Friday, September 6, 2013

A Long Overdue Update.....

It's been quite some time since I have blogged about anything. 
Life has really gotten in the way...I am sure you all know the feeling. 
So let me try and give you the cliff-notes version of the last few months:

We did 6 weeks of ESY. 
While the boy loved it, it became a struggle for the girl and myself. 
I am not sure what when wrong and at what point things just started to collapse, but it wasn't the greatest of times for Kate. 
Many times she came out of school sobbing. 
Not just tears. 
Sobbing tears. 
I should've pulled her out of school and left it at that, but I was selfish and wanted those 3 hours to myself to decompress and clean my house and not have to think of homeschooling her for the summer. 
Bad Mom, I know. 

ESY ended and all was right in the world again. 

We chose to take a hiatus from speech therapy for the summer. 
Instead, we substituted a five week speech camp for both kids. 

Best. Decision. Ever. 

For three hours one day a week, they participated in a mixed-ages group working on social skills and articulation and anything else the clinic SLPs wanted to work on. 
Every week was a different "theme", so it kept their attention. 
They loved it. 
I loved it. 
Granted, our lovely United Healthcare insurance doesn't cover a penny of camp (or any of our speech therapy sessions) so this was an out-of-pocket expense. 

Thanks for nothing, UHC!

But in the end, it was worth it. 

We spent the last five weeks of summer enjoying summer. 
Picnics. 
Road trips. 
Lazy days at the pool. 
No school. 
No therapy. 
Sleeping in until 7:30am.....yes, that is "sleeping in" in our house. 
Staying up late and cuddling on the couch with my kids. 

It was a good summer. 
I made sure they had fun and remembered what it was like to be a kid and not a kid needing to run run run for therapy or school all the time. 

I think they appreciated it. 
I know I did. 

School started on August 22nd. 
More on that soon.....maybe tomorrow?

Tuesday, July 23, 2013

Follow the Signs


Isn't this a great laminated item?

I found this in my daughters backpack today. 

Makes perfect sense, doesn't it?
For kids who are visual learns, this is a perfect way for them to let adults know how they are feeling!


Friday, June 21, 2013

SlowTunes App to Teach Our Children to Sing Along!

We all know that music is a wonderful tool for learning, especially for a child with special needs.
How many of us have improvised our own songs while talking and playing with our children?

Probably all of us!

And who hasn't sung the ABC's to their children?

Now that my children with apraxia have started to like today's music on the radio, I often hear them trying to sing along with the song.
But sadly, some of the lyrics are so fast that their little mouths can't keep up or they make up words that sound like the lyric (which actually makes me giggle in the front seat!)

For example, Lady GaGa's "Bad Romance" comes out as "Bad Horse Dance" according to my son.  And he can sell it, too!  For a while, I was saying "Bad Horse Dance" as I was singing along.

(Are you laughing now with me?)

But thanks to the brilliance of Brian Stokes, a Dad with a daughter with apraxia, he has developed an amazing app that actually S-L-O-W-S down any song without changing the pitch!

Cool, huh?

In fact, this app could be used by SLPs during therapy sessions as background music of familiar tunes, help with articulation issues, teach and learn new songs, and so on!

You can see Brian's website here and learn more about the app!
***Add your favorite songs from your music library.
***Play songs at three speeds: normal, slower and slowest.
***Configure just how slow you want each speed.
***Stream songs to your AppleTV over AirPlay.

In the App Store on iTunes, it is only $1.99!!!!

You can also follow SlowTunes on Twitter and LIKE them on Facebook!

And for two readers (if you are reading this to the end and are paying attention), Brian is offering a couple of free codes!

http://tokn.co/ztcq22wk
http://tokn.co/s839gcct

Congrats to the first two people that grabbed these codes!  And thank you, again, Brian for a wonderful app to help our kids struggling with speech issues!

post signature

Thursday, June 6, 2013

Change: The Good, The Bad and The Ugly

Change is inevitable.

Seasons change.
People change.
Life changes.
Change happens, and there is nothing we can do about it.

The Good:  we are moving on from preschool to Kindergarten.
This is a good change.
We delayed this change by one year and it was the best change we made.

The Bad:  we are leaving and losing some great teachers.
We loved our preschool team.
We loved our 3rd grade teacher.
We really loved our 3rd grade Special Ed/Supportive Ed teacher, but she is moving on to a different part of the district and we can only wish her well.....and not dwell on the fact that we will miss her terribly.

The Ugly:  there were some challenges this year.
We choose not to dwell on them, only to learn from them.
We will reflect on them if needed, but we won't focus on them.

Because change is good.


post signature

Saturday, June 1, 2013

She has a BFF!

This made my day!
The innocence of one child looking past the struggles of another and seeing a little girl who is no different than the others. 
And becoming BFFs. 

Tuesday, May 14, 2013

On This Apraxia Awareness Day.....


...I am going to celebrate!


Why, you ask?
Because I refuse to allow apraxia to define me or my children.

We are NOT defined by apraxia!

On the contrary, we define the disorder.

We have been living a life with apraxia either three steps ahead of us or just one teeny tiny step behind us for 9 years.
It's the monkey on our backs.
It's the elephant in the room.
It was the nightmare that made my heart race as I lay in bed at night.
It was the prayers I would say every night (and still do!).
It was the angst in my heart when I watched my child play alone in the park when surrounded by other children.
It was the shock and dismay when I realized that I had two children with the disorder.
It was blaming myself for giving this to them.
It was over-analyzing my pregnancy...what I ate...what I did...the epidural I requested.
It was me wondering if I should have never nursed my babies.
It was me wondering if I should have nursed longer and not bottle fed them.
It was the tears I shed at IEP Meetings over and over and over.
It was the fight I put up with insurance companies.
It was the decision to end relationships with therapists because even they "just couldn't get it".
It was the constant stares in stores.
It was the pathetic looks from strangers.
It was the mastering and translating of a new language.
It was learning sign language.
It was homework at the age of 2.
It was homework at the age of 3.
It was homework at the age of 4.
It was drills and sounds and PECS and Boardmaker.
It was the 1,000's and 10,000's of dollars spent on speech therapy...5 days a week.
It was self-contained classrooms and labels and special education.
It was losing old friends because they couldn't cope with your childs disability.
It was finding out who our real friends were and still are.
It was networking and blogging and Twittering and Facebooking.
It was moving on.
It was our life.

Today, May 14, 2013.....is Apraxia Awareness Day.
I know what it is.
I know it's neurological foundation.
I know the signs and symptoms.
I know that I can write a book about this road I have traveled.
I know how it robbed my children of typical babbling and speech and language production.
I know how it affected them socially.
I know that I don't need a day like today to remind me what apraxia is.

Or was.

Because personally, for me and my family, apraxia is not in charge of our lives like it used to be.
We battled and fought for 9 years.
And now we are one step ahead of the apraxia beast.
It is still the monkey on our backs, but the load is not as heavy anymore.

We don't cry at IEP Meetings anymore.
We don't fight insurance companies as much anymore.
We don't sit in therapy waiting rooms five days a week anymore.
We don't stand for those pathetic looks from strangers anymore.

We still pray.
We still cry.
We still stay awake at night....wondering the "what-if's".
We still have broken hearts, but they are becoming fewer and fewer.
We still educate others.
We still network.
We still do homework.
We still do drills and sounds and PECS and Boardmaker because they make our lives easier and, frankly, we love them.
We still do special education but we also mainstream.
We have newer, better friends.
We have awesome therapists.
We still network and blog and Twitter and Facebook.

And we celebrate!
We celebrate the perfect /t/ sound!
We celebrate general education!
We celebrate handwriting!
We celebrate singing!
We celebrate decisions to not start Kindergarten because everyone else is!
We celebrate BIP plans (privately, of course, because her speech is getting sassy now!)
We celebrate the little milestones because they have FINALLY been reached!
We celebrate daily!
We celebrate the child as a child and not the child with a disability!
We celebrate life!
We celebrate love!
We celebrate our dedicated therapists!

So on this Apraxia Awareness Day.....we CELEBRATE!
Because 9 years ago, the road was so long and so dark.
And today, that road behind us doesn't look so bad anymore.
But we will never forget what apraxia did to our family.

We are stronger.
We are resilient.
We are passionate.
We are fighters.
We are hard workers.
We are dedicated.
We are blessed

We are a tough family....and with family, anything is possible.
And families celebrate!


post signature

Sunday, May 12, 2013

Happy Mothers Day!!

Wishing you a beautiful day!!!

Thursday, April 25, 2013

Meet Apraxia Dad!

I am the blogger in the family.
The loud Mom.
The spitfire.
The advocate.

Dad isn't as loud, but don't let that fool you.
He the quiet champion.
The quiet cheerleader.
The quiet(ER) parent at the IEP meetings and Parent Teacher Conferences.
He takes it all in and digests it.
He's the "ying" to my "yang".

We balance well.
I have always fought the insurance companies alone and had no problem with that job.
And I still don't have a problem with it.
Fighting for my kids is an adrenaline rush for me.
It's my drug.
But now Dad is stepping into the ring.
I think United Healthcare needs to be warned.
Because when Dad talks, people listen.

And nothing is more awesome than a loud Dad fighting for his kids.

Go, Dad, go!

Saturday, March 23, 2013

Ready for Round 2

So UHC denied our claims.

The illiterate Customer Service rep couldn't pronounce half of the words on the pre-designed template that he had to read.

It's "congenital", you dunce.
Not "con-neg-ital".
Guess he did poorly on his report card when it came to English and grammar.
And if they graded on manners, I'm sure he flunked that class, too.
Oh, how typical.

So Round 1 is done.
Did they think I would run to my corner and cry and give up?
Take off my gloves and head for the showers?

Obviously, UHC hasn't read this blog.
Maybe they need to start from the beginning....from page one.
And maybe they should get to know our lawyer.

Ding.
Round Two.

Saturday, February 23, 2013

Accountability

Nowadays, when you call a 1-800 number for customer service, you are told that "this call may be monitored for quality assurance purposes".

And you are typically on hold for a few minutes after pressing 1 then 4 then 99 to get to a real person.

And during that hold time, you are probably reminded at least 3 times about the QA bull. Over and over and over.

Well, I have an awesome idea!

Since they are being recorded for QA purposes, those calls are saved.
Someone must have the boring job to listen to them in the QA department, dontcha think?
And someone must tell the employee on the phone call during their annual employee evaluation "Hey, next time you talk to a customer, you should say ABC instead of XYZ, alright?"

Makes sense, doesn't it?

So if I called United Healthcare at the beginning of January and confirmed that codes and coverage were in fact true and that if my provider did the same thing (twice) and was told that specific codes in question were truly covered and approved codes......and those calls were being recorded for quality assurance purposes.......

You are where I am going with this, don't you?

Well, don't you think there should be some accountability on UHCs part for talking out of both sides of their mouths now?

For quality assurance purposes, of course. Because that's my point here.

Get it, UHC?
Lets talk accountability, shall we?

Tuesday, January 1, 2013

Happy New Year!

My 2013 wishes for you all....
 
...that there will be tons of speech and language explosions!
 
...that fine motor skills will finally start to fall into place!
 
...that social skills will come easily for our little ones!
 
...that physical issues will not seem so physical anymore!
 
...that handwriting will truly be without tears!
 
...and that you are blessed with more surprises than you can imagine!
 
Wishing you all the best for 2013!

post signature