Tuesday, September 2, 2014

Lily's 11th Birthday!

Today we celebrated our sweet angel Lily's birthday with gentle fanfare.  Lily's easily overwhelmed by loud excitement and singing especially the famous "Happy Birthday" song so we toned it down, but kept our joy factor very high.  She did great.  We actually had our 2nd year in a row of a calm happy birthday girl loving every second...well except for the candle blowing, but in the end she gave it a try which is a first for her.

The theme was Barney with the gift giving.  For those who know Lily, no big surprise.  Amazon was my go to for her gifts since DVD's cost only $5 and used out of print books are cheaply found as well.  She loved everything and after opening everything immediately said "Upstairs!!" which translated means "Okay, Mommy please take all of my gifts up to my room RIGHT NOW!!" 

Below are some pictures and videos of her I wanted to share to give you a glimpse into her personality since most of you have never met Lily and she's pretty much a keep to herself shy little thing.  She's lit our world up for the past eleven years and we love her dearly.  

Her cake
that she actually ate some of and liked! :)

**Please note that I have a couple of teenagers giving commentary in the background so you may hear me reprimand them a bit during the video. #justkeepingitreal.** 

Then a little later she enjoyed her favorite thing for dinner - chicken and french fries!!


Thursday, August 21, 2014

First Day Of School

Whew!  Summer flew by, didn't it?  How is it almost September?!  I'm still busy doing my mama gig, but been MIA from this blog all summer from being a bit off kilter with the summer schedule and everyone home.  Lots of things happening around here, but I'm going to start off with a light post of pictures showing first day of school excitement (or lack thereof from the teenagers) to get me back in the swing of blogging. :)

 My 2 handsome seniors

I have to admit I took Kaelan's picture unbeknownst to him so shhhhh about the awesome smile he has, okay? ;)

My 2 joyful fourth graders

My oh so sweet first grader

and my precious preschooler

The youngest four are all at the same school this year which I LOVE!!  We are hoping and praying for a successful year full of learning and of course fun!  I'll update more in detail about each kiddo soon with an individual post about their summer happenings, new school year activities and what supports are in place for each this year.  All 6 have IEP's (individualized education plan) to help facilitate a effective and productive environment in school (hopefully), but we made and will still need to make a few decisions that affect or will affect a few of them with their schooling.  It's so hard as a parent not to second guess yourself trying to figure out what's best for each one of them based on their individual needs and personalities, let alone what they think they need or want to do especially the teenagers. 

Tuesday, June 24, 2014

Past Two Months Catch-Up

I'm soooo far behind with the goings on 'round here that I decided to do one long photographic post with most of all that's happened in the last 2 months for anyone who's not seen it already on Facebook.  If you've seen it, please bear with me since I know there is at least a few people who'd like to see these pictures who aren't on Facebook.  There will be additional posts about Dasha's Down syndrome overnight camp and our visit to see Great-grandpa Riley in the very near future.  :)

Easter (can't believe this was 2 months ago) was during Lily's recovery from her surgery, but some of us went out to eat for brunch with my family at a little place my dad loved.  It was a bit hard going in knowing he wasn't going to be there, but it was good to see my mom and a few siblings with their families.  Kids love the buffet line of brunch food too!

Leo's first Easter Egg hunt.  He's had zero interest before now and this was at our town's annual hunt.

Reagan went to Prom.  No pressure these days to have a date for which I think is a great idea and it was held at the Indianapolis Children's Museum.  He had a "awesome" time.

Dasha is once again doing Therapeutic riding this Spring/Summer and loving it!  Therapeutic riding is different from Hippotherapy.  She is actually learning how to ride a horse using reigns and stirrups.

Dasha celebrated her First Holy Communion in May.  Here she is practicing...she was soooo excited!!

She was beautiful in her borrowed white dress.

She was perfect during the entire Mass.


Down Syndrome Indiana had an opportunity that allowed families to spend a few hours at Sarah Fisher Hartman's team at the track in May and Dasha, Matt and Riley went down to Indy for the event.  The picture below is of Josef Newgarden, Dasha and Alex Tagliani.

Lily and Dasha had their year long Speciality animal projects to present for 3rd grade in May.  Dasha did Wild Dogs and Lily did Monkeys.

They were so smitten with Dasha, Sarah Hartman Fisher Racing invited her back for a pre-race party on Carb Day (Friday before the Indy 500).

Last day of school for the girls!
Lily excitedly walking to the bus.

Leo and Lily are doing Hippotherapy (horseback riding therapy) at the same time this summer.

Riley is back racing in his kart for the season.  Going with a Dale Earnhardt theme this year. 

Matt and I celebrated 23 years on May 31st.  ♥

The boys did their annual trip to King's Island and got their traditional crazy roller coaster pic

and the ever present frown picture of Kaelan with his brothers in front of the Eiffel Tower

Izzy danced in her very first recital and I officially became a "dance mom" 


Thursday, June 12, 2014

Lily's Boot Camp Summer '14

I've mentioned on more than one occasion how Lily tends to be lazy.  She has to be pushed, prodded and sternly spoken to if you want her to pretty much do anything besides playing on her iPad and eating McDonald's.  I always tell people to go watch the Helen Keller movie where they show how Hellen Keller behaves when she first meets Anne Sullivan to get an idea of how Lily reacts when being told to do something undesirable and then actually getting her to do it.

Her hip surgery and recovery really set her back several years with her walking ability.  Her legs at the moment are approximately 1" different in length.  Her new shoes have new inserts plus a higher lift on the outside of her right shoe to enhance walking and balance.  Here is a picture to show her platform heel:

Now that Lily is out of school, she only has a few therapies a week -Hippotherapy (horse) with a PT, Occupational Therapy and Speech.  Not necessarily by our choice though.  We were really disappointed to hear St. Vincent Rehab removed her from her traditional PT appointment for the summer before hearing whether insurance would cover another intensive therapy summer like last year.  Last summer, she had regular Physical Therapy, Occupational Therapy, Hippotherapy with a PT, Swim therapy with a PT (after Hippotherapy ended) and of course Speech therapy.  I'm not pointing fingers, but St. V's needs to get their act in gear with acquiring enough therapists to cover the need.  :/

So I've decided to do a little boot camp with Lily.  I'm forcing her to take a walk every evening after the other 3 little ones are in bed to get some fresh air, some endurance building and to push her limits.

I've come to the conclusion her autism is overtaking (or maybe surpassing?) her Down syndrome.  What I mean by that is autism affects her in more ways than Down syndrome lately.  Down syndrome has taken a back seat with maybe the exception of her physical abilities.  She wants to shut out everything that stresses her (which the list seems to be growing lately) and it really makes me sad.  I'm still a bit bitter to the circumstances regarding her hip because I feel like 2 years ago we lost a part of Lily's personality that we can't seem to regain.  We see glimmers of it, but where it once was the bigger part of her, it's now shrunken down hidden beneath the cloak of autism.

I'm hoping our little boot camp brings out those wonderful endorphins and gives her a boost of energy she is sorely lacking.  Tonight was our first night.  She fought and tugged and complained for about half the walk.

Then once she realized we were heading in the right direction to home, she perked up and sped up her gait.  Once we rounded the corner and she saw our house, a small smile appeared on her face.  It was a good first try.  I also enjoyed hearing her a bit out of breath knowing her heart rate was elevated and also knowing those endorphins had started to kick in because when she entered the house she was relaxed, happy and (big surprise) ready to grab her iPad.   #babysteps


Thursday, June 5, 2014

The Poopy Button

Warning:  This post involves poo talk, but I felt others may be in the same boat as we were so I felt it was my duty to share this post with the hope it brings sanity (& cleanliness) back to your decorated in crap (literally) house.

The title alone should make you shudder....but oh what a brilliant idea.

We've had our issues with Lily and potty training.

Confession time:  Potty training or lack thereof is probably the most disliked parts of parenting for me.

Two were fairly easy to train at least in comparison to their siblings and Dasha arrived potty trained (Thank you God!).  The rest.....well suffice to say were low achievers at art of using a toilet.

Autism and/or Down syndrome can really affect the way a child feels about bodily functions. They either go hog wild and embrace, touch, play, throw, smear... you get the idea...with what we find offensive in every single aspect.  Or you have the ones who are oblivious to it all and wouldn't care if they lived in diapers, Pull-ups or underwear for the rest of their life just as long as someone else deals with the mess.  They really just don't give a crap.  We, the parents or the caretakers, go off the deep end losing our minds trying break the disgusting cycle of the aforementioned while we do the dirty work for the latter.

Lily has been "pee-trained" for awhile now.  It took a Fisher Price musical potty for it to click in her mind what peeing was all about.  She needed to figure out the connection of the sensation of full bladder and needing to go to the potty and pee.  The problem was she really didn't care and it took months with a lot of stern voices and then elated cheering to see any results. Candy, cookies, stickers or other incentives didn't work with Lily.

Once she became pee-trained, she then started using her nighttime Goodnites as her poop diaper.  We couldn't get her to achieve a BM in the toilet so she had no concrete visual experience to go off of for a long while until surprise one day she did it.  I'm pretty sure I announced it on Facebook and most likely everyone within a mile radius heard my shout of joy that first time it happened.  Sadly afterwards, it was hit or miss on using the toilet since she still favored using her Goodnite diaper at night for poop time.

We also started having poop accidents or Shitastrophes as we've been known to call them. These started after she got her spica cast off 2 years ago after dislocating her hip and needing major hip surgery.  It's like everything she'd learned about bathroom etiquette (which wasn't much :/) before being stuck in that full body spica cast bedridden for 4 freaking months was completely forgotten and we were back to square one.  It was awful.  To help you understand a little better I need to mention that Lily doesn't call us ever for anything.  I've never heard her say "Mommy, come here" or "Mommy help me" so obviously she would never call us to say "Hey, I've pooped!"

There were multiple incidents of butt-scooting down the carpeted stairs in a leaking diaper full of poo or an even better version was her going poo on the potty and then butt-scooting down the stairs leaving a skid mark the length of our staircase to share the good news of her going "poopy...potty" with a big smile on her face.  Sometimes, we'd find her sitting on one of our leather couches bare cheeked playing on her iPad oblivious to the stench and nastiness penetrating our furniture.  Other times, she'd poop on the potty, get off without wiping and walk in her room to put on a new pair of undies without a word.  She'd then go through 4 or 5 pairs of undies because they kept getting dirty.  She's also famous for dropping her drawers, going poop on the potty and climbing back in bed sans panties and then wait until I find her with poo streaks on her sheets to say "poopy?" with a grin the size of Texas so proud was she.

To say I handled these Shitastrophes with grace, serenity and calm would be a big fat lie.  Lily now holds her ears when one of these events happens because I guess I've been a bit loud when facing an enormous clean-up.  We've actually replaced her bedroom and the upstairs hall's carpeting with hardwoods to ease the clean-up.

Then came my salvation.  The Poopy Button (that's what we're calling it) was suggested by one of Leo's Developmental teachers at his preschool who comes to our house to work with Lily, Leo and Dasha on academics to further enhance their learning.  I was ranting about another incident regarding poop and one of them said I should get one of those wireless door bells and put the chime down on the first floor and the button next the toilet.  I thought it sounded kinda crazy and doubted Lily would understand what we wanted her to do.

We purchased one mid priced remote doorbell ($15-20?) at Lowe's or Home Depot (I forget which place) and installed it.  Matt made a cute little sign via The Print Shop with a picture of her beloved Barney on it to place next to the button.  We then showed it to her, demonstrated how it worked and waited for her to poop one night on the toilet.  Once she did, we rang the doorbell which you can hear from where she's sitting on the potty and we can hear on the first floor and got really excited about the entire thing.  Praised her for pushing the button and reiterated over and over how we wanted her to push the button every time she goes poopy. We were very skeptical that she even understood our expectations.

Well lo and behold, the next night, I heard the doorbell chime (which is set to a different tone than our front doorbell) and ran upstairs.  There was Lily proud and happy sitting on the toilet waiting for me.  As soon as she saw me she announced "Poopy!"  To say I was ecstatic would surely be an understatement and since that night she's used the poopy button multiple times. YAY Lily!!!!

Our next goal will be mastering wiping, but for now I won't gross you out anymore than I've already done with this post. :)



Tuesday, May 20, 2014

Ten Tips On Interacting With A Child Or Teenager With Autism

Here are some suggestions that may (or may not) help you when interacting with a child or teenager on the autism spectrum.  I'm basing this on my four children on the spectrum and I am in no way an expert on every single child with autism so take it for what it's worth.  :)

1. Skip the sarcasm until they are at least over the age of 10. They do not get it nor care for it. They are very literal beings.  Also a good thing to remember is that looking at faces especially making eye contact is not high on their list of things to do so they miss your smirk or smile.  Thus, teasing or joking may go over like a lead balloon when they are younger as well.  Often though, my teenagers with autism take a joke too far and either tick someone off or offend them.  They are then completely shocked when they get into trouble and think everyone is being unfair and/or overreacting.  To them it was just a funny joke and everyone just needs to "calm down."

2. Don't ask too many questions. My teenagers on the spectrum hate to be quizzed and often consider your questions to be inane.  Pumping them for lots of information or details about their daily life is NOT a good way to have a conversation with them and they often will feel like they are being interrogated.  In this case, less is more.  On the other hand, if you ask about an obsession you know they have....well, then they might be willing to talk at great length about that very subject. ;)

For teenagers, questions like:  "How's school?", "What did you do today?", "How are your grades?", "Who is your favorite teacher or subject?" and "What are your friends names?" always fall flat with my teenagers.  My boys hate these questions and Reagan will flat out ignore you if you ask them or tell you to stop talking to him.  We are working on this, but remember most (if not all) of these kids have NO FILTER and often say whatever they think. I'm fairly excited and grateful if they actually say hello without any prompting from us to people we run in to out in public.  For my kids, it just doesn't come naturally for them to be greeters and conversationalists.

Leo (the 5 yr old) and Lily (the 10 yr old who also has Down syndrome) can't answer questions well at all and their speech therapists work eternally on answering Who, What, Where, When, Why and How questions.  Even getting them to speak in full sentences is a huge issue so barraging them with questions will usually get you a blank look or a complete lack of response while they become engrossed with their iPad again.  Lily and Leo are still working on answering fairly simple questions like "What's your name?", "How old are you?",  and "Who am I?"  We also can ask them questions like "Do you want this or that?" filling in two options. Interestingly, kids on the autism spectrum often say the last thing they hear when given a choice of two or three items.  Leo has improved a lot with this because I often try to trick him into thinking about what I'm asking by saying his favorite thing first.  For example:  He loves apple juice so I will ask him if he wants apple juice or milk.  Another example would be "Do you want an apple or a banana?" This way he is forced to focus on the question because he has a strong motivation to pick what he really wants to eat.    

3. Never try to reason or rationalize with someone with autism on any subject unless you have solid evidence to prove your point.  In other words, be ready to reference encyclopedias, the constitution, various laws or a dictionary.  These kids are very black and white thinkers.  They tend to take most things literally, especially in the early years.

4. Never say "Because I said so!" or "I'm the boss" or "You're just a kid" to them. This will not go over well and usually doesn't work. They see themselves as equals to adults and do not see a hierarchy.  It's better to once again use facts, rules and laws as your back up to why things have to be a certain way.

5. Don't touch, hug or kiss someone on the autism spectrum until you know how well they might react to physical touch.  Some love it, but many abhor it.  It's a sensory thing.  Also if you see them doing something like rocking, tapping, banging, picking, covering their ears or any other thing you think is weird, strange or gross, just ignore it and for the love of God stop staring at them. They are coping with a world that can be very loud and overwhelming to process, and the last thing they are thinking about is whether or not it's bothering you.  Let their parents, therapists or teachers help them learn appropriate behavior or coping mechanisms. 

On that note, a personal request, if you find yourself at my house in the future please ignore (and if need be avert your eyes from) the pants-free munchkins parading around in their skivvies for all to see.  It's a low concern at the moment and thankfully for the most part they keep their pants on out in public. ;)

6. Don't assume a child on the spectrum is hard of hearing or ill-behaved if they don't respond to your questions, avoid eye contact or turn around walk away without a word.  Social interaction and eye contact can be very very difficult for many of them and even physically painful for some.  Be patient for a response from others, because some have processing issues and it may take a few moments for them to auditorily or cognitively process what you said before they are able to respond.  I call it the 2 minute delay.

7. Don't assume everyone on the autism spectrum is like a little "Rainman."  There's the saying "If you've met one person with autism, you've met one person with autism."  They may have similarities, but their differences can be numerous, especially their ability to socially interact, their interests and their level of speech.

8. Okay, this is for all the loving, kind, well-meaning relatives and friends who are just hoping to make a connection with my kids.  I'm grateful you try.  Really I truly am.  But to save yourself the irritation, the hurt feelings or the urge to smack one of my kids upside the head, please stop asking my kids about their talents, obsessions or even trying to get them to "perform" their latest trick.  It works in the early years, but not so much once they reach the age of 6 or 7.  After that, they just get annoyed and rude.  Often times they act like they haven't a clue as to what you are talking about and have forgotten every detail of the globe, how to read or even how to add.  Personally, I think it's their particular devious sense of humor. :)

9. Be patient with them.  I know they can be annoying, loud and disrespectful at times.  I know they often do and say bizarre things.  I know they can throw an epic temper tantrum screaming in decibels that should be outlawed just because their iPad died, they didn't get a 2nd cookie or you gave them milk instead of apple juice.  Also adding in teenage hormones to the mix of autistic behaviors can add a whole new level of over-reaction fit throwing and yelling.  But please be patient with them.  They aren't spoiled brats, purposely disobedient nor defiant.  They are just learning how to survive and cope in a world that confuses and overwhelms them.  A world that often makes no sense with people persistently trying to teach and force them to do things that are challenging, bewildering or downright distressing (probably a combination of all three).

10. Accept them autism and all.  They don't feel like they are defective, broken, impolite, hyper, gross, weird, inappropriate or need to be cured.  I want them to embrace their autism instead of hating it.  Maybe for once try to enter their world instead of always trying to force them into our world.  If they are spinning in a circle, you could spin in a circle to experience what they may be feeling.  If they are dancing and flapping, why not dance and flap with them.  If they are quietly reading their phone, a book or even playing on an iPad, why not just sit close by and read your phone or a magazine.  Just be near....be present to them without high expectations. They'll know you're there.  You may be very surprised at the interaction, the eye contact and the joy expressed from the child who is happy with your effort.

Addendum: Okay I thought of an 11th tip this morning thanks to the phone ringing. The best way to communicate with a teenager with autism on a phone is not to call them, but to TEXT them.  Umm, now that I think about it, the best way to communicate with ANY teenager is to text them, but when you have a teenager with autism, texting may actually help them communicate with you more.  You may even be surprised at the exchange you have via text. I've had some really nice and productive conversations with Reagan texting that wouldn't have gone over as well in person.  Reading someones body language and facial expressions can be very difficult when you have autism and when you take that factor out, they seem to become more relaxed and more willing to respond.  Also you don't have to be chatty texting which works well since they dislike chatty.  The only downside is sometimes they once again lose their filter and text inappropriate comments that they and their peers may find hilarious, but you the parent or adult not so much.  

I also could call multiple times on their cell phone or the home phone and it will go to voicemail almost every time.  In the rare instance they actually answer the phone, be prepared for almost zero phone skills (no matter how much we've coached and worked on them), stilted speech and a hint of irritation in their tone when you (if you're lucky) hear them say hi. Sometimes you may just hear breathing as they wait for you to talk.      

**So there you go, 10 11 tips to help you interact with my offspring and others like them on the autism spectrum.  I just want to clarify that autism is a vast and complicated diagnosis. Obviously there are children on the spectrum that are nonverbal or completely different from my sons and daughter.  Since my teenage sons are completely verbal and the younger two are verbal to some extent, my tips are geared more to the kiddos with autism who have acquired speech.


Monday, May 19, 2014

My Heart In Pictures

I was contacted by one of our doctor's offices from Peyton Manning Children's Hospital at St. Vincent asking us if we'd be interested in doing a photo shoot with a local photographer, Rachel Moore Photography.  Peyton Manning Children's Hospital at St. Vincent and Rachel Moore partnered up to raise autism awareness and funds to support autism research, treatment and rehab.  25% of the proceeds from any photo shoot booked with Rachel Moore Photography (website) will be given to Peyton Manning Children's Hospital at St. Vincent for autism. 

I agreed and we met at Holcomb Gardens located on the Butler University campus for these wonderful shots.  We are decked out in our white Peyton Manning Children's Hospital t-shirts to show our support.

Once Rachel heard we had two girls with Down syndrome, she wanted to take their picture to do a fundraising/raise awareness campaign for Down syndrome in the fall as well so naturally they wore their Keep Calm It's Only An Extra Chromosome t-shirts. :)