I am a walking contradiction October 21, 2018

I am struggling lately.  I feel depressed.  Defeated.  My emotions and thoughts are all over the place.  I feel like I am constantly contradicting myself.  For example, I feel the need to explain myself because my friends might be worried about me.  I’ve been quieter.  Less fun.  Less Liz.  On the other hand, I really don’t give a crap what people think because no one will understand anyway.  I’m sure there are a lot of parents of kids with special needs who feel the same way… at least I hope so… so I’m not alone.

Something that I’ve always struggled with is the contradiction between being a champion of the cause, a spokesperson, a tiger mom if you will, for the benefit of all children with special needs and the urge to crawl into a hole and shut the world out.  Some days I want to show everyone how great Ryan is, how far she’s come, and although no one will ever really understand our life with her, I want to shout from the rooftops that although being her mother is the hardest thing we have ever experienced, it is also the best.  On other days, I just want to tell everyone to mind their own business and leave us alone.  I’m caught between love us and go away.

Our most recent struggle is Ryan’s schedule at school.  We are just finishing the first quarter of the year, and there has only been 1 week out of 9 where she has gone every single day for the full day.  7 hours from bus ride to bus ride is a really long day for her because she fatigues more than the typical kid (probably because of her CP). She comes home, plays a little, takes a break with a show or iPad, and then at the dinner table she is practically falling asleep.  Some nights it’s a struggle to get her a bath and in bed fast enough.  I know the transition from Kindergarten to 1st grade is hard on most kids, but with Ryan, after a couple long days she gets overtired and actually can’t sleep.  Many days she has woken up at 4:00 or 5:00 a.m. so she will go to school but has to get picked up early to get a nap.  If Ryan doesn’t get enough sleep she won’t eat.  If she doesn’t sleep or eat she’ll get sick.  We have to be really careful.  We met with her teacher and adjusted her schedule to try to make the most of her day even if she has to leave early.  But just recently she has paired those issues with behaviors such as refusing to get on the bus and not wanting to go school altogether.  We are now considering adjusting her schedule again so she doesn’t have to go full day.  So there’s another contradiction: more school = more learning (and she is learning A TON) yet more school = more fatigue.  More fatigue = more sickness yet napping every day = not pushing her to her full potential.  Or does it?  I really don’t know.

I’m sure we’ll figure something out.  We always do.  Put out one fire and two more pop up.  In the meantime I’ll be here like:

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!

 

 

 

 

As Long As It’s Healthy April 10, 2016

“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.

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.

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!

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

Weeeee!

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

She was so ready to leave… so were we!

Once home, sissy made everything better!

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

Ryan’s enjoying school so much!

The girls fell in love with Snapchat!

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!

Fun at Grandma and Grandpa’s during March Madness weekend

Too much fun… can’t hang

We got to watch sissy play basketball too!

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

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

 

And of course…. EASTER!!!!!

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

Hit B&D of course!

Spring breakin’ in Cincinnati!

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

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!

Cousins!!!

Katie’s always ready to catch Ryan!

Loving on my parents’ dog, Lola

Sleeping sitting up!

Scuba Santa!

Ryan’s normal perch!

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

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!