I had bought a gift, wrapped it, and put in on the desk in our office. I wanted to deliver it today but I couldn't find it anywhere. I called and asked Doc if he had seen it and he hadn't . I thought maybe one of the girls moved it when they were doing crafts in the room so I looked around the house but still no luck. And what I was hoping wouldn't be, must be. Alex is the only one who would not ask what a gift was for or who it was for, he would just open it. But this time is seems he hid it too. I finally found it in a closet - the ripped wrapping paper was still there, the box was open with the clothes stuffed back in and the baby toy that was in the box too, Rocco grabbed and ran off with as soon as he spotted it on the floor. He had put a board game on top of it, probably to hide it. Nice, always on my toes....

Alex was up all night last night. He actually started in my bed because I had some friends over last night and it was easier to let him start there than have him come down stairs to keep looking for me. He was too heavy for me to move so I let him stay, figuring he might just sleep soundly since he loves my bed so much - wrong! He was up every 30-40 minutes and kept asking me to rub his back to help him fall back to sleep. Then at 4:30 this morning, our conversation went something like this,"Mom, what time is it?" I told him it was 4 in the morning, too early. "Is today Thursday?" I told him yes, still too early, go back to sleep." Am I buying lunch today?" Yes, but not for hours, lay back down. " Is it going to be sunny today?" I think so, but again, not for a while so lay down. "Where's Rocco?" Sleeping with Olivia I told him, don't bother them. "What time is it now?" Obviously time for me to slip him a sleeping pill - just kidding. So on top of a sleepless night, it looked as if he was going to have a bad listening day too. Anything I ask him not to do, he does, and his knee jerk response is always, "sorry" with an attitude, like I am putting him our by telling him to stop misbehaving.

I told him not to go get Rocco from Liv's room, he did. He is not supposed to pick him up and carry him, he did, all the way out of her room and down the stairs. He is not supposed to let him out without a leash on, and he did. The list goes on and on. It was so early I decided to take him with me for a ride and get some coffee again, give the girls a little more time to sleep, so we left. As soon as we got back, he was at it again with the dog, so I put him in his room and told him to stay there until I came to get him. I heard him say that he was leaving this house, that I am a mean mom, so I popped back in and told him not to even think of packing anything up, that he needed to leave his room the way it was. You know what he said? "It's my room mom, I can if I want to. You can't always tell me what to do." Oh yeah? Sometimes I want to laugh so hard because the way he says these things are so funny, and the fact that he is saying them is so funny, but I can't. So you know how people always say that kids with Down Syndrome are so sweet, such angels - clearly that is a fallacy. Don't get me wrong, Alex is a doll, sweet and caring, but just like any other child, he has an edge to him that most people are surprised to see. Just ask his bus driver, Dan, who laughs at him every day, and can't believe how in tune with the world he is. I am glad he is high functioning and is so aware of things, but it certainly comes at a price!

We were out of coffee last night, and I was too tired to go to the store, so I planned to get up early and get some. Of course Alex was already up, so I told him if he got dressed he could come with me to the drive thru for coffee. He asked why we weren't going to the grocery store for the coffee and I told him it was too early, so he went to get dressed. He came back downstairs in a button down dress shirt, a sweater vest, tie, and a zip up sweater over that. To complete the outfit he put winter boots on over his sweat pants. When I asked him why he was dressed up like that just to run out in the car he said, "You never know who we might meet mom. I want to look good." He has a point.....

I order my coffee at the speaker, and as I am about to drive to the window to pay Alex shouts, "Hey lady, can you add an ice cream sundae to that?" Seriously? She heard him too, and answered, "we don't serve ice cream this early, sorry." Kind of embarrassing, but he thought it was so funny.

I had to pick up Olivia and her friend from acting class last night, so Alex and Bella came with me. I had the usual talk with Alex about being good and listening while we were waiting for them to finish, which of course didn't work. As soon as we get there, instead of sitting down in the seats to wait like everyone else, he sits for about 3 seconds and then gets up and walks right into the middle of the group in front of the stage. As I am following him calling his name to stop, I can see Olivia's look of horror as she mouths ,"no, stop him" to me. So I take him by the hand and tell him he can't do that, just walk into a class when it is not over yet and we go to sit back down. He sits in the row in front of me and is kind of leaning on the seat in front of him. There is a boy from Liv's class at school sitting in the row in front of Alex, one seat to the left. He turns around a couple of times and looks at Alex, then moves over two more seats to the left. Really? Why do people, kids, have to be like that? First I wanted to smack him in the back of the head, then I wanted to educate him, then I wanted to cry. But I took a deep breath and let it go. I thought of Olivia and figured she would not be happy. It's always something, I wish I had a tougher shell and didn't let things get to me - maybe someday....

Not a great start to the day today. Since the time change Alex has been up off and on all night long. Last night it was almost every hour he was up, saying he couldn't sleep, what time is it, can he get up and watch tv or play downstairs, etc. At 4:45 this morning he was sitting up in my bed and had been asking for about 20 minutes if he could get up and play. I kept telling him no, that it was still way too early and to wait a little while longer. Do you want to know what he did? This is pretty embarrassing for me to write, but this is what life is like with Alex, so here goes....He says, "mom, what is wet in here? The bed is wet right here." I immediately sat up and felt around him - he was naked from the waist down and had peed in my bed purposely. Are you kidding? I am so freaking tired at this point, all I want is some sleep, and I don't even know how to respond to him. I told him to get up and I had to strip the bed right away since it was soaked. "Why would you do this? You don't ever pee the bed. Why would you take your pants off and go right on my sheets?" Of course he said, "Sorry mom. But I wanted to get up and you wouldn't let me. Now I have to get up so you can change the bed. So, I'm going downstairs now, ok?" So not ok. I want to cry at this point, not because of the pee, because I am so damn tired I just don't know what it will take for me to get a good night sleep. How am I supposed to be patient and kind with the kids when I am running on empty all of the time? So I made him help me bring the sheets downstairs and do the laundry, told him he is not allowed in my bed again unless the world was coming to an end and went t make my coffee. As I write this, he is sitting on the floor next to me whining and yelling already because he is just as tired as I am. Let's cross our fingers for a good day.....

FUNNY: Alex came running to me first thing this morning saying, "Mom, mom, blue pee, what does it mean? What does blue pee mean?" Blue pee? I asked him what he was talking about. He said, "I just went the bathroom and my pee in the toilet is blue! What does it mean? Am I sick?" I started laughing so hard he actually got upset."It's not funny!" I had put toilet cleaner in the toilets last night and it turned the water blue.......

NOT SO FUNNY: Alex let Rocco out without a collar or a leash on - there was a big pack of wild turkeys out in the woods and it took me 30 minutes to lure him back inside in my pj's and no shoes on. When I told Alex never to let him out again without a leash on because he is not trained well enough yet, he replied, "Chill out mom, he's only a puppy." Not so funny....

I know most people enjoy the extra hour of sleep when we turn the clocks back - does nothing for me. The lighter it is in the morning, the earlier Alex will be up. Like this morning, wow it was early, and cold! I let him play in the office for a bit while I waited for coffee, and I smelled it as soon as I entered the room - he had a big accident in his pants. In about 5 seconds I go through a crazy rash of emotions - how does a kid this smart still poop his pants, anger that he doesn't even try to get up and use the bathroom, sadness that we have made no progress with this issue, ticked off that I know he will say the same thing he always does, "sorry mom." etc. Anyway, he went to get the things I needed to change him and I asked him to leave Rocco out of the room while we cleaned him up because I knew he would be sniffing around and making things harder. So of course Alex doesn't listen and lets him back in the room and sure enough while I am juggling wiping him up, holding the garbage bag and trying to keep the puppy away from his bare ass, I get poop on my shirt. Now this isn't like getting baby poop on you, this is hearty 10 year old poop, what's better than that at 5:30 a.m.? He asks me what happened and I told him that his not listening caused my shirt to get dirty, and you know what he says, "Nice mom, nice,...bravo!" He is so lucky I am not quicker on my feet yet, only had about 2 sips of coffee in me now.
Alex knows he needs to throw the trash bag we use into the garbage can in the garage when we are done, so he went to do this while I washed up and changed. He then came to tell me that he had been in a rush because it was so cold in the garage that he threw the dirty poop bag into the large recycling can. So now I get to go dumpster diving basically and sift through for the small plastic bomb. You know how they say if you want something done yourself???? Oh, and he had used the bathroom when he first got downstairs, so when I went in to wash up slipped on a wet floor covered in yup, you guessed it, pee. See, he thinks it is funny sometimes to sit on the toilet and just see where the pee goes if he doesn't hold it down. so now I have to wash the bathroom floor. Sometimes I feel like that old army commercial, I get more done by 9 a.m. than most people do all day.....Happy Saturday!!

Haircut

Last night was haircut night for Alex. He has been getting his hair cut since he was under a year old. He has pretty thin hair, but is grows really fast. I started taking him to my hairdresser and he did great until he was about 2, then started freaking out in the chair. I tried taking him to a couple of different places with the same results. It didn't matter if he was on my lap, not on my lap, had candy in his mouth, was watching a video - nothing worked to calm him down. So we started doing it ourselves at home, just a basic buzz cut, which didn't prove to be any more successful, but at least we could work together to hold him still and his screams wouldn't freak any strangers out. Then I found a place, Cuts for Peanuts, and tried him there a few years ago. He did great! She was fast and sensitive to his needs and it worked well for a while. But the last time we went he ended up crying on the floor under the chair and we decided that was our last visit. I know kids with Down Syndrome can be especially sensitive to noise and certain touch so I just chalk it up to that issue and plow through the experience at home. It is not a pleasant one though. As soon as I tell him we need to cut his hair he starts screaming that he hates haircuts, he's not doing it, blah, blah, blah. I am the one to hold his hand and Doc is the one with the scissors and buzzer, definitely a tag team effort. If anyone were to hear the commotion from outside the house they would think a mass murderer was on the loose, brutally torturing a poor boy inside. No really, he yells and screams the whole time. When Bella was younger she would make us leave the bathroom door open so she could see that all we were doing was cutting his hair, because the way he was carrying on I think she didn't believe us! We even have to sneak into his room after he is sleeping most times to finish trimming around his ears, kind of ridiculous. And after all that, he looks in the mirror and says, "wow, nice haircut, I look pretty handsome."

He is like that with clipping his nails too. I used to have to do it when he was sleeping to avoid another showdown, and to avoid upsetting the girls over such a simple thing. Now that he is older I can use leverage to get my way - like no game night, stories before bed, etc. until he has his nails clipped- and there is still whining and yelling, but I get it done. These simple tasks most people take for granted cause major drama in our house, and usually take some planning and LOTS of patience.

Smoothies and Basketball

We had a little debate about smoothies yesterday afternoon. I offered him a leftover smoothie from the batch I had made for breakfast after school, and he responded, "What? Mom, that is not a snack." I told him it was and he told me that it is healthy but it is a drink, and people usually only DRINK it for breakfast, you don't eat a smoothie. You use a straw not a fork and even though there is fruit in there, it is so not food. So, he wanted something to eat, "Get it mom? So what else do you have?" Apparently I am dumber than I thought.

After that I thought we would go outside and play some basketball, get a little exercise, plus he loves basketball. He is actually really good at making shots - when he makes it in the basket he says, "did you hear that? All net!" So we are taking turns and he is on a roll, he got 10 shots in a row and turns to me with a huge smile and says,"Oh yeah sucka!" Really? When did he start talking like that, and where did he learn it? I really wanted to laugh because it's one of those moments that I feel like he is such a typical kid, showing off a little, testing some fresh language, you know the drill. But, if I react, it can become a part of his vocabulary for a long time, and it really wouldn't be appropriate for him to go to school and greet his teacher with,"Good morning sucka!"

Friends

Alex and I were on the swings together, just chatting and enjoying being outside, the girls were at a friends house together and it was quiet for a few minutes. He looks at me and says, "mom, I love you." Oh, so sweet. "I love you too bud." He says it again, "Mom, I really love you." Oh-oh, I feel a but coming....."but you're not that fun to play with." What?? I usually think of great things for us to do, what is he talking about? He must have seen my expression and said," well you are fun mom, but I need a friend. A friend to play with." I am getting teary eyed even writing it now, which is how I felt after this conversation. Again, here we go with the mixed feelings - I am so happy, almost amazed, that he can vocalize his feelings like this, that he knows I like spending time with him and we do have fun, but of course it isn't the same as time spent with kids your own age. And then the crushing heartache of hearing him say he needs some friends, that he is aware that he doesn't have play dates unless it is with a group of kids and his sisters are usually involved, that he has kids he calls friends, but he needs to actually be with them, play with them. So I promised him I would try to have a play date for just him soon, very soon. Wow, pretty deep for a quick ride on the swings....

This past Sunday we had a big neighborhood game of capture the flag. It was fun to see the kids running around on a crisp fall day, and especially to see Alex included in the fun. He had the job of defense, and they told him to blow his whistle any time a member of the other team came into the backyard. Let me tell you, he blew that whistle like his ship was going down - nonstop the whole game. At one point I had to tell him to come up for air, I seriously thought he was going to hyperventilate! It's always bittersweet for me though, on one hand I get to be with my kids, interacting with them and seeing them interact with friends, seeing Alex having fun and feeling a part of things is always good. But knowing the other moms are inside keeping busy, getting things done while occasionally checking out the window to see if the kids are ok, the normalcy of that ,which I will probably never have stings a bit. I know it frustrates Alex too, he actually tells me to stop following him around, to let him be with his friends, "the other kids will watch me mom, I'm fine, I'll be good." If only I could know that for sure - it is in his heart but is it in his control?

Halloween was so fun! We took the kids to a Halloween parade in the morning, where they got to march with their costumes on and then trick or treat to all the stores nearby. Then had friends and family over for pizza and out to trick or treat in our neighborhood. I was so proud of Alex, he walked to every house and had great manners, but when we got to the second block he wanted to sit in the wagon (which I bring every year for this reason). When he does a lot of walking he complains his knee hurts him, and the doctor said it could be because kids with Downs have flatter feet and walk heavier so it puts more pressure on joints. He was insistent on staying with the group ( I think we had about 16 kids with us) but he wouldn't get out to walk. Then he hit a point when he wouldn't even go up to the door anymore, he actually told me to go get him the candy and bring it back to him! I tried to tell him I was too old and wasn't even dressed up but he wasn't having it - he wanted a full service Halloween. How great is it that Olivia and her 2 friends Julia and Anna went up to the houses and got 2 pieces of candy, one for themselves and one for him. They knew he wanted to stay out trick or treating but just couldn't keep up and went the extra step to help out. Great kids who obviously learned compassion from either Alex or their parents or both. Now eating the candy is a different story - that boy could be in a Hershey bar eating contest and win hands down!

I knew having a new puppy in the house would be a lot of extra work, but I did not anticipate how much more work it would be to handle Alex and the puppy together. I have to watch him all the time with Rocco (the name we decided on for the puppy - Alex still wanted Meatball, Bella still wanted Romeo, I made the executive decision for Rocco) because he tries to do things he knows are wrong. Like giving Rocco a bottle of lotion and telling him to chew on it and see if he can get the lotion to squirt out, or hiding him in his room and locking the door so he doesn't have to share him with the girls. He also likes to pick him up and carry him around which just isn't safe - first because sometimes he holds him around the neck and the back instead of wrapping both hands around the body, and second, because Alex is the type of kid who would think, "man he is getting heavy" and just drop him. He would realize after the fact that it probably hurt the dog to just drop him on the ground, but who wants trial and error like that? Rocco has definitely brought us lots of happiness and laughs, and responsibility for the kids too, especially Alex who loves taking him out to the bathroom and giving him treats. BUT, it is soooo time consuming for me when he is home because he is all over Rocco all the time!

I'm Back!

It's been a while, time has gotten away from me again. Where do I begin? I will start with his medical issues since that is what has taken up some time. He needs procedures and biopsies for his reflux, which we knew, but I just found out he has lost more hearing in his right ear and a little in his left. Our two options are surgery to try to open his ear up a bit and increase his hearing, or a hearing aid. Oh man did I cry when I heard that one - a hearing aid, on a child with Down Syndrome, could the stigma get any worse? As if he isn't presented with enough challenges throughout life. He has had trouble with his ears since he was very young, and a lot of the hearing loss is due to complications from past ear surgeries, infections, contracting MRSA, etc., so we run the risk of that happening again with another ear surgery, but I am tempted to go that route first as I don't think he will tolerate the hearing aid. For those of you who know Alex, can't you see him try to feed the $5000 hearing aid to the dog? And his eyes are next - my heart stopped the other day when we were in the kitchen and he asked which friend was standing at the table -" Who is that mom, Julia?" I said no thinking he was joking and he said," is it Claudia?", and I said, "Alex, seriously, who is that? Can't you see that far?" "No mom, I can't." Then I stopped breathing for a minute. A couple days later his teacher told me he was struggling to see when reading his books too. Another trip to one, two, or three eye doctors depending what they find. I am hoping it will be solved with a simple pair of glasses (not that getting him to wear them will be simple) instead of another eye surgery. He is only 10, it doesn't seem fair.