#30facesofautism 2019- Day 30

Day 30 – WOW!  When you look back over this past year it has been an amazing year of growth for Baby Girl!  So many new experiences, lost teeth, new skills, changed behaviors, new likes, outgrown dislikes, longer hair, longer legs, louder laughter and bigger smiles.  It is really astounding.  I learn so much from being her Mama and I feel so fortunate that I was blessed with every moment, even the toughest ones.  She has changed me, made me more appreciative of simple things and able to look for joy everywhere.  She reminds me to be happy, happy, happy, and is there any greater gift than that?  #30facesofautism

#30facesofautism 2019 - Day 29

Day 29 – Today I proudly introduce you to Avin’s Tribe.  That is the name of the group text we are all on where the back and forth happens that puts everybody on the same page in the Book of Baby Girl.  “Did she have her medicine today?” “She’s having a great day today!” “Yesterday she told me I was soft and sweet.” “Seems agitated today…” “Ate a plain tortilla shell for lunch today.”  “She just ate half the fruit off my plate and all the ham!!” If I published this running text it could be its own blog!  These are the people she spends a great portion of her waking school days with.  This is her Para (who happens to be the Mama of one of her Big Sissy’s friends growing up) her two Regular Education Teachers (who are the perfect mix of skill and sweetness) and her SUPER crazy FUN Special Education Teacher (who happened to work in her Big Sissy’s third grade classroom and I also taught one of her daughters in Kindergarten).  They picked up right where her dream team from Kindergarten and First Grade left off and have loved and stretched her into a strong Second Grader who is fast approaching her next year with them as a terrific Third Grader.  They have embraced all her quirks and encouraged her strengths with just the right amounts of compassion and structure.  They have tried things, thrown them out when they didn’t work, tried again, taken their time, been patient, celebrated, cried, tried something else, praised, started over, been firm, used another strategy, stood their ground, asked questions, found answers, hugged, LOVED.  I am beyond grateful to know she is in their care each day! #30facesofautism

#30facesofautism 2019 - Day 28

Day 28 – I’ve talked a lot about the village it takes to help Baby Girl be her best self. She currently has three outstanding therapists who have been working with her for the past couple years.  The amount of growth has been amazing and so much of it can be directly contributed to the hard work and dedication of these three ladies. She works with the Speech/Language Pathologist for Language Therapy twice a week in a small group setting and they work on conversation, vocabulary, appropriate questioning, etc. Her Occupational Therapist sees her twice a week as well, in individual or small group and can provide support in her classroom, they focus mostly on these days on writing letters and numbers with the appropriate spacing.  Her Physical Therapist has been working on core body strength and coordinating extremities so that she can safely move up and down the stairs and throughout the school building, they meet once a week.  I cannot say enough about how important seeking out the help of professionals is for the development of children with delays – IT IS CRITICAL!  These therapies along with caring teachers have made all the difference for Baby Girl. #30facesofautism

#30facesofautism 2019 - Day 27

Day 27 – Today is really all about Baby Girl’s Big Sissy!  It really has to be because its her Big Sissy’s 22^nd birthday!  Their relationship is something I have trouble finding the right words to describe – its as atypical as Baby Girl is.  Even with Sissy being an adult it is still very sisterly in nature.  The little one doesn’t always listen and tries to aggravate the big one, she wants to dress up in her clothes and even hides her stuff.  The cool thing about Sissy though is that no matter what she never, ever loses her cool with Baby Girl, EVER.  She is patient even when it is hard – and just like with us, sometimes it is hard.  She has been a steady partner with us in this journey, a journey where one day she will likely find herself as the lead.  Smart, Funny, Kind, Beautiful, Determined, Loving, Giving.  Lucky us to have someone so extraordinary to lead if one day we cannot.  Lucky, lucky Baby Girl. Happy Birthday Sissy! #30facesofautism

#30facesofautism 2019 - Day 26

Day 26 – Baby Girl loves books! She loves to be read to and she loves to read!  She learned the alphabet super early and could go through sight word lists like a wiz. She learned the phonics rules but doesn’t always need them to figure out the word.  A lot of times once she has the word she just has it.  Thank goodness this has NOT been a struggle for her.  Really. THANK. GOODNESS. Now…comprehension is a whole other ball of wax but they are working on it all the time.  She cannot always answer questions about the character’s motives or tell the moral we readers should learn or discern the author’s craft.  She does seem to really enjoy STORY and that makes this storyteller’s heart happy.  She has a thing for series books and her current favs are Ivy and Bean, Mercy Watson, Owl Diaries and Dog Man.  She is ALL about DOG MAN, which is actually of the graphic novel genre! When I recently emptied her super heavy backpack following our school’s Book Fair I found 6 of these hardbacks inside – I had bought 1 on two separate occasions…but she had one for each day of the week the fair was open. Grand theft novel.  Luckily, we know the fairy in charge of the Media Center and she chose not to throw the ‘book’ at us! The ‘extras’ are now safely a part of the library’s collection! #30facesofautism

#30facesofautism 2019 - Day 25

Day 25 – A kid finally told Baby Girl she was weird. It was bound to happen because kids are just rotten that way sometimes. For all I know it has happened before this time and she didn’t notice or didn’t have enough language to express it. Of course, if I hadn’t been paying very close attention I would not have known it happened at all. One night after we got home from school I noticed she was acting out something odd over and over, making a strange face and saying something low, almost under her breath. I hit pause on everything and focused intently on what she was doing and then I heard it, “You are so weird.” I knew better than to draw attention to it and I quickly distracted her. It took a bit of detective work by one of her sweet teachers the next day to discover that it did indeed happen - the culprit fessed up immediately. My brain tells me she had no idea exactly what weird meant in the way it was being used to characterize her.  However, my heart knows there was an understanding of the meaning in that reenactment – the look on her face, in the tone of her voice, even in the way she was carrying her body. #30facesofautism

#30facesofautism 2019 - Day 24

Day 24 – Switching things up a bit tonight and asking if there is something your inquiring mind wants to know.  Is there anything about Baby Girl you are curious about?  Do you have any questions about autism?  Is there something I’ve shared you want to know more about?  Is there something you are wondering if we are dealing with?  Ask and ye shall receive an answer. #30facesofautism

#30facesofautism 2019 - Day 23

Day 23 – Sometime at school today Baby Girl got a little soft, cute monkey ball from the magnificent Ms. KK, my school’s magical Book Fairy, and she has literally not put it down. She has loved it, she has loved me with it, she had dinner with it and she even took it with her to her cousin’s high school senior band concert tonight. These types of events are always a little stressful because I just never know how they will go. The good thing is she loves music and its usually loud enough that even if she asks me a question a little louder than one should talk in an auditorium, no one is really the wiser. Well tonight was great until about 30 seconds into Rhapsodic Celebration mister groovy monkey managed to escape her happy little hands and roll clear down the sloping floor of the auditorium and out of sight. You know those people that work for the police who talk people off ledges? I’ll bet they have hours, no years of training.  I am not trained people. I had to talk my way through 3 more minutes of music using every single negotiating skill I had to keep her from freaking out completely and crawling over every parent in front of us who was filming their senior child’s last performance ever in high school. Did I mention we were in the second to the back row of the auditorium? Let me confirm for you this very minute that I know firsthand prayer was said in a school tonight. The cool thing is that at my nephew’s freshman band concert this would have ended mayhem – no doubt.  But tonight here’s the real celebration, we made it. It was tough, but she collected herself and waited for the applause before she hurdled towards the aisle, only to discover our dear neighbor about twenty rows down had felt it hit her feet during the song and was holding it up, looking for the precious child who had lost it.  Oh sweet, sweet rhapsody. #30facesofautism 

#30facesofautism 2019 - Day 22

Day 22 – As many as 4 out of 5 people with autism can suffer with chronic sleep issues.  I feel truly blessed this isn’t a big issue for us as it truly can be for many families dealing with autism.  Sister still needs her sleep.  I’m not sure if its how hard she has to work at making order out of the chaos around her or what, maybe it’s all the early rising.  She still races us to her room when its bedtime and sleeps well at night. She is a kinda like one of those cute little fainting goats when she’s in a car, more than a few miles and its lights out, especially at the end of the day or on a trip.  I can look back after a bit and see it in her eyes and then all of a sudden – she’s gone.  #30facesofautism

#30facesofautism 2019 - Day 21

Day 21 – Happy Easter!  In general, today has been a pretty rough one for us. Lots of off behaviors, some out of character rudeness, whining, arguing, noises.  I’m not sure if its all the fuss of the day – the routine is off, folks are in and out, weird food, there are brightly colored eggs to find and pretty new things to play with – who knows? I sure don’t always.  All this leads to lots of corrections, directives, crying, and frustration - for everyone.  Even in all the NOISE of the day there are still glimmers of hope – what this day is truly all about anyway.  During a brief reprieve from the growling Baby Girl was happily sidewalk chalking while I sat and breathed in the beautiful afternoon.  Dad gave the warning that he was going to turn on the loud compressor in the garage and before I could do a thing to protect her she hopped up, flew inside yelling, “I’ll be back”.  Before I knew it she was back on the driveway, sidewalk chalking like nobody’s business.  The compressor was loudly chugging away but SHE had protected herself with her sister’s old beats. SHE had protected herself.  HOPE. #30facesofautism

#30facesofautism 2019 - Day 20

Day 20 – Folks with Autism frequently have a special interest.  It could be an object, lights, a game or numbers, really ANYTHING.  For some they can be so single-minded about it that it becomes an obsession.  Baby Girl does not really have an obsession, per say, but she has a very great affection for L.O.L. Surprise! Dolls. She is all about them and knows everything about them.  Glam Glitter Series. Bling Series. Under Wraps Series. Confetti Pop. Lil Sisters. Big Sisters. Pets. Moms of little girls – do ya feel me?  It is all she wanted for Christmas this year and I have it on good authority that the Easter Bunny will be making a delivery of a Hair Goals one this very night!  They are a surprise because they are wrapped up about three times and in some cases locked with codes that have to be cracked before you can even get to the doll.  It’s so funny how a kid who doesn’t like to be startled loves to be surprised when she finally unwraps a doll she had no idea she was picking out.  You get what you get, and you don’t throw a fit – works for me. #30facesofautism

#30facesofautism 2019 - Day 19

Day 19 – If you saw my Pre April post then you know Baby Girl has problems with her teeth! I do not understand why but the permanent ones come before the baby ones are ready to let go which means she is left with rows of snaggily looking, raggedy teeth - like a shark! That sweet angel baby face with a shark’s smile.  She will NOT wiggle the jiggly ones either – nope.  They can be hanging on by one-onethousandth of a millimeter of a speck of gum and they will just dangle there blowing in the wind.  The front set of chicklet twins were a disaster for mmmooonnnttthhhsss and what do you think rolled around right at the height of the buckiest? School.  Pictures. Lucky for us a slight mishap involving the headboard, a lot of blood, two visits from the tooth fairy in two days, a trip to Target, and one big beautiful smile came just in time for picture retakes.  #30facesofautism

#30facesofautism 2019 - Day 18

Day 18 – Before making that first trek to Disney last year with Baby Girl we made the decision to buy a tracking device for her. Sounds weird I know but getting help if she got lost in a crowd would not be one of her skill sets.  I read and researched for months before settling on AngelSense.  It has GPS that works on WiFi and Cellular.  We paid for the device and then pay a monthly fee to use the device, they have several plans that parents can choose from based on need.  There are several different sensory friendly ways it can be worn that are not removeable without a special key.  Guardians for the account, and there can be as many as needed, can download a mobile app that allows for interaction with the device that includes a number of features.  You can set parameters for known places so that if a child elopes all guardians can be alerted.  The device has a 2 way voice speakerphone capability meaning you can call into the device to give a direction to the child.  It has an alarm mode that can be activated that will sound to assist in location if the child were lost.  There is a runner mode that shows the exact place of the child wearing the device and your location, with directions, on a map.  I could go on and on describing the different safety and lifesaving features.  We only have her wear it in large places like theme parks, where there are crowds that could make it possible to become separated – another one of my worst nightmares.  Baby Girl calls it her ‘walkie’.  You can see it peeking out in this picture from the zoo.  You would not even be able to tell it was there but it gives us tremendous peace of mind. #30facesofautism

#30facesofautism 2019 - Day 17

Day 17 – Remember how I told you that Baby Girl and I stayed away from the business end of the room during the entire visitation at the funeral home? Well this one is a smarty and while I know she didn’t really get a good look at the wonder that was laid to rest inside she had put two and two together.  When we pulled up to the curb for the graveside service she immediately looked over at the tent and said, “Oh look, Grant’s bumped bed is here.” I could not help but smile and tell her she was right.  I had coached on the ride over to Greenville about how we would have to sit still, be quiet, and wait to play with the new toys once everything was over.  Her favorite things to do in the world – sit still, be quiet and wait – NOT! She took me by the hand and walked proudly in her brand new outfit over to the rows of chairs, that just so happened to be covered in dark green velvet…she sat, but immediately began to pet the chair which was directly in front of the preacher.  Give me strength.  Miraculously everything went smoothly, even when the preacher belted out Gran’s favorite hymns acapella, my little parrot sat quietly.  As soon as the service was over and everyone got up she politely asked me for her toys and began to play right around the chair as the adults chatted and milled about.  Kids are resourceful.  Did you know that the leg of the metal stand a coffin rests on at the graveside can double as a slide for a doll?  Well I didn’t either until Baby Girl launched hers right down it into the hole in the ground! You should have seen me trying to convince her to get her arm out of the crack between the two – the stand and hole that is, because we would absolutely not be able to retrieve it!  At this point I decided it’d be best if we waited in the car with the iPad.  Off to the car we went to wait and wait and wait.  After quite some time she hollered out at me, and I’m NOT kidding, “Hey, can we go now?  The show IS over!”. I died.  Laughing.  I couldn’t help it.  We dressed up, there were rows of fancy seats, she had to be good, a man sang – show.  Simple. What is also simple is the pleasure I am absolutely certain it gave Gran to know that at the foot of her grave there is a doll last held in the hands of her sweet Baby Girl.  (Explaining Death Part 3 of 3) #30facesofautism

#30facesofautism 2019 - Day 16

Day 16 – During those first couple days after Gran passed away we had to make the necessary arrangements for her funeral and burial.  For that first visit to the funeral home Baby Girl had to tag along because big sister had a class at the same time.  She did great while we sat at the conference table to go over the details and I wrote the obituary to go to the local paper.  I knew what was coming next and was not really sure how it would go – I was fully prepared that we would not be able to even go into the coffin room to choose one when it came time.  I know firsthand how difficult that visual can be.  We approached the door slowly and her eyes grew so big, “Look at the beautiful bumped beds Mama!”.  I think she was going for ‘bunk beds’ and I could not help but smile.  Her attention turned almost immediately though to the floor – to the deep pile, super plush, perfectly vacuumed tracked dark green carpet – something the likes of which she had never seen before.  Before I could give a directive she was on it, face down, arms out, moving her fingers through it.  There was no stopping her – I couldn’t even get her attention – she was in heaven, or with Kevin, she was content and happy and unbothered by the grief around her. This same coping mechanism continued the next evening at the visitation.  We stayed on the far end of the big room way away from the business end with some new toys I bought as distractions for the occasion.  What did Baby Girl do the whole time you might wonder?  Play with the new toys?  No.  She made carpet angels.  Sensory stuff.  It’s funny how jeans or a tag or the line on the toes of socks can send her over the edge but then a certain jacket, or that blanket or the thick, soft carpet in a funeral home can bring comfort. (Explaining Death - Part 2 of 3) #30facesofautism  

#30facesofautism 2019 - Day 15

Day 15 – Last fall Avin’s beloved “Grant” passed away pretty suddenly.  Chris’ grandmother was 88, still lived alone, drove and took great care of herself.  As part of the routine we always had to stop at Gran’s on the way home from going up for a Clemson weekend. So on a Sunday in mid September Baby Girl kissed her goodbye, little did we know that she would be gone just over a week later.  Gran always took time for Baby Girl, she played baby dolls with her and had her a little snack treat for her of some sort.  Often while we were at the football games she would come four houses up the street to her daughter’s house, where we were staying, to play with Baby Girl while she was staying with her Granny.  It had gotten to the point where even riding into the neighborhood she would ask to stop in to see “Grant”.  I had no earthly idea what I was going to tell her to explain this death.  How in the world do you explain something like this to someone without the language needed to comprehend.  No context.  So abstract but SO very concrete. Didn’t want her to think that just because you get sick you die, didn’t want her to think that when you go to sleep you die, and I didn’t want her to think she just disappeared.  I finally decided the least amount of most direct words was best.  I reminded her of the dog we used to have, Grits, and how we don’t see her anymore because she died and went to heaven.  I said, “Baby Girl, Grant died and she went to heaven and we won’t see her anymore.”  I took a deep breath and waited.  She said ok.  Exhale. I repeated this several more times on the six and half hour ride up with her, “Grant died and she went to heaven.”  I thought ok, we are doing ok here.  As we approached her house upon arrival she hollers from the backseat, “Let’s stop and see Grant!”.  Total failure.  I asked, “Do you remember what I said about Gran?” and she replied, “Yes, Grant’s with Kevin!”. Kevin is her uncle, her Daddy’s brother and Gran’s other grandchild.  If only he really did have Gran, and Grits the dog, too. (Explaining Death - Part 1 of 3) #30facesofautism

#30facesofautism 2019 - Day 14

Day 14 – Yep.  The thing I have absolutely dreaded happening since the day Baby Girl entered school finally happened to us this year.  If you lean in real close I’ll whisper it to you so Judgey McJudger over there doesn’t hear…lice.  Yes.  Lice.  In that mass of curly, super tangly hair.  Yes, the little girl who barely likes her hair brushed, much less picked through for hhhooouuurrrsss, got lice.  And when do you think I found it?  On our late school night, after dance, when she was in the bathtub. Thank goodness Walgreens isn’t far and Dad was out picking up food. She sat in the tub while I started stripping every bed and bagging every pillow and stuffed animal in sight.  The treatment and then nit picking – literally – began at 9:30 at night.  I have to say that lice is no fun AT ALL but it was not near the nightmare I was anticipating it to be with her.  She was actually very good about it – it totally helped that I told her there were bugs in her hair – she does NOT do bugs (or bees as she calls all bugs).  She just kept saying, “get all the bees out Mama,” while she sat and I went section by section through the mane.  Lice is a big issue in Florida and so the posse at school hopped right in the next morning to double check my work and pull out the last few nits I missed after my eyes crossed and Baby Girl’s head started to nod about midnight.  Note: Ulta carries a line of all natural products called Fairy Tales for lice prevention.  We now use the shampoo, conditioner and detangler spray because there will be no more bees for Baby Girl or me! #30facesofautism

#30facesofautism 2019 - Day 13

Day 13 – Routines.  Some of them stick out big time as a way Baby Girl brings about order to some of the chaos I know she lives in.  Others come about over time without me noticing at first but when I stop and think about it I see it. If it’s the weekend that means you will find us at our local Mexican restaurant. MezCal Cantina is Baby Girl’s favorite so if she is choosing that is where we are headed and it has been that way for years.  She loves the food, eats well and often has to have “leftovers” (which may even be a whole other meal we had to order) to take home for breakfast the next morning. Rice and black beans at 6 AM anyone? Sometimes restaurants can be overwhelming but familiarity seems to bred content in this case.  The front room is larger and open but if they are super crowded they will seat us in the private dining room in the back so she doesn’t get out of sorts from crowd and all the noise. She will actually use their bathroom – no automatic anything – YES!  It also doesn’t hurt that they dote on her.  She doesn’t even have to order anymore – they know what she wants and it is usually being placed on the table before we have even settled.  A cake and candles has suddenly appeared so they could celebrate her birthday with her.  Magically she seems to always have some toy from the machine, even when I forgot to bring quarters.  It was just the two of us tonight and I really sat and observed – she has established the routine that makes her feel comfortable here and trained the rest of us around her to meet that need.  La niña es brillante! #30facesofautism

#30facesofautism 2019 - Day 12

Day 12 – The gut is at the center of lots of current discussion about total body health.  There is no denying the benefits of taking probiotics.  There is also much study being done about the connection between gut health and our kids with autism.  One issue in particular is the balance between the good and bad bacteria in the gut and then what is happening with the yeast that is also there.  An overgrowth of yeast is bad and for kids with autism it can be a precursor for some problematic behaviors. There is a laundry list of symptoms ranging from inappropriate laughter to aggression that can result.  For Baby Girl some of the signs she has experienced from an overgrowth of yeast have been excessive climbing, an extreme increase in hyperactivity and inattention, intense irritability and making noises.  All.  The.  Noises.  A round of antibiotics, a diet heavy in carbs or too much sugar can all lead to this overgrowth.  It takes about a 30 day round of Diflucan (prescription yeast killer) to “heal” her gut, in addition to the probiotic she takes each day.   We are currently in the middle of treating one of these episodes and this time it was so bad before I put all the signs together that she even had a rash on the back of her leg – an outward sign of yeast overgrowth. I’m not perfect – remember.   I’m pretty sure a recent round of antibiotics was the culprit, it also doesn’t help that she is the granddaughter of both of her grandmothers – who happen to be and to have been sweetaholics. #30facesofautism

#30facesofautism 2019 - Day 11

Day 11 – Let me begin by saying thank you for the overwhelmingly positive response to the article that was posted on Jacksonville Mom yesterday.  I tried to read every comment and your kindness was almost more than my heart could take.  Thank you for accepting and embracing us.  We love you all!  So while we are talking about embraces…yesterday was also national sibling day and I would be remiss if I did not address Baby Girl’s relationship with her big Sissy.  My Grown Up Girl fully embraces every part of her bond with her “bug”.  When they are together it is as if no one else matters – they love each other fiercely.  They also miss one another terribly with Grown Up Girl away at college and they interact daily.  Just talking on the phone is rarely ever good enough – I don’t know what we would do if it weren’t for FaceTime.  Baby Girl’s face says it all! #30facesofautism

#30facesofautism 2019 - Day 10

I was invited to write a guest post on autism awareness for Jacksonville Mom.  I was absolutely honored to be asked.  The article was posted today so for Day 10 of #30facesofautism visit my friends over at Jacksonville Mom to read Lessons My Unicorn Taught Me.

#30facesofautism 2019 - Day 9

Day 9 – Because of the sensory issues often associated with autism spectrum disorders temperature regulation can prove tricky.  It may be freezing cold and they feel hot or mid Florida summer and they are chilly.  I could definitely say I have seen this with Baby Girl.  I can also tell you that you never want her getting too hot ever – because if she does you will see what she ate for lunch again. Furthermore, she does not understand the purpose of a jacket.  To her its another article of clothing.  She puts it on and it stays on, all day long, no matter the temperature, no matter where she is, no matter what she is doing.  I have tried to explain that she does not have to wear it all day, I have demonstrated, I have argued, I have pleaded and finally I have just given up.  She wears one when she wants one and doesn’t when she doesn’t, but like a good Girl Scout I am always prepared with one on stand by just in case she changes her mind. #30facesofautism

#30facesofautism 2019 - Day 8

Day 8 – At seven and a half we still have a monitor in Baby Girl’s room and honestly, I don’t see this changing anytime soon.  In fact, we had to buy a new one recently when the one we got for her as a newborn finally died.  Why, you may be wondering, am I tuning in to my seven year old’s sleeping habits? Well its not the sleep I’m worried about – it’s the waking.  The first thing you need to know is that Baby Girl is a morning person, an early morning person.  Like an awake before 6 AM every morning, bouncing out of bed, gibber jawing about whether you had a good sleep, asking for a big breakfast, HAPPY person.  Let’s be real clear here – NO one else in my house is a morning person. There is no big breakfast at 6 either, you get a pop tart and you like it.  I can barely put together coherent thoughts at 7:30 when I am rolling into school (ok, ok at 8). The madness that is Daylight Savings Time just needs to stop.  It is awful for us and it takes weeks in the spring to get her not to get up at 5! At 5 AM I’m a cave woman.  The best thing about Baby Girl is she just starts the morning routine whether I’m moving or not so here is where the monitor comes in.  When routines and a lack of understanding about safety intersect there can be unexpected consequences – like finding your child up in the middle of the night midway through her morning routine because she thought it was 6 – it was 3!  The older she gets the more independent she becomes but there is still a very childlike innocence that requires us to be overly diligent.  I have to hear and know when she is up and on the go.  The listening in is an absolute must to make sure she is safe. #30facesofautism

#30facesofautism 2019 - Day 7

Day 7 – For kids that struggle with focus, attention and hyperness (ADHD) you have to wonder what happens inside their heads.  I imagine it to be a scrambled nest of “squirrels” darting to and fro while a symphony of white noise plays – how maddening.  What I continue to notice though is that Baby Girl misses nothing.  She can be watching a video on her ipad, playing with her dolls, making noises, moving and repeat something we have said in a conversation she wasn’t even a part of! It is multi-tasking at a level at which I don’t think we “regular folks” can even understand.  It is scary amazing.  Car rides are next level and there are a few things that NEVER go unnoticed, no mater how fast they are whizzing by or what else she is doing: yellow vehicles, cows, McDonald’s signs, horses, cement trucks and goats colored all (when pushed for explanation as to what color “all” was it was explained that “all” is black, brown and white ones – duh Mom). #30facesofautism

#30facesofautism 2019 - Day 6

Day 6 - Baby Girl still has a great love for ALL things music! Her current requested playlist includes songs from The Greatest Showman, Darius Rucker, Ed Sheeran, The Eagles, Whiskey Myers  and Post Malone. Eclectic! She also still plays the piano in our home frequently and has now started singing along. Her grade level performed a holiday musical this year and she had to have the musical recordings of all the songs so she could learn every note perfectly! Chris also moonlights as the DJ at our school dances and she loves watching him work the equipment. I got the chance to observe the instruction in her music class this year - perk of the job - which was exceptional of course. I found myself unable to take my eyes off of Baby Girl though. She was mesmerized by every little sound, every little motion.  Complete focus. For a hyper little chick with attention issues this is quite an extraordinary feat. She was determined not to miss a single thing the teacher said or did and complied with every directive immediately. It was magic. It was the music. It’s funny to me how a kid who is so sensitive to sounds engages totally with a medium that is nothing but. Her incredible music teacher says it’s time to try some lessons this summer...perhaps Baby Girl will find her voice in a whole different way. #30facesofautism 🎼

#30facesofautism 2019 - Day 5

Day 5 – Last year I introduced you to Baby Girl’s fixation with the line.  Welp, it’s a new year and she’s making new lines.  We’ve got school yard lines, playground lines, conga lines, and llllooonnnggg lines.  In full disclosure that long line photo was totally edited to protect the lazy, I mean the innocent – nobody needs to see my unkempt house with piles of laundry on the outskirts of the line.  I also noticed that there are several “figures” who appear to be inappropriately suited for the line and remain as outliers.  No idea why.  New and most recently this year Baby Girl is proud to now present – GROUPS of lines!  We’ve got big groups and small groups, we’ve got ginormous mosh pit groups and we’ve even got dinosaur groups made at school where they each have their own names.  That compulsive need for order obviously still exists.  What I love most though about how her lines have transformed over the last year is that they are no longer exclusive to one type of “character”.  Everybody is included in the group!  It is truly symbolic of who she is as a human.  She doesn’t care who you are, or what you are, or where you came from, or how you look, if you are big or little, short or tall, have one arm or two, if your Barbie hair’s gone crazy or your wing has broken.  I’m pretty sure she wouldn’t care if you weren’t wearing pants (as long as you’re a doll that is). My point is that for Baby Girl everybody is welcome in her group, as long as you make sure to stay in line. #30facesofautism

#30facesofautism 2019 - Day 4

Day 4 – Since we are on the subject of dogs, we’ll continue - we have one, and a cat.  Baby Girl LOVES them, except she really doesn’t.  Confusing isn’t it?  If you ask her she will tell you she loves them and she will gush about a picture or a video of a cute puppy or kitty.  But in reality she is terrified of both.  They are too unpredictable – the dog is too hyper and the cat is too sneaky – neither of these work for her.  She cannot tolerate being startled – think back to the hand dryer incident.  Same type of thing.  We can keep it under control at home although it requires us facilitating some separation between her and the dog.  Poor Ford.  Baby Girl facilitates her own separation from the cat by always knowing precisely were the cat is and then herding her into my closet, and then shutting the door. Poor Gracie.  It is hard though when we are out in public or at a friend’s house with animals – she and I are both a ball of raw nerves.  I was raised with enough manners not to want to make my hosts feel bad about my seven year old screaming at or running from their sweet precious pup who wouldn’t hurt a flea or their 25 year old cat who hasn’t moved off the ottoman in months.  I end up doing nothing but apologizing and trying to run interference.  I know the fear she has isn’t rational but I can tell you it is real.  It’s time for us to take the dog out and Baby Girl will put his food down for him and make sure he has water while I walk him on the leash because she loves him in the only way she can.  Then after bedtime I’ll go let the cat out of the closet…#30facesofautism

#30facesofautism 2019 - Day 3

Day 3 – Last year I told you all how NO was Baby Girl’s go to word, for years – even when she didn’t really mean it. Over time it decreased in usage and even, when appropriate, transformed into being said politely.  Then one day it just disappeared.  That is so exciting, right? Wrong!  You want to know what it was replaced with? Before we go there I want you to scroll up for a hot minute and look lovingly into that beautiful little angel baby face with those big eyes, long lashes and bright smile – go on, I’ll wait for you……………………… super cute right??? Now imagine having that precious little thing growling at you – like a dog. G.R.O.W.L.I.N.G. People.  Growling is the new NO around here.  It usually only happens when there is a directive about the activity she is engaged in or needs to be engaged in or needs to stop being engaged in. Ugh.  Absolutely a direct result of frustration on her part which leads to the growling which leads to frustration on the adult’s part. Lack of adequate language, routines, inappropriate responses and atypical behaviors are all part of the package.  Luckily, if you could ever count a time when your child communicates with you in canine as lucky, it is not as frequent as NO used to be nor is it done with true anger and aggression.  There is no intent to be disrespectful – she doesn’t really even know what that is. I mean I guess just yesterday I did say some days she IS a puppy, but geez.  So for now we are here trying to figure out how to “retrain” ours.  Sure does make it easier that she’s so cute! #30facesofautism

#30facesofautism 2019 - Day 2

Day 2 – Let me begin by saying a heartfelt thank you to everyone who helped us LIGHT THE WORLD UP BLUE for Autism Awareness today.  I am so grateful to each and every one of you for your support of us.  It dawned on me today that Avin has no idea that she is autistic, or has autism, or experiences an autism spectrum disorder, or whatever other PC way you want to use to characterize her uniquely differentness. Some days she IS a fairy, or a puppy, or a princess, or a mermaid.  She IS a second grader, a reader, a writer, a game player, a dancer, a friend.  She IS polite, loving, spicy, brilliant and opinionated and beautiful.  She IS a niece, a cousin, a sister, a daughter, a granddaughter.  And quite frankly, most days – she IS a unicorn, but that’s a post for another day. So, this morning after she put on her blue I decided I should at least try to tell her we were wearing it "to make people aware of autism".  I have to keep it real, REAL simple with new vocabulary for which there is ZERO context.  I said this several times on the way to school and asked her to repeat what I was saying and she did – sometimes that helps.  Just know that autism comes out autistim every single time.   As we were turning into the parking lot I switched it up and asked a question - Why are we wearing blue today?  Her reply – I’m cceelleebbrraattiinngg people with autistim!! That’s right Baby Girl, because no label will ever define you – you, my dear, will always define who you are for yourself! #30facesofautism

#30facesofautism 2019 - Day 1

It’s April – which means it’s Autism Awareness Month!  A whole year has passed and much has changed for Baby Girl as she has grown and matured.  Along the way I found myself collecting a list of things to share with you this month in an effort to help reveal even more “faces” of autism we have found reflected in our family’s journey.  Even though 365 days have come and gone I find that my goal is still the same – to help others understand, accept and LOVE.  Tomorrow is World Autism Awareness Day and I would love to encourage you to help us raise awareness about people with Autism Spectrum Disorder across the globe as we LIGHT IT UP BLUE by wearing blue for our own Baby Girl tomorrow!  If you do please post your pic and tag us with #30facesofautism