Thursday, June 27, 2024

The Autistic Disparity and Gratitude to My Mother and other Supports

Recently my friends Jenna and Jennifer published their second book called, "The Actually Autistic Guide to Building Independence." I’m looking forward to reading it. ( I also contributed a quote again so yay!) At forty, I still have issues with independence and dependence. Their email announcing the book was timely. An incident had just occurred so I wrote back with;

"Congrats Jennifer and Jenna!!! You did it again !!!! I will definitely be ordering a copy …you ladies deserve some cake! I hope you celebrate with something decadent and delicious ! Bravo!!!!!!!You know this was timely: I’m forty now but still often feel …. Well, ya know how it goes … maybe the word I struggle with most is incapable. Tomorrow my (also autistic) son gets his cast re done from a hand surgery an hour away and it’s supposed to rain. I’m a terrible driver and lack independence that way. He’s better at driving but could be in pain after - so I had to ask my mother to drive him (as my daughter and husband were unable to move their jobs tomorrow.) In all honesty it makes me feel so incompetent as a mom, but also relieved someone more capable than I, will be there to ask questions in a hospital setting (I’m terrible at hospitals) and drive safely if it does thundershower. But yet I stay at home a little useless … Anyway, moments like these take me to the fact that I STILL rely on my mother sometimes, even though I’m forty with a mostly grown family! So I’m eager to read your book to perhaps help my children be a little less dependent than I am (though it’s not so bad with a good support team to which I’m grateful for !:)Anyway, thank you for sharing your gifts with the world! All the love and best!" Kmarie

Currently I’m also quite sick in the mornings. (This has been my typical mode for most of my life with conditions I have spoken of before. My magic number seems to be after 10 or 11 am for abating of intense symptoms.) With H Pylori I’m currently sleeping even more and falling asleep in the afternoons too - and if this sleep schedule is disturbed I feel quite sick. Thus, getting up at 7am to drive to the hospital also was a concern of setting my health back at least a few days. The hospital out patient setting gets my ulcer churning no matter how much prayer and meditation I do (and yes I’ve massively improved and know God is still with me which I’m grateful for.) I’m supposed to avoid general upset while the ulcer heals which is actually not the easiest. I’m not a strong driver. My son wanted to go to a government building downtown where it’s sketchy and I’m out of my element and he has a major injury. So, I texted my mother at midnight asking her to go in my stead and she graciously accepted taking a huge load off my shoulders. Then I promptly emailed the gals the above note.
                                       
Jennifer wrote back;
"You are so dear! 
And guess what? I didn't even BEGIN to learn to drive until my late 30s. TOTALLY could NOT handle it. Please give yourself some grace, dear one!!!You are one of the most amazing writers I know, an incredible mom and partner, and your home decorating??? Off the charts. So **I** would call you HIGHLY capable. We Autistic folx have certain astounding strengths and then maybe some areas in NT skills sets that we don't excel at. FINE. I take YOU. Unique and magical YOU. (Also, WHO is good at hospitals? YIKES.) (Who doesn't depend on their mom? My mom and I had a complicated relationship growing up, but I depend on her hugely now--and she on me. Glad you have this mother!!!)
okay, lots of upper-case feelings here, because you are wonderful. I hope all goes well with son/mom/storm. Love, JEB"

When I received Jennifer’s email I felt a huge burden lift off my shoulders. I smiled and felt immense gratitude.That’s what encouragement and acceptance can do! Genuine expressions of love cover a multitude of shortcomings.

Autistic people have a larger gap of disparity in their giftings and areas that require support. It’s not typically obvious to outsiders (either the gifts or the struggles depending on how good the masking abilities are of said Autistic person.) The areas I beat myself over are mostly in the motor skill department ( driving/ cooking/ adjusting to new situations… I literally learned last month how to pay for parking by myself and was so proud, but I honestly don’t know if I could do it at a different building without support again.) In general I come across as pretty capable. Some of this is confidence, some is age and letting go of perceptions, but in some situations - it’s also masking, in an attempt to salvage my dignity or the time it would take to explain, or the lack of desire to actually have someone understand. At this point, I don’t need that often, unless the situation is dire or I’m on the verge of panic (which I’m also good at masking up until breaking point.) I’m actually out of my element a lot. Yet, somehow my children have reached adulthood mostly unscathed and largely admired in the community. But I still have to mask my struggle each time I have to pay at a machine, drive somewhere, navigate a new person or system in a business setting, or deal with any sort of unexpected event.

On the flip side Jennifer is right. Each autistic person has an area they tend to excel in. I know an Autistic lady who can’t speak and is confined to a wheelchair but she writes the most beautiful stories on her device. I know another Autistic person who seems “normal” when interacted with and has a great career from home, but can barely leave his home due to massive anxiety. Which one has it better? Neither. They both have beautiful gifts and hard autistic realities. 

My mother tends to come through for me, or my children, in these circumstances on a fairly seasonal basis. When my husband is unavailable to be the main support - she often will be available. Especially for hospital trips or city excursions. When my children were younger it was for medical/ sometimes dental/ and most school functions or requirements before I pulled them out of school and into a much easier life! Even though my two older children are considered adults, both are on the autism scale, so both have needed supports in varied ways. We often joke that our family of five with our ranging disabilities make up one functional adult. My husband has ADD and my youngest struggles with Dyspraxia and slow processing speed. Yet, each of our gifts can outweigh the others weakness. Even with 5 of us, sometimes we require outsourcing, which is where people like my mother come into our picture. It’s rare. We like to be independent when possible… but when we truly ask for it- she is often happy to comply or finds it a non issue. This blows my mind. How can it be so easy to drive and be an adult? How can she put together a big family meal so easily? How does she know how to pay parking or navigate a new city street with ease? How can she drive in the bigger cities ? Or navigate concert venues and needed bathrooms? Or book tickets or hotels? Or travel without many issues? Or figure out government red tape? Or be a safe presence to my children in an uncertain situation? Or understand school facility jargon? Sometimes I look at my loved ones doing ordinary tasks and I’m honestly so struck by their presence. 
The other day, my best friend from grade 5 onward asked me to accompany her to the nearby city to get groceries because it had been a while since we had caught up. As we were walking around Walmart
I was hit with how much capability she has. I pushed the cart as she multitasked and narrated why she needed each thing or what else she needed. She picked up a head of cauliflower and compared it to another one and asked me which one looked better… I had no idea! Luckily, she decided at that moment and I just nodded along. Then she proceeded to tell me about the salad she was going to make with it and how it would be something simple to add to her supper that night. That would be a huge deal to me! It would be the main meal because I would have put all my energy into that ONE salad. It would be a feat on its own-  ha!



Then she went over to the jewellery section to find something for her daughter’s grad outfit, as well as to find some shirts for her sons for the banquet. We attended this grad banquet at this school, together, over twenty years ago. We both sang a duet together at the ceremony but butchered it because we were holding hands and trying not to cry… I sometimes do not feel much has changed since High School, and in other ways everything has changed. But the core of how I work hasn't exactly grown leaps and bounds. Anyway, the way she talked about each item so casually and didn’t seem to panic about cost, or figuring out how it would work in her budget, or having to check with her husband about the “right item,” plus the ease in which she found her items astonished me. I just enjoyed watching her. She inspires me and I adore her. I found it incredibly interesting and like I was studying an entirely different species …

This has happened before. Since grade 5 Rachael has baffled, astounded and supported me. She states she feels the same way about how I can read and absorb books so fast or understand large concepts. In the real world though my skills do not translate very far. I love going shopping with Rachael because it just looks so easy. I love watching her shop. It’s not something that I can do easily. The only shopping I’m good at is Plato’s closet bargains to clothe my family or Costco because I’ve memorized exactly what I need to get and what aisle everything is on, but I wouldn’t exactly call shopping otherwise my pleasure. Unless it’s for Reno's or Design for myself or someone else - then I’m in my element! I’m efficient at Costco because I’ve adapted the last 15 years, yet I still get butterflies and stressed out every time. What if there are not enough funds in debit at the time? ( I check and re check.) What if I missed something important? What if the food isn't packed properly and goes bad? How does one even decide how to put all these ingredients together to make a full meal that isn't spaghetti or tuna curry?

As much as I love watching Rachael shop, though, there is a part of me that comes home a little deflated. ( Not because of anything she has done except be totally amazing but due to my frustration with myself.) My husband can always tell. He usually comes up and gives me a hug and states something akin to, “You’re beautiful the way you are and it’s great that you love Rachael so much and she loves you, but you are two totally different people. Do not compare. You are not her. She is not you. You both complement each other and I love you just the way you are.” Unfortunately, my insecurity and bafflement at how someone can be so capable (and how did I miss grown-up school?!) often comes to the surface. I don’t feel like the grown-up in these circumstances. I still feel like the teenager. It can give a little bit of a beating to my psyche. I will struggle with feelings of inferiority. She grew up in these areas and while I DID try over and over again, I did not come to the same level of capability. I did, however, learn multiple work arounds and creative ways to look like our life is sort of "normal." I compare a bit though still in these areas. I truly do. Yet, I believe God gave us to each other for a special friendship for life. My insecurity is not her fault. I continually have to give that to God. Because that is on ME. But it helps to have someone else like Jennifer or my husband remind me that I’m still worthy simply because I exist ( and Rachael often reminds me too!) It’s why I used to end all my posts with that phrase. Because God continually has to remind me and thus I also need to remind others. In our weaknesses, God IS. Sometimes our multchy manure helps the good plants to grow. (Enticing ending right?)

Saturday, June 15, 2024

For the Father of My Children

*This post is based on the lyrics of Luke Combs 'Father and Sons' album songs 1 through 9 out of 12.*


To my Husband of 22 years, the Love of my life for 24 years, and the Father of my children of 21 years:

Luke Combs just released his new album entitled 'Fathers and Sons' and I was struck once again by the father that you are. I hit the jackpot with you as my co parent. Each song had a lyric that hit my heart...


1. "Walkin' through the front door, Hearin' "Daddy" at the top of his lungs, with his feet on the wood floor, Runnin' up to give me a hug...yea, that is what's it's all for, and the spotlight can't replace it, and in a heartbeat I would trade it, Cause it ain't got nothing on being front door famous."

I cherish the memories of our three children blocking the door, hoping you could not get through them, so that you would not leave for work. Sometimes they would even cry for a bit as you left. Then when you arrived home for break, for lunch, or supper, they would yell, "Daddy's home!" and run to the door. EVERY. SINGLE. DAY. Even as adults and older teens, I still often hear one of them yell, "I see Dads truck. He's home!" I feel this is a beautiful testament to the presence that you are to them. You are, and will always be, 'front door famous' to us. Our world is partially made by your schedule. Your arrival and departures mark our days. We anticipate your presence.


2. "In case I ain't around... make sure y'all still eat together at your mamma's after church Sunday, throw the (cat) a ball, take a walk and call your brother if you had a hard day...I just wanna make sure that you know I'm proud of ya. I wanna make sure that you know I love ya."


Remember babe, in the younger years, how we would constantly write letters, give instructions, and prepare our children in case we were not around when they were older? With special needs in varied ways, we wanted them to be even more secure, and KNOW they are loved. I tear up each time I watch the part in Harry Potter, when Lilly Potter is cooing to her baby because she knows she is going to die. Right before she sacrifices herself for her baby boy, she says gently and softly, "Harry, momma loves you. Harry you are loved. Harry you are special..." That moment reminds me of the culmination of all the tiny moments when we both whispered our unconditional love to our children and would desperately pray the words would stick. Another aspect of this preparation was encouraging their sibling relationships. I loved watching you invest in each pairing: the two brothers together, the sister with her younger bro or older bro, all three laughing and playing together...In each circumstance, you made sure to facilitate laughter, encouragement and conflict management skills. We would often tell them, "If mommy and daddy are not around, take care of your siblings. You are the next important priority to each other for unconditional love and friendship. They come before your friends in this journey, and then when friends also take important roles, do not leave your siblings behind. Incorporate them and you will have built in best friends and support for the rest of your life." We did things differently from many families. You were my partner in idealism. You backed me up in each counter cultural decision. I trusted you to secure our safety and provide all the foundations to thrive.


3. "When he moves too much and talks too loud, When I don't mind cause I'm finding out, That even if it's just time we're killin; it's never felt more like livin', They'll make you cuss and wear your patience thin. But next thing you know, they're all grown up and then, you're huntin' by yourself."

Ha! I recall each child talking your ear off while they followed you around the house. They wanted to help you with each chore or whatever you were doing, and they would definitely slow you down! Yet, most of the time you took the time. Maybe it was the copious amounts of country music we listened to which prioritized family, marriage, and children in the lyrics...or maybe it was the multiple podcasts and books we invested in about marriage and raising children... but I didn't have to constantly remind you about TIME. You soaked it up even when you were frustrated. You cried with them when they were heartbroken. You apologized if your patience was thin. You carried them when they were tired. You were there. Time and time again. You gave the most precious gift you could... yourself and your time.

4. "Just one more spin, I promise I will be good if you let me drive, this is so much fun...They're sweet like their mama, puts a smile on my face every time I hear em' say...Dad, you're my best friend."

Part of the reason you were such a good father, is how you loved me (their Mamma.) I recall our four year old son saying, "Daddy I love how much you love mommy. I think you are the best and I want to be just like you when I grow up." As the years passed, that sentiment was stated in different ways, but it remained unchanged. You were the one who taught them what a good man looks like. You showed our sons how to be an excellent father and husband, and you showed our daughter what to look for in a future partner so she will hopefully also experience a self sacrificial type of love. You put our needs first often. Even when it cost you. In turn, you became a type of best friend to each of us in your own way.

5. "You might choose a simple life, raise some kids and settle down, But you ain't gotta change the world to make your daddy proud...Now it might work out that you don't turn out anything like me, but I'll love whomever you turn out to be...And just because dusty boots and camouflage (country) are in your roots, Don't mean you ever gotta wear em, if that ain't you, I don't care. Yea, I used to love to sling that dirt up down them rural routes, But God might have a different map- dot plan for you mapped out..."

Philip, you are a wonder at giving freedom of expression to our children while still encouraging them to be respectful and self sacrificial in their expression. Sure, I may have a tougher time when my children do not tend to listen to country music as their first choice, or love the country smell of cow manure wafting through the windows, or fully embrace backroading ... but you laugh heartily. You often tell me "Don't worry honey, some of your ways will stick later in life. Some won't, but they will take our love and become whatever they need to be." You are easygoing in the little things that seem big to me. I tend to be easygoing in other areas of expression that you struggle with, and in that, we make a perfect team.

6. "I remember him ten feet tall and bulletproof, throwin me a ball in country boots (or steel toe!), a whistle and the dog starts runnin', a whisper and mamma starts blushing, a wrench in his hand and a beer in another, God couldn't make a man any tougher, and that 'S' on his chest is startin' to fade but I will always remember him that way...And there's a little more slow in his go, a little less rock in his roll these days...but the heart of a lion, beatin' in his chest...there's some things time cannot erase..."


This song had the tears slipping down my cheeks as I thought of the years to come, when your 'S' will start to fade, and who you are now will also change. Already, at forty one, you feel you're not as energized as when you parented at 20. Yet, in each stage, you have been this super hero entity, many times to our family. Sometimes, it did feel like you were bullet proof. When you hefted two 80 pound bundles of shingles up on the roof, or carried the piano down the stairs by yourself (still idiotic btw but a feat nonetheless), your super strength has been admirable. I love how you can take care of the things we can not. But one day, that special talent will wear off a bit. There will be less rock in your roll, but your lion heart of protection and strength will manifest in different ways. You will still make me blush and the kids will still either giggle or be grossed out. You will still find a way to protect us. These memories time can not erase.

7. "He's Spider-man in Walmart boots and a camouflage hat... I hope he never finds out that I didn't hang the moon, and I've never scared a monster out of the closet in his room, One day between him leavin' home and drivin' on my knee, Maybe I'll finally be the man he sees in me...When we get home, his mind is blown when I untie his shoes, and he smiles and says, 'Daddy, there ain't nothing you can't do..."


Awe man, when this song came on you ran into the bedroom stating, "Don't cry too hard Kissa. It was a beautiful time." You just knew that part of me was grieving the stages lost of Spiderman boots and scaring monsters with a song...you also knew if I let all my emotions out, I would not recover the rest of the day! But we had that time of being adored and being almost everything to three little ones. You were their hero and yes, babe, you are still the man they saw back then...you are still someone they come to when they need advice or friendship.


8. "I thought all he did was leave...but somebody played Tooth Fairy, left the cash, took out the trash, made Mama feel pretty, put a dent in the whiskey (coffee:), There were tip toes 's prayers and midnight kisses, 'I love you's' and little boy wishes, For Saturdays where we could play all day, But the lights stayed on somehow and love filled up my little house, Yeah, life ain't always what it seems cause I thought all he ever did was leave."

Presence. One of the best gifts a dad can give ... if he's one of the good ones. You were. Sometimes the little things made the difference. The smell of your coffee wafting told us you were somewhere in the house, the trash was always out on the curb the night before. We knew we could count on you to lock the doors and tuck the house into bed. You've cooked hundreds of nutritious meals after working outside all day. You created a beautiful home inside and out to nurture imagination and growth. You did not spend more than five nights away from me total in our entire marriage thus far. When you are away for a day you will phone at least once to check in. You put us first in all you do. You love to spend time with us and it shows. We are so lucky. You may have left us every day to provide, but you came home to us again and again and again and put personal dreams on the alter of sacrifice for the bigger dream of a healthy and present family.

9. "He said, 'Don't you blink, Soak it up cause next thing you know, You turn around and wonder where your whole life's gone. Remember it's about the journey, Don't fill your days with worry, Sure, them young in's drive you crazy, but you'll miss 'em when they're grown....True love and the gospel, might take a while to blossom, but you dig down in that garden and you plant them anyways and Just let God be the farmer, he's got the sun and water, It's up to him to let 'em bloom and let 'em see the light of day...Time ain't always your friend, so fill up your heart with love... pass it on before you go."

One of the first aspects that attracted me to you, besides your incredible arm muscles and hot smile, was your faith. We shared a spiritual bent. We were both the ones in our high schools starting Bible studies or wanting to talk about all things deep instead of partying. Even as our beliefs changed, grew, shrunk, evolved, and became throughout our marriage, we embarked on the journey together. Even when we were unsure about God and incredibly angry at the church and jaded with christian culture, we shared a yearning for the Spiritual and All THAT IS. Depth and Something Greater were in most of our conversations. We wanted to give our children choices so that when the time came, their faith would be their own. But we also gave them plenty of reasons not to believe. We made mistakes but overall, we showed them a shared journey filled with honesty, raw intensity, humble questioning and angry justice calling, tempered by an ever present (even when we did not fully know it) GRACE. We shared each stage together. We did not leave each other behind even if their were aspects of our faith we needed to traverse alone. This is the biggest legacy I believe you gave our children as a father and husband.


Even as late as this last week, they have heard you listening to the podcast on '5 ways a Woman Loves a Man's Strength.**'(https://open.spotify.com/episode/4SPO1BPGxpUhqzhtRG8ds7?si=9vQtd9NuQcOF2HV_fDfx-A&preview=none) They have heard me apologize to you for being too controlling and 'Mrs. Fix it.' They have heard you respond with your own apologies of selfishness. They see us in our 22 year of marriage, working once again on undoing our own selfish ambitions and trying to love each other as God calls us to. They see us trying to undo old damaging habits and trying to reach into the higher calling of sacrificial love. I think that matters. I believe you have given them some of the greatest gifts a person could pass on to another. You have woven a legacy of hardship and grace. You have shown pain and persistence, dignity and sacrifice, love and boundaries, growth and forgiveness, kindness and laughter, strength and vulnerability, and the daily act of BEING.

Thank you for being the father of my children. Thank you for being the one I think of when I hear songs of dads who get it right. Thank you for rising up to each day's challenges. Happy Fathers Day.





XOXO 

Love:

**We do not identify as Catholic however we like this podcast. We love their hearts and their marriage podcasts have particularly aided us.*


Song Choices: All the songs from Luke Combs album Father and Sons https://open.spotify.com/album/02GDaShX8vOw5tcak3OXow?si=fLa7bv6tQFuodq3-WW9jNQ&preview=none

Front Door Famous:https://www.youtube.com/watch?v=jccOBAE-rYc&t=2s

Plant a Seed https://www.youtube.com/watch?v=n5ZGRo-qnB4