Stepped out of my comfort zone today....and it was GOOD!

Today I was doing my final preparations for my ACL reconstruction surgery on Wednesday morning.  I was sitting at the hospital in the lab waiting for my bloodwork this afternoon.  There was a gentleman sitting next to us with a cute little 7 year old red head boy and a baby in a car seat he was rocking.  For the first few minutes the hood was up and I could not see the baby.  Then the dad pushed back the covering and I saw this beautiful little baby.. and I thought he had Down Syndrome.. I sat there and TRIED not to stare... but I couldn't help it.. The baby was looking at me with the most beautiful almond eyes and I was certain the baby had Down Syndrome. 

Have you ever been in the position that you "think" that a child has Down Syndrome, but your half afraid to ask?? That was me... So I was sitting there contemplating, Do I say something to this man..or do I not??  Then they called my name to go back to the room for my bloodwork.  When all of that was done I couldn't stop myself.  I reached into my purse and grabbed my business card for The Arc of Jefferson County and I headed over to this man. 

I introduced myself as a parent who was in his shoes 5 years ago and remembering how I didn't feel like there were many people in this area in my shoes.  I asked him if he was local and he was.  I was here to tell him we have a nice family support group that meets each month less than 15 miles from where he lives and I invited him to come.  I was very nervous and chocking on my words not knowing how this man would take my boldness...  He extended his hand to shake mine and THANKED ME VERY MUCH for approaching him... Whew!!! My husband was with me and he also shook his hand and told him that we would welcome getting to know them.

For my first time, I was happy with the outcome.  I was TOTALLY happy to have this lil pumpkin smile at me.  Oh how it feels like it was just yesterday that Caleb and Isaac were this little.  I hope I get to see this little guy some more..

The Arc of Jefferson County and Camp Friendship

Its time again for the Annual Run/Walk for Someone Special event to occur for the 32nd year in a row.  Last year was a record year with 365 participants and $40,000 raised.  ALL money raised at this event stays local and helps The Arc of Jefferson County puts on 2 summer camps for children with special needs (a total of 3 weeks of fun) and a camp for children with Autism (1 week long).  We are a very rural area and to be able to fund something like this ourselves with NO GRANTS or loans is really an exciting thing for us.  On average it costs us $100 per camper per week to do all we do.  We provide a nutritional snack and meal each day for campers, counselors, teachers and Directors.  We provide transportation to and from camp each day.  We have a very qualified teaching staff and need to pay them for their time with us.  We have been blessed to have many people in the community donate their time or provide their service at a low cost at the camps to provide fun for the kids.  4-H has brought in some horses, local fire department has brought in their trucks and gear for the kids to dress up in, karate demonstrations, service dogs, dental hygienists showing proper dental care, and much more!

Here is me finishing my 2 mile fun/run last year in 19 minutes 43 seconds!!  (The one in the yellow shirt with sunglasses that looks like she's about to die...lol):

Here are my handsome twins who have brought me to know and love The Arc and Camp Friendship:

As with any non-profit, funding is harder to come by these days.  People are not giving their money like they used to.  Please consider donating what you can.  Every Dollar does add up and EVERY Dollar is appreciated.  This year my boys will be going to camp.  Part of my passion as Executive Director of this great organization is to keep services going and growing....and to continue bringing new services to this area, not only for my boys, but for the many children and adults that deserve to have something to look forward to each year, and to make memories that last a lifetime.

Borrowing a blog post from a fellow mom to twin boys both with Down Syndrome...

A True Test of Acceptance

Posted on December 11, 2010 by Maggie

I heard an absolutely fascinating story today of a mother and a baby and Down syndrome.  It was NOT one of those ” a friend of a friend of a friend” kind of things.  The story teller relayed this story to me about her family member because I’m the Mom of 2 boys with Down syndrome.  And, honestly, this story has rocked me to the very core and changed my concept of true acceptance and advocacy.

*     *     *

A  23-year-old woman gave birth to her first child.  Shortly after birth, her newborn baby was diagnosed with Down syndrome.  Questioning the doctors about whether this might happen again, she was told that the occurrence of Down syndrome is merely an accident.  A mistake in the over replication of the 21st chromosome.  She and her husband were advised that their risk for having another child with Down syndrome was no greater than for anyone else and, because of her young age, they should not worry about the unlikely recurrence.  Shortly thereafter, they conceived their second child.
Sadly, the second pregnancy ended in a miscarriage.  After examination, it was determined that the unborn fetus also had Down syndrome.  The mother was referred to a geneticist where it was discovered that all of the cells in her womb — ovaries, uterus, fallopian tubes, eggs etc.  — carried 47 chromosomes instead of the usual 46.  At the age of 25, this mother was diagnosed with Mosaic Down syndrome.
Did I hear a collective gasp…  Or was that just me?  AMAZING story, right?  Extending it’s meaning, where there is one, there are others.  How many of us might be walking around with a little extra chromosomal material here and there?
The impact of mosaic DS on her development was obviously minor.  After the diagnosis, several of what she thought of as just her quirky little characteristics suddenly made sense.  She has the space between her big toe and the next.  She has small ears and narrow ear canals.  She has the simian crease in one hand.  These are all things that are relatively common in the DS population — but they can also occur in the non-DS population  so no one thought anything of it.  Otherwise, her development, her education and her life were  completely “typical”.
Can you imagine finding out at whatever age you are now, that YOU have Down syndrome?  How would you react?  Would you hide it from people?  Or, would you tell the world?  Would you embrace the information and make it part of you?  Or, would you mourn the loss of your typical self?  How do you think your spouse would react to your new diagnosis?  How do you think your boss might react? Would this news change the way you see yourself? Would it change the way you see others with Down syndrome?   Would it change the way others see you?  Would these mindshifts be for the better or for the worse?
Is  this one of those faulty “it’s fine if it happens to you but not if it happens to me” thought processes?  Is it OK for your child to have Down syndrome but not OK for you to have it?
I have been pondering this happenstance all day.  What an amazing thing to discover.  What an opportunity to change the way the world sees people with Down syndrome!  What an incredible epiphany for me, to imagine that I, my spouse, my mother, boss or neighbor might have Down syndrome and we just don’t know it.  To contemplate that absolutely any one of us could be carrying a little extra something in our genes without knowing it just levels the playing field for me! As an advocate for my children and for all people with Down syndrome, I not only accept whole-heartedly but I embrace the fact that my children have  Down syndrome.   I also believe that I’d be OK with finding out that I have Down syndrome.   As a matter of fact, I’d likely rush the podium and scream it out for the whole world to hear, “YES, I have Down syndrome and, TRULY, we are all more alike than different.”
Think about it…  I mean really give this some thought.  Could you accept a diagnosis of Down syndrome for yourself?


Visit her blog at http://walkonthehappyside.wordpress.com

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.

Where did November go????

Really! I can't believe how busy that month ended up for me and doing what you may ask?? I don't know....

I have been training to run my first 5k, which I DID on Thanksgiving morning... thank you thank you very much :)

The twins and I have been going through a bit of a transition with getting a new TSS worker in the house and replacing our favorite TSS ever Colleen. She had to move onto bigger and better positions within her company and I wish her Good Luck in all that she does. I am struggling a bit getting used to someone else coming in and working with the boys when we had the Best there was.. and now this new girl doesn't even SING??? What??? She's young and I think it embarrasses her to sign in front of other people. One piece of advice for anyone who comes in contact with my boys. They are so motivated by music and signing that if you even just sung the ABC's or the Wheels on the Bus or Five Little Monkies Jumping on the Bed, you would INSTANTLY be the boys favorite person in the whole wide world..LOL

I went and got the boys sized for an adaptive stroller last month. They are getting so big and I cannot handle them out in the community alone by myself so for safety we went ahead with ordering them a "wheelchair" stroller to use. The weight goes upto 110 pounds each so its something we can use for a long long time to come.

I observed the twin at preschool one day last month and it brought tears to my eyes seeing how far they've come and just how involved they are in the classroom. They were signing songs and the boys were making the gestures before the words even came out. They anticipated what was coming next for like four songs. I was so tickled!!!

Another thing that happened last month was that we got word that BOTH boys were approved for a wish from Make-A-Wish. We don't know what they are going to do yet, but we're excited for them.

Tristin got to go deer hunting for the first time Monday, she did not get anything but is still hopeful to go out this weekend and give it another try.

Camille has been getting a better attitude about things lately. A couple times this month she cranked up her MP3 player and helped around the house so much I almost felt like paying her a housekeeper fee!! When she wants to do something she sure does a great job at it.

Elijah has become the Wii master all the sudden. He gets on that system everyday. I think its a boy thing? LOL but he can't even read all the words in some of the games that give hints or advice and he still masters the game. Oh and another great point to make about him, I went out for a jog one day and he asked if he could come. I didn't think it would hurt to try and see what he had in him, he jogged a mile with me and his pace was faster than mine!! I was so proud of him and I think he may be my training buddy come spring :)

Tom and I have kept busy with everyday life. But the most noteable thing for November was that we both got to attend the Arc's National Convention in Pittsburgh November 12 - 14. This was so beneficial for us both, being that we both just got involved with the organization this year. I am the Executive Director and he is the Vice President of our branch. I am excited and hopeful that we will be able to use some of the knowledge gained at the convention to bring more services to our area. As a matter of fact, I met with a grant writer today to see about getting a grant for integrated sports in the area and field trips for the families of our parent support group. Let's hope :O)

31 for 21 Day 31.. 21 Things about Down Syndrome

Well as the 31 for 21 Challenge comes to an end I wanted to share 21 different things about life with Down Syndrome that pertain to my life.

1. Down Syndrome is NOT something to say your sorry about to new parents. Remember that at the beginning the child is just an infant that will require the same needs as any other child, if there are not other medical needs.
2. Down Syndrome is also called Trisomy 21 because the 21st chromosome has 3 cells.
3. Down Syndrome used to be considered a curse to many, and today I truly believe its a blessing.
4. Down Syndrome can be scary. Anything that is new and uncertain is scary.
5. People with Down Syndrome are not "always happy". My guys get frustrated, goofy, sad, adventurous, and misbehave just like my typical children do.
6. If you ask my children what they think about having twin brothers with Down Syndrome, they will tell you they think they are pretty cool. They don't see the disability, they just see their brothers.
7. Quote from my daughter Tristin "how are they different?"
8. Quote from my daughter Camille "they are hard workers and always have something to do"
9. Therapies do not have to be a bad thing. Not only do they benefit your child but you too.
10. I have become a Down Syndrome stalker. I love looking at new babies or children and interacting with adults with Down Syndrome. They are beautiful people.
11. Your life will be forever changed for the better, and that's probably not what you would have thought in the beginning.
12. If your pregnant with a child with Down Syndrome and considering an abortion, please remember there is a waiting list for infants with Down Syndrome in the United States. They are valued people and in demand.
13. Down Syndrome is pronounced just like that..NOT Down's Syndrome.
14. Here's a tip to PLEASE remember: People First Language please. People with Down syndrome are people 1st. Instead of “a Down syndrome child,” or "the Downs twins" please say “a child/individual with Down syndrome.” Down syndrome does not define my children..it's just a part of who they are as a whole.
15. Finding support is a major thing to understand your rights and regulations as a parent of a special needs child. Be sure to find support either locally or online.
16. Identical twins with Down Syndrome is VERY rare, and if your reading this blog and know of someone please put them in touch with me. pookeymom@msn.com
17. The Arc is a great organization to help support you. Each state has on and many many counties have one. Here is mine: The Arc of Jefferson County
18. People with Down Syndrome are not always classified as Mentally Retarded. Just like typical people, there are different degrees of learning ability.
19. Some days I wonder if its really that they have to many genes or we don't have enough. What would the world be like if we all loved and lived as people with Down Syndrome do?
20. Its encouraging to me to know that some people with Down Syndrome drive cars, hold great jobs, they get married and have families, they attend college, and much much more.
21. I thank God each and every day for choosing me to be the mommy of two amazing boys both with Down Syndrome. What did I do in my life to have deserved such a blessing :)

Thank you for following along this month as I tried to bring some awareness to my readers about Down Syndrome. If you ever have a question, a comment, or need more information about Down Syndrome, please feel free to contact me. I'm always up for good conversation about a topic so near and dear to my heart.

31 for 21 Day 26,,, God Opens Doors

I'm asking for help so read all of this please...

About a year or so ago, I was searching high and low for some kind of support group in my area to attend for parents with children with Down Syndrome. I live in a small rural area and I had no such luck.

I have gotten so much WONDERFUL support online and so much advice and encouragement from people that I most likely will never ever meet. But I was still looking for physical bodies to talk with and share our families ups and downs and spend time with doing things with our kids together, and found nothing.

I read so many stories online of other people's experiences with support groups and I decided that I was going to figure out a way to get a local support group going in my town. I know there are not alot of children with Down Syndrome that I know and with the whole HIPPA rules I was having a hard time finding any other people in this area who might be interested in joining my future group. I still continued on and read up on organizing and planning events, how to fund raise, how to advertise, how to start with little or NO money, and much much more. One of the last things I had on my TO DO LIST was to contact our local Arc Branch. If your not familiar with the Arc its an organization that provides services and advocacy for children and adults with Intellectual Disabilities all throughout the United States. You can read about The Arc of the US here, and The Arc of PA here, and my local branch, The Arc of Jefferson County here.

When I contacted the Arc they said that what I was planning on doing was something they would like to get going in this area as well, they just couldn't find anyone to do it. I was asked to consider coming in and doing this with The Arc. Without understanding exactly what they did or who they were I declined because I didn't know anything about other disabilities, and I didn't really want to learn everything about them all either. It was all I could do to understand Down Syndrome. After some thought and prayer I realized that the challenges, the activities, the opportunities, or the lack of each of these things mentioned would be the same for all individuals and families dealing with a disability. I felt that God was opening a door for me that would provide me with the ability to get a support group off the ground much faster as I would have a facility to host the meeting, funding since they are a 501c non-profit group, they have an established client list already, and I have an "in" to finding and reaching out to other families who have a child or adult with disabilities. I took the position of Executive Director back in May of this year and haven't looked back since.

GREAT!! This was going to be a cinch. I would get a big group together, we'd have speakers, we'd have parties, we'd have informational discussions, we'd find an advocate to discuss IEP's, we'd do this and do that. The group would not only be for parents of children with Down Syndrome, but for anyone struggling with anything dealing with special needs. Sounds simple.

But now 5 months in, we truly don't have the participation that I expected. We have about four of us that have committed ourselves to this and attend monthly. I can't figure it out, seriously. Am I the only person who feels the need for a group like this?? Am I the only person who will make time for something like this?? Am I the only person who doesn't feel inconvenienced to find a babysitter for something like this?? Am I the only person who wants something in place for new parents as well as seasoned parents to come together and share our experiences? I don't understand.

I'm reaching out again to my "Cyber Support Group". How often do your groups meet? Do you bring your children with you? Siblings? Spouses? What type of activities do you do? Any advice would greatly be appreciated. I am not giving up by any means and I know it takes a year to get things like this established, but like I said already have so many things on my side and such potential to get the ball rolling, I'm just at a point that I don't know what else to do right now but to start physically dragging the parents to the meetings. Maybe a bribe?? LOL

HELP ME!!!!

31 for 21: Day Five... Support

I never realized how hard it is to find support for something until I needed it. Down Syndrome is a scary enough diagnosis to be given, but then feeling like your going through it all alone is even scarier. When the twins were born, I didn't know anything about Down Syndrome, or premature babies, or Necronizing Entercolitis, or colostomy care, etc....

It took several months (about four or five) before I even found someone local to me who had a child with Down Syndrome. And that happened to be twin girls, one with Down Syndrome and one without. It was so nice to relate to this mother and find we had alot in common.

I have to say that the best support I got then, and still yet today is from my online friends. I have met so many people online that have become like my second family. I have met a few of them in person and that is really exciting to see the person in the flesh after seeing lots and lots of photos first. I find it comforting that if I'm having an issue or problem with something I can go and post on my favorite site DownSyn and I'll have an answer almost immediately. And now that I've jumped on the Facebook wagon, there too I enjoy keeping up with friends I've met online who have children with Down Syndrome. Last August I was sooo thrilled after searching and searching to find an online forum for parents with multiple children with Down Syndrome. I have found a few families who have identical twins both with Down Syndrome from that site. We are so rare that is so nice to find others.

I enjoy speaking to my online friends, but I was still wanting to get something going locally. I read books, planned out when to meet, what to call our group, and I started to try and find other families interested. One of the last things on my "To Do List" was to contact our local Arc organization. I called and spoke to Rachael, she was thrilled that I was trying to start something in the area and said I should consider working with them. I didn't know what the Arc was exactly and I knew they dealt with all types of special needs and I was just looking to stay in the Down Syndrome family. After alot of prayer I realized that God had opened the most amazing door for me and I accepted the offer to come on board with The Arc of Jefferson County. I have been their Executive Director now since June of this year. I have been blessed to be able to use their wonderful facilities which include an 8 acre camp with playground, pavilion and 12 picnic tables, fenced in pond, classrooms, complete kitchen and dining hall and much more. This has been such a blessing and yet I am still having a hard time getting families to come to the support group meetings??? I don't understand it to be honest. I am hoping that word of mouth gets around and more people will come.

I am so blessed with the support I've gotten this far, and I hope that I can support others in the future. Any suggestions or comments on how you have gotten your support groups to grow??