Monday, November 30, 2009
Every year on New Year's Eve, I make a wish.
For my family to stay healthy.
For my family to stay safe.
And for my children to continue to make progress in the speech therapy programs in which they are involved.
This year, that last wish will come with a sigh of relief, thanks to the new law that was signed by Illinois Governor Quinn.
To read more, click here.
Merry Christmas (early) and Happy New Year!
Sunday, November 29, 2009
I found this memo on my Apraxia-Kids website.
Just wanted to share!
2009 Walk for Children with Apraxia of Speech, "Unlock our Voice, Open Our Future" a Great Success!
Thank you for your generous support of the 2009 walk-a-thon for children with apraxia of speech! Over 2,000 walkers helped to raise awareness about apraxia in 29 states and 3 countries. With your help, we raised over $225,000 to help the Childhood Apraxia of Speech Association of North America (CASANA) continue to provide support, information, research, and education about this serious speech disorder. Your generous donations and support will help CASANA to continue to provide these valuable resources so that children with apraxia of speech can reach their full potential. The success of this year’s fundraising efforts will also allow CASANA to expand these programs in 2010.
Congratulations to the top fundraising site, Abbie’s Angels/Long Island Walk for Children with Apraxia which raised over $41,000 for CASANA’s programs and research! We will be working with the Walk Coordinator to schedule a free “Apraxia 101” workshop in their community for Spring 2010.
All of the feedback that we have received so far has been that adults and children alike had a great time at the walks and that people are already looking forward to the 2010 Walks. Despite cold and rainy weather at some of the locations (Long Island had a Nor’Easter blow though the day of their walk!), people came out in large numbers to walk in support of our children.
A special thanks to all of the walk coordinators and volunteers around the country. Walk coordinators included:
•Alaska Walk: Holly Hammer
•Baltimore Area Walk: Sarah Willey
•Chicago Area Walk: Michelle Brady Kowalski, Barbara Matt, and Holly Olmstead-Hickey
•Deposit, NY Walk: Rachel Tucker
•Fort Worth/Dallas, Texas Walk: Anne Devlin
•Iowa Walk: Stephanie Howard
•Long Island Walk (Abbie’s Angels): Jenn Forte
•Louisiana Walk: Georgina Davis and Tara Millet
•Minnesota Walk: Jessica Mevissen and Michelle Rutoski
•New Jersey Walk: Jacqueline Cohen
•Ohio Walk: Tiffany Bafford, assisted by Amy Clarke and Jennifer Tighe
•Pittsburgh Area Walk: Sue Freiburger
•San Francisco Area Walk: Monique Eurich and Monique Zammarron
•St. Louis Area Walk: Jennifer Weber
Additionally, we would like to recognize and thank our "Virtual Walkers" and their efforts! Thank you so much! Below are the top three "Virtual Walks"!
We hope to have even more national sites for next year's walk! Please contact CASANA Walk Coordinator Sue Freiburger at email@example.com if you would like to help organize a walk, large or small, in your town or city in 2010.
Our little Chicago group itself raised $37,914.00!
Kaitlyn's Krew raised $365.00!
Thank you for your support!
Saturday, November 28, 2009
to be thankful for, that is.
The tooth fairy.
I am sooooo happy that he/she will be visiting our house.
Because for the last month, I have had to deal with a loose tooth.
Not mine, but rather Kaitlyn's tooth.
Wiggle, wiggle, wiggle.
For days on end, it's been the same speech over and over.
"Kaitlyn, leave the tooth alone."
"Kaitlyn, it will fall out when it is ready".
"Kaitlyn, leave the tooth alone."
"Kaitlyn, get your fingers out of your mouth."
"Kaitlyn, leave the tooth alone."
Wiggle, wiggle, wiggle.
"Kaitlyn, leave the tooth alone."
Then, I started to get more creative.
"Kaitlyn, Santa is watching you."
"Kaitlyn, Santa won't bring presents to girls who play with loose teeth."
"Kaitlyn, leave the tooth alone."
"Kaitlyn, get your fingers out of your mouth."
Wiggle, wiggle, wiggle.
Then my demeanor changed.
I was sick of the whole loose tooth issue.
"Kaitlyn! That's it!"
"Kaitlyn, do you want to sit in the naughty chair?"
"Kaitlyn, if you touch that tooth again you will sit in the naughty chair."
Wiggle, wiggle, wiggle.
And then it happened.
Blood on her face.
Said tooth now on floor in bathroom.
Thank goodness that is over.
Oh, but it isn't.
Because now, we have to play with the fleshy crater that once housed the tooth.
With her fingers.
And her tongue.
And a toothbrush.
And a spoon.
Kaitlyn chooses to pick a holiday to loose a tooth.
This is tooth #3.
Tooth #1 came out the day before Halloween 2008.
Perfect, since she wanted to be a witch that year.
Tooth #2 came out somewhere within the 45 minute drive to my parent's house on Christmas Eve 2008.
I say "somewhere in the 45 minute drive" because it was in her mouth when we loaded her in the car and it was gone when we arrived at our destination.
Couldn't find it anywhere.
I assumed it was in the belly.
But, seeing that her baby teeth are the size of grains of rice, I was not about to sift through poop to verify that it took the southern exit.
Now, tooth #3 bit the dust the day after Thanksgiving 2009.
And so the Tooth Fairy arrived this morning, much to Kaitlyn's delight!
And inside the little pillow was a crisp dollar bill.
Much to Kaitlyn's delight!
As she turned to put the dollar bill in her pink piggy bank, she put her hand to her mouth.
Oh no, here we go again.
Friday, November 27, 2009
That is my son, Andrew.
1 of 19,000.
Would you just look at those baby blues?
1 in 19,000 who could be losing his Early Intervention speech and language services due to the money shortage, bureaucracy, and crooks who run the State of Illinois.
Due to the "budget crisis" as they say.
I am sure that employees in Springfield aren't losing their services.
This story made our local news station on Wednesday night.
To hear the latest sob story, click here.
Please bear with the delay and ignore the 30 second promo prior to the video's start.
I need to find out what the next step will be.
Right now, he is receiving services from a private therapist in a clinic which also supports EI certified therapists.
Gotta get on the horn with our private therapist about this.
I am sure that I am stressing about nothing.
Andrew will be "graduating" from Early Intervention in August 2010 when he enters the Early Childhood Education program.
We just need to get by for the next nine months.
This, too, will all work out.
It always does.
Thursday, November 26, 2009
A day in which we give thanks for so much which we have.
I am thankful for my family.
The home that we live in.
The schools which our children attend.
The physicians and other health professionals which tend to our children and their needs.
And although I want to express my gratitude for all of this, I also want to extend my most sincere thanks to and for all of you.
The readers of my blog.
Whether you follow me publicly or privately.
Whether you read on a daily basis, once a week, or periodically.
To those of you that I know personally read this blog: Leah, Michelle, JoEllen, Jill, Corrie.
To those of you that appear EVERY DAY on my MapLoco tracker that I don't know but would really like to talk to one day: Slidell, Louisiana and Bolton, United Kingdom.
I could not let you go unnoticed.
To those of you who have anonymously responded to my posts.
To those of you who have forwarded the link to my blog to someone that you know who just might find something that I have to say, well, useful.
My topic is not always easy.
My blog is, at times, filled with days of frustrations.
Special needs and special education are not text book by any means.
But seeing the more than 2,000 unique viewers who have visited my site since my first post in February 2009 gives me the motivation to keep writing.
And if I can make someone laugh.
If I could help someone with an IEP struggle.
If I could help someone with their pending insurance denial battle.
If I could teach someone a new technique to help their child master a sound.
Then I did what I set out to do.
To let someone know that the road of apraxia and special needs is not always a lonely one.
From the bottom of my heart, thank you for listening to my words with your heart.
Wednesday, November 25, 2009
A couple of weeks ago, Kaitlyn was given a homework assignment to tell what she was thankful for. She could use words, pictures, cut-outs from magazines, whatever she wanted to use to convey her message.
It is amazing what a six-year old girl is grateful. Her is the list of six "things", in no particular order:
2.) Elmo (specifically, Sesame
3.) Fisher-Price Little People Music
This cracks me up! At least I was the first thing she mentioned.
But the other items mentioned make me smile.
It's amazing what goes through a young mind.
Tuesday, November 24, 2009
Well, here is my second installment of my "Tuesday Top Ten". Play along and copy/paste the above picture to your own blog and then list ten things which happened over the past seven days which you may / may not want to relive. They can be funny, strange, whatever you want them to be.
#10. Both kids got the H1N1 preservative-free vaccine last week.
#9. I, along with 7 other nurses at work, got to wrestle a naked, suicidal, six-foot four inch two-hundred fifty pound man from using his head to shatter a window so he could jump. I don't recall THAT being in my job description?
#8. I saw Santa all decked out at the mall last Thursday and he looked so bored.
#7. Thank goodness Kaitlyn's new word was NOT of the vulgar type.
#6. I am getting a Thanksgiving bonus!
#5. I redesigned my blog for the millionth time.
#4. Seeing that I am not satisfied with the look of my blog, I have enlisted some help and am currently on her waiting list. Jennisa's work is amazing and you can see it here. I can't wait for the finished product!
#3. Kaitlyn made an interesting list of what she is thankful for. You will be able to read all about it in Wednesday's blog entry.
#2. Kaitlyn laid in bed with me, sobbing the other night, saying "Mommy stay home". She was referring to me having to go to work the next morning. How could something so heart warming be so heart breaking at the same time?
#1. Today, Tuesday, November 24, 2009 is mine and Mark's 8th wedding anniversary. For richer or poorer, in sickness and in health, with all of the ups and downs of life, and throw in two special, special-needs kids to the mix. I wouldn't have it any other way! Happy Anniversary, Mark. Thank you for being everything to me!
Monday, November 23, 2009
Please don't let this be true.
Suddenly, I feel so nauseated.
This morning, as we were getting ready for school, Kaitlyn decided to share a new word with me.
Please don't tell me that I just heard what I think I heard.
"Kaitlyn, what did you say?" I asked in a very calm and inquisitive voice.
"F*ucker", she replied.
Where is my emesis basin?
Suddenly, I want to puke everywhere.
How do I explain this one to people?
What if she says this at Thanksgiving dinner...in front of my in-laws, no less?!
Can't make excuses for this one since it is clear as a bell.
So off to school we go.
As I exit the car with Kaitlyn, I see her teacher walking towards us.
I need to share this with her in a way the little ears won't hear it and repeat it.
"Um, Meghan, Kaitlyn has a new word."
"What is it?"
I quietly say the word as I mouth it, and I swear Ms. Meghan's eyes were about to pop out of her head, her jaw on the ground.
Then, to my pleasure, Meghan says:
"Oh! Freckle! She is saying freckle!"
Yep, they sound alike.
Oh, thank you, Jesus!
I thought I had several more years before I would have to deal with obscenities and vulgarities.
At least until the teenage years.
You know, for some reason, I have a taste for a Wendy's cheese burger.
Yep, that feeling of nausea has since been replaced with hunger and relief.
Saturday, November 21, 2009
After all these years of struggling with speech and language.
After all those hours of speech therapy.
After all those emails and appeal letters to insurance companies to pay for the therapy that she so badly needs.
Countless IEP meetings.
Countless emails to teachers and SLPs.
You name it, we are doing it or have done it.
My little girl is starting to put it together.
The words are starting to come out.
She is trying so hard and is making great strides.
We have supported her and coached her from day one.
So now, after all the heartache and battles, why would I consider telling her to be quiet?
We. Are. In. Church.
But I do NOT tell her to be quiet.
I ask her to use her "Church voice".
This translates to a "quiet voice".
Yes, I get some looks.
You know, the looks that resonate "Why don't you sit in the quiet room?" type of looks.
Well, we don't need to sit in the quiet room.
She isn't loud or talks non-stop in Church.
Most of it is Church-related: the priest, the baby sitting in front of her, or how many songs are left until we leave.
Then there is her version of the "Our Father".
She tries so hard to keep up with the congregation.
Bless her little heart.
So to all those people around us who think that I should tell my child to be quiet.
The answer is simple: no.
After all the therapies.
After all the drilling.
After all the practice.
After all the fighting with insurance companies.
I only have two things to say:
Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these."
When Jesus saw this, he was indignant. He said to them, "Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these. 15I tell you the truth, anyone who will not receive the kingdom of God like a little child will never enter it." 16And he took the children in his arms, put his hands on them and blessed them.
With Jesus, Matthew and Mark on my side, I have a great defense.
Let her come to me.
Let her voice come to me.
Another field trip.
This one will be in mid-December.
Whoa! That is less than a month away.
Geez, time sure is flying.
Anyway, Kaitlyn's class will be hopping a bus once again and heading to an area college campus which is performing "The Nutcracker".
And McDonald's for lunch afterwards.
Sounds like a great time!
As you may recall, she missed her first field trip to the pumpkin farm on October 21st since she was sick that week.
However, since she was feeling so much better later that morning, we were able to drive up there and meet her class for a while.
Turned out to be a gorgeous day that day.
She didn't get to ride the bus, though.
This time, she will.
But I hope her whole sensory-issue thing doesn't get in the way.
Remember the Mother's Day Weekend Girl's Getaway to see "Elmo Grows Up"?
Yep, that disaster!
I think I am going to have to do a lot of pre-field trip prep work.
Gotta talk up ballerinas and dancing and so on.
Looks like I will be breaking out the Nutcracker CD today.
Praying that this one goes better than the last theater experience.
Friday, November 20, 2009
No, this is not something that I just randomly say now and then.
In fact, I don't think I have ever said this.
Well, maybe in eighth grade when I was a cheerleader.
Anyway, I just wanted to pass along a great link.
For those of you who have been on the special-needs road for some time now, you probably already know about this link.
For those of you who are just starting out on the crazy road, this might be helpful to you.
It is a company called Super Duper Publications and they have the best catalog in the world for just about anything special needs.
From speech problems to autism to sensory integration issues, it is all here.
The website is a bit busy and sometimes a tad hard to navigate, but if you scroll to the bottom there is a link where you can order a catalog.
Or, I'll make it easier for you and you can order it right here!
Happy reading, and happy shopping!
Thursday, November 19, 2009
For those of you who are new to my blog, you obviously don't know how many times this blog has "changed clothes".
For my frequent flyers, you were probably wondering if you stumbled across a different blog by mistake.
No, it's still me.
Still talking about my kids and their special needs.
Still fighting insurance companies.
So let me know what you think?
I need to change this around to a 3-column blog.
I just don't know how.
Hang in there and please, pardon my dust!
My. Teacher's. Name. Is. Ms. Davis.
And clear as a bell.
This is what Kaitlyn told me the other day as we were driving home from school.
Granted, her real teacher's name is Miss Meghan.
But Ms. Davis is also a teacher within the school.
But ask her to say it again, and it won't happen as clear as the first time.
That is what apraxia is all about.
So many times a child will spill out an amazingly clear and grammatically correct sentence or phrase.
But ask them to do it again, and they sputter.
This is one of the frustrating parts of apraxia.
You know that there is a little voice in there.
You know that there is the potential for that little voice to be heard.
However, those damn pathways aren't the same from one time to the next, so you go from a correct and clear sentence to one that can't be replicated.
So on we go with speech therapy.
On we go with more drilling and practice.
On we go to straightening those pathways and getting all of our words out, each time, every time.
It's only a matter of time.
Wednesday, November 18, 2009
Yes, as I have previously mentioned, there is a language explosion going on in this house.
And while it is wonderful to see and hear this from both kids, it has its downside.
What, you ask?
What can be so bad that I have to call it a "con"?
What could I possibly have to complain about?
After all, isn't this what I have been praying and working and fighting for.
Well, it is this simple.
There are just so many new words and so many new sounds that
1.) I have a hard time keeping up, and
2.) My lack of understanding is causing them some frustration.
More so from Kaitlyn than from Andrew.
Andrew is pretty laid back, yet persistent with his new sounds.
He is smart enough to physically show me what he wants or what he is saying.
For example, the other day he kept saying "Deek".
For the life of me, I could not figure this out.
Then he walked to the refrigerator, opened the door, and pointed to the lemonade.
The light bulb went on: deek translates to "drink".
Kaitlyn, on the other hand, puts multi-syllabic sounds together which proves to be a tad more challenging.
We have had a few incidents as of late which found Kaitlyn perseverating on one word over and over.
It gets to the point where she and I both get frustrated with the whole situation.
She, however, does not always bring me to what she is saying because a lot of what she is trying to tell me is occurring in school.
Can't just run over there, can we?
I have learned to write these new "words" down phonetically, keep them in my purse, allowing me to whip out this list when we see her teacher so I could pick her brain about what I am hearing.
That was a long sentence.
I am sure it is loaded with grammatical errors and could also be a run-on sentence.
I was just trying to make a point.
So that's what the "con" is all about in the title of this post.
I am not submissive by any means.
I conform to laws which I determine to be necessary and appropriate: rules of the road, stopping at red lights, laws that govern nurses, my job description and policies at work.
I think you get the picture.
I let very few people tell me what to do.
And heaven help those who think they can try to tell me what to do and get away with it.
But, I was submissive on Tuesday.
I gave in.
I had both kids vaccinated with the H1N1 vaccine.
I know, I know, I said in a previous post that I wasn't going to do it.
I wasn't going to give in.
I wasn't going to buy into the media frenzy and media pandemic that was simmering.
But after much prayer and soul-searching, I gave in and got them vaccinated.
Had I let my fears govern my thought process and chose not to vaccinate, and if something dreadful or tragic happened, I would have no one but myself to blame.
So I did it.
Don't do that either.
Now this topic goes back to the H1N1 vaccine, too.
I didn't conform like millions of others did.
I didn't wait in lines that wrapped around buildings.
I didn't stand outside in rainy, windy elements.
I didn't spray live viruses up my children's noses.
If I was going to conform with the masses, I would do it my own way.
On my own terms.
Every week, I persistently called our pediatrician's office, inquiring about their stock of vaccine.
Every week was the same answer: they didn't have the vaccine and did not know when it was to be available.
Then, on Monday evening the call came in.
They had the vaccine.
Fed Ex or UPS was kind to them and dropped off an early Christmas gift.
But if I was to do this, it would be on my terms and my terms only.
The kids were NOT to get the nasal spray form.
The kids were NOT to get the vaccine from a multi-dose vial.
The kids were ONLY to get the preservative-free, pre-drawn form.
So after arguing with the office chick who calls herself a nurse when in fact she is not (ahem, a med tech) I got my way.
Both kids did NOT receive the nasal form.
Both kids did NOT receive an injection from a multi-dose vial.
Both kids DID receive the preservative-free, pre-drawn syringe of monovalent influenza vaccine.
And I did NOT premedicate with Tylenol as the CDC advised parents not to do so.
OK, so I conformed with this one thing.
Call it a moment of weakness.
But they did receive a dose of Tylenol about three hours after the vaccine.
And another dose after their breakfast this morning.
This, by far, has to be the longest post ever.
But I had a lot to get off my chest and talk about today.
I promise...tomorrow's post will be short, sweet, and to the point.
Thanks for hanging in there!
Tuesday, November 17, 2009
OK, so I thought I would jump on the bandwagon and pick a day that I would dedicate every week to a specific post topic.
After wracking my brain for all of about, oh, let's see....5 minutes, I came up with this!
So every Tuesday, from now on, I will label my post as my "Top 10 Tuesday!"
Feel free to join me.
Just copy/paste the Top 10 picture as your picture on Tuesdays and type ONLY 10 things from the previous week that you would like to review or relive!
They can be anything you'd like: ten great moments from the last week, strange happenings, revelations, you name it!
It's your list, so don with it what you want.
So here we go.....
Drum roll please................
(insert drum roll sound here)
Pattie's Top 10 Tuesday:
#10. Having a great Parent-Teacher Conference on Kaitlyn last week.
#9. Hearing Andrew make the /m/ sound successfully.
#8. Listening to Kaitlyn string four, five, and six words into a sentence.
#7. Receiving a confirmation letter in the mail that Aetna will continue to be our
insurance carrier and that they didn't dump me yet for being a pain in their
rears (um, which I have no intention of stopping people!)
#6. Enjoying a late Indian-Summer with the kids this last weekend!
#5. Finishing just about everything on that darned to-do-list of mine.
#4. Being able to get away last Friday evening for a night of food, drinks, fun,
conversation, and scrapbooking with my next-door neighbor buddy.
#3. Having a stranger in a store tell me to go home and take a nap when she asked
me a question and I stumbled over my words as I held an extra large cup of
Dunkin Donuts coffee and apologized for being so sleep deprived. Weird.
#2. Making Andrew laugh so hard that he got the hiccups.
#1. Having both my kids simultaneously scream "HI!" and run to me, knocking me
over with hugs like the Chicago Bears front line.
Monday, November 16, 2009
Saturday afternoon was a treat.
An absolute pleasure.
Being mid-November, we are used to and expect cloudy days, colder temperatures, and brisk winds.
But we were blessed with a treat of 63 degree weather and bright sun.
A perfect equation for fun.
A perfect time to.......
JUMP IN THE LEAVES!
Bathe in a mound of crunchy rainbows!
Act like a silly boy,
And for a girl to pretend that she was a monkey!
Of course, it was a day where we forgot about apraxia and other speech delays.
We put speech therapy and drilling on the back burner.
And we all just acted like kids!
Sunday, November 15, 2009
Pretty neat, if you ask me!
Take a look by clicking here
I am going to propose something like this to Kaitlyn's school speech therapist and occupational therapist.
Hey, it can't hurt, right?
Either that, or I will be going out and buying Mozart CDs left and right!
Saturday, November 14, 2009
We are not talking small spurts of new words and sounds.
It's more like the 4th of July around here!
Kaitlyn is becoming quite the little jabber-jaws, and Andrew's mouth moves nonstop.
Kaitlyn is stringing multiple words together into small, short sentences.
Andrew is imitating more words that I say (um, which is a mental note to me to be careful in my choice of words, especially when I am driving!) and talks constantly in his gibberish.
Kaitlyn's recollection of past events also appears to be evolving before our eyes, as evidenced by telling stories of places she visited as long as 6 months ago (see my blog entry on Elmo!)
Andrew has learned that he can request when and what to eat.
Speech therapy is funny.
It takes a lot to measure progress being made.
It is not instantaneous.
Rather, you need to track the trends over an extended period of time.
Both kids are truly benefiting from the services which they are receiving.
Add that on top of their age and maturation.
Add that to the daily exposure.
Add that to the school programs which they are both involved.
Add that to the constant drilling and practice at home.
And you have the most colorful display of reds and greens and yellows and twinkling whites.
A fireworks display of speech and language you never possibly could have imagined to see and hear in my house.
I love a loud house.
And lately, everyday is the 4th of July!
Sent via BlackBerry by AT&T
Friday, November 13, 2009
What, you ask?
Well, in a mere 7 weeks since Kaitlyn's private SLP conducted a random speech sample, Kaitlyn's PCC (percent correct) has jumped 8 percent!
I mean 8.7% to be exact!
Peeps, this is huge!
In September 2009, her score was 61.8%.
The exact same test was administered with the same bank of 125 words.
Now in November 2009, she is at 70.5%.
There is a margin of error of +/-4%, so this is a true success!
And to think the fools at Aetna have brainwashed themselves to believe that speech therapy is not medically necessary for children with speech disorders.
And to think that the fools at Aetna don't believe that her successes are measurable.
No, make that 8.7 percent.
Basic math, Aetna.
You should have learned that in elementary school, people.
Oh, you skipped school that day?
Sucks to be you right now.
Love it when a six year old has the final word:
Sent via BlackBerry by AT&T
Thursday, November 12, 2009
And a new perspective on Kaitlyn.
And how I view her schooling.
And how I will let go, so to speak, and hand the reins to her.
For she knows what she is doing.
And she is thriving.
Gone are the mornings that I lay her clothes out for her.
From this day forward, she will choose what she wears.
Gone are the mornings that I prepare breakfast for her.
From this day forward, she will "place her order".
Gone are the mornings when I hurry around to pick and pack her mid-morning snack.
From this day forward, she will be the one to pick and pack.
Gone are the mornings when I choose her lunch menu.
From this day forward, it is something that she will tell her teachers at school.
This is going to be so very hard for me.
I am a control freak.
Add to that a Mom.
Add to that a Mom of a special needs child.
That, my friends, is a control freak on speed!
No, I don't indulge in illicit behaviors, but this Mother Hen does what she does for her chicks.
All Moms are like this (um, to an extent?, right?
We are nurturing.
We are watchers.
We are protectors.
But we (OK, maybe just I) are barriers sometimes.
I have been inhibiting, restraining without even realizing.
There is a little butterfly in that cocoon.
These is a little butterfly who wants to spread her wings and show me what she can do.
And I have been too busy doing my job to actually do my job.
So from this day forward, she will have her voice.
And she will have her wings.
And it is going to be very hard for me,
but for Kaityln,
it will be a new day.
Wednesday, November 11, 2009
Like Haley's Comet, a unicorn, or a double rainbow, it is a rare occurrence.
There isn't much in life that can silence me.
Many have tried, and most of them have failed.
Tonight, I am speechless.
We had an amazing Parent-Teacher Conference Tuesday evening.
I had come into this conference with a preconceived notion of what was going to be said about Kaitlyn.
They were all there.
Speech Language Pathologist.
Adaptive Physical Education instructor.
It was a setting that I have come to know oh so well.
Our preschool experience jaded me to view these gatherings as an "us versus them" formal meeting.
But tonight, I was speechless.
We all sat in tiny pint-sized chairs.
The atmosphere was relaxed.
They offered great feedback.
We asked questions.
And at times, I was speechless.
To hear that my daughter sings the "Morning Calendar" song.
To hear that my daughter raises her hand and says "Kaitlyn first" when a volunteer is requested.
To hear that my daughter is actually used as a speech and language role model for other peers in her class.
At times, all I could do was sit there. Speechless.
To hear that she knows her morning entry routine without the use of a task strip.
To hear that she does yoga with OT, works so hard on the balance beam with PT, is using multi-syllabic words with her SLP, and follows multiple commands to successfully complete an obstacle course in Adaptive PE class.
And I sat there. Speechless.
To hear that she has a special friend in the general ed Kindergarten class that has taken Kaitlyn under her wing.
To hear that the two of them are inseparable at recess.
To hear that she saves a seat for Kaitlyn in the cafeteria everyday.
To hear that Kaitlyn actually talks with this special little friend in the general ed Kindergarten class.
Still sitting there. Speechless.
To hear all this.
On that night.
In that room.
Sitting on those tiny pint-sized chairs.
Truly. Made. Me. Speechless.
I don't know what more I can say.
It's hard to talk, that is, when one is speechless.
Tuesday, November 10, 2009
Is that even a word?
I'll have to check into that one.
Anyway, my daughter, the quiet one with CAS, has really started to turn the corner when it comes to conversations.
With strangers, too!
Today, I took both kids to get haircuts....FINALLY!
They were looking rough and I was looking like quite the mad Mama.
So off we went to the neighborhood friendly child haircut place.
Kaitlyn decided that she had to bring her baby doll with her.
That's fine, but she is bald, and wasn't in a need for a haircut.
Nonetheless, baby doll brought baby doll with her.
Once inside, she proceeded to show and tell everyone about her baby.
She approached the young girl at the counter.
"Baby is crying!"
No, Kate, baby isn't crying.
She seems to tell everyone that.
I wonder what people think about me, then, if Kate is telling everyone that her baby is crying???
Then she walks up to a man who was currently wrestling his 3 year old son into the chair for his haircut.
"Baby is crying!"
He says something to her, but I didn't pay attention as I was trying to drag her away from the boy's flailing arms.
Then, she takes advantage of this poor, tired looking new Mom trying to nurse her baby.
In front of the window, no less.
I stopped that interaction really quickly.
Didn't need to go down that road as to why this lady was feeding her baby like that.
Not that I have issues with breastfeeding because I don't.
I was the type that whipped it out anywhere and fed my babies on demand.
I was discrete about it, but I could walk around with a nursing top on and feed my babies as well as entertain a half dozen guests in my house and serve appetizers.
Now that's what I call multi-tasking!
OK, I got off the subject.
Now where was I?
Oh yeah, Kaitlyn talking to everyone.
So when it was her turn for the haircut, she seemed to have it under control.
I could hear her in the distance as I was trying to get Andrew away from the television set that I swear he was re-programming.
I think the kid is going to be an engineer like his father!
But Kaitlyn was chit-chatting away with Bekki, our favorite stylist, choosing the video she wanted to watch, and yes, telling Bekki that her baby was crying.
It may not sound like much, but this is huge for her.
Baby steps, Mama.
Your baby is really starting to take her speech baby steps.
Monday, November 9, 2009
are tomorrow evening.
This should be interesting.
A chance for me to address both the positive and negative noted on the progress reports which were sent home last week.
Not that there were a lot of surprises or a lot of negative indicated on those sheets.
I am sure there are going to be no surprises at the conference.
The team is so good at keeping in touch with us and daily progress reports.
I feel great about this.
She is in a good district.
No, a GREAT district.
We are so blessed and fortunate.
She is getting the services that she needs.
I see progress everyday.
Deep down, I know it is going to be a great conference.
Sunday, November 8, 2009
Sometimes, I wonder if both of my children know that something is wrong with the other's speech capabilities.
Kaitlyn has moderate to severe apraxia.
Andrew has moderate delay due to his oh-so-numerous ear infections.
Sometimes, I sit and watch them interact.
Sometimes they are silent.
They don't fight.
They don't argue.
They share (well, most of the time they do!)
Sometimes, they say a few words to each other.
They actually have their own communication that I don't quite understand.
But maybe I am not supposed to understand.
Maybe that is just between Kaitlyn and Andrew.
I have noticed that they don't get frustrated with each other.
At the dinner table, when Andrew is trying to convey his message to me about what he wants to eat next and I just can't figure it out, Kaitlyn gives him this empathetic look like "Dude, I feel your pain."
And when Kaitlyn tries to hard to make me understand a new word and I just don't get it, she starts to whimper and say "me-mean" (translation: do you know what I mean?)
And if she get emotional, so does Andrew.
He pouts, whimpers, and the largest tears that you have ever seen well in his eyes.
They look at each other, knowingly understanding one another.
It is not the bond that I dreamt for my children.
A bond of not being able to effectively verbally communicate.
But it is a bond.
And it is strong.
And I don't think that anyone or anything is going to be able to break what is growing between these two children of mine.
They are amazing kids.
They are truly gifts.
And I believe that they were chosen for each other.
Saturday, November 7, 2009
My level of anxiety went back to baseline.
However, it was from the County Public Health Department and it states that my child (Kaitlyn) has been considered to be one of the at-risk children for developing complications resulting from the H1N1 flu.
She doesn't have any of the health conditions that they have been talking about (diabetes, heart or lung condition, asthma, etc).
But this form letter indicated that "a neurological or neurodevelopmental condition" was considered a health condition.
Because my child has difficulty with speech and language?
Because my child cannot write her name perfectly yet?
After a few phone calls to the school nurse as well as the county health department, it turns out that ALL children in the special education program in our school district got such a letter.
And, all members residing in the same household as the at-risk child are encouraged to be vaccinated, too.
OK, well that makes a bit more sense now.
So I call the county health department to make the appointment and was informed that they do not have the preservative-free vaccine.
Neither Kaitlyn nor Andrew will be receiving that vaccine.
Under my terms, if they are to receive the vaccine, it must be the thimerisol-free form.
That is all they have ever received.
And, I won't let them get the nasal form either as that is a live virus.
So again, there is unnecessary cause for panic here.
I will just sit and wait for someone to get the correct vaccine available.
Since there seems to be a lot of that going on around here.
The government is really pissing me off lately.
"Go get vaccinated!"
"We want to vaccinate as many at-risk individuals as possible!"
But there is a vaccine shortage.
And I refuse to stand in line for 4 or 5 hours for a vaccine.
Only to risk my child getting pneumonia from standing outside waiting 4 or 5 hours for the vaccine.
That's why I will continue to sit here.
And I really hate sitting around just waiting, you know?
Sent via BlackBerry by AT&T
Friday, November 6, 2009
I had no clue that our Easter Seals division in our area offered this!
You can only imagine my amazement when I saw this!
Kaitlyn rides a bike very well.
She has been riding a bike proficiently since the age of 18 months.
It is a great physical therapy exercise for her.
I even get to exercise when I run behind her bike as we travel through the neighborhood.
That's a bonus, seeing that our family gym membership card is collecting dust lately.
However, she is an accident waiting to happen as she rides her bike.
There are times that she "zones out" and watches everything BUT the sidewalk in front of her.
Let's say...a bird flies by.
Someone is watering their flowers.
The smallest thing will distract her.
She hasn't run anyone over.
She hasn't run into a parked car.
But she has definitely worn out her training wheels on her bike.
They are down to the plastic!
Here is a link to the "Lose The Training Wheels" site.
The 2010 schedule is not yet available, but I can assure you that I will be watching and waiting for it to come out.
Yes, I will be all over this one!
Thursday, November 5, 2009
I have been lazy, and busy, and hoping that I could stretch this out for another week or two before the Thanksgiving holiday, but I don't think I can anymore.
Pretty soon, Andrew is going to be wearing Kaitlyn's head bands to keep his haor out of his eyes.
Well, I may be over-exaggerating a bit, but he is getting quite shaggy.
We do have a great place near us that caters just to kids.
They can pick their own video to watch.
They can play a video game.
They can sit in a car or airplane instead of a chair.
Kaitlyn does very well with haircuts, which really surprises me.
Leave it to my sensory child to be fine and the non-sensory child to have issues.
Andrew, however, is another story.
I don't know what is worse: the tears and pleas for "muh-muuuuuuuuuuuuhhhhhh!" or the snot that pours out of his nose from all the crying.
Why watching old clips from our local news station, I came across this great place.
I wonder if it would work for Andrew?
Then again, the thought of chasing him through a store with scissors brings back some bad memories of childhood lectures that I received.
Let's not go there!
Watch this video for more!
Wednesday, November 4, 2009
Hearing Your Silence
(For All Children with Childhood Apraxia of Speech)
by Donald Robin, Ph.D., CCC-SLP
We don't understand
when we hear your silence
We cant see behind your frustrated eyes
when you plead for our attention
We are unable to feel your awkwardness
when you try to speak and the wrong sounds emerge
We cannot be inside you to will your tongue to move
when it struggles to find the roof of your mouth
We don't understand the fear that consumes you
when you are on the playground when you should be having fun
We are not privy to your brain that creates a world of words
only to have your muscles stop their meaning
We do not hear your mind communicating freely
only to have us look quizzically and ask for repetition
We cannot sense your joy at moments of clarity
only to have it rapidly disappear again and again
We do know who you are
when you look into our eyes
We can hold you tightly
when your fists clench and tears fill your vision
We will struggle with you each day and night
when you practice your speech sounds with great deliberation
We are proud of your trying
when we might just give up
We share with you your pain
when your mouth is tired and slow
You know that we will love you
when you are little and when you grow
You know that we will be there for you
when all seems dark and cold
You know that you are special and what you want to say
You know you are our children and who you are each day
You know your world is full and how to find the way
You know we hear your silence
You know, we hear your silence
You know we hear your silence
Tuesday, November 3, 2009
No big surprise here.
Well, I take that back, because Kaitlyn did better than I expected.
Not that I don't want her to do her best.
Its just that I have learned to aim lower with my expectations so that I can be elated when I hear that she did so well in a certain area.
So when the reports came home in her backpack, I was pleasantly surprised!
Granted, these are very elementary skills that they are working on: counting, letter recognition, left-to-right progression, and so on.
My daughter has these concepts down!
Then there was a separate form that had check marks indicating "satisfactory" or "needs work". I had to laugh because it was noted that she needs to work on:
1. Practices self control.
2. Works and plays cooperatively with peers.
3. Listens attentively.
OK, let's break this down.
As for #1 and #3, we all have to remember that she is a sensory child. So that fact that she is being knocked on those two items is not a concern one bit for me. As for item #2, I am not sure what the other four children are like in the classroom and if they are suitable playmates for Kaitlyn. Being in a self-contained classroom, there is a mix of children with physical, cognitive, and emotional issues. So am I worried about #2?
Now, I have some concerns here.
As I continued to peruse these eval forms, I did note that they were completed by the general education Kindergarten teacher.
Why wasn't her PACE Teacher involved in this?
Or was she and it just wasn't indicated on the form?
And, how was this eval completed?
Was it timed?
Was Kaitlyn prepared for this evaluation?
Was it modified for her?
What time of day was she tested?
She really seems to go into a carb crash and nap mode after lunch.
So.........if this testing was done by a strange person, in a strange environment, at the wrong time of day, then I have one thing to say:
Translation: that is me blowing strawberries at you!
Well, not you, my readers, but rather the General Ed Kindergarten teacher.
Nonetheless, I am pleased with my daughter's progress and how well she is evolving in her new Kindergarten environment.
We will be having Parent-Teacher conferences next week, so I will address these concerns at that time.
In the meantime, I will continue to relish in my daughter's successes!
Monday, November 2, 2009
Do you know who is filling your prescriptions?
We all think that it is the pharmacist, right?
However, most pharmacies are staffed with pharmacy technicians or pharmacy assistants, and that is truly a prescription for danger.
I understand that pharmacies are busy and everyone needs help.
But there is a huge problem out there and it could spell disaster for someone some day.
You remember what happened to the Quaid infant twins, right?
I had a problem with one specific pharmacy several months ago.
When Andrew was averaging one ear infection every three weeks, we were constantly at the drive thru to pick up yet another antibiotic.
On one occasion, the prescription was to last for seven days.
Funny, but I was holding an empty bottle after day number five.
Then it happened again.
And finally a fourth time.
Now, being a nurse, I draw up liquids in syringes all the time.
Numerous times a day.
I know what 5cc's is.
I know what one-half teaspoon is.
Finally, I got fed up, aggravated, and worried and went right to the pharmacy where all of our scripts are filled.
Turns out, a tech is allowed to reconstitute a powder medication into a liquid.
Who was checking that this tech was reconstituting with the correct amount of liquid?
From that day forward, I had my children's file at this specific pharmacy known for having a site on every other corner all across the country FLAGGED that ONLY a pharmacist was to mix my children's medication.
But if I was not paying attention, I would not have noticed that one rude tech was going to take it upon herself to reconstitute my daughter's latest antibiotic.
When I asked if she was a pharmacist, she said no.
After I proceeded to remind her that Kaitlyn's file was flagged and only a Registered Pharmacist was to mix her medication, all she could do at that point was roll her eyes.
Let me tell you, she is lucky that we were in a hurry to get home and eat a very late dinner because I was this close to hopping over that counter to pluck those rolling eyes out of her ugly red head!
And as she handed the bottle to the pharmacist, she proceeded to assist another patient who "has a really bad cough and congestion and takes Lisinopril for high blood pressure".
That is sooooo dangerous: both the man's symptoms with his hypertension and this broad thinking she can give out medicinal information.
I should have said something, but I didn't.
I just hope that man is OK.
After further investigation, I found out that these pharmacy technicians/assistants typically receive on-the-job training.
No real formal education.
And all they need is a high-school education and a felony-free record.
Click here to see more.
Further research found this information:
"Illinois Mandates Certification
Beginning on January 1, 2010, within 2 years after being employed as a registered technician, a pharmacy technician must become certified by successfully passing the PTCB examination or another Board-approved pharmacy technician examination in order to continue to perform pharmacy technician's duties. This requirement does not apply to pharmacy technicians hired prior to January 1, 2008."
Check what your state requires.
The following video is truly heartbreaking.
All because of an error that never should have happened.
My point of this post is to educate you on yet another way you can advocate for your child.
Many readers of my blog have children who take medications on a regular basis for one reason or another.
Here is a great site where you can verify for your own peace of mind that the pill your child is swallowing everyday is indeed the one that was prescribed by your physician.
Know your pharmacist.
Know who is working behind that counter.
Don't be a timid mouse.
Question, question, question.
And make sure that you are questioning the pharmacist, not some uneducated or unlicensed tech.
That is why they call it "Patients Rights".