#30facesofautism - Day 30

Day 30 – I have intentionally saved this post until last, quite frankly because I knew it would be the hardest one to write.  As a parent you cannot help but wonder about the future when you bring a child into this world.  Who will they be? Will they be happy?  Will they live a good life? Will they find love?  I have all these same wonderings plus about a million more.  Having a child with autism means there are just as many unknowns but other potential concerns the majority of parents don’t have to contemplate.  These worries are even further compounded by the fact that we are older parents.  Will she ever be able to live independently? Will she be able to tell the good people from the bad?  What will happen to her when something happens to us? I have faith folks, a whole mountain of it BUT I have to think about the future for her, for all of us.  I will also admit that there have been times where I felt afraid.  Since her diagnosis about every six months this fear has created an oppressive ball of anxiety in my gut that had to be talked through and out with dear friends. I have shed a river of tears. Our Big Girl turned 21 this past Friday.  I am so proud of the young woman she has become.  She is smart and talented and kind – she has the biggest heart, most especially for her baby Sissy.  Her desire has long been to study in hopes of helping children like her sister – she remains on that path in college today.  She has dealt with roadblocks and challenges but has persevered.  Love. Patience.  Skill. Determination.  She has everything inside her that she will need to be able to take Baby Girl by the hand if fate requires that we let go.  I am always so stuck watching them from behind, grateful in knowing that no matter what may happen they will be fine facing a future together.  #30facesofautism

#30facesofautism - Day 29

Day 29 – When you are the Principal having your child attend school with you can be the greatest blessing.  It could also be a gigantic curse if things aren’t going so well. My school is filled with extraordinary people and Baby Girl’s village is BIG.  But things were tough when it was time for her to start school and even though I felt like inclusion in a regular education classroom was the right choice for Baby Girl I was not sure.  I was worried about everything. Would she sit and attend for instruction or story time? Would she be able to show them what she did know? Would she learn to read? What would happen with the bathroom situation?  Would the dining room overwhelm her? Would she melt down and cry and disturb the entire class?  Would the other children like her? All of that kept me awake at night - plus the fears that every parent has when their baby starts school.  I knew she would need the perfect blend of love, kindness, compassion AND high expectations, structure, accountability.  I also knew we needed a team who would look past my role and be real with me as her Mama.  It has not always been easy.  We have all questioned ourselves and our knowledge, experimented with different instructional approaches and supports, and joined forces for a united front when necessary.  We have also celebrated the highs (there have been TOO MANY to name) and we have worried and wept together at the lows (which have thankfully been few and far between).  They took her in as a barely tamed Kindergartner and have transformed her into an amazingly confident first grader who will be ready to brave second grade in August!  Pictured is the education arm of Baby Girl’s dream team from the past two formative years, her expertly skilled Exceptional Student Education teacher, her two masterful Regular Education teachers (who happened to also be her older sister’s K and 1 teachers), and her precious Para (who it just so happens was her preschool teacher). They have poured love and learning into her and it has challenged and changed her life forever.  PS – The second photo is of the two precious souls who made extended daycare work for her all this time.  They have been loving and patient beyond measure and I am beyond grateful.  One of them is lovingly referred to as her second mama.  They both just get her and have provided much needed respite for us even outside of school as well. #30facesofautism

#30facesofautism - Day 28

Day 28 – We’ve been a part of a dance studio family for about 19 years.  My oldest took dance from 3 on and Baby Girl started about the same age.  I wasn’t sure about how it would go with her – it was around the time we were really struggling to get a handle on communication, some physical issues and behavioral struggles.  We actually let her try it out in the summer first to see how she would do.  While I know it had to have helped that her dance teacher was the precious person who kept her the first year of her life it could have truly been problematic.  I was up front and honest about my concerns from the get go and they worked with me to make sure there was some extra support in the classroom.  They take extra care with helping her for pictures and at recital time to make sure she does not become over stimulated or anxious.   She loves it and now takes two classes, a combo ballet/tap class and a jazz/acro class.  It is great physical therapy for building core strength, allows for lots of opportunity at social skills practice and has helped her build confidence.  I always giggle at recital time as she spends half the time on stage looking for us in the audience – even though she knows every step of the dance.  When the video arrives in the summer is when I really get to see her performance in our living room and then she watches the recital video until she has taught herself every other group’s dances, too!  Dancin’, dancin’ – she’s a dancin’ machine! #30facesofautism

#30facesofautism - Day 27

Day 27 – Hey everybody, its Chris (aka Daddy) guest posting today.  The need to feel exhilaration… You know how when you lean back in a chair and you start to fall backwards but catch yourself at the last possible second?  That feeling you have in your stomach, well Baby Girl seeks that like Dabo Swinney seeks 5 star recruits. (Go Tigers!)  She will climb anything, a rock wall, a play set, a ladder – anything to get her up off the ground.  There is absolutely no fear. It is not uncommon on a swing set, after she has waited her turn, to find her going as high as possible while leaning back so far her ponytail sweeps the ground.  To date not a roller coaster has been found that she will not hop on and then beg to ride over and over.  Maybe this came from when she was younger and she wanted me to throw her into the air to land on our bed.  That adrenaline rush feeds something inside her.  At 3 she would take the big wheel to the top of the hill at her great grandmother’s house and just go – hands in the air, legs kicked out wide so she could go faster than she could peddle, laughing all the way down.  What does the future hold - skydiving, bungee jumping, mountain climbing, hang gliding? We’ll have to wait to see.  As her Daddy I hope she can always find this feeling of exhilaration – just safely.  #30facesofautism

#30facesofautism - Day 26

Day 26 – Potty training.  I mean really, how hard can it be? Hard. Super hard when your child has a straight up obsession with/fear of the restroom.  Baby Girl has a true love/hate relationship with toilets.  It all started off ok when she was a toddler.  She was using it pretty normally and only having an accident every so often at preschool. About 3 she definitely became interested in checking out every facility we came across.  It was literally the first stop in every home, store, restaurant, gas station, rest stop, plane, train and automobile – you get me.  Now, just because she visited did not mean she was interested in using them.  Public restrooms can be torture chambers y’all.  A McDonald’s restroom visit in Georgia on a trip to SC one time almost killed us.  I had taken her into the stall to change her into pajamas and a pull up when this little devil child angel proceeded to make the loud hand dryer go off over and over and over and over again while Baby Girl cried and screamed her head off in sheer terror.  Through the stall wall I begged that awful mother to make her child stop.  She told me to mind my own business. Her obsession turned to fear.  For a month after she would not step a toe inside a bathroom with a hand dryer. Overtime that worked itself out but the damage was done. Automatic faucet – you first, automatic paper dispenser – not so much, automatic flushing toilet – NO and automatic hand dryers – well, take a guess - NEVER. I have bathroom stories for days people.  Black toilet seats, split toilet seats, a porta potty on a field trip – have mercy. The bottom line is she will ‘go’ #1 at school, at home and occasionally at the highly frequented restaurant but for most excursions we have to wear a pull up, even at 6 and a half.  Not sure exactly what the hang up is with #2 but if it ever happens in a toilet we will have a party and there is a standing $100 reward to anyone who makes this happen. So by now I’m sure we must own stock in ‘disposable training pants’, I keep waiting on that check to arrive. #30facesofautism

#30facesofautism - Day 25

Day 25 – Baby Girl loves music, all kinds, and always has.  She seemed to connect with sounds even earlier than she did words.  Singing, playing with instruments, repeating noises she’s heard and even speaking sometimes in a sweet little melodic voice are favorites.  Every time we get in the car she chooses a favorite from her playlist on my phone to start the trip.  She knows the name and the artist and sings right along – she surely gets this love honestly because her Daddy and I both have a thing for music.  She used to spend a lot of time as a toddler playing at the piano in our living room – she would start out randomly playing notes that usually ended up sounding like something.  Last summer at camp I was amazed to find that she also loved karaoke and got right up in front of everyone to sing.  Sometimes it can be such a blessing just to “let it go” and not give a hoot about what others think and just be present in your own moment.  #30facesofautism

#30facesofautism - Day 24

Day 24 – I’ve mentioned judgement a time or two in these posts.  I will tell you now it is one of the toughest things about our situation.  Having opinions or drawing conclusions about a situation is normal and working all that out in your head or offering advice when you are asked is one thing but letting all that out of your mouth unsolicited as you look down your nose is quite another.  It is hard enough to raise a human without having someone comment unnecessarily or impart their totally ill informed wisdom on you in the midst of a situation they could not possibly fathom.  Just to look at Baby Girl does not give you any indication of her struggles, it also provides the perfect opportunity for those out of the know to make a judgement about her or our parenting when those struggles surface.  “That child is just spoiled.” “There is no reason that child shouldn’t be potty trained.” “Can you believe they let her run around like that?” “That child has no business being out in public if she behaves like that.” She’s too old for that pacifier.” “What is wrong with her?”  All of these things plus have been uttered through smirked lips or whispered loud enough for all to hear or just flat out said directly to our faces. I’ve yet to find a child that came with an operator’s manual and each and every day I am doing the very best I can to “troubleshoot” without instructions. #30facesofautism

#30facesofautism - Day 23

Day 23 – Baby Girl loves her iPad.  She got one for Christmas several years ago after a couple years of her wanting to hold our phones all the time.  Before she was 1 she could swipe on the baby apps we had loaded.  She really only got to do it when we went out to eat or needed her occupied out in public.  When she almost sent a crazy picture and text to my boss I knew it was time to do something.  After she got her own ipack (as she called it for quite a while) she was obsessed with it.  It went everywhere she went even though she didn’t always have to be using it – it was part of her routine and routines are life for her.  As she has gotten older it is back to being something she uses but mostly when she needs some alone time.  She has some learning games, some games just for fun and watches videos and movies over and over again.  Don’t worry – I got all guiltified when we had to take her for an eye exam earlier this year and were told by the professional that technology was ruining children’s eyesight.  Her eyes are perfect, as is the condition of her iPad due to an apparently indestructible case.  The use of it, right or wrong, has afforded me dinner from time to time, car rides where I did not want to rip my hair out by the root, a nap here and there, and some peace in times of turmoil. #30facesofautism

#30facesofautism - Day 22

Day 22 – To give medicine or not, that is the question.  Every parent has to answer that question for themselves, along with the guidance of their doctor.  It’s controversial as heck because people are so prone to JUDGEMENT.  Question – if your child had diabetes would you not give them insulin because you didn’t want them to be on medicine?  I’m just asking for a friend.  I did not want my child to be language delayed, or struggle to focus, or have crazy, curly hair, or be on the spectrum but guess what? She has/is all those things and it is my job to do everything I can to help improve her quality of life so that she can be her best self. Period.  So I read, and research, and ask questions, and cry, and feel guilty and inadequate, and on occasion I eat too many doughnuts, and then I buck it up and we make an informed decision in an effort to do the very best we can for her. Remember how I told you that Baby Girl was blurry because she never stopped moving. Well you have to wonder - if their bodies are that busy then what in the world must be happening in their brains??  She currently takes three supplements, two of which she has taken since before she started school.  She was truly struggling in Kindergarten and her teachers knew she knew more and could do more so last April we made the decision to add a medication used to treat ADD/ADHD.  Folks, I am here to tell you it was a game changer for US.  There are literally 3 school days between these two writing samples.  The first one is before med and the second one is after.  The video is the same day as the second writing sample and her second day taking the medicine.  Her teachers had gone over the plus and equal sign with her the first day, just one time.  Prior to having taken the meds she could not have gotten past “Daddy has four cookies”.  So this time I invite you to pull your JUDGEMENT out and use it.  Did I make the right call? #30facesofautism

#30facesofautism - Day 21

Day 21 – Sleep has never been an issue for Baby Girl.  I feel so lucky because I know that it can often be a real challenge for our babes on the spectrum.  She sleeps about 10 hours at night – the only downside is that she is a morning person, and an early morning person at that.  Nobody else in this house is.  I’m not going to lie either, I enjoy the peace and quiet alone time that is afforded to me because she goes to bed early and I stay up pretty late.  I need it.  No matter how good a mother you may be you need disconnection from your children for a bit or you will go stark, raving, lunatic mad.  You know I speak truth.  There is no drama at bedtime either.  Most nights she initiates the routine, the same routine we have had since birth.  She did not stop taking naps until about midway the year in Kindergarten.  If fact she was so exhausted during the school day that the first half of the year she had to lay down for a bit in my office instead of going to resource.  If not she was an absolute bear.  She still falls asleep on the way home in the evening pretty regularly, especially on dance night or if we are at school later for an event.  She can also sleep anywhere, anytime and in any shape. #30facesofautism

#30facesofautism - Day 20

Day 20 – I never really wanted a bird but sometimes the Lord sees fit to give you a baby for your 40^th birthday instead who actually turns out to be a cute little parrot.  Early on when language therapy started Baby Girl engaged in a lot of echolalia.  The official definition of echolalia is when children copy sounds, words, and eventually phrases and sentences that they hear adults use in specific, repetitive context.  It is also important because it supports certain aspects of cognitive functioning.  While the echolalia is not the major component of her day to day interactions anymore I can tell you that the level to which she can repeat exactly what she hears remains.  Autographic or Echoic memory is specific to retaining auditory information and hers is strong – very strong.  Routines, plays, songs, movies, and bad words all are destined to come right back out exactly the way they went in. Yeah, you read that right.  In Kindergarten she came home a few days in and started calling out names (as she was lining up the pigs).  I realized pretty quickly she was calling out the names of the children in her class and then one day I realized she was calling them in alphabetical order exactly how her teachers called roll.  What gave that away was when she called Jamie, Jamie, turn around and pay attention, Jamie (name changed to protect the innocent).  She absolutely loved when we played along. #30facesofautism

#30facesofautism - Day 19

Day 19 – You ever heard something once and could repeat it exactly as you heard it or seen something once and could remember it? Yeah, well me neither.  Not Baby Girl though.  She has a scary, super freaky, crazy awesome memory.  She really only needs to see something once, maybe twice and she remembers it.  I will never forget the day I realized she knew every letter of the alphabet, well before 2, when she barely had a 10 word vocabulary.  Nobody taught it to her either, she saw it and she knew it.  I dare you to challenge her to a game of Memory Matching/Concentration – you will get schooled.  Learning to read came pretty easily, or at least the word calling did.  Comprehension is a whole other ball of wax – you need a better handle on language to move into the more complex aspects like determining purpose and understanding inference.  What is so cool about it is that it isn’t just near photographic it’s also “audio”graphic, but that my friends is for another post on another day… #30facesofautism

#30facesofautism - Day 18

Day 18 – Lest you all think its sunshine, rainbows and unicorns over here let’s talk about Baby Girl’s most used word of all time…No.  For a good while a few years back it was always No.  Come here. No.  Stop that. No.  Sit down. No. Pick that up. No. Put that down. No.  She even said No when the child actually meant yes. Do you want a hug? No (while she was reaching for you).  It’s bath time. No (it’s her favorite). Let’s read a book. No (while she was handing you the book). Do you want some candy? No (she would live on it if I allowed it).  No. No. NO!  Bless her.  She said so little for so long that at first it was endearing and then - it wasn’t.  Let me tell you that when you have to live out every aspect of your life as the “authority figure” there is nothing as humbling, or infuriating, as having one of the sweet, beautiful, precious little creatures that God helped you put on this Earth tell you No. All. The. Time.  It didn’t matter what I said or threatened or how I looked at her.  And given my profession, I have looks, in fact I have more looks than a fashion magazine. Fruitless.  Absolutely fruitless.  Bless me.  Strong willed runs in both bloodlines, shocking I know, but this was beyond that.  As she gained more language, and some manners, the just flat out no became less and less.  At least now it’s usually followed by thank you which makes it a whole lot easier to swallow in polite company.   The No still comes in waves though, even now. In fact, we are currently riding one of those waves.  I’ve noticed that it resurfaces its ugly little declarative head immediately following a huge spurt in language.  Why? Heck if I kNOw. Bless us all. #30facesofautism

#30facesofautism - Day 17

Day 17 – I did not expect to be writing about this tonight but one must bask in the glory of the unexpected graces.  It was family BINGO night at school and Daddy had a meeting so Baby Girl was with me.  She sat beside me as I called BINGO, ate her dinner, played BINGO herself, helped me put the balls back in the wheel, won some, lost some, and joyfully celebrated and cheered for herself, me and everyone else.  There was no whining that she didn’t have my undivided attention, no tears when numbers were called that were not on her card and no meltdown when she didn’t win at every round.  Tonight would not have been possible even a year ago.  I could tell she was tiring as it grew closer and closer to her bedtime and the end of the night – in fact she fell asleep before we could make it the 20 minutes home.  She has grown and changed so much – maturing at such a rate.  As I watched her tonight I found myself marveling at a precious, shared time I was not sure we would ever be present in. #30facesofautism 

#30facesofautism - Day 16

Day 16 – About 4 years ago a friend gave us a small indoor trampoline which still resides right in the middle of my den floor.  When we first got it she was either jumping on it or sitting and playing on it.  She jumped so much I would swear her insides had to be scrambled.   She loved it.  She uses it less than she used to but every so often I will still catch her bouncing.  They are great for kids who need to work on coordination and core strength, which helps with improving motor skills in general. They are not so great for “mature” mommies and daddies who bottom the thing out trying to act young and bouncy. The real bonus is that it is also great for helping with anxiety, which Baby Girl struggles with.  Vacuum out – it becomes base. Company comes over – she’s jumping.  There is something about that sensation that meets her sensory needs and provides comfort.  A year and a half ago our doctor helped us figure out the proper dose of a special supplement that helps significantly with the anxiety.  We upped the dose recently and the difference was amazing – perhaps one of the main reasons our little bunny hops less and less. #30facesofautism

#30facesofautism - Day 15

Day 15 – Language has been the MAJOR issue for us since the beginning – it’s why you are reading about it again.  Baby Girl has been in language therapy since just after she turned two.  There have been times of slow and steady growth and then other times of “holy moly” growth.  When I stand and look back it is astounding the difference, but you know that is all relative – she is still pretty far behind.  I can clearly remember the day she strung a whole bunch of words together into a sentence that expressed a desire and made sense for the first time.   June 6, 2016 was the day and at about 7:53 AM this precious little thing looked at me on the way out of the door and said, “I need brown baby ride the car with me.” I stopped dead still, typed it into a note on my phone and then marched myself back inside to get brown baby ASAP.  Let’s be clear here - I would have crawled through shards of broken glass to get brown baby if it had been required.  That little sentence was BIG.  Right now we are in a stage of exponential growth.  This morning while I was eating my breakfast she asked, “Are you enjoying your meal?”  I stopped dead still, typed it into a note on my phone and then proceeded to enjoy every morsel of that biscuit with a huge grin on my face.  Now I know this came directly from her Lunch Bunch which doubles as Social Skills Therapy but I do not care that it is learned language.  That is precisely the point – she’s learning how and why words work and how to use them.  So AMEN to that! #30facesofautism

PS -There’s some research out there about Methyl B12 (the vitamin) and its impact on the brain and language – she takes one chewable tab a day right now and we have all noticed a difference.

#30daysofautism - Day 14

Day 14 - A dear friend reminded me of something I wrote a couple years ago.  It has laid on my heart all day so I thought I might as well share.
November 6, 2015 - On Wednesday morning, while walking my sweet language impaired Baby Girl into our school for her language therapy the most wonderfully small but precious thing happened.  She had taken me by the hand, as she does every time, so that we can walk safely across the traffic lane, but held on longer than usual.  Normally when we cross onto the porch she drops my hand and happily races to the door of the greatest school on earth.  In those few extra moments the most extraordinary thing happened. I'm sure what she said was simply something she has heard in a book or movie before but in the context of that moment it was the most beautiful thing I've ever heard.  In her lovely little sing songy voice she uttered "you and me forever"...and I have yet to fully recover.  I have no way of knowing whether or not she understood what she said to me meant, but I can tell you it meant the absolute world to me.  I could have easily missed those four little words.  Having a child who struggles to understand or communicate has taught me so much about how to really, really listen, how to focus on the context of every interaction, how to pay the closest of attention to every little small moment. She's absolutely right...you and me forever baby girl...you and me forever.

#30facesofautism - Day 13

Day 13 – To the left, to the left, everything goes in a box to the left…yep, Baby Girl is a lefty, FINALLY.  I say finally because for a long time you just couldn’t be sure which way it was gonna go.  Early on she was pretty equally skilled at using both the right and the left.  That sounds awesome right? Who wouldn’t want to be ambidextrous!  Yeah, well, that’s all good until somebody points out that long past when your brain is supposed to declare a side in typical development your kid is using both and not able to “cross the midline”.  Those are fancy, technical words for only using the right hand to do things on the right side of your body and vice versa with the left.  There is no reaching across the midline of the body to do stuff and that’s bad.  Dyspraxia.  That’s the really fancy, technical word.  Fixing that midline problem takes effort and working on improving motor skills requires practice, building strength and improving coordination.  Occupational Therapy to the rescue.  She started when she was two and a half and has basically gone once a week since. At about five she declared her loyalties and the left it is. Midline, shimdline – she’s got that under control now, too!  BOOM!  PS – I wish I had taken the pictures below directly head on because it would really be easy to see the fine midpoint line and how she picks up the food only with the hand on that side.  Watch the cupcake – her favorite food of all time. #30facesofautism

#30facesofautism - Day 12

Day 12 – Being a “mature” mother has many great benefits. One is wiser and way calmer.  In fact it really only has one downside. Toddler.  Birthday.  Parties.  I can easily imagine that for all moms over 40 with “typical” children they are simply dreadful.  I am here to tell you that when you have a child who is very busy, language delayed and with a few behavior quirks they are absolute hell on earth.  When Baby Girl was in preschool I swear to you it seemed we got invited to one a week.  That was all well and good when I had back up and Big Girl and I could two man team the situation but then she had the nerve to up and go to college.  I was left to face the brutal birthday season all alone.  There were those indoor gym places (I don’t gym), the jumpy places (I don’t jump), the over the top themed parties at the clubhouse (alright, alright I know that used to be me), pool parties (an absolute no without Big Girl backup) and then, there is…THE PARK.  Once, just once, I made the mistake of taking her to a party there alone.  I almost died people.  Died.  It was the single most stressful hour of my life.  I could not keep up with her – remember she was BLURRY.  She would not come to me when I called her.  She did not understand the danger of strangers, the street, splinters or jumping off the top of the play structure.  She did not care about the cake or the presents or even socializing with the other party goers.  The tantrum she threw when it was time to go will go down in history.  You may be asking why I went week after week.  When you are trying to face the facts early on there is a strong desire to try and experience the “normal” while teetering between denial and acceptance. Luckily our toddler years are over, I survived and Baby Girl loves a party – she will even get off the slide happily when asked. #30facesofautism

#30facesofautism - Day 11

Day 11 – Lines.  Baby Girl is a little obsessed with the “line”.  She likes to be first in line, a lot of kids her age do, right? Alright – her passion for being the line leader is intense.  Her Kindergarten teachers broke her of this compulsion, or at least melting down when she didn’t always get that distinction, pretty quickly but I see her.  I watch her calculating where she sits at lunch or what moves the para is making that indicate they are about to get in line. She places herself at the most opportune place at just the right time to position herself for the ready.  Smart, smart cookie. Now at home she still tries to herd us back and be first going down the hall to bed or to the car in the morning or in the queue at Disney.  I pick my battles folks.  This same fixation also applies to how she plays quite often with some of her toys.  I could absolutely kick myself for missing the first “line”.  She had about 25 of these little jokers waiting in line while one of them sat on the little potty from the dollhouse.  Pure genius.  I can only wonder if “lines” help her find order and create sense out of some of the chaos that comes when your expressive and receptive language aren’t connected to your age.  Over time, as she grew and matured, the lines sometimes popped up as Peppa “crop circles”.  Each perfectly thought out and formed.  My all-time favorite is the circle of “BBQ” (Peppa is a pig people) on the grill! #30facesofautism

#30facesofautism - Day 10

Day 10 – It’s National Sibling Day!  There is nothing quite like the relationship between Baby Girl and Big Girl. It is precious and complicated and PURE.  I can still remember the look on Big Girl’s face when we told her we were having a baby.  She had longed for a sibling for years and years.  From the very first minute she got to hold that baby she has been absolutely smitten.  I can also tell you that Baby Girl prefers her to absolutely anyone else – perhaps it is because she showers her with time attention and PATIENCE.  I have never once seen my Big Girl lose it with her, no matter how difficult she was being or how big the tantrum.  Watching the two of them together is the best.  They laugh and smile and LOVE each other so BIG. #30facesofautism #autismawareness

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#30facesofautism - Day 9

Day 9 – What Baby Girl lacked for years with general, conversational language she did not lack for in manners.  Early on she learned the rules and they are a part of her “routine”.  In fact they are so embedded in her social routine that she even says thank you after you have spent the 15 min wrestling and negotiating to give her medicine that is so awful she gags.  Seriously.  Learned language is a skill for her once she gets the main context down.  I am beyond grateful manners are one of those skills.  It makes it seriously easier when she is telling you off kindly with a “No, thank you” while being offered a non-preferred food or activity.  She also very consistently worries about the needs and health of others, another learned language skill set.  “Are you ok?” is a routine question anytime someone coughs or sneezes or appears ill at ease - even when the 30^th kid has coughed for the 537^th time.  Even if her manners and kindness towards others is “learned” I can tell you they are said with appropriateness and sincerity.  But when I think about it, isn’t that how all children end up with manners – they learn them and then they learn how to use them? #30facesofautism #autismawareness

#30facesofautism - Day 8

Day 8 – Baby Girl is still sick.  Yesterday while she was curling up into a ball on the sofa she hit herself hard in the month with her knee.  Hard enough to really bust her lip open – which is something she really only allowed me to look at this morning.  When it happened yesterday she barely even teared up and certainly did not cry.  I tried to comfort her but she would have none of that.  For a long time she did not seem to feel physical pain like the rest of us, or maybe she felt it but didn’t respond the way the rest of us do.  It worried us a lot – you could never tell how serious something was.  We’ve seen her knocked off her feet while walking in front of someone swinging and be thrown three feet without so much as a whimper, fling herself back and hit her noggin on the headboard full force and keep going.  Administer ice? NO.  Clean the area? Absolutely NO.  Bandaids? Only in the last about 18 months and they are to stay on until they fall off or she turns 21, whichever is first.  No one removes the bandaid.  No one.  Only recently have I seen her react a little more, actually show an outward sign that she was hurt.  Once or twice she has allowed us to comfort her when these boo boos happened – but only on her terms.  This was her first skinned knee and it was from a rough tumble on the concrete driveway while running and playing with our neighbor.   There was barely even a reaction – she was and still is one tough little girl. #30facesofautism #autismawareness

#30facesofautism - Day 7

Day 7 – I quit being in a dazed state of denial and said the words “I’m worried” out loud to my pediatrician one day. I’ll never forget the look on her face – she knew that I knew – and she knew that it was time for action.  Twice a week language therapy, and once a week occupational therapy began immediately.  The speech pathologist also started feeding therapy (who knew there was such a thing) because the child would only touch about 5 foods.  All of these therapies continued with a private provider while I figured out to engage the public school system in the county where we live (it is not the same one where I work).  Early Steps and Child Find to the rescue.  Once I was able to register her into my system the ball really started rolling.  Exceptional student education services started and eventually physical therapy was added.  Luckily she graduated from feeding therapy years ago and has a much wider palate.  I could never put into words how grateful I am for those first providers that loved, challenged and changed my girl!  Y’all, there is nothing as important as early intervention, NOTHING. This is our first day of therapy.  I’m sure I had just snatched PACI out of her mouth because – JUDGEMENT. #30facesofautism #autismawareness

#30facesofautism - Day 6

Day 6 – Well, this is not what I expected to write about tonight but the fever and strep that jumped on Baby Girl today was not expected either.  She is hardly ever sick and honestly it came at a most inopportune time, just as I was trying to balance a 7 million dollar budget and do para evaluations!  Life.  I hate it when this girl is sick.  It is always a little scary because she was not always able to really tell us how she felt or where it hurt.  Today, I realized that just wasn’t the case anymore.  Maybe my clue that this was coming should have been the first words she said to me this morning – “my throatmouth hurts – check my temperature”.  You think? I mean I did take her temperature and she did not have fever, she ate breakfast and was bubbly – I promise.  I’ve gotten so good at having to read her that sometimes I don’t listen.  Today was a milestone.  It’s the first time she really told me what was happening physically –and that’s HUGE.  Make sure you are always listening.  PS - There is nothing quite like having to administer medication or deliver medical treatment to a child who does not “understand the words that are coming outta my mouth” (Rush Hour) or reason like most.  Strangely the medicine she takes every day is no issue at all but you pull out some Advil or Zithromax and you better be R E A D Y! It will either be WWF Wrestlemania OR an absolute CRAZY negotiation that would rival the Geneva Conventions!  Administering medication is one thing, BUT delivering medical treatment is quite another.  After some “Stone Cold” negotiations (you picking up what I’m putting down?) THIS breathing treatment happened. I was there, I made it happen, me and 10 ‘off camera’ Dum Dum lollipops.  And, after it happened, I needed a paper bag, an aspirin, a shower and a beverage. Life.

#30facesofautism - Day 5

Day 5 – Let’s see…PACI  , mullet  , 10-15 word vocabulary  (typical is 50-75), BLURRY picture on your second birthday   . BLURRY.  Such a funny little word but such an absolute description of our life at the time.  I WATCHED but could not SEE.  I READ but could not LEARN.  I KNEW, but I could not KNOW.  For about a six month period – and I swear this is true – I do not have a picture of this child that is not blurry.  They are blurry because Baby Girl was in motion if her eyes were open, constant motion.  She paced and engaged in repetitive action and CLIMBED, oh my gracious the climbing.  She was fearless while I was FULL of fear.  I was 42, the age my mother was when she had me, and I was “dead dog” tired.  I felt ancient and wondered how in the world I would ever be able to keep up with her, how in the world my mother had ever survived my toddler years.  In retrospect, I am glad that time was a little blurry, I’m pretty sure it afforded me the time to figure out how to make it to year 3 and beyond.  I’m not gonna lie though, one nice clear picture would have been good. #30facesofautism #autismawareness

#30facesofautism - Day 4

Day 4 – Language is where it started for Baby Girl and where it stopped, or stalled at least.  I can clearly remember her gurgling that first word super early – “mama”.  I was thrilled and had no idea there may be trouble ahead until much later.  There is a way in which the brain should be wired as it acquires and understands language and something went amiss with her wiring around 18-24 months. She stopped adding words at the same rate, became a touch spicier and then, lo and behold, right around the time I started to notice that something was off Baby Girl’s hair went crazy.  I mean CRAZY.  It fell out, especially in the front, and then what was left became kinky curly.  The child had a mullet – it was all business up front and total party in the back.  I have no idea if the loss of her hair is related to the onset of the massive changes that followed but in my mind it significantly marks the earliest turn on our path. #30facesofautism #autismawareness

#30facesofautism - Day 3

Day 3 – Where there was Baby Girl there was a PACI – or two, or three.  She did not go anywhere or do anything without it until she went to preschool at 2 ½ years old.  Then it became a necessity when sleeping or car riding. I’m gonna lay it all out there and tell you that PACI was a huge part of life until she was way older than she should have been – say 5 ½.  Don’t judge. That child nearly inhaled PACI she sucked on it so hard when she would get in the car after a long day without it at school.  It was not just an attachment, it was an obsession and there are times where you simply have to pick your battles. Looking back I know it provided great comfort to her as she tried to navigate a world where so many things just didn’t make sense.  Being “developmentally delayed” impacts language, physical, emotional and cognitive abilities and the reasoning behind why it just wasn’t appropriate anymore was lost on her - until she was ready.  And, when she was ready that was it.  She put that PACI down and never picked it up again. #30facesofautism #autismawareness

#30facesofautism - Day 2

Day 2 – For the first 16 months this bouncing baby girl was hitting every milestone and beyond. Personality plus with the perfect amount of sweetness and spice. Those big, bright eyes and that contagious smile are still the best things about this precious face! #30facesofautism #autismawareness

#30facesofautism - Day 1

So April is Autism Awareness Month.  “Autism, or autism spectrum disorder, refers to a range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication, as well as by unique strengths and differences.” There.  There is your textbook definition.  It’s pretty accurate, just technical.  Some of you may be “aware” of my family’s journey and others may not.  It has not been easy but we have chosen to see it differently.  Our autistic child is a complete and total blessing and real awareness includes the ability to Accept, Understand and Love. For thirty days my intent is to share the many facets or “faces” of autistic that represent our journey and that it opens your heart to acceptance, understanding and LOVE. #30facesofautism #autismawareness