Christmas Eve Party= Success!!

Christmas time this year flew by! I swear I blinked on Black Friday and next thing I knew it was Christmas Eve! We did our usual Christmas routine, we went to Uncle Jake's house for his Christmas Eve party which this year JJ went inside!! Yes you read that right I am so happy he actually went inside! We have been going to "Uncle Jake's Mommy and Daddy's Christmas party" for 3 yes 3 years now and never once have we made it past the front room. Every year we walk in and go about 3 steps in the door to the first couch and that is where we spend the night, away from the crowd, away from noise, away from fun. But not this year! This year John decided that it was cold right next to the door and maybe we could find another corner that was still quiet but maybe warmer. So off we went for a warm corner we walked threw all the people over to the living room next to the fire place. John took off his coat (one thing about John is he WILL NOT take off his jacket if he is uncomfortable. I swear it's so he can run out the door at any given second if he doesn't like whats going on) but anyway he took off his jacket.... then his shoes. My boy was VERY comfortable! One thing you have to understand is Uncle Jake (Uncle Jake is Andrew's best friend, he met JJ when JJ was about 2, right after JJ was diagnosed with autism) is that Uncle Jake is one of the most sincere, nicest people you will every meet. Also Uncle Jake loves JJ and Julia, in a way only and Uncle could. And of course Uncle Jake gives the best gifts... electric drum sets for a 3 year old.... yes those kinds of "best gifts" but we love Uncle Jake! Uncle Jake has always went well out of his way at his Xmas Eve party to make sure JJ is comfortable. This year JJ fell in love with Jake's dad... who well he tried to get JJ to call him Uncle Leo will always be known as "Uncle Jake's Dad". JJ spent most of the night letting Uncle Jake's Dad know when the fire was low. He talked to Uncle Jake's Dad, he played with a little girl about his age and just had the best time!!

Autism.. a family diagnosis.

On nights like tonight it's thrown in my face that autism really affects the entire family, especially Julia. At John's school tonight they held their annual family holiday fair. Last year John LOVED it! Well this year was a much different story, I don't know if it was the classroom change, the star he couldn't have, mommy talking to the other adults, Julia having a blast, or hell maybe the stars were just not in alignment tonight whatever it was made it a disaster.
I should have know when we walked in and John wanted to go right into his classroom which was not one of the open rooms, but I thought we could power threw.... how wrong I was. We started upstairs in his old classroom and they had the star of the day star hanging on the bored.... John wanted it.... and no was juts not working so we left that room and tried the arts and crafts room (Julia's favorite!) John wouldn't step foot inside. Julia went ahead in with Andrew she looked so proud, so happy to be in school! She sat down at the table with all the big kids and painted her tree. She would have stayed there all night had she be given the choice. After about 10 minutes we attempted the  movie room again (passing the music room which is something Julia would love), John was not having it so again Julia went in with Andrew and when I say "went in with Andrew" really she walked in all by herself and Daddy followed her so she didn't get lost. She went up to the teacher she never met and asked if she could please have a water, sat down and watched the movie with the kids. She had a blast!
Like many other things it was cut short. John could not deal, we had to leave knowing full well it was not fair to Julia. Knowing Julia could stay and play till it ended, we put on her coat and left promising that when we got home John would be going to bed and Julia could stay up and paint. John cried all the way home while Julia talked about colors. At home John screamed in bed while Julia painted her little heart out and I watched and couldn't help but question how much will she miss out on in life?

Beating Autism.

Alone. Being alone always sounds like a great idea and the first 2 hours are great, I can lay around and watch TV without being asked a million questions. But after 2 hours its just lonely. John started his very first day of typical school today. It felt like it was his very first day of school (he's not even changing buildings just a different class room.... its even on the same floor) but I was so nervous, and to make matters worse I let his dad drop him off and pick him up. It shouldn't have mattered he's been to that school, walked in that door hundreds of times but today was different, today he was in the typical class. Two years ago I had this dream for him to go into a typical class by the end of elementary school, he did it less than 2 full years.
John is growing by leaps and bounds every day, I know he will do great things in life, but as he grows it's becoming more and more clear he was misdiagnosed with autism. I hate the term "misdiagnosed with autism", I don't feel it's far or right. He has (and still has to a much smaller degree) problems, but he has worked his tail off for over 2 years now, when other kids were on play dates John was stuck in rooms with specialists, other kids went to the zoo John went to early intervention, aba, floor time ect. He's worked so hard to come so far and to be told sorry kid it was all for nothing. No I don't accept that. I was at John's IEP meeting last week and the principle and teacher both suggested maybe John was misdiagnosed. No we were lucky, damn lucky that we caught John early, that we had the resources to get all the therapy he needed, that I made a choice to do everything in my power no matter what the cost. And let me tell you the price tag was high, my first marriage went up in flames mostly over not agreeing on how to handle autism, we lost our home because I had to be home for John's therapy, hell even when I remarried our wedding day was effected by autism, we gave up our dream wedding to be married earlier and have better support for the kids. Our entire life for the last 2 and half years has been autism, it consumed us just like a cancer patient's family is consumed with a diagnosis. But when your in remission your considered to have "beat it" but if you no longer fit the autism spectrum your misdiagnosed.. not in my book in my book John "beat it". So when we go back to the neurologist in a few short months and John is reevaluated and if he does not meet the "spectrum"  anymore I wont be mad that he was misdiagnosed, I'll do the same thing I did when my best friend "beat cancer" I'll throw a party, I'll pack our bags and go wherever John wants to go. I'll be prouder than I've ever been and I'll hold my husbands hand and say "we did it".

Thanksgiving

Thankfulness... This year I have so much to be thankful for. I'm thankful for my children they have made me who I am today. John has opened my eyes to a whole world I didn't know existed, he has taught me compassion, patients, acceptance, and to love unconditionally. He has taught me to value of a good teacher, the power of a hug, and to never take language for granted. 

 My sweet sweet Julia. She has show me a whole different side of parenting, an easier side. She has taught me the power of language at a young age, the joy is "cooking",  the closeness of putting in a pony tail and singing twinkle twinkle little star. Her excitement for life is amazing and I can not help but smile when she is around. 

My husband, who keeps me grounded, who can put a smile on my face with a simple text, who has been known to drive 2 plus hours to bring me a sandwich when Julia is in the hospital and I just couldn't leave her side. Who taught me it really is okay to take time for just me, that I deserve to take a break from life, that I can do anything I want to. Who showed me what true love really is. 

My in laws who accepted me and my children with open arms, who are the type of grandparents every child should have. They are a much bigger help than they even know. 

My siblings we are closer now than we ever where growing up, we are now all great friends. They are amazing aunts and uncles. 

Autism... yes I'm thankful my view on life has been expanded. That I can really truly understand what other parents go threw, that I just get it and I have something to be passionate about. 

Cold, Colds and more Colds!

We've had a busy few weeks. When my kids get sick they get real sick real fast. Tuesday night Julia felt a little warm like maybe she was coming down with a cold, I took her to the pediatrician Wednesday morning for what looked like conjunctivitis, but they didn't like the red around her eye so they sent us to the ER at Children's. The ER doctor was very very nice she was hopeful that as long as Julia's white count was under 15,000 we could go home and just watch her closely, but her white count was up to 18,000 so by Wednesday afternoon she was admitted to Children's Hospital in Boston. She had a sinus infection that turned into cellulites. We only had to stay for 1 night this time around because we caught it nice and early. This time she got a lot sicker than last time, she spiked a high fever 103.9, she was just miserable. The next morning after some IV fluids and IV antibiotics she was good as new and after a long day of waiting for discharge papers we got to go home Thursday afternoon.

Saturday John felt a little warm and started getting a cough. Sunday he still was not much better so we took him to the pediatrician (on a side note their old pediatrician was covering yay!! I really loved her!) but she wasn't sure if she heard asthma or pneumonia so she sent him for a chest x-ray just to be on the safe side. Seeing how it was a Sunday radiology was dead, so we got right in for the x-ray. After the x-ray the man doing it let JJ look at his x-ray and was showing JJ all the bones, JJ thought that was awesome! A few hours later the doctor called back to say he did have pneumonia (again) and we should start him on breathing treatments to keep his asthma under control and antibiotics (again). I really do respect this doctor so I asked her opinion if she thinks all these infections could be a side effect from his medication. She thinks it's just from being in school that he's catching a lot of things. I'm still not overly convinced of that so I'm waiting for a call back from his neurologist, at the very least the nurse from neurology I talked to this morning agreed it would be a good idea to do some blood work and make sure his white counts are back where they should be. I'm going to be asking the neurologist about referring him to a lung doctor, this is the 4th lung infection in 2 months and he's gotten asthma in the last 4 months as well.

On a very big positive note we will be switching JJ into a mainstream prechool class after Thanksgiving! My personal goal for JJ was to be mainstream by kindergarten gives us so much hope! I'm so proud of him!

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!