#30facesofautism 2020 - Day 30

Day 30 - Well here we are! We’ve reached the end of another April, a strange and inside out April. This chick has had her world rocked amid this health crisis. Nothing has been normal or routine - but really when I think about it - is it ever? Being off schedule and slightly out of control is our “new normal” for now while I try to figure out what to try next to help her figure out how to function in it. The bottom line is we are together, we are safe and she is loved - and for her that’s good enough. 👍🏼 #30facesofautism

#30facesofautism 2020 - Day 29

Day 29 - Thinking about the future is always hard. None of us really knows what it holds. I never know from one day to the next what to expect. Baby Girl lives mostly in the now but she does have some aspirations! She’s ready to be a fourth grader, she wants to be a safety patrol one day and she wants to go to Clemson like her sister! Lucky for all of us those things are not entirely out of the realm of possibility, even college. Clemson has a program called Clemson Life that has been designed for students with disabilities that desire a post secondary education on a college campus and its AMAZING! Students live together in dorms with a resident assistant to help with independent living skills. Students learn about budgets and banking, functional reading and math, appropriate social skills, safety, health and skills for employment. Students even complete work internships.  They get to participate fully in all that campus life has to offer. The four year program is all about helping these students learn to be more self sufficient. Did I mention it’s AMAZING? The Grown Up Girl submits her very last college research project tonight meaning that our family will have its 6th Clemson alum. Could Baby Girl be lucky #7 a mere decade from now? You better believe it - because she sure does! 🧡💜🐅💜🧡 #30facesofautism

If you’d like to learn more about Clemson Life visit https://www.clemson.edu/education/research/programs/culife/

#30facesofautism 2020 - Day 28

Day 28 - I told you yesterday was a big day around these parts. Baby Girl had her school awards virtually and was celebrated for participating in Readers to Leaders, earning an A in Citizenship and getting AB Honor Roll! Her team of amazing teachers,  therapists, support personnel and family made some tough decisions last year about altering her academic plan to make it more appropriate for her. It has been the best decision ever! She is thriving while learning and able to show all the amazing things she can do academically. The highlight of the awards ceremony though was her recognition as one of the Soaring Eagles for her class! It is the highest honor a Creeker can get and is a student created award that honors those who exemplify the characteristics of a CCE Eagle. Baby Girl was chosen for the most perfect reason - being KIND! My heart nearly burst with pride. This video is worth the three minutes it’ll take you to watch it because it will remind you what absolute elation looks like and we could all use more happy right about now! 🦅 #30facesofautism

#30facesofautism 2020 - Day 27

Day 27 - Life with Baby Girl is full of ups and downs, kinda like being on a rollercoaster. Fast and fun. Scary and sickening. Exhilarating and exhausting. Predictable and unpredictable. Forwards and backwards. Some days we are right side up and on others we are upside down. Today was an up day - full of anticipation and excitement, celebration and smiles. As a sweet friend reminded me this morning - days like these are the ones we hold on to on the hard days. I’ll remember that the next time the rollercoaster starts to take us down - we’ll put our arms up together in the air and face the drop together.🎢 #30facesofautism

#30facesofautism 2020 - Day 25

Day 26 - with Baby Girl each day is such a wonder. I’ve discussed her picky eating habits before. Even though her palette has expanded over the years it is still limited. If we eat out I’m always having to think ahead about what she will or won’t eat. Earlier this year we ended up after a day of painting the house at a place she’s never been before. I didn’t have time to plan ahead. We sat down and she looked at the kids menu and proclaimed “I’m eating a burger”. 😳 I was in shock. I immediately started trying to negotiate something else for fear she wouldn’t touch it when it was delivered to the table. Nope. Her mind was set. Burger. She ate every single bite and loved it! Another reminder to never take anything for granted with her because just when you think you have it all figured out she ups and eats her first hamburger. 🍔 #30facesofautism

#30facesofautism 2020 - Day 25

Day 25 - While we are on the subject of felines it is time to address Kitty Queen, Baby Girl’s imaginary friend. She isn’t around 100% of the time but she hangs out a lot. Sometimes she goes to school or is available as a playmate at home. She even went to Disney with us last month - see her sitting right beside Baby Girl in this picture? Somebody is forever stepping on her or sitting on her which does not go over well. It seems that Kitty Queen is all the things Baby Girl knows she can’t be - her alter ego. Sassy mouthed, rude, loud, hard headed, and selectively deaf. She has done her fair share in time out and Daddy has threatened more than once to permanently send her to swim with the alligators out back! But - she is important to Baby Girl and is obviously a way she can sort out feelings that are in direct conflict with what she thinks she means and how she feels. The world is tough and confusing, even for me and I have lived in it a long time so if Kitty Queen is a necessary evil to help her cope then I’ll allow it! 😽👑 #30facesofautism

#30facesofautism 2020 - Day 24

Day 24 - So let’s discuss cats...I wish I could tell you her fearless love of dogs had transferred to her relationship with cats - but I can’t. She loves kitties but just can’t get past their stealthy movements. It’s all ironic because her imaginary friend is actually named for a kitty - but that story is a post for another day. This picture captured at our sweet friend’s home, with 3 sneaky little felines I might add, perfectly shows this cat and ‘mouse’ relationship! 🐈 #30facesofautism

#30facesofautism 2020 - Day 23

Day 23 - Thanksgiving night of this past year Big and Baby Girl were leaving my sister’s home in the country to go back to Granny’s well after dark. The roads are black and winding and they were in a car that was very new to Big Girl.  To make this story even extra LuLu was also in the backseat with Baby Girl. They were pulled over by a sheriff’s deputy because Big accidentally hit the high beams instead of the turn signal and illegally “flashed” another deputy. Right. Anyway...When we had gotten to my sisters earlier in the day the show Live PD had been on the TV and I had not realized Baby Girl was paying attention until she started asking questions. Remember I have to keep it simple. “They were doing something bad so the police are taking them to jail” was how I explained the stops with lights and handcuffs. We turned the channel.  Well pitch black dark, bright blue flashing lights, a jumpy, barking dog and an autistic eight year old are not a good combination on a traffic stop. I was on the phone listening as Big tried to explain to the officer while Baby Girl hollered over and over from the back seat “Please don’t take Sissy to jail!” “She’s a good girl!” Bless her heart. 🚨🐕💔

#30facesofautism 2020 - Day 22

Day 22 - Last year my post about ‘creatures big’ was all about how much she loved dogs BUT was also terrified of them. I know exactly when she became terrified - it was our completely spastic Springer’s fault. He has never been great around food and she so trustingly had her hamburger in her hand just off the table as he sprinted by - and snatched it out of her sweet little hand. Mayhem ensued. Poor Ford.  Even hamburgers suffered exclusion from Baby Girl’s life following the food snatching incident. This happened when she was like 4 and trying to keep them safely apart has been tough. Everything miraculously changed last fall. Our oldest had been volunteering for her sorority at an animal shelter. I think this helped fulfill her need for animal love while she was away and lonely at college. She ended up fostering one of the dogs, a rescue who had been abused, over a football weekend when we were up there. Avin knee she was keeping a dog and because she LLOOVVEESS them wanted to ‘’meet” her. When Big Girl walked in with this large Auskie - half Siberian Husky, half Australian Cattle Dog with one crazy blue eye and one intimidating brown eye and big old ‘all the better to eat you with’ teeth I just knew mayhem would ensue.  But something different happened - something I never thought I’d see.  This dog walked over to Baby Girl and just stood there close enough for her to touch her when she was ready, and she did! Baby Girl put her little hand on this dog and our whole lives changed. LuLu is calm and gentle, loyal and protective. It’s like somehow this dog knew what Baby Girl could tolerate and what she couldn’t. She has never pushed the limit. It has been so magical that she isn’t even afraid of Ford or any dog anymore. She begs to take care of them, to feed them, to love on and play with them.  It has been amazing to watch the transformation. 🐕#30facesofautism

#30facesofautism 2020 - Day 21

Day 21 - Baby Girl loves all creatures - great and small. She especially loves the classroom hamsters, Peanut and Butter. She likes to hold them, well the non-biting Butter at least, play with them and even read to them. Her heart for animals is so big. 😍 #30facesofautism. (No hamsters were harmed in this holding 😬)

#30facesofautism 2020 - Day 20

Day 20 - Puzzles. How ironic that my little “puzzle” is a wizard at completing them! She focuses like a little mad woman on turning the pieces and putting them in place. She studies the picture and organizes the pieces. She frustrates at the ones that don’t go in the exact place she thinks they should. She delights in the joy of putting that very last piece in to completion. A picture is always required to mark the occasion. This puzzle is one that happened to have been mine in childhood. Watching her little fingers work over the same places that mine did 40 years ago brings me to joy in knowing that even in all the differences there is so much the same. 🧩 #30facesofautism

#30facesofautism 2020 - Day 19

Day 19  - If you have been following our story you know what an event the dentist is! The first time we went she would only let the hygienist touch her teeth with a normal toothbrush with water on it. We’ve had to pay thousands of dollars for sedation dental work - it’s been a trip! And when I say trip I don’t mean a vacation because it cost so much it took the place of our family vacation that year. Well, this year our September check up was next level amazing! Dentist 3.0. She did all the things. She laid in the chair. She let the hygienist clean and polish her teeth, with the real fancy dentist tool. She had her teeth flossed. Flossed people. It was craziness and I just sat in the corner in awe of the drastic change. Speechless. When we took her up front at the end the hygienist let her pick out 3 prizes from the treasure chest - and she deserved all 1, 2, 3 of them!! 🦷🦷🦷 #30facesofautism

#30facesofautism 2020 - Day 18

Day 18 - This is another day where I’m writing about the unexpected. Baby Girl is sick. First sign - the nap I caught her taking at 5 PM today. 😴 The paleness followed and then complaint of a headache, which I’ve never heard her say before, then the puking started about an hour ago. 🥴Ugh. I’m not even sure how you get a bug when you are basically under house arrest! The good news is there is no fever, at least yet, and now she does tell me when she is going to throw up. 🤒 For years I wouldn’t know until it’s too late.  Even sick she is the sweetest ever and told me she was so sorry after throwing up the first time in a wicker basket with no bag in it. 🤮 🗑 When sister came running in the den with Big Milly’s remedy for throwing up, a cold washcloth, Baby Girl thanked her for taking such good care of her. 😓 Bless her sweet heart - I hope this is a quick one. 💚 #30facesofautism

#30facesofautism 2020 - Day 17

Day 17 - Baby Girl likes a task! She mostly likes things that are routine and repetitive. She flourishes in those situations. You can trick her to do things they aren’t preferred by making it a challenge. Teasingly - “Oh you can’t do it”.  “How long do you need” - and set a timer. She is competitive even though I’m not sure where she gets that. 😬 This year she has loved sorting dismissal tags right before we leave school each day. It’s monotonous but she loves it. It is predictable and calming and gives her purpose. The day is not complete until her job is done! ✅ #30facesofautism

#30facesofautism 2020 - Day 16

Day 16 - Since we are all about the things Baby Girl says I thought it’d be fun to let y’all ask a question BUT let her give you the answer. Disclaimer: Giggles and Baby Girl truth is guaranteed! 💗 #30facesofautism

#30facesofautism 2020 - Day 15

Day 15 - “It’s Tax Day!!” 💸 Baby Girl reminded her class this morning during a live lesson. Why in the world she would know even know that is beyond me.  I giggled!!! Walking out of the house on a cold morning a couple months ago I asked her if she needed a coat to which she replied in song, “I’m fine. The cold never bothered me anyway.” ❄️ Hilarious!  The girl also has zero filter so you never know what may come out of her mouth. Last week during her live online small reading lesson she told the group she had “to go and take her bath and to please not skip her when it was her turn to read” - somehow she managed to jump back on just in time for her turn. 🛀🏻Thank goodness she was fully clothed! Before I could stop her last week she put a mean face emoji on the comment of a class nemesis - I freaked and asked why - because you can’t delete them. She told me “he tells me to shush too much”. 😡 I about died.  Y’all. I couldn’t make this stuff up. 🤣 #30facesofautism

#30facesofautism 2020 - Day 14

Day 14 - I had a truly proud mother moment earlier this year. Not. Baby Girl made her way to my office at the end of the day with two “new to her” LOL dolls in hand. You might remember from the past that LOL dolls are her obsession. Well they weren’t new - new and Baby Girl has a cool slide of hand from time to time so naturally I assumed they were lifted from a poor unsuspecting friend. I immediately began questioning her and by 6 PM remember she’s exhausted and done so her answers were jumbled and guiltish sounding. Because I couldn’t get a straight answer I decided she needed to leave them at school until I could get to the bottom of who they really belonged to. She cried huge crocodile tears but I stood firm,  committed to disciplining this situation properly. On the way out I texted her school tribe with a picture of the evidence and a confession that I was sure she had grand thefted them and we would get to the bottom of it in the morning. By the time we got buckled in, the tears still flowing, a message from her Para popped up “Tickets baby!”. The realization of what I had done hit me like an eighteen wheeler full of LOL dolls. She bought them from the class store - with success tickets she had earned - likely for making good choices and the right things! I slammed the car back in park and we ran back in that school to get those dolls. I would have crawled over A million tiny LOL doll shoes to get them for her if I’d had too. She was beyond elated. I literally had to get home so I could lay on the floor and cry. I hate that autism had stolen my ability to clearly understand what my Baby Girl was trying so hard to tell me. Heck, an 8 year old should even be able to tell a pretty convincing lie if they wanted to but that is not our life. Ours is jumbled and hard to articulate or comprehend sometimes. Ours leads to misunderstandings, even for this Mama who seems to speak Avinese better than anyone else. As hard as it is, it also demands the need to extend more patience with her, which translates into affording us the opportunity to practice that level of patience with others. As I tucked her in that night I pulled her close and told her how deeply sorry I was - her precious and sweet response was “I know” as she hugged me tight and demanded extra kisses. I crawled back to the den floor to lay there and cry again - this time covered in the grace extended to me by a language impaired Baby Girl who really DOES understand. 🙌🏼 #30facesofautism

#30facesofautism 2020 - Day 13

Day 13 - My nephew graduated high school last June and we decided to let Baby Girl go. Four years prior when her Sissy graduated high school we had her sit it out. I was worried about how she would handle it and I couldn’t sit with her - I was on stage for it. Lots of people, big new place, an unknown bathroom, loud noises,  her Mama and her Sissy completely unreachable is not a good combination! Well, she loved it AND she loved celebrating the graduates - ALL the graduates. When I say ALL I mean EVERY SINGLE ONE! All 456 seniors that walked across that stage got a WHOO when their name was called. As much as Baby Girl celebrates herself - she is the ultimate champion for others! 🎉🎓

#30facesofautism 2020 - Day 12

Day 12 - Happy Easter! 🐣 It has been such a GOOD day and I am so grateful for it. Last Easter was a rough one for Baby Girl - today has been the total opposite - but that’s the way it goes. She loves a holiday but all the hoopla about them can be tough on her. She’s had a great day. She got a 🦄 bathing suit from the Easter Bunny, put it on almost immediately and then proceeded to wear it ALL DAY LONG. Breakfast - 🦄 bathing suit. Playing inside - 🦄 bathing suit. Hunting eggs -  🦄 bathing suit. Riding the scooter - 🦄 bathing suit. Eating Easter dinner with family - 🦄 bathing suit. It made getting a good family Easter picture impossible but I wouldn’t trade her exuberance today for a million pictures. 🤷🏻‍♀️ She even took a bath in it! 🛁 #30facesofautism

#30facesofautism 2020 - Day 11

Day 11 - Daddy is often working when we get home from school so they don’t always see each other every evening but they always talk on the way home - always. He runs through the day with her, each part, asking how it went and she always answers the same - routine. Until this one day about two months ago. Her school crew had been implementing a behavior plan with her to help her have a more productive day and she had been having really good success with it prior to the craziness. You could tell she seemed calmer and more confident. There is something to be said for knowing with crystal clarity what is expected of you and then being held accountable for it. So back to this rogue night - Daddy mixed it up and asked “What did you DO at school today?” If you are a parent you absolutely know what comes next 99.9% of the time - “NOTHING”. 🙄 Every educators favorite answer. Not Baby Girl though. I still beam thinking about her answer - with a giant grin she said “I don’t know but I was AWESOME at it!!” You have to admire the ability to not see the ways you are different or be hendered by the things that are tough or maybe impossible. We could all use that kind of confidence in ourselves. Lesson learned Baby Girl! 👩🏼‍🏫 #30facesofautism

#30facesofautism 2020 - Day 10

Day 10 - This will be a quick one! We are at intermission for Sister’s Movie Night - just in time to celebrate National Sibling Day! ! Baby Girl has begged to watch the new Trolls World Tour movie all week. Each time she saw the commercial she verified that it was coming out today and has been counting the days. It has been so fun to watch her absolute excitement in preparing for it. Everybody is in PJs, with pizza, popcorn and special cookies she made with me this morning in anticipation. She’s hopped from my lap to Sister’s to the couch - not distracting at all - in between singing and dancing of course! 📽 👩‍❤️‍👩 #30facesofautism

#30facesofautism 2020 - Day 9

Day 9 - I’ve mentioned the “groupings” each year that I’ve been doing these posts - lines, circles, orderly collections of things. Honestly they have all but disappeared until all of this isolation at home. I’ve never understood them exactly except that I felt like it created some kind of order for her - which is important. Makes perfect sense that they have not only reappeared but increased to daily frequency right now. Everything about her life Is out of routine so I think she’s trying to put her “things” in some kind of comforting order. 👱🏻‍♀️#30facesofautism

#30facesofautism 2020 - Day 8

Day 8 - Let me start by saying this is not what I had planned to write about tonight but sometimes things happen that are worth mentioning. Big Girl is in the living room online for a class and I was sitting down to chill for a minute after making her dinner. I was on my phone and all of a sudden Baby Girl was all over me. I was half paying attention and annoyed she was wallowing on me until I caught what she was saying. “I love laying on you Mommy!” I stopped in my tracks, put my phone down and let her settle into a place of comfort. I’m sure most people wouldn’t understand the significance of this but it is a rarity around here. During “real school” by the time we get home she is so spent she doesn’t even want to be talked to, truly neither do I, much less could she tolerate the physical contact. She laid in my arms and watched the entire episode of Ellen’s Game of Games, cackling at funny parts, sometimes answering the questions for the contestants and chit chatting with me about the things happening in the commercials. People. This just happened and it was such a precious, precious time and I am beyond grateful to have had those moments with just us. I snapped this quick picture and when we looked at it I screwed my face up because I look wretched - she looked at it and told me it was beautiful. So here we are - in a time that is few and far between - loving every sweet, snuggly, beautiful  second. 💚 #30facesofautism

#30facesofautism 2020 - Day 7

Day 7 - I’ve talked a lot about Baby Girl’s sleep anywhere ability. Sleep for her is so weird. Sometimes it’s totally normal and then other times I catch her sneaking into my room at 2:30 AM to get her iPad. She still requires a lot of rest - I think it is exhausting trying to take everything in, process it and then give something back. So much mental work! Some days she just takes that mental break where ever she can, in whatever place or shape she finds herself in and she’s out. 😴 #30facesofautism

#30facesofautism 2020 - Day 6

Day 6 - This may actually be my favorite image from the last year. It is TOTALLY Baby Girl. Never quite hears what everybody else hears, or says what everybody else says and certainly never does what everybody else does! The task here was independent reading and I present to you Baby Girl’s version. Independent of what those around her are doing -  reading by osmosis. Whatever works Baby Girl! 📚#30facesofautism

#30facesofautism 2020 - Day 5

Day 5 - It’s Sunday and that means it’s Steak Night! Sometime last October picky Miss Baby Girl decided she liked steak! A lot! I was stunned. She has a great appetite but a very limited menu she will choose from. Remember we had to have eating therapy when she was little. Well, when she found out you could cook the steak at home just like a restaurant it became a thing. Sunday is the only day everybody is here and not working so Sunday became steak night. She helps set the table and assists with the fixings as she can and then everyone must take their assigned seats to enjoy the meal together. When Daddy asked for his phone to take a photo tonight she  reminded him “no electronics on family steak dinner,” and we both smiled big. Time is of little relevance to her but she KNOWS when it is Sunday and starts asking about 1 PM  when we will cooking her steak so we can eat. It is precious and I’ve gone to look as forward to “family steak dinner” as she does. What I don’t always look forward to is the grocery bill - she prefers prime rib and filet cooked medium rare! She might not eat many things but the girl sure knows how to make what she does eat - COUNT! 🥩 #30facesofautism

#30facesofautism 2020 - Day 4

Day 4 - Let me start by saying I don’t believe in homework. We don’t do it. I let teachers know up front at the beginning of the year that we aren’t doing it and we will take whatever consequence comes from that decision. We just can’t. By the time we get home on school days it’s dinner, bath and bed for Baby Girl - who really doesn’t even want to be talked to by that time of the day. I’m not going to make the one and half hour we have as a family miserable by wrestling over doing it. Nope. Not gonna happen. Until...that one night she begged to do the math homework. What??? 😳 A page of fluency multiplication problems - she hates fluency and isn’t really fond of math. 🥴 Fluency is an issue because of the pressure of timing and she has a touch of perfectionist in her, the first in our family, of course. 🙄 But - she was adamant. She got her paper and her pencil and then commanded I get her a calculator. Do you think I could put my hands on a calculator?? No. Panic ensued until she pointed out I could find one on the phone - genius. 🤓 Part of the process in helping her feel empowered in math was to give her tools and teach her how to use them so that the torturous hard stuff became easy and she gained confidence - genius teachers. 🤩 The page of multiplication problems was completed in no time and she was beaming with a beautiful sense of accomplishment. 🥰 Maybe homework isn’t so bad after all? Naw... #ihatehomework #30facesofautism 

#30facesofautism 2020 - Day 3

Day 3 – Some of the motor skills were soooo hard and Baby Girl had to work very hard to master them, like climbing stairs, skipping, peddling.  Then without any reasonable explanation others came soooo very easily.  I’m pretty sure this girl could hula hoop for hours, days, even weeks without stopping.  She loves it and can literally do it with no effort.  My favorite part of this video though, is a throw back to that 96% I mentioned yesterday.  If you listen carefully you can hear that little hula hooping thing give her friend a sweet compliment.  An appropriate, unsolicited, unprompted, meaningful compliment. Kindness that came just as easily as her mad skills with a hula hoop. 

#30facesofautism 2020 - Day 2

Day 2 – It’s World Autism Awareness Day!  The focus for this special month is to embark on a Kindness Quest by making the world kinder and more inclusive of those with autism.  One of Baby Girl’s greatest attributes is that she is mannered, considerate and kind towards others about 96% of the time.  The other 4% account for those times when she is dazed, confused and things get totally out of her control. I asked her today to tell me what kindness meant, and her response was “use kind words to both my friends and teachers.” This is direct brainwashing from a social story she has heard many times, but that’s a story for another day and it made me smile.  Words are indeed a HUGE factor in how we can make kindness count for not just those with autism, but in the lives of ALL people!  So, in your own WORDS, comment below to help us define what KINDNESS IS…

#30facesofautism 2020 - Day 1

It’s April 1 – The start of Autism Awareness month, the return of my daily #30facesofautism posts AND April Fool’s Day!  I highlight the latter because I truly wish that where we found ourselves today was a joke – a BIG joke.  Being stuck ‘safe at home’, dealing with a pandemic and a child who has no idea what a virus even is, has been challenging – VERY challenging.  The thing she DOES understand right now is that she can’t GO to school and school is life for her folks.  There have been major tears because she misses her friends, her precious teachers, the “wholed school place” she says between sobs.  There have been major meltdowns over the loss of her treasured routine and behavior the likes of which we have never really had to deal with.  Awful faces, screaming, grunts of frustration and a mouth full of unkind words.  She actually hit her sister three days in, the person she loves most in this world. The sweet sister who is bravely trying to help her with virtual learning online, all while finishing her final senior semester at Clemson from the comfort, more like confinement, of our dining room. This is no joke, and none of it is funny.  Over the last week everyone involved has worked hard to try and make some order for her.  We’ve turned the dining room into a classroom and brought some of her learning tools home for her to use.  Her amazing teachers and therapists have labored over creating a schedule for her that was doable with assignments tailored to her unique needs.  Yesterday was a whole day of getting her student laptop to work properly and finding a set of headphones with a microphone so she could be heard during live lessons and language therapy.  We finally have all the parts and pieces of her functional behavior plan together so that it can be implemented.  I can see her trying to figure out this new normal and today there was even some joy during “school to home”.  Following her small group language session where she was able to hear and be heard, see and be seen there was an actual smile – no fooling!