mom's cake

My birthday happened to land on a tues. this yr., so the family came over for a cookout with some friends and a very large cake. Dinner was great, the kids ate good, the cards made me cry and then the dessert. A very large sheet cake that was so good with a scoop of ice cream on the side. I felt daring, I gave Corey a piece with ice cream so that he could eat it all by himself. My mom looked on ready to jump in and help with the mess he was making. He was enjoying himself, feeding touching, mushing, it was great. Bedtime came a bit late that night since everyone was on a sugar rush, but it only took him 2 x's up before he was asleep.
The next morning seemed to come so fast and I opened my eyes to him standing on the side of my bed with his hands covered in something?? First look I had a thought, was it edible or not? Well it was frosting, a sweet white frosting from what? MY CAKE! I ran into the kitchen to see my now 1/2 sheet of cake smeered down the front of the stove and upside down on the floor. Ugh! Now what? He was wet and covered in sugary frosting and needed to be changed, but the floor needed to be cleaned up. So trying to hold him back I scooped up what I could and yelled for dad to get him. Phew, saved! Nice and clean at 6am and ready to start our day!!

working hard

Cans 4 Corey raised over $1600 again this year. I didn't think that we would hit that mark but I'm so happy that we did! Hooray for us and for all of our wonderful volunteers and everyone that donated, esp. FARMINGTON!! They brought a dump truck, that's right a dump truck filled with 5c returns. Very long and busy day, one potty break, 2 diaper changes, some fishy crackers and a few juice boxes. Yah! Corey spent some time with a family friend at the park with her niece and big bro, so it was more play than work for him of course. But I'm glad that some cdsc families came out to see what we were doing.
Our next adventure will be the motorcycle ride, how much can we raise? Hopefully more awareness than anything. That's so important to me and I'm sure to so many other families out there with children with special needs. Just know that our children can do great things in the world and they will work hard doing it too!

a burden

Last week I was on fb and saw that a mom that I know who happens to belong to the CDSC had written about a situation that had angered her. Another mom helper at her son's school commented on her son being a burden for his one on one while she had been in the same room helping out. Being so upset and angry she left the room in tears.
Is this what people think of my son? How do I know that this same thing isn't happening in his classroom? Is he a burden? And to who is he a burden to?
See for moms like me we don't have the luxury of asking our children about their day and having them tell us. We have thoughts of how their day could have gone or get a feel for it by looking at their work that was sent home, but we have no way of really knowing.
When I look into his eyes, a burden is not what I see. I see a strong willed young boy that will have to work a bit harder than his peers. He walks, runs, laughs, is silly and makes others smile when they meet him. He is a child and he is my child. One day he will be able to tell me how his day went, just not today.

my music boy

The day came for all the can drive, I knew that it would be alot of work but didn't know it would really be alot of work. I lost 2 bags on the way but stopped and grabbed them as the kiddos were strapped into their car seats bee bopping to the tunes in dad's truck. How was it that the sound of music just makes things all better? They sure do feel this way and it seems to make me feel the same at times. When corey hears music no matter where we are he starts to move, shake and bounce. In the car if the radio is on and I lower it to hear one of the kids of talk to one of them he fusses like crazy for me to turn it up. It took me awhile to figure out what he was trying to tell me and we finally figured it out.
He's now making sounds that are totally sounding like words. In another year and a half he will be speaking in sentences. Funny faces and mimicking are his talents, besides being a good runner.

the runner

So the other day, saturday actually, we were all outside enjoy the beautiful weather. Kids running around laughing pushing toys and mom separating bottles when all of a sudden the neighbor yells something across the yards. Not hearing her, I quickly snapped back to her as she repeated herself I realized what she had said. "Are you missing a little boy", as I started running up the driveway I realized that yes in fact Corey was not in the yard. Now he likes to run around the house pushing his shopping cart and trys to run up the driveway, giggling as he watches me chase him. He wasn't laughing this time, he was scared. Wondering what was going through his mind, I grabbed him from the stranger that was holding him and walked sadly back down the driveway. Knowing what could've happened I started to cry. If only I hadn't looked away, or been so trusting of him, what kind of mom am I, these were rolling around in my head.
He is quick yet they call him "slow". He will surprise us all with his accomplishments, but I can't stop thinking of that day and the what if. Then again today while playing with brother and sis he started pushing that cart and up the driveway went the little runner. This time he was caught. Someone's watching me in the heaven's, thank God!

little bro

Thursday was parent teacher conferences for both Corey and Dylan. I was anxious to see what they had to say about his progress. We had received progress reports earlier in the week to get a heads up, but that's on paper ya know. And to my surprise the words came out. "He's doing wonderfully", sigh of relief came over me and my smile couldn't go be smacked off if someone had tried. The one child that I have been so worried about is doing great and learning and loving it. Things that he's learning in school, he's bringing home. He touched his head and said head. "Head", very clear and over and over and over. I had wished the day would come where he would say a word so now those days are here and they're just getting better.
Then there's my "typical" child. He on the other hand, not so good. And to think, I had hoped he would be the genius. We will just have to work harder and it'll come. Hey he just might learn something from his little bro...

she got me

It was a sunny, windy day that I just couldn't get the chill out. The back door needed to be opened a bit since the kids wanted to play on the deck, but would always end up closed since Corey just likes to push it. I had to put a stick in the top of the slider last year so he would stop closing it, I'm guessing he doesn't remember. Guess that stick will have to be put back.
He went off to school this morning with a pb&j that dad made. School was extended an extra half hour so they were going to eat their lunch today and not just a snack. Dylan had no school and did some errands with dad while Brookie and I stayed home to pick up, have lunch and just sit back alittle. With that extra time at school I had a feeling that he would be whiped and be ready for bed. Sister decided to fall asleep earlier in the day so he was the only one going down and knew it. Not happy, it took a couple of trys, but he was beat and finally gave in.
While I separated cans for the can drive I could hear him breathing in the monitor and his siblings running around the house outside in the sunshine.
At dinner he was trying to tell us something but we just couldn't get it. We were all guessing and we think he wanted his milk since he had got mad and threw it down when dad picked it up telling him no more and putting on the counter. He could see it but never fussed for it so he had us stumped. As I walked over to it, I could hear a sigh of relief from him, as if to say finally she got me. What a day and tomorrow he's home. What will we do?

and so it begins

Last night was quite productive. Dinner went well with even seconds requested except I think he was confused. Corey was torn between eating another plate of chicken with pasta or taking a bath?? This was huge since he saw the plate but remembered that I had mentioned the words "take a bath". His selective hearing kicked in when I said "after dinner we will take a bath." That was it, dinner had reached a hault. The other 2 decided that they were also done even though they hadn't finished theirs yet. Now it was time for a bath. Big bro and little sis had theirs in the morning while dad brought Corey to school, so they were relieved that it wasn't their turn but excited that it was his turn now. It's not that he doesn't enjoy the tub it's just that he doesn't really like it so much. He does the shivering, the yelling (just to hear his voice echoe) and of course the splashing and then the water. That dreadful water on his face that also takes his breath away. Not happy but then it's over time to get out. This is when he decides to start to swim. The other kids think it's just hilarious. I on the other hand do enjoy it but don't show him since I'm ready for it to be over. Shaking until he spits up is just his way and the more I try to dry him the more he shakes, ugh... Time for alittle snuggle cuddle and it's over. Bedtime at last. It doesn't end there since the 2 youngest get out of bed 3 or 4 times before they stay there. Dylan is the last one to bed, only 15min. later but it seems like much longer. Everyone's all in tucked in with their goodnite kisses, hugs and many "I love you's" when I realize that it's not the end for me. Still notes to write with friends waiting, laundry to do and of course some t.v. and knowing that tomorrow is another beautiful spring day with fun for all. And so it begins...

when the time comes

Another windy, chilly day without spring?? Soon I hope and so do the kids. They get tired of jackets, hats & gloves, especially Corey and when the wind hits his face he gasps for air. It seems to just take his breath away but I keep telling him to close his mouth. We still seem to have the problem of his tongue being out, he is aware but he just likes to hear mom, dad and his siblings tell him to put his tongue in. He laughs about it and then sticks it back out again.
Conferences are tomorrow and thurs., very confusing, one has school tom. but not thurs. and same on thurs., they're trying to make me crazy I think. He's been doing well in school but I just expect a bit more from him and we work on it. I don't think that will ever change. We will always struggle with one thing or the other just being parents that is.
There's a misconception about children with Down syndrome, that they are all the same. This maybe so in some ways, like similiar facial features, ruff voice a cute little stubby walk, but not in all. I think that my 3 children are alike in so many ways even with 1 having ds. Temper tantrums, yelling at mom or brother or sister, throwing food, no food you name it. We just need to remember, they are OUR children, your neighbors, classmates, cousins, brothers, sisters, friends, advocates, fighters but most important they are people first. They believe in their rights and the rights of their friends. Love them, support them and help them with their lives journeys. He is my future and the future of many more to come. I will be sure that he will be ready when the time comes to stand up for himself and be heard.

almost there

As I sit here writing and waiting for Dad to come home from work, I wonder what can I do tomorrow to make Corey want to try new foods and sometimes just the same food he eats but is just not in the mood? I can hear them jumping up and down behind me on my sorry looking bed and then in Brooke's room, what will they break or what are they going to break? These are the questions that run through my mind all day pretty much everyday. Corey goes to am pre-k and Dylan pm pre-k so I always have at least 2 kids but when 1pm comes around it's sleepy time for the girl and the middle son, yeah!! This is my time to find out how to blog, check out my facebook, make phone calls, laundry, dishes, get dinner ready or just clean up from a morning of hurricanes. I call the two youngest my little hyenas since one gets my attention and the other goes in for the kill, I know I'm in trouble then. Well it seems to be getting quiet so that means bad things are happening it's time to gather the troops and head to the tub where water flies, toys swim, tears roll and dirty little kids are sparkling clean again. Is it bedtime yet? I'm almost there.....

Cans 4 Corey

March 28th from 9am-1pm be at the M&M Redemption Center in Wallingford to help us raise funds for the CDSC and their Buddy Walk (sept. 26th). Bring in your 5c returnables, whether it be plastic soda bottles, beer bottles/cans or soda cans, and we'll do all the work. I'd like to see if we can beat last yrs. totals of $1622., can we do it? Yes we can can!!
Rember that's this saturday, come down and meet Corey and some of his friends!

Our CoCo Key adventure

Sunday was our CoCo Key fundraiser for the boys school. The PTA is helping to raise $ for a new playground and it hasn't been easy. This fundraiser I took over from a mom who had started it and figured that it would go ok, but I just didn't feel that we were going to sell enough tickets and I was right.
First off let me say, just to speak to the person in charge of events at this place was practically impossible never mind trying to get someone to return your phone call. We went there on fri. to give our deposit and first impression was "WOW" this place looks awesome. Of course the man that I had spoken to on the phone and once through email was not there. So the a nice woman at the front desk called for someone else to help, by the way she and the man that came down to take my deposit were the nicest out of everyone that I came in contact with at this lovely place.
Getting there we were all excited, Dylan woke up and yelled out "Water Park", that was the last time. Dylan who's the oldest was the only one going this time, but his cousins and uncle were coming with us. I didn't think that Corey or Brooke would be able to handle it. We arrived there where we met up with my friend Mary Jo, waited in line and got our wristbands. I was not impressed with any of their front desk staff, not friendly and not helpful at all. My husband says that I'm just very picky but I feel that there is a certain standard of customer service that needs to be in place wherever you are and they seriously failed. Family's started coming in and Dylan went ahead in with his cousins and his uncle. A few minutes later he came back to the lobby wet, shivering and upset. Inside their is a big bucket of water that fills up and then dumps out and it tipped over when the kids were under it, he is not a fan of having water splashed on his face, needless to say he did not go back into that water for the rest of the day. We left there 3 hrs. later and he says that he is not going back.
After a few hrs. at the water park it was nice to come home to Corey yelling "Maaaaa" in that scratchy, horse voice of his and little sister smiling at me. They enjoy grammie & poppie but I think they both missed their mom and big brother.