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Thursday, December 30, 2010

The Key~


I have been praying that I would find a way to fund all of these therapies that Luke needs in order to be able to speak. 

And I have been having LOTS of conversations with God.  And I feel like he is leading me...I keep going back and forth with how can we afford this extra therapy, applying for grants, searching for help, searching for ways, searching for an answer...

I woke up early on Christmas Eve and was lead to a blog that ended up having a really good message and they were raising money with giveforward.com 

Because some people have asked if we would share our story with others and set up an account online, I did a little research and decided to give it a shot.  So, I launched the Unlocking Luke's Voice page on the Give Forward site.

http://www.giveforward.com/unlockinglukesvoice 

Although we haven't gotten any donations yet, we have had lots of positive responses from it.  It has been set up to run from now until February 23...that means 2 months to raise $3,000. (the cost of extra therapy until spring)
I mean, how can I explain to Luke that I tried to help him, but didn't do everything in my power to achieve it. 

We went all the way to Michigan to get a diagnosis and devise a plan of action~and were told that he could be taught to speak...if we used the correct methods and the intensity that is needed~he could talk!  I just can't stop now...

Yes, we are making progress...baby steps, but as soon as we take one forward~it seems like we take 3 more backwards.  :( 

We keep saying that we need more therapy and keep begging for it, but nothing has really come through, especially not Babies Can't Wait (which is ultimately because of cutbacks from the state)  See~it was explained that if we ask for more services, it sends a red flag to the state that someone isn't doing their job. 

How can that be though, Luke has the diagnosis of CAS (Childhood Apraxia of Speech) which research shows needs more intensive speech therapy and more occupational therapy to be able to train the brain to speak? 

I just don't get it.  Neither does anyone that I share this story with. 

But while everyone keeps passing the buck, between BCW, doctors and insurance~Luke is just in limbo, getting the minimal assistance. 

Ultimately, we are just going to have to buckle down and provide it ourselves.

SO, I present the Key~Mrs. Amy Struble of Keystone Therapy Services. 

Amy and I met when I was just about at my wit's end, ready to give up and throw the towel in (not really but sometimes I have to throw myself a pity party~and then pick myself up and refocus). 

With all the roadblocks and set backs~it would be easy to give up, but that's when I turned to God and said...if this is Your will, then let it be done...and He produced a way. 

I have said before that His hand has been on all of this.  (From me finding Kaufman, to going to her conference in Jax, to her agreeing to take Luke at the KCC because there was a cancelation, to the funding our trip to the KCC) 

He is the master planner, even when I try to micromanage~He knows the route He wants me to take.  He has plans for Luke, for me and for our family.

Amy has experience with apraxic kids and has used Kaufman's methods, along with others. 

We both feel that this will benefit Luke :) and she is just as excited as we are about the possibilities.  Speech/language and helping others is her passion and Keystone Therapy Services is her business. 

I cannot tell you how good I felt after our nearly two hour meeting~it was at the end, when she told me that she had prayed about our meeting and we grasped each other's hands, that I knew this was His plan.

Please consider donating a dollar or two to Unlocking Luke's Voice~you can enter any amount. 

Go online to give by credit card at http://www.giveforward.com/unlockinglukesvoice

or mail a check to:

Unlocking Luke's Voice
c/o Valdosta First United Methodist Church
PO Box 1306
Valdosta, Ga 31603-1306

(please write Luke Tarpley in the memo)

Wednesday, December 29, 2010

Hiyah~!!!


I am sharing a site that is AWESOME!!!

http://hiyah.net/

This mom developed educational software because there was nothing on the market to meet her own two children's needs. 

She has made these programs available at no charge to any parent or teacher who thinks they may be able to use them.  ;) 
The programs are based on high interest subjects, such as nursery rhymes, holidays, and birthday themes. The software keeps children engaged and actively learning. And for children with limited language skills, the programs can help give meaning to words and concepts. Holidays, birthdays, going to the doctor, dentist, or getting a haircut, are all broken down into sequential steps to thoroughly explain the event.

This educational software is made for children 18 months to 4 years of age (or higher for children struggling with language delays).

*Once again, thanks to Liz for sharing with me~so that I could share with you~!!!

Gift a Voice


It's OFFICIAL~!!!

Luke is the next recipient for the Gift a Voice program sponsored by Different Iz Good. 


It seems like Liz just posted this information about DIG on my facebook wall a day or so ago...and immediately I went to work emailing Camilla the Executive Director of DIG.  Who responded back almost in minutes with the words...Did we want Luke to be the next recipient?  Was she serious???  Of course, we would be the 2nd child to receive assistive technology from the Gift a Voice Project! 

What did I need to do? 

I started getting friends on facebook to friend the organization. 

Scott Fisher was the next person I emailed and asked for help (I also facebook emailed Angela McCrary, Scott's girlfriend~just to make sure he got the message). 

Could he possibly cut the video of Luke down to about a minute and take the text out so that Different Iz Good could use it?  I had already asked so much of him, but like the trooper he is and the great friends/family both he and Ang have become to us, they answered YES, anything for Luke! 

So, because of all of this...our Luke will be getting  an assistive technology device with special applications.  The applications on the device will help him to communicate.  :) 

*BTW I was supposed to be helping Liz find grants and information for her son, but instead she ended up finding something that could help Luke.  I thanked her profusely~and she restated that it was a GOD THING~and it certainly was.  God brought us back in contact with each other. 



We are over the MOON with the news!!!  This will definitely help lessen Luke's frustration with getting the words out (when he can't produce them by himself). 

God is GOOD!  His blessings are plenty.  We are truly grateful.

Please take a minute to think about any old phones, MP3s, cell phone parts, accessories or batteries you may have around the house~gather them together and let me know.  I will get them from you to ship or get you the shipping information.

~Did Santa bring anyone a new mobile phone, MP3 or tablet reader for Christmas?Different Iz Good especially likes iPhones and iPod Touches for using with the Gift a Voice Project; but they will take ANY device as they can trade it in for useable devices! {or if you'd like to play Santa to their next recipient, Luke, you can donate a new device too!} Thanks y'all - please share with your online communities (facebook, blogs, twitter, myspace, etc.)

Sunday, December 26, 2010

Wind Ups


We spent the day playing in the snow, napping, and jumping around at Monkey Joe's~Luke got a LOT of occupational and physical therapy on all of the blow ups there.  He had a TON of FUN playing with his cousins on the slides. 




Brad was once again Super Dad~climbing, racing and sliding with them~while I enjoyed the massage chairs ;)




But the big news of the day is that I found WIND UPS at the Monkey Joe store!!!
You are probably like...why is she getting so pumped about wind up toys? 

Well, they didn't mean that much to me before speech therapy, the Kaufman Children's Center and the KSLP methods~but since I have seen the power of wind up toys...I have been searching high and low for them.  I have found some before, but they were rather pricey and I still like a deal. 

Today, I found a couple different wind ups that we will be able to use with Luke as a reinforcer during speech therapy.  Wind ups are really special because they are quick, easy, and they are considered "magical" to Luke.  Kaufman used things like wind ups as rewards during speech sessions.

If you have any wind ups and want to get rid of them~let me know~I would be happy to take them off your hands.

Saturday, December 25, 2010

Monetizing, Fundraising, and Prayers


I really didn't want to cave and do it, but honestly~how can I resist the free money?  Money that could be used towards Luke's therapy ;) 

I keep being reminded daily that God will provide.  He certainly does...in some strange and unusual ways, but He is faithful. 


I added Adsense to my blog when we returned from Michigan at the urging of my husband.  He said, if you are going to blog about it~why not make a few pennies, too?  I clicked a few buttons and the ads appeared on my blog.  They didn't bother me as bad as I thought they would.  And now that I see that we have already earned a $13 for the month of December...the ads will stay.

I really wish I would have done it from the start~because we had SO many hits leading up to the trip to the KCC and when we were there. 

I am still amazed that...

~so many people read our blog (we have had over 5,500 hits since November)
~we have been able to help others through this blog
~how many people have been touched by me sharing our story
~how much support and how many prayers have been offered, all for Luke


Thank you.  I am so thankful for our readers and for being able to write~it has been such therapy to get it out there and has been so helpful in keeping others informed about Luke's diagnosis and progress.

Please keep reading and please keep praying.

And because some people like to specifics for their prayers...you can specifically pray for..

~Luke's voice to be unlocked
~Katie Beckett Waiver to be approved
~Friends of a Man Grant to be funded
~Small Steps In Speech Board to approve funding
~Unlocking Luke's Voice GiveForward Fundraiser
~Different Iz Good application
~Strength and wisdom to continue advocating for Luke
~Patience ;)

Friday, December 24, 2010

mobile.m4v



This is a video that Maggie worked on ;) Very proud of her learning the process of developing, writing, producing, editing and of course...acting on a Christmas video~!
Great job to the cast and crew!

If You Look For Me At Christmas~

If you look for me at Christmas,
you won't need a special star~

I'm no longer just in Bethlehem,
I'm right there where you are.

You may not be aware of Me
amid the celebrations~

You'll have to look beyond the stores
and all the decorations.

But if you take a moment
from your list of things to do

And listen to your heart, you'll find
I'm waiting there for you.

You're the one I want to be with,
you're the reason that I came.

And you'll find Me in the stillness
as I'm whispering your name.

Love,
Jesus

Thursday, December 23, 2010

Visiting Santa ;)


Luke's newest word is mall.  He really likes the mall (my mom takes him there, ALOT!) Since he can say mall, he now asks to go there almost daily.  So today when he asked, we went to the mall and saw Santa.  ;)




Maggie wasn't as into Santa at the mall, but she is really into calling him.  We found his number from a friend on facebook and called.  Cranberry the Elf answered and asked her some really funny questions...like if she was eating her vegetables and if she was going to bed on time!



Here they are telling Santa what they want~


Luke checks Santa out~


See you next year, Mall Santa~

Wednesday, December 22, 2010

It's a Brand New Day

It's a brand new day~and I have a better attitude.  Yesterday was my day to throw an "It's my party and I'll cry if I want to" kind of day. 

So, I have had the pity party~cried, sobbed, threw a couple of tantrums worthy of a 2 year old, and then picked myself up off the floor.  It was about 30 minutes after that I received a call from the grant wanting more information, particularly wanting to speak to Luke's neurologist and have them say that he needed the intensive therapy and materials we had asked for.  Of course this was WONDERFUL news, but how was I going to get the neurologist that wanted to charge me money for his signature to actually talk to the doctor on the board.

Well, I went to work emailing every doctor and contact that I had on file and made a plan to wake up early in the morning and stalk the neurologist. 

I am proud to say~Mission Accomplished! It only took about an hour for me to stakeout the office and wait for him to arrive.  I ambushed him before he could get to the back entrance~How could he tell me no?  He couldn't!  I wouldn't accept no for an answer~and thankfully he obliged. 

Now if he can just get the office staff to retype the letter, sign it, fax it in, and actually talk to the doctor that is on the board~we may have funding for more of Luke's therapies ;)

Please say a prayer~I know that God wouldn't keep making a way, if it wasn't His will. 

Tuesday, December 21, 2010

This Roller Coaster is Making Me Sick

I emotionally cannot take another spin on this roller coaster called "my life" right now.  I had geared up for a battle this morning with Babies Can't Wait and ended up having a miagrane.  We did get them to agree to ask for 1 more ST per week (they will ask the coaching team for the addition and will most likely be denied) and to add OT back to the IFSP, they had dropped it because we were taking Luke to the clinic instead of having it done in the home.  (this is a big NO-NO in early intervention)

This is my problem.  Who am I supposed to be angry with?  Who is really responsible for all of this red tape?  If someone could just tell me who is responsible...then I could take it out on them.

I did get someone to finally answer my question.  It is basically Babies Can't Wait in Atlanta that sends down these orders.  They do this because the state of Georgia that has cut back so much.  They are now doing something called the "coaching model".  I see this as just another name for the same thing~alot like the pyramid of intervention~more meetings and less being done to help children~period!

The state of Georgia should just rename Babies Can't Wait~Babies DO Wait!  (Is anyone else scared about what services the poor and uneducated are getting for their kids?)

So, we had the meeting and thought that we had made a step forward, only to find out hours later via phone call that it wasn't possible.  See~we had added OT back to the IFSP, but with a different provider and I was informed that insurance will not allow this to happen.  They won't pay 2 providers for OT, just 1.  So, I had to choose.

Here we go again~our lovely health care system.

I can't give my son the expert help that he needs.

All of this makes me just want to quit, give up and walk away from it all~but you cannot run from adversity.  We will just have to find a way.

Monday, December 20, 2010

Dear Santa

Dear Santa Claus,

I think that I have been a very good girl.  I am not perfect, but I do try my best to be good. 

What I want isn't something that can be bought in a store. 

It is actually something that is sort of an investment. (a rather large investment)

I am asking that you make an investment in my son's future.  You see~Luke has something called Childhood Apraxia of Speech.  The only problem is that it lasts longer than childhood and the only cure is therapy. 


He has a voice, but it just isn't developed yet.  We are working every day to teach him new words and to keep the words/approximations that he has learned. 

With the gift of more therapy, he would continue to develop his speech.  So, if you could please use your Christmas magic to make this happen~we would be extremely appreciative. 




I know that you aren't used to getting requests like this, but please consider it.

Merry Christmas!

Love,
Mary Clare Tarpley

P.S.  My daughter, Maggie, wants me to tell you that she wants a dog.

Sunday, December 19, 2010

If I Could, A Mother's Promise

At this time of year, I get a little giddy when I open the mailbox. 

I got that giddy feeling yesterday when I opened the mailbox and saw that I had a package. 

I was excited that I had received a present in the mail, but even more excited about what it was....a book!  I adore books, especially children's books!  And this one was sent with love from my Aunt Alecia.

It is a very special book, because it explains what mothers would do for their children.  My aunt understands what I am going through and has spoken to me several times since finding out about Luke's difficulties.  The book is called If I Could, A Mother's Promise by Susan Milord and it goes something like this...

If I could,
I'd rouse the sun
and make it shine
till day is done.

If I could, 
I'd paint the flowers
to brighten all
your waking hours.

If I could,
I'd swim the deep
in search of treasures 
for you to keep.

If I could,
I'd sing a song
to make the stars wink
all night long.

If I could, 
I'd make you see
how very much
you mean to me.

You are the song.
You are the light-
a treat and a treasure,
a joy and delight.

This much I know, 
this much is true
I couldn't love you
more than I do.

But, if I could,
I would.

I have a feeling this is going to be our new, favorite book!
;)

Saturday, December 18, 2010

I am what I am~Take it or Leave it ;)


I have shared this blog with many, many, many people.  So many so that I forget who I shared it with.  So, I guess this is written as a disclaimer for the upcoming post.  ;) 

I am sure there are lots of adjectives out there in which to describe me. 

I am a...

Mother.

Wife.

Daughter.

Sister.

Aunt.

Friend.

Neighbor.

Advocate.

Educator.

Part time SLP, OT and PT ;) (not really, but someone should give me a degree for the amount of hours I log in weekly doing therapy)

Drama Queen.

Party Planner.

Grant Writer.

Fund Raiser.

a Giver.

Outspoken.

and also a Rottweiler~especially when it comes to my family.

I am...

Loving.
Caring.
and Tender Hearted.

I have been called concrete-a-la-tete' (cajun french for hard headed)~
I like to see both sides of an issue, though.
I am a perfectionist. 
I don't like to meet standards, I strive to exceed them.
I am pretty organized.
I am a pathological picture taker.
I facebook
and I blog.

I am also a parent at my whit's end!

Frustrated, honestly doesn't seem to do my feelings justice.  I am beyond frustrated.  I am truly done with all of this. 

I loathe the health care system.  I can't stand health insurance companies, especially mine~United Health Care.

I should not have to beg, fight, plead, cry, beg again, and cry some more for the help that my child needs.  This isn't a want, it is a need! 

Every waking and slumbering moment of my life should not be filled with worry.

This is my child's future, my son's life and I will not be silenced. 
I will not SHUT UP!
I will speak for him until he can speak for himself. 

I will always stand up for what I believe in, especially injustice!

I will not apologize for my opinions or my beliefs.  Never have, never will.  And you can take that however you want to take it~it is the truth. 

~Next up...6 month review with Early Intervention Agency meeting post

Thursday, December 16, 2010

Friend to Friend Post

A friend posted on an Apraxia Discussion Board this question~and I just had to repost the question and my other (dear) friend's response. 

I hope neither of them minds, but it was just too good not to share.  I often feel like this, but don't tell anyone. 

Here is the question that was posted:
So, do the rest of you moms go through this? One day you're flying high over some little bit of progress or a glimpse into the inner workings of your child's mind. The next, you see how far you have to go, and think about how long it will take to get there. :)

Response from KGB: 
I feel like you are describing me on a daily basis! I particularly plummet into the dumps after doctor appointments and play groups.

At the Dr's appointment I get so sad hearing, delay this and delay that.

At playgroups, I find myself doing the worst thing ever, comparing my child to the others.

It only takes a second for my mind to start careening out of control about all the things he can't do and to start worrying about the future......preschool, kindergarten, high school and college.

Right now it feels like he will never talk simply for talking sake. It is also hard for him to do lots of things that require complex motor planning. I also start thinking that he is going to jump around forever and imagine him at 17 and not talking and jumping.

About this time, I need a good shaking. My husband and ST are good at this!!

The deal with delays in the little guys is that you just don't know what is going to happen and how they are going to recover. In some ways I feel confident that we are going to look back on all of this in 20 years and wonder why we worried so much. Our kids will be chatting away and we will tell them about the time when we spent thousands of dollars and hours trying to get them to talk.

Like everything else in life it is just one day at a time. As much as it pains me to say it, one of the most appropriate and sometimes irritating quotes is, Yesterday is history, tomorrow is a mystery. Today is a gift. That is why it is called the present."

I am so thankful that I am not the only one who lets myself go there sometimes.  I know that God has a plan for us~and it is all to happen on his time, not ours.  I stay positive most of the times, but with all of the obstacles that we face...it is sometimes hard.  It helps to know that you aren't the only one.  ;)

Wednesday, December 15, 2010

MRI

When you have a feeling like...why are we doing this? Make sure you listen to your gut and not the doctors. 

We took Luke to have an MRI with deep sedation at the Children's Hospital in Macon, Georgia.  Brad and I both questioned why we were doing this, even the day of the MRI.  They say hindsight is 20/20 and I would have to agree.  This is what we experienced...

Luke was scheduled to have the procedure at 1 in Macon, so we arrived at the hospital an hour in advance.  We thought the actual procedure was at 1, but later found out it wasn't until 3.  (They just get you to arrive 2 hours before your scheduled time.)

Please Note~
The Children's Hospital~staff, LPNs, RNs, blood techs, life therapists and doctors were FABULOUS with Luke and with us.  I cannot give them enough credit for getting us through this day. 
They gave Luke some medicine in a cream form that numbed his skin.  This made it easier for the IV.  (lots better than in the past)  It is still pitiful seeing him being stuck like a pin cushion, though. :(  I promised him this would be the last time when they were doing it. 


There were lots of children in the PICU.  Too many sick babies~made me grateful that we are only having to experience this to find answers, not because Luke was actually physically ill.  So many had cancer and needed chemo treatments.  It definitely was a very humbling experience.  We got to see Bass Pro Shop pass out fish pillows to all of them.  Luke made friends with these kiddies and brought a little joy to their day, too~making them laugh at all of his gestures and silly faces.  :)  He showed them all of his tricks!


We took Luke to the MRI machine and were able to go in with them.  I am so glad that we did~or we wouldn't have been there to see what happened when he was given the medication for the deep sedation. 


 
Because Luke is allergic to eggs, they couldn't use the medicine that they prefer and usually use to sedate children.  They used 3 different medications~1 made him laugh and giggle and the others had to be done in increments of 5 mg~these just made him very "drunk" and he couldn't hold his head up. 

He still wouldn't really go under though and when they lied him on his back, he began to cough (an awful sound, almost like he was going to choke)  This went on for about 1 and a half hours before the Pediatric Intensivist said enough~I could tell that the pediatric nurses and the MRI nurse wanted to just put him in the tube, but thankfully Dr. Katie put her foot down. 

They couldn't get a good read on his vitals and had already given him the maximum dose of the medication.  She said she didn't want to have him seize or have to intibate~and WE TOTALLY agreed.  She looked at us as she was holding Luke over her shoulder and had just kissed his forehead and said~I'm sorry, but we'lljust have to try this again when he isn't coughing.  If we could lie him on his side, maybe we could get it done, but the MRI people said it wouldn't work that way. 

We got to talk to Dr. Katie (at length) about Luke (his health, diagnosis of CAS and SPD, insurance problems, therapy) and why we were doing the MRI.  She couldn't believe that the doctors didn't just code his therapy as trauma or congenital anomalies~and we agreed~we can't either.  She gave me her email and said that she would write or sign whatever we needed ;) 

So, we didn't get an MRI~but we did meet some really COOL people and have a doctor on our side. 
When Luke woke up at 5, we gave him a breathing treatment in the PICU.  They were concerned with the cough that now sounding like the "crup".  We were discharged about an hour later and went to get that sweet baby the waffles he had been asking for all day (he hadn't eaten since 7 pm and hadn't had anything to drink since 10:30 am).  It was so hard to see him asking for a bah-bah or some wah-wahs and not be able to give them to him.  

At dinner, Luke began having trouble breathing~it was very labored and scared us.  Luke was also still very "out of it".  We boxed up our food and headed back to the hospital for them to check him~we didn't want to get back on the road with him being this sick and us not knowing if the deep sedation had caused this. (I did call nurse triage, but they were having a shift change and told me to call back) 

So, we went back to the Children's Hospital.  (Better to be safe, than sorry~right?)

Two nurses came down and assessed Luke in our car, then they called Dr. Katie.  Another doctor (Dr. Clark) came down and checked him, too.  After another hour or so, they let us go home~but home was still 2 hours away.



Luke continued to cough on the trip home and into the night.

Brad and I decided that we won't be doing any other tests on Luke.  We have put this baby through too much already.  Sometimes you just need to know when to say when~and this is the time. 

I plan on calling our neurologist and letting him know our decision, maybe this will hurry his diagnosis along, maybe not?!?

All I know is that we went to the hospital well and came back with a very sick, little boy.  :( 

Monday, December 13, 2010

Mommys on a Mission

A friend just welcomed someone new to the world of apraxia to our club, but reminded her that it wasn't a club that you would choose to belong to, more like a club that you join to help you and your child get through. 

True DAT~this isn't like Rush!  I didn't pick this group,
want to wear their colors,
want to be their sister,
want to pledge my allegiance,
want to adopt their creed,
want to help their philanthropy.
I wouldn't choose any part of Childhood Apraxia of Speech for me or for my child.

I wouldn't want to be the class president of this club, but lately I am thinking that I might be voted in ;)  I know my husband thinks that I am with all the emailing, texting, and phone calls from these "sisters".

I am glad that I have been able to share a little bit of the knowledge that I have gained with others. 

I hope that this information gives them the hope and vision that they need on this journey. I hope that my spirit and enthusiasm gives them strength to keep questioning professionals and push on for their children.

I know that without the others that helped me from the discussion boards, blogs, etc. I wouldn't be in the place that I am now. 

I honestly believe that God is leading these people to me, so that I may help them bypass the roadblocks that we had to face.

I thank God for giving me my voice and for being able to use it to assist others.

This weekend I was able to meet 2 new apraxic mommys online.  I also emailed and talked to another mommy whose child was just diagnosed today. 

Although I wouldn't sign up for this club if given the choice, I am so grateful that there are others out there like us looking for answers, searching for glimmers of hope and finding the light at the end of the tunnel. 

Mommys on a Mission!

Sunday, December 12, 2010

Elfing Others ;)


I can't say that this idea is my own~I actually got the idea from a friend on facebook.  (thanks KB)  She called it playing Santa, but I am renaming it.

The idea goes something like this...find a family that is in need or could use a boost and suprise them with gifts on their doorstep this Christmas. 



We have adopted families before through church angel trees, DFCS, school and Maggie's class...but each time it was done anonymously and although we got alot out of shopping, wrapping and giving the gifts...Maggie didn't get the entire experience. 

She "got" the meaning, the reasons and the feeling~just not the whole deal. 

I think it was because she didn't get to actually see the people's faces light up and experience the excitement of suprising them.  It is one thing to explain how much it means to others, but it is another to actually "see it".

SO, this Christmas...we are going to "elf" some very special people. 

We are planning to get together with another friend and her girls and drive over to their houses with the gifts wrapped up and place them on the doorstep, ring the doorbell or knock and then run.  We hope to make it back to the car in time and be able to see them come to the door. 

(We do this in our neighborhood for Halloween with small treats and call it "booing". 

I am encouraging everyone to do this.  Even if you can't do the entire family and even if it is just a small present...I am hoping that this "elfing others" will catch on. 

It will give Christmas a totally different meaning to you and yours~I promise. 

Now off to get my "elf" on ;)



PS If you are interested in doing this and are in my area, please email me.  maryctarpley@yahoo.com  Unfortunately, there are many people that need help this Christmas.  I can definitely help get you some names, wish lists and addresses.

Saturday, December 11, 2010

Thank You Cards

Black Border 5x7 folded card
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Thursday, December 9, 2010

OM!!!


OM~!!!

I can't believe all that is happening right now~check out a list of what
we have accomplished lately!

1. The Friends of A Man grant is complete and in the mail! 
This grant (if funded) will pay for materials and therapies for Luke.
Special thanks to Tiffany J. Sparks with Walton Options for being our supporting agency ;)


2.  We completed the paperwork that was required for the
changes to the Small Steps In Speech grant. 
We just had alot more paperwork
(estimates, SLP notes/goals, etc.)
that needed to be sent in.

SO WHAT'S THE BIG DEAL?


The BIG DEAL IS...that if approved,
Luke will have his additional speech therapies
funded from January until our Spring Break! 

Research has shown that children with apraxia should have
speech therapy 4 to 5 times per week for 30 minutes.



3. We have almost completed EVERYTHING that was needed
for the Katie Beckett Waiver~!!!  This is also HUGE! 
It has been a long time coming, but I kept plugging along.  Luke had to be denied by Social Security for SSI and denied by Medicaid before applying.  (that took 2 to 3 months in itself)

If we can get this waiver, our income wouldn't be held against Luke.



Please keep these grants
and Luke in your prayers!
We feel blessed to serve such an awesome God~









 

Wednesday, December 8, 2010

Get Ready...the Holidays are Here!


Sensory Smart Holiday Hints

The holiday season is a demanding time for everyone, including children, especially children with sensory issues.  Parties, concerts, school plays, Christmas card pictures, Breakfast with Santa, shopping, decorating and wrapping presents are just a few of the demands that get all of us STRESSED OUT!  Add to that the demands for “best” behavior and you will definitely need cocktails, me time, prayer or all three to recover from this jolly season.   :)


Happily, there is so much you, a sensory smart parent, can do to help~

Get ready!
Kids who struggle with changes in daily routines do best when prepared in advance. Well before any special occasion, discuss what will happen before, during, and after the big day. For example, if you are going to Grandma’s house for the holiday, review what to bring, what to wear, who will be there, and the general sequence of events. You can explain why we celebrate Christmas using picture books if that helps. Mark off days on a calendar as the event approaches. By reducing unwelcome surprises, your child will be better able to predict what will happen next and be more empowered to organize his behavior.


 During any school vacation, try to stick to a normal schedule like having the same bedtime and wake-up time each day so you don’t disrupt your child’s sleep-wake cycle. This is especially important for a child who tends to be a problem sleeper. Of course, if you are taking your child to an evening celebration, your ability to control this may go right out the window. Your child may stay up much later than usual, and either awaken at his regular time skipping several hours of sleep, or sleep late and miss out on several hours of daytime activity. If your child’s sleep schedule is disrupted, get it back on track by readjusting it bit-by-bit, making bedtime 10 to 15 minutes earlier each day.


The holidays are a great time for working on fine motor skills. Enter the name of the holiday into your computer browser to find holiday themed activities such as dot-to-dots, mazes, crossword puzzles and more. If your child needs handwriting practice, have him/her write place cards if it’s a big sit-down meal. (or draw pictures for younger ones) This will also help your child anticipate who will sit next to her, and review what she might discuss during the meal.


Making holiday decorations can help your child feel more engaged in the celebration. Children of all ages love making snow people by gluing together Styrofoam balls with the tops cut flat and adding a felt face with wiggly eyes, carrot stick nose, and so on. Kids also love to glue large sequins or buttons onto a tree cut out from green construction paper or felt as well as make their own tree ornaments. Your child could also can make a gingerbread house with you or christmas ornaments for the tree.  You will find plenty of easy craft ideas in holiday season magazines, especially those geared toward kids.


If your child dislikes getting messy, use the tactile desensitization techniques your OT shows you so your child feels more comfortable touching “yucky” materials. If your child hates touching mushy wet textures, provide a longhandled paintbrush and vinyl gloves. If your child insists on washing hands every time he gets a speck of paint or glue on them, try to keep a damp sponge or paper towels nearby so your child can wipe off the mess without totally disengaging from the activity.




Cooking is also a wonderful sensory experience that lets your child participate in holiday preparation. Ask your child to help you write the shopping list. Go to the supermarket when it’s not too busy and have your child help you find things on the shelves. Try to not take your child to the supermarket if you are in a rush or it’s the busiest time. All of the stimulation of the food, lighting, shopping carts, and people may be tolerable only when you and the store are calm. At home, let your child help you pour, mix, blend, and decorate holiday food. Even if you’re going to someone else’s home to celebrate, you and your child can prepare a special side dish or dessert to bring along.


When gift shopping, shop when stores are less crowded or shop online. If you MUST take your child into busy stores, plan ahead and bring sensory comforts such as chewing gum and other oral comforts, earplugs or favorite music with headphones, a baseball cap or visor to protect sensitive eyes from downcast lighting, and so on.

Finally, just because everyone plans to dress up for the holidays doesn’t mean it’s worth forcing your child into clothing that will make him miserable. Scratchy lace and bows on party dresses may be intolerable. Your son may be unable to handle a tie and dress shoes. But you never know, your child may love putting on a special outfit for a special occasion. Before the event, try on any new clothes and bring a change of clothing just in case. Or opt for clothing you know your child wears happily even if it’s simply what he wears every day. As always, the key is to be flexible!

Very best wishes for the holidays!

Pregnant with Luke at Disney
Adapted from the November-December 2010 issue of Autism Asperger’s Digest magazine