Wednesday, July 23, 2014

I Can Sport An Amazing Albatross!

Now let me see a show of hands of how many of you read that story about a guy and a boat who killed that bird and then he had to wear the bird around his neck as a reminder of  the bad luck he now carries with him?

It's not one of those books that you have on your coffee table or the one that you read before you go to bed at night.

It's the one they made you read in high school, likely in one of those boring English Lit classes that you prayed for a "C" grade on the final just to pass so that you could graduate?

Anyone?  Anyone?

Does "The Rime of the Ancient Mariner" sound familiar?


Please don't click that red "X" in the top right corner and stop reading. 
I do have a point to make here.

Well, I read that story umpteen years ago and (oh-my-gosh-I-can't-believe-I-am-admitting-this) I have never forgotten about it. 
Or that albatross.
The story wanted you to walk away with the analogy of the albatross as something that you have done or are connected with that keeps causing you problems and stops you from being successful.
My kids are my albatross.
Now wait...before y'all go crazy on me for saying that...hear me out.
My kids are my albatross.
My kids are my reminder.
My kids are something that I have done.
My kids are NOT preventing me from being successful.  
They are my success story.
This fall, I will have a 5th grade girl and a 1st grade boy.
(Did I just type that correctly?  I need to breathe for a moment now.)
They have made leaps and bounds in terms of achievement and progress.
Their speech and language issues have almost disappeared.
Yes, we have some residual issues that need fixin' up, but it's not something we can't handle.
We've had bigger hurdles to jump.
But when I look at them....I see where they were....and I see where they are now.
And when I reflect on those early days....those days of sitting in speech therapy clinics and all the money we invested and the fighting with insurance companies for approval and then the denials and the lack of progress and then the language bursts and then the struggles and then the victories....
....I see the albatross.

Because why would I want to forget the past when the past is part of who they are now and the beauty that has evolved.
And that is something I will wear around my neck any day of the week!
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Tuesday, February 4, 2014

Blogging Today vs Yesterday

Yes, blogging has taken a back seat lately. 

Ok ok.  You're right. It's diminished. 
A lot. 
And it's not that I don't have anything to share or complain about. 
Because I still do. 


But now I have different things going on and, quite simply, life is really getting busy. 

I have a 4th grade girl who is in her 2nd year of gen Ed and is thriving. 
Yes, she has bad days, but don't we all?
She's getting A's and B's on her report card. 
She is articulating better and increasing her sentence structure. 
And she is mouthy with me. 
And has a pre-tween attitude to boot. 
And there are birthday parity invites in our mailbox and rollerskating parties and all of the other "normal things" that 4th grade girls do. 
And I celebrate her and all of her accomplishments. 

And I also have that cute little Kindergarten boy. 
And he has his own hurdles to overcome but he is doing it in his own time and on his own terms. 

And we are still in speech therapy. 

And we are also involved in swim. 
Would you believe that my girl in just one level below swim team???
And my son wants to be "as good as Kate" one day!
Yes, she IS that good. 
The girl who wasn't able to walk until 18 months. 
The therapist who once told me that she will always have motor planning issues and would likely not play sports. 

Take that. 

So yes, we are still around. 
Still in special Ed. 
Still going to therapy. 

But our perspective is different these days. 
And my passion is still the same. 
And I'm still fighting for these kids and being loud when I have to. 

But life moves fast....and if I blink too many times I'm going to miss it. 

Wednesday, January 8, 2014

"She Looks Perfect!"

Now that our (her) THRID surgery is under her belt and we had our post-op visit, I can finally update about our day.

The day started at 0315. 
That's the time my alarm went off.
However, being the Mom that I am, I didn't sleep.
It's amazing what noises you hear when the house is asleep and it's just you and your thoughts and prayers laying in bed together.
Why didn't I just get up and make myself useful:  wash a floor, catch up on my Christmas scrapbook, crochet a blanket.

We just laid there.  Me and my prayers.

We arrived at the Outpatient Surgical Center at 0530.
Surgery was scheduled for 0700.
Kate was happy and giggly....perfect medicine for me, the nervous Mom.
Pre-op was uneventful.

I don't know if it is comforting or scary when the anesthesiologist walks into our room and says "Good morning!  I've cared for your daughter before.  How have you been?" like we are old drinking buds.
Nonetheless, I immediately felt at ease.
She was in good hands.

The Optho resident came in next.
I like her.
Soft spoken, pleasant, caring.
Either she's a Mom....or she was warned about me.
Consents are signed and my heart starts to pick up speed.
I'd like to throw up, but there isn't an emesis basin to be found.
And if my daughter sees me flipping out, then she's going to flip out.

So I sit.
And silently pray.

Just then, he walks in:  our surgeon.
Part of me is relieved because I like him and have the utmost faith in this man.
Part of me wants to cry.
And as hard as I try not to, I begin to well with tears.
And what makes this man, this doctor, this surgeon so top-notch is that he not only cares for the child but he also cares for the parent.
For me.
He sees my tears and knows my fears.
We have been here before on two separate occasions.
He knows me.
He knows my anxiety.
He simply holds my hand for a brief moment and tells me "It's going to be fine".
He stands at the head of the stretcher and with his Optho resident at the foot, they begin to wheel her towards the doorway.

One more kiss for my little girl.
"I love you more"'s what I always tell her.
And again, as the tears begin to flow, our surgeon tells me "We'll take good care of her".
And I can't bring myself to watch them wheel her down the hall:  0720.
Thank goodness my husband is with me...the strong one of the two of us.

At 0740, a call from the OR:  she is prepped and ready to go. 
All is well.
And so my ritualistic pacing begins.
I slowly walk from one end of the waiting room to the other.
I glance at the surgical board to check her status:  in the OR.
I slowly walk to the other end of the waiting room.
And the cycle repeats itself....over and over and over and over.
I am able to tune out everything around me.
Strange, I notice how cold and drafty it is on the one side of the room and how warm the other side is.
I wonder if anyone else in the waiting room picks up on my ritualistic pacing pattern?

0815 and we get the call that she is done and the doctor with speak with us.
Of course, my husband went for coffee, so I am sitting doing the nervous rock in the chair by myself.
The surgeon walks in, calm as usual.
I really need to learn how to tap into my inner calm like that.

Once in the PACU, I can hear her squeaking this pathetic cry.
Post-op psychosis...great.
For the next hour, my sweet 10 year old baby is a whining, demanding girl giving the PACU RN a hard time.
I lost track of how many times I had to apologize to her for Kate's demands.
One hour later, we are on our way home to begin our recovery.

For the next three nights, Kate sleeps with me.
I can't bear to be away from her.
I need to hear her breathe and she needs to know that I am just one arms' reach away.

On post-op day #8, we meet with our surgeon.
After a few minutes of exam, I hear him say "She looks perfect!"
I think that was the first time I have exhaled since she went into the OR.
It worked.
She is once again aligned.
And for now, all is right in our world.
Thanks, Dr. McDonnell. 

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. 
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!

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!

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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.

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