when you are out of the house, and they need to keep their dignity, but leave a situation. 

I also feel that Autism often comes with co-conditions. It is important for caregivers and Autistics themselves to understand the co-conditions too. For example, I have Dyspraxia. Often, most of my frustrations and issues people pick up on are actually Dyspraxic attributes and NOT Autistic. There are many “cousins” of Autism that overlap, and it is important to research all that apply to the child. Autism sometimes will not address the struggles the child may encounter, nor the great differences that require celebration! 

My youngest has multiple learning disabilities and slow processing speed, but he is NOT Autistic. However, my older two are Autistic, and they can accomplish aspects of life which he can not, but he also can work around issues they cannot. My daughter has the co-condition of OCD Anxiety, and my eldest son has Dyslexia along with Autism.

Sometimes, parents mistake seizures for an Autistic trait when it is separate. Physical issues can go along with Autism, but many physical impairments are co-conditions. While it is true that it feels like our family lives at the Dentist, and we DO have weird, odd physical ailments and react to medications differently due to our different brain wiring, some of that can be attributed to the MTHFR gene that can also go along with Autism. Autism is different for each child, and it is important to remember that, as a famous quote says, “If you have met one Autistic child, then you have met ONE Autistic child.” Some will be sensory seeking while other children will try to avoid most sensory. Figure out your child’s preferences and read from other autistics about how to respect their journey!

Also remember that Autistics are not often age conscious. My children generally prefer to play with younger children or discuss with older adults. They often prefer to sit in with the adults, and that is perfectly ok.

To sum up, I would say to concentrate on education from other autistics, support their differences, and celebrate ALL that they are…the struggles, the gifts, and the ordinary…so they know they are worthy of being loved. I was very excited to explore your site as I think you are doing an excellent job of organizing a space for this. It encourages me and gives me hope for the future of my children.

KMarie often selects song lyrics at the end of her posts. Below are her choices for this interview:

You Have More Friends Than You Know – Glee

I hope each Autistic child and adult know that who they are is ok!

“Be brave. Be strong. You are loved. YOU BELONG. Some day soon, you will see, you’re exactly who you’re supposed to be. And you don’t have to go through this on your own. You’re NOT alone. You have more friends than you know. Some who surround you. Some you are destined to meet. You have more love in your life. Don’t let go. Give it time. Take it slow. Those who love you the most may need more time to grow. It’s going to be ok. You have more friends than you know.”- Glee 

“Be who you are. Learn to forgive. It’s not about who you love but how you live.”– Glee

The Wizard and I – Wicked. 

All the songs from Wicked hit my soul during my diagnosis, but these lyrics had me weeping From the Wizard and I “Did that really just happen? Have I actually understood?

"This weird quirk I try to suppress or hide- Is a talent that could help me meet the Wizard? If I make good, so I’ll make good. When I meet the Wizard, Once I prove my worth. And then I meet the Wizard
What I’ve waited for since: since birth! And with all his Wizard wisdom. By my looks, he won’t be blinded. Do you think the Wizard is dumb? Or, like Munchkins, so small-minded? No!
He’ll say to me, “I see who you truly are – A girl on whom I can rely!” And that’s how we’ll begin
The Wizard and I. Once I’m with the Wizard. My whole life will change ‘Cause once you’re with the Wizard. No one thinks you’re strange! No father is not proud of you. No sister acts ashamed. And all of Oz has to love you. When by the Wizard you’re acclaimed. And this gift – or this curse
I have inside. Maybe at last, I’ll know why. When we are hand in hand. The Wizard and I!” 

Often Autistics go through life trying to suppress quirks or feel like (at times) we have been cursed because we are so different, but to be celebrated? That is always a beautiful shock to us! When we are filled with hope that someone likes us FOR our differences – that’s amazing.

AUTISM INTERVIEW #97 PART 1: KMARIE ON THE BENEFITS OF KNOWING YOURSELF June 4, 2019Interviewsautistic identity, identity, Kmarie, music This is the first part in a two-part interview with Kmarie @ learnfromautistics.com

I participated in a two part interview at https://learnfromautistics.com/blog/ Please check out Jenna's site as it is an excellent resource! I LOVED the interview process with her, she also edited all my words, which took the pressure off my executive functioning issues! Thanks Jenna for all the hard work you do on behalf of Autistic people and for asking me to participate.

AutIstic INTERVIEW #97 PART 1: KMARIE ON THE BENEFITS OF KNOWING YOURSELF

June 4, 2019Interviewsautistic identity, identity, Kmarie, music

This is the first part in a two-part interview with Kmarie. Kmarie is an autistic wife, mother, and blogger from Canada. She is is drawn to music and often uses song lyrics to express her emotions. Her beautifully written blog details a variety of different life experiences, including (but not limited to) living with Asperger’s, INFJ personality, low ferritin, and chronic illness. This week Kmarie discussed her relationship with music, the importance of self knowledge, and her struggles with executive functioning and language.

On your About Page, you write, “I believe when we know ourselves first, we make the world a better place.” Can you expand on this?

Baruch Spinoza (one of my favourite Philosophers) wrote, “The more clearly you understand yourself and your emotions the more you become a lover of what is.” If we can not understand why we choose different ethics, emotions or responses, then it is tougher for us to understand people who are different from us. I feel, when we love what IS our life- whom we ARE, we are able to activate change because our foundation, grounded in a sense of secure self to a degree, is built. When we know our motivations and why, I think that it is easier to be compassionate about the way others are. Thus making the world a better place. When we are at peace with our own understanding of where we stand, how we are, and whom we wish to become, we add that strong, solid stance to the human collective. Perhaps it’s a bit of a Stoic mentality, but when our self is in check, understood, and balanced, we are less prone to violent rage, ignorance, and trampling of other’s basic human rights.

How do we go about “knowing” ourselves? How have you learned more about yourself? In what ways do you continue learning?

Wow, this is a big question that will have a big answer and I will still feel I am leaving things out…Feel free to skim.

There are many mediums to learn about self. Cognitive therapy, conversation, film, art, music, reading…but specifically, I feel that in-depth knowing of self can often jump off in Personality Typing. The issue with Typology is that often people answer questions with how they wish they were or how they mistakenly perceive themselves and thus get the wrong result. A wrong result is worse than no result. I often tell people they will know it is right when they read their overview and think, “How did this person crawl into my mind?” MBTI tests like Personality Hacker or 16Personalities are excellent starters. I am an INFJ. In the past, I mis-tested as an INFP, which, after reading the description, I realized I am most definitely not. INFJ described my life. The Enneagram  is another layer of self, but again, the testing is tricky. I am a 4 with a 5 wing.

There is a certain sense of “Becoming” or “Knowing” when I read a book or a test result that resonates in frequency with my soul. When I found out I had Autism/ Aspergers…that was another piece of ME. But honestly, knowing yourself DOES come with some struggles. Each time I find a new aspect of myself that resonates as true, I go through a mini identity crisis of  “Oh wow I am like that? That is something I now need to work at embracing or growing in my life.” 

At first, it can be hard work…learning about personal strengths and weaknesses. Sometimes even if it feels true, it may not be wished to be true…and it requires some soul growth. I cried about my Enneagram Fourwhen I read Beatrice Chestnut ‘s book, but then I read the “Sacred Enneagram,” and even though some of my core beliefs may sightly differ, that book put my four back into some perspective… and then I found a blog by an actual Enneagram 4 that dispelled the multiple myths from writers trying to understand but not actually Fours themselves. That cleared everything up for me. I still enjoy Beatrice Chestnut’s ideas, but I take them with a self aware grain of salt. Now I am proud to be a four. But that is because I had that guidance from another actual Four type. 

It is the same concept with a “professional” versus an “actual Autistic” voice. Both have value, but choose the actual Autistic voice first and foremost. It’s why it is so important that we tell our stories…even if we think they don’t matter or no one is listening. When we tell our stories, it enables others to tell theirs. But after the hard work of an initial new knowing of self, a new layer of understanding is born, and that is often when life tends to get better. Or at least, I become better within the normalities of every day living…

Oh, I am a self growth junkie. I kind of “life coach” people in my spare time so I am constantly on the lookout for new paths of knowing and learning. Currently I am reading “The Goddesses in Every Woman” and “God’s in Everyman” based on Jung Typology rooted in Greek Archetype Myths. I was blown away when I found out I was an Aphrodite and wrote a post on that. My pre-judgments going into that were challenged. I often feed my learning through regular reading of Philosophy, Psychology, Educational, and Sociology themed books. Right now I am reading, “Life through the Lens of Unschooling” by Pam Laricchia and finding myself in many of the pages. I also just finished an Alan Watts book. We are conducting a book study in our home. We also host “Called to Question Gatherings” to which we invite people who are passionate about topics to educate listeners and discuss in an openly peaceful forum of differing beliefs. We have had a lot of professors, educators, and laymen speak about topics that interest them. I firmly believe we learn more from people who are excited about their own stories.

I am constantly on the lookout for viewpoints opposite of my own to challenge any stagnant thinking I have. For instance, I heard about Jordan Peterson and his controversial book. Initially I was very against him, but after watching numerous You Tube videos of his discussions, I finally began to understand his story and where he was coming from. I read his book…I was annoyed at some parts, and disagreed with some, but I also came away with a belief that for SOME people- his book will make them better people…and for THAT specific audience- his voice matters too. Even if it is not something I would fully support, I at least respected the way he holds himself in an argument. If I feel I am becoming too conservative, I read more liberal people…and if I feel I am becoming too liberal (which is more my natural tendency), I re balance by reading a respected conservative. I always try to make sure my sources at least share a value of trying to make the world a better place or some sort of ethical platform. While I am a rebel in my own way, I am also a rule follower, so I try to find people who have that balance. I try to have a ratio of books that would be in agreement with whom I am, but also that require me to do outside the box thinking. As Baruch Spinoza writes, “No matter how thinly you slice it, there will always be two sides.”

You recently wrote a blog post about increasing executive functioning and language difficulties you experience. How does this impact your relationship/interactions with your husband and children? Are there ways they can support you during these times?

It has been hard. It is taking me longer to process. Normally I am a rapid processor. I can read a book easily in a sitting, but it’s been taking me a bit more time lately. Getting my thoughts out in real life, as opposed to writing on a page, has always been more challenging, but now, to my horror, it is translating to paper/typing too. I admit I have been in panic mode lately, and I am trying to use the time I do have with more accuracy to advocate for myself, with my children and husband. Plus, I want them to have the skill set to navigate deterioration or different paths of communicating when/if it happens to them. So the times I am more cognizant, I have been reading them posts of others this has happened to, I try to explain, I try to give them an understanding of the brain, nutrients, what is possible to control and what is not… But then there are the moments when I have no words and I get frustrated easily. Honestly, I am still learning to navigate this with them. Most of this year I have felt like a massive failure.

I home school my children, so I do need a certain level of communication to keep them up in their studies. Our facilitator just came and was happy with their progress, but I couldn’t shake the failure pit of despair in my gut. Deep down I know though that I am resilient and loved…and we can work with whatever life throws at us with enough hutzpah. Basically I am stubborn in believing in my worth and contributions overall because it has been a life long fight of mine.

They have naturally helped me by giving me words. Luckily, I am so in tune with my husband and children, they often know what I want without me saying much. Over a decade with chronic illness with spurts of pain so bad I cannot speak has given us practice in this situation. My daughter knows with my facial expressions generally what I want. We have an almost made-up language of gestures, expressions and grunts etc. She brilliantly figured out that often when I am in “the zone” and they try everything to get my attention and I just can’t give it, all she has to do is gently stroke her finger down my cheek or stroke my hair and immediately I pay attention. My husband never figured that out…he always tries to talk louder or suddenly sits beside me or uses shock effect, and that won’t get my attention. I may startle, but I won’t be focused. I appreciate my daughter figuring that out. I thought I hated most forms of unexpected touch, but I appreciate when she does that.

My husband luckily has the best sense of humour. He is also generally a natural care taker. So when I mess up my words, he does often laugh, but it doesn’t bother me because it is in an enjoyment way…he loves my interesting speech slurs, word and phrase mix ups, and the way I speak. But he is pained for me if it is getting in the way of my life. I now often look to him in a conversation, and he knows he is supposed to jump in to supply the words I need to make my point. He never takes over though if I am struggling through, but I wish to continue. He generally has worked out cues with me to know when I want support and when I do not.

I really struggle if I am in a flow state and get interrupted. Often my words won’t come back and I can become frustrated for the rest of the day. My family is learning not to interrupt when I am in a monologue. 

I have never been able to express some of my emotions without typing or writing…so when I am mad at my husband, he knows by the songs I play. He also tends to know my mood by the music I choose. Music is a massive form of communication in our home. Often, even though it is important to me, I forget to use it. So they all work as a team to make sure I have access to music or remind me that I haven’t listened to any in awhile. It’s like drinking water. Yesterday I became so dizzy and nauseous to the point of curling up in a ball for an hour. My youngest came in and said, “Mom I don’t think I saw you take one sip of water since you woke up.” I thought about it, and he was right! I was swiftly brought two cups of water and half an hour later, I was fine. My family views music as important as water in another way. It is communication, so accessibility to it and reminders for it are part of our day.

You often use song lyrics and music to communicate your feelings. Describe your relationship with music. Have you always been drawn to music?

Music is my life. I don’t feel I could fully function or feel fully human without music. As a little child, I would grab the microphone and sing 80’s rock and roll at the top of my lungs. 70’s and 80’s rock is still what I need if I require an energy burst of happiness. In the crucial moments of my life, the right song has come along to describe my journey. I also can’t seem to cry often unless I have a song to trigger me when I need to. I have to go to songs for those moments like Celine Dion’s “Fly.” I have a song for everything basically. Before iTunes and the Internet, I would know songs from every genre and educate my friends in all of them. I constantly made mix tapes and then burned CDs to express my friendship to people. I communicated my care, and I still send song lyrics via text to my friends. I also love introducing people to new songs. Lyrics are first and foremost my way of speaking. Even in my ordinary day to day speech, those who know many songs will hear lyrics sprinkled throughout. 

I can’t listen to classical much. I find music without lyrics really stressful. It’s fine if it’s background for a movie, but not playing on the speakers. My husband loves classical, and I will tolerate it for awhile before I put on headphones or beg him to put on ANYTHING else with lyrics. Every genre fills a need for me. I am also seasonal in my music needs. For some reason I crave country in the Spring or when I want to celebrate simplicity. I love Jazz and Easy Listening leading up to Christmas. Rock ‘n’ Roll, Broadway, Pop, Metal, Show tunes, Opera, Punk, Indie etc…it all has its place. I like everything except for Screamo and most Classical. Although I am grateful to Classical for getting us to where we are today and there are MANY beautiful pieces. I just need lyrics to ground me.  

Music is part of my soul. I would literally be lost without it. I have a soundtrack playing inside my head for every moment. It expresses a part of me I can’t seem to access otherwise. That’s why the show ‘Glee’ was and is still important to me. Most people don’t get that. I still watch later episodes of Glee when I’m on the treadmill or if I’m having a tough time or if I need to express something. Glee combined all of my interests and obsessions; film, music, movie, artists, self growth, friendship and connection. It did so in a way that was both irreverent and satirical to all subjects and paradoxically respectful and acknowledging. But first and foremost, it expressed the inner energy I have inside. In it I found my voice once again.

 When I first found out about my Asperger‘s diagnosis, I was also introduced to the Broadway musical Wicked. Broadway and film have been huge aspects of my life almost as much as music. As a child I would longingly wish to escape into the 1940’s films. Singing in the Rain, etc. When I found out I was Autistic, the role of Elphaba in Wicked really made me feel less alone. I would play ‘Defying Gravity’ in tears over and over again. My husband knows every lyric due to my continuing obsession and repetitive listening. It helped me navigate the two years I was still finding myself within my diagnosis.

KMarie often selects song lyrics at the end of her posts. Below are her choices for this interview:

This link is by Kodi Lee who is blind and autistic and just won the golden buzzer on America’s Got Talent. His relationship with music and his mom had me sobbing. The way he uses music as his life – I can relate.

Also Me by Taylor Swift because each Autistic person deserves to feel that “I’m the only one of me – and baby that’s the fun of me.”