Wednesday, April 22, 2015

April's Been a Month of Celebrations and Fun

I decided to write this post with our most recent event and working backwards to April 1st to be different.  Be prepared for lots of pictures. :)

Yesterday, Dasha went to the orthodontist for a check up.  A few years ago she wore a non-removable palate expander for 9 months and we now are just monitoring until the time for hardware is needed.  He said her mouth and jaw looked great and to come back in 6 months.  Matt then took her to Peyton Manning Children's Hospital to have blood work done to check her thyroid level since she is being treated for Hypothyroidism (this happens every 6 months).  I just got called by the nurse they are upping her Levothyroxine (generic for Synthroid) to 50 mg from 44 mg.  Not uncommon to have a need to adjust meds as puberty (Lord help me!) changes occur.  

Dasha wasn't overly happy with the blood draw so Matt let her pick a treat for being so good.  After much discussion, she decided that a chocolate cupcake with chocolate icing and sprinkles would make it all better.  

Earlier in the month, Dasha was asked if she wanted to dance with the Colts Cheerleaders again for the Colts Cheerleader Showcase held at the Circle Theatre Friday night.  It was the final competition round for the cheerleaders before the squad was picked for next year's season.  She got to reunite with her favorite Colts Cheerleader, Meagan last Wednesday to practice her dance (it was the same routine from December, just to different music).  After a enthusiastic hug with Meagan, they got busy practicing their dance and then moved on to do another Soul Train performance...Dasha's favorite part by far.


Then last Friday night, Dasha, Izzy and I headed downtown to the Hilbert Circle Theatre (which by the way is beautiful) on Monument Circle in Indianapolis and watched the talented women compete for the coveted 28 spots.  There were 52 trying out, so it was fierce competition.  It reminded me a bit of a Miss America contest with lots of dancing added in.  I think by the end of the evening both girls desired to be Colts Cheerleaders.  Right before the final results were given, Dasha went up on stage with all the other performers from Down Syndrome Indiana and Fierce Allstars, who either have Down syndrome or other disabilities, and danced their hearts out.  They even got to do a Soul Train. For those who don't know what that means, it's where you line up into two parallel lines and then partners come down the center dancing any way they want.  Here's a clip of Dasha and Meagan doing their turn:


Dasha after the show...she was exhausted.

We celebrated Easter and were surprised when Lily and Leo participated with the egg coloring. Lily did one and was done.  Leo, on the other hand, colored multiple eggs.  He absolutely loves crafts so this was right up his ally.  I think he, Dasha and Izzy would have colored several dozens eggs if we'd had them.  

Easter morning 7 baskets filled with candy sat waiting to spike everyone's blood sugar.  Then Leo, Dasha and Izzy went egg hunting in the front yard.  This was Leo's 2nd egg hunt ever and he did pretty well participating.  He refused to hold his basket so Matt had to walk around carrying his Royal Highness's basket. ;)

We then had brunch with my mom, a few of my siblings and their families.

We attempted Easter Mass, but I spent most of the Mass out in the Narthex with Leo.  He's starting to find his voice (Yay!), but has a hard time understanding whispers vs. shouts.  After multiple words, sounds and gibberish were expressed from Leo's sweet mouth, I shushed him a few times and that triggered dramatic exaggerated shushes from him to me (finger on his lips to make his point as well). Being that we were in the 3rd row, I quickly exited even though I was quite proud of his brazen verbalness (not a word, but whatever, the kid's not nonverbal anymore). 

We had a big double birthday celebration for the birthday girls a few days before Easter!!  Moogie (aka my mom) turned 75 and Dasha turned 12 on April 3rd.  #twins

Can you tell Dasha is a such a ham?

Grandma & Grandpa came over too!

Mom and me. #love

Two days prior to Dasha's birthday, we celebrated our April Fools boy's 6th birthday.  Leo was enamored with his birthday balloon.  Sadly, it lasted less than a day due to Leo's rowdy love fest he doled out all day long to his poor balloon.  Gentle is not in Leo's vocabulary when it comes to balloons.

Birthday cake was a hit (no surprise there)!

Leo blew out his candles by himself for the first time.  I was a bit worried about singed hair, but he did great!

His favorite gift.  $8 at Meijer on a whim.

A few random cute pictures from the month.  

Izzy at the doctor for her 6 month check up about her ADHD/anxiety medication.  It went well.

Leo playing a drum with his left hand and the piano with his right.  I said he was following in his daddy's footsteps as a one man band. :)

Goofball Dasha zooming around with her brother's helmet on made us all laugh!

Speaking of her brother, Riley just purchased a new (slightly used) Go Kart.  His first race was on April 12th and he was happy with his results considering they got the Kart ready to go just minutes before the race began.


Monday, March 30, 2015

I Was Meant To Be An Autism Mom

As my 5 year old son and I walked out of gymnastics last night where he takes a private 1/2 hr class, it was cold, damp and a bit windy in the looming dusk.  Freezing, I excitedly said "Let's run to the car Leo!" and took off gripping his hand tightly.  Beside me, I heard this stilted little voice say, "Let's" "Fast."  I glanced down in surprise to see a slight smile gracing Leo's lips as his messy mop of wavy hair is blown back to reveal his pretty features on his sweet face.  (Almost too pretty for a boy, we often joke.)  And so we ran fast to the car, holding hands, laughing all the way.  

I'll cherish that moment because while it's a simple story to share, the significance of hearing Leo respond to me showing he comprehended what I asked and then followed through with the suggestion is certainly wonderful. That he added the word "fast" (twice!) is HUGE in the communication department!

It's moments like that where I'm reminded I was meant for this hectic, sometimes overwhelming but highly rewarding life.  I was meant to be an autism mom.  You may even be shocked to hear, but I actually revel in it these days. Autism doesn't frighten me anymore. Autism doesn't make me sad.  I'm done grieving.  In all honesty, when you stop and think about it, autism is pretty darn fascinating.  Of course, there are hard and frustrating moments, but the joyous moments are greater.  There are still meltdowns, but happy and content are more the norm.  I've gotten used to their exuberant noise and embrace it.  Silence is over-rated anyway.  Meeting milestones are cause for celebration and delays make us work all the harder.  We've become a well-oiled team in our house and there's not a lot of guess work anymore with what works and what doesn't with our four kids who have autism.   

It wasn't always like that for me.  When my 18 year old twin boys were diagnosed all those years ago with autism, I was devastated, angry...and a bit bitter.  I didn't want to be an autism mom.  That was not what I signed up to deal with at all.  I wanted someone or something to blame for stealing my boys' smiles, speech and outgoing personality.  But after getting over the initial blow, I jumped in with both feet, determined we were going to help them achieve their highest potential.  Of course, back then the only things I knew about autism was from a few internet searches and from the movie Rain Man, and that was definitely not a good model of autism to predict the future capabilities of either boy.

I've earned many titles over the years as I took on many roles for my kids.  I became a strong advocate, a novice therapist; learning tricks of the trades of speech, occupational, developmental and physical therapies, a feeding specialist, a nurse, a negotiator, an arbitrator, a teacher and a protector from the bullies.  I learned to juggle our time and coordinate a crazy busy schedule packed with developmental preschools, regular schools and therapies.  My kids work challenging full time jobs learning how to talk, socialize, process and regulate their senses and coexist in a oftentimes confusing world. With the help of resource and special education teachers, we became proficient in balancing academics, homework load and down time as the twins moved through each grade at school.  

I'd say I'm kinda like a wedding planner coordinating and assisting all aspects of a big grand wedding.

I also fostered interests, collections and obsessions because whatever brought them joy brought me joy.  I've bought books, boardgames, fidget toys that were stretchy of every color or texture, Thomas The Tank Engine stuff, iPads, Barney galore, coins, puzzles, computer and video games, Hot Wheels, and hoards of stuffed animals including a big quite real looking hairy tarantula puppet that actually gives me chills (ick).

I'm sure I made some mistakes over the years and possibly missed or ignored some ground breaking therapies to try, but as I look at my 18 year old twin sons, who have autism, I'm in awe.  To have come so far from their premature birth, major developmental delays and autism diagnosis to graduating from high school this June and heading to college in the fall, I know we did something right.  My husband and I are so proud of their hard earned accomplishments. We rocked their autism as a team and I believe they'll continue to blow statistics out of the water with their successes as time goes by.

We are also forging forward with a new version of autism or as we call it autism enhanced with Down syndrome with our daughter, Lily.  While suspicious she had autistic traits (Down syndrome and autism can both have sensory processing and communication issues), we didn't push for a formal dual diagnosis until recently.  At 11 years old, we are using our autism knowledge to tweak her therapies and her needs because I've noticed with her dual diagnosis that Down syndrome is currently taking a back seat to the autism.  I'm grateful for my experience with the twins because that experience has guided me in supporting Lily more effectively as well as helped us in understanding some of her behaviors better.  Since she's not able to communicate very well or learn in the same way as the twins, it's nice to have that prior knowledge as we map out a plan to meet her highest needs right now so she too can achieve her level of success with her level of abilities in every aspect of her life.  We're simply gonna dazzle her dual diagnoses with everything we've got in our autism toolbox.   

Finally, we're getting a fourth chance to rock autism all over again with Leo, who is our youngest.  In some ways he's similar to his older brothers, but in other ways he's completely different, so comparing isn't always an option or a wise thing to do.  There's also newer therapies and different techniques to try. Treatments and therapies are always changing or evolving similarly to the way individuals with autism change and evolve, but for us the stakes are the same.  We're going to help Leo achieve his greatest potential whatever that may be and enjoy watching him bloom.

Bottom line:  I love being an autism mom and frankly, I know I'm good at it.


Saturday, March 21, 2015

World Down Syndrome Day 3-21-15

Today on World Down Syndrome Day, we celebrate Dasha and Lily, who have a 3rd copy of their 21st chromosome.  We celebrate their sweetness and their beauty.  We celebrate their charm and their sassiness.  We celebrate their hard work and numerous achievements.  We celebrate their generous and loving nature.  We celebrate their strength and determination. We celebrate their beautiful wide open smiles, and their delightful moon eyes.  We celebrate their exuberant hugs and gentle touch.  We celebrate their courage and their grace.  We celebrate the joy they bring us every single day.  We are blessed and we are grateful.  


Thursday, March 19, 2015

Hygiene 101 Is A Required Course In My House

I tried to have those cute little boy cuts with the twins and Riley when they were little.  Often making long across town jaunts to the closest Cookie Cutters multiple times for several years. Fun times they were not.  It was a unique form of torture for all involved.  

I'd been previously spoiled on how easy our oldest Riley handled a haircut.  He sat in a silly chair, spaced out watching a video or playing a video game and his hair was quickly trimmed. Afterwards his reward would be a sucker and balloon with a dangling cookie cutter.  Easy peasy.  Then the twins came along hyper enhanced with autism and sensory issues galore and we began our decent into bad hair days.  

Reagan particularly (like our youngest Leo) had an aversion to being contained for any length of time even if there was a promise of a sucker and you were placed (more like pinned in Reagan's case) into a miniature Batmobile.  He detested having his hair misted with their little spray bottle much less tolerating all the combing and the cutting.  He flinched every time his head was touched, while dodging and ducking away from the clipping scissors and could not sit still to save his life, all the while playing Mario Bros on the provided Nintendo 64.  He's quite the multitasker.  By the time he was 4 or maybe 5 years old, he was fairly used to (as in no longer cried or wailed, but still good at dodging and ducking) having his hair cut even if the end result involved crooked bangs every. single. time. which I often repaired once home. 

Kaelan was somewhat easier because he was more obsessed with playing the offered video games, but he wasn't a walk in the park either for the hair stylist and usually complained loudly while guiding Mario through Mario's World.  

Circa 2001.  Haircuts ala Cookie Cutters

Fast forward a few years and it wasn't so much getting the haircuts that was the problem anymore.  The bigger issue was making sure the twins were actually washing their hair and bodies while in the shower because once I allowed them their independence to shower themselves, their overall appearance took a nosedive.  

Cleanliness was a hard concept for my kids on the spectrum to recognize or embrace especially as puberty changes occurred.  It seems to me preteens and teenagers on the spectrum overall are particularly stubborn about recognizing this.  Just walk into an autism high school or any old middle school or high school for that matter and observe the greasy haired and greasy faced (oftentimes smelly) kids.  Typical kids struggle enough with this, but from my experience kids with autism, Down syndrome, etc. have an even greater issue keeping things clean. Sensory sensitivities or defensiveness, complete lack of awareness or flat out refusal that often doesn't seem to improve or is greatly delayed with maturity/age.  Mine had a much harder time understanding the need to actually wash every crevice and strand of hair and to finish with a thorough RINSE especially their hair.  Mine have benefitted from a shower protocol schedule hanging in the shower stall for awhile as a gentle reminder because I, for one, have found just standing in the shower, dancing in the shower, sitting in the shower while filling shampoo bottles or rubbing a brand new bar of soap between your hands forming awesome clusters of bubbles just doesn't cut it.

Side-note:  If you have a bubble maker, try buying a shampoo/soap dispenser to hang on the wall from Bed Bath & Beyond or Amazon.  It greatly deters the playful wasting of bubbly products.

On top of the showering predicament, my kids on the autism spectrum or the one's with Down syndrome don't seem to recognize the importance or for some it's a complete lack of awareness of the necessity of wearing deodorant, shaving, using Q Tips or brushing and flossing their teeth.  It's all very inconvenient and I have to constantly remind (nag) them to do it.  Even putting on clean underwear or wearing a bra has to be talked about at great length with stubborn or unconcerned minds not being changed to the significance of doing the aforementioned.  My guess is it all ties into social expectation and cues that most of us recognize, but for some of my kid's, it doesn't bother them so why does it bother everyone else?

Another side-note:  Electric razors are an easy go to for shaving (not a fan of the majority of my kids holding and using a razor with 5 blades in it thankyouverymuch).  We are still addressing at times the perceived attractiveness or "coolness" of the multiple randomly missed/ignored long curly facial hairs, "beards" or sparsely grown goatees the twins seem to sport more often than not.  I highly wonder if the twins even know the reason behind "No Shave November" and I seriously feel giving up shaving for Lent is a stretch of a sacrifice or a hardship for either of them.  :/

So I've buzzed the twins' hair for years not because we love super short hair (Well, my oldest son and husband do), but because I got so tired of constantly harping at them to wash their hair, or to make sure they actually rinsed all of the shampoo out or to not just wash the top of their head (Umm, sides and back are important too guys!).  I also reminded the twins if they ever wanted a girlfriend/wife they should take better care of their appearance because no one wants to be with someone who looks or smells gross.  A little harsh?  To some maybe, but I've found sometimes the "no filter" aspect of autism can go both ways.  Nowadays I'm often surprised at the handsome pleasantly smelling young men I have in my life so there is hope for anyone else struggling with a preteen or teenager on the spectrum.

Lily and Dasha minus 5-6" of hair.

For now, I'm really struggling with relinquishing the reins so to speak to Dasha, who has Down syndrome, to wash her own hair.  With hair almost to her waist, her ability has been hindered to get it squeaky clean let alone snarl free.  I just recently sheared off 5-6" to help her achieve the independence she desires and needs.  A shower protocol sheet needs to be laminated and hung next.  While Lily, with her dual diagnosis of Down syndrome and autism, may never graduate to self sufficiency, I'm going to strive to make sure she gains independence to the highest level possible for her.  Dasha is a bit easier with her cleanliness training because she loves to model typical behavior and can be coached on the steps needed, but I don't see Lily ever caring or understanding the need for basic hygiene, but that doesn't mean she can't learn expected behavior and appropriate life skills to her level of cognition.  She also may never be great at washing her own hair and brushing it because her lower tone makes the task much harder for her to perform.  As for the ones in my life that are physically able and cognitively capable the expectations needs to be reiterated repeatedly and frequently of the importance their daily hygiene and cleanliness is in the outside world.  

Love this sweet boy

Finally, the caboose of the family, Leo, still needs full support in the shower/bath even at almost 6 years old, but hopefully within a few years he'll be able to master his bathing skills like his brothers.  Autism again has been a big part of the hinderance for Leo gaining his independence.  Being unable to follow directions, being nonverbal and also having a fear of water for quite awhile made it difficult to bath him in general.  Now he's a pro-bather in the bathtub, but showering is a no go so far.  I'm trying to break him of his dislike of being sprayed for now.  He's also never been to a Cookie Cutters and I compare cutting Leo's hair to harnessing an octopus while holding scissors.  I still waver on when I'll do his first buzz cut.  I originally grew it out to hide his strawberry birthmark on his temple, but it's messy, curly length suits him so for now I leave it long.  

I never thought I'd become a self proclaimed hair stylist for my children, but alas I now cut everyone's hair, but mine.  It may not be perfect, but is works and saves us a fortune.  We've got enough cookie cutters anyway.