Don't Quit

As I'm sitting here drinking my coffee this morning out of my favorite mug,  I felt compelled to share the saying on it with you all today.  I have been inspired and motivated so many times myself with this poem on this little coffee mug I've had  since college when a dear friend gave it to me.  (Thank you Penvose family)

Don't Quit
When things go wrong,
as they sometimes will.
When the road you're trudging
seems all up hill,
When the funds are low,
and the debts are high,
And you want to smile,
but you have to sigh,
When care is pressing
you down a bit,
Rest if you must
but don't you quit.....

Success is failure
turned inside out
The silver tint
of the clouds of doubt
And you can never tell
how close you are,
It may be near
when it seems so far,
So stick to the fight
when you're hardest hit.
It's when things seem worst,
the you must not quit.

e

Motivation = 2 lil ole ladies

For those of you who know me personally, you know that I've lost a little weight over the past few months. About 40 pounds to be exact.  I started back in September getting motivated to take control of my weight issue and start focusing on taking time for M-E once the twins were in preschool a few days a week.  In October I began dropping them off in town at school and then swinging over to the beautiful Beaver Meadow Walkway.  Honestly, I was never on that walkway but I heard so much about it.

Here's my lil old lady story:

October 2009, I strap on my headphones and hit the pavement with my arms a swingin.  About 100 yards in front of me were two older ladies (my guess is they are in their 60's or 70's)  I figured the competitor in me was going to catch up to these ladies and finish my walk before they did.  Little did I know, they are faithful daily walkers of this walkway.... and I couldn't catch them before I was so winded I had to slow my pace.

Well, 7 months later I still see these sweet ladies on the walkway.  Today I was really late getting to the walkway so I knew they had a BIG head start...LoL

About 1.25 miles into my jog I see them on their way back to the beginning already.  I politely say Hello and continue on kinda chuckling at myself being bummed that I probably can't catch up to them at this point.  I still had 1/2 mile to go to the end before I would turn around and head back to where I began.  I kept my pace trying to push it every once in awhile with some sprints... then I see them.. I see them!!  They are about a 1/4 mile up and I only have 1/2 mile to go... I think I can I think I can I think I can...

And.. I did!!!  I finished and was in my car pulling away when they were coming up on the finish point.

Thank God for lil ole ladies to keep this lady motivated to move her butt a little faster every day :)  I finished 3 miles in 37 minutes today, not so bad.  6 months ago it took me an hour to do 3 miles.

Your Baby Can Read Update - Volume One

Ok, I have been trying to figure out how to upload a video from my camcorder to my computer for two weeks now and that has been my excuse not to blog about this program.  So enough is enough.  I will post a video as soon as I figure it out and with the help of my brother in law who is an IT I hope that it will be sooner than later.

Now about the program.  I won the starter DVD package from a great blog give away in December on a blog called Pink Nothings .  We received the DVD and it was slow getting the boys started with it as they are VERY MUCH set in their ways and like to watch their usual tv programs and sometimes are resistant to watching new things.  This program caught their attention rather quickly but as quick as it caught their attention, they lost their attention at the beginning.  As I continued to put in the video and get excited about it myself they started really focusing and paying attention to what the children were doing and to what the man was saying on the TV.  We watched this for about two weeks and I started seeing amazing things happening.  The boys were putting their arms up when the words came on the screen before they were being spoken.  I saw them pointing to body parts as the words appeared on the screen and before they were spoken.  I stood there with my mouth wide open not believing what I was seeing.  I was cautious not to get to excited thinking that perhaps they were just memorizing the order of things on the tv screen.  At week three we went ahead and got out the flash cards to show them.  Again... I was open jawed and teary eyed when they signed every word they knew.  I was certain that they knew all the words but I never formally taught them the signs.  Words such as tiger, elephant, gorilla.  I got onto ASLpro.com and looked up these words myself to teach to the boys and they were signing them correctly within the week.

I kept this up and was certain that this program was going to work for us.  I just had to come up with the money to purchase the package, but I was going to try to do that as soon as I could.  Then I was contacted by Pink Nothings to give my testimony of how the starter package is working for us.  Here is what I wrote:

Okay, Okay, I WAS THE DECEMBER WINNER!! I want to tell you that my 4 year old identical twin boys both with PDD Autism and Down Syndrome AND they are both non-verbal are really getting it. They sign each word as it comes up on the screen. We have the starter DVD and they already knew all the words to sign except for tiger, gorilla and elephant but they know them now :) I am going to give it about another week or two and then I will video tape them and blog about it. I am sold!!! I think I am going to buy the rest of the program for them very soon!! Thank you SOOOOOO MUCH!!!!

~Stacy 

Your not going to believe this... but within minutes of me posting this, I was contacted again.  This time, I was given a Your Baby to Read Representative to discuss getting the deluxe package for FREE!!!  WHAT??!!!  Yes, for free.  I have agreed to work with the boys, document their progress, blog about it and hopefully post some videos of their progress to show that this can and will work for children of all abilities.  I am a big fan of this program.  I have taken it to the boys preschool and they were AMAZED and have already put into their wishes for next years budget to get this program for the children.  I too may purchase one for the lending library at The Arc of Jefferson County.  I am excited to move onto Volume 2 while continuing to review Volume 1 with the boys.  They are BOTH getting it, they are BOTH reading random words shown to them on the cards and in the book.  They are BOTH making their mommy so proud!!!

More to come soon.... (with a give a way coming your way!)

Annual Down Syndrome Clinic Visit

Today we traveled to Pittsburgh to take the boys to the Down Syndrome Clinic.  I always feel so encouraged and ready for action after leaving this place.  Talking to a doctor (or our case this time a wonderful Nurse Practitioner) who's main job is dealing with children with Down Syndrome on a daily basis give us more confidence that we are doing everything right and giving the boys everything we can to hopefully make them as independent as they are capable of being when they are adults.

We had GOOD News today and BAD News today.  I'll start with the good. 

We were told that their receptive language is very good, to the point of high functioning good.  Their cognitive ability to process what they are being told to do was a pleasant surprise to Ms. Susan and as she put it, with their rough start they are doing wonderful.  The fact that they know and use approximately 200 signs was a huge bonus for them.  Our main push with everything now is to get aggressive outpatient speech therapy and occupational therapy which includes sensory therapy.  We have been on a waiting list for a new Autism clinic opening soon in Ridgeway called Possibilites... which is fully equipped for sensory integration dysfunction.. BUT we were told not to wait any longer and get them started right now.  So I will be making some calls tomorrow to set up an evaluation to get them started more local and ASAP.  Overall, we got the thumbs up for how well the boys are doing..  My main concern is speech and we were told that it still could very well come for them, don't give up and keep on doing exactly what we're doing... Keep on Keepin on, that's what we'll do.

Now the Bad News :(

When the boys have exams its often hard for the doctors to make sure their testicles are both decended.. Today it was confirmed that they do in fact need to see a urologist about getting the surgery needed to help out with this situation.  Isaac may very well need re-circumcised as we foresee issues when we try to start potty training him.. So I will be calling a urologist tomorrow too.  Then we are being referred to a new ENT as both boys have very large tonsils and she recommended we do a sleep study and remove the tonsils, but ask that we get a second opinion from the ENT about all of this and perhaps get another cookie swallow done on both boys to see how they are doing with drinking thin liquids.  If they are not aspirating we could stop thickening their milk everyday.  This would be HUGE!!!  We are also to consult with a podiatrist regarding one of Calebs toenails.  It is split the whole way to the cuticle and it never grows out, it just keeps splitting and splitting??  So it may be ingrown to the point of a surgeon needing to remove the toenail to let it start growing out fresh again...  And last but not least, the wonderful thing about Children's Hospital in Pittsburgh is that if you have a surgery scheduled with sedation and your kiddo's need any other work done they can coordinate as much as they can under one anesthesia, so if and when they go into surgery we will also schedule dental work be done on them.

So the little buggers have some issues with health that we need to address and get taken care of this summer, but hopefully everything is for the best and they will have a quick recovery from everything.  One interesting statement from today is that if they get their tonsils removed, it could possibly help with their feeding and swallowing issues AND with their speech... hummm, at this point anything sounds good to me to promote speech.

I am encouraged and proud of the boys at today's report of how well they are doing.  Its been alot of work for them and for us, but worth every minute of it.  Now if we can just get all the doctors appointments out of the way that we're going to have to goto and get the surgery over with, we can start potty training these smart lil buggers :)

Run/Walk for Someone Special.. I have TWO someone specials :)

Tomorrow, April 11th, is the 31st Annual Run/Walk for Someone Special event in Sykesville, PA.. The event is the biggest fundraiser for The Arc of Jefferson County and Camp Friendship.. The Arc normally uses the money raised to put on TWO camps for children with Special Needs who live in the Jefferson County and DuBois areas.  However, this year.. The grant that they normally got to put on an Autism Camp in the month of August was not received this year so the Run/Walk Event needs to raise enough funds to put on THREE camps this year.  It can be done.. God has been so good to us here at The Arc of Jefferson County.

I will be running the 2 mile fun run, while the rest of my family walks the 2 miles.. We are raising funds and hoping maybe someone reading this might help.

Our fund raising page is http://www.firstgiving.com/thearcofjeffersoncounty.  Any donation amount is welcomed and appreciated.  If you have any questions about the event or The Arc of Jefferson County you can visit our website at www.jcarc.org.

I have been the Executive Director of this organization for 13 months now and its been an amazing journey and I look forward to seeing where the rest of this year takes us all.

Long Overdo - Hairdo

So we after having to cancel two hair appointments because of one or another of the twins being sick over the past several weeks, we finally got around to getting their haircut before Easter.

I myself, LOVE the long curlies.  I love them!!!  But they get mangled and tangled and they are not happy to have their hair brushed so many days we just went without and it wasn't pretty..  I have some family members (uhem... Megan) who teases me for not getting the boys hair cut more often.  Its not an easy process, I love the long hair look on them, and I don't just pick them up and take them to a barber shop.. I have a wonderful friend come right to my home and do it.  Not only do I have to coordinate our busy schedules, but I also like to have TSS staff on hand so we can hold hands down, sing and dance, hold head still when needed, and help in any way to get it done as quickly as possible.  So I have to hire a STAFF of people to get it done... LOL

I thought I would photograph a little more this time because it is such a fun time :)