Bathtub Buddies

Funny thing about bath time photos is that seems to be the only way I can get the twins in a shot together these days. They are busy boys and usually both going in different directions. So when its bath time, I have captured them in one spot where they both love to play together.

I got Adobe Photoshop Elements for Christmas and I'm still learning how to use it. I didn't realize that there were so many functions to learn to make a photo look nice. Thanks to my friend Kacy, I learned how to bring out color in a black and white photo today... THANKS!!



Splish Splash....


Caleb


Isaac



Every single day I thank God for blessing me with these boys!!!

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 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.

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.

31 for 21 Day 18... The boys are FOUR

Today at church the boys got lots and lots of birthday wishes. Many comments on how grown up they look with their hair cut, many comments on how they can't believe its been three years already, many comments on how far they've come, and then more comments on how they can't believe they are three already... LOL

I think that this is something that I really have to come to grips with too. I still call them the babies. And I do this DAILY! They aren't babies anymore. And where did the age of three go?? Its like they went from 2 to 4 way to fast. I know that this is a personal struggle for me, treating them like they're younger than they are. Now YES I'm very aware that they are delayed and they still need me more than a typical four year old but I often wonder if I were to be a little more tough in what I did or did not do for them, would they do it for themselves? Now I don't mean that if I didn't spoon feed them their meals for a day and they were starving I wouldn't feed them to see how long it would take for them to be self feeding.

Self Feeding. This is an issue for us right now. Isaac is self feeding himself cereal, but thats it. He won't self feed anything else but a bowl of cereal. But at least he's doing that. We put a bowl of ice cream, yogurt, rice, anything else, he'll sit there and stare at it or throw it?? Caleb is still hand over hand to even get him to bring a spoon to his mouth. Am I babying them by caving in and feeding them?? How do I just say OK BOYS, your four now, time to feed yourself. I'm struggling with this.

Potty Training. Every parent gets anxious and excited to get their child potty trained and parents of multiples get even more excited. I am dreading it. I just don't know if they are ready, but how will I know if we don't at least give it a running chance? What is a good age to try? When did you all start training your child with Down Syndrome?

Drinking out of a straw.. That's something else we just have not been able to accomplish. We're working on it but not there yet.

Blowing.. I was hoping that they would be able to blow out their candles when they turned four but we are no where near that yet.

Throwing Stuff Oh my gosh do the boys throw stuff. Non stop. They want a drink, they chase me around the house signing milk milk milk. I get it for them they take two swigs and THROW the cup!! They pull anything off the counter they can reach and throw it, they want you to change the TV station so they bring you the remote and after you change it to what they want.. They THROW it. They come into our bedroom and throw Tom's alarm clock everyday?? If you put food on their high chair that they don't want they throw it. This gets frustrating for sure.

I guess this turned into a ranting blog entry. I guess I'm just trying to come to grips of needing to treat them like toddlers instead of babies now that they've reached the age of FOUR. But its the things mentioned above that I struggle with that perhaps keep me from treating them like big boys. I think we're in the terrible two's!!!

Any suggestions and comments welcomed :)

31 for 21 Day 15.... Reeces Rainbow

Of course I have a huge heart for children with Down Syndrome. Of course I have a houseful with five children, and Of Course if I could get my hands on some money I would so love to bring another child into our family through adoption.

Grab a drink, click the link below and take the next 12 minutes and 34 seconds and watch this video they put together. It will touch your heart.


Reece's Rainbow

31 for 21 Day 14... Down Syndrome Features

One thing that I have come to love more than anything are the features of people with Down Syndrome. I found this photo on the left when I googled Down Syndrome Features. I know that some may find that statement odd, but I absolutely love looking at people with Down Syndrome and admiring their beauty. The almond eyes, the smaller facial features, their beautiful smiles, their attractive personalities.... I could go on and on.

To clear up any misconception some may have, There is no degree of Down Syndrome. My boys do not have mild Down Syndrome because they have mild features. I hear that often, Oh they must not have it really bad because they don't look like they have Down Syndrome alot. Having Trisomy 21 does not determine your personality, your IQ, your future, your life choices. I know many people who's children are not qualifying for services because their children do not need it. I know many parents who have their child potty trained at two. I know many parents who's child was talking at 12 to 16 months of age just like the typical children are.





How could you not love these features??

Here is an Oldie but Goodie. See if you can find the boys in this video:

Make an on-line slideshow at www.OneTrueMedia.com

You Tube Video of twins with Down Syndrome

A fellow blogger friend Maggie from Take a Walk on the Happy Side: Down Syndrome Awareness, had a reply to one of her recent posts that was very interesting to me and I wanted to share it with anyone else who may be interested. Maggie is one of the few people I have found online who also has identical twins both with Down Syndrome. If you are a reader of my blog and you know of any other people out there that have twins both with Down Syndrome and you could share their blog with me please do, we are so very rare, and its encouraging to find others who may be traveling the same path.