You think you know disability but you don’t April 19, 2018

Do you know someone with a kid who has a disability?  Are you the sibling of someone with a kid who has a disability? A parent of someone with a kid who has a disability? A teacher of a kid who has a disability?  A colleague?  A volunteer? Do you think you know disability?  You don’t.  The only people who truly know disability are the people living with that child day in and day out.  But even if you spend a lot of time with a person who has a disability, you don’t know disability.

Please, let me explain.  There are days when disability is on the back burner of my mind.  Things seem *almost* normal.  There are days when I actually welcome disability because it has opened so many doors for me.  I love the people that have been brought into my life and the opportunities I have been given because of disability (insert shameless plug for the Fairfield City Schools fishing trip for students with special needs).  But people, let me tell you, no matter how much you think you know disability, you don’t.

The bottom line is, you don’t see the real shit.  You don’t see the all of the really ugly screaming and hitting and kicking meltdowns because we leave the area for your sake – not ours.  You don’t realize that we have to set our alarms for the middle of the night to cut fingernails, or remember to bring the clippers to do it when they are passed out in exhaustion in the car on the way to their various therapies.  That we wait up way past our desired bedtime to change the poopy diaper we know is coming because they have to wait for reflexes to take over when they don’t understand the “feeling”.  That we have to carry a human being more than a third of our weight (we are little moms).  The constant stress and worry of the health and physical issues that arise at any given moment, especially when they can’t verbalize their pain, only cry.  I could go on and on but I won’t.  We don’t want your sympathy or pity.  We need empathy.  We know the difference.

And then there’s this.  The breakthroughs.  The moments we have been working on and waiting for that she decides to show us when she’s ready.

And this.  The innocence and beauty of a child who just wants to be loved and happy.

Kind of like childbirth, I tend to forget the pain in moments like this.  And then I am experiencing those pains all over again.  And again.  And again.  But just like childbirth, it’s worth it in the end.

 

 

Mother knows best February 11, 2018

The best doctors are those that not only treat the whole child, but treat the whole family.  The most professional doctors are those that realize that although they are the expert in their field, the parents are the expert of the child.  And the most compassionate doctors are those that will listen to the parents’ concerns and go above and beyond to do everything they can to serve the child and the family.

A few weeks ago Katie got to thinking.  She does a lot of thinking.  This time her thoughts turned to Ryan’s physical challenges.  At 6 years old, Ryan’s diagnosis of developmental delay isn’t appropriate anymore.  She isn’t just delayed and she won’t just catch up.  Katie wanted answers.  She wanted a name, a title, a true diagnosis for Ryan’s physical disability.  So the research began.  It didn’t take long for Katie to land on something that seemed to fit Ryan.  We decided to email her neurologist, even after she had only seen Ryan in clinic one time, and run our ideas by her.  Below is our email and the doctor’s response.

Along with our email we included a list of Ryan’s other diagnoses and various factors that led Katie to the idea of cerebral palsy, much of which had to do with the abnormal formation of her brain and her still unstable gait.  We met with the doctor on Friday and after talking with us and visiting with Ryan again, she gave her the diagnosis of “Hypotonic Cerebral Palsy”.  We will be meeting with the pediatric rehabilitation center at CCHMC soon and they will also consider adding “Ataxic” to the CP diagnosis based on her physical movements.  From there we will work with them to figure out what Ryan’s best options for therapy and devices will be.  I am so grateful for Katie’s ability to think outside the box when it comes to parenting our children.  Her persistence has opened new doors for Ryan and will give us a greater understanding of how to help her.

The lesson: trust your instincts about your children.  You know them best.  You are their experts.  Doctors only see a snapshot of your child and if they aren’t willing to at least listen and consider your thoughts, it might be time to look for another doctor.  There are plenty out there who are the best because they are both professional and compassionate.  We are so lucky to have found one!

 

 

 

The Good, The Bad, and The Ugly December 18, 2017

I’m not a professional blogger. I don’t get paid for this. This blog is for family and friends to stay updated on Ryan. But sometimes this blog is just for me.  And tonight I’m choosing me.  I’m going to skip the good because I need to vent.  This blog normally has a lot of good, but I’m going to get bad and ugly.  I need to get it all off my chest so I can move on and relax and enjoy the holidays.  If you don’t want that, don’t read on.  *And there will be no pictures*

1. Let’s start by talking about my least favorite thing in the entire word.  Puke.  I have a phobia of all things puke so I’m not going to go into details but the truth of the matter is that a lot of parents of kids with special needs deal with puke more than with typical kids.  Luckily for Ryan, it doesn’t happen as often as it used to when her reflux was at it’s worst, but last week she got sick.  She doesn’t understand what puking is.  She can’t tell us it’s coming and she doesn’t know how to get it where it needs to go.  It’s a two-mom job when Ryan is sick: One mom to hold Ryan between her legs with arms pinned down and body bent forward and the other to hold the bucket.  It is my personal hell.

2. Diaper changing.  Ryan has made some progress along this front but frankly I am sick of changing this kid’s diaper.  Especially when she’s sick.  It’s expensive, it’s stinky, and it’s annoying.  We have daily conversations about Ryan’s poop.  And if it’s slightly different my first thought is: Oh my god, is she going to puke?

3. She’s whiney.  Yeah, yeah, yeah, all kids are whiney, I know.  But a typical kid whines at ages 2 or 3, can tell you what is wrong, and then you can start to rationalize with them.  My kid has been a 2 year old for 4 years.  Why is she whining?  Does she have a loose tooth?  Is she bored?  Is she mad?  Sad?  Frustrated?  Well, I am.  Is she thirsty?  Is she hungry?  Is she sick?  And my first thought is: Oh my god, is she going to puke?

4. Asking people to watch the kids.  It gives me anxiety.  It always seems like a burden.  It’s not like we can just hire any old babysitter, walk out the door, and have a good time.  We have a very, very limited list of people who we trust and are willing to watch Ryan.  If someone is watching Charlie it’s usually because we are at an appointment with Ryan.  If someone is watching Ryan it’s usually because we are trying to have some quality time with Charlie (see #5).  And it is very rare that someone watches both kids.

5. Guilt.  I feel guilty about everything.  Not doing enough intervention with Ryan.  Not spending enough quality time with Charlie.  Letting them watch too much TV.  Wanting to go to work to escape and have fun.  Getting snippy with Ryan for whining.  Getting snippy with Charlie for being too loud.  Getting snippy with Katie for just breathing.  Sleeping on the couch half the time because pretty much every night my thought is: Oh my god, is someone going to puke tonight?  I hope it’s not me.

6. People saying the word “retarded”.  It’s 2017 and I work with people who still say this word.  Get a fucking clue.

OK, I’m done.  Now I’m going to go and feel guilty for writing this blog, and hope no one pukes tonight.  Happy holidays.

Sensory Overload June 14, 2017

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

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

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:

Lots of ice cream was eaten!

 

Charlie went to Star Wars night at the Reds game!

 

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

Celebrating with Kendall!

Blueberry picken’

First sleepover with Charlie’s BFF, Brielle!

Scoping out future pets…

Geocaching with Cousin Jack!

Gaga and her girls on the 4th!

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

Lots of pool time with friends!

A quick visit with Muncle Mike!

Cousin Chloe!!!!!!

My brother Drew’s 50th bday party!

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

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

Mommy helped coach Charlie’s baseball team!

Ryan pulled “baby” around on the beach!

Charlie’s secret tree!

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

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

Back to school – 3 weeks ago!!!!

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

“Come on, Mommy!”

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

Flagging down the ice cream truck – literally.

 

 

 

The Joe Nuxhall Miracle League April 17, 2016

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.

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/

Ryan’s buddy, Morgan!