Monday, August 31, 2009

Be. All That You Can Be.



an advocate, that is.
Be strong.
Be assertive.
Be determined.
Be steadfast.
Be proactive.
Be that one-man Army that you are.
Be the voice that you know you can be.

Don't be afraid to say what you mean and mean what you say.
Your children depend on you.

Fight the fights that need fighting (taken from my favorite movie "The American President").
Your children rely on you.

Find a platform and take a stand.
Know your information like the back of your hand.
Know your numbers.
Know your statistics.
Keep your information close to your hip, yet don't give them everything all at once.
Trust me, there will be plenty of time for you to unload it all on them.

Be it a school, a group, an insurance company, a political rally.
Stand up for what is right and for what children need.
They are only small voices who, sadly and for some reason unknown, cannot be heard.
Bring it to the table.
Most of the people on the other side of the table don't have a clue.
Remember....they live the "perfect" life: perfect house, perfect spouse, perfect children, perfect job, perfect lawns, perfect salaries.
They don't have a clue.
Make them answer for their actions.
Make them take ownership for their actions.
This is your job for at least the next 18 years. Maybe longer.

And at the end of the day, when you lay your sleepy head on that pillow, you will rest well knowing that you did the right thing.
You were put on this earth to be the best at this job: a parent.
You fight the good fight.
And you will do it again tomorrow.
And the next day.
And the next day.
For the next 18 years. Maybe longer.

And there will be a special place for you in heaven one day.
It was Jesus who said "Let the children come to me".
He knows.
He knows what you are doing.
He knows what you will be fighting tomorrow.
And He knows that they will have to answer for their actions, their behaviors, their discrimination's one day.

Now think about it: who should be worried now?
Certainly not you for what you are fighting for.
All for the good of a child.
Just do it.
Just be.

Sunday, August 30, 2009

Ber-Day! (translation: birthday!)





So we had Andrew's 2nd birthday party on Saturday. Technically, we were 2 weeks late in the celebration, but both kids were in a wedding on his ACTUAL birthday (August 15th), so a party on that day was out of the question.

But....but....my little guy said the word "birthday".
Yes he did!
We were all getting ready to sing to him with his cake and I said, "Andrew, come by Mommy so we can sing Happy Birthday". Just then, a squeal of a sound and the word "Ber-day!" came out of his mouth!
What a wonderful birthday gift (for Mama, that is!)

Speech therapy is such a wonderful gift.

Happy Birthday, little man.

Friday, August 28, 2009

How Ironic Is This?

Talk about an oxymoron!
Here I am....blogging about speech.
Kaitlyn's speech...that is improving.
Andrew's speech....that is evolving.
And my speech.....that has been heard, denied, heard again, censored, and questioned.

There are so many facets of speech that we can talk about here.
My favorite is taken from the First Amendment from our United States Constitution.

"Freedom of speech in the United States is protected by the First Amendment to the United States Constitution and by many state constitutions and state and federal laws. Criticism of the government and advocacy of unpopular ideas that people may find distasteful or against public policy, such as racism, are generally permitted. There are exceptions to the general protection of speech, however, including the Miller test for obscenity, child pornography laws, and regulation of commercial speech such as advertising. Other limitations on free speech often balance rights to free speech and other rights, such as property rights for authors and inventors (copyright), interests in "fair" political campaigns (Campaign finance laws), protection from imminent or potential violence against particular persons (restrictions on Hate speech or fighting words), or the use of untruths to harm others (slander). Distinctions are often made between speech and other acts which may have symbolic significance. Efforts have been made to ban flag desecration, for example, though currently that act remains protected speech."

Freedom of speech is the freedom to speak freely without censorship or limitation. The synonymous term freedom of expression is sometimes used to indicate not only freedom of verbal speech but any act of seeking, receiving and imparting information or ideas, regardless of the medium used. Freedom of speech and freedom of expression are closely related to, yet distinct from, the concept of freedom of thought.[citation needed] In practice, the right to freedom of speech is not absolute in any country and the right is commonly subject to limitations, such as on "hate speech".

"The right to freedom of speech is recognized as a human right under Article 19 of the Universal Declaration of Human Rights and recognized in international human rights law in the International Covenant on Civil and Political Rights (ICCPR). The ICCPR recognizes the right to freedom of speech as "the right to hold opinions without interference. Everyone shall have the right to freedom of expression".[1][2]

Enough said (for now).

Thursday, August 27, 2009

Don't Do It!


Don't compare apples to oranges.
That is what our children are.
No, they are not fruit.
They are they own person.
They are different.

We are all guilty of doing this. Doctors do it. Our parents and grandparents do it. Our annoying in-laws do it (and too much, I must add!)

I do it.
I did it.
I don't do it anymore.
I don't compare my kids to each other.
I can't.
And I won't ever again.

The American Association of Pediatrics (AAP) gives us guidelines as to what children should be doing at a particular age. They give us time frames. They give us ranges. It is a bell curve. Some fall right smack dab in the middle. Others to the left, and others to the right. Typically, if you are to the left of the curve, you are "behind" or "lacking". If you are to the right of the curve, you are more "advanced" or "ahead of the game".

OK, for argument's sake, I will do it.
But just this once.
Kaitlyn walked at 16.5 months.
Andrew was off and RUNNING just days after his first birthday.
Kaitlyn said her first true word around 14 months.
Andrew babbled from the womb and said a meaningful "Dada" around 9 months.
Kaitlyn can't write her name, but she can make great lines and circles!
Andrew was trying to color at 14 months.
Kaitlyn drank whole milk until her 3rd year.
Andrew was off whole milk before his 2nd birthday.
Kaitlyn sucked (still does) her thumb.
Andrew didn't and won't.
Kaitlyn ate Gerber Stage 3 baby food up until last year (and has an occasional jar as a treat).
Andrew boycotted the stuff for the real fruits and veggies at 18 months.
Do you see the pattern here? I can go on and on, but I won't. It is meaningless and just doesn't serve a purpose for me.

Kaitlyn is on the left of the bell curve.
Andrew is on the right of the bell curve.
That's it.
Done.
You won't hear me do this again! EVER!

Children don't come from a cookie-cutter mold.
They are their own person.
I would bet you anything right now that if you took 50 men and 50 women and lined them up next to each other, you would never be able to tell who sucked their thumb, who walked at which age, and what side of the bell curve they are on.

Stop yourself the next time you try and compare apples to oranges, OK?




Tuesday, August 25, 2009

Shhhhh!


It's been very quiet lately.
Almost too quiet if you ask me!
So, let's liven the place up a bit with some updates!
Kaitlyn is doing well in Kindergarten. She has adjusted without one tear and that makes me one happy Mama!
***Note: When Mama is happy, everyone is happy!
So happy that we are going to keep her private therapy going.
Oh, what was that sound? Oh that? That is the growl coming from Aetna now that they have just realized that we are going to continue with private therapy, even though Kaitlyn is in school full time.
Why fix or change something that is not broken?
Why stop therapy now when it is working?
She is making progress.
It is measurable.
Keep talkin', baby girl.
Speech is a wonderful thing, isn't it?

Monday, August 24, 2009

A Link To My Heart

This blog entry is going to be short and sweet.
Please watch the link below.
It will speak for itself.
It will educate you.
It will warm your heart.
Thank you for your support.

Saturday, August 22, 2009

An Effective Verbal Communicator



Being a nurse in a large teaching hospital in Chicago enables me to meet many people. When I am taking care of a patient, I usually start to talk casually about them, where they are from, what kind of work they do, and so on. There is always something interesting to learn about a patient or their family member or visitor in the room.
One day last week, as I was repositioning a patient in her bed, there was a medical professional journal on the bedside table that caught my eye. It was a journal about speech and language disorders, but for the life of me I cannot remember the exact name of the journal. I picked it up like it was mine and asked the visitor in the room if it belonged to the patient or to her. I was lucky to find out that the journal belonged to the visitor in the room and NOT the patient. Not that there was anything wrong with the patient, don't get me wrong. It's just that I had given the patient some Valium for the muscle spasms that she was having and she was now out cold asleep and I really wanted to talk to the owner of the magazine!
Turns out that the owner of the magazine was an SLP.
With forty-two (yes, I did say 42!) years of experience!
And....she has her PhD in the field!
B-I-N-G-O! (I really should have played the lottery that night...darn!)
So, I just sat down on the couch in the room and for the next 30 minutes talked and talked and talked with this brilliant woman about the evolution of speech issues, school districts, IEPs, therapy approaches, insurance companies, you name it we covered it! This woman was so full of information and knowledge that I wanted to punch out of work at that moment and take her out for coffee for the next 3 days straight just to listen and hang onto every word she had to say.
At one point in the conversation, I mentioned that I just wanted my daughter to be "an effective verbal communicator". (NOTE: This is a phrase which I use randomly with insurance companies or during IEP meetings. Makes people sit up and take notice. Scores big points for me, if you ask my opinion!). She proceed to tell me about a certain celebrity that is extremely well-known who also has an articulation problem: Barbara Walters. What's wrong with her speech? She is a famed TV journalist, talk show host, and author. She interviews famous people left and right. What's her problem?
She has difficulty with the /r/ sound.
Hmmmm.
I guess I never gave it much thought. But if you listen to her talk, she does indeed have problems with her /r/ sound. If she is talking slowly and enunciating all of her sounds, it is not as evident. But when she is in the midst of a heated estrogen-driven debate on "The View", you can pick it up! And then there are all those parodies on the show "Saturday Night Live" when she is referred to as "BaBa WaWa". Now it all makes sense.
So my daughter CAN be an effective verbal communicator.
My daughter can be like Barbara Walters.
Maybe we should get through Kindergarten first.

Friday, August 21, 2009

Second Day of School.................

went off without a hitch!

Whew!

Yesterday's report was awesome!
No tears.
No "moments". (This is what we call Kaitlyn's dramatic episodes that appear out of nowhere!)
A few yawns at 12:30pm.
Ate half of her lunch at 1:00pm.
Came home CLEAN in the same dress.
Pony tails still in the same place that I put them that morning.
Adjusted to her new school schedule without complaints.
I call that a great day!

Thank you, Miss Meghan, for being her teacher this year!

***A special note of "thanks" to my I.T. people for your help Thursday night. You rock!"

Thursday, August 20, 2009

BIG BROTHER.......


is watching.
and is reading.
Blogs.
MY BLOG!
I think I hit a nerve.
(insert shoulder shrug here)
I am sure there are many people out there who have many, many, many adjectives which describe me. I wear many, many hats.
I am wife.
Mother.
Daughter.
Sister.
Niece.
Nurse.
Friend.
Neighbor.
Advocate.
Pit-bull.
I am hard-working. Loving. Caring. I will admit a bit hard-headed and stubborn, yet open-minded. I am a Pisces and have a Type A personality. I am a perfectionist. I am creative. I am organized.
I scrapbook.
I blog.
And I am a frustrated parent. Frustrated with a system which we rely on for help (AKA: our insurance companies). I should not have to beg, fight, appeal, appeal again, cry, beg again, and cry some more for what I think is right and just.
I refuse to and will not apologize for anything I have said or written about my fight for what is right.
These are my feelings.
This is my platform.
My heart breaks for any parent with a child of special needs. I walk in their shoes.
My heart breaks for any child out there with special needs. I kiss mine goodnight each night.
My heart breaks for any sibling of a brother or sister who is different. I am raising one of them.
On Thursday morning, I received a voicemail message from a representative from Aetna Insurance.
I returned the call.
They took a message.
She called me back.
I explained my situation and dissatisfaction with the company and it's policies as a whole, although I did state that I was pleased with the recent events of unlimited insurance coverage that was granted to me.
Later in the conversation, I asked to whom I was speaking with.
I won't say who it was, but I will say that it is a person with status.
High ranking.
And pretty darn close to Mr or Mrs Aetna themselves!
Hmmm.
She is aware of my blog and it's contents; specifically the negative contents regarding her organization.
I hit a nerve.
I thought with my head and spoke from my heart.
I have nothing to hide.
I have nothing to apologize for as these are my feelings.
You cannot apologize for how you feel.
And I won't.
I will do it again. And again. And again.
All in the name of my daughter, my son, for what is right and just, for what they need.




1st Day of Kindergarten


Well, it's here.
And she is there.
Her first full day of Kindergarten.
By herself.
For eight full hours.
(Deep breath.................................aahhhhhhhh!)
She woke up this morning bright and early (aside from the rain and dark heavy clouds that were hanging over us) rearing and ready to go. She had her favorite breakfast of eggs, toast and yogurt. She got all dressed. Hair in pig-tails. And off she went.
No tears.
All smiles.
And oh so happy to see her teacher Miss Meghan (or as Kaitlyn calls her "Miss Reagan!). We really need to work on that initial /m/ sound.
So far, no phone calls.
No notifications about endless tears.
I hope she has a great day!
I can't wait to see her!
(Only one hour and 42 minutes until I can do that!)
But who's counting????

Wednesday, August 19, 2009

"TWas The Night Before The First Day of Kindergarten"


OK, folks, bear with me on this one. Yes, this is a take on the 'ole Christmas tale, modified for Kaitlyn's first day of Kindergarten.............



"Twas the night before the first day of Kindergarten,
and all through the house,
not a creature was stirring
well, except for one mouse
(*Mouse=Daddy, hunting for cookies and milk as he does each night!)


Her backpack was packed
by the back door with care.
While Mom scratched her head and wondered
"What do I do with her hair?"


The kids (Kaitlyn and Andrew)
were all snug in their beds
While visions of bacon and eggs
danced in their heads.


And me in my yoga pants and Dad in his office
are wondering now "What will this year be like for us?"
When all of a sudden, I had a thought
Where were those school supplies I swear I just bought?!


Away to the closet, I threw open the door
I searched. I searched. I searched some more.
Under the bed, in the corner, where did they all go?
St. Anthony (patron saint of missing things) please, my items show.


When what to my wondering eyes should appear
but my bags full of items! Yes, I need a kick in the rear!
With pencils and makers and crayons so bright
I knew in a moment this would be a long night.


More checking and arranging and checking again.
Maybe I should itemize things, where is my pen!
"Now pencils, now crayons, now paper, now folder"
Maybe a different icepack to keep her snack colder?


We started in EI and 16 months of age
Transitioned to Early Childhood without any rage.
First the Blue Bird Room, then Pony Room, then Pony Room again
Colors and matching and counting to ten.


And then in a twinkling, a voice in my head
"You're in the best school district" to me someone wise once said.
For any parent with a child of special need
They'll help her achieve goals, she'll make strides indeed!


She won't be in a "typical" classroom
rather one that's self contained
With 5 or 6 other children as well
the one-on-one setting won't be in vain.


They'll include he in non-academics
like music, circle time, and art
Visualizing her playing with other children
Truly warms my heart.


They'll work on physical, occupational, and speech.
Achieving IEP goals! Benchmarks she will reach!
This will all take time, it won't happen overnight
I can't help but have that big picture in sight.


But as any worried and proud parent would
I'll cry on this first day of days
She's grown into such a big girl now
I'll miss her from 8:30-3:30 in so many ways.


Be safe, dear daughter, work hard and have fun!
You'll play and color and dance and run.
"Handwriting Without Tears"? That I cannot guarantee.
Your teachers are there to help you be the best you can be.


So for now, sweet girl, please sleep and get your rest.
I'll make your favorite breakfast. Your hair will look its best.
With a new school outfit, you'll be cute as a bug,
And I'll be outside of school waiting for you
with happy tears and a great big hug!


Tuesday, August 18, 2009

Mirrors


Have you ever noticed the behavior of a child with a speech problem when you catch them in front of a mirror? It is truly a funny sight to see.

Mirrors are a great tool for speech therapy. Children are able to see their mouths move while sounds are being produced. Parents can be great models for these children if they get in front of the mirror as well and produce the target sound that is being addressed. Children will try to mimic the same mouth movements and sounds! Who knew that speech therapy can be as easy as sitting on your bathroom sink?!

Monday, August 17, 2009

PERFECT!

Perfect [adjective; noun]: entirely without any flaws, defects, or shortcomings; accurate, exact, or correct in every detail.

No, I am not going to say that my children are perfect (well, in my eyes they are!). But what I am about to tell you will explain a lot.

Children with apraxia have difficulty singing. They just can't do it so well. Maybe it is the speed of the song. Maybe it is because they can't get the messages from their brains to their mouths quickly enough to keep up with a song or in school with the rest of the class. Nonetheless, this is a difficult task. I am sure with plenty of therapy and progress, they will gain the ability to sing to some extent. Truthfully, I am not going to lose sleep over this one.

However, Kaitlyn did sing a song today. We always have music of some sort playing in the kitchen while we are eating. I try and fit all kinds of verbal stimulation into my daughter's day in any form possible, music being one of them. If you enable sound on your computer, you may hear one of the songs on this blog entitled "I'm Not Perfect" by Laurie Berckner. (NOTE: if you don't have any of her CDs, I would suggest investing in some if not all of them. She is great, and her music is so fun!). Well, Kaitlyn chose only two lines to sing, and she sang them right on cue:

"I'm not perfect. No I'm not."

How appropriate. She and I looked at each other and smiled.

I believe she knows that she is not like the other kids and has a disability of some kind. And I believe that she knows that she is making progress. Someday I will figure out how to post video on this blog so that you can see what she can do.

Kaitlyn, you may not be perfect in everyone's eyes.

But you are more than perfect to me.

Sunday, August 16, 2009

A Moment To Be Proud


Today, instead of blogging about the trials and tribulations of having a child with special needs, sensory issues, and the such, I am going to tell you how proud I am of my children. They were both in a wedding this weekend as flower girl and ring-bearer. Typically any parent would be proud.

And I was.

And I am.

However, I was more nervous about how I was going to get a hard-headed two year old down the aisle than my special five year old. With some reassurance from Dad and some M&M's waiting at the end of the aisle with me, they made it!

Deep sigh of relief that my two children did not mess up one nervous bride's beautiful day.

Yes, I am proud of my children.

Thursday, August 13, 2009

I. Want. Eggs.


Today was "Girl's Day Out".

Don't get to do this very often.

Daddy stayed home with Andrew, and Kaitlyn and I ventured out to her annual eye doctor appointment with her surgeon.

Exam. Dilation. Second exam. New prescription for glasses.

Seems like we do this every year at this time.

The appointment went very well, and Kaitlyn actually had a HUGE MILESTONE! There was another young family in the waiting room with two beautiful girls with dilated eyes. I guess Thursday was deemed "Eye Dilation Day".

Once Kaitlyn scoped out the family and realized that they were harmless, she walked up to the unsuspecting father and said "Hi, I am Kaitlyn". I looked at her. Then at the father. Then at her again. After praising Kaitlyn for a great sentence and for introducing herself to this stranger (we still need to work on emphasizing the "Stranger-Danger" topic), I explained to this fellow parent what had just transpired and that he was the first person whom Kaitlyn EVER introduced herself. He gave me the *knowing* look. Seems like parents of special needs children just get it.

Out of the office and on to the eye clinic where we order her glasses. This took a bit longer since Fisher-Price (nope, they don't just make toys!) does not carry the sized frame that she needed. After rummaging through some catalogs, we settled on a new brand with a pretty extensive range of sizes.

On to the shoe store. Mom needed some shoes for a wedding this weekend, so that was a pretty easy in-and-out trip of DSW Shoe Warehouse. In fact, I may have set a record for store entry, shoe selection, and purchase. Ah, long gone are the days of strolling down aisles examining shoes, trying them all on, and seeing how cute your feet looked in those strangely slanted mirrors/chairs. Nowadays, you have to know what you are looking for, grab the item, and get out of there.

Our final destination was lunch. Kaitlyn and I are both avid breakfast fans, so we choose this quaint little restaurant that is only open for breakfast and lunch. I knew what we were both going to order since we are both creatures of habit. But this time, I decided that Kaitlyn was going to place her own order. Now that I look back, I always speak for her in restaurants. Today, she was going to do it. We had a bit of time in the car, so I gave her a little pep-talk and we "practiced" ordering our meals. She did well in the car, so I was eager to see how she would perform in the restaurant. Once we were seated for a while, the waitress came over and asked if we were ready. I gave my order, then looked at Kaitlyn for her to make her selections. Here is how the conversation went:

Waitress: "And what would you like, little lady?"

Kaitlyn: "ummmmmmmm"

Waitress, waiting like a saint. I don't say a word. I just give the visual cue for "I".

Kaitlyn: "I. want. juice".

Waitress: "What kind of juice?"

Kaitlyn: "Ummmmmm"

Slight pause, then...

Kaitlyn: "apple juice"

Waitress: "What would you like to eat?"

Kaitlyn: "I. want. eggs."

Mom finally lets go of that deep breath she swears she took 20 minutes ago.

Waitress: "What do you want with the eggs?"

Kaitlyn: "Bacon. Toast."


This angel of a waitress looked at me to verify the order. She understood every word Kaitlyn said, but just wanted to make sure. This waitress must be a Mom. She may very well be an SLP, too. But regardless of that, she was so patient and understanding. I could not thank her enough for her patience and for allowing Kaitlyn to do this on her own. In fact, on the way out of the restaurant, I made a point of speaking with the manager to commend her and this woman for what she did.

Progress. I don't think Kate would/could have done this six months ago. In fact, I don't care because it doesn't matter. All I know now is that today, this day, my daughter ordered her own breakfast without me having to translate!


Tuesday, August 11, 2009

Music to my Ears!


This morning, I opened a letter from our insurance company and this is what I read:


"...based on your second level appeal, letters from Dr. __, speech therapist ____, and theattached literature, it is our decision to reverse the previous decision of denial of services for your daughter. Based on your plan, you are entitled to unlimited speech therapy with no yearly limits, provided that services are by an in-network provider...."


Yep. Unlimited visits.

Yep. I won.

Yep. I am gloating right now. I typically don't gloat, nor do I even know what gloating typically looks like. But if it is what I see in the mirror this morning, then I am doing a darn good job of it!


La-la-la-la-la-laaaaaaaaaaaaaa.


Music to my ears!

(Sitting back in my chair right now.....taking a huge, deep, relaxing breath!)


Monday, August 10, 2009

Only 10 More Days..........

until Kaitlyn starts school. I received an email from the school principal stating the events planned for the first day of school. The "typical" kids will only have a Meet-and-Greet for about an hour or so with the teacher and parents, then go home. My daughter's classroom will actually meet all day for the full seven hours.

This is wonderful! She already knows her teacher and the school setting (with the exception of the cafeteria and gym), so there isn't a whole lot of new things to learn. I am looking forward to her experiencing the full day as well. It is not like I am going to have oodles of time on my hands to shop, get manicures, and all those other things that some moms do when their kids are in school all day. Why, you ask? Andrew. Yep, we seem to forget about the little guy every so often. He and I are going to have some serious one-on-one time that we have not had because big sister is around. Besides working on his speech therapy (which we hope to bump up to two days per week), we are going to attempt potty training (eek!), maybe some swim classes, maybe a gym class, or a story hour at the library. Lunch time and nap time will have to begin a bit sooner for this guy since we have to leave to pick up big sis from school at 3:00pm (I refuse to use the bus system!).

So, for those of you out there with boys....I need some help! What do you do with a boy? Daddy is the rough-and-tumble guy in the family, but I suppose I can learn to do that, too.

I guess playing dolls and dress-up is out of the question.

Geez, I gotta get in touch with my XY chromosome a bit.

Saturday, August 8, 2009

Sprucing Up The Place

Over the next few weeks you may see some changes on my blog. Oh don't worry, still blogging about special education, some of the idiots that "think" they know my children and their needs, and so on.

I am trying to pretty things up a bit. I did find a new background for my blog, and being the avid scrapbooker that I am, I am sure I will find more goodies to add on.

In the meantime, please feel free to email me with suggestions for my blog: topics to investigate, links that you think should be added, and so on. I am always open to new ideas!