Pumpkin Hunt and the Air Horn.

Some times autism just plain sucks! There's no sugar coating it, no back  up plan, no distraction. There's only running, running as fast as you can out of the situation before a group of strangers see the silent tears streaming down your face.
Today was a town sponsored pumpkin hunt (it's a bunch of plastic eggs filled with candy that the kids run around and collect) Last year it went GREAT, it was one of my best memories with John.... this year not so much. It was outside this year, I thought that would make it easier on JJ I was wrong. We put on his motorcycle rider costume and went and played at the park because we were early, of course we were early on purpose so he could get comfortable with the change from last year. About 10 minutes later it's time to go over for the hunt. I decided I could do this alone with JJ, so I left Andrew and Julia at the playground took JJ's hand and headed to the field. There were about 20 kids there all dressed up in anything ranging from clowns to GI Joe to Cops... complete with a whistle. I walked John over to a quiet section of field and explained the rules to him. No running, No hitting, No grabbing pumpkins from other kids. Then it was time to start, all the kids lined up then the volunteer sounded the air horn. That was the end of us. JJ started crying and clung to me saying over and over again "No loud noise". We walked away from the field both of us crying silent tears holding onto each other.
It was another reminded of how different our lives really are, a reminder that we've come so far but still have so much further to go. A reminder that sometimes a moms love just isn't enough. So we left and went to the playground, I got a much needed hug from my husband, JJ got to run around and go down the slide with his little sister. Then we went to Friendly's for dinner because sometimes you just need to see your kid happy, and if toppings will do that then damn it it's toppings for dinner. (Yes just the toppings please, no ice cream!)

ER trip, harvest fest and Edaville.

The end of our week had it's up's and down's. JJ got sick Thursday night and of course in true kid fashion it was the middle of the night. He came down stairs with this awful barking cough, he'd cough and cough and cough then gasp for air. That with the 104 fever and him being a few days post op I scooped him up and went straight to the ER at 2am. By the time we got to the ER he was doing better with his breathing (yay cool fall air!) but was still burning up. The Motrin and steroids kicked in and he was like new again. He LOVED the breathing treatment much like the "water medicine" much like the asthma breathing treatments we do at home. He actually thanked the doctor and nurse for making him better! 4:30am we were back on our way home then I got to come home and sleep thanks to my awesome Mother in Law!

Today was an up day! We got passes for Edarville Rail Road for half price on line. We take the kids every year and every year we always say we wont go next year because for us it just has never been worth the money. But for half price I decided to go for it, we were going with my brother and his 2 girls as well. With life so busy I don't get to spend nearly enough time with them so I was excited to get a whole day in with them! We started today with a big breakfast at my mother's house complete with Mickey Mouse waffles then off to Edaville we went. We got there right when they opened, the kids ran for their first ride a fun house! The big kids stayed together and got right threw. From there they went on every single ride at-least twice, even Julia went on every ride she was tall enough for! We had lunch, took the train ride then did all the rides again! 5 hours later the adults were ready to go! The kids still had energy to go so they thought lol! On the ride home both kids fell asleep for the hour ride home.

It's days like today that make days like yesterday even sweeter! Yesterday was just awful. The kids fought all day, JJ still wasn't feeling well, neither kid took a nap. We did get to Harvest Fest at JJ's school which was really fun. JJ had fun showing JJ off to all his friends but over all an awful day! Today was everything I've always wanted Edaville to be, it was a true family day! It was nice and warm and the day was not rushed at all, we wondered around with no time constraints. Perfect perfect day!

Ear Tubes round 2

It's amazing how far JJ and I have come in 2 short years! JJ had tubes put in his ears shortly after he was diagnosed with autism. They made a HUGE difference, I'll never forget the first time he heard a bird. He was in bed and he kept calling me into his room, finally he said "Mom whats that?" It took me a few minutes to figure out what he was talking about. He was so scared by the sound of the bird chirping. He grew to love that sound, and the expression on his face that first time was nothing short of magical. And come on how many parents can say they remember the first time their child heard a bird? 

The tube in his right ear fell out months ago and after non stop ear infections for 2 months we decided to have a new tube put in. It's a very simple procedure and takes all of 20 mins. When he had the original tubes put in  it was my first time going into an operating room, it was cold, bright and scary. Monday made surgery 4 with the kids and I can't even remember the amount of times general anesthesia has been used on them for various test ( MRI, CT scans). So I felt like a pro. JJ and I went up alone this time no back up needed! He was a pro!! He talked to the doctors and decided he was going to be a doctor that day, he had every single person in the OR have a mask on so he could pretend to put everyone to sleep! They were great sports lol!

I held him as he smelled the root beer air and fell asleep, the nice male nurse walked me out and into the waiting room reassuring me the whole way that my little boy would be ok. I smiled and explained this was not my first rodeo, he was happy not to have to deal with an emotional mother and I was happy to not have the your child will be ok talk. With that it was off to the waiting room where I was very happy to find a muffin and water to eat! I always have this rule for myself when the kids have fasting for any reason I also fast, I know it's stupid but if they can deal with it so can I. 

They came and got me and I was in right as they woke him up. The 40 minutes it took for the drugs to wear off were pure HELL. JJ did not wake up smoothly, there was extra oxygen needed and he didn't know where he was or who I was. I was holding him and he was kicking and screaming for his Mommy. But like the nurse said 40 minutes later he would be fine. And she was right to the minute! 45 minutes we were on our way home! 

On our way to Sesame Street!

We had our trip to Sesame Place! Overall it was a GREAT trip! JJ was amazing on the 10 yes 10 hour drive down there (it should have been closer to a 6 hour drive but TRAFFIC!!) He did not complain once, we only had to stop twice for potty breaks!
When we got to the hotel JJ was so excited! We checked in, went up to our room and as much as I wanted to flop into bed and call it a night JJ wanted to explore! And well this trip was for JJ and to a 4 year old a hotel is just full of cool things so off we went! First we had to check out the elevator so many buttons! Then was the pool, all JJ talked about was going swimming.... but then we got there and the pool smelled like chlorine (his first time at an indoor pool) so he decided we could skip the swimming (SCORE!!! I really didn't want to go swimming at 10pm!), then we went over to the restaurant  that had a big picture of pizza and pepsi, but we were there to late and they were closed. JJ took that extremely well, no fight or anything! After that we went back to the room. He had to call everyone we know and tell them about the two sleep number beds in our room! Of course he had no idea why I was so excited about the sleep number beds but he was excited with me lol!
We finally fell asleep around 12:30am.... and were bright eyed and bushy tailed at 4:30am! Breakfast didn't start until 6:30am so we played in the room for a LONG time! Then we got ready and headed to breakfast! Bacon and scrambled eggs  for JJ, strawberries and french toast for me. This took us to about 7:15am... park didn't open till 10am so we check out of our room and go to a near by target to load up with snacks for the ride home. Finally were at 9:15 am ok time to head to Sesame Street all the while singing "Do you know how to get to Sesame Street".

Growing up as a Mom!

Another day another call from the school nurse. I must admit I really do like our school nurse, she's very careful with John and always calls if John goes by her office during the day. Like the time  when John  potty training and got sent home from school because he refused to pee and she was worried he might have a problem... when he was really just holding out for a munchkin. But sometimes I wonder if anyone talks to the nurse as much as I do. I even have her number on speed dial in my phone. It's Wednesday and I've talked to her every day this week. Once to discus John's seizure over the weekend, once about the upcoming field trip and how we would work out JJ's medicine (I get to go on the field trip just incase anything happens score!!) but today's call was John was bit by another student on the bus this morning. Now a year ago I would have flipped my lid, pulled JJ of the bus and driven him the rest of the year... but I guess I'm going from "new school mom" to "experienced school mom" because well of course I wasn't exactly pleased about it I wasn't upset either. I asked if the bite broke skin, she said no and my reaction was oh ok he's fine then. This is the second time this week I've had one of these moments where I laugh at what my reaction a year or so would have been vs what my reaction today is. Yesterday John would not put on his backpack to be dismissed from the playground last year I would have been so embarrassed that my child would not listen to his teacher, well yesterday I looked at him and said very straight forward look buddy I have all day, I can wait as long as we need for you to put your backpack on, were not leaving till you listen. Two seconds later the backpack is on and were out the door. I kinda like being the experienced school mom!

Lazy week and a "Big Boy Trip"

Julia and I have a pretty easy week this week, not much going on at all. This is the first week in a very long time we don't have a single appointment!  We have been playing and lounging around in our PJ's till well past noon. This morning I decided it was time to go threw all the kids clothes. Another trash bag full of "to small", it would give me a small heart attack to add up the amount of money we spend on clothes for the kids each year. But at least we have friends and family to pass them down to after our little ones outgrow them! 

John is getting VERY excited for our special trip this coming weekend. When I was John's age my mom took me to Sesame Place down in PA without any of my brothers and sister. I had a blast! I still remember how special it was to get away with just her almost 20 years later! I also remember the extremely scary hotel we stayed in and the firing alarm going off in the middle of the night and my mother telling me it was an alarm clock and to go back to sleep... then the fire department banging on the door and getting us out... but lets focus on the positive lol! I've been trying to get down to sesame with JJ since I was pregnant with Julia but it has never been a good time. Well guess what it's still not a good time. There is definitely other places we could really use the money right now BUT he's the right age NOW and the bills will still be there when we get back but the chance to relive one of my best memories from childhood with my own son will not be so were leaving Friday afternoon! I hope to make the trip as special for him as it was for me! 

Greater Boston Walk!

Today we went to the Greater Boston Autism Speaks walk. John did not come with us, neither did Julia. They got to spend the day with Grandma and Grandpa Cycle, being extremely spoiled! They went to IHOP for breakfast, then they went to church, then the "popcorn place" or what everyone else might call it the 99. (John has been calling the popcorn place for about a year now... well because you always get popcorn with your meal... and John LOVES popcorn!)

We got to the walk bright and early at about 7:15am, well before the 10:30am start time. We volunteer for the Grand Club, myself, my husband Andrew, and my brother Andy have put this on for the last two years! It's a TON of work but worth every second, getting to personally thank every person that has raised over $1,000 (hence "GRAND Club" yes I've been doing this for two years and I just today got that "Grand" was because they raised a grand and not because they did a "grand" job, yes I guess I'm a little slow on the uptake lol)

We handed out our thank you bags and the special pins for 3 plus hours. We thanked everyone we could, met some amazing people, and as always got overwhelmed with all the emotions I feel every year. Happy that I'm not in the alone, that other people get it, they really and truly get what the autism diagnosis and living with and autistic child means. Sad that other people have to deal with what we deal with on a daily bases. Mad that crowd of newly diagnosed children grows every year, Every year we see the scared parents walking in, not knowing what to expect, not knowing if they will be excepted, whether their child or children will be excepted, not knowing if they will have to explain the actions. Every year you see the relief they feel and you see them relax. You hear the "lost kid" calls and don't get the dirty looks you would anywhere else because every knows, most have been there. We wouldn't judge. You see the info stickers on the kids backs just for this reason, you see the pec boards, sign language, service dogs, weight vests, and the best thing ever lots and lots of balloons and bubbles! 

It's a day to celebrate our kids, to realize your part of a special club, a club no one wanted a membership to but were going to make a the best of the membership since we have it! Some day I hope to bring John to the walk with me, when he is a little older and he will be able to enjoy it, for now he enjoyed his special Grandma and Grandpa Cycle day! And Andrew and I really enjoyed a day for us to recharge our batteries and spend some time together while giving back to cause so near and dear to our hearts!