Tuesday, December 29, 2009

Ohhh... Caleb Now what??

Have you ever had one of those scary moments that you don't know if you should panic OR run for your camera?  I had one of those moments the other day.  Caleb and Isaac have recently found out that if they shut the door to their bedroom, they have privacy.  They love this.  I'll go and open the door to peek in and check in on them and they both bolt towards the door and slam the door in my face and then I hear them both giggling.  Its actually quite cute, however, they also get into some mischief sometimes.   One thing they do often is emptying the dressers out or how about throwing their whole stack of a case of 82 diapers on the floor, and most recently Caleb found out how to get ontop of his dresser.  YIKES!!!   I couldn't help but run for my camera (while another adult supervised him on the dresser) and get some priceless photos of this event.

Sometimes parents of children with Down Syndrome celebrate the craziest things.  I was nervous that he would not be able to get down and of course worst case fall and get hurt.  But more than anything I was SOOO PROUD of him for using  his gross motor skills to pull his weight up on this dresser.  I truly was impressed, nervous, but impressed.

Here is how I found him:

Then I asked him how he thought he would get down.  He thought about it,...


He quickly realized that this was not going to work, so back he got back up ontop...

and thought and yelled at me...

then he thought he would try the side approach towards the bed... humm sounds good...

After this photo, mom jumped to the rescue, but this photo is priceless!!!!!

Friday, December 25, 2009

From Our Family to Yours....

We Wish you A Merry Christmas!!

Call for Prayer

As we celebrate Christmas this year, there are those that are greiving a loss.  One such family held a very special spot in my heart and I am very saddened by the news.  I occasionally follow some adoption stories from Reeces Rainbow and came across this family earlier this year.  THIS family IS an amazing inspiration.  Please take a moment to pray for the Loux family, they lost an amazing man this week.

Wednesday, December 23, 2009

Tuesday, December 22, 2009

Monday, December 21, 2009

He shoots..He scores...He cheers!!!

Have you ever had a toy that has needed a battery replaced and you just keep on forgetting about it and forgetting about it? That is what happened to a Leap Basketball Hoop game the boys loved playing with. It has been probably six months since it has been played with and mainly that was because of my neglect to replace the batteries. When you have 25 toys needing new batteries in your house you tend to only concentrate on those that get most of the use.

So....I stocked up on batteries for Christmas. I saw the basketball game sitting there and thought Hey, lets get this hooked up for the boys again. Well, let me tell you. They played together in the playroom for OVER AN HOUR together. They were laughing, taking turns, clapping and cheering for each other. It literally brought a tear to mama's eyes. It was so darned cute and I was tickled with the photos I captured of the day.

Caleb especially loves putting the balls in the basket. There are settings you can choose, one counts to 10, another says one letter of the alphabet with each basket, and yet another function spells out simple words like CAT DOG PIG... They love the alphabet and numbers the most.






Now that was a great basketball game in my book!!

Updated Photos of Tristin, Camille, and Elijah

Our kiddos are growing up so fast. My camera has been on the fritz for the past several months and I finally got a different one, so I've been bombarding my children with taking their photos so I can update for family and friends. We have alot of family that will not be able to come home this year for Christmas so I wanted to share how big the older three are getting.

She is in the 6th Grade and attends the same Middle School grandma teaches at. This has been very beneficial to her and I when the need for a ride arises. She likes the school, has made new friends, and she likes the challenge it presents to her, but she DOES NOT like getting up at 6am and getting on the bus at 7am. She takes after her mama :) She is in her second year of being a Cadet Girl Scout and is working hard on her Silver Award for this year.

She is in Second Grade and is excited to learn cursive writing and math. She likes to do subtraction even though it gives her trouble sometimes, she keeps at it. She is in brownies and has a really good time with her troop. Camille has made great progress this year and we enjoy watching her develop a strong personality...sometimes good, sometimes bad. She is the most caring kid, she LOVES her little cousins and is a great caregiver to Kylie, Tyler, and Alex when we visit with them.

He's our little wild man. He loves his new black pug, Rosco and spends lots of time chasing him around and getting him all excited. He has taught Rosco to chase his tail and it about drives me up a wall. Elijah is in first grade and doing absolutely fabulous. He is an amazing reader and I see good things for his academic future. He is a Tiger Scout and learning how to get along as a pack. He wanted to badly to sing the song "All I want for Christmas is my two front teeth", he worked hard at it and his wish came true... no front teeth :)

Oh and we have a new hunter in the family. Tom has taken Tristin under his wing and is mentoring her in hunting this year. She passed her Hunters Safety Course and I'm hopeful that she'll have a successful hunt in the spring.

Friday, December 18, 2009

Yo Gabba Gabba Fix

Caleb and Isaac are into Yo Gabba Gabba this year. Non stop about four or five shows per day they watch and they even made up a sign for the show. They wave their hands in the air above their head like the green monster Brobee does. Its so darned cute!!! Anyway we went to a Christmas party with the kids on Sunday put on by a fantastic organization here called Caring and Sharing for Kids. This organization has helped us out so much with the many trips to Pittsburgh we have had over the past four years. They are currently serving 215 area children and all of this began with the dream of one woman named Sally. Sally and her husband have been such a blessing to so many and I pray that God blesses her as much as she has us..

Here are photos from the party. We submitted our letters to Santa in November and he brought all their presents to the party. We say lots of smiling faces that day!!

Isaac got Brobee

Caleb got Plex:

Camille was excited to get the Apples to Apples Junior game:

Elijah and his webkinz:

And Tristin was pleased with her gift certificate to Wal-Mart!!

Thursday, December 17, 2009

Photos with Santa....not so good!!


I never win!!!!

But I did today!!!! I am so excited. I usually don't bother to enter give-a-ways because I never win anything. This time I entered because it was something that I was VERY intrigued by but didn't know if I wanted to shell out the money for it. I know that we will put this to good use and I'm hoping that it will pull some speech out of the twins. If nothing else it will increase their signing skills.

I won the Teach your Baby to Read series. I entered the contest on a great site for give-a-ways called Pink Nothings and they notified me today that I was the winner!!! Hip Hip Hooray, that totally made my Christmas!! Even Tom is excited about it.

So I will be able to review this for you in a couple weeks after we use the program with the boys. The one benefit that I see with this is that we have a staff of TSS's come in home three times a week and do work with the boys. Some of their work includes doing drills with the boys. This has been very effective in teaching them their colors and shapes. I will be sure to add the Teach your Baby to Read DVD's into the daily work schedule.

You can learn more about this program at http://www.yourbabycanread.com

Monday, December 14, 2009

The twins TV Debut

We were asked back in September if we would allow Isaac to be a model in our local American Red Cross winter campaign. Of course we thought that was such an honor to be asked. Not to mention we love to show off our beautiful children, even under such circumstances. When the initial contact took place I assumed they would just photograph Isaac and use his beautiful face all over. Then they called to set everything up and said we all had to wear matching pants. "We All??" Yes Mrs. Hanzely, you will need to tell Isaac's story for him since he is unable to right now.. Oh Great, now I have to show off my mug....LOL

Off the subject, but this little episode motivated me to lose the weight I've been losing over the past three months. To bad I didn't do it before the photo shoot :)

I went and donated blood today and got to talk to Beth. She is the person who made the first phone call asking if I would allow Isaac to be their model. It was so nice to see her and for her to see the twins and how well they are doing. They were the hit of the 45 minutes we were there. Accompanied by their TSS, they sat very nicely and watched their portable DVD player and just glanced up every once in awhile to make sure mommy was still there in the same room. I couldn't have been more proud of them today. They really are good boys!!

I was glad to see Beth, because I received a DVD of all the photos, tv commercial and webcast they filmed and wanted to know if I could share this on my blog. She made a phone call... and Here It Is....

TV Commercial:

I will get some of the photos up later. There were some really cute ones!

Saturday, December 5, 2009

Who's teaching their baby to read?

So who has seen this infomercial? I honestly have not. My older three kids have and they often tell me Mmom get this for the boys", but when I see that I think.. that ain't gonna happen with my twins.

I follow another blog called Pink Nothings who is giving this away as a free Christmas Giveaway. I love following this site because the one sister has two BEAUTIFUL girls both with Down Syndrome. They are not twins, there is a two year age difference. The parents were shocked (as everyone would be) when the second daughter came along blessed with an extra chromosome like her big sister. Obviously, parents experiencing the same road as have a dear spot in my heart.

Anyway, if you follow the link to Pink Nothings above you will be able to witness first hand seeing a four year old girl with Down Syndrome reading. It truly brought a tear to my eye, that was amazing! My boys are still at a disadvantage because they are completely non-verbal, BUT they do sign and we could just teach them the sign along with the words. My guys amaze me everyday. They are very smart. They are very interested in learning. They get bored very easily so they MUST be engaged in something every single day. Things from watching Signing times and enforcing new signs, to doing fine motor skills playing with toys, to running around and wrestling with the older siblings. They really are normal kids and I always love finding new techniques to help them learn. They are both very visual guys, so this Teach your Baby to Learn intrigues me.

If you have used it, or know of anyone who has. Give me some feedback.

Thursday, December 3, 2009

Quote for today...

Lost time is NEVER found again
-Benjamin Franklin

Wednesday, December 2, 2009

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)

Tuesday, November 24, 2009

Thank the Thankless Jobs

This came from an email I received today and thought it was the perfect time to share this!

There are many roles and professions in our society that are terribly underappreciated. They could use an “atta boy” or "atta girl," and this is the perfect season for praise. If you see them, thank them. If they are in a restaurant, pick up their tab. Report to their boss that they do a great job. Get creative.

Here are just a few examples of people who give a lot and get a little:

Janitor – Notice how the hallways in your office building or school are usually free of trash and dust? You go into the bathroom and everything is ready to go. And it's all done by someone with a name tag. It's one of the hardest labor jobs to be a janitor, yet he or she only gets recognized when something is messy. Change that.

Teacher – Sadly, kids are generally more disrespectful of teachers than they were even 20 years ago. If teacher pay went up as much as paperwork has and child discipline needs to, they wouldn't need their pension funds. To boot, many parents think that teachers are the problem when kids bring home bad grades.

Garbage man – To paraphrase an old saying: Stop doing your job for a month, and have the garbage man stop doing his for a month. See whose absence is more noticed. If any of us did the work for a day, we'd appreciate our jobs a lot more.

Police and fire personnel – The police are usually noticed only when they're giving you a ticket. Firefighters get the attention when you pull over on the side of the road to let them through. But they are both doing important work.

Military – After a person sees enough reports about the armed forces on the news, they tend to grow numb to it. But our men and women are still over there, doing their jobs just as much as ever. Don't forget how we're being kept safe by people that most of us will never meet.

Mom and Dad – This one may not seem like it belongs here, but we think so. When the kids come, it's not just about you anymore. In fact, virtually nothing is about you. Most people wouldn't have it any other way, but that doesn't mean a pat on the back isn't welcome. The food, shelter, band-aids and teething–it's a lot of work. And that's not even getting into those infamous teen years. Plus, parents lack something that everyone else on this list gets—a paycheck.

Sunday, November 22, 2009

Wednesday, November 18, 2009

If your a teacher...you MUST read...

After being interviewed by the school administration, the teaching prospect said, "Let me see if I've got this right.................

"You want me to go into that room with all those kids, correct their disruptive behavior, observe them for signs of abuse, monitor their dress habits, censor their T-shirt messages, and instill in them a love for learning.

"You want me to check their backpacks for weapons, wage war on drugs and sexually transmitted diseases, and raise their sense of self esteem and personal pride.

"You want me to teach them patriotism and good citizenship,sportsmanship and fair play, and how to register to vote, balance a checkbook, and apply for a job.

"You want me to check their heads for lice, recognize signs of antisocial behavior, and make sure that they all pass the state exams.

"You want me to provide them with an equal education regardless of their handicaps, and communicate regularly with their parents by letter, telephone newsletter, and report card.

"You want me to do all this with a piece of chalk, a blackboard, a bulletin board, a few books, a big smile, and a starting salary that qualifies me for food stamps.

"You want me to do all this and then you tell me... "I CAN'T PRAY?"

Wednesday, November 4, 2009

Looking for potty chair advice

Well my guys are four and I think that its time to give potty training a try. Do I think they are ready, No not yet, but once we introduce something they are pretty quick at picking things up, so why not try this over the winter months. My question/ concern is that they are 4, each boy is around 30lbs and I'm afraid of buying a potty chair that was made for a 2 year old and my guys butts won't fit it right. I also HAVE to have a decent sized splash guard as my guys are not really blessed with any size in the winkie area and they are sure to be straight shooters...if ya know what I mean :)

So What have you used?

Sunday, November 1, 2009

Reeces Rainbow Angel Tree Project

I would ask that if your looking to make a donation to an organization who does a wonderful like helping give children LIFE, the I would suggest you take a look at the Reeces Rainbow Angel Tree Project. We gave last year and we will give again this year.

Click Here and just take a look at all the beautiful faces that are in need of a loving home. Oh me oh my, it melts my heart and there's no words.

Saturday, October 31, 2009

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.

Friday, October 30, 2009

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!

Thursday, October 29, 2009

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

Monday, October 26, 2009

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


Sunday, October 25, 2009

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!

Saturday, October 24, 2009

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!!!

Praying for Polly

One thing about having online support is finding wonderful people and falling in love with so many families from all over the world and following their blogs and their lifes ups and downs. I'm calling out for prayer for a little one, Polly, who was just diagnosed with MoyaMoya and will require brain surgery. MoyaMoya constricts blood flow in the brain. They discovered this when Polly had a series of seizures paired with a stroke and paralysis of one leg.

Polly's family had three beautiful girls and very recently added another beautiful girl from the Ukraine to their family through adoption. They are just now adjusting to becoming a family of six and now will be facing some medical issues with Polly. If you could find it in your heart to pray for this family I would really appreciate it.

Grab This Button

Friday, October 23, 2009

31 for 21 Day 23.... Stubborn

Today all 5 of the children did not have school due to a teacher in-service day. The weather was rainy and chilly, the kids were all pretty hyper so I still sent them outside to play... rain and all. The twins still had their TSS come today to do drills with them and work with them for a few hours. After most of their work was done we all headed out to the Amish Bent N Dent store and bought a ton of groceries that's sure to last us two or three weeks. When we first got a TSS we were not allowed to leave the house. We were only allowed to use their services in the home environment as that is what the boys were familiar with. Now, we are allowed to use the TSS's out in the community since the boys are older and we need to help adapt them to social setting in the outside world. Its is TRULY nice to take them to the grocery store with me, especially on days like today.

I had my own cart which I intended on filling up from the get go, I knew there would be no room for a squirmy boy. So each worker got a cart and one boy to push through the isles and talk about how to act in a store. OH BOY!! They just weren't fast enough today. I was in one aisle and I hear a BOOM..then a CRASH...then another BOOM. It was hard for me not to chuckle. I knew it was my boys before I even began to investigate. If you take your eyes off of them even for a minute they like to scoop items off the shelf and toss them. So they both got a pretty lengthy discussion on why they should not do that and they can get in trouble for this or they could break something (which thankfully today they did not). They both seemed to be processing what was being told them and I turned to continue my shopping. Not even 15 seconds later I heard another BANG... and then the TSS came over and told me they would be taking the boys out to the van while I finished up my shopping. I did laugh a bit then. When they want to do something, or don't want to do something, NOTHING stops them. They are stubborn. VERY STUBBORN!! And I think this is the great fighting spirit that I love about them. I've often thought that it was this stubbornness that got them through the tough start they had in the NICU as a 2 pound and 3 pound premature baby.

So many people label people with Down Syndrome as "Oh they're such Happy People". They are happy people, but they are also sad, mad, fearful, grumpy, hurt, shy, outgoing, confused, overjoyed, intelligent, moody, self-conscience, and stubborn.

I got off the idea I started to blog about so let me get back. So the kids had the day off school we did some running, weather was bad outside but we made the best of it. We all took our turn on the Gazelle exercising, we all cooked dinner together, we all sat and watched Twilight after dinner and folded laundry and just had a great night. I went in to sit with Tom for a bit to unwind and get ready to write something in my blog tonight and in comes the kids laughing and screaming with joy at what they had done. I asked them to all put their pile of clothing away and they decided to dress up our dogs instead. It was quite funny and I thought I would share my kids' humor.

Auggie Doggie "our girl"

And Rosco "our boy"

And this was Caleb trying to tell us what he thought about all the craziness

I am thankful for crazy days like this and I'm thankful for stubborn, silly children.

Thursday, October 22, 2009

31 for 21 Day 22.. BUBBLE!!

I didn't get around to blogging yesterday, BUT we had some very exciting news!!! Caleb and Isaac attend a preschool called Stepping Stones that is set up for children on the autism spectrum. They go two days a week and its a great structured class that has a different theme each week and the teacher REALLY gets into her themes :)

I walked through the threshold of the doorway yesterday and I was greeted with a very excited "WE HAVE SOME GOOD NEWS FOR YOU!!!" They were playing with bubbles and it was time to put them away. The TSS began screwing on the cap to the bubbles and saying all done with the bubbles. Isaac came over to him and pulled his shirt and said "BUBBLE" plain as day. They had to take a double take to make sure it was in fact Isaac and it was. The teacher and the TSS both heard it and they said it was unmistakably the word BUBBLE. They said they both teared up and couldn't wait for me to get there.

So you know I've gotten out the bubbles and tried to get the word out myself with no success. BUT, I know that he has been making different noises. No words yet, but the way he hums and babbles has been changing. I'm so anxious to hear a word out of his cute little mouth.

When they didn't walk until the age of three, I was always wondering if they would walk. And now they run! Now I've been doubting any talking. I try not to. I know that on their own time they will do what they're going to do but its hard to be patient as a mom, especially having three typical children prior to the twins and knowing that they are really delayed in their speech.

I have HOPE! We are going to push harder and see if we can get more sounds without to much frustration from them. But... I have HOPE!! I have that spark of excitement back that they may say MaMa someday. When that happens nothing or no one will be able to burst my bubble for months :)

Tuesday, October 20, 2009

31 for 21 Day 20... God chose me because I'm strong??

I was reading a conversation today on Facebook talking about how the abortion rate is astronomically high for those finding out while pregnant that they are carrying a child with Down Syndrome. The rate now is about 90% of pregnancies are terminated when they find out that are carrying a child with Trisomy 21. I'm not going to get into a big debate on abortion here so just keep reading.

One point I want to make is that the initial diagnosis via bloodwork or ultrasounds is not enough in my opinion to determine if the child has DS or not. Let me explain. I was carrying TWO children with Down Syndrome TWO!!! Blood work came back normally and I had several ultrasounds done, including three or four Level II's. Especially during the Level II ultrasound the perinatiologist spent 15 to 20 minutes trying to measure Baby B's pinky and to make sure it was not crooked. He verbally said out-loud, NOPE no markers for Down Syndrome in these children. Not that it mattered to me either way, but it was said and I was given a false outcome. So if TWO children can come back showing all signs normal How many false reports say that the child your carrying does have Down Syndrome, and they DON'T?? My advice to anyone given the "this child might have Down Syndrome" report, should consider an amnio before terminating the pregnancy, if that's what they choose to do.

Second point I want to make is that people ALWAYS tell me that God chose Tom and I because we're such good parents and we're strong enough to handle something like this. Although I don't mind the encouraging words state that we're good parents. I DO NOT FEEL ANY STRONGER THAN ANY OF YOU!!! This was the interesting comment I found on facebook today:

"God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength.
Raising a child with Down syndrome doesn't TAKE a special kind of family, it MAKES a special kind of family!


Monday, October 19, 2009

31 for 21 Day 19... Therapies

There are many things I never experienced before having identical twins both with a diagnosis of Down Syndrome. But the one I'm going to blog about today is therapies.

When the twins came home they began Early Intervention therapy at about four months of age. The first type of therapy they began was Physical Therapy. At four months of age the therapist came into our home and did little leg exercises with the boys. As they got stronger they worked on holding their head up, then rolling and sitting, then getting up on hands and knees and then into standing positions. This was alot of work for the boys and one thing that this made me realize is that we totally take our typical healthy children for granted at how naturally things just come to them. To explain this, its just a natural progression for children to lift their head, then learn to roll, then get up on their hands and knees..rock back and forth and then start crawling and so on. With my boys they literally had to be taught how to do each one of these steps. Its amazing how hard my guys worked to get where they are today.

Then Occupational Therapy started. They stared with play therapy. They would learn to push buttons on toys to make the lights and music go off. Then they would pull things, put rings on a post. Now that one was one that literally took us months to master. I'm pretty sure it took both boys about three months to be able to put four rings on a post. It was quite a challenge for them. Now we put shapes into a shape sorter, we're starting to work on pre-writing skills. They also put weighted vests on them for sensory input and this helps them focus on getting their work done. Here are a few recent photos from outpatient OT.

Isaac on the swing:
Building a tower:
Now stacking the squares back together:

After OT came Speech Therapy. The major surprise with this therapy was that the therapist(s) are not trained in sign language. All they do with the boys is try to get them to vocalize and make sounds. After trying this for three years now, I would think they would offer another suggestion. Now some of them do know basic sign and they incorporate this into the therapy session, but I'm still amazed that signing is not "part of their job". The twins truly enjoy speech therapy. Its alot of puzzles, reading books, signing songs, and playing with balls and cars trying to get them to make any noise we can.

Here is speech therapy putting puzzles together:
Here is TSS signing them a story:

Then the boys both had a VitalStim therapy for about a year. This was an electrical stimulation to their neck area to help strengthen their swallowing.

Notice the electrodes on their neck and the little gray machine behind Isaac, that was the volume controller. They would turn the intensity up if the boys would tolerate it. They were to eat and/or drink during this 45 minute session each week.

Now they also have TSS services due to their Autism diagnosis and I have to say that by far these girls are the best thing that's happened to me and my boys. They basically take each therapy that the boys are given and replicate it all week long. Each boy has 18 hours a week with their TSS and they behave better for them than they do me...LOL


Now that the boys are three they attend a preschool provided by the school district to prepare them for kindergarten AND they attend another preschool for children with Autism called Stepping Stones. So between the two preschools they have a four day week of schooling and TSS's at home three days a week.

So the boys are very stimulated and very intensely educated. I am very happy with where they are right now and it amazes me to see their wheels a turnin and thinking about what they've been asked to think about and doing what they've been asked to do. I am so proud of them. I am so happy with our journey so far with them and anxious to see where this journey takes us. God is so good and I am so honored to have been blessed with these boys.