Monday, April 30, 2018

#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



Thursday, April 26, 2018

#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



Wednesday, April 25, 2018

#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



Tuesday, April 24, 2018

#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