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Sensory Overload June 14, 2017

Filed under: Uncategorized — ryangrace11q @ 11:30 pm

Like most kids with special needs, Ryan struggles with sensory overload.  She has never actually been diagnosed with Sensory Processing Disorder, but we don’t need another doctor to tell us what we already know.  It’s something we have been working on her entire life and will continue to as her needs change.

Ryan’s biggest triggers are anything being done to her hands and feet, and anything related to her head.  For us, this means that any type of self-care can lead to complete meltdowns.  Brushing teeth, combing hair, and trimming fingernails and toenails, are just some examples of what can set her off daily.  Needless to say getting blood pressure and ears checked at the doctor, haircuts, and trying on shoes at a store are another story… a horror story.  And I’m not even going to get into the IV for her infusions.

As a baby, Ryan hated getting her hands wet in the tub and she would gag frequently.  We slowly started giving her input by placing different textured things in her hands (she would sit there and groan as if in pain) and let her chew on various tubes and spoons to desensitize her mouth.  We even used vibrating animals called “Vibe Critters” for this purpose.  You can imagine the jokes in our house!

Yes. This is a real product for sensory issues.

As time goes on, even though her ability to cope gets better, her list of inputs she can’t handle becomes worse.  Although she doesn’t vomit during meltdowns, loud noises and crowded places get to her when they didn’t before.  And just recently she has started to spin a lot and swing really high on the play-set.  She is seeking more of the input she likes and acting out more at the input she can’t handle.  We have to trim fingernails and toenails when she sleeps and some days she goes without getting her teeth brushed.  Haircuts are scheduled at times when no other clients will be in the salon because I don’t want them to have to endure Ryan’s crying.

As a part of her OT therapy, Ryan has started a new “Sensory Diet”.

Sensory components are:

  1. Deep touch “tactile”
  2. Heavy work “proprioception”
  3. Movement “vestibular”

Since Ryan seeks movement, we provide her with deep touch and heavy work.  For deep touch we give her hand hugs all over her body, squeeze her head, and smoosh her with a bean bag/yoga ball.  She loves this!  For heavy work, we try to have her push on the wall or floor or push a ball or other heavy object.  She doesn’t love this.  We haven’t seen much improvement yet, but we were told that it takes some time.  It also takes consistency and to be honest, we don’t do it as much as we should… which is every 2 hours!

On the plus side… in seeking input that she likes, Ryan give the most amazing bear hugs you could ever want.  But if you’re lucky enough to get one just be careful!  She doesn’t know her own strength and might choke you and then you’ll be the one to gag!

 

Ryan won’t shut up November 13, 2016

Filed under: Uncategorized — ryangrace11q @ 1:57 pm

Yeah, you read that title correctly.  Ryan. will. not. shut. up.

This post is a long time coming and I’m as surprised as you are that I’m writing it.

Upon receiving her diagnosis, we were never given a guarantee that Ryan would talk.  In fact, in our dream list of 4 things that Ryan would do in her life (which we came up with when she was teeny tiny), talking wasn’t one of them.  Our dream was that she would be able to see, to walk, to feed herself , and to use the potty.  Talking wasn’t even on the list because we knew that with the technology available today she’d be able to communicate in some way.  Our list has since morphed as she showed us it was possible that she could, and would, talk!

It all started with mama.  The first and only word for a long, long time was mama.  I’d like to think it was all about me but she said mama for everything.  She could only get the M sound out for a long time.  H and P eventually followed and we heard words like home, happy, and hippo. But the progress with her speech was very slow and as her vowel sounds became more clear (she was able to differentiate between mama – for Liz – and mommy – for Katie) more consonants wouldn’t come.

So we got her a speech device.  We used it as much as we could to practice words and sounds but it wasn’t something that was easy for us to use in our daily lives… we kind of sucked at it.  We practiced with it at speech therapy but at home… not so much.

Then she had her neck surgery.  https://ryangrace11q.wordpress.com/2015/09/17/ryans-surgery/  After that, she moved into a more inclusive classroom with typical peers, and her speech improved.  We were told that speech usually follows walking in terms of milestones and we definitely saw an improvement.  She used more words… but all with the M, H and P sounds.  At that point we realized that the speech device wasn’t a priority.  Ryan was able to express her needs enough that we (and she) preferred verbal communication over technological.  Yet the consonants just wouldn’t come.

In January we decided to try a new form of therapy – PROMPT.   https://ryangrace11q.wordpress.com/2016/01/  We had high hopes but after three sessions we decided to go back to traditional therapy for numerous reasons.  One of those reasons was that Ryan just absolutely loves her speech therapist!  This is one of my favorite videos of Ryan having a blast at therapy.

I’m not sure what the actual turning point was for Ryan: her surgery, being around verbal peers at school, or her love of her speech therapist, but before we could blink an eye she had an absolute explosion of speech.  Her use of consonants, although still a struggle, are improving.  And her vocabulary is now off the charts!  She not only mimics everything but she will sing along to songs in the car that we didn’t even realize she knew and she is using 3 to 4 word phrases all the time!  Just this week she asked for peanuts by saying “I peanuts please” and when she got into the tub said “Come on soap, let’s bubble”!  I could list all the words and phrases she can say, but instead, I’ll just you leave you with some cute videos…

 

We crushed it! September 4, 2016

Filed under: Uncategorized — ryangrace11q @ 1:09 pm

Since Labor Day weekend marks the unofficial end of summer and since I haven’t posted in so long, I thought I would just post a ton of pictures from the last few months.  We had a great summer full of trips to Hilton Head (twice), Cleveland (twice), and various other locations for fun in the sun!  We calculated that we drove around 4,000 miles this summer and as we tackled each adventure Katie liked to say that “We’re crushing this summer”!  Here is our summer in pictures and video:

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Lots of ice cream was eaten!

 

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Charlie went to Star Wars night at the Reds game!

 

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Hanging around summit park in Blue Ash - super cool place!

Hanging around Summit Park in Blue Ash – super cool place!

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Celebrating with Kendall!

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Blueberry picken’

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First sleepover with Charlie’s BFF, Brielle!

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Scoping out future pets…

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Geocaching with Cousin Jack!

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Gaga and her girls on the 4th!

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My parents’ dog, Lola. Poor thing was practically smooshed by Ryan every second of the day.

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Lots of pool time with friends!

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A quick visit with Muncle Mike!

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Cousin Chloe!!!!!!

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My brother Drew’s 50th bday party!

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Ryan’s first fish!!!! (At my parents’ house)

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2nd sleepover with Brielle and Brooklyn!!! My big girl is so big.

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Mommy helped coach Charlie’s baseball team!

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Ryan pulled “baby” around on the beach!

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Charlie’s secret tree!

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Charlie helping Mama get her room ready for school – she made lunch for us too!

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Ryan’s first time bowling! She almost tied Charlie!!!

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Back to school – 3 weeks ago!!!!

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Ryan’s first Reds game – and she loved it!

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“Come on, Mommy!”

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One of Charlie’s many costumes she wears running around the neighborhood!

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Flagging down the ice cream truck – literally.

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The Joe Nuxhall Miracle League April 17, 2016

Filed under: Uncategorized — ryangrace11q @ 5:02 pm

Around the time Ryan was born, work began on the Joe Nuxhall Miracle League ball fields about a mile away from our house.  In the long and tiresome months after Ryan’s diagnosis, the Miracle League became a glimmer of hope for us.

We would drive by almost daily to check on the progress of the fields and dream about Ryan’s future.  Sometimes we took the girls out of the car and let Charlie explore the area while carrying Ryan in her pumpkin seat.  I remember one particular visit when we met the builders and talked with Kim and Bonnie Nuxhall.  We were so thankful for their dedication to the project and as I introduced them to Ryan, I broke down in tears.  Kim and I had a good, long cry together that day.

In the past 4 years, we attended the first opening day, the first Miracle Ball, watched the adult league games, played on the play set and soccer field, let Ryan practice walking with her walker, and Charlie even learned to ride her two-wheel bike in that parking lot, all the while waiting for Ryan to be old enough to play on a team.  We had already made wonderful memories with our family on those fields.

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And then the day finally came!  Ryan became a Lugnut!

The league is so dedicated to catering to the needs of the players that they had player assessments with physical therapists a few weeks ago.  They watched the players hit, run, catch, and throw in order to pair them with an appropriate buddy for the season.  So many of the buddies are Fairfield high school students and it makes me so proud to see my other “kids” in this role.

Ryan will be playing at 9:30 on Saturday mornings this spring.  The adult leagues will also start to play on Friday nights this summer.  If you haven’t been to see the complex, you need to.  Fully funded by donations, it really is a field of dreams.  https://nuxhallmiracleleague.org/

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Ryan’s buddy, Morgan!

 

 

 

 

 

As Long As It’s Healthy April 10, 2016

Filed under: Uncategorized — ryangrace11q @ 3:58 pm

“Do you want a boy or a girl?”

“I don’t care… as long as it’s healthy!”

Katie and I have been talking about this lately.  How when people are asked this question, that is the answer that usually follows.  And how sometimes hearing that stings.  Sometimes it makes us mad.  And sometimes it doesn’t.  It’s all a part of the grieving process, which I suppose we are still going through.

At first, when Ryan was little, and we were suffering through the diagnosis and still figuring out how to care for a medically fragile child, if we heard this comment we would get so fired up thinking how insensitive it was for someone to say this around us.  Around our “unhealthy” child.  But in hindsight, I don’t blame them.  Hell, how many times did I say this myself?  I remember praying/begging/hoping every day of my pregnancy with Charlie that I would have a healthy baby.  I had suffered an early miscarriage before Charlie and I was not only terrified of losing another baby but terrified of not losing a baby that might have something wrong with it.  When I was pregnant with Ryan and we found out that something might actually be wrong with our baby I remember the feeling of pure dread upon learning that our beautiful baby girl (who looked absolutely perfect on the outside) could have something wrong on the inside that could potentially change the course of our lives forever.

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So what happens if your baby isn’t healthy?  What happens when that perfect boy or girl you dreamed about your entire life isn’t what you expected?

The truth?  You mourn.  You mourn the loss of the baby you thought you were supposed to have.  You cry.  You get pissed.  You ask “Why me?”.  And that’s OK.

But you also love that baby.  You love that baby in a way you never knew possible.  You learn about how strong you and your family are.  And how lucky you are for having the baby you were supposed to have all along.

And what do you do when people say “As long as it’s healthy!”?  Well, I guess that depends on the day.  Sometimes I still get pissed.  But usually I don’t.  Because now I know I’m the lucky one.  I get to celebrate the smallest milestones that I would have normally taken for granted.  And I get to spend every day with a miracle who has opened my eyes and my heart to a beauty I didn’t know existed.  Knowing what I know now, I wouldn’t change a thing – good or bad.

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Our spring has been a very busy one so far… filled with mostly good things.  The bad was when Ryan had her tonsils and adenoids out and a 4th set of PE tubes put in.  It was a rough 2 weeks with her in a lot of pain and not eating or drinking much.  And having tonsil breath.  Holy shit.  That’s bad, people.  Real bad.  But she recovered and is happier than we’ve ever seen her and eating more than ever!

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Before surgery… doesn’t know what’s coming 😦

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Weeeee!

Weeeee!

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After surgery… poor baby. With only Tylenol and Advil to help ease the pain, tonsil recovery was harder than spine surgery.

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She was so ready to leave… so were we!

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Once home, sissy made everything better!

March brought lots of fun and lots of Madness!!!!

Ryan's enjoying school so much!

Ryan’s enjoying school so much!

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The girls fell in love with Snapchat!

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Ryan learned about piggy back rights and requests them often! She calls it "tight" because we say "Hold on tight!"

Ryan learned about piggy back rides and requests them often! She calls it “tight” because we say “Hold on tight!”

Charlie had a special lunch with Aunt Sarah and Muncle Mike at school to kick off March Madness!

Charlie had a special lunch with Aunt Sarah and Muncle Mike at school to kick off March Madness!

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Fun at Grandma and Grandpa’s during March Madness weekend

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Too much fun… can’t hang

We get to watch sissy play basketball too!

We got to watch sissy play basketball too!

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Ryan attended her first dance! The pre-school prince and princess dance at West was so cute!

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Look at Charlie in the bottom corner! Haha!!!

 

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And of course…. EASTER!!!!!

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Did a little geo-caching in Oxford to finish the day!

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Hit B&D of course!

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Spring breakin’ in Cincinnati!

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Next post….. Baseball season!  Ryan will start playing at the Joe Nuxhall Miracle League next week and we can’t wait!

 

PROMPT Speech Therapy January 1, 2016

Filed under: Uncategorized — ryangrace11q @ 11:57 pm

I hope you all had a great Christmas and New Year!  We sure did!  We got to spend time with both of our families and saw lots of friends as well.  The girls were so good this year and Santa knew just what they would love!  Experiencing Christmas through your children is such a gift!

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Cousins!!!

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Katie’s always ready to catch Ryan!

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Loving on my parents’ dog, Lola

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Sleeping sitting up!

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Scuba Santa!

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Ryan’s normal perch!

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To start 2016, Ryan will be getting an MRI to check on her neck.  I can’t believe it’s been over 3 months since her surgery.  She is doing really well but she still bats at her neck on occasion and we wonder if she’s in pain or it just itches.  Every once and a while she will cry for no reason (that is obvious to us) and that makes us a little nervous.  But most times she’s on the move and getting herself into all kinds of trouble!

How Ryan entertains herself while Mama shops

How Ryan entertains herself while Mama shops

Ryan will also be starting a new kind of speech therapy called PROMPT which stands for Prompts for Restructuring Oral and Muscular Phonetic Targets.  It is used to restructure the speech production capabilities of children with a variety of speech disorders, including apraxia.  In real-people terms: it’s physical therapy for the mouth.  The therapist will touch Ryan’s face and mouth to help her form sounds.  Katie has done a lot of research and it looks promising.  Our insurance has approved 3 visits so far.  As Ryan’s gross motor skills improve, her speech does as well and we can see the potential she has.  Just 2 weeks ago she finally started producing the B sound.  She also tries to produce the end of her words more.  For example, “eyes” are “iii…sch” and “box” is “bah…sch”.  But there is quite a pause between the beginning and end of the word.  We are also hoping that this will improve her eating/drinking skills and she will finally get off that damn bottle once and for all!  Ryan has great receptive language and these 2 videos show that her cognitive level is good but her speech is weak.

Here’s to a happy and productive 2016!  Cheers!

 

 

Our Family Dialect December 6, 2015

Filed under: Uncategorized — ryangrace11q @ 12:58 pm

I grew up in a family where we spoke our own language, had our own words, and pronounced those words in a certain way… and I’m not talking about Spanish (although 3 out of 5 of us can speak it).  I’m talking about our family dialect.  According to Webster’s Dictionary, the definition of a dialect is a form of a language that is spoken in a particular area and that uses some of its own words, grammar, and pronunciations.  That explains the Gladish family… and more specifically, it explains my mom.

If you spent time with my mom, then you’d be likely to hear how she went “all over Jibip” (where the hell is Jibip?) to find “shoosies” (shoes) for her “nookies” (feet)… and you could bet “dollars to donuts” that she got them on sale at TJ Maxx.  You might hear her tell you to take your “sneaks” (gym shoes) out to the “gay-rahge” (garage) with the “gar-bahge” (garbage), put your clothes in a “draw” (drawer), and to pick up your “tsotsies” (toys).  Even better… she’ll get you all “koochie” (not coochie, you sickos – it’s pronounced differently) if you have the “hoo-tucks” (hiccups), and after a “pook” (fart) you’ll go “loo-loo-pah” (sleep).

Not to mention the actual language called “Ob” that we can speak fluently.  This was my first “foreign language” and my mom and I used to speak it together so my dad wouldn’t know what we were saying!

Yes.  This is for real.  Here is video proof.

So you can say that I come by it naturally.  Therefore, the Gladish-Effler family has it’s own dialect too.  A lot of it has morphed from kid pronunciations and some of it… well I have no idea where it came from.  But like most families with their own vernacular… it just is what it is.  This is an abridged version of our dictionary:

Pumma = Scooter.  Origin: Ryan

Taggie = The girls’ handmade tag blankets from their Aunt Mary.  Origin: Katie

Muncle = Uncle Mike.  Origin: Charlie (her variation with alliteration)

Splish = Bath (ex: let’s go up for a splish).  Origin: ?

Ooska = This word is used to describe anything little and cute and babyish.  Origin: Katie.  Morphed and smooshed from the phrase “Oh it’s a baby”… “Oh’s a baby”… “Ooska baby”… “Ooska”

Buttski/Snotski/Fartski = Origin: Me. I’m polish.  Everything gets a ski at the end.

Boogedy = What Charlie calls Ryan. Origin: Charlie – but how and why… no clue

Heat seater = Heated seats in the car.  Katie and I just can’t say it any other way.

Crunchy eggs = A delicious combo of goetta and scrambled eggs (non-Cincinnatians need to google goetta).  Origin: Me

Snart = Sneeze/fart combo.  Origin: Me

Cart = Cough/fart combo. Origin: Me

A bothy = A bath with both kids in it.  Origin: Me

Zuh zuh = This is used to describe any awful sound that makes you cringe, like nails on a chalkboard.  Origin: Me

Monk-a-dunk = Charlie’s baby blanket with a monkey head.  Origin: Katie

Gaga = grandma (Liz’s mom) Origin: Charlie

Gaga blankets = Blankets given to my girls from my mom.  Origin: Charlie

Airplane noodles = Plain noodles with parmesan cheese.  Origin: Charlie.  She mis-heard Katie say “plain noodles” when she was about 2 years old and it just stuck.

I love that my kids will grow up knowing and using these words like any other and not think a thing of it.  Only when they say it in front of someone else and get a funny look will they realize that not everyone says it (like I did in 1st grade when I said something about taking the “gar-bahge” out to the “gay-rahge”) and still get ragged on about it.

Thanks for indulging me in that.  Now on to what the people want… the people want the pictures.

Our fall in photos:

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Punkin’ patchin’ it

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Ryan handed these out on Halloween and got such a positive response!

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She had such a great night, and walked so well… and then she fell. Of course.

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Ryan is trying to get rid of her nap… but if you put her in the car… she’s out.

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She loves perching on Mommy’s shoulder!

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Leaving the park is so hard

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Me and my chicas

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Don’t let this fool you – Infusion days SUCK!

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She still hasn’t peed on the potty – but damn, she’s cute!

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Friday’s got me like…

 

Random videos that I want to share: