Our Holiday with the Mouse

My family splurged on a trip to Disneyworld for Christmas.  We left on December 19^th and returned home on Christmas Eve. 

We flew from CVG to MCO.  It was an early morning flight and as soon as we got to our terminal, there was a huge display of balloons.  Anyone who knows LJB knows his obsession with balloons.  More than once, we have left the park in shame after LJB janked balloons from some unsuspecting first birthday party goers.  We have had hour long meltdowns while on a road trip because we drove past a car lot where balloons were strategically placed on every car antennae and I refused to stop and steal one for my child.  Kroger trips?  Fugeddaboutit.  We can’t go anywhere near the floral/balloon section.  However, I think a fair amount of sleep deprivation and a donut distraction and unfettered access to all the apps and games on the iPad kept us from beginning our trip that morning with a meltdown.  I also made sure to keep the balloon bouquet out of his line of sight as much as possible.

Once on the plane, Elmo and Mickey Mouse got us through the 1 hour flight.  It was pretty easy, but I can’t imagine doing a long flight.  That hour and fifteen was about our limit.

It must be the Disney magic, but that first day was such a low stress kind of day.  My daily life is stressful and hectic.  We are always on the move and I am always trying to foresee the next meltdown and figure out how to avoid it.  I sometimes get so bogged down in playing defense that I forget to enjoy the moment.

One low stress day turned into a low stress week.  Despite a trip to the ER, missing a full day in the parks, and having to change plans mid-stream, we managed to have one of the most fun vacations ever!

My takeaway from our trip is to try and absorb more of the moments that make up each day.  It takes an immense amount of planning for us to do lots of “normal family” things, but once I’ve planned all I can I need to let go and enjoy.  Toss out the mommy guilt for things beyond my control and let it be.  I just might find that there's so much fun I've been missing out on!

Let's Be Real

More than 2 years post autism diagnosis, our lives have changed so much!  LJB is in pre-school for 4 hours every day.  He receives Occupational Therapy, Speech Therapy, and Behavioral Therapy at both pre-school and with our private therapists.  These saints (a.k.a. therapists) have worked magic with my child!  I don’t know what we would do or where we would be without them.

All of his progress is great, but can I be real with you?  Let's just be real.

Before we were thrust into this world of therapies and home visits, I was always so concerned with making sure that things were just so before we had company.  I would never have let someone in the door of my home if the floors hadn’t been swept, the toilets scrubbed, all surfaces dusted, etc.  I made sure everything was in its place and perfectly tidy before we had guests.  This has all gone out the window.  At our behavioral therapist’s last visit, there was a pile of day old dishes in the sink, the couch was covered in a thin layer of cat hair, LJB’s dirty clothes were in the living room floor, and there were tooth paste smears in the sink.  I just didn’t have the energy to pretend any more. Our life is chaotic and my house is messy.

You know what? She never batted an eye.

In the new year, I’m working hard on being real.  Stop pretending; stop fussing over the things that don’t matter.  There were dirty clothes in the floor because I spent an extra 10 minutes that morning snuggling my boy.  The dirty dishes?  Yeah, that’s because after a full day of work and a therapy appointment, I managed to cook a nutritious meal for my family.  What can I say?  The tooth paste is evidence that after more than a year of meltdowns and interventions, LJB will actually let me brush his teeth (most days).  The cat hair is from the cat that brings comfort to an overwhelmed 4 year old after a day of big demands, working harder than 95% of the adults I know. I wouldn’t change a thing about that mess.

So, if you come to my house – and you’re always welcome- just know it’ll be real.  I won’t be pretending.  There will probably be dishes in the sink and a mess in the living room. 

On a related note, I’m trying to be more real and let Lennon make relationships on his own terms.  I’m retiring my helicopter wings and leaving him to play.  This is possibly the hardest thing I’ve done since I became a parent.  Letting him go and watching him struggle to talk to friends is so hard.  When his friends, cousins, care givers, etc. give too many verbal instructions, or ask too many questions, LJB’s brain stops working.  He gets so frustrated.

Typically LJB will try one time to use words to let someone know that he is becoming overwhelmed.  However, this usually just sounds rude to someone who doesn’t understand that when he yells, “STOP TALKING!”  what he really means is, “The words are coming out of your face faster than they can be processed by my brain.”  After that one chance, he resorts to some of the old behaviors that we are trying so hard to extinguish.  He throws things, becomes self-injurious, cries, hits, etc.  I try staying away, letting him work it out.  But it is hard.

So I’m not going to pretend like it’s easy to be real and to let go BUT since I began making the effort I’ve been less stressed.  I’ve learned that those that love us, love us no matter what my house looks like or how many times LJB tells them to “STOP TALKING!”  The mess can wait, it’ll be there tomorrow. In the meantime, I'll be snuggling my boy and his kitty, we'll be having our home cooked dinner on the couch, and watching the Lego Movie for the 10 billionth time.  This is real life.

“Quiet down cobwebs, dust go to sleep.  I’m {being real with my 4 year old} because babies don’t keep!”

A Disclaimer

Here is the disclaimer:  I have a brain injury.  Do not hold me accountable for anything you tell me for the next several weeks, expect me to ask you the same question 100 times, and expect my typical ditzy-ness to amplified 10 times.

I want to blog.  I want to write about all the incredible stuff we've done over the past 6 weeks, but for now I've got to keep it short and sweet.

May was a wonderful month!  We participated in the Walk Now for Autism Speaks walk in Cincinnati.  It was great!  I had no idea what to expect and at the moment I can't remember all the details, but I remember the overwhelming sense of love.  People I lost touch with years ago purchased Team Lennon tee shirts in support of my boy, we had a larger crowd show up to the walk on our team than I ever imagined would be there, and we tripled my fundraising goal.  I call it a success!

The day after the walk was LJB's 3rd birthday party.  We had a blast.  It was our most successful birthday party to date.  I believe it was successful for 2 reasons, I didn't place any demands on the little dude and let him experience the party as he wanted to.  There was no forced interaction, no required present opening event, etc.  Secondly, we have made so much progress that he is day to day a different child that he was a year ago.  This is one hard working little dude!

Then came June.  All I can say is I am glad this month is almost over!  We had LJB's 3 year check up the first week of June.  The check up resulted in a referral for an EEG and a neurologist.  We see the neurologist tomorrow and I'm nervous to say the least. 

I started the second week of June by totaling my car.  My tire blew and I hydroplaned across the highway during morning rush hour on my way to work.  I crossed 4 lanes of traffic twice.  Thankfully, I didn't hit any other vehicles, but after making contact with the retaining wall on both sides of the road, my car was toast.  RIP my Prius!

A broken ankle and a concussion later, I am on the mend.  Remember my disclaimer, yeah, post concussion syndrome.  Google it. 

The good news:  My boy is 3 and is completely (day) potty trained.  The car accident was far less tragic than it could have been -- I am still here.  My work is not done.  Cars can be replaced.  I'm already getting better -- last week I couldn't have even written 3 sentences.


There will be longer posts and pictures of these events to follow.  Until next time...

LJB is 3! (tomorrow)

May 8th, 2010

Three years ago today, I was walking and walking and walking and walking through the halls of Saint Joseph East trying to speed up my labor.  It was the grand opening of the new Women’s Hospital and there were giddy, expectant parents everywhere touring the new facility.  I was about to be a mama.  Everything was perfectly peaceful.

1 Month Old ;)

 

Two years ago, my little baby was about to be one year old.  That first year flew by faster than any year of my life to date.  He was so handsome, so sweet, so perfect.  LJB had the baldest little 1 year old head and still has those piercing baby blues.  His smiles came easy and his laughter was contagious.

First Birthday, First Mother's Day



Over the next year, this adventure took unexpected twists and turns.  There were happy, joyful moments of first steps, first words, first vacations.  And there were agonizing, painful moments of charting unknown waters, watching LJB fall farther and farther behind his peers, watching him struggle to reach milestones that come so naturally for most.

Shortly after his 2^nd birthday LJB was diagnosed and that is when the real work began.  In this world of parenting a “high functioning” (whatever that means) autistic child, I have had to spend so much time trying to explain his struggles to others, oftentimes having to convince family, friends, and professionals that there is a struggle.  Just because he is high functioning, just because at time, LJB can blend in with his peers and you would never know that he has autism, doesn’t lessen his struggle.  All of this convincing and explaining has its purpose- to get my boy what he needs.  To qualify him for services that will make the impossible possible for my kiddo.  However necessary, it is still wasted time.  Time I wasted when I could/should have been talking about all the things that make him wonderful, all the parts of him that make my heart ache with love for this little boy, all the joy that he brings to the world. 

In honor of his 3^rd birthday tomorrow, I’ve compiled a list of some of my favorite things:



  

Curls!



1.  The way the back of his hair is always extra fuzzy in the mornings and extra curly after a bath

2.  The squinty face he makes when I take his picture

3.   The way he says “mama” with a little lilt on the end

4.  The way he loves his kitty

5.  The puddles in the bathroom floor after he finishes taking a bath

6.       How he runs through the living room and always expects someone/something to chase him

7.       The way he says, “ready, steady, GO!” before sending his car across the room

My guys!

8.       The way he purses his lips before offering a kiss

      9.       The way he still likes for me to hold him

10.    Watching him love his daddy

11.    Watching Mr B love our boy

12.   The way he says “okay” when I tell him not to get out of his bed at night

13.   The way he immediately gets out of his bed to test the door knob as soon as I close the door

14.   His innocence

15.   His giggle and his belly laugh

16.   The way he tells you what is about to happen on his favorite movies and TV shows, perfectly scripted

17.   The way he dances and always wants me to dance with him

18.   The way he lays on the couch like a teenager, all sprawled out

   19.   The fact that none of the flowers in our front yard have blooms because LJB picks them all

   20.   The way he can’t pass a puddle without jumping in it

   21.   His fascination with bugs

   22.   Watching him work so hard and achieve so much

   23.   Seeing the world through the eyes of a 3 year old

   24.   The little dimples on the backs of his hands

   25.   His sweet little grin and curious eyes

But most of all, I love being his mother!  Happy birthday, Buddy!

An Easter Post

Holidays can be hard for us.  Of course they are joyous.  Of course we look forward to them.  But there is always this fear in the back of my mind that its all going to fall apart at any minute.  I have to plan for weeks, prepping LJB with social stories.  If we are traveling, I have to make sure that wherever we are staying has a place where he/we can escape.  I have to lay some sort of expectation for those that we will visit because we never know when he is going to melt down, and they need to understand that when he is upset or overstimulated that we need low lights, very little noise, etc.

Some of the stuff that I enjoy most about the holidays: house full of family, a break from our routine, lots of laughter, etc. are some of the very things that often send LJB over the edge.  This is hard.  I miss these types of holidays. 

It is okay to miss what used to be, but I also find joy in the what is now.  Tonight Mr B and I dyed Easter eggs with our boy.  It was so fun.  He arranged the cups of dye on the kitchen island.  I am sure it was probably coincidence, but he put them in ROYGBIV order.  As LJB dropped each egg into the cup of dye, he repeated the same instructions:

LJB: "Egg in (yellow)."
LJB: "Okay, I help."
LJB: "Out."
LJB: "It's okay."

Precious.  And pretty funny.

I am enjoying this holiday.  We are making memories.

Word to the Wise

I was trolling facebook the other day and there was a suggested link to a Huffington Post Parents article that caught my attention. Autism is not a parenting fail.  With a title like that, I had to read it and, boy, am I glad I did.  I'll tell you what, I've read it at least 3 times a day since then.  Brenda Rothman's words were exactly what I needed to hear that day.  It's my new mantra.  You should check it out.

I read the article aloud to Mr B.  We were both silent for sometime after.  It was just this sense of....I don't know....camaraderie....no....being understood?  Maybe.  It's hard to explain.  I think its hard to find words that describe so many moments in our lives.  This was one of those moments.  I swear she could have been a fly on the wall in our house during those early days.  My mommy radar was telling me, "something isn't right."  But everyone else was telling me otherwise.  Always listen to the mommy radar.

A few weeks ago, I spent the night out of town with my dear friend.  We were shopping for wedding dresses and bridesmaid dresses.  Such a precious time.  I made many memories that weekend.  While in town, I also managed to squeeze in some QT with a dear friend I'd nearly lost touch with (and probably would have without FB).  When I was in college, I worked teaching the 2-year old class in a Mother's Day Out Program.  It was during my first school year teaching MDO that I met the P Family.  Susie and I clicked from the start and I fell in love with her mini-me...a quirky, smart, little 2-year old.  I remember the Thursday morning before Christmas break that Susie told me that sweet little peanut was on the spectrum.  I thought...there's no way!  She's so smart and she seems so capable.  Lord, I hope I didn't say the things that came to my mind, but I can't remember.  I just remember feeling the palpable heartbreak and fear and 5,000,000 other emotions that I wouldn't understand for 10 more years.

Fast forward and I am having that same tear-filled conversation with a day care staff 100 miles away.  I am on such a similar journey.  She knows my fears because the same ones kept her up at night, she knows the isolation, she knows teh sense of utter helplessness, she knows the joy and the awe that I experience daily.  She's never met my boy, but she knows.  How good it was to share coffee and break bread with someone who knows.

In other news, the B's have our fingers crossed for a visit from Gramma and Grandaddy this weekend.  Don't tell them , but if they decide they can't make it up north, we may take the crazy wagon down south to visit them.  LJB has his first in over a year visit to the dentist in the morning.  Last week was crazy between illnesses, injuries, and work meetings, but we survived and this week has already been less dramatic.  Next week LJB has his final evaluation for the Early Intervention program, a home visit from his new ABA therapist, and his pre-school evaluation.  All this schedule change will likely make us a flappy, echolalaic, pacing bunch of crazy...but I guess I'd rather get it all over with at once.  At least we can engage in kitty therapy at the end of every day : )

Thanks to the United Way!

I have been fortunate enough to work for companies that truly model a giving spirit. This past year, we benefitted from some of those gifts. I am a firm believer that you should always give credit where credit is due. 

 

I recently sent the below email to the United Way contact for the property management firm where Mr B and I both work. Please consider making a donation to the United Way!

 

Dear Meg-

 

For the past eight years, I have always participated in United Way giving campaigns, first while I worked as a banker and then for the past five years as a property manager. 

 

During the summer of 2012 I found myself in a position I could have never imagined.  My son, Lennon who was born in May of 2010 had developed fairly typically as an infant but by his first birthday, he began missing milestones.  By the time his second birthday was approaching, I was at my wit's end.  Lennon was not talking.  Some of the skills he had mastered were lost.  He rarely looked at me and was off in his own world most of the time.  He didn't interact with other children and had begun having severe temper tantrums.  My husband and I began living like hermits because Lennon was so predictably volatile in groups of people and public places that it was too stressful for all of us to even leave the house.  At his 2 year well-child appointment, we were referred to First Steps, Kentucky's Early Intervention Program, by his pediatrician.  First Steps was able to provide some support for us, but not enough.  Though all the therapists that evaluated Lennon suspected that he had autism, in order to have a diagnosis and qualify for more support, he needed an intensive level evaluation.

 

This type of evaluation is very costly and not covered by our insurance.  Thanks to funding from the United Way and some other groups, Lennon was able to have the evaluation at New Perceptions in Edgewood, KY.  The day his formal diagnosis came back was hard, but having the financial burden of the tests lifted off my shoulders made it easier to cope with.

 

Seven months later, Lennon is attending Redwood Rehab (also a United Way Recipient) in their inclusive pre-school program.  He has made many strides thanks to the therapy he has received and will continue to receive as a direct result of his intensive level evaluation that would not have been possible without donations to the United Way.  Additionally, in May, when he turns 3 and ages out of First Steps, he will attend a Summer program at Redwood to bridge the gap between early intervention services and school-age services for children with special needs.  This program is also funded at least in part by donations to the United Way. 

 

I am so thankful for the United Way and all the hard work that folks like you do to get funding for these programs.  I truly don't know where we would be right now if it wasn't for the support from the United Way!  Thank you, thank you, thank you!

 

 

Yours Truly,

 

Leanna Bush