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.