Tuesday, November 30, 2010

Alex's Birthday Party

Hayden went to his friend Alex's birthday party a few weeks ago. This is what Alex's dad Greg wrote about the event. (Yes, I'm just now getting around to posting it.)  I thought it was sweet and he gave me permission to share: 

"Wow, what a day what a day. Some of you may know that yesterday we had Alex birthday party phase 1.  We are doing this in phases so that our special lil man does not get too over stimulated , as he sometimes does with large groups. This was an exciting day because we invited his two best friends from school. Gavin and Hayden.  I have had very limited exposure to these two guys, but man are they cute kids. I would say Gavin is a bit more serious , while Hayden is a ball of fun.  I know they have a fun and special bond as students of Cornerstone, and I am so happy for the opportunity that Alex has to make friends with these kids. I would say they are all pretty equal on their spectrum and I can really see where they bounce off of each other with their learning. I know that with Potty Training that Alex and Hayden were partners in crime. I go back and forth referring to them as The Three Muskateers and then The three Amigos.

For the party, we rented out the pool area at the Holiday Inn and let the kids swim and play.  I spent a good amount of time playing with Hayden and I gotta say that is one fun and smiling kid. Like Alex , his little smile can brighten up a room. Seeing him swim with the white life preserver around his waist, little legs kicking and just having the time of his life. Gavin slipped at one point and his head went under, he didn’t do well with that, swallowed some water, but I gotta say it didn’t stop him. We put a pair of Alex floaties on him and he kept on swimming. Gavin's big sister Kaylie was there, and she is such a quiet thing I gotta say with three loud boys I almost forgot she was there. It is neat to see how a sibling will be so loving of her brother , not caring wether he is Autistic or not.  Alex, at first he really didn’t want to venture away from the steps. I later came to the conclusion that he didn’t like the light that was on in the pool. Later, he would tell me not to go near the light, so I would drift closer and closer to it. Reaching out my hand to him, “ Help me Alex, help” he forgot about that light and swam to me, “ I save you Daddy, I get you” looking very serious the first time, as if he really intended to save me from the evil Pool light.  I then made it more of a game and he and Hayden would swim after me to save me. Gavin was busy playing with his Mommy.  This went on a good six times before I got tired.  We spent an hour in the pool playing and then it was time to go eat cake and have presents.  Alex, who took the longest to get in the pool also took the longest getting out of the pool… “ I gotta swim Daddy” but eventually he did get out.

The transition to the lobby for Cake and presents was actually pretty easy. All four kids ( 3 boys and Gavin's sister) sat down at the table rather easily and were ready for some cake. To think a year ago, Alex could not be bothered to sit and eat at the table. While dishing out the cake, Gavin looked at Christine and politely told her “ I can’t eat that”  and it is neat that these kids are so in tune with their special dietary needs that he just assumed that this was something he couldn’t eat. When Christine told him it was Gluten and Cacein free ( as well as soy free )  He dug in. Hayden I was told was a very picky eater as well and would most likely not eat the cake. Boy were we in for a surprise. All of the children asked for seconds on the cake, Hayden especially showing enthusiasm for it. You would think that with three four year olds there would have been a mess. Not at all. These guys went to town on this cake. For a brief moment, I spoke with the two mothers on food and what our kids will and wont eat.  Will Eat= short list. Wont eat= Everything.  Face it, our kiddos are picky eaters. Presents went quick and easy and I video taped everything. Unfortunately we did not get many still photos. At one point it looked like Hayden got a little excited as I saw him bob his head a little and giggle, but he eased out of that quickly. Then at the end Alex was overstimulated and had to run it off up and down the aisles. We got him home and that night is an entirely different story.

I have to say, I think the best part of the whole day was seeing how Alex interacts with his peers. Children who are also on the spectrum and how they play together.  What parents of neuro-typical children just don’t see, our kids, their milestones are something other parents might take for granted. I know yesterday, I saw grandparents just sit back and enjoy watching Alex play with other kids and they don’t always get to see that. Our children don’t always communicate as well as other children and their thinking is so literal that we do have to watch how we word things. (I get yelled at this quite often.) I have to say, I am so grateful for the school Alex is in, it has been such a blessing to us that it has brought him together with his compadres. The Three Amigos. So much growth has happened with Alex socially these past few months. I know Haydens Mom has said the same for her son, and I am sure Gavin is feeling the same. It just freaks me out a bit to know that as recent as 20 years ago, it was common practice to institutionalize our children. That thought would keep me up at night if I let it.
This is my First update and I am sure my lovely wife will add to it. Thank you for reading.
Greg Carey

Tuesday, November 16, 2010

What day is it?

Peter Cottontail visited under this tree for a few days.  I think we scared him away throwing too many carrots at him, though.

I am doing the SAME THING every day and I think I'm going crazy!  : )  I get up and drive Hayden to school by 7:30, come home and go back to sleep till noon, eat lunch, call and hassle with insurance/Comcast/whoever else (mostly insurance) or fill out their 10,000 forms, do crochet/fold laundry, make Hayden dinner. Uncle Jeff brings Hayden home around 5:15 and he and I eat dinner and watch Special Agent Oso on Tivo.  [It's funny that this is his new favorite show, because it's great for Autistic kids, showing them how to break a task down into three steps.] Then he gets a bath and all his vitamin supplements, we cuddle or he plays on the computer while I read his teacher's daily note home and respond back. Then he goes to bed, Jason gets home from choir practice around 8:30 and we talk a bit, then we go to bed too.  I'm certainly not complaining, because it is very relaxing, but I never know what day it is, and I'm not sure where the last 4 weeks went! And it's sooo hard for me to walk by that laundry pile and not put it in the washer! Once you become a mom (aka, maid) it's hard to turn it off!

Baby girl seems to be doing well. I'm at 31 weeks, and with every week I feel better about her chances of being healthy if she comes early. The medicine is still making me really sleepy (hence all the naps) but it seems to be controlling the contractions.  I had light contractions all day last Tuesday and thought I'd be going to the hospital in the night, but they never got close enough together, and went away by the next day, so that was a relief.  The glucose test last week was good, but the blood test showed low iron, so I started an iron pill. My next appointment for another fibronectin test is Thursday the 18th.  The baby's heart rate is still really good, and she is moving well.  

Hayden says we should name her "baby." He likes to put his head against my belly and give the baby hugs.  He rubs his hand on my belly button and says, "Aww!  She's sleeping!  She's a giant baby!" He has been really sweet, initiating this interaction himself, so I think he'll do really well when she comes.  We are really emphasizing the big brother/good helper idea.

He is doing so well at his autism school, too, and we're really proud of him. The teachers there are awesome--  a note the other day said, "Hayden had a great day...  he had several tantrums but they were much less intense..."  I love that those two sentences don't really go together, but for him it shows real progress and his teachers totally get that.  They want him to start wearing underwear tomorrow with potty training (instead of pull-ups) to see how he does.  So exciting!  I would love for him to be out of diapers by January.  I am thinking of using cloth, at least part of the time, with the baby girl. Don't tell Jason!  : )  The cloth diapers have come a long way, and there are some great brands out there with snaps and pockets so you can add extra padding.  I really like the idea of paying less for diapers, and having less chemicals on baby's bum all the time. I read that one of the chemicals used in diapers is the same chemical banned from tampons because of Toxic Shock Syndrome.  Eek.

Hayden was super smart and sneaky one day last week at Cornerstone, and got himself in a bit of trouble.  He likes to take a small toy in his hand each day to school, to help him with the transition from home to school.  When he gets to Cornerstone he has to leave it in his cubicle area, so that he doesn't lose it/throw it/hit someone with it while on the trampoline/play with it rather than doing his lesson, etc. He has free time every 10 minutes and can choose to go play with the toy if he wants. Sounds fair to me.  So one morning last week before we left the house, he said, "Hey! I think I'll put this right here. In my pocket," and he put his toy robot Sparks in his pants pocket.  I thought at the time that it was rather smart of him to do that, because he never really realizes he has pockets or that he could use them to hold things.  I also didn't know about the "toys only in the cubicle" rule.  So about halfway through his day at Cornerstone, he was in the bathroom and asked if he could hold Sparks.  His teacher said, "what's Sparks?"  And he got it out of his pocket.  The teacher nicely said he would have to put it in his cubicle to play with there, and took it from him.  He had a big tantrum about it, and was still mad when he got on the daycare bus.  The Cornerstone teachers told the daycare Director Amy (who drives the bus) the story and that Sparks was in his backpack.  So as Hayden kept having his fit on the bus, Amy said, "Sparks is in your backpack. He's coming back to Rainbow with us."  And immediately the tantrum stopped.  I'm pretty impressed that he had the foresight to know that his toy would be taken from him, but if he put it in his pocket he could carry it around all day and no one would know. Little stinker! This morning he kept telling us, "I not take! I not take!" Maybe he was remembering the Sparks incident?

I started the process of warning Hayden that a big family gathering will be at our house soon for Thanksgiving, that lots of family would be over and we'd have a party and eat lots of food.  Instead of getting nervous like he usually does, he said, "a party? Where are the presents? Let's see what's inside."  Well, not that kind of party, little buddy. : )  I told him Santa would bring presents later for Christmas, but he got scared about Santa being in his house. "No, it's not. Not today!"  Well, at least Thanksgiving didn't upset him. We'll just have to work on Santa. Today I asked him again who was coming for the Thanksgiving party, and he said, "Santa?"  Well, no, remember, we're just going to eat food and have family over, like grandma and grandpa.  "Yeah, Hayden's birthday."  Hmmm...  maybe we shouldn't have talked about Thanksgiving and Christmas in the same conversation. 

Jason's been stressed with all his choir activities coming up, plus having to do all the chores around the house.  I think he should try to do less at work, but who asked me?  : )  

Bill is coming from DC Sunday, and it's also Bob's birthday and a birthday party for Hayden's friend Alex. We are hosting Thanksgiving at our house again this year (Jason's idea, so I'm not doing any work!) and then travelling to Ohio for Gram's 90th birthday party Friday.  If they let me travel, I haven't asked yet. If not, I'll stay home with Bill and play video games. : )

When Mommy gives the bath, Hayden and I play "purple toad". We've played it since he was tiny. When he gets out of the bath he immediately curls up on his tummy in the fetal position because he's cold. He looks like a little toad.  So I throw a towel over him and sing a made-up song, "purple toad, purple toad... purple toad in my bathroom... Ribbit!"  When I say "ribbit" I tickle him somewhere and he giggles, then we sing it again. The word purple might be different depending on the towel color; we just started the game with a purple towel the week we made it up, so it's what he calls the game when he asks for it. It's one of the few songs we're allowed to sing (there's still no singing allowed in our house, for the most part.)  So the other night I came in to the bedroom and saw him curled up like a toad on the bed (though he's sideways instead of his usual face-down) with three blankets in his little toad pile.  So cute!  I love my little toad!

Tonight he's sleeping in his full Mario costume (with hat).  : )

Monday, November 1, 2010

Happy Halloween!

Mario actually went trick-or-treating this year!

He wouldn't ring the doorbells, though.  That was too scary. The first couple times we went to a new house, we coached him before going up that he should say "trick or treat" when they opened the door.  But they would open the door and he would just sit there, so we'd say, "what do you say?"  The first couple times he said, "hi."  : )  They are teaching him to say hi to people at his new school!  Ha!  Once he got the hang of saying Trick or Treat, he kept saying that and "Happy Halloween!"  He got to meet a Luigi, several Darth Vaders ("hi Darth Vader!  Hey! Darth Vader! How's it going?"), and Plex from Yo Gabba Gabba.  He really liked the house on the corner with lots of scary decorations the first time we passed.  He kept asking if we could go back and look at the "haunted house." But on the way back the people who live there had figured out how to turn the sound on, and he was really scared!  He covered his ears and froze.  We scooted him off and told him it was all gone, and he was ok.  

We went home and swapped out all the chocolate candy with non-chocolate candy.  He ate half a bag of skittles and two suckers.  Then he enjoyed opening the door for the kids each time they came.  Once I was in the kitchen and thought Jason was downstairs when the doorbell rang.  The door opened but I didn't hear any talking, so I peeked around the corner.  Hayden and about 6 little kids were all just staring at each other.  Ha!  Hilarious.  Hayden had opened the door by himself without bringing the candy.  I hurried over to give them some candy.  

We always tell the kids to pick a couple things, because that's what my parents always said.  As the kids picked some candy or pencils, Hayden would sometimes pick through the bowl and throw things in their bag, too.  "Here, guys, you need this. You want eyeball candy."  The first couple times he didn't understand and was taking some things for himself.  I heard Jason say, "no, that's for them. You're supposed to give it to them."  He also would say "trick or treat!" to the kids the first few times he opened the door!  Jason would laugh and say, "no, they're supposed to say it."  It was a very successful Halloween night for our little guy.

Wednesday is my next appointment with the OB.  I went in last Wednesday because I felt like the baby wasn't moving as much as she should.  They hooked me up to the machine for 20 minutes.  No contractions, and her heart rate was really good.  The OB said she's probably just facing a different way and kicking me in the back instead of the stomach, so I'm not feeling her as much.  So Wednesday I go again for the glucose testing and another fetal fibronectin test.  I hope I'm cleared to go back to work (and to stop taking the procardia.)  I had grand plans of organizing recipes, folding baby clothes, and reading lots of great books.  Instead the medicine (or the baby?) makes me sleep all day. Which is ok, too. : )   

I am frustrated with all the hassle associated with the accident, though.  Phone calls, phone calls, phone calls! I'm not a phone person in the first place, and there's so much paper work!  I'm over it.  I have had time to try a couple new GFCF recipes.  I made another attempt at blueberry bread today, but filled up on GF pizza, so I'll try it tomorrow and see how it is. : )  The last one was pretty good, but needed a bit more sugar. 

In this picture he has too many skittles in his mouth and is trying to chew them up.

Cornerstone had a photographer come to do pictures for their website, and sent us a CD with pics of Hayden: