Happy Halloween 2009

From Tristin, my goth girl:


From Camille, our gypsy:


From Elijah, a super ninja:


From Tristin, Camille, Elijah, Noah and Eric:


The twins don't really care either way to get dressed up. Actually they would rather not and just sit in the car and watch videos..LOL They did pretty good this year in school playing dress up, so perhaps next year we'll think of a twin costume.

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 30.... Goals

Having children with Down Syndrome has created a whole new vocabulary for me. Words like IFSP, Transitions, Goals, IEP's, Interventions, Therapies, Developmental Delays, Non-verbal, Sign Language, Sensory Integration Dysfunction, GERD, Asthma, Tracheaomalasia, Subglottic Stenosis, Thickened Liquids due to Aspiration, Cookie Swallows, Stimulation... oh I could get carried away and just keep on typing words that pop into my head that have been new words for us over the past four years.

I want to focus today on Goals. Now four years into this whole parenting a child with a disability I am just now realizing how important it is to set goals. I know the service providers have been doing this since the boys were infants, but I think I am just getting the importance of it all. Without goals we wouldn't have something to word towards. We would just get lost in the shuffle of everyday life and may or may not learn a new ability. I know, I know this took longer for me to grasp than most.

It was something that is happening in my life right now that made me realize the importance of setting goals and ultimately made me appreciate even more what my boys have gotten up until this point and how much more I will stress goals in the future with them. My UH HUH moment was when I set a weight loss goal for myself this month. What I had to do to reach that goal was not just do the same ole same ole everyday, I had to change things, tweek this and tweek that, go beyond what I would normally do each day with meals and fitness.

I set the goal to lose 10 lbs this month. I have been recording my calories, I started walking 2.5 miles a day and when that no longer seemed a challenge for me I began a Couch to 5K program and I am actually JOGGING now. I have never jogged in my life for fun that is :) I stayed focused, I kept my goal in front of me and I accepted the challenge to change. It has paid off and I lost 12 pounds this month. I am so excited and ready to dive into the next month and see where that brings me.

I think that the goals I have set for my boys have been good to this point, but I think they're ready for more. I think we need to challenge them more and help them become even more independent than they've already become. I look forward to setting more goals for my life and for my children's lives. I think I may even take this to a new level, setting goals for my marriage, for my Christian walk, for my house keeping... WOW!! I better get a big piece of paper and lots of gold stars to stick up when I reach a goal.

Who woulda thunk it!

31 for 21 Day 29.... We're Broke...Literally!!

So I haven't gotten to the blog in a few days. Imagine, me, busy? Hump, who woulda thought...LOL I'm not even going to use the busy excuse, nope not this time. How about my laptop kicked the bucket, or shall I say got its bucket kicked.

One of my children, their name will remain anonymous, accidentally dropped my laptop the other night and broke the screen.



This is all the shows up on my screen, don't adjust your computer or your eyes, this is what it looks like. I was honestly furious about this. The children have been told they are NOT to use my laptop they have one of their own. All be it the dinosaur that it is, but its still ok for them to play games and get online with. My computer has all my information on it for the Arc, for my church bulletins I print out weekly, thousands of photos, our finances, and much much more. I guess you don't realize how important this incredibly time consuming machine is in your life until your about to lose it. I have even been recording my fitness and nutrition on a great site that I've used on and off for about two years now on SparkPeople and I was getting freaked out that I couldn't track my calories for the day...

Thank goodness, I put a plea out on Facebook and a few ladies knew that I could plug my laptop into a desktop monitor and use it that way for now, until I can get a new screen. THANK YOU!! THANK YOU!!! THANK YOU!!!!

Then today at preschool Isaac took a terrible tumble and he looks a little broke now too!! They said he was sitting on a chair, fell off that onto the sand/water table and must have hit it just right that his eye bumped into a bolt sticking out a little bit. Thank God he had his eye shut, but its gonna be a black eye for sure.


Poor Bugger, guess he can go Trick or Treating as a Boxer now....LOL

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!!!!

Cute Pumpkin Cake using two bundt cakes

We had a baby shower for my sister in law today. She had her baby a month ago and our church wanted to have a shower for her, so today was the big day. Since she had the baby already we did a Meet Our Lil Pumpkin theme. It was so cute and the decorations and stuff turned out better than I thought it could.

I made the cake. It was actually pretty easy and it turned out really cute.



Its made from two bundt cakes put together and an ice cream cone in the center for the stem. I used a chocolate cake on the bottom and a carrot cake on the top. It was YUMMY!

31 for 21 Day 24.... First Bowling Trip

Today was my nephew Daniels Birthday. Happy Birthday Buddy!! He held his birthday party at a bowling alley and I was very anxious to see how the twins would respond to all the people and noise at a place like this. They did WONDERFUL!!!

At first Caleb buried his face in my shoulder and refused to look at anyone or even eat pizza for awhile. After about 30 to 45 minutes he knew we were staying there if he wanted us to or not, so he decided to join the party. Once he was up and around he really started enjoying watching the people bowl and the reactions they gave after a ball was thrown. He was still pretty withdrawn and to himself, but we did get him to bowl about three times. It was so great to see this. They just turned four and doing something like this with them was something I don't think I really thought about even trying. But hey, birthday party = FREE bowling, and that's the kind of price I like to try something out :)

Here is a video of Caleb sitting and watching everyone. The light from Tom's phone bothered him a bit so he makes funny squinting faces, but its pretty darned cute:


Isaac on the other hand. As soon as we got to the bowling alley he was completely engaged in everything. The bowling alley was using a blacklight and they colors were very vibrant and he was loving that, he was so very interested in what the people were doing and he watched the ball from the time the people released it until it hit the pins. While we ate he sat backwards in his chair just to watch the bowlers. He was very happy when I asked him if he wanted to try and bowl with a ball. He ran as fast as his little feet would carry him, it was so cute. In this video the noise level must have been a little higher, this is the only time he acted like this the whole 2 1/2 hours we were there, but again, its CUTE!

(Oh and I dropped a piece of pizza on my lap while I was feeding the boys, its always me coming out messy and not them...hump!)

I thought this was a great experience and I'm so happy the day turned out as it did. My nephew had a nice turn out for his party, he seemed to have a great time, we had a great time and we made a memory today!!!