How well does discipline work for your child with Down syndrome

So today, Penny was a really "bad baby." She bit Nathaniel on the cheek. Really badly. I put her in the time out corner. This was the second time I ever put her in time out. It took her awhile to stay there, but finally she got the point.

After two minutes of continuous sitting, I let her get up and led her back to her brother. I pointed to his cheek and told her that what she did hurt him and I asked her to say sorry. Boy did she cry!!! Was she said that she hurt her brother. I don't think so since I don't believe children at that age can feel empathy. But maybe a person with Down syndrome are more advanced in that area? Who am I to judge? I think it more likely that she was upset by my tone and that she was put in time out.

What do you think?

Penelope and CHD - Part IV

Fact: 50% of people with Down syndrome are born with a congenital heart defect.

You can see pictures of her scar here in Part III. Or read where Part II left off here.

Scott and I finally left the Manchester Hospital a little after 7pm. Again, all I can tell you was that it was so surreal. I know there are plenty of moms that like to leave the hospital as soon as possible, but I was not one of them. Only 12 hours earlier, my daughter Penelope was delivered.

I needed to see my son again before the night was over as well as pick up the prescription for the sleeping aid so we headed out to my mother's house while the prescription was filled. I hugged and kissed Nathaniel so much that night. I had already begun to project my feelings of loss onto him and wondered how his life was going to be affected by his new sister. After I was satisfied that Nathaniel was settled in for the night, we made a quick stop back at the pharmacy and then off to Hartford we went.

Scott had stayed with Penny for several hours earlier in the day so he already knew where to go and what to expect.

It was close to 9pm when we parked at the garage. It was a warm spring evening when we walked out of the garage and across the courtyard and into Hartford Hospital. CT Children's Medical Center is adjacent to Hartford Hospital so CCMC is able to place their NICU in HH to have that unit close to the maternity ward. We were stopped briefly since visiting hours were over, but were quickly on our way up the elevator.

As we approached the large steel security doors to the NICU, I almost didn't want to go in. We were eventually greeted at the window and given nametags. On the other side of the doors, Scott schooled me on how to scrub in. I remembered back to when my baby brother Joe was born premature. I was ten and I was allowed to see him, but I had to scrub in as well. Scott and I headed to her little alcove there in the North wing of the NICU. About only five beds were permitted on this wing and it was so quiet. All the lights were off and I could hear the soft beeping of the machines. Occasionally, an alarm would ring in the distance. But in Penny's small wing, she was the only really sick one. The nurse on duty greeted us and led us into her little corner.

The first time I looked at her, I actually felt numb. A whole lifetime must have passed since last I held her at 9 am. Her eyes were so incredibly swollen that the edge of her eyelids flipped out a little, especially when she cried or was upset. In fact, the whole top part of her head was red. The corners of her small mouth were downturned and her chin was all scrunched up from the scowl. Her arms and legs were sprawled out. I tried to comfort her, and patted her arm. This immediately got her agitated and her eyes looked even more firery. The nursed warned me that it might not be a good idea to touch her while she was on the medicine to keep her heart working. "It can make you grumpy," is what she said to me.

So much time has passed since her birthday; I can't even recall how many lines were in her. But at minimum, she had an arterial line, two peripheral i.v.'s, a sensor on to continuously monitor her temperature, a pulse oximetry probe, and sensors to measure her respiratory rate. I quickly learned the meaning of the green, blue, white, and red lines on the monitor hanging above her bed space. I don't even remeber if she had a nasal canula at this point. I know that she was not on a respirator at this time, even though the prostaglandin medication she was on affects the respiration rate. I wasn't able to stay long. And even though it seemed unintuitive to leave my newborn behind me, I had to leave. I had to get out of that place.

Siblings

Something I think about nonstop was brought to the foreground on one of my favorite blogs last weekend. You can read an installment of what the Ely family is going through right now by clicking here. I feel terrible that this wonderful family is going through something so stressful right now, but they are all strong and I have no doubt that it will all work out for them. Also, Cammie hit the nail on the head with her post the other day. I love how she felt the need to defend that she wasn't doing her children a huge injustice by the adoption of sweet adorable Addy.

There are many websites and organizations that provide support for the siblings of people with disabilities, such as http://www.siblingsupport.org/about/copy_of_index_html

I am often concerned about how Nathaniel processes all that goes on with Penny. On one occasion, I was suprised when he lashed out and said that he is not glad Penny has Down syndrome, that he is not glad Penny had to have heart surgery and almost die. He would rather have no friends and have a sister that didn't have to be sick then to have all the friends that he made through Penny and her diagnosis. I thanked him for his honest reaction, what more could I say? But many a time, Nathaniel told me how much he loves Penny, or how she is the cutest girl ever. Those remarks were completely unsoliciated I should add.

He clearly loves his sister. I know he will be a better person because of her, and that the benefits for him are so numerous I could not possibly post them all. But I need to confess something here. I worry. I worry that he will grow into thinking that he will need to take care of her. Now, I KNOW this will not be the case. If anything, she will end up taking care of him!! HA HA; he is just so careless all the time. I have no doubt that she will be living on her own one day. (or with a spouse. . . ) Strangely, this topic of living with Penny has been brought up by Nathaniel, but Scott and I try not to make it into such a big deal and we let Nathaniel know that he will not have to take care of her.

This is not to say I don't want to mold him into a man that will stick up for her. I mean, I am him mother. I should be able to mold him all I want. For example; Nathaniel and his friend "T" were in the way back seat of the van this weekend when T announced he was hungry and he would, "like some fries please." Nathaniel and T decided to share a large one, and I said fine, as we were smack dab in the middle of lunch and dinner time. When I handed the fries back to T, I asked him to give a couple to Penny, I know she would like some. T stated that he wasn't going to give her any, but yet waved some in her face and started to laugh. Nathaniel laughed along with T. I understand that this has nothing to do with Down syndrome or disability; just kid stuff, believe me, I dissed out my own share of mean stuff to my brothers. However, I kind of yelled at Nathaniel and asked him way he thought this was funny. I asked him to think about if he would like it if we did that to him, and told him that he was going to have to stick up for Penny until she had a voice. Bottom line: DON'T LET YOUR FRIENDS BE MEAN TO YOUR SISTER!

As he grows older, his comments give me a window into his own growth and development. I don't even know really how to answer to the latest thing that has come up a few times (Caveat: this is going to sound insensative, but we are talking about the honesty of a 7 year old) Nathaniel will preface his comment with an observation that most people with Down syndrome look weird, and then concludes with, "Penny doesn't look weird, right? Penny is so cute!" I am curious to know how you all would react to that. I told him that, "Yes people with Down syndrome do have different facial features, but that they look different, not weird." I also mention to him that Penny is still young and as she grows older, that look might become more obvious. Just to prepare him; yet I don't want to leave suggestions. . .

I know that it is natural for him to be curious and I welcome any questions. I would rather him ask me then to go out in the world and unintentionally hurt someone's feelings. My hopes and dreams for him are the same that any other mother would have.: I hope that he grows up into a caring, wonderful young man that will cherish a life-long loving relationship with his sister!

From the mouth of a seven year old.

Nathaniel and I were driving home together from cubscouts when he said to me, "Mommy, I would like to have 17 more babies."

Me: "17. More? From me?"

Nathaniel: "Yes."

Me: "Well, I am 30 right now, and usually woman stop having babies around 40 so I don't know that 17 more is possible."

Nathaniel: "Ok how about two more?"

Me: "Well, if your daddy and I are able to buy a house we may want to have more, but we were also thinking about adopting since there are so many children that need a home."

Nathaniel: "What does adopting mean?"

Me: "Well, sometimes a kid doesn't have a mommy or a daddy and so they live somewhere that can take care of them until a new mommy or daddy comes and decides they want to love them and take care of them."

Nathaniel: "WHAT?!?!?! Do they live in cages or something? Do they get to eat?"

Me: "Usually they don't live in cages. They go to school and they eat too. They just don't have that one mommy or daddy that can give them love like you have."

Nathaniel: "Does it cost money to adopt someone?"

Me: "Well, the kid is free but you have to pay for the paperwork."

Nathaniel: "WELL LET'S GO RIGHT NOW! Let's go get one of these kids and bring him home right now!"

(SIGH) The world must seem so easy to this boy.

Wordless Wednesday. Halloween 2008!

Crazy to think that it is that time of year again. Yippee!!!

Only 2 months late :)

Here are the birthday photos from when Nathaniel and Penny and I all worked on his birthday cake. His birthday was July 7, 2009, but we had his birthday party on July 18 (or whatever that Saturday was ) This was the fateful day I broke my camera by the way. Penny is helping Mommy pick out the pans and bowls that we needed.

Nathaniel and Penny can't wait to get started!!

I can tell Nathaniel was trying to be very careful not to make a mess.

What a steady hand this boy has!

Penelope is so cute sitting up here stiring the batter. It looks like she is having a great time.

Now to reap the benefits of hard work and lick the beaters!!

Ta-Da!! The finished Star Trek cake for Nathaniel's 7th birthday party!!! At least he wanted something easy. Sheesh!

FIRST DAY OF SCHOOL 9/01/09

Another successful day of school. Nathaniel got the teacher he wanted and he actaully said that his first day was "great!" I hope that this is a good year for him. Here are some pictures of the first day:

Nathaniel packed himself a healthy lunch that included some of his favorite vanilla yogurt.

He also packed his bag all by himself!! My boy is getting so big!

We have taken this pose each year since he started preschool 3 years ago. I should find some from past years and post them as well.

Here we are, the family waiting for the school bus to come take him away.

"Bye Mom, I can do this you know!" Me: "Have a great day my little wubby poopey bear!" ha ha ha

Nathaniel's Dreams are coming true

So we got the mad hook-up tonight!! Turns out, Nathaniel is a boy aged 6-8 and LEGO wanted him to play with Legos for an hour and then give them feedback. I wasn't too clear on the compensation piece, but I figured at worse, they would give him a small set of free Legos right. And it was in the town next to us, and it was in the evening so it was doable. Well, Nathaniel was giving me a hard time, because he wanted me to give him all of whatever money he makes. I told him no, it would go to his savings. Well, wouldn't you know, he got this Lego Service Station Set (I priced it at $120 on Toywhiz.com) AND a check for $50. He doesn't even know about the money. He is too excited about his Legos that he gets to build tomorrow. So, in the end. . we both win!! I can't wait for the next one!!!

FlashBack Friday

Memorial Day - 2005

So sad and other thoughts

We had Nathaniel's 3rd celebration for his 7th birthday on Saturday. It was a glorious laser tag party, sans Penny so that Scott and I could get in there with Nathaniel and tag him over and over. Well, I dropped the camera and it is broken. I can't even get my computer to read the card so I can't tell if that was damaged as well. I just emptied the photos recently so the only pictures are those that I took on Friday while making the cake with Nathaniel and Penelope. And then those pix taken on Saturday of course, but man, was that cake cool! Not to mention that we only had that camera for about a year and it was a couple hundred dollars. It makes me so sad. . . .

**update** Scott purchased the protection plan that will cover you if you damage your own camera so they are sending us a new one. YIPPEE!!!

Nathaniel Update

MY LITTLE BOY TURNED 7 ON 7/07. I cannot believe that seven years have gone by so quickly!!!

What I am about to tell you is his secret. If you see Nathaniel, you cannot mention this to him otherwise I might be in big trouble. But it is too juicy not to tell people. :)

Nathaniel told me the other day that he will have to marry his friend Satiria. I asked him why, do you love her? He told me no, he kissed her so now he has to marry her. WHAT?!?!?!? I asked him how this happened. He told me that first he kissed her on the cheek and then he kissed her on the lips. How is this starting already?

Last night he announced that she is his girlfriend. But he was really sheepish about it. I just hope he doesn't get his heart broken. Although, she did call to hang out with him last night as well (before the announcement) and Nathaniel declined the offer. He would rather play video games than hang out with his girlfriend. So typical of a guy!!!!

HAPPY BIRTHDAY PENNY!!!

2 years old

I can't even believe that at 6:50 am this morning it was 2 years ago that my life changed forever. My dear Penny, my heart is filled with love for you. I hope that many great things come for you this year.

YOU WERE ABOUT 15 MINUTES OLD IN THIS PHOTO

ABOUT 10 DAYS LATER AT CCMC NICU, THIS WAS THE FIRST TIME YOUR BROTHER WAS ALLOWED TO HOLD YOU. HE WAS THE PROUDEST BIG BROTHER EVER. AND HE SITLL IS. . . .

Play Date for Penny

www.flickr.com

A couple of weedends ago Penny, Nathaniel and I went to her new friend Dora's house. I hung out with her mom, Jill and Nathaniel got to play with Nicholas, Dora's 6 year old brother. Nick enjoys Bakugan and Legos just like Nathaniel. Penny and Dora had a great time playing and checking each other out. They both love, love books. Dora is such a little cutie pie and I can't wait for our next get together because I know that they really had lot of fun together and Jill is just such a nice and wonderful person. Thanks for having us over Jill!!

Wordless Wedsnesday

SSSSssssssammy Pictures

www.flickr.com maxiak's Sammy the snake photoset

Pictures to be come soon, I promise!

I know, I have really been slacking in the picture deptartment, I have just been so busy lately. Also, I actually have things to do at work now, so no more posting while I am at work.

Scott and I have that meeting tomorrow with Nathaniel's teachers and his principal. Thanks to the many people whose brain I picked, I feel that I have some good ideas to direct the conversation.

To end on a good side. Penny is just such a little joy. She now puts the sign for "more" together with "eat" when she wants to let us know that she is still hungry. I also had a conversation today with the RN for the cardiologist to discuss the real benefit for the MRI at this time. I guess the concern is that her branch pulmonary arteries are not growing to the proper size. From what I was told, the echo is mostly good for getting a picture inside the heart, but once you get to the peripheries the echo is not as reliable. So, if we wait for an echo in two months, we will most likely be at the crossroads and we will have to decide again what to do. I believe now that the best thing to do is to get the MRI done even though it will mean that Penny will have to go under general anesthesia and she will need to be intebated.

What do I think I am doing?

I remember in April of 2007 when Penny was only weeks away from being born and I took my 4 year old (almost 5) to a girl's birthday party. This was probably the one of the worst times I had with him. He pulled down his pants to the 5 and 7 year old girls. Good thing the birthday girl's father was drunk and having a good time. He kept laughing that my son like to "drop trou!!" Later, during presents, he seriously crapped his pants. He was about to be 5 years old in July, why was this happening. We left right after that and I cried the whole way home and at home. I couldn't believe I was bringing another life into this world. What business did I have wanting another child when I can't even get the first one right.

The struggle continues. I see such a bright child in front of me. We do a lot of reading; he writes grocery lists for me. We take library trips. He does cub scouts. But we got the letter today. The one that says your son is in very real danger of staying back a year because he is "substantially below proficient" in reading. I just don't see how this is possible. I know that he might not be at proficient at reading yet, maybe he is at the "slightly below" level. But do they honestly think that keeping him back will keep his interest and be beneficial in the long run? Why do they want 6 year olds reading chapter books anyway. CAN'T HE JUST LEARN AT HIS OWN PACE? The expectations set at this age are ridiculous and I am so upset over this my heart is in throat. I don't think we can fit any more reading into the day honestly. And I loved how the letter suggested that we do these things with him. Like they think that we don't interact with him at all.

Homework time for Nathaniel is a fun time!

Tuesday night homework consists of finding rhyming words for Nathaniel's 10 spelling words. Inevitably there are 1 to 3 words that do not have a rhyme, such as "also," I mean what do you do for that!?? His last word on the list to rhyme was "close." We already had "nose- hose" and "rose - doze" so he was thinking really hard about this one. I tried to give him a clue and I asked him to think of what was on his foot. He said, "skin?" I said, "nope, what is on the tips of your feet?" He replied "Your toenails?" I said "close, what if you take the nails off?" (I was going for toes.) Nathaniel's mouth dropped open and he stared at me for a minute. "Ew, that is gross and it would hurt!!!"

Another Nathanielism

I need to preface this post with: "I love my mother."

I took the boy to Kohls yesterday to spend my Kohls cash and had settled on a pair of jeans to try on. He is still at an age where I take him into the stall with me, so when I took off my pants to try on this likely candidate, Nathaniel proclaimed, "Mommy! Your butt is as big as Grandma's!" Amongst the snickers from ther other stalls I asked him if maybe my butt is a little bit smaller than my mother's. I mean, who wants to be told they look like their mother from behind, right? Nathaniel agreed that maybe, my butt was just a little bit smaller. Ok, I guess that will have to do.

On a brighter side, I bought a very comfortable, cute looking pair of jeans for myself.

Does anyone else have a replicator?

Ever since Nathaniel knew that the letter p said "puh," we have let him put little flat, seemingly empty bags into the mircowave. He reaches up to press the "Popcorn" button and sits back to watch the blag infate. When the bell rings, he pulls out a nice hot bag of popcorn. Well, now that he can read a little bit more, something must have been on his mind for a little while today. About twenty minutes after he made popcorn today, he came up to me and asked, "If you were to put the bag in the microwave and pressed the "Potato" button, do you get potatoes instead?"